My facioscapulohumeral muscular dystrophy (FSHD) causes a variety of symptoms that affect every aspect of my life. Sitting up in bed is a challenge. Getting dressed is tiring. Standing up has become a laborious process. I’ve had to adapt the way I brush my teeth. Eating is a…
I’ve been on my own for the past 10 days while my wife, Wendy, and daughter Jill have been vacationing in Iceland. It’s been challenging. A couple years ago, when Wendy and Jill traveled to Croatia, Greece, and Slovenia, I wrote a column titled “Good to know that I…
I’m a musician, and so are my brothers, Ron and Tim. We’ve all played professionally, but it’s been a long time since we’ve played together. That changed last month, but let me explain why it was such an event. Back in the late ’70s we were part of the…
Last summer, I wrote a column about my beach vacation with my family. It was an incredible trip, but I had my doubts about future travel. With my facioscapulohumeral muscular dystrophy (FSHD) progression accelerating, I had to acknowledge that future travel might be difficult, if not impossible. My daughter…
In a daily devotional I’m reading titled “Incurable Faith: 120 Devotions of Lasting Hope for Lingering Health Issues,” author Andrea Herzer describes pain as a thief, stealing her joy. Her words ring true for me as I navigate life with facioscapulohumeral muscular dystrophy (FSHD) and other health issues. Relentless…
I’m an early riser. As I mentioned in a past column, I like to wake up early, get dressed, make coffee, and start the day with some quiet prayer and devotion time. However, I’m also a very sound sleeper, with some help from melatonin, sleep medication, and a comfy…
I’m between two anniversaries. Today is the 36th anniversary of the collision I had with a drunk driver that cost me my eyesight and almost cost me my life. Saturday will be my 45th wedding anniversary. The car crash happened on the evening of June 11, 1989. I was returning…
During a recent facioscapulohumeral muscular dystrophy (FSHD) wellness group meeting via Zoom, we each shared how we were feeling about our disease journey. One participant said, “I feel like I’m always in transition.” I can relate to that. With FSHD, the need to adapt seems never-ending, a topic that…
If you’ve read any of my recent columns, you know that I’ve had a lot of health struggles of late. I’m back on the medical merry-go-round with physical therapy, occupational therapy, medical appointments, and tests that tie me up multiple days every week. I’m struggling to stand up from…
In a recent column, I talked about paring down my music rig and retiring my accordion. Over the years, I’ve transitioned from a 120-bass professional accordion to a 32-bass student model that, while less than 15 pounds, is now too heavy for me to handle. Because of my facioscapulohumeral…
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