Dwayne Wilson, of Irvine, California, was diagnosed with late-onset Pompe disease in November 2018 at 50 years old. He shares the ways his perspective on exercising with Pompe disease have changed in the years since his diagnosis.

When I was first diagnosed, relatively just a little over five years ago, I was originally told, “Oh, you shouldn’t exercise because you’re going to damage your muscles.” And then, you know, a little into the journey — I don’t know, a year or so into the journey — the mindshift switched to like, “Well, you need to exercise the muscle that you have left. What muscle you have left is good muscle. You can make that muscle stronger. You should still be exercising and working out.”

So you have a muscle weakness disease that makes you weaker, but if you don’t do anything, it’s just gonna make you more weaker. And you wanna preserve the muscle you have left because there’s a wide range of symptoms for this disease and a wide spectrum of when people get diagnosed, depending on your environment and your gene mutations and everything. Some people get diagnosed, you know, in their 20s and 30s, 40s, 50s.

And now with newborn screening, babies are being diagnosed with Pompe right after birth, which gives them a longer time to go through treatment and not have the glycogen build up in the muscles, where I was diagnosed when I was 50 and it’s like I’ve had 50 years for all this to happen. And I don’t know how much muscle I’ve lost, but when I felt like I couldn’t climb up steps anymore and I couldn’t get up off the floor, my legs were weaker, I know I’ve lost some muscle.

So the idea to not exercise, I felt like, was not right for me. And so I decided that I need to do some exercise and work out and learn how much I can do that my body will accept before it gets sore and achy, so that’s probably what I would say.