I’m getting more comfortable using my walker. However, it just doesn’t pay to trust the darned thing. The other day in my bedroom, I was putting clothes away. I was planning to take a shower later in the day, so I thought I’d save myself some steps. I grabbed…
I’m currently continuing to do the exercises my physical therapist recommended during my last therapy session. However, it hasn’t been stopping the progression of my facioscapulohumeral muscular dystrophy (FSHD). While I’m hoping the exercises are slowing the progression down, it seems like it gets harder every day for me…
Idlewild, which is near Ligonier, Pennsylvania, is an old-style amusement park that’s been around since the days when the gentry from Pittsburgh took the train to their summer homes in the foothills of the Laurel Highlands. It’s a wonderful park for all ages, but it’s absolutely perfect for…
As Western Pennsylvania natives, my wife, Wendy, and I are both Steelers fans. Naturally, when the Steelers played the Dallas Cowboys a couple weeks ago, we tuned in. If you’re not a football fan, you’re most likely unaware that the game was delayed for about an hour and a half…
I’ve been disabled for over 50 years, and I spent over 30 years working with people with disabilities. The language surrounding disability has evolved in that time. For the most part, that’s a good thing. As an example, person-first language has become more common. It’s more appropriate to introduce someone…
I’ve had a walker with wheels for a decade. I got it after back surgery in 2014 and used it for a month or so. As a blind person with facioscapulohumeral muscular dystrophy (FSHD), I found it much more difficult to maintain my orientation without direct touch. I was…
My wife, Wendy, and I recently enjoyed a beach vacation in North Carolina with our family. That included our three children, Nicole, Jill, and Ryan, as well as their partners and our three grandkids, Iva, Julia, and Theo. Hurricane Debby moved out the day we moved in, and Tropical Storm…
Kevin Schaefer, the associate director of community content at Bionews, the parent company of this website, recently shared a thought-provoking article from Psychology Today titled “How Chronic Illness and Masculinity Intersect.” It has me thinking about what kind of man I am and want to be. The…
A few years ago, my wife, Wendy, and I took a mini-vacation to Philadelphia with my brother Ron, his wife, Judy, my brother Tim, and his wife, Diane. Ron, Tim, and I had visited relatives there on a regular basis growing up, so we cruised around the old neighborhoods where…
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?”…
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