Making a Guys’ Trip a Reality With Pompe Disease

It’s been four years since I was diagnosed with late-onset Pompe disease. At that point, I felt like my life was over. There were still so many places to go, events to attend, things to see. I thought I’d never be able to experience all I hoped to do someday.

However, after starting enzyme replacement therapy, getting a BiPAP machine, scheduling physical therapy appointments, and moving into a ground-level apartment, my outlook on life improved. Spreading awareness about Pompe disease filled me with joy, and I was passionate about bringing hope and positivity to all.

Since then, I’ve been able to accomplish many of my dreams.

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November 18, 2022 Columns by Dwayne Wilson

Why I Celebrate the Day I Was Diagnosed With Pompe Disease

Embracing a new experience

A huge Miami Dolphins fan since childhood, I was presented the opportunity to travel to San Jose, California, this past weekend to watch the Dolphins play the San Francisco 49ers at Levi’s Stadium. I hadn’t been to a Dolphins game since 2000, when I saw them play the Seattle Seahawks in a playoff game at the Seattle Kingdome. Naturally, I was very excited for this adventure.

However, I wasn’t sure if I was ready to travel without my wife. As I’ve written in previous columns, she supported and encouraged me on our recent dream vacation to Hawaii. But this would be a guys’ trip with my good friend Louie Reyes Porta.

I’m always thinking things through (maybe even overthinking) and making sure I’m prepared. While this has helped me manage Pompe disease and plan for the future, it can also cause my mind to fill up with questions.

In this case, I started worrying about traveling with someone besides my wife. How would I manage my electric wheelchair at the airport? How would I navigate obstacles?

But my wife told me, “You must stop overthinking everything and just have fun. Enjoy some time with your friend.”

Dwayne Wilson’s electric wheelchair, the “Dolphinator,” waits to board a flight to San Jose, California. (Photo by Dwayne Wilson)

And so, I began taking care of all the logistics. I found some accessible seats for Sunday’s game on Ticketmaster and purchased VIP tickets for a fan club event on Saturday night. Louie and I had planned to attempt the seven-hour drive from Southern California, but I ended up booking us direct flights. I also made reservations for a hotel and rental car. Now I just needed to find close parking for the game. I bought a pass for Green Lot 1, which offered accessible parking.

All that was left to do was wait the four weeks until takeoff.

An unforgettable weekend

Although I was scared to travel without my wife, Louie showed me that my worry was for naught. I never had to ask him for help with my wheelchair; he just stepped in and did what needed to be done. He carried the bags with my chair’s extra lithium batteries and joystick, and he even helped put on the travel cover. I didn’t have to stress about whether I could physically do everything myself. I was able to enjoy the flight because of my kindhearted friend.

Throughout the rest of the trip, Louie was there for me. I did all the driving around town, and he would lift my Fold & Go Wheelchair into or out of the trunk every time we stopped. He was getting his 50-pound reps in! It’s incredible to have such a good friend in my life.

On Sunday, we had a blast at the football game. Even though our team lost, it was about the experience of sharing in the fun with other “Dolfans” and creating memories that will last a lifetime.

The Pompe Champ, Dwayne Wilson, enjoys the view of the Miami Dolphins game from his accessible seats at Levi’s Stadium. (Courtesy of Dwayne Wilson)

Living with Pompe disease isn’t the end of fun experiences. For me, it opened the door to a whole new world to live in and explore. I appreciate things more, and I’m grateful for all the incredible people in my life.

My amazing guys’ trip and weekend of football opened my eyes to all the possibilities “On the Road to Pompe.” All I need is a great travel buddy to help alleviate the burden of traveling with a disability. It’s good to know that I don’t always need to bring my wife along, even though I’m blessed to have her unconditional support through my difficulties.

Dwayne Wilson, left, and Louie Reyes Porta leave the football game after an incredible day of football and friends.(Courtesy of Dwayne Wilson)

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.