Columns

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?”…

“What can I do to help?” It was my husband’s answer to the long rant I’d just finished. I didn’t know I needed an answer, but his caught my attention. Beyond the weight of my responsibilities, I was trying to carry myself — and the heft of that was crushing…

Last month was tough for me. Although celebrating my partner’s birthday on June 12 was a welcome distraction, I still had a June I’d like to forget, mainly because I spent the entire month recovering from a foot infection that hospitalized me for the last three days of May. And…

“I didn’t think you’d jump with us,” said my daughter Mary, 9, breathing heavily as she bounced from trampoline to trampoline. It’s true; I’d never taken her or her little sister Callie, 2, to the trampoline park before. But we do fun things, I thought. After thinking some more, however,…

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…

Recently, our family had terrific reasons to celebrate. I have three sons with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. They are doing things we never imagined they’d do when they were young. Max, who recently graduated from high school, was in “The SpongeBob…

When three of my sons — Max, 18, Rowen, 15, and Charlie, 13 — were diagnosed with Duchenne muscular dystrophy between July 2010 and August 2011, my learning curve was practically a vertical line. When the diagnosing doctor first said “Duchenne,” it was the first time I had heard…

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…

I feel relaxed — refreshed, even. We’ve had almost two weeks at home without any appointments or travel. The kids are complaining of boredom, but I’m letting boredom reign! It’s a beautiful but rare occurrence for my family of nine. My husband, Jason, and I have seven children: Lexi, 23,…

What’s it like to have three children with Duchenne muscular dystrophy (DMD)? That’s the question I’m asked more than any other, as a mom and caregiver to three sons with DMD: Max, 18, Rowen, 15, and Charlie, 13. Of course, that question is only asked by parents or grandparents…