How hybrid mobility fuels my life with Pompe disease

Having a variety of mobility aids allows a columnist to adapt and keep moving

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by Dwayne Wilson |

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I have this recurring dream where I’m driving a sublime green 2015 Dodge Challenger down the Pacific Coast Highway toward the beach. I call it my “I have no muscle” muscle car. It’s trimmed out in light blue with “Pompe Champ” and “Smashing Pompe” printed on the sides and hood. Green is the official color of muscular dystrophy awareness, while blue is one of the Rare Disease Day colors. Because Pompe disease falls under both umbrellas, I can spread awareness as I drive all over Southern California.

Then I wake up from the dream.

A man with his back turned to the camera sits in a blue wheelchair on a pier, looking toward the beach.

Taking the “Dolphinator” out for a spin on the Newport Beach pier fuels Dwayne’s hybrid mobility. (Photo by Jean Gibson)

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Remembering words of wisdom as I assess my movement with Pompe

The power of hybrid

As I drive to work on a typical Tuesday, I count at least 20 Teslas during my quick 15-minute commute. Everywhere I turn, I see advertisements for electric and hybrid vehicles.

A hybrid vehicle has two sources of energy: an internal combustion engine and an electric motor that uses energy stored in batteries. Hybrid vehicles are better for the environment than traditional gas-powered ones, as they produce fewer emissions.

When you’re driving fast in a hybrid vehicle, it uses the gas engine. At slower speeds, or when parked or idling, the electric motor takes over to save fuel. The vehicle uses both energy sources to achieve its best performance. Hybrid cars are becoming increasingly popular.

A man wearing a green and blue tie-dye T-shirt and green shorts walks across the grass at a park while using his hiking stick for support. There appears to be a baseball field to his left, and gentle hills rise in the background.

Dwayne uses his hiking stick for stability while walking on uneven ground at a park. (Photo by Jean Gibson)

As I travel “On the Road to Pompe,” it feels like my body relies on a hybrid mobility due to my late-onset Pompe disease. My energy levels vary daily. Some days, my muscles feel strong, but on others, they feel weaker.

On days when I feel weaker, I might use my hiking stick to walk to my car and to my desk at work. Sometimes I use the hiking stick to help me stay balanced on uneven surfaces. It’s a must-have at places like parks and fields. When I go to the beach, a ski pole helps me walk through the sand and reach the ocean.

A man stands on a beach with his back to the camera. He's wearing a blue shirt that says "Smash Pompe" on the back, and he's leaning on a ski pole with his left arm. It's a bright, sunny day, and he's looking out toward the ocean.

Walking on sand can be challenging. Dwayne uses a ski pole to make it safer and more enjoyable for him. (Photo by Jean Gibson)

Then there are times when I’ll use my electric wheelchair, the “Dolphinator,” to get through the day’s events. The wheelchair allows me to conserve energy and keep my muscles strong for the activity at hand. Hybrid mobility enables me to enjoy life to the fullest.

As I keep my Pompe muscles moving, there are times when no mobility aid is needed. I’ll decide how I want to move each day based on how I’m feeling and the activities I’m doing. This will change from day to day, even moment to moment, so I’m constantly thinking about my mobility and trying to plan ahead.

Just because someone uses a wheelchair doesn’t mean they can’t walk. Sometimes I surprise people when I stand up from my wheelchair to go use the restroom, or park it to walk into a crowded store or get in line at a concession stand at the ballpark.

A man sits in a blue electric wheelchair with a utility cart attached to the back of it. The cart is full of several bags, and a small dog sits atop it. They are stopped outside on the street, next to a row of garages.

By driving the Dolphinator with a utility cart attached to it, Dwayne is able to go to the neighborhood store and bring Guido the dog along for the ride. (Photo by Jean Gibson)

I have multiple ways to get from point A to point B, and those options keep me on my toes. So look out for the Dolphinator, or a tall guy with a hiking stick on the move. I am living my best Pompe life because my hybrid mobility fuels me.

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.


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