When three of my sons were diagnosed with Duchenne muscular dystrophy more than 10 years ago, I shared everything we experienced on social media and found support and understanding. But as they grow older, weaker, and more dependent on me, I find caregiving harder than I could’ve imagined. I…
Last night, my wife, Wendy, asked me if I’d like to go out to eat. For most people, this request wouldn’t require much thought. It’s a simple yes or no question. However, my facioscapulohumeral muscular dystrophy (FSHD) makes even simple decisions like this one much more complicated. FSHD is…
Pulling into a parking spot at my oldest son’s high school, I hit a parked car with my van. Thankfully, there was no damage to either vehicle, and the car’s owner, sitting in the front seat when I hit it, was amiable and understanding. I could safely unload my son…
Amid a topsy-turvy start to 2024, I’ve marked a date on my calendar I’ve been looking forward to more than any other: Valentine’s Day. While it might not be a particularly significant day for many others, it’s a big deal for me. It’ll be my first time celebrating the day…
I do too much. You might assume I’m talking about caregiving because you’re reading a column written by a caregiver. And in part, you’re right. But mostly, it’s an admission that I’ve been doing things for my three sons with Duchenne muscular dystrophy (DMD) that they can…
I received an email on Jan. 12 from Duchenne UK, an important Duchenne muscular dystrophy (DMD) nonprofit in the United Kingdom. Its announcement: “Breaking News! First treatment for all [DMD] patients approved in U.K.” It went on to note that the Medicines and Healthcare products Regulatory Agency,…
I love to read, but finding time to sit down with a good book can be challenging in my busy house. As a mom to seven and a primary caregiver to my three sons with Duchenne muscular dystrophy (DMD), quiet time is often interrupted by my children. Occasionally, however,…
The symptoms of my facioscapulohumeral muscular dystrophy (FSHD) make staying positive a daily challenge. Many people with muscular dystrophy struggle with depression. This battle is magnified every winter as I also feel the impact of seasonal affective disorder (SAD). Exposure to sunlight helps our bodies…
One of my favorite early-summer memories is from when my sons Max and Rowen were younger. Both lovely little boys — one blond-haired and blue-eyed, the other dark-haired and brown-eyed — squealed with laughter upon discovering a frog in our front yard. Max held the frog up in his hands…
There is joy after a diagnosis of Duchenne muscular dystrophy (DMD). There is joy after the loss of ambulation. There is joy in the midst of watching Duchenne slowly work its progressive, muscle-wasting way through my sons Max, 18, Rowen, 14, and Charlie, 12. That may be hard…
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