As I was finishing up a recent interview with the host of “FSHD Radio: Straight Talk with Tim Hollenback,” a service of the FSHD Society, Tim’s final question was, “If there’s one thing you’d like people to know about facioscapulohumeral muscular dystrophy [FSHD], what would it be?”…
Working Through the Process - a Column by Robin Stemple
Last week, my wife, Wendy, and I finally got around to starting the process of purchasing a new mattress. We realized when we moved to Pittsburgh in January 2023 that we needed to replace our mattress, which has served us well for many more years than the sleep experts…
Over the past couple months, I’ve shared my decision to try physical therapy in an attempt to slow the progression of my facioscapulohumeral muscular dystrophy (FSHD). I also shared that I haven’t seen a lot of benefit from the physical therapy, at least in terms of regaining…
In a column I wrote last month, I talked about finally deciding to try some physical therapy, despite more than a little pessimism that it would be effective. Actually, I’ve been struggling with this decision for over a year. I finally followed through and completed a five-week…
Regular readers of my column will know that my wife, Wendy, and I moved from Shanksville, Pennsylvania, to Pittsburgh in January 2023 to be closer to our children and grandchildren. There have been some issues, but the move has worked out well. We see a lot more…
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…
I had an incident about a month ago that I’ve been thinking about ever since. It’s left me wondering if it’s time for me to begin using a walker, something I tried years ago without much success. The Sunday after my wife, Wendy, had surgery recently, a friend…
I received an overwhelming response to my last column, in which I grappled with feelings of uselessness when my facioscapulohumeral muscular dystrophy (FSHD) prevented me from helping in the way I would have liked to do. In this case, I was sitting at home while my wife, Wendy,…
As I write this column, my wife, Wendy, is undergoing abdominal surgery. I won’t go into details, but it’s a pretty extensive procedure, so I’m concerned. I’d like to be there for Wendy, but due to my health issues, it’s just not possible. Instead, my daughter Jill is with her…
I’m reading “Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance” by Ady Barkan, a late lawyer and political activist who had ALS. It’s been a tough read so far. In the book, Barkan recounts his experiences after being diagnosed with ALS…
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