On the Road to Pompe — Dwayne Wilson

Have you missed me since October? Did you wonder if something Pompe-related had happened to me? Did I get lost “on the road to Pompe,” or did my engine break down somewhere? Truth be told, I got lost in a bank of fog and didn’t know when it…

When I was in my 30s, I started having issues with my lower back. Muscle stiffness often led me to the chiropractor for an adjustment. Sometimes I could barely walk or rotate my body, which would necessitate a trip to the physical therapist. Most of the time, I was told…

Before I was diagnosed with Pompe disease, I had never previously thought about accessibility. I had never pondered what accessibility means, why it is important, or what I would do if I ever had to deal with it in my lifetime. Then the year 2018 hit me…

While growing up in Southern California, I spent nearly every day in the summertime with my friends at the beach. We’d excitedly grab our towels and boogie boards and set out for one of the many beaches within 30 minutes of where we lived. But during all those summers, I…

Time: It seems like we never have enough of it. It goes by so fast when things are great, but when things aren’t so hot, it seems to drag on. We never have enough time to do all the things we want to do, and then one day, it’s gone.

A couple months ago, I shared with readers about a new technology I was trying out for physical therapy, a powered exoskeleton suit called HAL — for Hybrid Assistive Limb — designed by the company Cyberdyne. It’s used by the RISE Healthcare Group, of which SoCal Elite…

When Dwayne Wilson found his career to be too physically demanding with Pompe disease, he had to change trajectories. But now, he says, he finds freedom in a cubicle.

When I was a kid, I liked to build things with Legos and Lincoln Logs. I had Tinker Toys and Erector sets to build cars, cranes, buildings, and more. All of the blocks, bricks, and logs were of different sizes and shapes, and when they were put together, I had…

I remember a day when I could play three softball games on a single, sunny Sunday afternoon in Spokane, Washington. As a valuable left-hander, I was allowed to pitch and spend more time on the mound. Granted, these experiences were in my 30s, and the league was co-ed and affiliated…

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…