On the Road to Pompe — Dwayne Wilson

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…

A long time ago, in a galaxy far, far away, I was celebrating 36 years on this planet. I’d just returned from the mountains in my landspeeder when I received a phone call from my sister. My dad, who was five months into his second round of…

Back in the summer of 2018, when I started experiencing some serious symptoms, I wondered if I had ALS or another similar disorder. I noticed I wasn’t able to stand up from a seated position. If I was sitting on the couch, I’d have to extend my arms…

Today, March 17, is the day to celebrate all things green and Irish. Look for a four-leaf clover and have some Lucky Charms for breakfast because they’re “magically delicious.” Drink some green beer and have corned beef and cabbage for dinner. Search for the pot of gold at the end…

This past week has been heavy on my heart, with my mind full of anger and frustration. I just want to go to the driving range and hit a bucket of golf balls to release some of the stress. While these feelings are not about my journey, they are…