16 March 2010 - by ~ 0 Comments

Blogger Introduction: Jonathan

My partner and I have been together for over fourteen years. We live in a nice little house in the suburbs, with a fenced in yard, two dogs, and hope to have children someday. If you didn’t know about my disability, we would just be your average couple making our way in the world. However, I am a 33 year old male living with Duchenne muscular dystrophy who is wheelchair-bound and dependent upon non-invasive ventilation while I sleep and during much of the day.

This site is primarily for those of us who either have muscular dystrophy already or are already familiar with it, but for those who don’t know, Duchenne muscular dystrophy is a progressively degenerative muscle-wasting disease that eventually results in severe physical disability. Skeletal muscles weaken throughout life, first making walking difficult, then later (usually by age 10-13) resulting in wheelchair reliance. In the past, it was unusual for many of us to make it into adulthood. My uncle passed away in his early 20s a few decades ago, and many thought that to be extraordinary at the time. Today, thanks to technological advances and pharmaceutical interventions, as well as innovations in medical protocols, many of us survive well into our 20s, 30s, and occasionally even 40s or 50s. This new generation of long-lived people with Duchenne muscular dystrophy is what we refer to when we use the term DMD Pioneers.

I’ll likely be writing here about things that make life easier, like adaptive technology and other innovations, but also things that make life worth living in the first place. That can include anything from love and relationships to accessing video games and other entertainment. I might also occasionally write about what it means to be happy or content, and how that might relate to someone with a disability like ours. We have had a bumpy ride with Duchenne, but I am a happy person that loves life. You never know what it will bring next, only that it’s almost always something interesting! I don’t want to miss any of it.