I’ve been forced to make lifestyle changes continuously because of the progression of my facioscapulohumeral muscular dystrophy (FSHD) and other health issues. But I’ve regained some independence in the past few weeks after losing some capabilities over the past six months.
I have a new sit-to-stand cushion that helps me get up from my wheelchair more safely than my previous one, and a friend from church recently installed new thresholds in the kitchen and bathroom that allow me to get into those rooms in my wheelchair.
Now, I’m figuring out how to actually function in the kitchen from a seated position, and because our bathroom doorway is pretty narrow, I’m planning to get double hinges installed to give me more clearance when going through it.
Replacing the bathroom threshold has allowed me to completely retire my walker. I’d still been using it in the bathroom, but I can’t walk anymore, really, so I was having to slide my feet across the floor. Getting to the toilet, shower, and sink was a fall waiting to happen, so I’m glad I got the new thresholds installed before that occurred.
A work in progress
Using the wheelchair in the bathroom is still a work in progress, though. I’ve figured out where to position the chair to use the toilet or take a shower, but I’ve always stood at the sink to wash my hands or brush my teeth.
I’ve been experimenting with doing these tasks from my wheelchair, but, like most of us with FSHD, my arms don’t go up very well, so accessing the sink from a seated position hasn’t been easy. Perhaps I should have anticipated a time when I’d need a bathroom sink that I could roll under. Like the door thresholds, the sink wasn’t a problem until it was.
I did anticipate needing help getting out of bed, however, so we have purchased an adjustable bed that I didn’t start using until about a month ago. We also had a small rail installed on it that I began using, perhaps a year ago. The rail is supposed to have a 500-pound weight capacity, but the installer used very lightweight screws, and eventually, I managed to snap five of them off. My son, Ryan, was able to reattach the railing using much heavier screws.
I now do my best to scooch up to the top of the bed and position my legs just below the rail. I then raise the head of the bed until I’m nearly in a sitting position. I drop my legs off the bed, then push off with all my strength to get to a fully seated position.
Positioning is critical. One morning, I hadn’t positioned myself properly, and when I dropped my legs to the floor, I realized I couldn’t push myself into a fully seated position, and couldn’t get my legs back onto the bed either. I was stuck, so I had to wake up my wife, Wendy, and ask her to help me. I was able to make it out of bed eventually.
FSHD is like that. As soon as you solve one problem, you find yourself facing the next one. The struggle never ends, but let’s all “endeavor to persevere!”
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.
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