Remembering words of wisdom as I assess my movement with Pompe

“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 indeed count.

To me, having Pompe disease means waking up each morning and wondering how my muscles will feel. How will I move today? Will it be a good day, or will it require more rest and planning? What activities can I take part in today? Am I still able to work out and make it to the office without being late?

With all of these thoughts floating in my head, I decided to spend International Pompe Day working out at the fitness center in my apartment complex. I rode the stationary bike for 15 minutes, followed by some exercises on other machines. Then, I exercised my back and arm muscles. I like to use very light weights and do a higher number of repetitions for two or three sets.

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Dwayne Wilson rides a stationary bike during a recent workout. (Courtesy of  Dwayne Wilson)

The next day, I rode the stationary bike again for 15 minutes and did some machine exercises for my chest and shoulder muscles. I like to alternate between my “push-and-pull” muscles every other workout. It was good to learn these things from physical therapy as a basis for my own exercise routine.

My mind wanted to do more that day, but my wife, Jean, reminded me not to overdo it. When I overexert during a workout, I can hurt myself, and that takes several days before my muscles feel better. It ends up being a setback instead of helping me get ahead.

Before my diagnosis, when I was having more serious symptoms, my legs always felt like Jell-O. I couldn’t pedal the exercise bike for more than a few minutes. My confidence is much better now that I have been on treatment for a few years and have done physical therapy. I have the energy and strength to exercise and enjoy being active.

Dwayne Wilson uses a bicep curl machine to exercise his arms. (Courtesy of Dwayne Wilson)

But of course, these workouts tend to happen in spurts. It’s all good for a few months, and then something happens and a couple months may go by without me working out. That habit is why I need to hear “Every move counts.”

My workout routines have their ups and downs, just like life. Some days I need words of caution not to overdo exercise, while on other days, I need encouragement to work out well. When I want to be hard on myself for not getting enough done, I need to remember that it’s a victory to move even a little bit. Reflecting on my days before treatment, simply being able to move at all is something I can’t take for granted.

I want to keep moving my Pompe muscles every day, no matter the amount. Doing what I can, while I still can, propels me to enjoy life to the fullest. Every move counts “On the Road to Pompe,” as my journey moves forward living with late-onset Pompe disease.

What moves can you make?

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.