On the Road to Pompe — Dwayne Wilson

As a society, we celebrate birthdays, anniversaries, and births. Some celebrate when their son or daughter goes to college or gets married. Others might do a happy dance when their team wins the World Series or Super Bowl. Personally, I celebrate the day I was diagnosed with a rare disease.

Imagine getting ready for bed at night. You sit down on the side of your bed with your feet touching the floor. The bedspread and sheets are turned over already, and you lie down on your mattress flat on your back. In that instance, you gasp for air and the…

Our Hawaii vacation was full of activities and adventures every day, but living with late-onset Pompe disease, I didn’t know how my body would respond to all the opportunities to do new things. Would my leg muscles be sore and achy every day? Would I need to…

A recent Hawaii vacation I took with my wife and friends was incredible, as I wrote in my last column. I’m enthusiastic about sharing even more about my experiences traveling while living with late-onset Pompe disease. I consider myself to be semi-ambulatory and can walk for short periods…

I was excited yet nervous for my recent bucket-list vacation to Hawaii with my wife, Jean, her best friend from Montana, and one of my co-workers. The four of us flew six hours to Honolulu on Hawaiian Airlines and stayed on the ninth floor of Marriott’s Ko Olina Beach Club,…

Things seemed to be happening so fast as 2018 was ending. But it would go down in my books as the worst year of my life. Seven months earlier, back in April, we lost our oldest son, Adam, to a brain tumor. He was only 22 years old and full…

When I was a kid growing up, my mother used to say I was husky. I wasn’t very active, and I rarely found myself exercising. You definitely would not call me athletic — I never could do a pushup, situp, or pullup like the “normal” kids. It was just the…

I was sitting in the small waiting room at UCI Health’s ALS & Neuromuscular Center, in Orange County, California, early on a Monday morning. The date was Nov. 19, 2018, and as I waited for my name to be called, I thought back on the previous six months and…

I remember the day vividly. It was an overcast morning on Saturday, Nov. 17, 2018. My wife and I hopped in the car and headed north toward Marina del Rey, California, giving me an hour to contemplate all the thoughts racing through my mind. A few months earlier, my neurologist…