Oh, the adventures we’ve had in a year of ‘On the Road to Pompe’

Reviewing a full 12 months of travel, activities, and living with a rare disease

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by Dwayne Wilson |

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Time: It seems like we never have enough of it. It goes by so fast when things are great, but when things aren’t so hot, it seems to drag on. We never have enough time to do all the things we want to do, and then one day, it’s gone. No one is making more time.

When I received my diagnosis of late-onset Pompe disease in November 2018, I didn’t know how much time I had left. I’d never heard of Pompe disease. I Googled it and found horrifying news that made me want to throw in the towel. It made me think my time was up at 50 years old, and I still had so many things I wanted to do and see.

But I decided to search for Pompe on Facebook and found there several support groups, where I started to connect with others who had the disease. I realized that my time was not up, that I had plenty of life ahead. Hearing from others living with Pompe disease gave me hope and encouragement.

I decided to shift my mindset to one filled with hope and positivity. I wanted to start sharing my journey with others and spread awareness of Pompe disease. That marked my new beginning as a Pompe warrior.

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Having fun and writing about it

Time really flies when you’re having fun, I learned. This week, I celebrate my one-year anniversary of getting hired by BioNews to write a column for its Pompe Disease News about my life with the condition. I never thought of myself as a writer before applying, but the column was where I could use what was then my tagline, one I’d been using since my first appointment with my neuromuscular specialist. It marked the onset of my new adventures “On the Road to Pompe.”

I feel like the past 12 months of writing my column, of sharing my adventures, have flown by. The year has been amazing, full of travel and activities I’ve done for the first time. It’s opening the door to even more possibilities, and I’m looking further into the future.

A man with a short goatee, mustache, and glasses flashes a peace sign deep in the stands of a baseball stadium, near the right field line. He wears a red sun visor and red T-shirt.

Dwayne attends a Los Angeles Angels baseball game last weekend. (Photo by Dwayne M. Wilson)

I traveled to Hawaii and Cancún, Mexico, each for the first time. I went on a guys’ trip to a football game in Santa Clara, California. I became a grandpa for the second time on Christmas. I saw our youngest son graduate from high school. My wife and I flew to Spokane, Washington, twice to visit family and see our two granddaughters.

In February, I climbed a wall for the first time. Now I can stand up from the floor with no assistance and no crawling to an object to help pull myself up. My physical therapy now involves using an exoskeleton, a lower-body robot called HAL, for Hybrid Assistive Limb. Doing regular physical therapy and aqua exercise has kept me moving forward.

I celebrated my 55th birthday in March, making me a part of the 55+ community and getting related discounts wherever I can.

My wife and I experienced half a dozen hockey games during the season. That was followed by eight Los Angeles Angels baseball games so far this season, with more to come. We went to three concerts. We’ve treated my mother-in-law to the Professional Bull Riders show twice, and I enjoyed comedians Kevin Hart and Jeff Dunham at the Honda Center in Anaheim, California. I even went down the lazy river at Wild Rivers water park and explored Disney California Adventure Park.

This Pompe champ keeps living his best life. The Energizer bunny must catch up to me some days.

Outdoors, a man with glasses and a light goatee and mustache flashes the peace sign in the bleachers, with a concert stage at a distance. He wears a Miami Dolphins green sun visor and T-shirt.

Dwayne at a Darius Rucker concert at FivePoint Amphitheatre in Irvine, California, last week. (Photo by Dwayne M. Wilson)

The upending of early expectations

When I first learned of it, I thought having Pompe disease was the end for me. It can be debilitating for some, but as we learn more about early diagnosis and treatments, we can possibly live and enjoy life longer. In fact, having Pompe has turned out to be beautiful for me. I’ve made lots of friends and have done things I hadn’t thought possible, including some that at one time, I might not have been brave enough to try.

I keep my mind focused on today and my future. The journey does have bumps, slowdowns, and fast lanes, but having a positive attitude keeps me motivated. Time keeps marching on, but I’m not letting Pompe get the best of me.

So today I’m celebrating my column for its first-year anniversary and thanking my readers and encouraging them to keep reading my story. I’m blessed to help inspire others to keep moving forward and thinking outside the box. No matter your journey — with a rare disease or without — I’ll be “On the Road to Pompe” for many years to come.

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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