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…
I was blessed to be able to provide music for the annual gathering of the United Church of Christ’s Penn West Conference earlier this month. Everything went well. My wife, Wendy, had plenty of help moving my equipment into the venue. The technical staff from PennWest California did…
If you’ve been reading my column since I started writing for Muscular Dystrophy News Today, you know I recently moved to Pittsburgh from Shanksville, Pennsylvania. Over the past few years, as my facioscapulohumeral muscular dystrophy (FSHD) progressed, I tried physical therapy (PT) twice to regain strength.
Years of living with facioscapulohumeral muscular dystrophy (FSHD) have taught me that it’s a balancing act on a high wire. It’s an everyday challenge to keep from falling off one way or another. Overdo it and you spend a day or two paying the price with…
It happened two weeks ago. Then it happened again yesterday. Is this my new normal? If so, what to do? Should I laugh? Should I cry? Is a little spilled milk worth getting upset? I’m an early riser, getting up each morning to say some prayers and read some meditations.
Each of us dealing with facioscapulohumeral muscular dystrophy (FSHD) is on a slightly different trajectory. For some, the disease is a series of small losses that level out to a period of relative stability. For others, the disease is a steady, steep decline. For some, the disease remains confined…
Get regular updates to your inbox.