The search for better accommodations for my disease progression continues

If you’ve read my last few columns, you’ll know that I’m struggling with a lot of new issues due to the progression of my facioscapulohumeral muscular dystrophy, along with joint issues from a head-on collision with a drunk driver years ago, and just getting old. As I’ve grown weaker and stiffer and pain levels have increased, I’ve been looking for equipment and accommodations that might help me regain some independence.

Home health services haven’t really made me more independent if I interpret that term to mean doing a task totally on my own. I’m getting help with showers, toileting, meals, dressing, and many other tasks. While I’m not doing these tasks without assistance, I’m also not depending on my wife, Wendy, or my daughter, Jill, to accomplish them. In my book, that’s a win, as it relieves some of the pressure from my primary caregivers.

I’ve also just obtained a new sit-to-stand cushion for the wheelchair I’m using around the house. My previous cushion was a “catapult” style device that we originally purchased to place on my kitchen chair. When I transitioned to a wheelchair recently, we moved the old cushion to the wheelchair to help me stand to transfer. While it worked well on the kitchen chair, it didn’t work in the wheelchair. I tended to forget I was sitting on a catapult and would lean forward to pick something up and end up on the floor.

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My new cushion, from SitnStand, works on air and picks me straight up instead of pushing me forward and up. It doesn’t do anything unless I push a button, so there are no longer any surprise trips to the floor. It has a nice, 2-inch layer of foam on the top, so it’s also a huge improvement in terms of comfort when compared to the catapult.

It’s a challenge to move myself around the house in a wheelchair. One thing that has caused a huge loss of independence is the fact that I can’t get the wheelchair into the bathroom or the kitchen.

I now leave my walker just inside the bathroom door. I pull the wheelchair to the door threshold, which is too high for me to get the wheelchair over. Then I inflate my new cushion to a height that allows me to stand and use the walker to navigate in and out of the bathroom. Unfortunately, my slide/shuffle technique for navigating around with the walker isn’t very safe anymore. I’m afraid that my next fall will be in the bathroom.

Our kitchen floor is about 3/4 of an inch above the other floors in the house. When I try to take the wheelchair into the kitchen, I just spin the wheels and go nowhere. We’re now eating in the dining room, but that only solves part of the problem of being locked out of the kitchen. I’m now totally dependent on Wendy, Jill, or a home health aid to prep meals, do my old dishwashing job, make a cup of coffee, or even get a glass of water.

To solve the problem of full access to the bathroom and kitchen, I’m now in the process of trying out a power wheelchair equipped with lidar technology (short for light detection and ranging) to help me navigate the house safely. Last week, at the University of Pittsburgh Center for Assistive Technology, I tried out a chair equipped with a fairly simple system with sensors that buzzed when you were getting close on your right, left, or behind you. I’m glad I tried it out, because  I couldn’t react fast enough to stop the chair before crashing into a wall on my left side. Since the chair didn’t “see” anything directly in front of it, I also nearly ran over Wendy.

The vendor of the chair, along with university staff, are in the process of getting another lidar system to try that’s supposedly smarter than the one I tried. I’m hoping it’ll work for me, but I’m not overly optimistic. This technology might not be ready for use by a blind guy.

I’m looking around for some type of angled piece of material to install at the bathroom and kitchen entrances that would allow me to get up and over in a manual wheelchair if the power chair option doesn’t work out. I’m hoping to get back to making a cup of coffee for myself and using the bathroom without feeling like I’m on a tightrope and fighting to keep my balance. As a person of faith, I have to believe that God has included all of this in his plans. Hopefully, that plan includes using the bathroom safely and making a cup of coffee independently!

Note: Muscular Dystrophy News 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.