On the Road to Pompe - a Column by Dwayne Wilson

A long time ago, in a galaxy far, far away, I was celebrating 36 years on this planet. I’d just returned from the mountains in my landspeeder when I received a phone call from my sister. My dad, who was five months into his second round of…

Back in the summer of 2018, when I started experiencing some serious symptoms, I wondered if I had ALS or another similar disorder. I noticed I wasn’t able to stand up from a seated position. If I was sitting on the couch, I’d have to extend my arms…

Today, March 17, is the day to celebrate all things green and Irish. Look for a four-leaf clover and have some Lucky Charms for breakfast because they’re “magically delicious.” Drink some green beer and have corned beef and cabbage for dinner. Search for the pot of gold at the end…

This past week has been heavy on my heart, with my mind full of anger and frustration. I just want to go to the driving range and hit a bucket of golf balls to release some of the stress. While these feelings are not about my journey, they are…

This past week, my best friend, Joe, and his son Dane came from Montana to visit me in California. I decided to take Monday off from work to meet up with them so I could watch Dane, an adventurous young man, as he went rock climbing. In fact, he’s been…

Growing up, I got all my information from newspapers and encyclopedias. I used a typewriter to send letters to friends and family about special occasions. It seemed like it took forever. Then came computers, which changed everything. Information was now accessible as fast as my dial-up modem could connect. Today,…

Sometimes I wonder who designed spaces that are labeled accessible. Were the engineers or architects disabled? Did they actually understand the needs of wheelchair users, or did they simply do the minimum needed to comply with the Americans with Disabilities Act (ADA)? Was a disability plaque attached just for…

For me, getting diagnosed with late-onset Pompe disease was a relief. Although there’s no cure, treatment is available to help slow disease progression. After starting treatment, I wondered what my life would look like. Would I have to stay home? How long would I be able…

Growing up, I was mostly a healthy, overweight kid who seldom got sick. As an adult, I’ve had a career in the office equipment industry for over 30 years and have always had health insurance through my employers. No matter what type of plan was offered, I’d always pick the…

For 25 years, my vacations had always revolved around visiting family. My wife and I would pack up the minivan and take our four boys to Southern California to visit Grandma. We did all the fun things, such as visit amusement parks and the beach. But the thought of traveling…