When I was 13 and my brother, Tim, was 16, we got skis for Christmas. I’m not sure why Mom and Dad decided to get them for us. Jeannette High School, my alma mater, had a ski club, but Tim and I weren’t members. I don’t recall asking for skis. Perhaps Tim did.
However it came about, we suddenly had skis. Of course, we had to try them out, but how? Joining the ski club was free, but the cost of going skiing was more than we could afford. Tim had his driver’s license, but it was a long drive to any of the Western Pennsylvania ski resorts, another expense we couldn’t afford. We were advised that beginners should take lessons. We couldn’t afford those, either.
Tim and I decided to give it a try on a hill at the local country club where we liked to go tobogganing with friends. None of our friends had skis, so Tim and I were on our own. I’d also like to mention that while we had skis, we didn’t have ski poles. In retrospect, those might’ve been helpful.
I recall us walking up the rather steep, snow-covered hill, then strapping on the skis. We had no idea how to start, steer, or stop. We simply stood up, pointed our skis down the slope, and took off.
By now, you’re probably guessing that it didn’t end well. The hill was perhaps a quarter-mile long. It’s amazing how much speed you can pick up in such a short distance. It’s also amazing that neither of us sustained any permanent damage as we hurtled down the hill and crashed over and over again at the bottom.
Searching for that confounded ski lift
I’ve had facioscapulohumeral muscular dystrophy (FSHD) for over 50 years. I was actually diagnosed just a few months after that skiing misadventure. For many years, my disease progression was slow, with gradual loss of muscle function followed by plateaus when things remained relatively stable.
Now, my FSHD progression feels a lot like those teenage skiing excursions: I’m going downhill faster and faster, with no way of steering, slowing down, or stopping.
In the past, I felt like I had a little time to adapt to my body’s changes before the next ones surfaced. Currently, the changes are coming more rapidly than I can handle. As I barrel down this FSHD slope, I can feel the crash coming as I approach the base of the hill. All I can do is try to brace myself for the impact.
I’ve gone backward on my exercise program and can no longer perform the reps I was doing just a few weeks ago. As I move around the house, I feel totally unbalanced anytime I don’t have both hands on my walker. It seems harder every day to stand up from a seated position. I now have to brace my elbows on my knees and bend forward to blow my nose or anything else that requires two hands at head height. The elbow I hurt when I fell a couple months ago flares up every time I lean on it. And as I indicated in my previous column, I’ve had to stop using my accordion when I perform at nursing homes, because everything is too heavy.
All of these recent changes seem to have happened simultaneously, making me feel totally overwhelmed. It’s created a lot of anxiety, and I wonder how much time I have before I crash at the bottom of this FSHD hill.
What will my life look like after the crash? Will I be in a wheelchair full time? Will I be bedfast? Will my wife, Wendy, and my daughter, Jill, be able to provide the help I need? Can I get enough assistance to remain in my home, or will I end up in assisted living?
What, if anything, can I do to prepare myself for the impact? Should I stop doing things that are difficult and risky, but still possible for the moment? Should I lie down now and try to avoid a violent crash by gently sliding? Is there really such a thing as gently sliding with late-stage FSHD?
Right now, I have more questions than answers. I’ll be praying about all of this. I’ll share any answers I come up with in future columns. In the meantime, I’ll just try to stay upright on these skis and keep my balance.
If you’re careening down a steep slope of your own, try your best to keep your balance and ride it out. To quote a colleague of mine from years ago, “Are we having fun yet?”
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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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