I had an incident about a month ago that I’ve been thinking about ever since. It’s left me wondering if it’s time for me to begin using a walker, something I tried years ago without much success.
The Sunday after my wife, Wendy, had surgery recently, a friend brought me home from church. He dropped me off at our garage, and I made my way to the bathroom. As a blind guy in a wheelchair, I try to avoid having to use public restrooms, so this pit stop was necessary, as my daughter Jill and I were planning to grab lunch on our way to visit Wendy.
Exiting the bathroom, I turned left to go back to the garage. I didn’t trip over or bump into anything, which are the kinds of things that have caused me to fall before. There was no reason for me to go down. I know that facioscapulohumeral muscular dystrophy (FSHD) has weakened my left leg, but I didn’t realize how much until I put my full weight on it to make the turn. The leg just collapsed, and I found myself on the floor.
It’s been a couple years since I could get off the floor independently. It now takes two people to get me up, and at the time Jill was the only other person in the house. She’s strong, but not that strong.
Fortunately, I have a method for getting up that’s useful in emergencies, as long as stairs are nearby. If I’m at the bottom of the stairs, I crawl up three or four steps, then turn around and get myself in a seated position, with my feet extended to the floor. I’m then able to push myself up into a standing position.
If I’m at the top of a set of stairs, it works a bit differently. I crawl to the top of the stairs, then turn around and extend my legs down a few steps. Then I push myself up into a standing position and turn around. The challenge from here is that I have to pull myself up a few steps. It isn’t a pretty process, but I’m still able to get up a step or two, as long as I have a sturdy handrail.
Thinking of solutions
As I mentioned, I tried a walker years ago, but it just didn’t work that well. It was hard on the walls, door frames, and furniture. I also had some trouble maintaining my awareness of where I was at any given time. I ended up putting the walker in storage.
By the time we moved to Pittsburgh, I was a professional furniture surfer. I learned our new home literally by hand. I know every wall, counter, doorway, dresser, couch, and chair by feel. I certainly use all of the above for support, but I also use them to stay oriented to where I am in our home.
A walker would provide support on both sides, which would definitely make me more stable. However, using a walker disconnects me from all of my familiar waypoints. When I’m not touching one of these familiar landmarks, I don’t know where I am until I run into something.
As I contemplate pulling my walker out of storage to give it another try, I’ve wondered how I can spare our walls and doors from the damage of multiple crashes with a walker on a daily basis. Perhaps there’s a way I can pad some parts to soften the blows.
I’ve also been wondering if accessory kits are available for walkers. I carry my coffee mug around with me all day long. Do they make a drink holder for walkers? If memory serves, my walker has a built-in seat with a basket underneath that might be nice for moving stuff other than my coffee mug from place to place. I have balance problems when I’m carrying anything heavier than my coffee mug, so the basket might be a plus.
There are additional things to think about. Our home is on two floors. Do I get a second walker for the lower level or make Wendy or Jill carry the walker up and down the stairs for me? If I learn to navigate with a walker, could I use it at times when I’m out in the community? That would relieve friends and family of the burden of pushing me in my wheelchair, although they’d have to help me navigate. It’s a lot to think about.
I think it’s time to talk to my doctor about this issue. Perhaps it’s finally time for some physical and occupational therapy, too. Pittsburgh is blessed to have a world-class medical system. There may be new devices or therapies available that I’m not aware of. I’m going to start exploring. If I find out about anything that’s life-changing for those of us in the FSHD community, I’ll let you, my readers, know.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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