Making adaptations while living with Duchenne muscular dystrophy

In recognition of Duchenne Muscular Dystrophy Awareness Month in September, the Duchenne Muscular Dystrophy Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Duchenne muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MDSpotlight, or read the full series. 

Patrick Denger poses for a photo while vacationing in the Netherlands. (Courtesy of Patrick Denger)

My name is Patrick, and I’m a 31-year-old man living with Duchenne muscular dystrophy.

I live with my parents because I require 24-hour care. I need help with almost everything in my day-to-day life, including bathing, dressing, and preparing meals. However, I also strive to live each day to the fullest.

I travel a lot, despite it being incredibly difficult. I went to the Netherlands with my family, and I took a trip to the U.K. a couple of years ago.

I try to get out of the house often, whether it be to go to the movies or have dinner out with friends and family. I had my driver’s license for 10 years, which allowed me so much freedom, but I recently gave it up as my arm strength has gone down a lot and I wanted to stop driving before it became a problem. I still go out, though, as I have several people in my life who will drive my van to make sure I can still go out and do things.

Since I need so much care and a regular job would be fatiguing for me, I am a Twitch streamer. I play games as a way to provide entertainment for people. They can also interact in a chat that goes along with the stream.

Even this can be pretty tiring, though. I have to keep my energy up so I can not only play a game but also make sure I’m chatting and engaging with the people watching.

I like to play mostly Nintendo games, but I also like to branch out.

I’ve met so many people doing this, and a lot of the friends I have now I’ve made through streaming. I’ve had the chance to meet quite a few of these friends in person at conventions and just regular travel! I had a couple of friends come up to visit me for my birthday last year, and I attended a friend’s Christmas party down in Austin, Texas.

Although many of these friends aren’t directly affected by my disability, they are very helpful when they’re around me. I truly believe that my being friends with so many different people has changed how they view the world, even if it’s just noticing when things aren’t accessible.