Columns

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…

In a column I wrote last month, I talked about finally deciding to try some physical therapy, despite more than a little pessimism that it would be effective. Actually, I’ve been struggling with this decision for over a year. I finally followed through and completed a five-week…

Last week, my girlfriend and I caught the 2020 filmed version of Lin-Manuel Miranda’s award-winning Broadway production “Hamilton.” The recording, which we watched on Disney+, featured the original cast performing at the Richard Rodgers Theatre in New York City. Exactly a month ago, we attended a live performance of the…

My oldest son, Max, 18, graduated from high school last Sunday. Graduation is a milestone for all who achieve it, but since Max lives with Duchenne muscular dystrophy (DMD), it felt like an even greater accomplishment. I was bursting with emotion, including joy, relief, happiness, and fear.

Regular readers of my column will know that my wife, Wendy, and I moved from Shanksville, Pennsylvania, to Pittsburgh in January 2023 to be closer to our children and grandchildren. There have been some issues, but the move has worked out well. We see a lot more…

Life with Duchenne muscular dystrophy (DMD) doesn’t get easier as time goes by, but it’s made better by laughter, love, and everything that’s learned along the way. Three of my seven children have DMD: Max, 18; Rowen, 15; and Charlie, 13. As you might imagine, my life is…

Last Saturday, I attended a focus group on behalf of a local patient advocacy community of which I’m a member. The agenda for discussion was a nationwide allied health strategy here in Singapore to be implemented in coming years. For those unfamiliar with the term allied health, Kent State…