On the Road to Pompe - a Column by Dwayne Wilson

Life has been busy lately. My wife and I traveled to Spokane, Washington, in June for our son Devin’s high school graduation, and then our friends from Montana visited us in Southern California for a week. I also saw my neuromuscular specialist and did some routine six-month tests and…

I’ve always thought the stereotype that “spa days are for the ladies” was a thing. Now I realize that spa days are for everyone. And they especially benefit me, a guy who has a muscle weakness disease called Pompe. There are days when my legs just feel achy, my…

Back in the day, I had to do a report for school and needed information about a country. I don’t remember which one, but I remember asking my mother for help writing the report. Her response was, “Go grab the Encyclopedia Britannica, the one that starts with the first letter…

Last January, I wrote about how I adapted to having a high-deductible health plan. One way I did that was by putting off physical therapy until I met my deductible. At that point, I’d restart my physical therapy for the year. I hit my deductible in March and…

When I was diagnosed with late-onset Pompe disease in 2018, I didn’t know what my life would look like moving forward. When I was told the disease had no cure, my mind went into a tailspin, taking me down into a deep, dark place. However, my doctor…

I have this recurring dream where I’m driving a sublime green 2015 Dodge Challenger down the Pacific Coast Highway toward the beach. I call it my “I have no muscle” muscle car. It’s trimmed out in light blue with “Pompe Champ” and “Smashing Pompe” printed on the sides and hood.

Back in high school, I had a few friends and many acquaintances. One of those acquaintances, Scott, was close to two of my good friends, Rick and David. Scott and I never hung out, but I knew who he was. After graduation, all of my acquaintances, including Scott, seemed…

Whenever it was time to play dodgeball in my elementary school years, I was always picked last. Growing up, I wasn’t physically gifted. I couldn’t run, and I moved slowly. For a kid, my balance was uncharacteristically off. Despite being raised in Southern California, I was unable to surf,…

“Every Move Counts” is a message that’s stuck with me in recent days, helping me build a healthier view of my exercise goals and limitations. That was a theme of International Pompe Day on April 15, reaffirming that no matter how big or small, every move does…

I’m going to be dating myself here, but let’s go for it. Not quite the Stone Age, but around the time “The Flintstones” was on television, I remember watching the “MDA Labor Day Telethon” one year with my parents. I wasn’t sure why we were watching this and not some…