Columns

Tales of Traveling to Hawaii With an Electric Wheelchair

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…

Lab Work Is No Fun for a Child With Pompe

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…

The Benefits of Attending an In-person Pompe Presentation

I attended an in-person educational presentation on Pompe disease this month in Hershey, Pennsylvania, that was hosted by Sanofi, the creator of two drugs that are treatment options for Pompe. I got to hear great information about “Taking Charge of Your Pompe Disease.” Most of the presentation…

My Son’s Good News From His Checkup With the Pulmonologist

Last week, my 4-year-old son, Cayden, had a routine checkup with his pulmonary specialist. These visits occur about every six months. While we are certainly used to the appointments, we left with a great report this time, which isn’t always the case. Cayden’s pulmonologist has been seeing him since before…