Ok...so if you're not interested in non-political diaries, then this probably might not be the best diary for you. I hope to see you in another diary.
If you're interested in non-political diaries, or in psychology or neurology this might be of interest.
I offer this for three reasons.
- People often ask how I am doing and as I think of many of you all as my second, extended family, I thought this might be a good way to provide an update. Also I posted the info as comments and was told by some they might make a good diary, thus the diary.
- As a research psychology that in the past has studied the brain, what is going on in me fasinates me as a scientist, though scares me as a subject.
- It helps to put into words my thoughts to make sense of everything.
So, I just hope it makes sense and maybe helps to understand the whole issue of organic brain issues.
More after the break
As some of you might know I've been diagnosed with lupus which has led me to further health issues. None of that really matters here except for the cognitive aspects -- vascular dementia, seizure disorder and other topics. In a nutshell problems seem to be focused in the Inferior parietal lobule and in the arachnoid mater of the meninges.
A brain biopsy, several hundred CT-Scans, PET Scans, and many years later I am where I am now. So, I finally am starting to have answers...the problem is, the area at the heart (pardon the pun) of the problem is the brain, which is unfortuante and fortunate at the same time....
Because I am a psychologist often I know what is going on and can talk about it as a professional and can 'sense' things as they're going on and 'know' what the hopes and realistic outcomes are, it is a mixed blessing. Often it is how I would think a cardiologist would feel with heart problems. Sometimes I think "Maybe ignorance would be bliss"
Anyway, I am at heart a dumb guy. I realize this and view this whole thing as a learning experience. As a result I am like a small child in many ways, amazed by what is going on. So...I wrote the following in posts. I decided to copy them as I wrote them, because when I wrote them they are 1. Still accurate reflections of reality and 2. Often when I have 'a thought' it is more clear at the time compared to time passing.
Anyways, since the brain and why it does what it does and how it works is so interesting I think it is amazing. I am again not smart enough to make connections between damage in key areas and biochemical reactions to medications and the like, I'll leave that for people far smarter than I. I just know the observations are interesting, and I thought maybe others might think so.
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The first post came a night before the second, just as a general update. The second is a bit more sepecific.
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The next 'decision tree' is to see if it is progressing in a focal or a generalizable way. The main problem area is in one specific lobe. If, over time, everything stays in that lobe it is focal. If not...
What they will do is, over time, re-scan me (PET) and compare it to the one they did earlier last year to look at progression, etc.
I was taking Galantamine before at a very low dose before, and now I have been boosted to the highest possible dose as well as started on, and am now at the, highest dose for Namenda.
The good news is the Namenda has made a huge, huge, huge, did I mention huge difference. The bad news is that the Namenda has made a huge, huge, huge difference.
I could get all detailed and the like but it really isn't the time nor place for it. Suffice it to say, imagine there are two main types of cognition for living. Lets say One is addition and the other subtraction.
Over time you seemed to notice a decrease in your ability to subtract but since it was so gradual, and since you were so 'out' of it anyways, it was hard to tell anything anyways.
Then lets say you were suddenly given a drug that totally cleared your brain, and you realized:
"Hey! Wait a second, I can add as good as ever, but I cannot subtract. I know I used to be able to do it, I just don't know how...can't do it now..etc." and you never realized how far bad off you were, how many even simple problems you could no longer do.
Well...that's where I am at now. The one part of my brain is "Ramped" up. "Hey!!!!! Party!!!!" almost like the old brain I knew and loved. The problem is, the other brain is almost gone.
Anyway, I have no idea if the parallel makes any sense, and obviously it is not about addition/subtraction, but maybe it is still clear.
I start PT, OT, and ST next week. I go Tuesday and Thursday for the whole month of February. It is hoped that they can help with whatever PT, OT and ST helps with. :)
I am doing any and all things I can, since I am now 'ramped' up, taking steps, making decisions, filling out forms, doing what I can, in the hopes that everything gets taken care of.
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I woke up at 5 AM and could not fall back asleep.
Being on this med it is odd. I am 'aware' more now of how things are. Again as I said up there, the 'analytical' or 'decision making' part of my brain is one thing. The part I use for work, the part I used to get the Ph.D., to be able to discuss policy, etc. is fine...sharp, I can deal with stuff, see relationships, etc.
It clicks in "realizations" as to how things are, it is like watching a tv-show with someone with a brain disorder in a way - making observations "Interesting" "I did not know it had gotten so bad" "What an interesting difference in that .... but cannot" yet the thing is, it is me involved.
But...with this, as I said above, is a bad, bad price. I guess I am writing this as an update but also for me to try to help make sense of something that probably makes no sense. And maybe someone could collect this post and the one above in one simple (albeit long) thingie and somehow hand it to me in hard copy form so I can bring it to my doctors since it is by far the only 'explanation' I have of how everything 'seems' anyway...not sure if this makes any sense.
Before I just did not really know maybe? or care?
Now I am "aware" and "care" but ... its impossible to explain.
The best I ever came up with is the following piss-poor analogy.
You know when you're reading a book, and you set it down and come back to it... you recall the gist of what was going on but no real urgency to do anything like the characters in the book would if they were real? You remember the plot, the story-line, the "Oh year, he was doing this, she that, etc."
If it is out of my sight I forget about it, it does not exist. I would not even say I forget about it, since that is a mis-statement. It just is "not"
Then when something cues it in, all of a sudden it is like opening up a book and reading "Oh yes I remember this story. The character was about to cook dinner, pay bills....etc." and so I continue where I was at before the 'break'
It is not that I forgot its just, its hard to say it ceased to exist in my mind and have it be any different then be 'forgot' but...it just 'feels' different.
I have routines. Monday, Wednesday, Saturday, they are all the same to me. I have to have the same things happen, same type of interactions with the same objects and people. If I do not things do not get done. I do not forget to do them, they just 'don't exist' again, it is hard to explain.
Like eating, or getting the paper. I have a definite routine. If for whatever reason this gets altered then getting the paper or eating, or paying the bills does not get done.
Then the next time I am in a situation like it, when "I pick up the book again and read the story" it clicks in, and I will say "OH! I should eat" or "Oh, I should get the paper read" but if they somehow are not reput in the routine again I just never get on it again.
It sounds goofy, I am sure.
Its not motivation, since I am always motivated to eat, read the paper, etc. Especially when I have them. Its not 'intelligence' since I know how to get the paper, read it, etc.
I just do not know the right word. Is it failure to retrieve memories only? Act on them? I'm far too dumb a guy to figure much of what any of this means.
You might think, well since I am 'aware' why not just 'fix' it. I mean, eat, read the paper, pay the bills, set up a schedule, etc. I've tried. They just 'cease' to be, and its been getting worse over time, as I said. So I will go days at times, with somethings, w/o them. Just because well, I've no idea I am going w/o them until something clicks one in and the page gets put in front of me again and I say "Oh yea! I remember this story!" and it starts anew.
And it is not fun.