Coping methods

After receiving my diagnosis of late-onset Pompe disease, it felt like a weight had been lifted off my shoulders. Finding out that I had a rare disease with a treatment was amazing. At the time, I don’t think I comprehended the fact that those treatments would last forever.

In some alternate reality, receiving my diagnosis of late-onset Pompe disease would’ve made all my problems go away. But in this universe, my rare disease is only one piece in the puzzle of my life. Six months before my diagnosis, our oldest son, Adam, passed away at age…

For my diagnosis day celebration last week, I indulged and had a doughnut. We also celebrated Thanksgiving early with some apple and pumpkin pie. I really do enjoy eating desserts. But when I received my diagnosis of late-onset Pompe disease four years ago, I learned I needed…

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.

In 2018, Dwayne Wilson was struggling under the weight of a Pompe diagnosis. Today he is living life to the fullest. Learn how he adjusted his thinking and adapted his life to thrive with Pompe 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…

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,…

My 4-year-old son, Cayden, had a routine checkup with his metabolic specialists during a recent Pompe clinic day. Although we always know what to expect during these visits, that’s both a blessing and a curse. After Cayden sees the doctor and completes a physical therapy session, we then…

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…