KosAbility

KosAbility https://www.dailykos.com/tags/KosAbility News Community Action Copyright - Kos Media, LLC Fri, 13 Mar 2026 18:10:30 +0000 Fri, 13 Mar 2026 18:10:30 +0000 rsshelp@dailykos.helpscoutapp.com rsshelp@dailykos.helpscoutapp.com KosAbility: A Tour of Murals, Art, Graffiti and Painted Signs on Antique Buildings: F**k ICE!: https://www.dailykos.com/story/2026/2/22/2365962/-KosAbility-A-Tour-of-Murals-Art-Graffiti-and-Painted-Signs-on-Antique-Buildings-F-k-ICE?pm_campaign=blog&pm_medium=rss&pm_source= <p class="is-empty-p"></p> <p><span><span>Welcome to the KosAbility Open Thread this evening! </span></span></p> <p><span><span>KosAbility is by and for people living with disabilities, who love someone with a disability or who want to know issues of living with a disability.  KosAbility publishes on the last Sunday of the month. </span></span></p> <p><span><span>A Call for KosAbility's Writers:</span></span></p> <blockquote> <p><span><span>Do you have an experience or information that you would like to share?</span></span></p> <p><span><span>Besame and I invite you to write a diary for one of our monthly KosAbility meeting. The diary subject is open to anything related to disability or that might interest the disability community. Some examples include research and discoveries, personal stories (my favorite), professional perspectives, caregiving, living or working with a disability and many other subjects. You can send KosAbility (or one of us) a kosmail on your topic and which month you would like.</span></span></p> </blockquote> <p class="is-empty-p"></p> <p><span><span>As many of you know, my life has changed dramatically over these past ten years or so. I have had the opportunity to travel this past year for family duties and vacation. I have visited Sante Fe and Albuquerque in New Mexico; the Grand Canyon and the Petrified Forest in Arizona; Corpus Christi and Padre Island in Texas; Chicago, Illinois (THE Best hot dogs are the Chicago style street hot dogs!); and Memphis, Tennessee, (known for their BBQ and music). </span></span></p> <p><span><span>In my next life, I fantasize on being a professional photographer; I think I have the very raw talent of “seeing things” in my surroundings that I can capture with a photograph. I take a hundred photos, and I may get one that looks good. Allow me to share photos of buildings with painted artwork, antique commercial signs, and some graffiti in Memphis, Tennessee and from Cameron, Texas and my hometown of</span></span><span><span> Garland, Texas.  </span></span></p> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned width-md"><img alt="Painting Lamar Theater Memphis TN" src="https://cdn.prod.dailykos.com/images/1522091/large/paint23.jpg?1769631057" title="Painting Lamar Theater Memphis TN"> <figcaption>Lamar Theatre, Memphis, TN</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned width-md"><img alt="Lamar Theatre" src="https://cdn.prod.dailykos.com/images/1522102/large/paint25.jpg?1769631575" title="Lamar Theatre"> <figcaption>Lamar Theater, Memphis, TN</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Lamar Theatre" src="https://cdn.prod.dailykos.com/images/1522058/large/paint22.jpg?1769623450" title="Lamar Theatre"> <figcaption>Lamar Theater, Memphis, TN</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Lamar Theatre" src="https://cdn.prod.dailykos.com/images/1522105/large/paint14.jpg?1769632434" title="Lamar Theatre"> <figcaption>Lamar Theater, Memphis, TN</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Building Art" src="https://cdn.prod.dailykos.com/images/1524339/large/paint33.jpg?1770307438" title="Building Art"> <figcaption>Lamar Theater, Memphis, TN</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Building Art" src="https://cdn.prod.dailykos.com/images/1524332/large/paint28.jpg?1770306787" title="Building Art"> <figcaption>Downtown Memphis, TN</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Antique Sign for United Warehouse" src="https://cdn.prod.dailykos.com/images/1524340/large/paint8.jpg?1770307911" title="Antique Sign for United Warehouse"> <figcaption>Downtown Memphis, TN</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Building Art" src="https://cdn.prod.dailykos.com/images/1524344/large/paint26.jpg?1770309400" title="Building Art"> <figcaption>Downtown Memphis, TN</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Antique Sign" src="https://cdn.prod.dailykos.com/images/1524347/large/paint2.jpg?1770309530" title="Antique Sign"> <figcaption>Cameron, TX</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Art on the Square" src="https://cdn.prod.dailykos.com/images/1524350/large/Garlandperfectlighting.jpg?1770309859" title="Art on the Square"> <figcaption>Art on the Square<br> Garland, TX</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt=""Please Don" src="https://cdn.prod.dailykos.com/images/1524354/large/54.jpg?1770310532"> <figcaption>“Please Don’t Eat the Moon,” <br> Complete Mural<br> Garland, TX </figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Artwork in Garland, TX" src="https://cdn.prod.dailykos.com/images/1524366/large/53.jpg?1770310792" title="Artwork in Garland, TX"> <figcaption>Garland, TX</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Mural painting on an antique building " src="https://cdn.prod.dailykos.com/images/1524713/large/music.jpg?1770398745" title="Mural painting on an antique building "> <figcaption>Garland, TX</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Mural Painting on a Antique Building" src="https://cdn.prod.dailykos.com/images/1524714/large/IMG_9400.jpeg?1770399001" title="Mural Painting on a Antique Building"> <figcaption>Garland, TX </figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned width-md"><img alt=""Please Don" src="https://cdn.prod.dailykos.com/images/1524352/large/51.jpg?1770310125"> <figcaption>“Please Don’t Eat the Moon,” by Hannah Bull</figcaption> </figure> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Vintage Buildings 1910 on the Square " src="https://cdn.prod.dailykos.com/images/1524716/large/paint5.jpg?1770399191" title="Vintage Buildings 1910 on the Square "> <figcaption>End of a Long Day</figcaption> </figure> </div> <p class="is-empty-p"></p> <p><span><span><span><span>I read an article in Mother Jones that published on February 18, 2026 that is very disheartening to the people that are detained by the Department of Homelands Security which includes Immigration and Customs Enforcement agency (ICE) and Customs and Border Protection (CBP). Julia Metraux writes people with disabilities are especially vulnerable to the denial of care they need for medical services and abuses of in violation of disability civil rights laws in<strong> <a href="https://www.motherjones.com/politics/2026/02/dhs-axed-its-civil-rights-staff-and-opened-the-door-to-a-major-lawsuit/" target="_blank" title="">DHS Axed Its Civil Rights Staff—And Opened the Door to a Major Lawsuit. </a></strong></span></span></span></span></p> <p><span><span><span><span>Below are two short sections from the article:</span></span></span></span></p> <p class="is-empty-p"></p> <blockquote> <p><span><span><span><span>In testimony before Senate Democrats, Tosado gave an example of the essential work she performed in office: investigating the care of a sick infant in family detention. As a result of her investigation, the infant received care, and DHS was compelled to stop placing families in that detention center.</span></span></span></span></p> </blockquote> <p>And:</p> <blockquote> <p><span><span><span><span>DHS’ more public raids and attacks have overshadowed the black box of its detention centers, where disabled ICE detainees continue to report civil rights abuses with no apparent action—like Aliya Rahman, who was dragged out of her car by ICE agents after telling them she was autistic and disabled. Rahman, a US citizen, reported that she was denied communication and mobility support, including a cane, while in detention.</span></span></span></span></p> </blockquote> <p>yes, Fuck ICE</p> rss@dailykos.com (Steven Park) Art FuckICE KosAbility OpenThread _2365962 Mon, 23 Feb 2026 00:00:05 +0000 KosAbility: Open thread https://www.dailykos.com/story/2025/9/28/2345750/-KosAbility-Open-thread?pm_campaign=blog&pm_medium=rss&pm_source= <p><span>Hi folks - Just a simple open thread for this month's meeting of </span>KosAbility<span>.  </span></p> <div> <p class="is-empty-p"></p> <figure class="image-captioned width-xl align-right"><img alt="rainbow2015ed1.jpg" class="width-xl" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <div> <div> <h3>KosAbility Is By And For</h3> <ul> <li><span>People living with disabilities;  </span></li> <li><span>Who love someone with a disability;  or</span></li> <li><span>Who want to know more about the issues.</span></li> </ul> <p>Our discussions are open threads in the context of <strong>this </strong>community.</p> <p style="text-align:center">Feel free to</p> <ul> <li><span>Comment on the diary topic;</span></li> <li><span>Ask questions of the diarist or generally to everyone;</span></li> <li><span>Share something you've learned; or</span></li> <li><span>Gripe about your situation.</span></li> </ul> <h3>Our only rule is to be kind.</h3> <p>Bullies will be ignored and/or obliterated.</p> <p>For more elaboration on our group rule please read <a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">this story</a>.</p> <p>At KosAbility we amicably discuss any and all matters pertaining to health. Our discussions are not medical advice. Medical advice can only be provided by a qualified physician who has examined the patient.  If you have worrisome symptoms please see your doctor!</p> </div> </div> </div> <div> <p class="AlignCenter"><span>All health related discussion welcome!</span></p> </div> rss@dailykos.com (wilderness voice) KosAbility OpenThread _2345750 Sun, 28 Sep 2025 23:00:06 +0000 IAN: September 12, 2025 Pain scales and fatigue. https://www.dailykos.com/story/2025/9/11/2343040/-IAN-September-12-2025-Pain-scales-and-fatigue?pm_campaign=blog&pm_medium=rss&pm_source= <p>Happy Friday! I don’t have any big plans today except to tackle some cleaning if I have the spoons and enough of a lack of pain.  Today we’re going to talk about the effect of fatigue and pain together. Also, the chronic pain scale vs. the ‘traditional’ pain scale. </p> <div> <div> <div> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be<br> added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome everyone who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday Youffraita</p> </div> </div> </div> <div> <p>Tuesday: bigjacbigjacbigjac</p> <p>Wednesday Pam from Calif</p> <p>Thursday art ah zen</p> <p>Friday FloridaSNMOM</p> <p>Saturday FloridaSNDad</p> <p>Sunday loggersbrat<br> <br> First let’s talk about the emoji pain scale pictured above. This is the most vague pain scale, in my opinion. In this pain scale, judging by the pictures, my baseline would be a  6, my good days a 4, and my bad pain days a ten, because often I’m sitting here rocking and in tears at that point.  This scale doesn’t have a number for my WORST pain days when it hurts too much to move or, the couple of times when I was injured and passed out from the pain. Not to mention labor, or gall bladder attacks. Or broken noses, those are really bad too.  See what I mean about the most vague pain scale?  There’s no objective point here, only subjective, and what a doctor thinks of as a ten is probably not what I think of as a ten. <br> <br>  </p> <div class="align-center"> <figure class="image-captioned width-xl"><img alt="Descriptivechronicpainscale.png" class="width-xl" src="https://cdn.prod.dailykos.com/images/1477170/large/Descriptivechronicpainscale.png?1757623059" title="Descriptivechronicpainscale.png"> <figcaption>Descriptive pain scale</figcaption> </figure> </div> <p>This one is a little better. It gives a more detailed description about the level of pain, and it’s more obviously a range rather then a set number. On this scale my baseline is a 5 or 6, it can alternate a bit through the day between the two. A good day is a 3-4. A bad day is an 8 or 9, and my really bad days are a 10, though I don’t bother going to the ER because they won’t do anything anyway.  It still doesn’t cover my worst pain, but it’s a lot more accurate, and is more objective due to the descriptions. This gives doctors a better view of where I am in my daily pain, or why I’m at the doctor concerning an abnormal more severe pain (like when my gall bladder was bad). <br> <br> Here is a video showing the difference between the pain scales, and another descriptive scale, that’s even more objective.  It’s better for acute pain rather than chronic, but still works objectively rather than subjectively, especially at the higher levels.<br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=kJijEGZZbQo" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/kJijEGZZbQo" data-width="500">YouTube Video</a></div> </div> <p> <br> The Chronic illness pain scale is more descriptive, and it goes higher. Why go higher? Because when you live with chronic pain, you adjust to it. That isn’t to say we don’t feel it, but we learn how to function at higher levels of pain. </p> <div class="align-center"> <figure class="image-captioned width-xl"><img alt="ChronicillnesspainscaleJPEG.jpg" class="width-xl" src="https://cdn.prod.dailykos.com/images/1477185/large/ChronicillnesspainscaleJPEG.jpg?1757627974" title="ChronicillnesspainscaleJPEG.jpg"> <figcaption>This one goes higher than the ‘normal’ pain scale. </figcaption> </figure> </div> <p>On this scale a 3 or 4 on the right-hand scale is my normal. A 1 or 2 is a good day. The negative numbers I’ve reached while on pain meds in the hospital, usually by IV.  My bad days are 6-8. The worst days? When I barely get out of bed at all because of pain, are an 8-10. Usually if I’m at a 10 there is something else wrong and contributing (gall bladder pre-removal, umbilical hernia, infection or sprain, etc.) That’s when I go to the ER to make sure nothing is actually wrong, and usually something is. These are my “is it a heart attack/appendicitis” etc. moments. </p> <p>Now we get to factor in another chart. That of fatigue. How severe fatigue is will affect how badly you can manage the pain that day. Fatigue is a problem in and of itself. It makes it harder to focus, harder to be able to get up and do anything, harder to move. When combined with pain, it makes it more difficult to distract from the pain. If you can’t focus, can’t get lost in a book, or a game or even a tv show, you notice the pain more. You’re exhausted, bored out of your mind, focusing more on the pain which makes it subjectively worse, and frustrated that you can’t get done what you feel you should be doing. Often you can’t get out of bed for long, and can’t move around as much, which also can make the pain feel a lot. Pain and fatigue combined make it harder to push through. </p> <div class="align-center"> <figure class="image-captioned width-xl"><img alt="FatigueScale.jpg" class="width-xl" src="https://cdn.prod.dailykos.com/images/1477179/large/FatigueScale.jpg?1757625785" title="FatigueScale.jpg"> <figcaption>Fatigue scale. My good day here is a 2-3. My normal is a 4-5, and bad days are a 8-9. </figcaption> </figure> </div> <p>For me, fatigue varies a lot through the day. I can wake up at a 2, but as soon as I get one thing done, suddenly I’m at 7. I can be at a 6 all morning, then devolve to a 9 and end up in bed all afternoon. I can also wake up at a 9 or 10, stay in bed a few extra hours and be at a 6, then end up at a 5 or back to a 10 by dinner. Sometimes I can be at a 7 and have to go out anyway and push through, but then range from a 9-10 for two days after. If you’ve had severe pneumonia, flu or covid you’ve experienced the higher ends of this scale.  Before my chronic illnesses got bad, a 2-3 would be my normal after a bad day at work. A 1 would be a normal after work. Just for perspective.<br> <br> Once you add pain into the fatigue, everything gets worse. Pain makes the fatigue worse, and the fatigue makes the pain worse. If I come on saying I’m tired today… that means my fatigue scale is probably about a 6 or 7. If I’m in a full on flare, I’ll be at an 8-10, and I probably won’t get on here until later in the day (and some days I think I posted but never did). <br> <br> Part of the reason chronic illness causes depression is all the things you can’t manage to do that you used to be able to do and/or that society insists you should do. I never taught Bit to ride a bike because of my chronic illnesses. By the time she was old enough, I couldn’t move well enough and I got tired too quickly to really teach her. I couldn’t keep up. Things like that cause guilt, and that leads to depression. I worked a lot to remind myself that I made up for it in other ways, like homeschooling her, cooking with her, playing games with her on the Wii, or board games or on the computer. <br> <br> Often times I sit here looking outside and I think.. “We  have a self-propelling mower, I should be able to go out there and get at least a little of it done.” and then I get up and go to the bathroom and almost fall over and have to grab the wall and the bathroom counter, and think “nope, not going to happen.” Or I try to walk across the house with my walker and can’t breathe and get that heavy weight in my chest, and I’m in less humidity and heat than I would be outside. And that causes depression as well. In a society where things are measured by what you do, it’s hard to feel like you’re ‘pulling your weight’ when you can only do a fraction of what you could, or feel you should do. <br> <br> Here is an entirely different scale that should remind me that I can only do what I can. That it’s unreasonable for me to blame myself for not being able to do things: <br>  </p> <div class="align-center"> <figure class="image-captioned width-xl"><img alt="McGillPainIndex.jpg" class="width-xl" src="https://cdn.prod.dailykos.com/images/1477182/large/McGillPainIndex.jpg?1757626759" title="McGillPainIndex.jpg"> <figcaption>This is a helpful scale. </figcaption> </figure> </div> <p>But even then, when I was in labor with Draco, I did laps around Lake Eola park. It was hard, but I did them and breathed through the pain hoping to get it closer to delivery because I had really bad Braxton-Hicks pain. I can’t do that with the fibro pain, especially when you factor in fatigue. <br> <br> So where are you at on the fatigue and pain scales? Are you at 0 most often or higher? The last time I was at a 0 on the pain scale, I was on post-surgery meds in recovery and while in the hospital. Next time you need to use the pain scale, remember the more descriptive scale, rather than just the emoji faces. Everyone deals with pain a little differently, and the more accurate the scale, the better they can help. </p> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned width-xl"><img alt="Mongo1510.jpg" class="width-xl" src="https://cdn.prod.dailykos.com/images/1477197/large/Mongo1510.jpg?1757628946" title="Mongo1510.jpg"> <figcaption>Mongo watching “The dogs were good again this week” by the 15/10 foundation</figcaption> </figure> </div> <p class="is-empty-p"></p> </div> rss@dailykos.com (FloridaSNMOM) ChronicIllness Community IAN ItzlAlertNetwork KosAbility painscales _2343040 Fri, 12 Sep 2025 04:55:12 +0000 IAN: September 5, 2025 A Hard days... week? https://www.dailykos.com/story/2025/9/4/2341892/-IAN-September-5-2025-A-Hard-days-week?pm_campaign=blog&pm_medium=rss&pm_source= <p>Happy Friday! It’s been a week, and I’m glad we’re about to move into a new one. Let’s hope the next week is better in che FLparents. <br> <br>  </p> <div> <div> <div> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be<br> added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome everyone who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday Youffraita</p> </div> </div> </div> <div> <div> <div> <p>Tuesday: bigjacbigjacbigjac</p> <p>Wednesday Pam from Calif</p> <p>Thursday art ah zen</p> <p>Friday FloridaSNMOM</p> <p>Saturday FloridaSNDad</p> <p>Sunday loggersbrat</p> <p class="is-empty-p"></p> <p>The old seat in my wheelchair died if you remember. I got a new seat, installed it, it still wasn’t right, the screws didn’t match up with all the holes, and I wasn’t able to find one, again, that was specific to that model.  It didn’t matter for long though, because Buddy pushed me over as I was going up the steps into the house again. I didn’t get hurt this time, other than a bruise on the back of my arm and my back, and a sore wrist for a couple of days (which is fine now).  But the chair didn’t survive.<br> <br>  </p> <div class="align-center"> <figure class="image-captioned width-xl"><img alt="brokenwheelchair.jpg" class="width-xl" src="https://cdn.prod.dailykos.com/images/1474718/large/brokenwheelchair.jpg?1757027113" title="brokenwheelchair.jpg"> <figcaption>This is one of the back supports. </figcaption> </figure> </div> <p> The seat back that was made for me is fine, just have to take it off this chair. But the chair is toast. Not only is it missing back support (and one push handle) if this broke off, what else on that frame is cracked and waiting to go.<br> <br> We decided to get a new chair, I bought a cheaper one, I really like it and hope it holds up a while, but I’m also going to talk to my primary about ordering me one through Medicaid. That could be as quick as a couple of weeks, or take a few months, so, I have a chair in the meantime. It’s narrower than the old one by two inches, which means it goes through doorways easier.  And it’s got a blue frame.  It’s government name is a Drive Blue Streak model. I’ve named it Bluey, since it’s blue, and we have Heelers.</p> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned width-xl"><img alt="NewwheelchairBluey.jpg" class="width-xl" src="https://cdn.prod.dailykos.com/images/1474721/large/NewwheelchairBluey.jpg?1757027427" title="NewwheelchairBluey.jpg"> <figcaption>Meet Bluey. You can tell by the seat that it’s Pup approved LOL. Yes, that’s Rhenn and Mongo beneath.</figcaption> </figure> </div> <p>I’ve been nursing a migraine for a few days, so there’s that as well. And my lungs have been tight and heavy because of walking around with the walker so much. They are finally starting to feel more ‘normal’ today.  That was part of the decision to get a new chair. Bit is going to cover the water bill, because I spent that money on the chair. Honestly, I was expecting it to be a couple hundred more expensive and was afraid I would have to raid the household account and borrow from that. But the price was better than I thought. <br> <br> I really want to keep the pockets though and the back that was made for me, so I’m going to have to think about that one. Maybe I can alter it to change it to pockets hanging on the back? There’s a pocket on the back of this seat, but it’s shallow and not as easy to find things in because it’s one big pocket across the back. It won’t hold a travel cup upright for example, and my phone gets lost in it.  The pockets made for me are MUCH better. <br> <br> On the bright side, I had wound care today, and that got smaller. So yay for that. We’re hoping it will close up over the winter so we don’t have to go through this cycle of two steps forward over the winter, one step back over the summer. This wound and my auto-immune system don’t like the heat much. <br> <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=Yjyj8qnqkYI" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/Yjyj8qnqkYI" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>Mongo really likes watching these videos. When he hears the narrator’s voice he pays attention to the computer or my phone, and he gets excited and wags at the dogs on the screen. <br> <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=epFX6rZgeXQ" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/epFX6rZgeXQ" data-width="500">YouTube Video</a></div> </div> <p> <br> Things may be getting tense in Chicago in the near future. Please check in with us here folks, if you don’t have another place to check in. We want to be sure everyone is as safe as possible. </p> </div> </div> </div> rss@dailykos.com (FloridaSNMOM) IAN ItzlAlertNetwork KosAbility Woozles _2341892 Fri, 05 Sep 2025 04:55:09 +0000 KosAbility: What Brought You to Kosabilty? https://www.dailykos.com/story/2026/1/25/2341258/-KosAbility-What-Brought-You-to-Kosabilty?pm_campaign=blog&pm_medium=rss&pm_source= <p><span><span>Welcome to the KosAbility Open Thread this evening!</span></span></p> <p><span><span>Allow me to reintroduce myself, for I’ve been doing some serious lurking these past few years. I’ve published five dairies in the last six years and have not published any in the last two. When I published these dairies, I have received emotional support that I needed at the time. So, let’s get started. </span></span></p> <p><span><span>Here is my story:</span></span></p> <p><span><span>I became interested in the disability community in 1992 when I underwent brain surgery for an AVM and had my hemorrhagic stroke during the procedure. Needless to say, the stroke changed my life, affecting my right side and speech. </span></span></p> <p><span><span>I was trained air-conditioning, heating and refrigeration when I started drawing SSDI.  My wife, Charlene (Charlie) and I had two daughters, ages 3 and 5 at the time of the surgery. We became interested in joining a local stroke support organizations in the Dallas, TX area. Charlie went to work for the Stroke Connection Magazine and I went to college to retrain for another vocation.  </span></span></p> <p><span><span>I graduated in 2002 with a degree in Rehabilitation Counseling, where I worked fulltime for two years. I did not have the energy to handle working fulltime, so I went parttime and got back on SSDI, where I spent 12 years in disability employment field. </span></span></p> <p><span><span>I’ve written diaries in the past about having family members with strokes, dementia, broken hip and Alzheimer's disease. My wife and I have been caregivers.</span></span></p> <p><span><span>My wife, Charlie, died of ALS 3 years ago…. I am grateful for receiving tremendous emotional support of the Daily Kos and the KosAbility community. </span></span></p> <p><span><span>Now, that’s my story, what brought you to KosAbility? </span></span></p> <p class="is-empty-p"></p> <div> <div> <h3>KosAbility Is By And For</h3> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://cdn.prod.dailykos.com/images/1519424/large/rainbow2015ed1.jpg?1768937435" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <ul> <li><span>People living with disabilities;  </span></li> <li><span>Who love someone with a disability;  or</span></li> <li><span>Who want to know more about the issues.</span></li> </ul> <p>Our discussions are open threads in the context of<span> </span><strong>this<span> </span></strong>community.</p> <p style="text-align:center">Feel free to</p> <ul> <li><span>Comment on the diary topic;</span></li> <li><span>Ask questions of the diarist or generally to everyone;</span></li> <li><span>Share something you've learned; or</span></li> <li><span>Gripe about your situation.</span></li> </ul> <h3>Our only rule is to be kind.</h3> <p>Bullies will be ignored and/or obliterated.</p> <p>For more elaboration on our group rule please read<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">this story</a>.</p> <p>At KosAbility we amicably discuss any and all matters pertaining to health.<span> </span><u>Our posts and discussions are not to be taken as medical advice. Medical advice can only be provided by a qualified physician who has examined the patient.</u><span> </span> If you have worrisome symptoms please see your doctor!</p> </div> </div> <p class="AlignCenter" style="text-align:center"><span>All health related discussion welcome!</span></p> <p class="is-empty-p"></p> rss@dailykos.com (Steven Park) ALS Caregiving Dementia Disability KosAbility OpenThread stroke _2341258 Mon, 26 Jan 2026 00:00:09 +0000 KosAbility: High usage of acetaminophen associated with more than doubled Alzheimer's risk https://www.dailykos.com/story/2025/8/31/2339849/-KosAbility-High-usage-of-acetaminophen-associated-with-more-than-doubled-Alzheimer-s-risk?pm_campaign=blog&pm_medium=rss&pm_source= <p><span>Last month we looked at <a href="https://www.dailykos.com/stories/2025/7/27/2335204/-KosAbility-Observational-Studies-Do-Not-Be-Misled" target="_blank">how observational studies can mislead</a>. With those lessons in mind, we now look at an observational study worth paying attention to: </span></p> <h3><span><a href="https://www.frontiersin.org/journals/aging-neuroscience/articles/10.3389/fnagi.2023.1193108/full" target="_blank" title="">Chronic pain is a risk factor for incident Alzheimer’s disease: a nationwide propensity-matched cohort using administrative data</a>. </span></h3> <p><span>The study made use of the records of the French national healthcare system. They stratified the results according to the cumulative daily dosage of individual patients: </span></p> <blockquote> <p><span>[O]nly the use of non-opioid analgesics [in this study that refers primarily to acetaminophen and <em>not</em> to NSAIDS such as ibuprofen]... was correlated with a more frequent occurrence of ADRD [</span>Alzheimer’s Disease and Related Dementias<span>], depending on the duration of exposure [</span>non-opioid analgesics: mild exposure = OR 1.76, 95%CI (1.39–2.23); moderate exposure = OR 2.54, 95%CI (2.00–3.24); and strong exposure = OR 2.83, 95%CI (2.23–3.60)]</p> </blockquote> <p><span>From the <a href="https://www.frontiersin.org/journals/aging-neuroscience/articles/10.3389/fnagi.2023.1193108/full#supplementary-material" target="_blank">supplementary data</a> we have:</span></p> <blockquote> <p><strong>Non-opioids</strong><span> =  </span>PARACETAMOL and NEFOPAM (Paracetamol accounts for +90% of cases).</p> </blockquote> <p><span><strong>Note that these are big odds ratios - more than a doubling of risk, at moderate or high exposure. </strong>Recall that in last month's discussion of a poorly done study we had a confidence interval with a low end of 1.01 - barely a valid result because it did not cross under 1.0. Here we see that for moderate </span>exposure<span> and above, the low end of the confidence interval is about 2.0, still a robust result -  double the risk of Alzheimer's or more. </span>These numbers included the effect of both acetaminophen and a small proportion of nefopam. Table 5 shows the increased odds ratio due<em> solely</em> to the effect of acetaminophen and gives similar numbers, with a p value of <.0001:</p> <figure class="image-captioned"><img alt="increased odds ratio of Alzheimer" src="https://cdn.prod.dailykos.com/images/1472421/large/Table5.jpg?1756417825"> <figcaption>Odds ratio of Alzheimer's diagnosis subsequent to acetaminophen use</figcaption> </figure> <p><span>Click to <a href="https://cdn.prod.dailykos.com/images/1472421/original/Table5.jpg?1756417825" target="_blank">embiggen</a>.</span></p> <p><span>Observational studies can be misleading due to confounding, <a href="https://healthunlocked.com/cure-parkinsons/posts/147073985/the-uric-acid-failure-lessons-learned" target="_blank" title="">as we have discovered</a>. So perhaps there's something about chronic pain that is causative of Alzheimer's? But in the same study NSAIDs were found to have an inverse association with Alzheimer's: </span></p> <blockquote> <p>the use of NSAIDs [other than acetaminophen] was correlated with a lower presence of ADRD and depended on the duration of exposure [mild exposure = OR 0.93, 95% CI (0.82–1.05); moderate exposure = OR 0.67, 95% CI (0.54–0.85); and strong exposure = OR 0.72, 95% CI (0.58–0.89)]</p> </blockquote> <p><span>From the <a href="https://www.frontiersin.org/journals/aging-neuroscience/articles/10.3389/fnagi.2023.1193108/full#supplementary-material" target="_blank" title="">supplementary data</a> we have:</span></p> <blockquote> <p><span><span><strong>NSAIDs</strong> = ... ASPIRIN... CELECOXIB, DICLOFENAC... IBUPROFEN, KETOPROFEN ... NAPROXEN...</span></span></p> </blockquote> <p><span>Their usage reduced the likelihood of a subsequent diagnosis of Alzheimer's. An astute commenter pointed out that because NSAIDs reduce inflammation and acetaminophen does not, this could be a reason for the improvement. So let us also take a look at the effect of opioids, which do not reduce inflammation:</span></p> <blockquote> <p>opioids: mild exposure = OR 1.10, 95%CI (0.97–1.24); moderate exposure = OR 1.21, 95%CI (1.00–1.47); and strong exposure = OR 1.24, 95%CI (1.02–1.49)]</p> </blockquote> <p><span>This is a weak result - the odds ratio ranges from 1.1 to 1.24 and the confidence interval comes close to, or actually crosses underneath 1.0. Now, let us view all these results together in the same table and compare directly:</span></p> <div class="table-wrapper"> <table cellpadding="0" cellspacing="0" width="308"> <tbody> <tr style="height:15.6pt"> <td style="height:15.6pt; width:73pt"></td> <td class="AlignCenter" colspan="3" style="width:159pt"><span>Odds Ratios vs.Exposure</span></td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt"><span>Substance<span> </span></span></td> <td>mild</td> <td><span>moderate</span></td> <td><span>strong</span></td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt"><span>NSAIDs<span> </span></span></td> <td align="right">0.93</td> <td align="right">0.67</td> <td align="right">0.72</td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt"><span>opioids</span></td> <td align="right">1.1</td> <td align="right">1.21</td> <td align="right">1.24</td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt"><span>acetaminophen</span></td> <td align="right">1.76</td> <td align="right">2.54</td> <td align="right">2.83</td> </tr> </tbody> </table> </div> <p><span>Let us allow for the possibility that the favorable effect of NSAIDs is due to their anti-inflammatory effect. Instead we can compare acetaminophen to opioids, which do not reduce inflammation. For moderate or strong exposures,<em> the odds of a subsequent Alzheimer's diagnosis are more than double for acetaminophen over that of opioid use</em>.  </span></p> <div> <div> <p><span>In addition, we have an animal model showing a one time high dose of acetaminophen causes the death of neurons in the brain, at levels that do not cause liver failure: </span><a href="https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0015360&type=printable" target="_blank"><em>Acetaminophen Induces Apoptosis in Rat Cortical Neurons</em></a></p> </div> </div> <p><span><strong>So acetaminophen stands out as uniquely neurotoxic. </strong></span></p> <p><span>The chronic pain study was a big study:</span></p> <blockquote> <p>During the inclusion period (2006–2010), 15,136 individuals over 50 years old and with chronic pain were identified. After matching, 13,596 chronic pain and 40,788 control individuals were analyzed. As expected from the matching procedure, cases and controls were comparable in terms of age (66 years), sex (62% female), and Charlson score* (0.4). Chronic pain and control individuals had a median follow-up time of 10.2 years.</p> </blockquote> <p>*The <a href="https://reference.medscape.com/calculator/879/charlson-comorbidity-index-score-cci-score" target="_blank">Charlson Comorbidity Index</a></p> <blockquote> <p><span><span>the most widely used comorbidity index used to determine survival rate (1yr and 10yr) in patient with multiple comorbidities.</span></span></p> </blockquote> <p><span>How much exposure qualifies as moderate or strong exposure to acetaminophen?</span></p> <blockquote> <p>The cumulative dose was computed during the study time window and converted it into a number of defined daily doses (DDDs) by dividing it by the average recommended daily dose for this product, as previously published by <a href="https://www.frontiersin.org/journals/aging-neuroscience/articles/10.3389/fnagi.2023.1193108/full#ref7" target="_blank">Billioti de Gage et al. (2014)</a>. Therefore, one DDD corresponded to an average one-day exposure. </p> </blockquote> <p><span>The indicated reference was not forthcoming as to the dosage of acetaminophen they designated as a defined daily dose. However, we do have this study of <a href="https://bpspubs.onlinelibrary.wiley.com/doi/pdfdirect/10.1111/bcp.12957" target="_blank" title="">Usage patterns of paracetamol in France</a>, done around the period covered by the study of hand, which tells us: </span></p> <blockquote> <p>paracet<u>amol … defined daily doses (DDD,<strong> 3 g</strong>)</u></p> </blockquote> <p><span><u>Moderate ex</u>posure is defined as a cumulative dose equivalent to 3 to 18 months of exposure at the 3 gram defined daily dose. This would amount to 270 grams or more cumulative dose. Strong exposure is defined as more than 18 months of such exposure.</span></p> <p><span>With that said, according to this study, even mild exposure incurs an average 76% increase in subsequent Alzheimer's risk. So there is not a threshold below which acetaminophen usage is safe.</span></p> <h3><span>NAC may mitigate acetaminophen toxicity</span></h3> <p><span>Liver toxicity is a result of a toxic metabolite of acetaminophen depleting stores of glutathione. The essential building block of glutathione is N-acetylcysteine (NAC). The <a href="https://pubmed.ncbi.nlm.nih.gov/36034775/" target="_blank">medical treatment for acetaminophen overdose</a> is high dose NAC via IV. </span></p> <p><span>Oral NAC is safe </span>up to 3000 mg/day according to<span> </span><a href="https://link.springer.com/content/pdf/10.1007/s40264-020-01026-y.pdf" target="_blank">Safety of N‑Acetylcysteine at High Doses in Chronic Respiratory Diseases: A Review</a>:</p> <blockquote> <p>N-Acetylcysteine (NAC) is widely used in respiratory medicine, with a maximum licensed dose in chronic use of 600 mg/day; however, some clinical trials have studied the efficacy of NAC at higher doses. The aim of this review was to evaluate the adverse effects profile of NAC at higher than the standard dose in chronic respiratory diseases to establish a risk–benefit ratio in increasing the daily dose; therefore, studies using NAC at a dose of at least 600 mg/day were selected. Forty-one articles where NAC<br> has been used at 600 mg and above, up to 3000 mg/day, and with a specific report on safety, were considered. Most of the studies used oral NAC and were conducted on patients with chronic obstructive pulmonary disease, idiopathic pulmonary fibrosis, bronchiectasis, chronic bronchitis and cystic fibrosis. In general, the safety profile was similar at both the high and standard doses with the oral formulation; gastrointestinal symptoms were reported but they were no more common than in the control group</p> </blockquote> <p><span>More on <a href="https://www.mdpi.com/2076-3921/10/6/967/pdf" target="_blank">NAC safety</a>:</span></p> <blockquote> <p>N-acetylcysteine (NAC) is a medicine widely used to treat paracetamol overdose and as a mucolytic compound. It has a well-established safety profile, and its toxicity is uncommon and dependent on the route of administration and high dosages. Its remarkable antioxidant and anti-inflammatory capacity is the biochemical basis used to treat several diseases related to oxidative stress and inflammation. The primary role of NAC as an antioxidant stems from its ability to increase the intracellular concentration of glutathione (GSH), which is the most crucial biothiol responsible for cellular redox imbalance.</p> </blockquote> <p><span>Oral NAC supplementation for the purpose of<em> preventing</em></span> acetaminophen induced liver toxicity<span> has yet to be the subject of a human study, but in an <a href="https://herzenberglab.stanford.edu/sites/g/files/sbiybj27506/files/media/file/lah567.pdf" target="_blank">animal study it </a>worked:</span></p> <blockquote> <p><span>formulating APAP with NAC is logical and, as we show here in a mouse model, is effective in preventing APAP toxicity. Thus, toxic oral APAP doses sufficient to cause severe widespread liver damage do not cause significant damage when administered concurrently with equal amounts of NAC, that is, in the NAC-APAP treated animals, hepatic transaminases [liver enzymes] increase only marginally and liver architecture remains fully intact. Thus, we conclude that concomitant oral dosing with APAP and NAC can provide a convenient and effective way of preventing toxicity associated with large dosage of APAP.</span></p> </blockquote> <p><span>So this may serve to reduce the likelihood of Alzheimer's if you have to take acetaminophen.</span></p> <p><span><a href="https://pubmed.ncbi.nlm.nih.gov/33413696/" target="_blank">NAC also improves the effectiveness of a</a><a href="https://pubmed.ncbi.nlm.nih.gov/33413696/" target="_blank">cetaminophen</a>. So if you <em>must</em> undertake ongoing treatment with acetaminophen, you should also consider taking NAC, which is available over the counter. In addition — </span></p> <h3><span>NAC itself is anti-inflammatory</span></h3> <p><a href="https://www.mdpi.com/2077-0383/13/14/4127" target="_blank"><span>For respiratory conditions:</span></a></p> <blockquote> <p><span>NAC’s anti-inflammatory activity is noteworthy, ... In ex vivo models of COPD exacerbation, the anti-inflammatory effects have been observed even at very low doses, especially with prolonged treatment.... The unique combination of mucolytic, antioxidant, anti-infective, and anti-inflammatory properties positions NAC as a safe, cost-effective, and efficacious therapy for a plethora of respiratory conditions.</span></p> </blockquote> <p><span><a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/luts.12425" target="_blank">For prostatitis:</a></span></p> <blockquote> <p>over the 12-week treatment, NAC+tamsulosin was statistically superior to placebo+tamsulosin in reducing the total NIH-CPSI score, pain subscore, and quality-of-life subscore (<em>P</em> value <.001). Further, after 12 weeks, more patients in the NAC+tamsulosin group than in the placebo+tamsulosin group met the responder criterion, defined as a decrease of at least 6 points in the NIH-CPSI total score (65.6% vs 29.0%). A more favorable outcome was also noted in the NAC+tamsulosin group regarding the number of patients reporting moderate or marked improvement in symptoms (62.5% vs 25.80%)</p> </blockquote> <p><span>So, NAC alone may serve the purpose of pain relief instead of acetaminophen.</span></p> <p><span>In addition, several compounds that have been found to be effective in relieving osteoarthritis pain are identified <a href="https://www.dailykos.com/stories/2021/6/27/2037145/-KosAbility-Alleviating-Arthritis-Comparing-Supplements" target="_blank">here</a>.</span></p> <p><span>This material cross posted, in part,<a href="https://healthunlocked.com/cure-parkinsons/posts/152019578/evidence-acetaminophen-associated-with-an-epidemic-of-alzheimers-nac-may-mitigate.-use-to-relieve-tremor-at-your-own-risk." target="_blank" title=""> here</a>.</span></p> <p><span><strong>Moral of the story: </strong>If you must take acetaminophen, consider taking NAC as well. If you do not need to take acetaminophen, weigh the risk carefully in light of other treatment possibilities. Consult with your doctor before making any changes. </span></p> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <div> <div> <h3>KosAbility Is By And For</h3> <ul> <li><span>People living with disabilities;  </span></li> <li><span>Who love someone with a disability;  or</span></li> <li><span>Who want to know more about the issues.</span></li> </ul> <p>Our discussions are open threads in the context of <strong>this </strong>community.</p> <p style="text-align:center">Feel free to</p> <ul> <li><span>Comment on the diary topic;</span></li> <li><span>Ask questions of the diarist or generally to everyone;</span></li> <li><span>Share something you've learned; or</span></li> <li><span>Gripe about your situation.</span></li> </ul> <h3>Our only rule is to be kind.</h3> <p>Bullies will be ignored and/or obliterated.</p> <p>For more elaboration on our group rule please read <a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">this story</a>.</p> <p>At KosAbility we amicably discuss any and all matters pertaining to health. <u>Our posts and discussions are not to be taken as medical advice. Medical advice can only be provided by a qualified physician who has examined the patient.</u>  If you have worrisome symptoms please see your doctor!</p> </div> </div> <p class="AlignCenter"><span>All health related discussion welcome!</span></p> <p class="is-empty-p"></p> rss@dailykos.com (wilderness voice) acetaminophen Alzheimers KosAbility NAC NSAIDs Recommended _2339849 Sun, 31 Aug 2025 23:00:09 +0000 KosAbility: Observational Studies - Do Not Be Misled! https://www.dailykos.com/story/2025/7/27/2335204/-KosAbility-Observational-Studies-Do-Not-Be-Misled?pm_campaign=blog&pm_medium=rss&pm_source= <p><span>Observational studies determine associations. They do not prove causation. People can be misled into thinking there is causation when there is not. Even medical research professionals have made this mistake. </span></p> <p><span>This is part one of a two-part series. In part two we will examine an observational study worth paying attention to. Here we look at cases where these studies find associations that are not causation. Some ways this can happen:</span></p> <ol> <li><span><span><span><strong>Reverse causation</strong> - the putative cause is actually the effect of the undesired condition</span></span></span></li> <li><span><span><span><strong>Confounding</strong> - The actual cause is associated with the putative cause. A simple example of this would be an association of ashtrays with lung cancer. A more detailed real example to follow.</span></span></span></li> <li><span><span><span><strong>Abuse the data</strong> - Someone determined to find a particular cause guilty can keep testing until they find an adverse association. Not a valid procedure. I explain why below.</span></span></span></li> </ol> <p><strong><span>Why do observational studies?</span></strong></p> <p><span><em>Interventional</em> studies prove causation, by having some participants receive placebo indistinguishable from an actual treatment, and comparing results. However, it is unethical to subject study participants to exposures suspected to cause harm, even if others are doing it voluntarily. In such cases an observational study is necessary - monitor the results of the exposure, and compare to a similar unexposed population. To avoid the kinds of problems cited above, this must be supplemented with a good animal model proving causation. A good animal model means realistic dosages - too much of anything, even water, can be adverse. </span></p> <p><span>Another reason for doing an observational study is to check on long-term effects. Running an interventional study of 20 years’ duration is not practical.  Instead, one can check on medical records, or use the data from long-term running observational studies like the <a href="https://www.framinghamheartstudy.org/" target="_blank">Framingham study.</a> If the study is of adverse effects of a disease treatment, it is also necessary to check the effect of alternative treatments. If the alternative treatment does not cause the adverse effect, that eliminates confounding due to the effect of the disease.</span></p> <p><u><strong><span><span>Reverse causation example</span></span></strong></u></p> <p><span>It is well established that Parkinson's is associated with low uric acid levels. Some investigators who were persuaded that this was a cause of Parkinson's embarked upon a large  phase 3 trial, raising uric acid levels in Parkinson's patients. It </span><span>was halted early for futility. <strong>The treatment caused kidney stones in some patients and resulted in an increasing rate of Parkinson's progression</strong><em><u>.</u></em> </span></p> <p><strong><span>What went wrong?</span></strong></p> <p><span>For starters, uric acid is a waste product, and high levels are associated, and in some cases proven, to be a cause of cardiovascular disease, stroke, kidney disease, and gout. </span></p> <p><span>In the matter of Parkinson's, levodopa is the mainstay treatment because it crosses the blood-brain barrier, whereupon it is converted into the missing dopamine. It turns out that protein competes with levodopa for absorption. The worse the Parkinson's, the more frequently patients need levodopa. They correspondingly reduce their protein intake. Less protein means less uric acid. <strong>Thus we have reverse causation</strong> - Parkinson's results in lower uric acid in accord with the severity of the condition, for those patients who take levodopa. I wrote about this in more detail here, with links to the medical literature: <a href="https://healthunlocked.com/cure-parkinsons/posts/147073985/the-uric-acid-failure-lessons-learned" target="_blank">The Uric Acid Failure: Lessons Learned</a></span></p> <p><u><strong><span><span>Confounding Example</span></span></strong></u></p> <p><span>A while back we had a pair of studies on cardiovascular disease. One study, in the </span><span>US</span><span>, found an association between egg consumption and increased cardiovascular disease. Another study, in </span><span>China</span><span>, found egg consumption was associated with less cardiovascular disease.</span></p> <p><strong><span>What happened?</span></strong></p> <p><span>It turns out that the true villains are advanced glycation endproducts. These are vascular toxins that result from high temperature cooking of fatty protein, crispy bacon being one example. In the </span><span>US</span><span>, bacon consumption is highly correlated with egg consumption. In </span><span>China</span><span> bacon is a rarity. <a href="https://jamanetwork.com/journals/jama/fullarticle/189529?appId=scweb&appId=scweb" target="_blank">A different </a></span><a href="https://jamanetwork.com/journals/jama/fullarticle/189529?appId=scweb&appId=scweb" target="_blank"><span>US</span></a><span><a href="https://jamanetwork.com/journals/jama/fullarticle/189529?appId=scweb&appId=scweb" target="_blank"> trial that did look at bacon consumption exonerated the eggs. </a>So this was a case of <strong>confounding</strong>. I wrote about this in detail, with citations to the medical literature, here: <a href="https://www.dailykos.com/stories/2019/4/28/1846499/-KosAbility-A-Tale-Of-Two-Studies-Leads-To-A-Deeper-Understanding-Of-Cardiovascular-Disease" target="_blank">A Tale Of Two Studies Leads To A Deeper Understanding Of Cardiovascular Disease</a></span></p> <p><u><strong><span><span>Abuse the data </span></span></strong></u></p> <p><span>(If your eyes glaze over here it is okay to skip on down to the summary)</span></p> <p><span>A test of association, or causation, is usually regarded as valid if the probability of a false positive is less than 5%. This is the p<.05 standard. Suppose we run two different tests of whether a putative cause is associated with different adverse effects. If we get at least one positive result and each test was run according to the p<.05 standard, are we entitled to claim p<.05 for the overall result? No! </span></p> <p><span>If each test has a 5% probability of yielding a false positive, the probability that at least one of the two tests yields a false positive is about 10%. It is slightly less because the case of two false positives counts only once and not twice. (The exact probability of at least one false positive in this case is 9.75%). </span></p> <p><span>So as we keep testing, the likelihood of finding a false positive keeps rising. Eventually we'll get a positive result, almost certainly false. In such cases the <em>reported</em> p value is typically close to 0.05 (but the real p value is much higher), and the increased odds of an adverse effect (odds ratio) are small. </span></p> <div> <div> <p><strong>An example of abusing the data:</strong></p> <p>Regarding acetaminophen use during pregnancy, the purpose of this discussion is not to vindicate it, but to highlight how <em>not</em> to study it: <em><a href="https://pubmed.ncbi.nlm.nih.gov/36170224/" target="_blank" title="">Maternal use of acetaminophen during pregnancy and neurobehavioral problems in offspring at 3 years: A prospective cohort study</a></em></p> <blockquote> <p>Child behavioral problems were measured at the age of 3 years, using the 7 syndrome scale scores from the Child Behavior Checklist (CBCL) for ages 1 ½ to 5.</p> </blockquote> <p>They tested for 7 different adverse effects individually, instead of one<span> binary result -  autism diagnosis, or not.</span></p> <blockquote> <p>After adjustment for prenatal stress and other confounders, 2 syndrome scales remained significantly higher in children exposed to acetaminophen: sleep problems (aOR = 1.23, 95% CI = 1.01–1.51) and attention problems (aOR = 1.21, 95% CI = 1.01–1.45).</p> </blockquote> <p><span>They got a nominally positive result for 2 tests out of 7. </span>Usually a p-value is given for such results as well as the confidence interval.  This is notably absent - <strong><span>no p-values appear anywhere in this study</span>.</strong></p> <p>The 95% confidence interval (CI) means 95 times out of 100 this interval will contain the actual result - adjusted odds ratio (aOR) in this case. <span>They adjusted the odds ratios to account for confounders such as psychosocial stress during pregnancy. which is good as far as it goes, but no adjustment was made for multiple tests. </span></p> <p>The confidence interval is calculated using a formula which includes the standard deviation and the number of samples. If the confidence interval crosses unity that means the test has failed statistical significance. Notice that in these cases the bottom of the reported confidence interval was 1.01, which is the lowest value which can be considered to be passing this test.</p> <p><span>An adjustment </span>to the confidence interval for selecting 2 positive results from 7 tests <span>is necessary. Unlike with p-values, it is not obvious how to do so, and online search was not helpful. </span><em>Had any such adjustment been made, these results would have failed statistical significance.</em></p> <p><span>These odds ratios show a 20% increase in risk, which is not that high, unless you're one of the unlucky 20%. <em>If</em> that 20% number is real. It's time to sit up and take notice <em>when</em> a <em>single</em> test shows something like a <em>doubling</em> of risk, which will be the subject next month.</span></p> <p><strong><span>Summary of statistical differences between weak and strong observational studies:</span></strong></p> <div class="table-wrapper"> <table cellpadding="0" cellspacing="0" width="619"> <tbody> <tr style="height:15.6pt"> <td style="height:15.6pt; width:188pt"><strong><span>Item  </span></strong></td> <td style="width:120pt"><strong><span> </span>Weak <span> </span></strong></td> <td style="width:156pt"><strong>Strong</strong></td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt"><span>Number of adverse conditions/diagnoses tested</span></td> <td><span>Many</span></td> <td>1</td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt"><span>Number of positive results</span></td> <td style="width:120pt"><span>Few<span> </span></span></td> <td>1 (only one tested)</td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt; width:188pt">p-value<span> </span></td> <td><span>close to .05 or missing<span> </span></span></td> <td><<.05</td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt">Odds ratio</td> <td>~1.2</td> <td>>2</td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt">Low end of 95% confidence  interval<span>  </span></td> <td>very close to 1.0<span>  </span></td> <td>comfortable distance from 1.0</td> </tr> </tbody> </table> </div> <p class="is-empty-p"></p> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <h3>Kosability Is By And For</h3> <ul> <li><span>People living with disabilities;  </span></li> <li><span>Who love someone with a disability;  or</span></li> <li><span>Who want to know more about the issues.</span></li> </ul> <p>Our discussions are open threads in the context of <strong>this </strong>community.</p> <p style="text-align:center">Feel free to</p> <ul> <li><span>Comment on the diary topic;</span></li> <li><span>Ask questions of the diarist or generally to everyone;</span></li> <li><span>Share something you've learned; or</span></li> <li><span>Gripe about your situation.</span></li> </ul> <h2>Our only rule is to be kind.</h2> <p>Bullies will be ignored and/or obliterated.</p> <p>For more elaboration on our group rule please read <a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">this story</a>.</p> <p>At KosAbility we amicably discuss any and all matters pertaining to health. Our discussions are not medical advice. Medical advice can only be provided by a qualified physician who has examined the patient.  If you have worrisome symptoms please see your doctor!</p> </div> </div> <p class="AlignCenter"><span>All health related discussion welcome!</span></p> <p class="is-empty-p"></p> rss@dailykos.com (wilderness voice) association causation confounding correlation KosAbility Medicine observational observationalstudies Rescued _2335204 Sun, 27 Jul 2025 23:00:03 +0000 KosAbility: Extreme or prolonged heat worsens mental health and accelerates aging https://www.dailykos.com/story/2025/6/29/2330674/-KosAbility-Extreme-or-prolonged-heat-worsens-mental-health-and-accelerates-aging?pm_campaign=blog&pm_medium=rss&pm_source= <p>As I write this on Saturday, the temp outside my NorCal home is 101<sup>o</sup>F but this isn’t official heat wave with NWS warnings and temporary cooling centers set up for people without ACs. The official heat wave is in the midwest and eastern <a href="https://www.usatoday.com/story/news/weather/2025/06/28/thunderstorms-tornado-severe-weather-forecast/84398569007/" target="_blank">states</a> and <a href="https://www.theguardian.com/environment/2025/jun/28/europe-on-alert-as-first-major-heatwave-of-2025-pushes-temperatures-to-42c" target="_blank">Europe</a>. Because this is our expected weather, I’ve already made the usual summer adaptations to maximize repelling heat and retaining cool, such as those I included in my previous heat wave story in late June 2022: <a href="https://www.dailykos.com/stories/2022/6/26/2106377/-KosAbility-Since-it-s-only-going-to-get-hotter-let-s-learn-how-to-cope-with-heat-waves" target="_blank">Since it’s only going to get hotter, let’s learn how to cope with heat waves.</a></p> <p>I return to this topic three years later with new warnings about the dangers of extreme or prolonged heat: unacknowledged mental health consequences and accelerated aging impacts comparable to those from smoking or heavy use of alcohol.</p> <p>Older adults are especially vulnerable because aging reduces one’s ability to effectively regulate body temperature. Also, older people are more likely to take drugs such as beta blockers and diuretics that make it harder to cope with high temps, so even moderate heat can be a health risk.</p> <p>The takeaway message for everyone on earth, even people who live where high temps in summer are unremarkable, is to take high temps seriously. Helpful measures include more cooling centers open to everyone, improved regulations that protect outdoor workers, awareness campaigns so people at greater risk understand the consequences, and the basic tricks we Californians already implement. </p> <div class="table-wrapper"> <table class="dk5-table"> <thead> <tr> <th style="background-color:#83baf3"> <p class="AlignCenter">KOSABILITY IS BY AND FOR</p> <p class="AlignCenter">PEOPLE LIVING WITH DISABILITIES;  </p> <p class="AlignCenter">WHO LOVE SOMEONE WITH A DISABILITY;  OR</p> <p class="AlignCenter">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</p> <p class="AlignCenter">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF <strong>THIS </strong>COMMUNITY</p> </th> </tr> </thead> <tbody> </tbody> </table> </div> <h4></h4> rss@dailykos.com (Besame) Aging ClimateChange Disability GlobalWarming HeatWave KosAbility MentalHealth _2330674 Sun, 29 Jun 2025 23:00:09 +0000 IAN: May 9, 2025 I'll take Chronic Illness for $500 Alex. https://www.dailykos.com/story/2025/5/8/2321238/-IAN-May-9-2025-I-ll-take-Chronic-Illness-for-500-Alex?pm_campaign=blog&pm_medium=rss&pm_source= <div> <div> <div> <div> <div> <p>Happy Friday! Hopefully my Friday is going better than my Thursday did. Chronic condition flare ups suck. Stuff I wanted to get done didn’t get done, some things that needed to get done, didn’t get done. Not to mention brain fog and boredom. <br> <br> May is Chronic Illness awareness month, and May 12 is Fibromyalgia awareness day. I have several Chronic illnesses, which is actually pretty common, if you have one, getting diagnosed with another, or 3 or 4 others, is pretty normal. <br> I have FND, which I’ve posted about pretty extensively in the past. I have Graves disease, and though I no longer have a living thyroid, it is causing other issues now, like chronic wounds. I have asthma and COPD, most people know about asthma. You can get COPD from many things, not just smoking. I’ve never smoked, but I have lung damage from asthma, bronchitis and pneumonia as well as from working in drive-thrus and being exposed to exhaust fumes for decades.  I also have arthritis in my hands, knees, shoulders, hips and spine. I also have diabetes, primarily due to a med for my asthma and COPD.  My base pain is what most people would consider a 4 or 5. Chronic fatigue is a big issue, as is chronic brain fog which affects memory and cognitive ability. <br> <br> When you have chronic illnesses, people say things “well at least it’s not cancer” or “at least it’s not terminal”. And yet, consider the implications of living in pain, fatigued, and with brain fog for the rest of the decades of your life.  Some people explain it as being awake for 3 days with insomnia and then getting the flu while working 12 hour shifts in a mine.  That’s your life, forever. You will have some better days and some worse days when you can’t even get out of bed for more than an hour, or enough to go to the bathroom. Don’t get me wrong, cancer is bad, it’s a horrible disease, and no one should have to suffer with that, it’s something no one would actually want. But Chronic illness is a different kind of bad. It never goes away, it’s not terminal, so  it’s a LONG term disease.  If you’re sick, people are compassionate, they wait for you to get better, they bring you things to help, they understand if you are slow, sluggish, snappy. </p> <p> If you have chronic illness, people are compassionate, <a href="https://themighty.com/topic/chronic-illness/chronic-illness-disability-things-not-to-say/" target="_blank" title="">for a little while</a>. But they forget, they become less patient, they keep expecting you to ‘get better’. And when you don’t, they blame  you for it. If you have to cancel appointments, events, meet ups, they blame you. If you can’t get out of bed, you’re told to ‘suck it up’ to ‘stop being lazy’, and that it ‘can’t be that bad’. <br> Many doctors and nurses ignore your symptoms, or blame all new symptoms on your chronic illness rather than considering that there may be another cause. People with chronic illnesses are more likely to be gaslit and told to seek counciling because it’s ‘all in their head’. People with chronic illnesses are more likely not to have other disease diagnosed, like cancer, kidney stones, or gall stones, until things are way beyond the early stages and harder to treat, partly because, when you’re in pain all the time, a new pain will go unnoticed for a while. And partly because doctor’s automatically attribute new pain to just another flare up. </p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"> <figcaption></figcaption> </figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> </div> </div> </div> </div> </div> <div> <div> <div> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank" title="">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank" title="">loggersbrat</a></p> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=YoRe6JnNQu4" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/YoRe6JnNQu4" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=zRmAipo8f70" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/zRmAipo8f70?start=90" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=tlgZjDuypB0" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/tlgZjDuypB0?start=72" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=rJEcJKflGjs" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/rJEcJKflGjs" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=FT0a7GVGFSc" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/FT0a7GVGFSc" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=cJZpvwUsQYY" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/cJZpvwUsQYY" data-width="500">YouTube Video</a></div> </div> <p> Here is an article from The Mighty on <a href="https://themighty.com/topic/chronic-illness/what-to-say-and-not-say-to-someone-with-a-chronic-illness/" target="_blank" title="">what to say (and not to say</a>) to people with chronic illnesses. There are ways to be supportive, and there are ways people try to be supportive that actually aren’t. <br> <br> Finding doctors who understand chronic illnesses and are willing to treat patients with mulitples can be very difficult. We’re listed as the ‘too complex’ patients, or the ‘difficult’ patients because we have to advocate for ourselves. Other times doctors have outdated knowledge or don’t believe our chronic illnesses really exist. Managing symptoms, doctors, and life can be a full time job, one without pay and with minimal rewards, all while dealing with symptoms that, if they weren’t chronic, would be treated as an emergency. </p> </div> </div> </div> rss@dailykos.com (FloridaSNMOM) brainfog ChronicIllness Community Fibromyalgia IAN ItzlAlertNetwork KosAbility medgaslighting _2321238 Fri, 09 May 2025 04:55:06 +0000 05.10.2025:IAN "New Gadget for me." https://www.dailykos.com/story/2025/5/9/2318417/-05-10-2025-IAN-New-Gadget-for-me?pm_campaign=blog&pm_medium=rss&pm_source= <div> <p>.</p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"> <figcaption></figcaption> </figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> </div> <div> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank">bigjacbigjacbigjac</a></span></p> <p>Wednesday<span> </span><a href="https://www.dailykos.com/users/Pam%20from%20Calif" target="_blank">Pam from Calif</a></p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank">loggersbrat</a></p> <p class="is-empty-p"></p> <p>Greetings my friends.  Welcome to another Saturday.  I hope that your week has been a good one, and I am so grateful to all of you for coming to check in with me.</p> <p>I am sad to say that not so long ago, my beloved , Star Trek inspired flip phone died, and not in the way that most insisted it would.  I kept being told that the hinge that gave it its flip feature, would be what failed and made me regret purchasing it, but no, what happened is that the case I used failed, it came off the phone in a fall, and thus the phone broke.  So after five years of loyal service, I have retired my flip phone, and upgraded to a Pixel 9,  So  in one move, I changed phones, and ecosystems.  Still android of course, but Google is so far different from my any of the Samsung phones that I have had over the last several decades that it presents a significant learning curve.</p> <p>So far, I have learned to switch to dark mode.  I have changed ring and text tones.  I have enlarged and changed the default fonts, found a bit of software to turn the inbuilt camera int a magnifier, and learned to use the AI Assistant, Gemini, to read some of my messages as well as to make calls/</p> <p>If any of you have tips that will make this new phone more useful to me, I would love to hear them.</p> </div> rss@dailykos.com (FloridaSNDad) IAN KosAbility Technology _2318417 Sat, 10 May 2025 04:55:04 +0000 04.19.2025: IAN "Self Care is Important Too." https://www.dailykos.com/story/2025/4/18/2313337/-04-19-2025-IAN-Self-Care-is-Important-Too?pm_campaign=blog&pm_medium=rss&pm_source= <div> <p>.</p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"> <figcaption></figcaption> </figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> </div> <div> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank">bigjacbigjacbigjac</a></span></p> <p>Wednesday<span> </span><a href="https://www.dailykos.com/users/Pam%20from%20Calif" target="_blank">Pam from Calif</a></p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank" title="">loggersbrat</a></p> <p class="is-empty-p"></p> <p>Greetings, friends, and welcome.  Thank you so very much for stopping by to check in.  Congratulations on making it to another Saturday.</p> <p>Sometimes, the most difficult thing we can do, is take time to give attention to ourselves.  From our youngest years most of us are told that taking care of ourselves makes us selfish, and the very tone of the word tells us this is a bad thing, and to be avoided.  But if we do not take care of ourselves, then we will not have the strength or ability to take care of anyone else.  Anyone who has ever flown, knows this one… “Please put on your own oxygen math, before tending to those around you.”</p> <p>It wasn’t so long ago that taking care of myself was one of the hardest things.   All the details were just things that took time out of my day that might better be spent doing almost anything else.  Problem being that if I didn’t do those things, I got weaker, sicker, and the wound did not heal.  </p> <p>One of the best tools I have found was shown to me then.  Finch, is very much like the odd pocket pets, or Tamagotchi toys that were so prevalent when my children were younger.  With an ap that runs either on your Apple, or Android phone, you get points and achievements for taking care of yourself, and in doing so, helping your little friend grow and explore the world.</p> <p>If you have a mobile phone, then you can go to your ap store and search for Finch.  Otherwise, just Go <a href="https://finchcare.com/" target="_blank">Here</a>, and start taking care of yourself and your new best friend!</p> </div> rss@dailykos.com (FloridaSNDad) IAN KosAbility Self-Care _2313337 Sat, 19 Apr 2025 04:55:17 +0000 KosAbility: Using "AI" for research yields wrong answers. Often. https://www.dailykos.com/story/2025/3/30/2312085/-KosAbility-Using-AI-for-research-yields-wrong-answers-Often?pm_campaign=blog&pm_medium=rss&pm_source= <p><span>What currently passes for AI - large language model chat bots - simply find likely patterns of words. They do not apply reasoning nor do they maintain an internal model of reality. I participate in a<a href="https://healthunlocked.com/cure-parkinsons/posts" target="_blank"> Parkinson's patients' forum</a> and find that I have to regularly correct wrong AI results. All examples given here are from posts or comments that people actually made, mistakenly accepting a false result given by AI. Before I continue, a bit of background is in order. </span><a href="https://en.wikipedia.org/wiki/Decarboxylation" target="_blank">Per Wikipedia:</a> </p> <blockquote> <p><strong>Decarboxylation</strong> is a <a href="https://en.wikipedia.org/wiki/Chemical_reaction" target="_blank">chemical reaction</a> that removes a <a href="https://en.wikipedia.org/wiki/Carboxyl_group" target="_blank">carboxyl group</a> and releases <a href="https://en.wikipedia.org/wiki/Carbon_dioxide" target="_blank">carbon dioxide</a> (CO<sub>2</sub>)... Enzymes that catalyze decarboxylations are called <a href="https://en.wikipedia.org/wiki/Decarboxylase" target="_blank">decarboxylases</a></p> </blockquote> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Decarboxylation " src="https://cdn.prod.dailykos.com/images/1412135/large/Decarboxylation_reaction.png?1742761921" title="Decarboxylation "> <figcaption></figcaption> </figure> </div> <p><a href="https://healthunlocked.com/cure-parkinsons/posts/151550519/i-asked-gemini-ai-does-ceylon-cinnamon-inhibit-decarboxylation" target="_blank"><span>First example, as reported by the user:</span></a></p> <blockquote> <p>I asked Gemini AI: Does Ceylon cinnamon inhibit decarboxylation?</p> <p><span>AI's answer: “Yes, certain compounds found in Ceylon Cinnamon, particularly cinnamaldehyde, have been shown to inhibit amino acid decarboxylase activity.”</span></p> </blockquote> <p>Gemini<span> gave a <a href="https://journals.asm.org/doi/full/10.1128/aem.70.10.5750-5755.2004" target="_blank">reference. Here is </a><em>everything</em> the reference has to say regarding </span>cinnamaldehyde and<span> d</span>ecarboxylation:</p> <blockquote> <p>As observed with eugenol, the possibility that the mechanism of cinnamaldehyde activity involves inhibition of cell wall synthesis (2.36 mM, <em>B. cereus</em>) (<a href="https://journals.asm.org/doi/full/10.1128/aem.70.10.5750-5755.2004#core-R13" target="_blank">13</a>) or inhibition of biosynthetic enzymes (>7.5 mM, histidine decarboxylase) (<a href="https://journals.asm.org/doi/full/10.1128/aem.70.10.5750-5755.2004#core-R29" target="_blank">29</a>)<strong> is unlikely</strong> because of the rapidity of ATP inhibition or depletion.<span>[emphasis added]</span></p> </blockquote> <p>Gemini<span> did not understand that the "is unlikely" negates what preceded it. This is what you get from a system that does not understand or reason - “is unlikely" is merely another text string.</span></p> <p><span>Unfortunately reporting on AI is made difficult by the fact that it is a moving target. Gemini has changed its output and <a href="https://gemini.google.com/app/0c1d6cf0385949c1" target="_blank">now says</a> there is a lack of evidence on the subject. See below for a discussion of the results of most current attempts to improve AI.</span></p> <p><span>What ensued in the comments on this post was much of AI boosting by AI fans, which <a href="https://healthunlocked.com/cure-parkinsons/posts/151550519/i-asked-gemini-ai-does-ceylon-cinnamon-inhibit-decarboxylation?responses=151552022" target="_blank">culminated in a comment that included</a>:</span></p> <blockquote> <p><span>Antibacterial effects: <strong>Research by Zainal-Abidin et al. (2013) showed that cinnamaldehyde in cinnamon bark oil inhibits amino acid decarboxylase activity in oral bacteria</strong>, contributing to its antimicrobial properties. This is because decarboxylases are involved in bacterial amino acid metabolism and survival. [emphasis added]</span></p> </blockquote> <p><span>Evidently the poster of the comment did not check the Gemini provided reference, <span>entitled:<em> Anti-Bacterial Activity of Cinnamon Oil on Oral Pathogens</em>, by Zainal-Abidin et al</span>. <a href="https://isfta.com/wp-content/uploads/2021/11/Anti-Bacterial-Activity-of-Cinnamon-Oil-on-Oral-Pathogens.pdf" target="_blank">It</a><span><a href="https://isfta.com/wp-content/uploads/2021/11/Anti-Bacterial-Activity-of-Cinnamon-Oil-on-Oral-Pathogens.pdf" target="_blank"> can be found here</a>. It is a very fine paper, and I was pleased to discover that cinnamon has antibacterial properties against caries causing bacteria. <strong>The only problem with this reference; there was no discussion of decarboxylase activity. This study did not say what Gemini claimed it did. </strong>This is like the episode of </span></span><a href="https://youtu.be/oqSYljRYDEM?si=3XFMqhhdTZQQMzAT" target="_blank">How to Use ChatGPT to Ruin Your Legal Career</a>, where<span><span> AI made up case law, much to the regret of the attorneys who submitted it.</span></span></p> <p><span>So the AI boosters, in their attempt to tout the benefits of AI, demonstrate again that AI gives wrong answers. Plus, those <strong>who should know better often fail to check</strong>, even at risk of peak embarrassment.</span></p> <h3><span>AI is getting worse instead of better</span></h3> <p><u><strong><a href="https://arstechnica.com/science/2024/10/the-more-sophisticated-ai-models-get-the-more-likely-they-are-to-lie/" target="_blank"><span>The more sophisticated AI models get, the more likely they are to lie:</span></a></strong></u></p> <blockquote> <p><span>AI models are not really intelligent, not in a human sense of the word. They don’t know why something is rewarded and something else is flagged; all they are doing is optimizing their performance to maximize reward and minimize red flags. When incorrect answers were flagged, getting better at giving correct answers was one way to optimize things. The problem was getting better at hiding incompetence worked just as well. Human supervisors simply didn’t flag wrong answers that appeared good and coherent enough to them. In other words, if a human didn’t know whether an answer was correct, they wouldn’t be able to penalize wrong but convincing-sounding answers.</span></p> <p>Schellaert’s team looked into three major families of modern LLMs: Open AI’s ChatGPT, the LLaMA series developed by Meta, and BLOOM suite made by BigScience. They found what’s called ultracrepidarianism, the tendency to give opinions on matters we know nothing about. It started to appear in the AIs as a consequence of increasing scale, but it was predictably linear, growing with the amount of training data, in all of them. <strong>Supervised feedback “had a worse, more extreme effect,”</strong> Schellaert says. The first model in the GPT family that almost completely stopped avoiding questions it didn’t have the answers to was text-davinci-003.<strong> It was also the first GPT model trained with reinforcement learning from human feedback....</strong></p> <div> <p>Instead, in more recent versions of the AIs, <strong>the evasive “I don’t know” responses were increasingly replaced with incorrect ones</strong>. And <strong>due to supervised training used in later generations, the AIs developed the ability to sell those incorrect answers quite convincingly.</strong> Out of the three LLM families Schellaert’s team tested, BLOOM and Meta’s LLaMA have released the same versions of their models with and without supervised learning. In both cases, supervised learning resulted in the higher number of correct answers, but also in a higher number of incorrect answers and reduced avoidance.<strong> The more difficult the question and the more advanced model you use, the more likely you are to get well-packaged, plausible nonsense as your answer."</strong></p> </div> </blockquote> <p><span>Can it get even worse? Oh yes. </span></p> <h3><a href="https://www.turnto.ai/parkinsons/q-and-a/diet/why-should-vitamin-b6-be-avoided" target="_blank"><span>Let's package up some AI specifically for health research</span></a><span>. </span></h3> <p><strong><span>What could go wrong?</span></strong></p> <p><span>Some background is in order here. Vitamin B6 participates as a coenzyme in over 100 enzymatic reactions. In the process it is inactivated.<a href="https://healthunlocked.com/cure-parkinsons/posts/150251197/vitamin-b2-deficiency-can-cause-b6-toxicity-pwp-are-commonly-deficient-in-b2." target="_blank"> It is recycled to the active form in a loop that requires vitamin B2</a>. For healthy people, the minute quantities provided in the diet are adequate. <a href="https://healthunlocked.com/cure-parkinsons/posts/136869228/levodopa-medications-and-vitamin-b6" target="_blank">Levodopa medication, the mainstay for Parkinson's patients, depletes vitamin B6.</a> For patients taking large amounts of levodopa medication, vitamin B6 supplementation is essential. <a href="https://healthunlocked.com/cure-parkinsons/posts/150202284/for-people-with-parkinsons-taking-levodopa-medication-the-danger-of-b6-deficiency-is-dire-and-vastly-outweighs-the-danger-of-b6-excess" target="_blank">Otherwise B6 can be depleted with dire results</a>. Pyridoxine, the inactive form of vitamin B6, is common in small quantities in cheap vitamin supplements. <a href="https://healthunlocked.com/cure-parkinsons/posts/140776498/the-cause-of-vitamin-b-6-toxicity-updated" target="_blank">In large quantities it is toxic because it substitutes for the active form of B6. </a>The active form of vitamin B6 is known as P5P, or PLP. It is nontoxic and is the form that occurs naturally in the diet. It is also readily available as a supplement. All links in this paragraph are to my writing, supported by references to primary sources -  research reported in peer reviewed medical journals. I provide an</span> <a href="https://healthunlocked.com/cure-parkinsons/posts/136869228/levodopa-medications-and-vitamin-b6" target="_blank">overview of vitamin B6 in Parkinson's here</a>.</p> <p><a href="https://www.turnto.ai/parkinsons/q-and-a/diet/why-should-vitamin-b6-be-avoided" target="_blank">The</a><a> “turnto” AI </a><a href="https://www.turnto.ai/parkinsons/q-and-a/diet/why-should-vitamin-b6-be-avoided" target="_blank">says</a>:</p> <blockquote> <p>Why should vitamin B6 be <strong>avoided</strong> in Parkinson's disease?</p> </blockquote> <p><span>As stated above,<strong> </strong>failure to supplement B6 in Parkinson's patients taking levodopa medication can have<strong> </strong><a href="https://karger.com/crn/article/14/2/291/822669/Refractory-Seizures-Secondary-to-Vitamin-B6" target="_blank">dire consequences</a><strong><a href="https://karger.com/crn/article/14/2/291/822669/Refractory-Seizures-Secondary-to-Vitamin-B6" target="_blank">, </a></strong><a href="https://karger.com/crn/article/14/2/291/822669/Refractory-Seizures-Secondary-to-Vitamin-B6" target="_blank">including intractable epileptic seizures.</a> </span>It continues:</p> <blockquote> <p>Vitamin B6, also known as <strong>pyridoxine</strong>...</p> </blockquote> <p><span>As discussed above, t</span>his is only one version of vitamin B6<strong>, the toxic one,</strong> which should not be used. Then<strong>:</strong></p> <blockquote> <p>Vitamin B6 can <strong>interfere</strong> with the effectiveness of levodopa. </p> </blockquote> <p>Wrong. Reality: vitamin B6 is<em> </em><strong>required</strong> for conversion of levodopa into dopamine: <a href="https://www.apdaparkinson.org/article/levodopa-dosing-and-food-intake/" target="_blank">“Vitamin B6 drives the conversion of levodopa to dopamine</a>.”</p> <p>Next: </p> <blockquote> <p>when levodopa is combined with carbidopa, vitamin B6 supplements may be taken <strong>safely</strong>. </p> </blockquote> <p>Wrong. Vitamin B6 taken with carbidopa results in the two <strong>combining together, inactivating both:</strong> “<a href="https://www.apdaparkinson.org/article/levodopa-dosing-and-food-intake/" target="_blank">carbidopa irreversibly binds Vitamin B6</a>” They should not be taken at the same time. Separate by 2 hours or by a meal.</p> <p><strong><span>So we have four wrong instances of medical advice, shamelessly provided, all in a single AI post. Advice that, if taken, could have dire consequences</span></strong></p> <p><span>From an article at Ars Technica: </span></p> <h3><a href="https://arstechnica.com/ai/2025/03/why-do-llms-make-stuff-up-new-research-peers-under-the-hood/?comments-page=1#comments" target="_blank"><span>Why do LLMs make stuff up?</span></a></h3> <blockquote> <p>Derec01</p> <p><a href="https://arstechnica.com/ai/2025/03/why-do-llms-make-stuff-up-new-research-peers-under-the-hood/?comments-page=1#comments" target="_blank">I work in the field and get very frustrated at the framing of the question </a>"Why do LLMs make stuff up?".<strong> It presupposes that "making stuff up" is an aberrant choice or bug, and that if we just fix a few bugs, the output would be truthful naturally.<br> <br> A much more valid to ask "Why would the output of an LLM be close to truth?"</strong> They are distributions over outputs, extrapolating from anything they've been trained on. It's a miracle they are often as accurate as they are. Bringing source data, knowledge graphs, etc. into context and extended compute can be a start, but you have to rigorously drive these things towards truth, no one should be surprised that extrapolating text alone would be inaccurate. <span>[Emphasis added]</span></p> </blockquote> <p><strong><u><span><span>Conclusion</span></span></u></strong></p> <p><span><span>What we know of as AI is a threat, not because it is smart,<em> but because it is dumb.</em> It pollutes our knowledge with lies. If you want to do research and get correct answers, avoid AI. I use <a href="https://scholar.google.com/?hl=en" target="_blank">Google Scholar</a>. If you use Google Search, always append your search terms with "-ai" to keep the garbage out. </span></span></p> <hr> <div> <hr> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> </div> <div> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">THIS STORY</a>.</p> <p class="is-empty-p"></p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> </div> <p class="AlignCenter"><span>All health related discussion fair game!</span></p> <p class="is-empty-p"></p> rss@dailykos.com (wilderness voice) AI Health KosAbility Medicine Rescued Research _2312085 Sun, 30 Mar 2025 23:00:17 +0000 04.05.2025: IAN "Playstation gives us a new way to play." https://www.dailykos.com/story/2025/4/4/2311915/-04-05-2025-IAN-Playstation-gives-us-a-new-way-to-play?pm_campaign=blog&pm_medium=rss&pm_source= <div> <p>.</p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"> <figcaption></figcaption> </figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> </div> <div> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank">bigjacbigjacbigjac</a></span></p> <p>Wednesday<span> </span><a href="https://www.dailykos.com/users/Pam%20from%20Calif" target="_blank">Pam from Calif</a></p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank">loggersbrat</a></p> </div> <p>Greetings Friends!  Welcome to another Saturday, and Thank you for stopping by to check in. </p> <p>I am more than sure that by now you all know that I am a gamer geek.  I spend most of my spare time, when I am not working on course work, or writing, playing one game or another.  What you may or may not know is that for the majority of my life, games have meant my PC.  Yes. I am a sucker for a good Pinball table. and I still have an Atari plug and play here somewhere, but for the most part, I play on the pc. and that is because my pc is far and away the easiest to make accessible.</p> <p>However, it looks like that may be changing.  Playstation is working hard to bring gaming to disabled gamers like me, with their Playstation Access Controller.  With an easy to grip joystick controller, and oversized buttons that are easy to read, remap, and trigger, the Access Controller brings console gaming one step closer to being inclusive for all gamers.  </p> <p>Now, if it wasn’t close to three times the price of a controller for everyone else, that would make things even better!  Still, progress is progress, even if it only comes in small steps.</p> <p><a href="https://direct.playstation.com/en-us/buy-accessories/access-controller?fbclid=IwZXh0bgNhZW0CMTEAAR2jPNvOPRussbo48PZ3w82OcooWExJfckAPL2zrl5cN8CcG8haxjj1nJpY_aem_G1KOKy9KfYRP4pW9YiotCg" target="_blank" title="">PlayStation Access!</a></p> <p class="is-empty-p"></p> rss@dailykos.com (FloridaSNDad) Access IAN KosAbility Playstation _2311915 Sat, 05 Apr 2025 04:55:19 +0000 KosAbility: Safeguarding our sanity during trying times https://www.dailykos.com/story/2025/2/23/2305471/-KosAbility-Safeguarding-our-sanity-during-trying-times?pm_campaign=blog&pm_medium=rss&pm_source= <p><span>What we do to maintain our mental health is necessarily a personal matter. What I suggest here is a menu of ideas that have helped me personally, rather than a prescription:</span></p> <ul> <li><span><span><span>Regulate news consumption: Online at DailyKos and elsewhere, we select what we want to expose ourselves to. On YouTube, the algorithm shows us more of whatever we watch. If I click on something I do not want to see more of, I remove it from my viewing history. TV news is an entirely different matter - the content is intended to provoke anxiety and return viewing. Best avoided in my opinion.</span></span></span></li> </ul> <p class="is-empty-p"></p> <ul> <li><span><span><span>Include uplifting items in media viewing, especially before bedtime. During our idle time the mind will naturally review events that transpired over the course of the day. This influences dreams. So I find it very worthwhile to fill my mind with as much uplifting material as I can, especially before bedtime. </span></span></span></li> </ul> <p class="is-empty-p"></p> <ul> <li><span><span><span>Do not create flame wars. If I feel moved to disagree with somebody online, I have found it to be really helpful to find a way to disagree that is supportive of good feelings for the other party. This can take the form of pointing out where I agree, first, or finding a bit of humor if it occurs to me. This can also mean linking and block quoting from a respectable source, which helps to keep it from being taken personally. If I find myself provoked and angry, I type out a response fully expressing myself - and delete it. Getting entangled in online disputes used to take up a lot of my mental energy. As of late that drain has been thankfully absent. I have found it to be really worth the effort to take care with my disagreements. Years ago my co-administrator Besame also gave some very good advice on this subject <a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">here.</a></span></span></span></li> </ul> <p><span><span><span></span></span></span></p> <ul> <li><span><span><span>Have regular sources of personal upliftment. This could be anything - music, nature, friends, family, community. Personally I'm a devoted practitioner of Qigong, the cultivation of the subtle energy known in the east as Qi, also spelled Chi. As a result of Parkinson's insomnia I usually wake around 2 or </span><span>3:00 a.m.</span><span> I spend the rest of my resting time in Chi meditation. It feels like Divine Love and it feels like home. Works for me. (Note - here at KosAbility we are respectful of such personal choices. I'm aware that in the broader community some individuals feel compelled to ridicule spirituality. If this is you, know that such a response speaks to who you are rather than your target.)</span></span></span></li> </ul> <p><span><span><span></span></span></span></p> <ul> <li><span><span><span>Have a way of keeping perspective on the current political situation. This could be anything - history, astronomy, nature, you name it. Personally, I regard life as </span><span>Earth</span> <span>School</span><span> - like a challenging first person video game for personal development. I expanded upon this idea in the diary, </span></span></span><a href="https://www.dailykos.com/stories/2023/12/31/2214677/-Bored-With-Heaven-Try-Earth-School" target="_blank">Bored With Heaven? Try Earth School!</a></li> </ul> <p><span>I am not a mental health professional and the foregoing is not intended as professional mental health advice. <a href="https://mcpress.mayoclinic.org/mental-health/managing-your-mental-health-when-is-it-time-to-get-help/" target="_blank">When to seek professional help:</a></span></p> <blockquote> <p><span>Every mental health condition is different. However, in general, it might be a good idea to seek professional help if you experience:</span></p> <ul> <li><span><span><span>Marked changes in personality, eating or sleeping patterns</span></span></span></li> <li><span><span><span>An inability to cope with problems or daily activities</span></span></span></li> <li><span><span><span>Feeling of disconnection or withdrawal from normal activities</span></span></span></li> <li><span><span><span>Unusual or “magical” thinking</span></span></span></li> <li><span><span><span>Excessive anxiety</span></span></span></li> <li><span><span><span>Prolonged sadness, depression or apathy</span></span></span></li> <li><span><span><span>Thoughts or statements about suicide or harming others</span></span></span></li> <li><span><span><span>Substance misuse</span></span></span></li> <li><span><span><span>Extreme mood swings</span></span></span></li> <li><span><span><span>Excessive anger, hostility or violent behavior</span></span></span></li> </ul> </blockquote> <p><span>What do you think?</span></p> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">THIS STORY</a>.</p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> <p><span>Open thread. All health and diary related discussion welcome!</span></p> <p class="is-empty-p"></p> rss@dailykos.com (wilderness voice) coping Health KosAbility MentalHealth Stress _2305471 Mon, 24 Feb 2025 00:00:04 +0000 KosAbility: Radon and Non-smoker's lung cancer https://www.dailykos.com/story/2025/1/26/2298961/-KosAbility-Radon-and-Non-smokers-lung-cancer?pm_campaign=blog&pm_medium=rss&pm_source= <p><span>Radon gas is an extremely potent carcinogen if it gets past the skin. After the initial decay, releasing an alpha particle, several more decays occur in rapid succession, releasing two more alpha particles. All this originates from a single radon atom.</span></p> <div class="align-center"> <figure class="image-captioned"><img alt="Radon decay chain" src="https://cdn.prod.dailykos.com/images/1391051/large/decay.png?1737750626" title="Radon decay chain"> <figcaption>Radon Decay Chain</figcaption> </figure> </div> <p><span>The sum of the half-lives of these subsequent 5 radon decays is under an hour. After the initial decay, the resulting isotopes are chemically reactive, so they may bind to exposed tissue. The quasi-stable result is an isotope of lead, which does not help either.</span></p> <blockquote> <p><a href="https://cdp.dhs.gov/shared/se/courses/default/AWR-923-W%2005122021%201.2-20210512144644/groups/30.html" target="_blank">Hazards of Alpha Radiation</a></p> <p>Even the most energetic <strong>alpha particle</strong> from radioactive decay can be stopped by the outermost layer of dead skin that covers the body. Therefore, exposure to most alpha particles originating outside the body is not a serious hazard.</p> <p>On the other hand, if alpha-emitting radioactive materials are taken inside the body (for example, by ingestion or inhalation), they can be the most damaging source of radiation exposure. The short range of the alpha particle causes the damaging effects of the radiation to be concentrated in a very localized area.</p> </blockquote> <p>Radon is… the second lung cancer risk factor after smoking, and the <a href="https://www.mdpi.com/2072-6694/14/13/3142" target="_blank">first one in non-smokers.</a> Approximately<a href="https://www.sciencedirect.com/science/article/abs/pii/S1040842824001069" target="_blank"> 10–20% of lung cancer cases </a>worldwide can be attributed to radon exposure. Increased exposure to radon… is the <a href="https://www.jsr.org/hs/index.php/path/article/view/4420" target="_blank">number one cause</a> of lung cancer in non-smokers. According to the National Cancer Institute, around 15,000 to 22,000 deaths in the US are caused by radon each year. Radon exposure is the main source of ionizing radiation exposure … approximately <a href="https://link.springer.com/content/pdf/10.1007/s12094-023-03308-0.pdf" target="_blank">50% of all the ionizing radiation</a> received during a lifetime is the result of radon exposure.</p> <p><u>Measurement</u></p> <p><span>Granitic soils release significant amounts of radon as shown in the map at top. How does a person discover the level of radon in their residence? I personally found a radon meter to be an extremely good investment. It can be moved to various locations around the house, make seasonal comparisons, and check the effect of interventions. I found the cheaper one-time spot tests that get sent to a lab to be inadequate - mine was rejected and not even tested. Apparently I waited too long to use it. So I bought</span> the <a href="https://www.airthings.com/home?gQT=2" target="_blank">Airthings Corentium</a> Home Radon Detector<span>. Currently $99. Not cheap, but it was worth it to me.</span></p> <p><u><span>What constitutes a dangerous level of radon gas?</span></u></p> <p><span>The Environmental Protection Agency has set<a href="https://www.epa.gov/sites/default/files/2016-12/documents/2016_a_citizens_guide_to_radon.pdf" target="_blank"> 4 picocuries per liter (pCi/L) as the action level</a> to remedy radon gas concentration. At this concentration, lifetime risk of lung cancer due to radon is about 7 per thousand in non-smokers, and 62 per thousand in smokers. </span></p> <p><u><span>What does one do about high concentrations of radon gas?</span></u></p> <p>It can be as simple as leaving the crawl space vents open all year round. If for some reason something like that is not possible, or not effective, here are other solutions:</p> <blockquote> <p><a href="https://www.radonsolutionscalifornia.com/our-services/residential-radon-mitigation/" target="_blank">With a Sub Slab System</a>, a hole is cut through the concrete slab and a cavity is formed in the soil beneath the hole. A PVC pipefitting is then set into the hole and attached to the depressurization system. The depressurization system creates a vacuum under the slab, this vacuum causes Radon as well as other soil gasses, to move towards the suction point where it is collected and exhausted safely above the home.</p> <p>In a crawlspace application, a perforated pipe is laid throughout the space and then covered with a high-density plastic which is sealed to the foundation. This creates a vapor barrier. When the depressurization system is connected to the perforated pipe under the barrier the soil gas is collected and exhausted safely above the home</p> </blockquote> <p><span>I hope this has been helpful!</span></p> <div> <div> <p class="is-empty-p"></p> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> </div> <div> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">THIS STORY</a>.</p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> </div> </div> <p class="is-empty-p"></p> rss@dailykos.com (wilderness voice) KosAbility lungcancer Non-smokers Radon _2298961 Mon, 27 Jan 2025 00:00:08 +0000 11.30.2024: IAN "Star Trek's Troubling History With Disability." https://www.dailykos.com/story/2024/11/29/2285644/-11-30-2024-IAN-Star-Trek-s-Troubling-History-With-Disability?pm_campaign=blog&pm_medium=rss&pm_source= <div> <p>.</p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"> <figcaption></figcaption> </figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> </div> <div> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank" title="">bigjacbigjacbigjac</a></span></p> <p>Wednesday<span> </span><a href="https://www.dailykos.com/users/Pam%20from%20Calif" target="_blank">Pam from Calif</a></p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank" title="">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank">loggersbrat</a></p> <p class="is-empty-p"></p> <p>Greetings friends, and welcome to another Saturday.  Congratulations!  We have made it through another week, and here we are, together again.</p> <p>Anyone who has known me for, more than ten minutes knows that Star Trek is one of my favorite things, and has been for most of my life.  But as we grow, we often discover that even the best things, even the things we love the most, have problems, and the same goes for Star Trek.  </p> <p>One of the most problematic things about Star Trek, is the ways in which it deals with people who have disabilities.  From constantly treating disabled characters as if their only goal should be to be “cured”, to playing to some of the most out of date and shameful tropes concerning disabled characters, to the fact that most of these characters are played by able bodied actors, Trek’s history with the disabled is absolutely shameful.</p> <p>The Disability Action Research Kollective is a group of disabled writers, writing ‘zines on topics that interest and effect those of us with disabilities, and I was shown the first volume of their Star Trek magazine not long ago.  While I do not agree with -all- of their points, I will admit they have some compelling arguments, and I decided I should share the DARK, and their Zine with all of you.  As always, Link below.</p> <p class="is-empty-p"></p> <p><a href="https://libcom.org/article/star-trek-and-disability-vol-1" target="_blank">Star Trek and Disability Vol. 1 (DARK)</a></p> </div> rss@dailykos.com (FloridaSNDad) IAN KosAbility Recommended Star-Trek _2285644 Sat, 30 Nov 2024 05:55:13 +0000 KosAbility: Two Snow Cones Make You Blind https://www.dailykos.com/story/2024/9/29/2270583/-KosAbility-Two-Snow-Cones-Make-You-Blind?pm_campaign=blog&pm_medium=rss&pm_source= <div style="text-align:start"><span>Thirteen years ago I wrote a diary for KosAbility entitled <strong>“</strong></span><strong><a href="https://www.dailykos.com/stories/2011/2/20/946271/-">KosAbility: Flour, snow cones and blindness</a>.” </strong>  It was about the snow cone shape of my right eye. </div> <div style="text-align:start"> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="Why a keratoconus eye is likened to a snow cone in descriptions." src="https://cdn.prod.dailykos.com/images/1347963/large/snowconeshaped.png?1726947308" title="Why a keratoconus eye is likened to a snow cone in descriptions."> <figcaption>A snow cone and a keratoconus eye.</figcaption> </figure> </div> <p class="is-empty-p"></p> <p>The reference to a snow cone was my youngest son’s description of my right eye when he was about 5 or 6 trying to understand what was different about mom’s eye.</p> <p>.</p> <p>It is a rather apt description as the back of the eye, retina, is the rounded ice and flavoring part and the cornea is the pointy paper cone part.  The pointy part of the cornea generally falls somewhere in the pupil area or over the iris.  For me it is dead center of the pupil.</p> <p>.</p> <p>A lot of things have happened in the intervening 13 years. But the facts about my case have remained the same.</p> <p>.</p> <p>I was diagnosed first with astigmatism in my late 30s/early 40s.  Eventually it became so bad that our <span>optometrist</span> was unable to offer any additional correction in my prescription. That day I sat alone and quiet in our living room thinking of all the implications.  I was told to protect my left eye at all costs since that was the only eye I was seeing out of. (<em>I have, except for that holiday dinner making <a href="https://www.dailykos.com/stories/2011/2/20/946271/-" target="_blank">incident.</a>) </em></p> <p><em>.</em></p> <p>In 2003 my oldest son had a paintball accident with a paintball being shot into his eye.  He wasn’t wearing any protective equipment at that moment. He was taken to and treated at <strong><a href="https://masseyeandear.org/" target="_blank" title="">Massachusetts Eye and Ear Infirmary (MEEI).</a></strong></p> <p><strong>.</strong></p> </div> <div style="text-align:start">During one of his appointments the doctor treating him saw that my eyes were two different colors and had me go to make an appointment with an eye specialist.  I did, and I was diagnosed with a word I had never heard before; “keratoconus.” <span>(carrot- a - cone - us).</span></div> <div style="text-align:start"><span>.</span></div> <div style="text-align:start"></div> <div style="text-align:start">The difference in color was because each eye, specifically the cornea, was shaped differently.</div> <div style="text-align:start"> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned"><img alt="notmaeyecompar.jpg" src="https://cdn.prod.dailykos.com/images/1347973/large/notmaeyecompar.jpg?1726949763" title="notmaeyecompar.jpg"> <figcaption>A normal eye and cornea compared to a keratoconus eye and cornea.</figcaption> </figure> </div> <p class="is-empty-p"></p> </div> <div style="text-align:start"> <div><span>It is rare, with fewer than<span> </span>200,000<span> cases in the </span>US per year.  It is also called </span>conical cornea</div> <blockquote> <div style="text-align:left"> <div> <div> <div> <div><strong><span>Keratoconus</span></strong></div> </div> </div> <div>Keratoconus (ker-uh-toe-KOH-nus) is an eye condition in which your cornea — the clear, dome-shaped front of your eye — gets thinner and gradually bulges outward into a cone shape.</div> </div> </div> <div style="text-align:left"> <div> <div> <div id="kp-wp-tab-cont-overview"> <div> <div> <div> <div id="kp-wp-tab-overview"> <div> <div> <div> <div> <div> <div> <div> <div> <div> <div> <div> <p>A cone-shaped cornea causes blurred vision and may cause sensitivity to light and glare. Keratoconus usually affects both eyes. However, it can affect one eye more than the other. It generally begins to affect people between the late teens and 30 years of age. The condition may progress slowly for 10 years or longer.</p> - <strong><a href="https://www.mayoclinic.org/diseases-conditions/keratoconus/symptoms-causes/syc-20351352?utm_source=Google&utm_medium=abstract&utm_content=Keratoconus&utm_campaign=Knowledge-panel" target="_blank">Mayo Clinic</a></strong></div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </blockquote> <p>My left eye didn’t show any signs of having keratoconus, and through the years it seemed as that eye stabilized while seeing out of my right eye has devolved to  nothing being in focus even an inch from my face.  Just specific globs of color, light and darkness. <em>(I go into more description of what I see in the<strong><a href="https://www.dailykos.com/stories/2011/2/20/946271/-" target="_blank"> older diary</a>,  </strong>it’s<strong> </strong> worse now.)</em></p> <p><em>.</em></p> <p class="is-empty-p"></p> </div> <div style="text-align:start">Through the years I have learned how to compensate for the loss of eyesight and lack of <span>depth perception</span>.  Driving in the left lane is a favorite because I can scan easier and nothing then sneaks up on my right or left side. I use shadows to help me determine distance. I stop more frequently at yellow lights when people think I have enough time to go through, and I also wait to turn left longer than many people have patience for. Oh well.</div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">And I still avoid driving at night, especially with a lot of people driving around with <strong><a href="https://shop.advanceautoparts.com/r/car-projects/how-to-aim-and-adjust-headlights" target="_blank">un-aimed/unadjusted headlights</a> </strong>these days.</div> <blockquote> <div style="text-align:start"><span style="text-align:start">In the early stages of keratoconus, you might be able to correct vision problems with glasses or soft contact lenses. Later, you may have to be fitted with rigid, gas permeable contact lenses or other types of lenses, such as scleral lenses. If your condition gets worse, you may need a cornea transplant. </span>- <strong><a href="https://www.mayoclinic.org/diseases-conditions/keratoconus/symptoms-causes/syc-20351352?utm_source=Google&utm_medium=abstract&utm_content=Keratoconus&utm_campaign=Knowledge-panel" target="_blank">Mayo Clinic</a></strong></div> </blockquote> <div style="text-align:start">My specialist at MEEI did try to fit me with a rigid contact lens, but I couldn’t tolerate it. Any other form of lens was not considered viable.</div> <div style="text-align:start"></div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">Since I live outside Boston we decided to get a new ophthalmologist (a group) with admitting privileges at MEEI,  nearer to home.  We did, but for a while there they would send me back into MEEI because my right eye would beat their diagnostic machines.  I just can’t focus on that little red dot, and my eye will unintentionally go looking for it. </div> <div style="text-align:start"></div> <div style="text-align:start"></div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">If I had had this diagnosis in 1980 I don’t know if I could have finished college, and I actually didn’t, but for a different reason. Now it helped greatly when finishing my degree. </div> <div style="text-align:start"></div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">Since I don’t have a diagnosis for dyslexia (because they didn’t do that in dinosaur times) the functional blindness of my right eye actually gave me all the same disability benefits at the two schools I attended. Scanned/digitized textbooks and handouts for my tablet or allowed to use a huge magnifier(since most textbooks and some novels were not yet available for Kindle, etc.), smart pen and the tablet that goes with it, permission to record my classes, audible books (sometimes read by computer. (Please AI make it less boring and monotone), and more time for turning in assignments and doing exams.   </div> <div style="text-align:start"></div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">I don’t know if our ophthalmologist group invested in new machines that can handle my eye because of me, or they just wanted to get newer, stronger machines, but whatever the case I have not been sent to MEEI for a long time.</div> <div style="text-align:start"></div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">Generally I have been very good at making my eye appointments.  Last March was a regular check up when they asked me if I had noticed any change in my eye sight.  This is a tough question because I have to figure out what is migraine related, because often I have sight issues with migraines whether I have accompanying pain or not. Or if it IS something not right with my eyes.  There have been a few times when it felt like my eye lens itself had a steam build up, and I just wanted to wipe it away like you do the bathroom mirror after a shower. I also have to keep increasing the magnification on my computer screen. </div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">I joke that while I’m sitting at my computer in Massachusetts you can read my screen in New Jersey. </div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start"></div> <div style="text-align:start">My doctor diagnosed me with cataracts in both eyes. </div> <div style="text-align:start">Great /sarcasm. </div> <div style="text-align:start">Wonderful /double sarcasm. </div> <div style="text-align:start"></div> <div style="text-align:start">.</div> <div></div> <div>One of my greatest fears is now reaching me, needles in my eye.  It doesn’t matter that my husband and oldest son have had cataract surgery (oldest son for that paintball accident), or if my sister had Lasik back when laser surgery was really really new, or my brother in law has to have needles in his eyes every few months to treat his condition, and they have all told me it doesn’t hurt,</div> <div><strong>IT’S STILL NEEDLES . . . GOING INTO YOUR EYE!!!!</strong></div> <div></div> <div>.</div> <div style="text-align:start"></div> <div style="text-align:start">The cataracts are small so we were going to do 6 month check ups just to monitor them.  I asked my doctor since we will be in the neighborhood to remove the cataracts if we could do the cornea transplant for my right eye at the same time?  If insurance okays it, was the answer.</div> <div style="text-align:start"></div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">Six month check up was 2 weeks ago.  The cataracts really haven’t changed, but my left eye has.  It now has signs of <span style="text-align:start">keratoconus.</span></div> <div style="text-align:start"></div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">It didn’t register in my brain, I corrected her that it was my right eye with <span style="text-align:start">keratoconus.  Then she corrected me, the keratoconus had spread to my left eye.  </span></div> <div style="text-align:start"></div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start"><span style="text-align:start">To save my sight and to try and stabilize my left eye we are moving quickly.  There is now a procedure called corneal collagen cross-linking.</span></div> <blockquote> <div style="text-align:start"><span style="text-align:start">A procedure called corneal collagen cross-linking may help to slow or stop keratoconus from progressing, possibly preventing the need for a future cornea transplant.<span>  </span></span>- <strong><a href="https://www.mayoclinic.org/diseases-conditions/keratoconus/symptoms-causes/syc-20351352?utm_source=Google&utm_medium=abstract&utm_content=Keratoconus&utm_campaign=Knowledge-panel" target="_blank">Mayo Clinic</a></strong></div> </blockquote> <div style="text-align:start"> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=ZEAPKOaR3sE" data-frameborder="0" data-height="315" data-src="//www.youtube.com/embed/ZEAPKOaR3sE?si=4Adyu2F-eQsiDFjL" data-width="560">YouTube Video</a></div> <p class="is-empty-p"></p> <p>I will have <span style="text-align:start">Corneal Collagen Cross-Linking, Friday, October 19, 2024.  Here is what the procedure entails:</span></p> </div> <blockquote> <div style="text-align:start"> <ul> <li>While lying down, you will be given drops to numb your eyes.</li> <li>Your ophthalmologist first removes the thin, outer layer of the cornea (epithelium) . This allows the medication to reach deeper into the cornea. You should not feel any pain due to the numbing drops.</li> <li>Vitamin B (riboflavin) eye drop medicine is applied to the cornea for about 30 minutes.</li> <li>Next, a special device shines a focused beam of UV light rays at your cornea for close to 30 minutes. The light activates the riboflavin in the cornea. This helps form new bonds between the collagen fibers in your cornea.</li> <li>A bandage contact lens is placed over the eye. This helps the cornea heal. The bandage lens is left in place for about a week.</li> <li>Your ophthalmologist may give you antibiotic and steroid drops to help your eye heal.</li> </ul> <p>--<span><span> </span><strong><a href="https://www.aao.org/eye-health/treatments/corneal-cross-linking-2" target="_blank">American Academy of Ophthalmology</a></strong></span></p> </div> </blockquote> <div style="text-align:start"><span><span>“Riboflavin (vitamin B2) drops and ultraviolet light to stimulate the formation of new bonds between collagen fibers in the cornea.</span><span><span> </span></span></span><span><span>This process increases the cornea's rigidity and tensile strength.” — Google AI</span></span></div> <div style="text-align:start"><span><span>.</span></span></div> <div style="text-align:start"></div> <div style="text-align:start">I will basically be blind for 4 days while the bandages will be on my left eye and my right eye is still functionally blind. My right eye is not a candidate for this as it already changed long ago.  My first follow up appointment is that Monday and then one month and 3 months after that.</div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">My doctor told me that this will hurt like hell. Because any pain with me gets a Fibromyalgia assist.  So I am making sure I have a lot of cannabis gummies and Vicodin on hand.  I will also be chauffeured everywhere for a little over a week. </div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">It could fail and then it will be a cornea transplant for both eyes. Hopefully before I go blind for real.</div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">But I was told, not 4 days before, that my<strong> <a href="https://www.dailykos.com/stories/2024/8/27/2266012/-Yes-Trump-I-blame-you" target="_blank" title="">4 year long wound had finally healed</a>!</strong></div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start"><strong>Yay!  I think. . . </strong></div> <div style="text-align:start">.</div> <div style="text-align:start"></div> <div style="text-align:start">In the words of the immortal Roseanne Roseannadanna (Gilda Radner), and words which I agree;</div> <h2 class="AlignCenter">"It's ALWAYS something!"</h2> <div style="text-align:start"> <div> <div style="text-align:start"></div> </div> </div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=g_rB4v75jqU" data-frameborder="0" data-height="315" data-src="//www.youtube.com/embed/g_rB4v75jqU?si=OkC-Yb1EL71JFKSM" data-width="560">YouTube Video</a></div> <p class="is-empty-p"></p> <p><hr></p> <p>.</p> <p>My youngest son has now graduated from college with a degree in plastics engineering and an interest in prosthetics. (proud mom moment)</p> <p>.</p> <p>I asked google what causes Keratoconus. Here’s what Google AI said:</p> <div> <p class="is-empty-p"></p> <blockquote> <div id="8n_wZs3BDvPT5NoP2pGguQ8__31"> <div> <div> <div> <div><span><span>The exact cause of keratoconus is unknown, but some research suggests that a combination of factors may be involved, including:</span><span> </span></span> <div> <div> <div> <div></div> </div> </div> </div> <div> <div></div> </div> </div> </div> <div> <div id="8n_wZs3BDvPT5NoP2pGguQ8__31"> <ul> <li> <div> <div> <div> <div><span><span>Systemic conditions</span></span></div> <div><span><span>Certain conditions, such as Down syndrome, Ehlers-Danlos syndrome, osteogenesis imperfecta, Leber congenital amaurosis, and Noonan syndrome, may increase the risk of developing keratoconus.</span><span> </span></span> <div> <div> <div> <div></div> </div> </div> </div> </div> </div> </div> </div> </li> </ul> </div> <ul> <li> <div> <div> <div> <div><span><span>Genetics</span></span></div> <div><span><span>A predisposition to keratoconus may be present at birth, and people with a family history of the condition are at a higher risk of developing it.</span><span> </span></span> <div> <div> <div> <div></div> </div> </div> </div> </div> </div> </div> </div> </li> <li> <div> <div> <div> <div><span><span>Environmental factors</span></span></div> <div><span><span>Some environmental conditions, such as asthma, hay fever, and atopic disease, may be linked to keratoconus.</span><span> </span></span> <div> <div> <div> <div></div> </div> </div> </div> </div> </div> </div> </div> </li> <li> <div> <div> <div><span><span>Eye rubbing</span></span></div> <div><span><span>Persistent eye rubbing can cause or worsen keratoconus, especially in people with a genetic predisposition.</span><span> </span></span> <div> <div> <div> <div></div> </div> </div> </div> </div> </div> </div> </li> </ul> </div> </div> </div> </div> </blockquote> <div> <div id="T4vvZpTzOsqg5NoPyob1wQE__23"> <div>I do have asthma and hay fever, which eye rubbing is a part.  I have had Pataday eyedrops for a while to keep my eyes from itching, and me from rubbing.</div> <div>.</div> <div></div> </div> </div> </div> <p>I am more disposed to the idea that this is genetics, even though no one in my family has been diagnosed with keratoconus.  I was exposed to two <span>mutagenics</span> in utero: <strong><a href="https://www.dailykos.com/stories/2011/12/11/1044199/-" target="_blank">radiation through x-rays and Diethylstilbestrol(DES)</a></strong>. I think these exposures are a major factor.  Three of my four children, my daughter, oldest and middle sons, have been diagnosed with astigmatism as they have gotten older.  We are watching.  </p> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=7ZpYe-VTEes" data-frameborder="0" data-height="315" data-src="//www.youtube.com/embed/7ZpYe-VTEes?si=pY3sx4QSRgCj9zs-" data-width="560">YouTube Video</a></div> <div> <div> <p class="is-empty-p"></p> <p><hr></p> <p><hr></p> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> </div> <div> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">THIS STORY</a>.</p> <p class="is-empty-p"></p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> </div> </div> <p class="is-empty-p"></p> rss@dailykos.com (Clytemnestra) Eye GildaRadner Keratoconus KosAbility RoseanneRoseannadanna _2270583 Sun, 29 Sep 2024 23:00:06 +0000 Yes Trump, I blame you. https://www.dailykos.com/story/2024/8/27/2266012/-Yes-Trump-I-blame-you?pm_campaign=blog&pm_medium=rss&pm_source= <p class="is-empty-p"></p> <p>Way back in<strong><a href="https://www.dailykos.com/stories/2011/10/12/1024506/-" target="_blank"> 2011 I wrote a diary </a></strong>about suffering from<strong> <span>"</span><a href="http://en.wikipedia.org/wiki/Menorrhagia">menorrhagia</a></strong><span><strong>"</strong> (heavy menstrual bleeding). I detailed the ablation I had in 2007 to burn the endometrial<span> </span>lining from my uterus and there after not have a period, or that was the hope anyway.  </span></p> <p>Before the ablation to get a smooth surface, making the ablation more effective, I received a D&C to remove polylogs, etc.  (I wonder if women who need D&Cs for something other than abortion are getting them in Texas, etc.)</p> <p>After I wrote that diary in 2011 to now, I had to have two more D&Cs and two more ablations.</p> <p>I was told after the last ablation that it would fail again.  The reason is that the <span>endometrium had invaded the uterine muscle.  That’s why all ablation failed. An ablation was always going to fail.  The next time it failed it would mean having a hysterectomy.</span></p> <p><span>So I lived somewhat happily and finished my degree.</span></p> <p>The ablation failed in March of 2020.  I was visiting my parents and spelling my sister for a month of their care.  My parents finally got to see the hell of living with me as the night it started I left their bathroom looking like a murder had been committed in that house. </p> <p>I knew what it meant and I was on the phone with my gynecologist as soon as day broke. I was flying back Monday, March 9, 2020 and my appointment was Thursday, March 12, 2020.</p> <p>Covid and Governor Baker closed Massachusetts in a State of Emergency (due to Covid) Tuesday, March 10, 2020.</p> <p>Everything was cancelled.  No doctors appointments, nothing but emergency surgery, etc.  So there I was. bleeding with nothing I could do about it.  I was put on medication and bedrest <strong>UNTIL</strong> Gov. Baker relaxed the state of emergency (which I fully supported) and elective surgeries (as opposed to emergency surgeries) resumed. And the medication really didn’t stop the bleeding.</p> <p>Every time I saw people on the news refusing to mask up, making it last longer — I cursed them.</p> <p>Every time Trump failed to be a leader and effectively manage the pandemic  — I cursed him, </p> <p><strong>and I cursed him a lot and still</strong></p> <p>Trump refused to send us, a blue state, PPE so we would “die” — I cursed him (and his son in law)</p> <p>Finally July 2, 2020 my surgery was scheduled.  What was supposed to be a routine 2 hour hysterectomy, lasted 8 hours.  They had problems removing my uterus, it weighed 15 lbs (almost twice a big as my biggest child at birth) — that’s a story for another time, and it<strong> IS</strong> a story.</p> <p>While I was laying in bed for weeks, waiting for surgery, I developed a sore on my left leg.  It just came up and wouldn’t heal.  </p> <p>After surgery I started going to<em> Wound Care and Wound Healing</em> every week, and they began treating me.  Part of the treatment was scrapping me off the ceiling after scraping/cutting on the wound to remove fibrous tissue and other tissue that would keep the wound from healing properly. It was not and<strong> IS </strong>not easy. </p> <h2>IS</h2> <p>Is, because what started in 2020 is still with me in 2024.  Imagine having an <strong>OPEN</strong> wound for 4 years. Open as in<strong> NOT healing</strong>.  </p> <p>In fact it would be healing just fine and then all of a sudden the progress we saw would cease and it would reverse itself. </p> <p>No, I don’t have diabetes. </p> <p>What I do have is poor circulation in my lower legs.  The walking I WAS doing before being put on 24/7 bedrest waiting for the hysterectomy was just enough to keep me from having wounds that won’t heal.</p> <p>Now I’m in this self feeding loop . . . I’m on bedrest to keep my leg up, which means I can’t exercise it because <strong>I’M IN BED</strong>.  And not exercising keeps me having problems with my circulation which means more non healing wounds. </p> <p>4 years, in bed, except for the periods I’d have to go back to Denver to give my sister a break from taking care of our parents.  But my Dad died in 2021 and my Mom died 14 months later.  So I’ve been “bedridden” without a break. </p> <p>I have had a vein stripped from my left leg and grafts.</p> <figure class="image-captioned align-right"><img alt="OUCH2.jpg" src="https://cdn.prod.dailykos.com/images/1338944/large/OUCH2.jpg?1724765088" title="OUCH2.jpg"> <figcaption>My wound June 23, 2024</figcaption> </figure> <p>Having fibromyalgia also has to speak up with this wound and make it hurt all the worse.  Right now I can’t even handle any compression on it.  To deal with the pain I have either had to tap into my “break glass” vicodin and I take gummies . . . lots of cannabis gummies</p> <p>In fact I’ve said if I die right now instead of a funeral just have everyone gather around the crematorium and take a huge whiff.  I’ll make everybody happy.</p> <p>I never envisioned myself as being a pot head granny. . . but here I am</p> <figure class="image-captioned align-right"><img alt="OUCH.jpg" src="https://cdn.prod.dailykos.com/images/1338943/large/OUCH.jpg?1724765078" title="OUCH.jpg"> <figcaption>Hopefully this won’t gross you out.  This is my leg  July 15, 2024.  The yellow is the collagen dressing that goes on the wound.</figcaption> </figure> <p>and it sucks, because life has just passed me by for 4 years and I’ve been high for a third or half of it.</p> <p>and I remember what Trump did and didn’t do, and how he mismanaged the pandemic response. And how that has left me now 4 years on in bed and in pain — at least once a week screaming in pain waiting for some pain killer to work — to make me either so high I don’t care, or passed out.</p> <p>I go to wound care every week high as a kite to deal with the pain of scrapping/cutting.  Upside is they don’t have to scrape me off the ceiling any more.</p> <p>But I do remember. And right or wrong (and I’m right) I do blame Trump.</p> <p class="is-empty-p"></p> rss@dailykos.com (Clytemnestra) Cannabis DonaldTrump Fibromyalgia KosAbility menorrhagia woundcare _2266012 Tue, 27 Aug 2024 13:28:55 +0000 KosAbility: Lumbar facet joint update. Open thread. https://www.dailykos.com/story/2024/8/25/2265622/-KosAbility-Lumbar-facet-joint-update-Open-thread?pm_campaign=blog&pm_medium=rss&pm_source= <p>This is an update to the previous story written <a href="https://www.dailykos.com/stories/2022/9/25/2123680/-KosAbility-Reaching-for-lumbar-relief" target="_blank">here</a>. As shown in the image at top, the facet joints are located at the rear of the spine and link adjoining vertebrae together.</p> <p><a href="https://en.wikipedia.org/wiki/Facet_joint" title="">https://en.wikipedia.org/wiki/Facet_joint</a>:</p> <blockquote> <p>The biomechanical function of each pair of facet joints is to guide and limit movement of the spinal motion segment...The facet joints, both superior and inferior, are aligned in a way to allow flexion and extension, and to limit rotation. This is especially true in the lumbar spine.</p> </blockquote> <p>Old arthritic facet joints make the spine stiff and painful to flex. If this occurs at the lumbar spine, the primary symptom is pain and stiffness upon transitioning from sitting to standing. A complete list of facet joint symptoms can be found <a href="https://www.spine-health.com/conditions/arthritis/symptoms-and-diagnosis-facet-joint-disorders" target="_blank">here</a>. One medical treatment that offers a possibility of improvement is injection of platelet enriched plasma into these joints. A comprehensive review of platelet enriched plasma can be found <a href="https://link.springer.com/article/10.1007/s11916-019-0797-6" target="_blank">here</a> and a case study of platelet rich plasma injected into facet joints of 5 patients can be found <a href="https://www.houstonsportsdoctor.com/pdf/regenerative-injection-treatment-in-the-spine.pdf" target="_blank">here.</a> A comprehensive list of facet joint disorder treatments can be found <a href="https://www.spine-health.com/conditions/arthritis/treatment-options-facet-joint-disorders" target="_blank">here.</a></p> <p>I had two rounds of platelet enriched plasma injections done on the facet joints at L4 and L5. Unfortunately it did not make any difference for me.  The only other surgical treatments are for pain relief and that is not my primary concern - my concern is impairment.  Pain is merely a signal that something is not right. The situation reached a crisis stage when I aggravated the condition by trying to lift something while in an awkward position. The increased pain and impairment made it difficult to simply walk.</p> <p>So I got a lumbar support belt.  This is a wide belt that is stiff in back, with provisions to cinch it up tight. This got me walking again, and after wearing it religiously for some days, I noticed my back was much improved.  I'm now mostly walking without it and I treat my back more carefully - I am more gentle with my yoga stretches and very careful when I lift things.  An unexpected happy ending.</p> <p class="AlignCenter">Open thread- all health related discussion fair game.</p> <div> <p class="is-empty-p"></p> <figure class="image-captioned width-xl align-right"><img alt="rainbow2015ed1.jpg" class="width-xl" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> </div> <div> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">THIS STORY</a>.</p> <p class="is-empty-p"></p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> </div> rss@dailykos.com (wilderness voice) FacetJoint KosAbility lumbar _2265622 Sun, 25 Aug 2024 23:00:02 +0000 KosAbility: Advance Healthcare Planning. Open Thread. https://www.dailykos.com/story/2024/7/28/2258686/-KosAbility-Advance-Healthcare-Planning-Open-Thread?pm_campaign=blog&pm_medium=rss&pm_source= <p><span>Advance healthcare planning: There are three related documents to be aware of. A couple are overlapping — the <span><span>Living Will and </span></span>Physician Orders for Life-sustaining Treatment (POLST) — but serve different functions. The third is the power of attorney for healthcare. All of these fall into the category of advance directives for healthcare.</span></p> <p><span>From <a href="https://www.nia.nih.gov/health/advance-care-planning/advance-care-planning-advance-directives-health-care" target="_blank">this NIH page</a>: <strong>Advance Care Planning: Advance Directives for Health Care</strong></span></p> <p><span>"The two most common advance directives for health care are the living will and the durable power of attorney for health care.</span></p> <ul> <li><span><span>            <strong><span>Living will:</span></strong><span> A living will is a legal document that tells doctors how you want to be treated if you cannot make your own decisions about emergency treatment...</span></span></span></li> </ul> <ul> <li><span><span>            <strong><span>Durable power of attorney</span></strong><span> <strong>for health care:</strong> A durable power of attorney for health care is a legal document that names your health care proxy, a person who can make health care decisions for you if you are unable to communicate these yourself."</span></span></span></li> </ul> <p><span><span><span>Here's an official<a href="https://www.courts.ca.gov/documents/Advanced-HealthCare-Directive-Form_031620.pdf" target="_blank"> Advance Health Care Directive Form</a> provided by the State of </span></span></span><span><span><span>California</span></span></span><span><span><span>. It contains both a Living Will and Power Of Attorney For Health Care, plus advisory comments.</span></span></span></p> <p><span>There's another document known as Physician orders for life-sustaining treatment (POLST). Although a living will covers similar ground, the POLST constitutes <em>orders</em> to medical staff directing treatment. It must be signed by a physician. Again, from the NIH<strong>: </strong></span></p> <p><strong><span>"Physician orders for life-sustaining treatment (POLST) ... forms:</span></strong><em> </em><span>These forms provide guidance about your medical care ... They serve as a medical order... Typically, you create a POLST... when you are near the end of life or critically ill [Not necessarily - more on this below] and understand the specific decisions that might need to be made on your behalf. These forms may also be called portable medical orders or physician orders for scope of treatment (POST). Check with your state department of health to find out if these forms are available where you live."</span></p> <p><span>A<a href="https://capolst.org/wp-content/uploads/2020/10/POLST_2017_wCover.pdf" target="_blank"> California version is here</a>, and contains three medical sections as shown in the top image:</span></p> <ol> <li><span><span><span>Whether or not to resuscitate</span></span></span></li> <li><span><span><span>Medical treatment, options being full, selective, or comfort only</span></span></span></li> <li><span><span><span>Whether or not to provide artificially administered nutrition.</span></span></span></li> </ol> <p><span><a href="https://www.cedars-sinai.org/content/dam/cedars-sinai/programs-and-services/healthcare-ethics/documents/post-faq.pdf" target="_blank">Here's information from Cedars Sinai</a> that addresses important practical details about the POLST:</span></p> <p><span>"Ideally, a POLST form is completed when the prospect for a patient having significant health decline is more likely than not, but before the patient is acutely ill" — This seems much wiser than waiting until nearing the end of life!</span></p> <p><span>Making sure that the POLST is at hand when needed: “Where should a patient’s POLST form be kept? If a patient lives at home, the original pink POLST form should be kept where emergency responders can find it."</span></p> <p><span>This document also covers:</span></p> <ul> <li><span><span><span>What should be done when a patient arrives in the ED or is admitted into the hospital (Make sure the POLST is entered into the medical record)</span></span></span></li> <li><span><span><span>Can the directives contained on a POLST form be changed?</span></span></span></li> <li><span><span><span>Are there other circumstances in which a POLST can be disregarded? (Yes)</span></span></span></li> </ul> <p><span>Regarding that last item:</span></p> <p><span>"If fulfilling the instructions on a POLST form would entail providing medically ineffective healthcare or healthcare that is contrary to generally accepted healthcare standards, the POLST may be disregarded."</span></p> <p><span>Unfortunately that seems to provide plenty of wiggle room if the healthcare provider wants to ignore the POLST. Be that as it may, much better to have a POLST than not, especially if one just wants to be kept comfortable and avoid heroic life sustaining interventions.</span></p> <p class="AlignCenter"><span>All health related matters fair game in the comments</span></p> <div> <p class="is-empty-p"></p> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> </div> <div> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">THIS STORY</a>.</p> <p class="is-empty-p"></p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> </div> <p class="is-empty-p"></p> rss@dailykos.com (wilderness voice) AdvanceCarePlanning AdvanceDirectivesforHealthCare durablepowerofattorneyforhealthcare KosAbility LivingWill Physicianordersforlife-sustainingtreatment POLST _2258686 Sun, 28 Jul 2024 23:00:23 +0000 IAN: July 26, 2024 Disability Pride Month and Access to venues and life https://www.dailykos.com/story/2024/7/25/2257937/-IAN-July-26-2024-Disability-Pride-Month-and-Access-to-venues-and-life?pm_campaign=blog&pm_medium=rss&pm_source= <div> <div> <div> <p>Happy Friday! Bit is off on Saturday, so I’ll be home today! <br> Welcome to the last Friday of Disability Pride Month. Today we are mostly going to talk about places that have increased accessibility, unlike in the picture above. There HAVE been many positive changes for access for all kinds of disabilities. Of course that could all change if Trump is voted into office, there are a lot of concerns for the disabled community in Project 2025. <br>  </p> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> </div> </div> </div> <div id="ad_InLine_1"></div> <div> <div> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank">FloridaSNMOM</a></p> <p>Saturday FloridaSND<br> <br> People with all kinds of disabilities need to and deserve to access venues and things to let them enjoy life to the fullest, just like non-disabled people. There are a LOT of barriers in place, from non-accessible buildings to outright discrimination. People with disabilities have to do a lot more planning before going anywhere. For some of us, our families help with that. If we are going to go to a new to me venue, for example, and Bit gets a chance to scout it ahead of time, we’ll know of any barriers to entry that are easily visible. Sometimes you have to call and find out, but then you have to hope that the person on the other end of the phone actually knows what is accessible and what is not. <br> <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=Hg7ywpHaqQE" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/Hg7ywpHaqQE" data-width="500">YouTube Video</a></div> </div> <p> <br> Beaches are something that have long been inaccessible, or accessible with a lot of difficulty, for people with mobility challenges of all kinds. Some communities, however, are making great strides in beach accessibility. <br> <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=j9y0hiXwMTM" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/j9y0hiXwMTM" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=CuGWVCe2nWA" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/CuGWVCe2nWA" data-width="500">YouTube Video</a></div> </div> <p> Accessible theme parks and playgrounds are becoming more popular, access to more rides, or even entire accessible parks are becoming available.<br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=u9d-CXiKtRg" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/u9d-CXiKtRg" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <br> Getting around town, and going to restaurants are something that many people take for granted, but they can pose challenges for the disabled as well. A place crowded with too many tables means no where to put a wheelchair safely, high bar counters are inaccessible for people in wheelchairs, as is travel around town or being able to access public buildings. Some communities are working on these challenges. <br>   <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=PWf0jJjcgD8" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/PWf0jJjcgD8" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=I0YqdD7Z8Ko" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/I0YqdD7Z8Ko" data-width="500">YouTube Video</a></div> </div> <p> <br> Vacationing can be particularly difficult. Finding a disabled room, usually a limited commodity in a hotel, can be difficult. As can finding venues that you can actually get into, including tourist attractions. Then there are the sensory difficulties. Crowded places can be overwhelming, causing sensory melt downs, panic attacks, or difficulty finding a way to the ramp or restroom. Airlines can also put barriers on the way, making the aisles narrow, mishandling mobility devices, or just airports being overly loud and echoey. <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=vcz8HO1eZLY" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/vcz8HO1eZLY" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=y4kfsYGKZEk" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/y4kfsYGKZEk" data-width="500">YouTube Video</a></div> </div> <p> <br> Your Science of the day: <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=wHroK-ymfqM" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/wHroK-ymfqM" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p">  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=mP07Oyr7enQ" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/mP07Oyr7enQ" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> </div> </div> rss@dailykos.com (FloridaSNMOM) Accessibletravel DisabilityPrideMonth IAN ItzlAlertNetwork KosAbility Rescued _2257937 Fri, 26 Jul 2024 04:55:10 +0000 IAN: January 19, 2024 Disability Pride Month Service dogs and the ADA https://www.dailykos.com/story/2024/7/18/2255104/-IAN-January-19-2024-Disability-Pride-Month-Service-dogs-and-the-ADA?pm_campaign=blog&pm_medium=rss&pm_source= <div> <div> <div> <p>Happy Friday! Bit and I are supposed to go for groceries today, so I’ll probably be in and out.  So far, the prednisone is helping, though my sugar jumped up a bit. I’m hoping that settles down as my body readjusts again to being on it.  I go see the Pulmonologist next week, so we’ll see if he wants to keep me on the pred or try a new med, given we can find one that medicaid will pay for. Unfortunately, they don’t like paying for a lot of the newer treatments. <br> <br> Today we are going to talk about something very close to my heart: service dogs. Sophie is my service dog, Sunny is a prospect, but I’m not sure at this point how she’s going to work out. I’m hoping to get her socialized more when the weather cools, and then we’ll be able to tell. She barks at everyone that comes in the house, but so does Sophie, without being able to take her out for walks, in harness, with working cues, I can’t really tell how she’s going to be. Buddy is a lot calmer, but he’s also scared of everything, and while he doesn’t get aggressive, just hides, that’s going to make working in public extremely difficult and unfair for him. But if they both become house dogs, that’s fine. I can always get a pup later and try again. </p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"></figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> </div> </div> </div> <div id="ad_InLine_1"></div> <div> <div> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank" title="">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSND<br> <br> <a href="https://www.ada.gov/resources/service-animals-faqs/" target="_blank" title="">Service dog laws </a>in the ADA were created with a group that included service dog handlers at the time. Their input was vital, because people who do not have a service dog really don’t know what it’s like to have one, and what barriers were there or could be put in place to owning one. <br> Service dogs, for example, do not have to be trained by a ‘professional’ or organization, you can train your own dog. Many times the organizations have years longs waiting lists and can cost $30,000-$40,000. This means that people have to manage without that particular medical device; and yes, legally, they are a medical device, for years, IF they can afford or get one funded. It means that the poor, many Vets, etc. would be priced out of having a service dog, especially when you consider that the average working life for a dog is about 6-8 years (this can be extended for a smaller dog like Sophie sometimes).  And of course a service dog is often no the only medical device a person needs, but it is one that insurance never covers. <br> <br> So what is a service dog? According to the ADA:<br> <span>“A. Under the ADA, a service animal is defined as a dog that has been individually trained to do work or perform tasks for an individual with a disability.  The task(s) performed by the dog must be directly related to the person’s disability.” (<a href="https://www.ada.gov/resources/service-animals-faqs/" target="_blank" title="">ADA FAQ</a>)<br> <br> Service dogs don’t need a certification or registration because it does not exist under US law. Yes, there are places you can buy those things online but.. .</span><br> “<strong>There are individuals and organizations that sell service animal certification or registration documents online. These documents do not convey any rights under the ADA and the Department of Justice does not recognize them as proof that the dog is a service animal.” (<a href="https://www.ada.gov/resources/service-animals-faqs/" target="_blank" title="">ADA FAQ</a>) </strong><br> <br> Unfortunately, many people who have service dogs are denied access rights, because business and employees don’t understand and/or enforce the ADA. Many companies have their own policies, but those policies do not usurp Federal Law. <br> <br> So what rights do businesses have? <br> ”<span>A. In situations where it is not obvious that the dog is a service animal, staff may ask only two specific questions: (1) is the dog a service animal required because of a disability? and (2) what work or task has the dog been trained to perform? Staff are not allowed to request any documentation for the dog, require that the dog demonstrate its task, or inquire about the nature of the person’s disability.” </span><strong>(<a href="https://www.ada.gov/resources/service-animals-faqs/" target="_blank" title="">ADA FAQ</a>)</strong></p> <p> <span>Also if the dog is being a disturbance, and the owner doesn’t get their dog under control, they can be asked to leave. It doesn’t matter if it’s ‘legally’ a service dog, or someone passing a pet as a service dog, if the dog is a disturbance, it can, and should, be asked to leave if the owner doesn’t get it under control. If places of business actually did this, people passing off pets as service dogs wouldn’t be a problem. If the pet is behaving as well as a service dog would, it’s not really an issue anyway. <br> <br> And yet, service dog owners deal with situations like this: </span><br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=j9twO83nctQ" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/j9twO83nctQ" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>Yes, even guide dogs: </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=Yn3_CNF3Sgg" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/Yn3_CNF3Sgg?start=850" data-width="500">YouTube Video</a></div> </div> <p> She has a service dog for FND, her symptoms are a bit different than mine, but Sophie does some of the same tasks, like deep pressure. </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=ODvWtE-QSIg" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/ODvWtE-QSIg" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>But that’s just businesses, then there’s the general public. Some of them have some knowledge of the ADA but think that they get to be the service dog police, when they are just another customer. <br> <br> This dog’s crime? His butt was “a little too close” to the woman, probably because she backed up towards where the service dog was because she *didn’t realize it was there*. </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=tA93lLUHfFs" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/tA93lLUHfFs" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>This one makes me mad, and I hope her family files charges against the boy who literally jumped onto the dog’s tail. Abuse of a service dog is a *Federal* offence. </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=U2wnIAEyQuc" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/U2wnIAEyQuc" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>This is what it’s like when someone follows you and your service dog around the store, sometimes they’re yelling at you the whole time, sometimes they just follow. It’s creepy, and it’s scary, because you don’t know what they are going to do.  This has happened to us a few times, one lady was screaming the whole time that our service dog wasn’t allowed in the store, management removed her and had her trespassed. But we’ve had people follow us through Walmart and the Dollar General because they got mad they couldn’t pet Sophie. <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=DhA1jIcNnv8" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/DhA1jIcNnv8" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>It’s so common that there are *multiple compilations* of service dog harassment videos out there. <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=Z6HrILWFslo" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/Z6HrILWFslo" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>I repeat, STAFF can ask the questions about a service dog, if it isn’t apparent. Your average Joe, cannot. Usually we, as service dog handlers, try to educate when we can. Sometimes though, we just want to get done with our shopping and go home, because we’re in pain, or anxious, or we’ve already educated 20 other people that day, etc.  Sometimes when we try to explain or educate people, they just get more belligerent and start yelling, or ask for documents that don’t exist. <br> <br> Some people have tried to push for a national certification or registry. We, as handlers, mostly push back against that. We don’t have money for a ‘test’ for our dog, or a certification or registry document (and you know the government will want their money for that). Some tasks are also more difficult to test for, like an asthma or seizure alert dog. Sure, we could ‘fake it’, and most of our dogs would just give us the side eye and huff at us LOL. And it’s not ethical to force people into a medical crisis to test the dog. And every test would have to be different, there’s no standard commands to teach a service dog. Every medical condition and need is different, even within the same disability. <br> <br> Personally, I think the ADA should be taught in every high school, as part of health class at least. Disability is the only minority anyone can join at any time. It doesn’t matter if you’re rich, poor, or middle class, it doesn’t matter the color of your skin. All it takes is ONE moment in the wrong spot, or someone else drinking and driving, or some medical emergency, and anyone can become disabled. We use the term Temporarily Able Bodied when referring to people without a disability, especially when they’re being ableist. <br> <br> Here’s some science for you: </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=xgR4fvjAkBo" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/xgR4fvjAkBo" data-width="500">YouTube Video</a></div> </div> <p> And here’s some music posted on behalf of my other half and all the other Trekkies on DKOS (I admit their costuming isn’t the best): </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=097vxabqBIE" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/097vxabqBIE" data-width="500">YouTube Video</a></div> </div> <p> <br> That was a very long, but needed diary. Do you know anyone with a service dog or do you have a service dog? What has their or  your experience been like? If you have questions about service dogs, feel free to ask away and I’ll answer the best that I can. </p> </div> </div> rss@dailykos.com (FloridaSNMOM) DisabilityPrideMonth IAN ItzlAlertNetwork KosAbility ServiceDogs Woozles _2255104 Fri, 19 Jul 2024 04:55:14 +0000 IAN: July 12, 2024: Disability Pride month: Managing healthcare with a disability https://www.dailykos.com/story/2024/7/11/2253304/-IAN-July-12-2024-Disability-Pride-month-Managing-healthcare-with-a-disability?pm_campaign=blog&pm_medium=rss&pm_source= <div> <div> <p>Happy Friday! We might be going for groceries today when Bit gets off work, it depends what time she gets off work. She’s supposed to be off work by 11, but that hasn’t panned out yet. <br> I fired my primary doctor on Monday. I have an appointment with a new one next Tuesday, we’ll see how that goes. I hope well enough to at least get my regular prescriptions pushed through. <br> <br> Today we are going to talk about medical care and the disabled. Many of us end up getting gas lighted, or told we are ‘too complicated’ so they are refusing to see us, or just passed around with no real treatment at all, or expected to make multiple phone calls to get things arranged when we just aren’t capable of doing that. <br>  </p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"></figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> </div> </div> <div id="ad_InLine_1"></div> <div> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank" title="">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank">FloridaSNMOM</a></p> <p>Saturday FloridaSND<br> <br> First off, what is medical gaslighting? <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=z_NoIQ3qKI8" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/z_NoIQ3qKI8" data-width="500">YouTube Video</a></div> </div> <p> <br> Don’t assume you know what our life is like by how we appear. <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=fwhT1KFBDV4" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/fwhT1KFBDV4" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>Getting a foot in the door: <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=z9ir4M4Q3kA" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/z9ir4M4Q3kA" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>The importance of making exam and treatment rooms accessible: <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=bIKTcNv17RI" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/bIKTcNv17RI" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=7Lfxle9UwCI" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/7Lfxle9UwCI" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>Your weekly science: <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=2t0h1as1fnA" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/2t0h1as1fnA" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>Here’s some music by disabled artists: <br> Beethoven was completely deaf when he wrote this: <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=kbJcQYVtZMo" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/kbJcQYVtZMo" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>Rick Allen lost his arm when his seatbelt gave out during an accident, and he was flung through the moon roof of his car (leaving his arm tangled in the seatbelt).  His drum set was entirely remade with the help of his OT and PT, to allow him to remain Def Leppard’s drummer. <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=ySfXWYF7-O0" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/ySfXWYF7-O0" data-width="500">YouTube Video</a></div> </div> <p> Have you ever been medically gaslighted or denied healthcare because of a disability?</p> </div> rss@dailykos.com (FloridaSNMOM) Community DisabilityPride IAN ItzlAlertNetwork KosAbility MedicalGaslighting _2253304 Fri, 12 Jul 2024 04:55:11 +0000 July 5, 2024: Disability Pride Month https://www.dailykos.com/story/2024/7/4/2251428/-July-5-2024-Disability-Pride-Month?pm_campaign=blog&pm_medium=rss&pm_source= <div> <div> <p>Happy Friday! Bit is off today, so we’ll be going out for groceries at some point, but I will be around so feel free to mingle and comment.  I hope everyone had a safe and good July 4th. I know a lot of us were staying in with upset animals, so I hope they are all at home safe and recovering well. <br>  </p> <p>Everyone knows about June being Pride Month. Did you know July is as well? July is <a href="https://findyourownhope.com/2022/07/10/what-is-disability-pride-month/" target="_blank">Disability Pride month</a>. We don’t get parades, or clothes aimed just for us, we don’t get the controversy either. Mostly, it gets ignored because people don’t know about it. Even a lot of people in the disabled community don’t know about it. <br> But we, the disabled, are the minority anyone can join at any point in their life. Some people are born with it, some people acquire it later, most people will have some form of disability as they age, even if it’s “just” hearing or vision loss, or more limited mobility and energy. </p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"> <figcaption></figcaption> </figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> </div> </div> <div id="ad_InLine_1"></div> <div> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank" title="">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank" title="">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSND</p> <p>There are some mixed feelings about Disability Pride. </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=cA-ZrFDevww" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/cA-ZrFDevww" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=f89SaozuTkU" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/f89SaozuTkU" data-width="500">YouTube Video</a></div> </div> <p> Ableism is a HUGE problem for people with disabilities, both from other people, and internalized. </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=WHT80mfIpdE" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/WHT80mfIpdE" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=fyGeX8gqx58" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/fyGeX8gqx58" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=W6c6JLbczC8" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/W6c6JLbczC8" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=6m-azaM3UuU" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/6m-azaM3UuU" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>What not to do.. I don’t know how people thought this was funny in the show.</p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=cAR0yjHuczc" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/cAR0yjHuczc" data-width="500">YouTube Video</a></div> </div> <p> SciShow: What is the Autism Spectrum?<br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=gyuP7Q1fk9g" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/gyuP7Q1fk9g" data-width="500">YouTube Video</a></div> </div> <p>And here is some music! Relax and enjoy! </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=RxvbwvJrzQw" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/RxvbwvJrzQw" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> </div> rss@dailykos.com (FloridaSNMOM) Ableism Community DisabilityPrideMonth IAN ItzlAlertNetwork KosAbility _2251428 Fri, 05 Jul 2024 04:55:09 +0000 05.11.2024 IAN "And this is one of the reasons I -hate- going to Doctors" https://www.dailykos.com/story/2024/5/10/2238331/-05-11-2024-IAN-And-this-is-one-of-the-reasons-I-hate-going-to-Doctors?pm_campaign=blog&pm_medium=rss&pm_source= <div> <p>.</p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"> <figcaption></figcaption> </figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> </div> <div> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank" title="">loggersbrat</a></p> <p class="is-empty-p"></p> <p>Greetings friends, and welcome to another Saturday.  Congratulations on making it through another week.  If you have been reading my diaries over the last several weeks, you probably know that lately, I have about had it up to my eyebrows, with the way so called medical professionals treat me, and those like me.  I have been accused of not listening, when I told a doctor that his strategy of treatment seemed counter intuitive.   I have told after two days worth of prep that I could not have the procedure I was prepping for, because… the so called professionals were, “uncomfortable transferring me from my chair.  I, and more recently, Mom, have been treated as if we were drug seeking, simply because we were working to find the best ways to keep functioning.</p> <p>I often think that its just, isolated events… but I cannot think that any more, not after reading the article that I will link below.  The problem is.. that Doctors do not see us, people with disabilities, as people.  Most of them see us as problems to be solved.  They see our disabilities as flaws, and their training fosters a frame of mind that so often leaves them treating their disabled patients with what in any other arena would be seen as a level of disrespect that would be seen as criminal.  The problem is, that they are not trained to treat us, their disabled patents, as people. Instead, they see our disabilities not as a natural part of us, and of our lives, but as pathologies, just like the other diseases and conditions that they treat.  This leads to people like me, often avoiding medical care until it is too late.  A trend that will continue, until doctors are trained, and encouraged through whatever means available, to treat -all- of their patients with more respect.</p> <p class="is-empty-p"></p> <p><a href="https://newmobility.com/doctors-still-have-no-idea-how-to-treat-people-with-disabilities/" target="_blank">Original Article</a></p> </div> rss@dailykos.com (FloridaSNDad) IAN KosAbility medical-care _2238331 Sat, 11 May 2024 04:55:07 +0000 IAN: April 19, 2024 FND Awareness Month https://www.dailykos.com/story/2024/4/18/2235930/-IAN-April-19-2024-FND-Awareness-Month?pm_campaign=blog&pm_medium=rss&pm_source= <div> <p>Happy Friday! April is awareness month for a bunch of different medical disorders and illnesses. Today we’re going to talk about FND, or Functional Neurological Disorder. <br> <br> I have had FND for almost 14 years now, I was diagnosed about 8 years ago, but symptoms started WAY before that.  For me, they think mine began with damage from 4 episodes of Thyroid Storm before they irradiated my thyroid. Then, when my thyroid was completely dead and they put me on meds for hypothyroidism, my brain misinterpreted my thyroid levels rising from low to normal as going back into storm again, and gave me all of the symptoms… in hyperdrive. </p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"></figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> </div> <div> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank">FloridaSNMOM</a></p> <p>Saturday FloridaSND<br> <br> In the beginning, I was having 10-20 non-epileptic seizures a day. I had cognitive issues and heavy brain fog, problems with temperature regulation, tremors and myoclonic jerks almost constantly, pain and fatigue. They ran a whole bunch of tests, thinking at first that it was my thyroid, but they discovered there was no thyroid function at all at that point. Then they looked at my parathyroid, thinking maybe those had been damaged with my thyroid disease, but no, they were, miraculously, functioning fine. They looked for MS, Parkinson’s, tumors, etc. Everything came back normal. During that time I had several neurological appointments scheduled, but every time I was near the date of the appointment, they would stop taking my medicaid. I spent 4 years trying to get in to see a Neuro. <br> <br> Finally, after waiting for an appointment date 18 months away, while still dealing with all of the same symptoms including multiple seizures a day, I got in to see a neuro. They scheduled a video EEG, and after that, they diagnosed me with FND, told me it was “stress and anxiety” and “now that you know what it is, it will go away on its own in a few weeks”.  Yeah, that never happened. When I went back a year later, they apologized for saying that, because new studies had come out, proving that WASN’T what FND was.  But they still wanted me to go see a psych and they told me to find a PT who was knowledgeable about FND. They also said that the closest Mayo had a chronic pain clinic that was helpful for people with FND, but they didn’t take medicaid. If I had the (at the time) $10,000 to go there, they could refer me. I just laughed at that. Wasn’t happening. They also gave me a website link to F<a href="https://fndhope.org/" target="_blank" title="">NDHope </a>and the FNDhope FB page. That was the extent of my ‘treatment’ through the Neuro. They told me not to come back unless there were changes because there was ‘nothing they could do’. <br> <br> I called the local mental health clinic, they didn’t have any knowledge of what FND was or how to treat it. I called around to *all* the local PT places, even some that didn’t take my insurance. Some of them had heard of FND but just referred cases back to the Neurologist I’d just seen because they didn’t know how to treat it. Only one PT offered to try to learn about it and help, but she didn’t take my insurance, and I wasn’t even getting disability at that point, there was no way to pay out of pocket.  Being a Certified Occupational Therapy Assistant, I decided to try and fashion my own treatment as much as I can, and started doing research. <br> <br> The main thing I’ve found helpful has been identifying symptom triggers and reducing those. I kept a very detailed medical journal for several months, noting down everything around my seizures; what I ate and drank, how I slept, pain levels, weather, monthly cycle, mental and physical health, fatigue level, etc.  Then I went over it with highlighters and found the patterns. My triggers are: pain, fatigue, weather changes (barometric changes specifically), fibromyalgia flares, and, when I had one, my monthly. That latter would prove to be very common for women with FND, when I started comparing things and asking questions on the FNDHope FB support group. Hormonal changes seem to be a big trigger for many of us.  I’m now down to about 4-12 seizures a month, which is a great improvement.<br> <br> So what is FND? FND is commonly described as like having a software issue instead of a hardware issue in the computer. The components themselves are intact, but there’s a problem with how they communicate with each other, kind of like when a computer crashes.  <br> I’m not as fond of that one. I describe it as similar to Sensory Processing Disorder but on a grander scale. Our brains misinterpret signals from our bodies and our environment and send out faulty information based on those signals, in the process, sometimes, information gets lost. It can affect *every system the brain controls*, including autonomic functions. For example, if I have a seizure outside and it happens to be raining, the rain feels like I’m getting hit by hail; if I’m having a bad day, noises are louder, lights are brighter, and sometimes it’s associated with a migraine as well. There are a lot of crossovers with SPD. </p> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=OxGaxEPULCM" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/OxGaxEPULCM" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=HJF-hOJGktU" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/HJF-hOJGktU?start=204" data-width="500">YouTube Video</a></div> </div> <p><br> Unfortunately, doctors used to think FND was ‘hysteria’ or ‘conversion disorder’. I.E. not neurological but psychological. We’re often also accused of ‘faking’ our symptoms. I personally was told I had “women’s hysteria” and I should “go see a psychiatrist and stop pesting the Neurologists”.  I’ve had EMTs claim I was faking seizures, and nurses and doctors ignore me and leave me in unsafe situations due to not believe seizures were real. I now  only go to the ER if I’m injured during a seizure or if a new symptom could be FND or serious health issue like a heart issue. </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=KwCoRsTKmn0" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/KwCoRsTKmn0" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>Dr. Jon Stone is one of the top experts in the field. He’s in England, unfortunately for me. <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=lmMwF1R0Co8" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/lmMwF1R0Co8" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=obfovsv2l0Y" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/obfovsv2l0Y" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>England and Australia are way ahead of the US in FND research and treatment. They still have doctors who dismiss it, but they are doing a lot more with new studies and more advanced treatment centers. <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=65ZR3E4dqko" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/65ZR3E4dqko" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=rTtRYMuG4FQ" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/rTtRYMuG4FQ" data-width="500">YouTube Video</a></div> </div> <p><br> <br> This woman’s seizures are very similar to mine. The camera is moving around so much because her legs are twitching and kicking just like her arms are, actually her whole body is. It’s hard to watch so be warned. This is NOT me, this is someone with similar seizures to me. <br> My daughter says I don’t sound that slurred, though it feels to me I am, and I don’t usually do the leaning thing, though sometimes I do. But the way she’s trembling with that arm coming up and almost hitting her in the face, and the body shaking is the same. And I have had that same thought as the seizure is coming on ‘I don’t like this.’<br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=JPxmsUs-C5Y" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/JPxmsUs-C5Y" data-width="500">YouTube Video</a></div> </div> <p><br> <br> FND is a chronic condition. With early treatment you can go into remission, but there’s always a chance it will come back. Some people go into remission for a few weeks, a few months, or even years. And not everyone goes into remission. A lot of us don’t. Children tend to have a higher chance of remission because their brain is more ‘plastic’, it more easily makes new connections and can avoid the FND miscommunication pathways that way.  Those of us who have just been given a website and left to our own devices have a lower chance of remission. <br> I have never known of another disorder where a specialist can just give you a website on a piece of paper, and/or a support group and just tell the patient.. here, figure it out yourself. But it’s *common* for those of us with FND. We’ve also had people come into the support group and the neuro they saw told them “go to this support group and they will help you get treatment”, which is a large onus to place on us who are struggling with this disorder ourselves. And having to go to a new doctor is.. difficult. You’re always ready to have to argue and advocate for yourself. Usually the best you can hope for is the doctor has never heard of FND and are willing to be educated and/or listen to you or read up on it on pages like FNDHope. Once in a while you get a doctor who knows what it is, but that’s a pleasant surprise when it happens. More often you get a doctor who had it mentioned as a ‘psychological condition’ in med school 20-40 years ago, and just dismiss it as malingering or just tell you to talk to psych or ‘cut stress and be more positive’. <br> It’s often a case of “Please don’t try to dismiss my condition I’ve lived with for over a decade because you did a google search and found outdated information that it’s ‘all in our heads’.” The only way FND is ‘all in our heads’ is that our brain is located there. </p> <p><br> I live with FND every day. On my good days I can get some housework done, do some things I enjoy, maybe even cook or bake. On my bad days, sometimes I don’t get out of bed, or I get up into the wheelchair, or I’m so brain fogged and exhausted I am barely functioning. Today, Thursday, I woke up unable to move or speak. It took me an hour and a half to be able to move enough to get out of bed with my son’s help. I’m still having trouble with left sided weakness and tremors in the right side. My arms are having myoclonic jerks where they just fly out to the side, and anything in my hand is usually thrown at that point.  I can also start out with a good day and it can turn bad, or I can start out having seizures in my sleep and waking up really foggy and out of it, and can improve through the day. There’s no way to know, except that some things will always set off symptoms, like a big storm front moving through. Sometimes I get a warning that a seizure is coming, sometimes it just hits out of the blue. The unpredictability of this disorder is extremely frustrating. <br> In this video they call it ‘recovery’ but it’s more often referred to as remission, because it can, and does usually, come back. </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=MbsF1ltZVF0" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/MbsF1ltZVF0" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> rss@dailykos.com (FloridaSNMOM) Community FND FNDHOPE IAN ItzlAlertNetwork KosAbility Rescued _2235930 Fri, 19 Apr 2024 04:55:21 +0000 KosAbility. Large study: Optimal range of total cholesterol is 180-260 mg/dl https://www.dailykos.com/story/2024/3/31/2232292/-KosAbility-Large-study-Optimal-range-of-total-cholesterol-is-180-260-mg-dl?pm_campaign=blog&pm_medium=rss&pm_source= <p>Once upon a time, before the advent of statins, the dividing line between normal and high cholesterol <a href="https://www.sciencedirect.com/science/article/abs/pii/S0828282X18309954" target="_blank">was 280 mg/dl</a>. That limit is in accord with<span> this 2019 study, entitled </span><a href="https://pubmed.ncbi.nlm.nih.gov/30733566/" target="_blank"><em>Total cholesterol and all-cause mortality by sex and age: a prospective cohort study among<strong> 12.8 million </strong>adults</em></a>, f<span>rom which the above chart is taken. <a href="https://www.researchgate.net/publication/330933344_Total_cholesterol_and_all-cause_mortality_by_sex_and_age_a_prospective_cohort_study_among_128_million_adults" target="_blank">Full text is available here</a>.</span></p> <p><span>*What is a hazard ratio?</span></p> <blockquote> <p><span><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC478551/" target="_blank">The hazard ratio</a> is equivalent to the odds that an individual in the group with the higher hazard reaches the endpoint first</span></p> </blockquote> <p>The chart shown at top is an aggregate of all participants, but optimal levels vary a bit depending on age. When we look at the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6367420/figure/Fig4/" target="_blank">more detailed charts shown in figure 4,</a> we see that 190 mg per deciliter is around the optimum for men under age 35 and women under age 45, whereas 220 is optimum for those 45 and up:</p> <div class="align-center"> <figure class="image-captioned"><img alt="Total cholesterol and all-cause mortality by sex and age" src="https://images.dailykos.com/images/1286365/large/12millionstudy_Fig4.jpg?1711851959" title="Total cholesterol and all-cause mortality by sex and age"> <figcaption>Hazard ratio of all cause mortality versus total cholesterol, by sex and age</figcaption> </figure> </div> <p><span>What about all of the many studies to the contrary? Here is one — </span><a href="https://jamanetwork.com/journals/jama/article-abstract/2728487" target="_blank">another 2019 study, titled</a> Associations of Dietary Cholesterol or Egg Consumption With Incident Cardiovascular Disease and Mortality, that shows risk of cardiovascular disease and mortality increases with increasing cholesterol and egg consumption, <span><em>regardless of whether cholesterol was above or below 240 mg/dl </em>(see figure 5 in study)</span>. B<span>ecause of such studies, nowadays the high limit for “normal” cholesterol is</span><a href="https://my.clevelandclinic.org/health/articles/11920-cholesterol-numbers-what-do-they-mean" target="_blank"> set at 200 mg/dl</a>. <span>Why this apparent contradiction?</span></p> <p>To answer this question we must understand that these are observational studies, and <u>observational studies do not prove causation</u>. <span>There may be confounders associated with </span>cholesterol levels. In the egg study that is exactly what happened. In the US, bacon consumption is highly correlated with egg consumption. High temperature cooking, like frying of fatty meat, creates advanced glycation end products - AGEs - that cause vascular damage. The body patches damaged arteries with plaques that contain a high concentration of cholesterol, and so cholesterol gets the blame. A<a href="https://heart.bmj.com/content/104/21/1756?utm_source=marketing_email&utm_medium=email&utm_campaign=heart&utm_content=monthly&utm_term=november" target="_blank"> large study in China</a> found that egg consumption was associated with <em>improved</em> cardiovascular health.</p> <p>Why the difference? Bacon is a rarity in China. <a href="https://link.springer.com/article/10.1007/s10903-012-9669-4" target="_blank">Chinese in the US who have adopted American dietary habits</a> have worse cardiovascular health than the average American, so this difference was not due to genetics. It arose solely from diet. AGEs, not cholesterol or eggs in moderation, are the bad actors. This is discussed in detail, with references, in my prior work, <a href="https://www.dailykos.com/stories/2019/4/28/1846499/-KosAbility-A-Tale-Of-Two-Studies-Leads-To-A-Deeper-Understanding-Of-Cardiovascular-Disease" target="_blank">A Tale Of Two Studies Leads To A Deeper Understanding Of Cardiovascular Disease</a>. <a href="https://www.dailykos.com/stories/2019/7/28/1874104/-KosAbility-Sugar-Fat-And-Cardiovascular-Disease" target="_blank">High blood sugar is another bad actor</a> that is associated with increased cardiovascular disease risk.</p> <p><span>Because observational studies do not prove causality, we would not want to raise an otherwise healthy person's low cholesterol, based upon the large study presented above, without proof it would lower cardiovascular risk. The same consideration applies to lowering cholesterol...</span></p> <h3><a href="https://ebm.bmj.com/content/22/1/15" target="_blank">Cholesterol Paradox: A Correlate Does Not A Surrogate Make</a></h3> <blockquote> <p>The global campaign to lower cholesterol by diet and drugs has failed to thwart the developing pandemic of coronary heart disease around the world. Some experts believe this failure is due to the explosive rise in obesity and diabetes, but it is equally plausible that the cholesterol hypothesis, which posits that lowering cholesterol prevents cardiovascular disease, is incorrect. The recently presented<strong> ACCELERATE trial dumbfounded many experts by failing to demonstrate any cardiovascular benefit of </strong>[trial drug]<strong> evacetrapib despite dramatically lowering low-density lipoprotein cholesterol and raising high density lipoprotein cholesterol in high-risk patients with coronary disease</strong>. This clinical trial adds to a growing volume of knowledge that challenges the validity of the cholesterol hypothesis and the utility of cholesterol as a surrogate end point. Inadvertently, the cholesterol hypothesis may have even contributed to this pandemic.</p> </blockquote> <p><span>If statins were benign medications this would not be too big a deal, but that is not so. <a href="https://academic.oup.com/cardiovascres/article/118/17/3288/6541634" target="_blank">According to this 2022 review</a>:</span></p> <blockquote> <p>Although data based on observational studies and registries indicated an incidence of SAMS [statin-associated muscle symptoms] that can reach 30%, RCTs [<span>randomized controlled trials</span>] suggest a much lower rate (roughly 5%)</p> </blockquote> <p>Why the difference?  Randomized controlled trials of statins generally require a run-in period wherein those who are intolerant of the medication are removed from the study<em> without reporting them as having experienced adverse effects. </em><span>For more on this see Dr. Maryanne Demasi comments below.</span></p> <p><span>According to this review there is also a .5% - 1% chance of acquiring (type II) diabetes as result of statin usage over a period of 5 years.</span></p> <p><span>Are people with low cholesterol truly healthy?  Not according to this </span>PhD in Biochemistry,<span> specializing in cholesterol. He discusses the 12 million participant study:</span></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=eZ-x5PRkSxI" data-frameborder="0" data-height="281" data-src="//www.youtube.com/embed/eZ-x5PRkSxI" data-width="500">YouTube Video</a></div> </div> <p>Transcript Excerpts:</p> <blockquote> <p>All right let's talk about cholesterol, my favorite topic. This topic is so perverted in scientific circles especially medical circles it's really frustrating. By the way I did a five year PhD on the topic of cholesterol and sex hormones. ... Now earlier this week I had a client from the country of Greece. He's a vegan and he had some blood work he sent me his total cholesterol is 110. That's very common with vegans and vegetarians. Their total cholesterol is 110, 120. And the doctor will come into the office he'll give you a high five. And he'll say, "you are the model of good health I'm so proud of you"... And you'll say - “yeah but I have depression, I have brain fog, and I have low testosterone, and I have no sex drive”. And they'll say “yeah but at least your blood test looks really good”.</p> <p>That's what we're dealing with in our modern medical system - they think the lower the better in terms of cholesterol. There's plenty of people out there that will say that it's complete nonsense. First of all a big reason for that is a large portion of your brain is made of cholesterol. Secondly your sex hormones are made from cholesterol. Testosterone, estrogen, progesterone - they're made from cholesterol. If you want low testosterone give yourself low cholesterol. How do you do that? Eat super low fat you'll feel like garbage after a couple years...You've got a lot of cholesterol stored up in your brain and stored up in your cells. You have quite a good reserve of it but eventually you deplete that reserve...</p> <p>My total cholesterol is usually about 240 maybe even 260 sometimes.  And again I did my PhD on this topic that doesn't scare me the least. .. But what happens when I go to the doctors, the conventional doctors in America? Happens all the time ... they'll say “I'm sorry to inform you you're gonna die any minute of a heart attack unless we get you on some drugs, some statins”. Right? ... Your total cholesterol is 240 you're gonna die that's very scary for people especially if you've never studied this you just assume the doctor knows best. ... But they really haven't taken much more than like a week of classes on the topic of cholesterol. So the optimal range I mean look at the actual data the optimal range is between 180 and 280 and if you're in that range I'm as happy as could be ...</p> </blockquote> <div> <p>A scientist and investigative journalist:</p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=BzTjPuikhQE" data-frameborder="0" data-height="281" data-src="//www.youtube.com/embed/BzTjPuikhQE" data-width="500">YouTube Video</a></div> </div> <p>Transcript Excerpts:</p> <blockquote> <p><span>In the 1980s when former President Ronald Reagan was in power he significantly slashed public funding to the National Institutes of Health and this left a gaping hole for private industry to come in and start sponsoring their own clinical trials. And this is essentially what happened with the statin trials - the vast majority of statin trials are funded by manufacturers. So when you have drug companies sponsoring their own trials and publishing their own peer-reviewed results Cochrane has established well and truly that this favors the benefits of the drug and underestimates the risks…</span></p> <p>Another way that you can influence public opinion and doctors opinions about the efficacy of statin medications is to design a trial to minimize the harms. And this is essentially what happened in the heart protection study. <strong>They design a trial with what they call a run-in period. So they gather say thousands of participants and they put all the participants on the drug for a period of four to six weeks. Then at the end of this run-in period there's a high dropout rate. People stop taking the medication they don't tolerate it mostly due to side effects. In the heart protection study 36% of the participants dropped out in this first phase of the trial. So with this freshly culled population of participants that's when they begin the clinical trial and they separate them between placebo and statins. So at the end the side effect rates between the statin group and the placebo group are fairly similar. So we know that cutting out all of those people that had side effects from the medication before the trial began grossly underestimates the percentage of people that will experience side effects at the end of the trial.</strong> And this is probably why we see that the side effect rate in the statin trials is wildly different to the rates that we see in real world populations. So when you ask doctors what the complication and side-effect rates are as statins they usually say around 20 to 30 percent of their patients feel muscle pain and brain fog.</p> <p>Another way that a drug company can market the medication and exaggerate the benefits is to exaggerate the statistics. Now most of you have heard doctors and public health authorities say that statins reduce your risk of developing heart disease by over 30%. Now in Australia direct-to-consumer advertising is illegal but it's not illegal to advertise direct to doctors. And this is the kind of advertisement that you'll see in a doctor magazine this is an Australian doctor publication: it says lipitor reduces the risk of heart attack by 36 percent. And they have a picture of an imminent and trustworthy doctor and why wouldn't you relay that to your patients. I'd be impressed with a medication that would reduce my risk by 36 percent. But when you look closer at the study this is the study it came from statin wars exaggerating statistics from 2008 it was published in the European heart journal and again Rory Collins appears on this publication. And on table 4 it actually shows that if you take placebo your risk of having a heart attack is about 3.1% it so this is taking the sugar pill. However if you take the statin your risk drops to two percent so from 3.1% down to 2% is about a 36% reduction, but the absolute risk reduction was only 1.1%. And that sounds much less impressive especially to a patient when they're talking to their doctor about whether they want to take statins.</p> <p>Now the reason this is really important for patients is because they have the fear of god put in them that you're going to die if you stop taking your statins. But these kind of statistics will just help the patient make more informed choices. Informed choices about whether or not they want to take a medication. Because if they're suffering really badly from side effects they have severe muscle pain and they can't exercise, they have brain fog, they have memory lapses, they can't function properly at work, then maybe some of them are willing to take the risk of this absolute reduction of 1.1%. So it's important to give patients honest and transparent information.</p> </blockquote> <h4><span>The foregoing should not be taken as personal medical advice.  Please consult with your doctor before making any changes in your medication.</span></h4> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> </div> <div> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank" title="">THIS STORY</a>.</p> <p class="is-empty-p"></p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> <p class="AlignCenter"><span>*** All health related discussion is fair game ***</span></p> </div> <p class="is-empty-p"></p> <p class="is-empty-p"></p> rss@dailykos.com (wilderness voice) cardiovasculardisease Cholesterol KosAbility Mortality Recommended _2232292 Sun, 31 Mar 2024 23:00:19 +0000 IAN: March 1, 2024 ADHD https://www.dailykos.com/story/2024/2/29/2226382/-IAN-March-1-2024-ADHD?pm_campaign=blog&pm_medium=rss&pm_source= <div> <div> <div> <div> <div> <div> <div> <div> <div> <div> <div> <div> <div> <p>Happy Friday! Today is a rest day for me, and tomorrow is groceries. Hopefully I don’t sleep all day. I’ve been taking extra naps and resting more during the week, because this has been a busy one. Luckily next week is not so busy so I’ll be able to get a break. May and June are already getting appointments lined up though. <br> <br> Today I thought we’d learn about ADHD. Prevalence is going up, and the reasons why are up for debate. Some of it is changes to <a href="https://www.aafp.org/dam/AAFP/documents/patient_care/adhd_toolkit/adhd19-assessment-table1.pdf?ref=clarityxdna.com" target="_blank" title="">diagnostic criteria</a> and people being more aware of it. But many adults are just now getting diagnosed. Hopefully this diary helps you understand yourself and/or others better. </p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"></figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wildfires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> <div> <div></div> </div> <div> <div> <div></div> </div> <div> <div> <div> <div> <div> <div> <div> <div> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank" title="">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank" title="">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank" title="">loggersbrat</a></p> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 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href="//youtube.com/watch?v=tmbZLzd5vSg" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/tmbZLzd5vSg" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=Zvqx9DfG9lU" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/Zvqx9DfG9lU" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> </div> </div> </div> </div> </div> </div> </div> </div> </div> rss@dailykos.com (FloridaSNMOM) ADHD Community Disability Health IAN ItzlAlertNetwork KosAbility _2226382 Fri, 01 Mar 2024 05:55:04 +0000 03.16.2024: IAN "Yoga for Everyone!" https://www.dailykos.com/story/2024/3/15/2226198/-03-16-2024-IAN-Yoga-for-Everyone?pm_campaign=blog&pm_medium=rss&pm_source= <div> <p>.</p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"></figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> </div> <div> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank" title="">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank">loggersbrat</a></p> <p class="is-empty-p"></p> <p>Hello friends, and welcome.  We made it through another Saturday, and here we  are, together again.  One of the things that I have struggled with for the last several decades is staying fit, particulalry since I got home from the hospital this last time.  A close loved one decided I needed a little help with that, and introduced me to website and ap that I was actually able to use.  I had known since college that there were wheelchair forms for yoga, because I had signed up for a class in my Sophomore year, only to be told that though i was correct, and that there were yoga forms for wheelies like me, the professor in question didn’t know them, and had no interest in learning.  After that, I must have swept the idea out of my mind, because until I was introduced to <a href="https://www.downdogapp.com/" target="_blank" title="">Down Dog</a>.</p> <p>The people behind Down Dog are dedicated to bringing yoga to -everyone.-. That doesn’t mean just the able bodied, or TABs, as we called them in school, and it doesn’t mean just the sighted.  With Down Dog, you can customize your yoga practice to suit -your- needs.  For instance, when I log into Down Dog, I select not only Chair yoga, but I further customize my practice by asking for a session with no leg movement.  When the session begins, not only is there a model on screen, demonstrating each pose as we go, but for those, like me, who have trouble seeing, or cannot see at all, there are vocal prompts, to guide you through each pose.</p> <p>I started Down Dog at the end of September, with a free 3 month trial that was gifted to me.  coincidently, just as my trial was ending, Down Dog’s holiday sale was ramping up.  Thus for the low, low price of $20 I was able to procure a year’s long membership.    At this point, Down Dog is part of my morning routine.  I start each day with a 20 minute yoga session.    Is yoga not your thing?  No problem.  Down Dog also offers Meditation, High Intensity Interval Training, Barre, which seems to be a ballet inspired workout program.  They even offer prenatal yoga.</p> <p>Want to give it a try?  Link Below, as always.</p> <p class="is-empty-p"></p> <p><a href="https://www.downdogapp.com/" target="_blank">Down Dog</a></p> </div> rss@dailykos.com (FloridaSNDad) DownDog IAN KosAbility Yoga _2226198 Sat, 16 Mar 2024 04:55:13 +0000 KosAbility: Microplastics in protein - Degree of processing most important variable. Open thread. https://www.dailykos.com/story/2024/2/25/2225392/-KosAbility-Microplastics-in-protein-Degree-of-processing-most-important-variable-Open-thread?pm_campaign=blog&pm_medium=rss&pm_source= <p><a href="https://www.sciencedirect.com/science/article/pii/S0269749123022352" target="_blank" title="">According to this study </a>the degree of processing is the most important variable affecting the amount of microplastics in protein. In most cases this outweighs whether the source is terrestrial or oceanic. <a href="https://ars.els-cdn.com/content/image/1-s2.0-S0269749123022352-gr2.jpg" target="_blank" title="">Click here</a> for original image of the chart. Study:<em> <a href="https://www.sciencedirect.com/science/article/pii/S0269749123022352" target="_blank" title="">Exposure Of </a></em><a href="https://www.sciencedirect.com/science/article/pii/S0269749123022352" target="_blank" title=""><em>U.S.</em><em> Adults To Microplastics From Commonly-Consumed Proteins</em></a><em>:</em></p> <blockquote> <p>We investigated microplastic (MP) contamination in 16 commonly-consumed protein products (seafoods, terrestrial meats, and plant-based proteins) purchased in the United States (U.S.) with different levels of processing (unprocessed, minimally-processed, and highly-processed), brands (1 – 4 per product type, depending on availability) and store types (conventional supermarket and grocer featuring mostly natural/organic products)... Concentrations (MPs/g tissue) differed between processing levels, with highly-processed products containing significantly more MPs than minimally-processed products (p = 0.0049)</p> </blockquote> <p>Among the minimally processed foods tested, shrimp did have a relatively high amount of microplastics, but lower than most processed foods. The other seafood tested, pollock, was low. <span>So although microplastics in the ocean get a lot of headlines, and rightly so, based upon this sample the degree of processing is the most important variable when it comes to microplastics in protein.</span></p> <p><span><a href="https://www.ncl.ac.uk/webtemplate/ask-assets/external/maths-resources/statistics/data-presentation/box-and-whisker-plots.html" target="_blank">How to read the box chart at top</a> - the upper and lower whiskers represent the upper and lower quartiles, respectively. The main body represents the middle two quartiles. The black line is the median, the dividing line between the middle two quartiles. It is not necessarily in the center of the main body because the data is not evenly distributed. Note that the upper whisker on the tallest bar has been truncated.</span></p> <p><span>Additional detail:</span></p> <blockquote> <p>Microplastics were present in all 16 protein products and in 88% of all samples tested (98/111 samples). Six different morphologies of MPs were observed: fibers, fiber bundles, fragments, rubber, foams, and films...<span>The significance of processing level as a driver of MP contamination in the proteins studied may be because more processed foods are subjected to greater amounts of time in the presence of or in contact with plastic <a href="https://www.sciencedirect.com/topics/earth-and-planetary-sciences/food-production">food production</a> equipment ...</span></p> <p>Previous studies have shown variable results with respect to packaging contamination of foods and beverages. For example, <a href="https://www.sciencedirect.com/science/article/pii/S0269749123022352#bib51" name="bbib51"><span>Kedzierski et al. (2020)</span></a><span> identified <a href="https://www.sciencedirect.com/topics/earth-and-planetary-sciences/polystyrene">polystyrene</a> tray packaging-derived MPs averaging 300–450 μm in size onto packaged poultry products (i.e., chicken breast, turkey escalope) (</span><a href="https://www.sciencedirect.com/science/article/pii/S0269749123022352#bib51" name="bbib51" title=""><span>Kedzierski et al., 2020</span></a>). <a href="https://www.sciencedirect.com/science/article/pii/S0269749123022352#bib87" name="bbib87"><span>Sobhani et al. (2020)</span></a> reported plastic particles in the size range of 5–20 μm were released from cutting and tearing plastic food packaging.<strong> Plastic food containers have also been shown to release millions to billions of sub-micron nanoplastic (NP) particles into the food or liquid it is holding when exposed to high heat in a microwave or similar setting</strong> (<a href="https://www.sciencedirect.com/science/article/pii/S0269749123022352#bib25" name="bbib25" title=""><span>Deng et al., 2022</span></a>; K. A. <a href="https://www.sciencedirect.com/science/article/pii/S0269749123022352#bib46" name="bbib46"><span>Hussain et al., 2023</span></a><span>) [emphasis added]</span></p> </blockquote> <p>So, never heat anything in a plastic container! <span>Easy enough to transfer it to a glass or ceramic vessel.</span></p> <p><a href="https://www.pnas.org/doi/10.1073/pnas.2300582121" target="_blank">Bottled water is also a highly significant source of microplastics</a>:</p> <blockquote> <p>micro-nano plastics in bottled water are analyzed with multidimensional profiling of individual plastic particles. Quantification suggests more than 105 [100,000] particles in each liter of bottled water, the majority of which are nanoplastics</p> </blockquote> <p>I replaced my plastic water bottle with a very nice stainless steel model long ago and I'm quite happy with it. I also store my food in glass containers. Easy changes to implement.</p> <p>Other articles on DailyKos regarding plastics in food and water:</p> <p><span><a href="https://www.dailykos.com/stories/2024/1/16/2216987/-Diet-for-a-sick-planet-Studies-find-more-plastic-in-our-food-and-bottled-water">Studies find more plastic in our food and bottled water</a></span></p> <p><span><a href="https://www.dailykos.com/stories/2024/1/29/2220124/-Obesity-amp-other-plastics-exposure-diseases-cost-US-economy-249billion-1-22-GDP">Obesity & other plastics exposure diseases cost US economy $249billion, 1.22% GDP</a></span></p> <div> <p class="is-empty-p"></p> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> </div> <div> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">THIS STORY</a>.</p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> <p class="AlignCenter"><span>All health related discussion fair game.</span></p> </div> <p class="is-empty-p"></p> rss@dailykos.com (wilderness voice) KosAbility microPlastics _2225392 Mon, 26 Feb 2024 00:00:13 +0000 KosAbility: I'm not ready for this.... https://www.dailykos.com/story/2024/1/28/2217549/-KosAbility-I-m-not-ready-for-this?pm_campaign=blog&pm_medium=rss&pm_source= <p><span>Charlie has been gone for one year this month; my love passed at 6:06am, January 21, 2023.</span></p> <p class="is-empty-p"></p> <p><span><span>This year was very emotional time, especially though the holidays, and I've come to the realization that I owe so much to everyone's effort to grant Charlie with her one wish if she had to die: a wish to die at home amongst family and friends. We needed everyone's helping to make this possible, for it would be unattainable for me to have granted this wish by myself.  </span></span></p> <figure class="image-captioned align-right"><img alt="CharliesPaintings10.jpg" src="https://images.dailykos.com/images/1157205/large/CharliesPaintings10.jpg?1675129978" title="CharliesPaintings10.jpg"> <figcaption>Charlie’s Art Studio</figcaption> </figure> <p class="is-empty-p"></p> <p><span><span>Letting go is so hard…</span></span></p> <p class="is-empty-p"></p> <p><span><span>I want to extend my gratitude to my daughters and spouses, Ashley & Jason and Lisa & Alex, who helped to comfort Charlie throughout her illness and last days. Ashley and Lisa worked hard through the last year of artsy stuff, like water color paintings and making shadow boxes of precious memories; to my sisters and their spouses, Vickie, Cindy & Max, Carol & Kurt, Allison & Russell and; to nephews Adam & Katy, who was the photographer at the wedding vows ceremony and to David and Courtney, who welcomed me to be a part of his close family after Charlie's death; Cindy came and stayed at our house about three weeks when Charlie needed her. And, of course, Granny who gave her support through it all.  The combined effort gave meaning to Charlie's life.</span></span></p> <p class="is-empty-p"></p> <p><span><span>I want to show my appreciation to my sister and her husband, Marybeth and Keith.  They have been making continuing trips from Corpus Christie to Garland, TX about every three to six weeks for the past 18 months or more to show their support. You are constantly surprising me, Marybeth, and I love you for it and proud to call you a close sister.       </span></span></p> <p><strong><span>I want to express my appreciation to those at KosAbility and Daily Kos for the ongoing support that I have received over all these years. KosAbility provided a true supporting and atmosphere that I shared about my and Charlie's disabilities. The discussion when the diary is published is where the magic happens, knowing that people cared.  </span></strong></p> <p><strong><span>In particular, I posted a short dairy the evening of Charlie's passing, all of four sentences long, "I Lost Charlie Today...". I was reaching out to the Daily Kos and KosAbility community just to update the small group of people that I thought would be interested. </span></strong><span><span><strong>What I didn't expect was the outpouring of support, concern and love from the entire community-- it was an uplifting and amazing experience! I truly needed the backing just then. </strong> </span></span><strong><span>  </span></strong></p> <p class="is-empty-p"></p> <p><span><span>The wedding vows ceremony was a precious, emotional event. I just wanted to express my appreciation to my family for all the work to make that possible, and for the family, friends and neighbors that attended.  It was THE highpoint in Charlie's and my life!</span></span></p> <p><span><span>Listening to Hanson "<a href="https://www.youtube.com/watch?v=Qy6RbUNS0tQ" target="_blank">Lay Me Down</a>" right now as I write this:</span></span></p> <p><span><span>https://www.youtube.com/watch?v=Qy6RbUNS0tQ</span></span></p> <blockquote> <p><span><span>It tears me into pieces watching you fight to fill your lungs with breath</span></span></p> <p><span><span>There's no need to struggle</span></span></p> <p><span><span>There's no need to struggle</span></span></p> <p class="is-empty-p"></p> <p><span><span>I lay you down</span></span></p> <p><span><span>Lay you down</span></span></p> <p><span><span>Don't you cry no more</span></span></p> <p><span><span>I'll lay me down</span></span></p> <p><span><span>Lay me down</span></span></p> <p><span><span>Mmm__Oh</span></span></p> <p class="is-empty-p"></p> <p><span><span>Well I'm not ready</span></span></p> <p><span><span>I'm not ready for this</span></span></p> </blockquote> <p class="is-empty-p"></p> <p><span><span>Journal Entry 1-11-2024</span></span></p> <blockquote> <p class="is-empty-p"></p> <p><span><span>I spent several days writing this memorial for Charlie, and I keep thinking about the morning of the vows ceremony, and how Charlie went in her wheelchair hid in the master bedroom closet when people started to arrived. Charlie seem to have wanted to be alone or with very few people. Somebody ventured that she was overwhelmed with all the commotion and activity that was going on before the ceremony, with the crowd inside the house and spilling out into the yard. That overwhelming  presents she must have been feeling seemed to fit, I thought at the time. We eventually coaxed her out of the closet to participate in the event. </span></span></p> <p class="is-empty-p"></p> <p><span><span>But I think back to that moment, and I come to the realization it was more than that. Charlie might have been thinking that we were holding the vows ceremony early because she could not make it to the 50th wedding anniversary. Charlie would die soon.  But not today, that was to be all blocked out for another time. I would not allow myself to dwell when Charlie would leave me....</span></span></p> <p class="is-empty-p"></p> <p><span><span>Shit.</span></span></p> <p class="is-empty-p"></p> <p><span><span>When I spoke to the gathering, I tried to convey a positive and emotional message, a celebration, thanking the family, friends and neighbors for attending this wedding vows ceremony.  I implored the group to look at that moment and live each day because each day was precious! But my voice cracked as my emotions overtook me and I thought of the unspoken reality that my love would die soon....and there was not a damn thing I could do to change the situation.  </span></span></p> <p class="is-empty-p"></p> <p><span><span>The feeling of intense happiness and despair at the same time is frightening. </span></span></p> <p class="is-empty-p"></p> <p><span><span>and everyone knew....  </span></span></p> <p class="is-empty-p"></p> <p><span><span>I'm not ready for this....</span></span></p> </blockquote> <p><span><span>But, back to what I was saying.</span></span></p> <p class="is-empty-p"></p> <p><span><span>To my friends and former partner, Tim & Margaret, and to my lifelong friends, Jesse & Susan and Tracey, who kept in touch by phone, texts and visitations over the last year. These folks have buoyed me by their constant companionship in the past year, keeping me grounded while I grieve.    </span></span></p> <p class="is-empty-p"></p> <p><span><span>To my good friends, who have helped me more than you will ever know, Gary, the best man at our wedding, Darrel, who took the time to visit Charlie regularly, Jeff, Tracy, Kathy, Lisa & Richard (Charlie showed Lisa how to pour paint with water colors at the end; I am forever grateful), Brent & Kimberly, Susan, Diego, Tony, Constanza, Vico, Johnny, Maryrose & Curtis,  Sidney, Clarissa, and Hope (who drove from Mississippi in order to visit Charlie one last time); to the professionals, including, Dr. Toledo, PT Vanita, RN Valery; and to the wonderful employees at our bank, including Ana, Sally, Susan and Linda, who made Charlie feel special with the acceptance of her artwork during one of her last trips outside the home.  Yes, we shut all banking business down for about 20 minutes that day! </span></span></p> <p class="is-empty-p"></p> <p><span><span>To my family, friends and neighbors who I haven't mentioned by name, thank you. </span></span></p> <p class="is-empty-p"></p> <p><span><span>In the end, Charlie's wish to die at home was achieved.  As Charlie texted me many times, "ALS Sucks." </span></span></p> <p class="is-empty-p"></p> <p><span><span>I, myself, am emotional wreck, but am slowly healing from these events, forever changed. I do miss Charlie, everyday. </span></span></p> <p class="is-empty-p"></p> <p><span><span>I am blessed to have the support and love of family and friends. And I wanted you to know. </span></span></p> <p class="is-empty-p"></p> <p><span><span>Love,  </span></span></p> <p><span><span>Steve</span></span></p> <div class="align-center"> <figure class="image-captioned"><img alt="122ECLP.jpg" src="https://images.dailykos.com/images/1264781/large/122ECLP.jpg?1705352829" title="122ECLP.jpg"> <figcaption>Elizabeth Charlene Latham Park</figcaption> </figure> </div> <div> <div> <p class="is-empty-p"></p> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> </div> <div> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">THIS STORY</a>.</p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> <p class="is-empty-p"></p> <p class="AlignCenter">*** <span>All health related comments welcome!</span><strong><span> ***</span></strong></p> </div> </div> <p class="is-empty-p"></p> <p class="is-empty-p"></p> rss@dailykos.com (Steven Park) ALS AmyotrophicLateralSclerosis Grief KosAbility Recommended Support Thanks _2217549 Mon, 29 Jan 2024 00:00:17 +0000 12.02.2023:IAN "A couple of things to make life easier" https://www.dailykos.com/story/2023/12/1/2206488/-12-02-2023-IAN-A-couple-of-things-to-make-life-easier?pm_campaign=blog&pm_medium=rss&pm_source= <div> <figure> <p class="is-empty-p"></p> </figure> </div> <div> <div> <p class="is-empty-p"></p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"> <figcaption></figcaption> </figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> </div> <div> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank" title="">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank" title="">loggersbrat</a></p> <p class="is-empty-p"></p> <p>Good morning my friends, and Happy Saturday!  Congratulations, we made it through another week.  If you are anything like me, then you spend quite a bit of time looking for things that will make your life a little easier.  I thought that I would take a moment to share a couple of the bits of software that make my life easier.</p> <p><u><strong>YRead3</strong></u>: This one, I have been using for years.  YRead is a text reading application designed and coded by Simon Haynes, under the label of <a href="http://www.spacejock.com/yRead3.html" target="_blank" title="">SpaceJock Software</a>.  YRead is simple, straight forward, and most importantly, Ad and Spyware free.  As long as you can use the ctrl + C and ctrl +V keyboard chords, then Yread will work fine for you.  Just highlight and copy the text that you need to read, and then paste it into Yread’s generous text field, then click the play arrow, and let Yread do the rest.</p> <p class="is-empty-p"></p> <p><strong>ElevenClock</strong>: If, like me, you find the window’s system clock difficult to use either because of its small size, or its poorly planned location, then give <a href="https://apps.microsoft.com/detail/elevenclock/XP89HZ8SVWTT0M?hl=en-US&gl=US" target="_blank" title="">ElevenClock</a> a try.  With a few clicks, you can make the clock bigger, change its color, or font, and even change its location, and move it somewhere that will make it easier for you to see.</p> </div> </div> rss@dailykos.com (FloridaSNDad) ElevenClock IAN KosAbility Windows-Software YRead _2206488 Sat, 02 Dec 2023 05:55:14 +0000 11.18.2023IAN "Ubisoft goes out of their way to make their new VR Experience enjoyable for Everyone" https://www.dailykos.com/story/2023/11/17/2205338/-11-18-2023IAN-Ubisoft-goes-out-of-their-way-to-make-their-new-VR-Experience-enjoyable-for-Everyone?pm_campaign=blog&pm_medium=rss&pm_source= <div> <div> <div> <div> <div> <p class="is-empty-p"></p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"></figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wildfires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> </div> </div> </div> <div> <div> <div id="htlad-3"> <div id="htlad-3-gpt"></div> </div> </div> </div> </div> <div> <div> <div id="htlad-3"> <div id="htlad-3-gpt"></div> </div> </div> </div> </div> <div> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank" title="">loggersbrat</a></p> <p>Good Morning folks, and welcome to another Saturday.  We made it through another week, and aren’t we all glad?</p> <p>Ubisoft, just as every other gaming company does, has its problems.  But this week, they have announced some of the measures they have taken to make their newest vr experience, Assassins Creed Nexus VR, playable and enjoyable for everyone, including gamers like me, who face a myriad of difficulties.  I can’t, and won’t go through the entire list, but I will give you the ones that most caught my eye, and then leave a link to the article as it appears on ubisoft’s website at the bottom.  </p> <p class="is-empty-p"></p> <p><strong><u>Continuous Parkour</u></strong> -Ever lose a life in a game, or have to start over, because you couldn’t hold on to the x-button, the b-button, the right trigger, and keep your character moving forward all at the same time?  If so, then this will no longer be a problem, if you are playing assassin’s creed in vr.  the Continuous Parkour mode is designed to eliminate that problem for players suffering from a lack of fine motor control.</p> <p><strong><u>The Virtual Nose, and the Animus Grid</u></strong> -Do you suffer from vertigo? Does a fear of heights keep you from enjoying certain games?  Fear not!  Ubisoft has you covered.  Apparently, one of the things that causes vertigo while playing VR games, is the inability to see your own nose in the bottom of your visual field because the VR headset blocks it out.  So, the engineers at Ubisoft decided to solve that problem by creating a virtual nose, there by restoring the balance of the universe, or at least giving you back your equilibrium.  Along the same vein, if a fear of heights is your problem, you need only activate the Animus grid, a simple 2D grid designed to remind you where the actual ground is, so that you don’t feel like you are about to fall off the spires of Notre Dame.</p> <p><strong><u>Mono Mode</u></strong> -Hearing loss is rather common.  Many of us hear better from one side than we do the other. Ubisoft has decided to capitalize here by allowing you to engage mono mode, which will make sure that all the "Game important” sounds come through either your left or right, which ever works better for you.</p> <p><strong><u>Seated Mode</u></strong> -Para/Quadriplegics are often left out of gaming in a lot of ways, and VR almost totally because of the ways that VR is most often employed, at least as far as I am aware.  Ubisoft has once again found a way to bridge that gap too.  With their seated mode, gamers with limited mobility, like me, to join the game.  With their seated mode, vr is at last a viable option for me, and others.</p> <p class="is-empty-p"></p> <p>The only real problem I see at this point is that they are only releasing their Nexus VR system for the MetaQuest line of VR Equipment, which will box disabled gamers into yet another corner.  Still, the option is there for those with the money to spend.</p> <p>As promised, the link to the full article, and list, will be left  below.  Enjoy, and… Happy Gaming!</p> <p class="is-empty-p"></p> <p><a href="https://news.ubisoft.com/en-us/article/631psH9E2m8W2jNvn9nROv/assassins-creed-nexus-vr-accessibility-spotlight" target="_blank">AC Nexus VR</a></p> </div> rss@dailykos.com (FloridaSNDad) Community Gaming IAN KosAbility Ubisoft _2205338 Sat, 18 Nov 2023 05:55:09 +0000 IAN: October 20, 2023 NCHPAD: free program for people with disabilities https://www.dailykos.com/story/2023/10/19/2200112/-IAN-October-20-2023-NCHPAD-free-program-for-people-with-disabilities?pm_campaign=blog&pm_medium=rss&pm_source= <div> <div> <div> <p>Happy Friday!  I started a new thing last week, and I wanted to give it a week before I brought it to you all, so I had some experience with the process. <a href="https://www.nchpadconnect.org/" target="_blank">NCHPAD</a> offers free classes for people with disabilities.  It’s an 8 week program and includes mindfulness, exercise, nutrition, and overall health classes. You can take all or any of them, there are also free one on one sessions with the mentors available, and they send you a box with everything you need, including exercise equipment like a yoga ball, wrist weights, a Pilates balancing circle thing, Exercise bands, etc. </p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"> <figcaption></figcaption> </figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wildfires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> </div> </div> </div> <div> <div> <div id="htlad-3"> <div id="htlad-3-gpt"> <div id="google_ads_iframe_/1095769/MOB_InLine_1_0__container__" style="text-align:center"> <div id="109a22af-606c-4cef-a3a2-f01294550e9c"> <div></div> </div> </div> </div> </div> </div> </div> <div> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank" title="">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank" title="">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank" title="">loggersbrat</a><br> <br> What is NCHPAD? </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=rSwKu_kuV8I" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/rSwKu_kuV8I" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>I have struggled for years to get treatment for several of my chronic illnesses. Medicaid has repeatedly denied coverage for Respiratory Therapy classes to improve my breathing stamina. I have never, in 23 years, been treated for my fibromyalgia. And I have had Functional Neurological Disorder for 13 years now, and never gotten treatment for that other than some meds to help with my non-epileptic seizures.  So I’ve been pretty much going it alone, figuring out how to help myself. <br> A few weeks ago I found the NCHPAD connects program, and, as much of what it includes is also included in the very expensive and not covered by medicaid FND treatment programs, I decided to give it a try. </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=1BkNCJ0wTeQ" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/1BkNCJ0wTeQ" data-width="500">YouTube Video</a></div> </div> <p>The 8 week program is called the Mentor Program. I have classes 4 days a week, by zoom meeting. Mindfulness on Mondays, Exercises on Tuesdays and Thursdays, Nutrition on Thursday evening, and Health on Friday. Each class takes about an hour.  And of course, you have tasks to do by yourself during the week. <br> <br> I am learning so much! Week 1 in exercise was posture and PNF exercises, which are recommended for people with FND and other neurological disorders. Week two we are focusing on improving balance to reduce falls. Exercises are taught both seated and standing, so you don’t have to try to adapt things yourself, and, as it’s a live zoom class, you can always ask questions and he will demonstrate adaptations that will work for you. <br> <br> They also give you lists of youtube resources to work with, to give you some variety, and provide more learning opportunities.  Below are some of the youtube resources, this is not the actual class, just things you can use to learn more or practice with. <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=n4CYxMr_D6s" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/n4CYxMr_D6s" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=NU23W-c4Ciw" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/NU23W-c4Ciw" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=4ZN-ko_ISio" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/4ZN-ko_ISio" data-width="500">YouTube Video</a></div> </div> <p><br> The first week in nutrition we learned how to make coconut curry. Bit and I got the ingredients when we went shopping, though we used green curry paste instead of red, because spicy foods don’t sit well with me.  It was really good! I had never had curry before.  I also learned some accessible cutting techniques and tools to let me actually do more cooking myself.<br> <br> And mindfulness, of course, is always recommended for chronic conditions. No one ever tells you how to go about it though. You’re kind of left on your own to figure it out. Youtube videos can help, but can be disjointed and confusing, or you can miss things that you need. Also, they’re not always accessible in what they teach. For example, I can’t use breath as an anchor, because thinking about my breath tends to give me MORE anxiety due to my COPD. My meditation mentor gave me suggestions for other anchors to use that may work for me, and I’m trying a few of them to figure out what works out best. And I just ignore breathing prompts that others use. And that’s ok.</p> <p><br> I’m hoping this will help me bring about some good changes in my life. Reducing symptoms and making me more functional in my day-to-day life, that’s my broad goal. I know I’m still going to have good and bad days, but if I can make the good days a little better and have a few less bad days I will be happy. <br> <br> Here is your frequently banned picture book of the week:<br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=axpsWq-RfTE" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/axpsWq-RfTE" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> </div> rss@dailykos.com (FloridaSNMOM) Disability IAN ItzlAlertNetwork KosAbility _2200112 Fri, 20 Oct 2023 04:55:06 +0000 KosAbility: Using Medicare Part D prescription insurance can cost more than retail! https://www.dailykos.com/story/2023/9/24/2194859/-KosAbility-Using-Medicare-Part-D-prescription-insurance-can-cost-more-than-retail?pm_campaign=blog&pm_medium=rss&pm_source= <p class="is-empty-p"></p> <p>I spot checked the published retail cost of four different medications versus what you would pay when using Medicare Part D Drug insurance policies. Where generics are available,<span> Mark Cuban's</span><strong><span> </span></strong> <a href="https://costplusdrugs.com/" target="_blank">Cost Plus Drugs</a> seems to have the cheapest published pricing, in this case for Gleevec and Invokana. For other retail pricing I used <a href="https://www.goodrx.com/" target="_blank">GoodRx.</a> For part D insurance medication costs I used <a href="https://www.medicare.gov/plan-compare/#/?year=2023&lang=en" target="_blank">the Medicare site</a>. <span>I included the monthly part D premium and the annual deductible, divided by 12, in the monthly Part D medication cost.</span> I chose mail order pharmacy for my Pharmacy.  I was eligible for a total of 26 mail order plans in my location. I chose the medications arbitrarily.</p> <div class="table-wrapper"> <table cellpadding="0" cellspacing="0" width="1132"> <tbody> <tr style="height:15.6pt"> <td colspan="3" style="height:15.6pt; width:281pt">Medicare Part D Monthly Medication Costs 2023</td> <td style="width:104pt"></td> <td style="width:53pt"></td> <td style="width:53pt"></td> <td style="width:53pt"></td> <td style="width:53pt"></td> <td style="width:53pt"></td> <td style="width:202pt"></td> </tr> <tr style="height:46.8pt"> <td style="height:46.8pt; width:53pt">Brand Name</td> <td style="width:130pt">Generic name</td> <td style="width:98pt">Indication</td> <td style="width:104pt">Dosage</td> <td style="width:53pt">Pills / month</td> <td style="width:53pt">Lowest Retail cost, $</td> <td style="width:53pt">Part D lowest cost, $</td> <td style="width:53pt">Part D 10th cheapest of 26, $</td> <td style="width:53pt">Part D<span>  </span>less than retail, % of plans</td> <td style="width:202pt">Part D lowest cost insurer</td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt">Gleevec</td> <td>Imanitib</td> <td>Cancer</td> <td>100 mg</td> <td align="right">30</td> <td align="right">13</td> <td align="right">194</td> <td align="right">795</td> <td align="right">0%</td> <td>AARP MedicareRx Preferred (PDP)</td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt">Rytary</td> <td>Carbidopa/Levodopa*</td> <td>Parkinson's</td> <td>23.75 mg / 95 mg</td> <td align="right">90</td> <td align="right">384</td> <td align="right">271</td> <td align="right">395</td> <td align="right">38%</td> <td>AARP MedicareRx Preferred (PDP)</td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt">Eliquis</td> <td>Apixaban</td> <td>Blood Thinner</td> <td>5 mg</td> <td align="right">60</td> <td align="right">553</td> <td align="right">110</td> <td align="right">267</td> <td align="right">100%</td> <td>Wellcare Medicare Rx Value Plus (PDP)</td> </tr> <tr style="height:15.6pt"> <td style="height:15.6pt">Invokana</td> <td>Canagliflozin</td> <td>Type 2 Diabetes</td> <td>100 mg</td> <td align="right">30</td> <td align="right">246</td> <td align="right">121</td> <td align="right">430</td> <td align="right">19%</td> <td>Cigna Extra Rx (PDP)</td> </tr> </tbody> </table> </div> <p>Note that the lowest cost insurer for different medications may differ from one medication to another, so if you're taking more than one medication, you my not find the lowest price on both from any particular insurer. You may be charged more than retail for one even though you may pay less for another. If you pay for more than one medication<span> the monthly premium and annual deductible are shared, which provides some savings. In any case, the moral of the story is check retail pricing before you buy.</span></p> <p><span>*Note on Rytary - carbidopa/ levodopa  can be had much cheaper. Rytary is a unique time release version.</span></p> <p><strong><span>Detail on charges using Gleevec example:</span></strong></p> <div class="align-center"> <figure class="image-captioned"><img alt="Gleevec charges detail" src="https://images.dailykos.com/images/1231148/large/gleevec1stentrydetail.png?1695560236" title="Gleevec charges detail"> <figcaption></figcaption> </figure> </div> <p><span>Click <a href="https://images.dailykos.com/images/1231148/original/gleevec1stentrydetail.png?1695560236" target="_blank">here</a> to embiggen. Note that the $213 figure at top of the image is the sum of the October through December monthly drug costs at the bottom. The estimated Total Drug Plus Premium cost includes the monthly premium of $122. If we add that monthly premium to the monthly drug cost of $71  we come up with $194 per month, 1/3 of $580, which is what is shown in the spreadsheet above.</span></p> <p>Part D prescription drug insurance also comes bundled with Medicare Advantage Part C if you choose to go that route.  I spot checked the same medications and got results very similar to what I found above for the part D plans.</p> <p><span>The donut hole still applies to Part D and can add an additional costs. What Medicare has to say about it:</span></p> <blockquote> <p><a href="https://www.medicare.gov/drug-coverage-part-d/costs-for-medicare-drug-coverage/costs-in-the-coverage-gap" target="_blank">Once you and your plan have spent $4,660</a> on covered drugs in 2023, you're in the coverage gap. This amount may change each year. Also, people with Medicare who get <a href="https://www.medicare.gov/basics/costs/help/drug-costs">Extra Help</a> paying Part D costs won’t enter the coverage gap.</p> </blockquote> <p>Also:</p> <blockquote> <p><a href="https://www.medicare.gov/drug-coverage-part-d/costs-for-medicare-drug-coverage/copaymentcoinsurance-in-drug-plans" target="_blank">Once you and your plan spend</a> $4,660 combined on drugs (including deductible) in 2023, you’ll pay no more than 25% of the cost* for prescription drugs until your out-of-pocket spending is $7,400 in 2023 under the standard drug benefit.</p> </blockquote> <p>*I could not find any definition of “cost” in this context. Presumably it is some amount considerably greater than what you would be charged under a Part D plan.</p> <p><span>For further discussion of the donut hole, <a href="https://www.verywellhealth.com/understanding-the-medicare-part-d-donut-hole-1738872" target="_blank">this site</a> seems to have a good explanation.</span></p> <p><em><span>Welcome to our regular end of the month meeting. All health related discussion is fair game.</span></em></p> rss@dailykos.com (wilderness voice) donuthole Insurance KosAbility Medicare Medication PartD _2194859 Sun, 24 Sep 2023 23:00:04 +0000 IAN: September 22, 2023 Medical update https://www.dailykos.com/story/2023/9/21/2194667/-IAN-September-22-2023-Medical-update?pm_campaign=blog&pm_medium=rss&pm_source= <div> <div> <p>The ducks, as you can see are getting bigger. They don’t have their Carnucles yet (the red stuff on the faces of Muscovy ducks, similar to a turkey), but they have their adult coloring and feathers, and they’re getting their wing feathers in.  This puts them around 8 weeks old. They are rapidly outgrowing the night time crate, so we are working on getting the run and then getting it put together. It looks like buying one is going to be a LOT cheaper than making one, and probably faster as well. </p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"> <figcaption></figcaption> </figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wildfires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> </div> <div> <div> <div> <div style="text-align:center"> <div> <div> <div></div> </div> </div> </div> </div> </div> </div> </div> <div> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank">loggersbrat</a></p> <p>As most of you know, I didn’t make it to the MRI on Tuesday because Medicaid transport insisted on using an Uber, and there just aren’t many ubers in this county, especially at 4 am when going an hour away.  My new MRI appointment is for November 15th, unless one of my doctors can get that moved up. <br> <br> I did go to the Rheumatologist on Wednesday. My blood work came back ‘inconclusive’. My ANA levels are sky high, as are my inflammatory markers and some of my immune blood cells. But no markers for lupus, RA or any other autoimmune issue. So it’s ‘autoimmune disorder not specified’, or, it could be my Fibromyalgia. Apparently, a small percentage of Fibro patients have a high ANA, though it’s rare. <br> In the doctor’s notes from the appointment that are available on the portal, she claims we discussed my fibro, but.. I don’t remember that being mentioned even once. And if it had been I would have asked about treatment because I have NEVER gotten any treatment for it other than OTC pain meds (which I now am not really supposed to take because of the kidney cancer). So when I go see her again in January, I guess I’ll have to bring it up. <br> She’s also pushing for me to come off prednisone. I agree, I’ve been on it a long time, but every time we try to wean me off it, my lungs go non-functional, I mean I can’t even walk to the bathroom without ending up on the neb. And I won’t live like that if I can help it. IF there’s something else that insurance will cover that I can use and it works, great, but last time we tried to get me on something, Medicaid wouldn’t cover it and even with the company discount plan it would have cost $300 a month, and that’s unsustainable. It also would have meant weekly trips to the pulmonologist in Gainesville for shots, in addition to all the other doctor’s appointments I have.  Each trip usually requires at least one day’s recovery before I’m functional to do much, so that’s 2 additional days out of my week (if I can’t schedule it the same day as another appointment).  Now that was 5 years ago, so maybe there’s something different out, or maybe something that Medicaid will pay for now that it didn’t then. <br> <br> And I’m telling you folks, I’m tired. I’m tired of all these appointments every week. I’m tired of losing days to recovery, and I’m tired of having more seizures every month. Even Nizz’s in home wound care and therapy take it out of me, because I have to get up earlier and get them up, and deal with other people in the house, and not be able to lie down and rest while they are here, etc. <br> Also found out that despite having gotten the vax for pneumonia, my titers for it are non-existent. So I have to make another appointment with my GP to get that vax, again. Without it I risk ending up with pneumonia if I catch a cold, or worse, this winter. <br> <br> On the bright side I’ve lost another pound, down to 258. 8 more pounds to go to hit my short-term goal. Maybe I’ll get there by New Year’s. </p> <p class="is-empty-p"></p> <p>Here is your weekly science video: <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=H42Fu7epz9Q" data-frameborder="0" data-height="281" data-src="//www.youtube.com/embed/H42Fu7epz9Q" data-width="500">YouTube Video</a></div> </div> <p><br> <br> And your weekly banned book read along: <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=uNKW8TiZHIU" data-frameborder="0" data-height="281" data-src="//www.youtube.com/embed/uNKW8TiZHIU" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> </div> <p class="is-empty-p"></p> rss@dailykos.com (FloridaSNMOM) Disability IAN ItzlAlertNetwork KosAbility _2194667 Fri, 22 Sep 2023 04:55:02 +0000 09.02.2023:IAN "Working toward independence" https://www.dailykos.com/story/2023/9/1/2190281/-09-02-2023-IAN-Working-toward-independence?pm_campaign=blog&pm_medium=rss&pm_source= <p>Greetings Friends.  Welcome to another Saturday.  We made it through another week, And I have made it through physical therapy.  This week I  was able to work on transferring from my bed to the wheel chair.  I still have a -lot- of strength work to do… but I am making progress, and I wanted you all to know.</p> rss@dailykos.com (FloridaSNDad) Healing IAN KosAbility Therapy _2190281 Sat, 02 Sep 2023 04:55:21 +0000 KosAbility open thread. Parkinson's: We should be studying those who do better, not ignoring them. https://www.dailykos.com/story/2023/8/27/2189977/-KosAbility-open-thread-Parkinson-s-We-should-be-studying-those-who-do-better-not-ignoring-them?pm_campaign=blog&pm_medium=rss&pm_source= <p><span>This is the regular monthly installment of the KosAbility group open thread. Those not interested in the details of this diary can feel free to skip to the comments.</span></p> <p>The Movement Disorder Society is the governing body that sets the criteria for diagnosing Parkinson's. The fulltext of these criteria are behind a paywall which strikes me as a travesty.  Be that as it may, here is the bit relevant to this discussion:</p> <blockquote> <p><a href="https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mds.26424" target="_blank">movementdisorders.onlinelibrary.wiley.com/...</a></p> <p>MDS clinical diagnostic criteria for Parkinson's disease</p> <p>Diagnosis of Clinically Established PD requires: ...</p> <p>3. No red flags...</p> <p>Red flags...</p> <p>2. A complete absence of progression of motor symptoms or signs over 5 or more y[ears] unless stability is related to treatment</p> </blockquote> <p>If red flags exist the diagnosis may be termed "clinically probable PD", but <em>not</em> <em>“established</em> PD”. What constitutes "treatment" as referred to in red flag #2 is not detailed, but presumably excludes interventions<span> that are not recognized medical treatments.</span> <span>So if a Parkinson's patient enjoys a lack of progression due to thiamine or <a href="https://healthunlocked.com/cure-parkinsons/posts/145447777/report-ceylon-cinnamon-relieves-parkinsons-motor-impairment.-evidence-suggests-remedy-of-underlying-disease" target="_blank">cinnamon</a> they will be regarded as not having clinically established Parkinson's, and the possibility that these treatments might actually have an effect may be safely ignored. In a real life example, a person who experienced improvement as a result of using<a href="https://healthunlocked.com/cure-parkinsons/posts/145447777/report-ceylon-cinnamon-relieves-parkinsons-motor-impairment.-evidence-suggests-remedy-of-underlying-disease" target="_blank"> cinnamon</a> privately communicated to me that his doctor then said he must not have Parkinson's.</span></p> <p><span>Meanwhile,  Parkinson's patients who learned to dance the Tango<a href="https://journals.sagepub.com/doi/full/10.1177/1545968311421614" target="_blank"> in this study </a>achieved results that would be worldwide headlines were they attributed to a drug (although there are other Tango dancing studies that did not achieve such outstanding results):</span></p> <blockquote> <p><span>For the MDS-UPDRS-3, there was no significant change in the Control group from baseline to 12 months, whereas the Tango group had a reduction of 28.7% [in Parkinson;s motor symptoms] (12.8 points). </span></p> </blockquote> <div> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> </div> <div> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">THIS STORY</a>.</p> <p class="is-empty-p"></p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> </div> <p><span><strong>Open Thread — All health related issues fair game</strong>. </span></p> <p class="is-empty-p"></p> rss@dailykos.com (wilderness voice) KosAbility Parkinsons _2189977 Sun, 27 Aug 2023 23:00:10 +0000 08.19.2023: IAN "More good news from the doctor!" https://www.dailykos.com/story/2023/8/18/2187888/-08-19-2023-IAN-More-good-news-from-the-doctor?pm_campaign=blog&pm_medium=rss&pm_source= <p class="is-empty-p"></p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"></figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank" title="">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank">loggersbrat</a></p> <p class="is-empty-p"></p> <p>So, I saw the doctor again yesterday, and he is very pleased.  my right leg is completely healed and my left is almost there!  On top of that I saw the physical therapist today and was able to stand on my walker for the first time since i went to the hospital!  Doctor Epseone  wants to see me in 2 weeks, and he says that if I am still healing at the same rate, it may very well be our last visit for a while!  I am really excited!</p> rss@dailykos.com (FloridaSNDad) Healing IAN KosAbility _2187888 Sat, 19 Aug 2023 04:55:19 +0000 08.26.2023 IAN "Mech Cadets. Inclusive Scifi, for a new Generation" https://www.dailykos.com/story/2023/8/25/2187015/-08-26-2023-IAN-Mech-Cadets-Inclusive-Scifi-for-a-new-Generation?pm_campaign=blog&pm_medium=rss&pm_source= <div> <p class="is-empty-p"></p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl%20%281%29.jpg" src="https://images.dailykos.com/images/631384/large/Concerned_Itzl%20%281%29.jpg?1547261301" title="Concerned_Itzl%20%281%29.jpg"> <figcaption>Hi! I’m Itzl!</figcaption> </figure> <p><span>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</span></p> <p><span>IA</span><span>N is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</span></p> </div> <div> <p><span>M</span><span>onday<span> </span><span><span>Youffraita</span></span></span></p> <div> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank">bigjacbigjacbigjac</a></span></p> <p><span>Wednesday Pam from Calif</span></p> <p><span>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></span></p> <p><span>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank">FloridaSNMOM</a></span></p> <p><span>Saturday FloridaSNDad</span></p> <p><span>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank">loggersbrat</a></span></p> <p class="is-empty-p"></p> <p><span>Greetings, Friends, and welcome to another Saturday..  All of my TV these days is taken in through various streaming services, and this week I found a new series on Netflix. Mech Cadets is very similar to Voltron, in that it centers around a group of teens, each chosen to Pilot a robo-mech, but Mech0Cadets crosses, and breaks boundaries that voltron wasnt brave enough to take on.  Lets start with the fact that The cadets in this show do not assume their robo’s gender.  instead, they use the neutral They/Them pronouns..  Beyond that, there is Frank, a cadet who is “limb different” an amputee whose prostetic does not give him special abilities.  it is just a prosthetic, and unlike most characters with disabilities in other shows, Frank isn’t the “outsider”  he was in the cadet program from the start of the series.  Not to say there isn’t an outsider of course, but you will have to watch the show to try and figure out which one, or ones, they are :)</span></p> <p class="is-empty-p"></p> <p><span><a href="https://www.netflix.com/browse?jbv=81004665" target="_blank">Mech Cadets</a></span></p> </div> </div> <p class="is-empty-p"></p> rss@dailykos.com (FloridaSNDad) IAN inclusivity KosAbility Mech-Cadets Netflix _2187015 Sat, 26 Aug 2023 04:55:05 +0000 KosAbility Open Thread https://www.dailykos.com/story/2023/7/30/2184048/-KosAbility-Open-Thread?pm_campaign=blog&pm_medium=rss&pm_source= <p><span>This evening we have open thread for our end-of-the-month meeting. </span>All health-related issues fair game.</p> rss@dailykos.com (wilderness voice) KosAbility OpenThread _2184048 Sun, 30 Jul 2023 23:00:06 +0000 IAN: July 15 2023 Home and improving https://www.dailykos.com/story/2023/7/14/2181227/-IAN-July-15-2023-Home-and-improving?pm_campaign=blog&pm_medium=rss&pm_source= <div> <div> <p>This is an open thread for FloridaSNDad aka Nizz. They are home, they have a hoyer lift so they can get up, but they still aren’t feeling their best and they asked me to post a diary for them again this week. We’re still working on getting PT and OT ordered. But progress is being made. </p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"> <figcaption></figcaption> </figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> </div> <div> <div> <div> <div style="text-align:center"> <div> <div> <div></div> </div> </div> </div> </div> </div> </div> </div> <div> <div> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank" title="">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank" title="">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank" title="">loggersbrat</a></p> <p class="is-empty-p"></p> <p>They go to their primary care doctor on Wednesday, so hopefully we can get all the referrals they need that day.  But with the hoyer lift I was able to get them out of bed, and back moving in the world again, so progress! <br> A wound care nurse is going to be coming to the house three days a week until they start in office wound care. So those days they will be getting out of bed later so that wound care can access their legs easier. But, they will still be getting up and things will get back to more normal. <br> <br> Here’s a bit of fun science for you all. </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=yc3PAfugI28" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/yc3PAfugI28" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> </div> </div> rss@dailykos.com (FloridaSNMOM) Community Disability IAN ItzlAlertNetwork KosAbility _2181227 Sat, 15 Jul 2023 04:55:10 +0000 IAN: July 14, 2023 Settling in https://www.dailykos.com/story/2023/7/13/2181007/-IAN-July-14-2023-Settling-in?pm_campaign=blog&pm_medium=rss&pm_source= <div> <div> <p>Happy Friday! Nizz is home, so hurrah for that! I talked to the social services worker at the hospital, they should be starting home health soon, PT is being worked on, for an at home thing, and now they are working on the hoyer lift. I tried their PC, but we’re stuck in a “well they need to come in to be seen to get that.” “Ok, but I can’t get them out of bed into the wheelchair without it.” “Well we can’t do it without seeing them first.” loop. If I could talk to the *doctor* I could get it sorted. But the nurse is standing in the way of that. </p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"> <figcaption></figcaption> </figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> </div> <div> <div> <div> <div style="text-align:center"> <div> <div> <div></div> </div> </div> </div> </div> </div> </div> </div> <div> <div> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday:<span> <a href="https://www.dailykos.com/users/bigjacbigjacbigjac" target="_blank" title="">bigjacbigjacbigjac</a></span></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank" title="">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank" title="">loggersbrat</a><br> <br> Other than that, things are slowly getting put away. Some things are still missing, but I know I’ve seen</p> <figure class="image-captioned width-xl align-right"><img alt="LytacattreeJuly2023.jpg" class="width-xl" src="https://images.dailykos.com/images/1208244/large/LytacattreeJuly2023.jpg?1689274077" title="LytacattreeJuly2023.jpg"> <figcaption>Lyta on new cat tree, which was a gift from Grandma</figcaption> </figure> <p>them here so I’ll find them eventually. We need to get a ladder to change the AC filter, because that is in the ceiling. My mom bought us a fire extinguisher, which was on our list to get, but she beat us to it. It will be here Sunday.  I found the kitty gas stove knob guards I want, I just need to order them. Things are slowly moving forward. I haven’t had time to try the new weeder yet, I spent most of my day on the phone about the hoyer lift on Thursday. </p> <p class="is-empty-p"></p> <p> This song has been stuck in my head, good thing we all like it: </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=mI8hPSSZSL4" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/mI8hPSSZSL4" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <div class="align-center"> <figure class="image-captioned width-xl"><img alt="IvanovacattreeJuly2023.jpg" class="width-xl" src="https://images.dailykos.com/images/1208246/large/IvanovacattreeJuly2023.jpg?1689274137" title="IvanovacattreeJuly2023.jpg"> <figcaption>Ivanova watching the birds intently from the new cat tree</figcaption> </figure> </div> <p class="is-empty-p"></p> </div> </div> rss@dailykos.com (FloridaSNMOM) Community Disability IAN ItzlAlertNetwork KosAbility _2181007 Fri, 14 Jul 2023 04:55:15 +0000 KosAbility. Studies: fracking neighborhoods unhealthy https://www.dailykos.com/story/2023/3/26/2159977/-KosAbility-Studies-fracking-neighborhoods-unhealthy?pm_campaign=blog&pm_medium=rss&pm_source= <p>Fracking is legal in Pennsylvania but not in New York.  That created a situation where researchers were able to compare nearby areas, one where fracking was abundant, and the other where fracking was absent, as shown in the title image. For the primary comparison they used the blue and yellow  regions. The orange region was considered to be potentially subject to air pollution from the fracking. They compared medical records of Medicare beneficiaries. <a href="https://www.thelancet.com/journals/lanplh/article/PIIS2542-5196(23)00009-8/fulltext" target="_blank">What they found:</a></p> <p class="is-empty-p"></p> <blockquote> <p>in 2015<em> alone,</em> there were an additional 11·8, 21·6, and 20·4 hospitalisations for AMI [heart attack], heart failure, and ischaemic heart disease, respectively, per 1000 Medicare beneficiaries, than would have been expected in the absence of UNGD. [emphasis added]</p> </blockquote> <p>In round numbers, that is excess hospitalizations for cardiovascular disease of 5% of Medicare recipients, <em>per year</em>. Air pollution with toxic compounds is a probable cause:</p> <blockquote> <p>Researchers have detected elevated levels of airborne hydrocarbons and other pollutants, including BTEX (benzene, toluene, ethylbenzene, and xylene) compounds, methylene chloride, and polycyclic aromatic hydrocarbons, near UNGD [fracking wells].</p> </blockquote> <p>Hospitalizations did not subside after peak development:</p> <blockquote> <p>AMI, heart failure, and ischaemic heart disease hospitalisation rates in Pennsylvania continued to diverge from those of the unexposed regions even in years past peak development. The initial construction, drilling, and fracturing phases of UNGD are thought to generate the most air pollution and generally occur well within 1 year of the spud date.<sup><a href="https://www.thelancet.com/journals/lanplh/article/PIIS2542-5196(23)00009-8/fulltext">5</a>,<a href="https://www.thelancet.com/journals/lanplh/article/PIIS2542-5196(23)00009-8/fulltext">69</a></sup>However, these findings would suggest pollutants from operational wells, which involve trucking for production and waste disposal, also play a significant role in poor health outcomes.</p> </blockquote> <p>Fracking impacts<a href="https://academic.oup.com/ije/article/49/6/1883/5900868?login=false" target="_blank"> not just the elderly and not just cardiovascular — here is a study of pediatric asthma:</a></p> <blockquote> <p><strong>Methods</strong></p> <p>We leveraged a database of Texas inpatient hospitalizations between 2000 and 2010 at the zip code level by quarter to examine associations between NGD  [natural gas drilling] and paediatric asthma hospitalizations, where our primary outcome is 0 vs ≥1 hospitalization. We used quarterly production reports to assess additional drilling-specific exposures at the zip code-level including drilling type, production and gas flaring. ..</p> <p><strong>Results</strong></p> <p>We observed increased odds of ≥1 paediatric asthma hospitalization in a zip code per quarter associated with increasing tertiles of NGD exposure and show that spatiotemporal variation impacts results. Conventional drilling, compared with no drilling, is associated with odds ratios up to 1.23..., whereas unconventional drilling [fracking] is associated with odds ratios up to 1.59 .. Increasing production volumes are associated with increased paediatric asthma hospitalizations in an exposure–response relationship.</p> </blockquote> <p><a href="https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2534153" target="_blank">Asthma exacerbations at all ages:</a></p> <blockquote> <p>we estimated activity metrics for 4 UNGD phases (pad preparation, drilling, stimulation [hydraulic fracturing, or “fracking”], and production) using distance from the patient’s home to the well, well characteristics, and the dates and durations of phases.</p> <p><strong>Main Outcomes and Measures</strong>  We identified and defined asthma exacerbations as mild (new oral corticosteroid medication order), moderate (emergency department encounter), or severe (hospitalization).</p> <p><strong>Results</strong>  We identified 20 749 mild, 1870 moderate, and 4782 severe asthma exacerbations, and frequency matched these to 18 693, 9350, and 14 104 control index dates, respectively. In 3-level adjusted models, there was an association between the highest group of the activity metric for each UNGD phase compared with the lowest group for 11 of 12 UNGD-outcome pairs: odds ratios (ORs) ranged from 1.5...for the association of the pad metric with severe exacerbations to 4.4 ... for the association of the production metric with mild exacerbations.</p> </blockquote> <p>Many studies found heightened risk of preterm birth or low birth weight associated with proximity to fracking wells. For example:</p> <p><a href="https://pubmed.ncbi.nlm.nih.gov/26426945/" target="_blank">Unconventional Natural Gas Development and Birth Outcomes in Pennsylvania, USA</a></p> <blockquote> <p>association between unconventional natural gas development activity and preterm birth that increased across quartiles, with a fourth quartile odds ratio of 1.4</p> </blockquote> <p>Yet another reason to replace fossil fuels with renewables.</p> <div class="table-wrapper"> <table> <tbody> <tr> <td> <p class="is-empty-p"></p> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">THIS STORY</a>.</p> <p class="is-empty-p"></p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> </td> <td> <p class="is-empty-p"></p> </td> </tr> </tbody> </table> </div> <p class="is-empty-p"></p> <p>All health related discussion fair game.</p> <p class="is-empty-p"></p> rss@dailykos.com (wilderness voice) Asthma cardiovasculardisease Fracking KosAbility Lowbirthweight PreTermBirth _2159977 Sun, 26 Mar 2023 23:00:12 +0000 03.25.2023: IAN "Draw What you Know!" https://www.dailykos.com/story/2023/3/24/2159372/-03-25-2023-IAN-Draw-What-you-Know?pm_campaign=blog&pm_medium=rss&pm_source= <p class="is-empty-p"></p> <p><strong>Element removed</strong></p> <p class="is-empty-p"></p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"></figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday<span> </span><a href="http://www.dailykos.com/user/ejoanna" target="_blank">ejoanna</a></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank">loggersbrat</a></p> <p class="is-empty-p"></p> <p>Good morning friends, and welcome to another Saturday.  We made it through another week, and here we are again!  I am glad you are all here with me.</p> <p>As I am sure most of you know of me by now, I spend a lot of time roaming around the net, and seeing what there is to see.  As Bilbo told us long ago, “It can be a dangerous business, stepping out your door.”  You never know what you might find.  Well, this time I am glad to have found what I did, and I am here to say we need more!  I am hoping to be able to support the project myself, before it ends, but in the mean time, I am doing what I can.  I am spreading the word, in hopes that one or two of you might be able to lend your support to this interesting bit of comic art!</p> <p>Sex on Wheels is going to be, when it is complete, a Graphic Novel, written and drawn by a disabled artist, about the disabled!  You can imagine the smile on my face when I found this little beauty, and I just had to share it with all of you!  And more so, if all goes well, there is planned to be, a television project, born from the Sex on Wheels comic!  </p> <p>So here is me, sharing this bit of treasure with all of you, in hopes that getting the word out will help to make sure that this project not only succeeds but grows still more.  Below, I will share the link to both the article I found, and also to Kickstarter, in case one or more of you have a few pennies to toss into the hat!</p> <p class="is-empty-p"></p> <p><a href="https://www.msn.com/en-us/tv/news/sex-on-wheels-comic-blends-sex-disability-to-tell-a-meaningful-story/ar-AA18OHaZ?cvid=fa2e463c68904fe8f32dd8f72af9a44a&ocid=winp2fptaskbarhover&ei=39" target="_blank">Sex On Wheels</a></p> <p class="is-empty-p"></p> <p><a href="https://www.kickstarter.com/projects/1644376829/sex-on-wheels-vol-one" target="_blank">KickStarter</a></p> rss@dailykos.com (FloridaSNDad) ArtThings IAN KosAbility Sex-on-Wheels _2159372 Sat, 25 Mar 2023 04:55:06 +0000 IAN: March 3, 2023 Kiosk Accessibility https://www.dailykos.com/story/2023/3/2/2155854/-IAN-March-3-2023-Kiosk-Accessibility?pm_campaign=blog&pm_medium=rss&pm_source= <p>Happy Friday! I’m having trouble with my right hand shift key, so if some things aren’t capitalized properly, I apologize. It’s annoying me lol. <br> thursday we went for groceries this week. we had lunch at Mcd’s, they just updated their interior, to include the new kiosks. Now usually I’m against the self-checkouts because they take jobs from people. but, these claimed to have some significant accessibility features and I wanted to check that out. </p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"></figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <div> <div> <div> <div> <div style="text-align:center"> <p class="is-empty-p"></p> </div> </div> </div> </div> </div> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday<span> </span><a href="http://www.dailykos.com/user/ejoanna" target="_blank">ejoanna</a></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank" title="">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank" title="">loggersbrat</a><br> <br> There are three significant accessibility features on the new kiosks: <br> Wheelchair user accessibility<br> Low vision accessibility<br> Accessibility for the blind. <br> They also have a “push for assistance” button if you need that at any point. <br> <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=d8SK35XYEVU" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/d8SK35XYEVU" data-width="500">YouTube Video</a></div> </div> <p> <br> I personally used the wheelchair user accessibility, which lowers the touch screen options, and gives you drag bars to access things. This means you can reach everything from a wheelchair without having to stand. I ordered for Bit and I without ever standing up from the wheelchair. I couldn’t find a video that showed this, but I did use it myself and it worked very well. <br> <br> The low vision accessibility gives you a movable magnifier (and you can use the wheelchair accessibility and the low vision at the same time) that you can use to see everything *really* large. the pictures and writing on the kiosk is generally pretty large in the first place. Bit could see everything fine without the magnification. With the magnifier it gets even larger. I did find a video on that.  The part with the kiosk starts at 2:52, if you want to fast forward. </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=SwtZdtgUj_E" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/SwtZdtgUj_E" data-width="500">YouTube Video</a></div> </div> <p> Then there’s the accessibility for the blind.  This starts with brail writing above the area where the headset plugs in and the special buttons for the blind are. I can’t speak to the accuracy of the brail, it’s not a language I am fluent in. I’ll let the video speak for itself though.</p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=plPB9YzR8lQ" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/plPB9YzR8lQ?start=8" data-width="500">YouTube Video</a></div> </div> <p> Generally, I avoid using kiosks so that I can make sure an employee gets paid to take the order. However, these accessibility options are really great, they give people much more independence in seeing their options, choosing their food, and ordering on their own.<br> <br> The kiosks only take cards, no cash, so that does limit them a bit. BUT, the card reader is down at the bottom, which means they are also MUCH more wheelchair accessible than the ones on the counters. I can’t read the screens on the counter models from my chair, but I can use the ones in the kiosks without assistance. the kiosks are fixed into the floor and ceiling, so they are actually really stable as well, I know you can’t see that well from the picture, but they aren’t just sitting on the floor ready to topple over.<br> <br> What do you think of these kiosks, from an accessibility standpoint?</p> rss@dailykos.com (FloridaSNMOM) accessibility Community Disability IAN ItzlAlertNetwork KosAbility _2155854 Fri, 03 Mar 2023 05:55:17 +0000 IAN: February 24, 2023 Sewing Bits https://www.dailykos.com/story/2023/2/23/2154595/-IAN-February-24-2023-Sewing-Bits?pm_campaign=blog&pm_medium=rss&pm_source= <p>Happy Friday! Bit is mostly off Saturday (she goes in to help with Maintenance, should be home by 10), and then we’re going for groceries. She will turn 20 on Sunday! But Sunday she works all day, so we’re going to give her her presents and such on Saturday. <br>  </p> <figure class="image-captioned width-sm align-right"><img alt="Concerned_Itzl.jpg" class="width-sm" src="https://images.dailykos.com/images/454869/large/Concerned_Itzl.jpg?1506689820" title="Concerned_Itzl.jpg"></figure> <p>As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!</p> <div> <div> <div> <div> <div style="text-align:center"> <p class="is-empty-p"></p> </div> </div> </div> </div> </div> <p>IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome<span> </span><em><span>everyone</span></em><span> </span>who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!</p> <p>Monday<span> </span><span><span>Youffraita</span></span></p> <p>Tuesday<span> </span><a href="http://www.dailykos.com/user/ejoanna" target="_blank">ejoanna</a></p> <p>Wednesday Pam from Calif</p> <p>Thursday<span> </span><a href="http://www.dailykos.com/user/art%20ah%20zen" target="_blank" title="">art ah zen</a></p> <p>Friday<span> </span><a href="http://www.dailykos.com/user/FloridaSNMOM" target="_blank" title="">FloridaSNMOM</a></p> <p>Saturday FloridaSNDad</p> <p>Sunday<span> </span><a href="http://www.dailykos.com/user/loggersbrat" target="_blank" title="">loggersbrat</a></p> <p class="is-empty-p"></p> <p>I found something neat online this week, the <a href="https://www.qualitysewing.com/ditto-pattern-projector.html?matchtype=e&keyword=ditto%20pattern%20projector&gclid=Cj0KCQiAi8KfBhCuARIsADp-A57kYGBybGDarU8XXF70Ujbg1fqdzwCtznnV07jOmfnQk68OBPrVDj0aAqYKEALw_wcB" target="_blank" title="">Ditto sewing projector</a>. It’s expensive, and probably out of most of our price ranges, but, I thought you would like to see it anyway. Personally, I am no good with using patterns, my dyscalculia gets in the way (lack of spatial reasoning). But I know many of you do. This could also be an accessibility device for people who can’t work with the thin paper patterns without tearing them (tremors, dexterity issues). <br> <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=qlp4E_PVDDA" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/qlp4E_PVDDA" data-width="500">YouTube Video</a></div> </div> <p class="is-empty-p"></p> <p>Representation is important! Adaptive clothing isn’t new, but disabled models still aren’t the norm, especially at fashion shows.<br> Here is an accessible fashion line at London Fashion Week, with disabled models on the runway: <br>  </p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content"><a class="new_iframe_placeholder" href="#">x</a></div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=eGvPhJCI4R8" title="" data-frameborder="0" data-height="281" data-src="https://www.youtube.com/embed/eGvPhJCI4R8" data-width="500">YouTube Video</a></div> </div> <p> Now if only the <a href="https://izadaptive.com/" target="_blank">prices for accessible clothes</a> would become more… accessible.</p> <p>Footless Jo on <a href="https://www.youtube.com/shorts/GSXMG18r72s" target="_blank" title="">adaptive pants.</a> It’s a short, so it won’t paste and play directly. <br> <br> Hope you enjoyed today’s sewing episode! </p> <p class="is-empty-p"></p> rss@dailykos.com (FloridaSNMOM) Disability Fashion IAN ItzlAlertNetwork KosAbility Sewing _2154595 Fri, 24 Feb 2023 05:55:05 +0000 KosAbility: ALS Sucks, Part 2 https://www.dailykos.com/story/2023/2/26/2150054/-KosAbility-ALS-Sucks-Part-2?pm_campaign=blog&pm_medium=rss&pm_source= <p>ALS is a devastating diagnosis. The trauma/drama/distress of daily coping makes it hard to write of my experience with being a caregiver. Where to begin? We know where it ends. Writing my experience with ALS is such an enormous thing. This diary is a continuation of the last, short diary I posted, "ALS Sucks."</p> <p>That diary was composed in July 2022, the night when Charlie decided to go on hospice care. Charlie had been diagnosed with ALS eight months earlier, on September 27, 2021. Yeah, the doctors initially thought that all Charlie's problems were from a stroke according to an MRI. Did a KosAbilty diary about that in 2020.</p> <p>The quick progression of the ALS is something I was not prepared for, but it stabilized for a time in fall 2022, or, so it seemed. Then it got worse. Charlie's diagnosis came with a dementia, which I had noticed for sometime. This is the reason that I started accompanying Charlie on all her doctor visits. She still shows resistance to the idea that she has dementia.  </p> <p>Where to start? I made a Facebook entry recently, taken directly from my sporadic journal entries:</p> <blockquote> <p><strong>Journal entry  11-19-2022</strong><br> Charlie had trouble getting up out of the recliner, where she sleeps because it's easier to breathe, plus she has a hard time maneuvering her body on a flat surface. Charlie has a lift chair, (I jokingly call it the dump chair), to assist her in standing upright position. Her last night in actual bed was in August. Charlie has to be sitting in a reclined position in order to breath.<br> But, this morning offered a new barrier. We got Charlie sanding up, but she was wobbly, even while I was holding her arm. She could not move her feet, especially, her left foot. She could not shift her weight onto the right leg and slide her left, even 3 inches. Normal transferring is to stand up, go two small steps over, turn 90 degrees, and sit into the wheelchair. After three attempts, I  began clearing out the chair and the small table in order to get the Hoyer lift set up to make the transfer. Charlie didn't want to use the lift, so we tried again, and this time she was able to shuffle her feet to make the transfer.</p> </blockquote> <p class="is-empty-p"></p> <blockquote> <p><strong><span>Journal entry 11-25-2022</span></strong></p> <p><span>We tried to get Charlie settled in for the night, into her recliner from the wheelchair. I helped her to stand, but she was having trouble moving her left foot. We decided to sit back down in the wheelchair and move the wheelchair just a little closer so all she would have to do is stand, then pivot then sit in the recliner. Seems simple enough, but Charlie has continuing, and worsening, transferring skills. Charlie stood up,while hanging onto my arm for support and balance, moved her left foot about 2 inches. That was progress, so she continued her transition by taking a step with her right foot and turned slightly. Now the wheelchair and the recliner were at 90 degrees from each other. Charlie turned 45 degrees; she could neither sit in the recliner nor go back to the wheelchair without turning her left foot either way. Charlie tried, oh how she tried! She put more weight on me, but I was at my limit. The only thing left was to ease Charlie down to the floor, back supported on the recliner base. As I moved furniture to allow the Hoyer lift, I spilled her tea. Shit.</span></p> <p><span>The recovery process took about 45 minutes: Get the Hoyer sling underneath her, the sling attached to the lift, Charlie lifted off the floor, the chair repositioned,  Charlie set down in the chair, the chair tilted back, remove the sling under her lower half, the chair tilted forward and removed the sling and removed the sling from the upper half. It's a lot of work for both me and Charlie. Thank goodness that we were able to sit Charlie down on the floor easily.</span></p> <p><span>Charlie is losing the ability to transfer.We are making plans with the help of the hospice agency, but there are somethings that don't get better. ALS sucks, as Charlie would often text me....</span></p> <p><span>We are enjoying this time we still have; Charlie continuing with her painting and me, just taking care of the mundane things of daily living.  </span></p> </blockquote> <p>That Facebook entry was a cry...…</p> <p><strong>After my Facebook posting, I came up with the idea of trying to describe just one day, a good day, in our existence of living with ALS</strong>. Then that day turned into many days...Ok, here we go.</p> <p class="is-empty-p"></p> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">THIS STORY</a>.</p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> rss@dailykos.com (Steven Park) ALS Art Caregiving Death Dementia Hospice KosAbility paintings stroke _2150054 Mon, 27 Feb 2023 00:00:13 +0000 KosAbility open thread: What are your silver linings (poll)? https://www.dailykos.com/story/2023/1/29/2149734/-KosAbility-open-thread-What-are-your-silver-linings-poll?pm_campaign=blog&pm_medium=rss&pm_source= <p><span>Given the choice, we would all surely pick freedom from our various afflictions. Unfortunately we do not have that choice. Have our difficulties brought us any gifts? In my case Parkinson's brought me to Qigong from which I have derived much benefit. I still am subject to my fair share of suffering. This is not about trying to pretend everything is okay when it's really not. Nor is this about some kind of romantic ennobling of our conditions. With that said,<a href="https://www.nature.com/articles/s41531-022-00283-1" target="_blank" title=""> a recent survey of Parkinson's patients</a> found the following:</span><br>  </p> <blockquote> <p><span>Most respondents identified one or more positive changes, mainly a new focus in life, better coping skills, new activities, healthier lifestyle, and improved relationships with relatives and friends. This ability to perceive a silver lining of disease is in line with the concept of adversarial growth in illness, and positive health, which underscores resilience, self-management, and the ability to adapt. Importantly, not every respondent identified an upside to living with PD, so this is very much an example of personalized medicine. This is a delicate, difficult issue, and discussing the presence of silver linings may feel counterintuitive. However, exploring this issue may help people with PD and caregivers to better deal with the disease, and allow medical professionals to provide better support, to learn about coping strategies, to understand the degree of disease acceptance, and to enhance a healthier lifestyle.</span></p> </blockquote> <p class="is-empty-p"></p> <figure class="image-captioned align-right"><img alt="rainbow2015ed1.jpg" src="https://images.dailykos.com/images/765068/large/rainbow2015ed1.jpg?1581287017" title="rainbow2015ed1.jpg"> <figcaption></figcaption> </figure> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">KOSABILITY IS BY AND FOR</span></p> <ul> <li><span style="text-align:left">PEOPLE LIVING WITH DISABILITIES;  </span></li> <li><span style="text-align:left">WHO LOVE SOMEONE WITH A DISABILITY;  OR</span></li> <li><span style="text-align:left">WHO WANT TO KNOW MORE ABOUT THE ISSUES.</span></li> </ul> <p><span style="text-align:left">OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF<span> </span></span><strong>THIS<span> </span></strong><span style="text-align:left">COMMUNITY.</span></p> <p class="AlignCenter" style="text-align:center"><span style="text-align:left">FEEL FREE TO</span></p> <ul> <li><span style="text-align:left">COMMENT ON THE DIARY TOPIC;</span></li> <li><span style="text-align:left">ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;</span></li> <li><span style="text-align:left">SHARE SOMETHING YOU'VE LEARNED; OR</span></li> <li><span style="text-align:left">GRIPE ABOUT YOUR SITUATION.</span></li> </ul> <p class="is-empty-p"></p> <h2 class="AlignCenter">OUR ONLY RULE IS TO BE KIND.</h2> <p>BULLIES WILL BE IGNORED AND/OR OBLITERATED.</p> <p>FOR MORE ELABORATION ON OUR GROUP RULE PLEASE READ<span> </span><a href="https://www.dailykos.com/stories/2018/10/21/1805508/-KosAbility-Apparently-We-Need-a-Kindness-Manifesto-and-Boundary-Delineation" target="_blank">THIS STORY</a>.</p> <p><span>AT KOSABILITY WE AMICABLY DISCUSS ANY AND ALL MATTERS PERTAINING TO HEALTH. OUR DISCUSSIONS ARE NOT MEDICAL ADVICE. MEDICAL ADVICE CAN ONLY BE PROVIDED BY A QUALIFIED PHYSICIAN WHO HAS EXAMINED THE PATIENT.  </span>IF YOU HAVE WORRISOME SYMPTOMS PLEASE SEE YOUR DOCTOR!</p> <p class="AlignCenter"><strong><a href="https://www.youtube.com/watch?v=0ZmR-T0jilA" target="_blank"><u>Grateful Dead - Touch Of Grey</u></a></strong></p> <div class="dk-editor-embed embed-responsive embed-responsive-16by9 center-block"> <div class="remove-embed-content">x</div> <a class="iframe_placeholder youtube dk-embed" href="//youtube.com/watch?v=0ZmR-T0jilA" data-frameborder="0" data-height="386" data-src="//www.youtube.com/embed/0ZmR-T0jilA" data-width="515">YouTube Video</a></div> <p class="is-empty-p"><span> </span></p> <p class="AlignCenter"><span>All health related discussion fair game. Credit to </span>Bésame for poll :-)</p> <p class="is-empty-p"></p> rss@dailykos.com (wilderness voice) Disability Health KosAbility silverlinings _2149734 Mon, 30 Jan 2023 00:00:11 +0000 I Lost Charlie Today... https://www.dailykos.com/story/2023/1/21/2148566/-I-Lost-Charlie-Today?pm_campaign=blog&pm_medium=rss&pm_source= <div> <a name="update-1674353784000"></a> </div> <div class="live-update-wrapper" data-epoch-time="1674353784000"> <a class="live-update-link" href="#update-1674353784000"> UPDATE: <span class="timestamp " data-localize-time="" data-epoch-time="1674353784000" data-time-zone="+0000" data-time-format="%A, %b %-d, %Y · %l:%M:%S %p %Z">Sunday, Jan 22, 2023 · 2:16:24 AM +00:00</span> · <span class="live-update-user">Steven Park</span> </a> <div class="live-update-content"><p>Elizabeth "Charlie" Latham Park, 65, passed away on January 21, 2023 due to complications of Amyotrophic Lateral Sclerosis. Charlie was known as The Caregiver to her loved ones during their times of need, and they in turn cared for her during Charlie's journey through ALS. Charlie was always an artist and during her last years transitioned from textile arts to painting.</p> <p class="is-empty-p"></p> <p>Charlie is preceded in death by her mother Neita Nell Latham, father Chester Wayne Latham, and brother David Wayne Latham.  Charlie is survived by her husband Steven Jerome Park, her daughters Ashley Diane Park-Brantley and Lisa Marie Park, her sisters Regina Lynn Latham and Mary Beth Porter, her brother Mitchell Wayne Latham, and her nieces and nephews.</p> </div> </div> <p><span>I lost Charlie today at 6:06AM. Words cannot describe the emotions  I feel. I feel comforted by friends and family as we share our stories to cope with this overwhelming grief.</span></p> <figure class="image-captioned width-xl align-right"><img alt="Charlie's Studio" class="width-xl" src="https://images.dailykos.com/images/1145475/large/CharlieStudeo.jpg?1671645696" title="Charlie's Studio"> <figcaption>Charlie in the happy place</figcaption> </figure> <p><span>I am fearful of dealing with my emotions, of writing my emotions and of speaking of my emotions.  </span></p> <figure class="image-captioned width-xl align-right"><img alt="lastsunday.jpg" class="width-xl" src="https://images.dailykos.com/images/1154832/large/lastsunday.jpg?1674353060" title="lastsunday.jpg"> <figcaption>Our Happy Place last Sunday</figcaption> </figure> <p class="is-empty-p"></p> rss@dailykos.com (Steven Park) ALS Disability Grief KosAbility Recommended _2148566 Sun, 22 Jan 2023 02:11:19 +0000