Columns

While writing this today, I’m marveling at how swiftly the passage of time has occurred. It’s been almost a year since I published my first column for Muscular Dystrophy News Today! In my debut column, I documented how, after more than two decades of battling Duchenne…

The diagnosis of Duchenne muscular dystrophy (DMD) for my sons Max, 17, Rowen, 14, and Charlie, 12, left me with layers of emotions that continue to make their way to the surface more than a decade later. I recently saw a post on a parenting social media…

In last week’s column, I mentioned that thanks to the encouragement of some fellow Duchenne muscular dystrophy (DMD) moms, I’ve begun using a Hoyer lift with my 14-year-old, Rowen. He’s one of my three sons with DMD. I’ve had the lift since Rowen became nonambulatory at…

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…

My family spent the end of June attending the Parent Project Muscular Dystrophy (PPMD) annual conference in Dallas. It was the first time I had joined the conference in person since before the pandemic, and the first time in nearly a decade that we participated as a family.

After 17 years, Shalom Lin is preparing to say good-bye to his caregiver, Glenda. Goodbyes are always painful but often necessary. Nothing lasts forever, so we must enjoy what we have with the people we love, he writes.

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…

The toddler was crying, hungry for a snack, standing just behind me as I sliced pieces of watermelon. But I was smiling. The big kids were in the pool, and I knew they’d be delighted to have watermelon on the deck. I cracked open the sliding glass doors and yelled,…

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…

While the boys are away, it’s time to play! Well, not exactly. My three sons with Duchenne muscular dystrophy (DMD) — Max, 17, Rowen, 14, and Charlie, 12 — are away this week at Muscular Dystrophy Association Summer Camp. But instead of rest, my husband and I are…