In my last column, I wrote about the increasing difficulties I’m having safely navigating my home using the “furniture surfing” technique. I wondered whether it was time that I break out the walker and give it another try. I also mentioned my plans to contact my doctor to discuss starting physical and occupational therapy.
A year ago, I wrote a similar column about whether it was time to start physical therapy. At the time, my family was urging me to try it because I was now living in the “big city of Pittsburgh,” where therapists surely were more knowledgeable than their colleagues “in the middle of nowhere,” where I used to live.
Facioscapulohumeral muscular dystrophy (FSHD) is a pretty rare condition, but perhaps some therapists in Pittsburgh have worked with someone who has the condition. Last year, I gave this possibility a lot of thought before rejecting it, opting instead to up my game with additional exercise at home.
Based on those past experiences with physical therapy, I thought my own practice of water therapy might be a good alternative. But while that therapy is probably available somewhere in Pittsburgh, it means obstacles for me, a blind guy in a wheelchair. I’d need to find transportation, navigate in and out of an unfamiliar facility, undress, exercise, shower, dress, and wait for transportation back home, which just sounded exhausting. My schedule wasn’t full at the time, but still, there were other things I wanted to do with my time and energy.
But last month I fell, which was a wake-up call for me. My home exercise routine may have slowed down my disease progression, but it hasn’t stopped it. I admit there’s a part of me that, after 52 years of struggle, simply wants to stop fighting FSHD, especially since therapy is likely to cause pain and will lead to only minimal improvement.
But I’ve reached a point where my instability is scaring me enough to pursue any type of therapy that might keep me on my feet a little longer. Currently, anytime I’m on my feet, there’s a real possibility that I’ll fall.
I’m glad my wife, Wendy, and daughter, Jill, are living with me, and I’m grateful for their support. In typical circumstances, they could work together to help me up after a fall. However, Wendy recently had surgery, so if I fell, we’d have to call someone to come over and help me get up.
A better solution
I’m taking action to do what I can to fight off the effects of FSHD. After consulting with my primary care physician, I decided to start some in-home physical and occupational therapy, which eliminates some of my concerns.
A physical therapist will arrive later today to get things started. Of course, it isn’t water therapy, but I’m hoping we can come up with some exercises to help me rebuild some muscle strength and improve my balance. I can’t say I’m incredibly hopeful, but I owe it to myself and my family to try.
In my last column, I discussed the challenges I’ve had using a walker. I had difficulty staying oriented to my environment, which was hard on the walls and the furniture.
The first occupational therapist who contacted me had no experience working with someone who was totally blind. I politely told them that I wanted to work with someone who had such experience.
Fortunately, Blind and Vision Rehabilitation Services of Pittsburgh, a nonprofit agency, has an occupational therapist who has experience working with blind people who have mobility challenges. I’m hoping to have them start an evaluation sometime next week.
And so we begin the rehabilitation process again. Wish me luck! If you’re a praying person, I’d appreciate those, too.
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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