Doing the unthinkable and sitting on the floor with Pompe disease

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 onto the cushion or armrest to push myself up.

When sitting in a chair at the dining room table, I’d have to turn my body 45 degrees so that the corner of the chair was between my legs. Then I’d secure my hand on that corner to push off and stand up. I didn’t have the strength in my legs to stand up on my own. That scared me.

Soon I discovered that I was climbing the stairs to our second-floor apartment with only one leg. My left leg was so weak that I could no longer step onto it. I had to grab the handrail and pull myself up. At the top, I would be exhausted and fatigued. I hadn’t experienced this problem when we moved into the apartment a year earlier.

At the time, I didn’t even attempt to sit on the floor. If I was down there for any reason, I couldn’t get up on my own. I’d have to crawl to the couch or chair next to me to have the assistance of a piece of furniture to push myself up.

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March 10, 2023 Columns by Dwayne Wilson

I’m infuriated when patients are denied enzyme replacement therapy

Many people living with Pompe disease fear falling and being unable to get up on their own, whether they’re outdoors, in public, near the bed, or in the bathroom. Calling 911 or a neighbor for help can be demoralizing. And in some cases, falls are life-threatening.

I’ve worried about this danger since I was diagnosed with late-onset Pompe disease in November 2018. Shortly after my diagnosis, I started enzyme replacement therapy. My neuromuscular specialist prescribed me a BiPAP machine, and my wife and I moved to a ground-floor apartment. I started adding more protein to my diet and supplementing it with amino acids. I also started going to physical therapy to work on my balance, breathing, and coordination.

When many gyms and therapy facilities shut down during the pandemic, I had to think outside the box. I’d walk laps in the shallow end of the swimming pool. My wife and I got inflatable paddleboards, and I would sit on mine as if it were a kayak. I also practiced standing on it inside to get exercise and work on my balance.

Now, several years later, I can say that I’m no longer afraid of sitting on the floor.

Dwayne Wilson, center, celebrates his 55th birthday with his sons this month. Devin, left, just turned 18, and Dom, right, is 24. Both are carriers of Pompe disease. (Photo by Jean Gibson)

Finding new ways to smash Pompe disease

My wife and I just returned from a trip to Spokane, Washington, to see our kiddos. Our youngest son turned 18 and I turned 55 on St. Patrick’s Day. We also visited with our older son and daughter-in-law and got to hold our newest grandbaby, Alayna, who was born on Christmas Day. This grandpa was ecstatic.

Grandpa Dwayne sits on the floor with Adelaide, rolling the basketball back and forth. (Photo by Jean Gibson)

Our other granddaughter, Adelaide, who will be 2 on May 30, wanted to play with Grandpa and the basketball.

Without any hesitation, I got on the floor on my hands and knees, then sat down against the couch with my legs apart and started rolling the basketball to my granddaughter. She would roll, bounce, or kick the ball back to me, then run into my arms to sit in my lap. We played for a long time. I was able to enjoy making memories with Adelaide while sitting on the floor.

In the past, I never would’ve even attempted this play. But now I have the confidence and the ability to get off the floor on my own. I even got back down a couple of times to play with Adelaide more.

Grandpa Dwayne kisses his Christmas Day grandbaby, Alayna. (Photo by Jean Gibson)

I have two more precious reasons to keep this journey going for as long as possible. It’s a slow race, and I’m the tortoise taking my time “On the Road to Pompe.” By letting go of the fear holding me back, I can enjoy life to the fullest.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.