I was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) at age 14, when I was a freshman in high school. But even before that, I had begun adapting to my physical challenges. My FSHD journey actually started with a counselor from the Pennsylvania Office of Vocational Rehabilitation who visited…
Patient columnist Robin Stemple has many people who assist him, particularly his wife and daughter, and he is grateful for everyone who gives him help on a daily basis, often without him even having to ask.
I’ll admit that I was a support group cynic in my younger days. My attitude was that I’d figure things out on my own. I just couldn’t see the benefit of sitting around a table and talking to others about my struggle with facioscapulohumeral muscular dystrophy (FSHD). In retrospect,…
When I moved to Pittsburgh in January to be closer to my children and grandchildren, we were aware that we’d have to make modifications to our new home. Finding an accessible home in that city was impossible, especially during the pandemic real estate boom, when houses were selling…
Getting surprise help when you have facioscapulohumeral muscular dystrophy (FSHD) isn’t considered newsworthy. But maybe it should be. These days, it seems that most, if not all, of the news on television and social media is bad. These negatives aren’t limited to reports on wars, hurricanes, inflation, pandemics, and…
Back in the 1980s, as a high school special education teacher, I enjoyed giving my students an assignment at the start of the school year to see if they could follow directions. I told them to read the document I handed out before doing anything. The directions on the top…
Those who read my columns regularly will know that my last one was written just after my wife, Wendy, and my daughter, Jill, took off for a vacation in Croatia, Greece, and Slovenia. Over their two-week trip, we communicated by FaceTime a lot, and they seemed to be having…
It’s been about an hour since the garage door closed and my wife, Wendy, and daughter, Jill, set off on what I hope will be an incredible adventure. They’re headed on a 15-day vacation to Slovenia, Croatia, and Greece, and I couldn’t be happier for them. So why am I…
Every day is different with facioscapulohumeral muscular dystrophy (FSHD). As I wrote in a previous column, managing the condition is a balancing act. If I do too much, I’ll pay for it later. While some days are easier than others, each one is a struggle. I often wonder…
I recently talked with a friend about body language and facial expressions. She’d attended a public hearing where she ended up sitting just behind the main speaker. As the hearing progressed, she became certain she’d be seen on Zoom. That made her extremely conscious of her facial expressions and body…
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