Dwayne Wilson shares his experience living with late-onset Pompe disease, explaining how he manages daily energy levels, adapts his mobility based on how his body feels, and relies on tools like hiking sticks and a wheelchair to stay safe and comfortable, while emphasizing the value of support within the Pompe community.
Transcript
My name is Dwayne. I live in Irvine, California, in Southern California. I am 57 years old, and seven years ago last month, I was diagnosed with late-onset Pompe disease.
I adapt to my Pompe disease on a daily basis. It depends on my energy levels. You know, kind of like your cellphone, your battery. You’re at 90%, 50%, 25%. You know, I, I take it on a daily basis when I wake up, how I’m feeling. Do my legs, do I get out of bed really easy? Do I have a harder time; are my legs sore and achy?
When I work in the office, I take more steps throughout the day, walking in the office from my cubicle to other areas in the building, and tend to use more energy. So then on those days, I rest more in the evening, after work, after dinner. So it depends on my energy levels. And then I also, you know, monitor how my body feels from day to day.
My muscles sometimes are stiff and achy from standing and and walking, and other times, you know, I feel good and have energy and strength all day long. So it depends on, on a daily basis how my body is feeling.
And over the course of the years, I’ve learned how to understand my body and that energy levels that I have. So I’m able to adapt to my situation every day.
Over the course of the years, where I’ve learned, something that I call hybrid mobility, where, you know, I can walk to my car no problem, and walk back to our house.
When I go to work to the office, and there’s a couple steps up the curb, and I had to start using a hiking stick because I noticed that I was having problems trying to climb up two steps. Just two steps. And I couldn’t climb up. There’s no handrail, nothing. So I needed to use a hiking stick.
So then I bought a hiking stick and started using the hiking stick, and then noticed, you know, if I go someplace where the terrain is a little uneven or, a park or someplace I want to want to spend time, you know, I use the hiking stick to move me around a lot easier. And also for balance, with the weak muscles in the legs and the calves and the ankles. Pompe patients tend to have falls, and you want to be safe when you’re outside.
For certain other activities, I learned that, you know, it’s good to have a wheelchair with me. I have an electric wheelchair that I use for activities. One just going to, like, a restaurant or event.
Sometimes the chairs are really small, low to the ground. Harder for me to get up where they’re really hard metal chairs with no backs, and then it’s just sore and achy sitting in the small chair for a while. So sometimes I use a wheelchair just out of the comfort of having a seat that’s comfortable for me to sit in for the activity that I’m going to do.
You know, my advice for people from in the Pompe community, patients, and family members is to lean on one another for support and encouragement and for advice. When I was diagnosed, the first thing I did was join some Pompe support groups on Facebook.
And, I learned about others going through the journey, and they shared their experience, which then allowed me to open up to share my experience. And I think the best way patients within the community can learn is by learning from each other.
