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Facioscapulohumeral muscular dystrophy (FSHD) primarily affects muscles in the face, scapular region, and upper arms, hence the name. Progression is different for everybody, but the condition can eventually affect most, if not all, muscles in the body. As an additional “bonus,” FSHD also can cause nerve deafness, a condition…

Since I began writing for Bionews, the parent company of Muscular Dystrophy News Today, I’ve connected with many people living with chronic illness outside of my “comfort community” — those with forms of muscular dystrophy (MD). While I live with limb-girdle MD, I have many friends…

This patient advocate's journey is full of emotional highs and lows as she navigates raising three sons with Duchenne muscular dystrophy. Despite the uncertainty, every victory, no matter how small, is a celebration of resilience and hope.

Living with Duchenne muscular dystrophy (DMD) has involved a series of challenges and triumphs, each shaping the person I am today. As 2025 approaches, I’m reflecting on that journey as well as imagining the path ahead — especially since the coming year includes a significant milestone for me. I’ll…

I’m more than a caregiver, but it took a recent life change for me to realize that. I’m a mom to seven children I share with my husband, Jason, including three of our sons — Max, 19, Rowen, 15, and Charlie, 13 — who live with Duchenne muscular…

My wife, Wendy, and I had a wonderful Sunday recently. We rose early and hit the road to Shanksville, Pennsylvania, where we had lived for over 41 years before moving to Pittsburgh to be closer to our kids and grandkids. I’d agreed to play for the 10:30 a.m. service at…

Last Saturday, I performed a monologue titled “Connection” at the Enabling Lives Festival here in Singapore. ART:DIS, a local nonprofit that uses the arts to support people with disabilities, organized the event as part of its BEYOND DIS:PLAY performing arts and theater mentorship program. The festival centered on a…

I think about things deeply, rolling ideas around in my head until they make sense. My creative side, the writer, likes to wonder in this way. And as an introvert who naturally tends to keep everything to myself, writing is often the way I can express ideas and feelings after…

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…

The power to influence or even direct people’s behavior or the course of events is part of a typical definition of “control.” When living with a chronic illness, as I am with limb-girdle muscular dystrophy, our desire to control the course of events can be a creative balancing act.