Sean Doerr is sometimes known in the Pompe community as the man with the ambulance-turned-motor home, which he affectionally calls the “PompeTrek.” Sean has Pompe disease and type 1 diabetes. I recently spoke with him via video chat about what it’s like living with these two chronic illnesses. Excerpts…
living with Pompe
As summer approaches, I’ve been thinking a lot about whether I want to move my children into a new house. We could use another bedroom, as I have three little boys now, and my youngest, Kylan, who’s 7 months old, will be ready to transition out of my bedroom soon.
Social media is right at our fingertips. Most adults, teenagers, and even preteens are equipped with cellphones or some other device that can access the internet. While the web can be used for many purposes, one of my favorites to date has been to browse social media for people who…
When I was in my 30s, I started having issues with my lower back. Muscle stiffness often led me to the chiropractor for an adjustment. Sometimes I could barely walk or rotate my body, which would necessitate a trip to the physical therapist. Most of the time, I was told…
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.
I remember a day when I could play three softball games on a single, sunny Sunday afternoon in Spokane, Washington. As a valuable left-hander, I was allowed to pitch and spend more time on the mound. Granted, these experiences were in my 30s, and the league was co-ed and affiliated…
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…