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…
Last night, my wife, Wendy, asked me if I’d like to go out to eat. For most people, this request wouldn’t require much thought. It’s a simple yes or no question. However, my facioscapulohumeral muscular dystrophy (FSHD) makes even simple decisions like this one much more complicated. FSHD is…
The symptoms of my facioscapulohumeral muscular dystrophy (FSHD) make staying positive a daily challenge. Many people with muscular dystrophy struggle with depression. This battle is magnified every winter as I also feel the impact of seasonal affective disorder (SAD). Exposure to sunlight helps our bodies…
Pennsylvania’s Somerset County, where I lived before moving to Pittsburgh a year ago, is situated in the Laurel Highlands, an area that is part of the Appalachian Mountain Range. At an elevation of more than 2,000 feet above sea level, the county often gets snow when other parts…
I just turned 66. I’m not sure if it was my birthday, the calendar changing, or perhaps the fact that the men in my family don’t live especially long lives, but I’ve really been thinking about what kind of legacy I’ll leave behind when I pass from this world to…
My wife, Wendy, and I have always loved having folks over to the house, especially during the holidays. We used to enjoy visiting our friends, as well. Having friends over was short-circuited when we moved to Pittsburgh in January, leaving a big part of our circle back in Shanksville,…
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…
Get regular updates to your inbox.