Hi there. My name is River, and I've written a few KosAbility diaries before: on diabetes, dialysis, and erectile dysfunction (with my husband Charles CurtisStanley), and I can't remember right now if there were others. Another medical condition I deal with is having lousy balance and lousy knees, and it's only gotten worse since I got my kidney transplant on February 18, 2011. I'm tough and I deal with a lot of different disabilities, and I wanted to share with you a bit about living with the tendency to fall.
 KosAbility is a community diary series posted at 5 pm ET/2 pm PT every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. Our use of "disability" includes temporary as well as permanent conditions, and small, gnawing problems as well as big, life-threatening ones. Our use of "love someone" extends to beloved members of other species.
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My knees first started going out when I was 18. I've always been awkward, maybe because I have always had narrow feet. My feet used to be a Slim (AAAA) and my middle-aged spread brought them out to a Narrow (AA). I have a hard time finding shoes that fit me. Then there are my knees. I have open patellas; if I were a Flatcoated Retriever, a breed that's known for patella issues, you wouldn't breed me. And that causes my knee joint to go out from time to time, and that has always caused me to fall over. I remember the time I had my knee go out at a Day on the Green, one of the few I went to as a ticketholder instead of something at which I worked. I was right in front of the sound booth on a blanket with friends, crowded into the center of the field, and while it was easy for my friends to get one of the Bill Graham Presents Bluecoat concert security staff to signal Rock Medicine, it took them a long time to get out to me and even longer to take me back to their medical room. I think all told it was over an hour. Every time my knee goes out, I fall over.
But it's not just my knee going out. As I've aged, my balance has gotten measurably worse. It was always pretty bad; sometimes I trip myself, sometimes one or the other knee just gives out, sometimes I'm pretty wobbly. This worsened once I got my kidney transplant. I think that one of the medications I'm on now may have something to do with it, but nobody knows the actual cause, and this isn't a listed side effect of any medication. Like my memory issues, it may have something to do with my (well-controlled) diabetes and (well-controlled) high blood pressure; although I'm on medication and diet regimens that keep both conditions where they ought to be, they still have an effect, according to my doctor. I don't know that either has an effect on my balance, but they might.
I don't get up easily, either. My knees work less well than they used to. I can walk at an acceptable pace, on the slow side but not creeping along, but if I fall, I used to struggle to get up. These days, if I don't have something I can pull myself up with, I need help to get up.
It's been getting worse and worse. I've fallen down the stairs at home a number of times, luckily without incident except for the time in 2007 I permanently cracked my tailbone by slipping on ice on the outdoor steps leading up to the front door. It came to a head when I fell twice this past Thanksgiving Day, once in a party dress right in front of my mother and her partner at the front of her hotel. I had to be helped to my feet by hotel staff. I wasn't even wearing heels, despite being dressed up; I was in flats. Luckily, although I fell hard on concrete, I was all right, though a bit shaken up as I always am when I fall. My knees, both of them, just gave out and I fell straight down.
That's when I gave in and started using a hiking stick as a cane. It's a good thing I had a hiking stick in the closet from when we went to Yosemite National Park with my family half a decade ago. I now take my stick just about everywhere. I generally use my right hand to hold my stick and position it as my support when I put my right foot down with every step I take except when in our house. My right knee is more likely to collapse than my left knee, although either or both can go at any time; however, averaged out, the right knee's the more likely one to give, so it makes best sense to support myself with my stick on the right, although I also carry my purse on that side.
For a long time, I have only used purses that can be worn cross-body, so the weight seems to be more on my left shoulder although the purse itself hangs on my right side. I sometimes use the handle instead of the shoulder strap to position it on my right, stick or not, but usually I only do that when I'm going a short distance and will be able to put it down quickly. It helps to use a shoulder strap if I'm going to carry a purse rather than using a fanny pack, but I carry a large purse because I've yet to find a fanny pack that can accommodate my medicine, large bulgy wallet (with many cards like Costco, my medical cards and AAA), 3 pairs of glasses and 10" tablet. I suppose I need a good backpack, but cross-body purses work well for me for some reason.
Anyway, the day after Thanksgiving, I started using a stick full-time. It was a hard thing. I have been eying walkers for some time and have talked from time to time about dragging out the basic folding walker I was given during my hospital stay after transplantation and needed to take home. I used it for months after I got my transplant, but it's been sitting downstairs for the last 2 1/2 years or so. I considered it strongly, but my stick seems to work fairly well. It's better for me and how I walk than a cane would be, although I'm using it as a cane; it lets me keep my head up, walk upright, and put my arm out in front of me and slightly to the side rather than keeping it close to my right side and more sideways. I tend to depend forward on it rather than to one side. I've been eying walkers again, though, every time we go to the specialty pharmacy, and may yet wind up getting a much less basic model with brakes and a seat.
Here are some ways I've learned to cope with falling:
First and foremost, I've practiced how to fall when I have the opportunity. If I can fall onto mats, someplace where I can get to somewhere that I can pull myself up, even if I have to crawl there, I do. When I was younger and more physically able, I took classes in unarmed self-defense, and one of the things I was taught was how to fall. I practiced enough that it's become a sort of muscle memory thing with me. Actually falling over has also taught me how to fall (and how not to). I tend to collapse straight down rather than falling forward, letting myself put a hand or both out to help catch myself so I don't hit as hard, and say the hell with it if I happen to be carrying something like my purse. I don't fall on top of anything I'm carrying, though; that, too, is practiced. I'm a firm believer in practicing for contingencies in case something happens. Over the course of my life I've had a lot of practice in falling, whether accidentally or practicing on purpose, and it comes in handy.
The stick helps a great deal. I can sort of lean on it a little if I'm standing, catch myself with it when I start to fall (it's kept me from actually falling quite a few times in the past 2 1/2 months), and help keep my balance with it so I don't fall in the first place. If you have balance issues, check out a cane or a good hiking stick. You can take a stick with you into any facility if you make clear that it's a cane. It is harder to stow than a cane, so be aware of that if you choose to use one. I haven't yet tried to take it by air, so I don't know what would happen there. If you travel by air a good deal, you might look for a collapsible one. Charles has done a bit of research on this issue and at least domestically, as long as it doesn't have a sword in it, you should be able to take it through the TSA and onto the plane. Hiking poles and trekking poles are OK. Walking sticks of any height seem to be OK. Canes are OK. I have no idea what the rules are for international travel, but you should be able to take your stick or cane by air with no problem. If you use a walker, you'll probably have to gate-check it.
My balance issues are why I now have a disabled parking placard, and I use it. When I raised the falling issue with my GP, he asked me how far I could walk without falling, and I told him it was across the grocery store one way (I've fallen on the return trip more than once except when holding onto a shopping cart). He immediately started filling out the state form for a disability placard. If you have balance issues, raise this question with your doctor if you haven't done so already. If your falling is partly dependent on the amount of walking you're doing as mine can be (there is a greater chance of my falling the farther I go), you will help yourself if you use your disability placard. Just because you have an invisible disability (invisible without the stick, anyway, since my walk looks like most other people's) doesn't mean it isn't a legitimate disability, so do what you need to do to take care of yourself!
Using a stick doesn't make you weak. This is something I admit I've struggled with a lot. I don't want to be dependent on anything or anybody except Charles, but I need my stick and I've had to come to grips with it. I keep it right next to the front door. Even when I go outside with the dogs, I take my stick. Bitty, thank goodness, doesn't really need a leash when she's out in front of the house, but Duke does. Another issue is that Duke, whom we just adopted January 14, is a big dog at 2 and very strong; he's a shepherd/Malamute mix and born to pull. And pull he does. I have been advised by people who know me, my capabilities, and dogs very well that we shouldn't have adopted him and we should let him go back to the rescue and let them adopt him to someone where he'll have a quality of life more satisfying to him. It's very difficult to even talk about this because I've fallen in love with him, but he needs at least 2 hours of hard exercise every day and I can't give it to him. If I didn't fall...if I could walk better and didn't need a stick...if I were capable of running with a dog rather than slowly walking and trying to keep him from pulling me over or down the hill (where I can't get up)...but none of these "ifs" are the case, and it's breaking my heart. I have to be careful about what kind of dog I adopt. Just because my first dog ever, when I was 28, was the same mix he is doesn't make me suitable for him at 54.
Using a stick doesn't make me weak, but it does make me unsuitable for a dog I love, and I have to come to terms with that, too. Falling over doesn't make me weak. It makes me disabled, but it doesn't make me defective. These are things I need to remember. The more often I fall or almost fall and catch myself with my stick, the more I need to remember this. I am differently abled. I am still whole and human and just fine the way I am.
If you're dealing with balance issues, I feel you. I understand what you go through. I think you're just fine the way you are, too. Practice falling if you can get up, even if it takes assistance to get up (a stick can be assistance enough sometimes). If you use a walker, tell me how you like it and how to choose a walker for myself when that time comes, because it is coming.
For my birthday, which was this past December, Charles got me a really nice stick. There is a craftsman on Vashon Island whose work he had seen on the ferry, and he was exhibiting at a community center bazaar on Fox Island shortly after my birthday. I chose a very distinctive stick made of deadfall madrone, with a handle wrapped in leather, and covered in marine spar varnish so it's suitable for our Northwest weather. It's capped with a hard rubber cap at the bottom end and was custom-sized for me by the craftsman right at the show. We spent a couple of days following our tenth wedding anniversary on the Oregon coast and I used it to go surfwalking, wearing my waterproof winter boots to enjoy walking out in the surf and finding living sand dollars when the surf was out. Here's a picture that Charles took of me with my stick.
Kitsap River surfwalking with her stick
Balance issues don't have to be as limiting as they might seem at first. Compensating for it by walking more slowly and deliberately, using aids, and stabilizing yourself as best you can can be freeing instead of limiting. Walk slowly, and carry a big stick.
