I live in South Western region of the Canadian province of Ontario. I'm 33 years old and live with both my parents in a small three bedroom home with a good sized yard. It has a small man made pond of my design and a good sized vegetable garden. I have a younger sister who lives near by with her husband and two young sons. My life is a pretty tranquil and laid back, I am quite content with my books, music, and television programs. I am totally dependent on a wheelchair and I am also 100% dependent on a ventilator via tracheotomy. I also have a gastric feeding tube or more commonly known as a G-tube because I have difficulty chewing and swallowing solid food. I will be occasionally writing about aspects of living with Duchenne Muscular Dystrophy, such as the daily and long-term challenges I face as well the solutions I've found that help me overcome such challenges.
DMD Pioneers.org
Blogger Introduction: Stephen
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.
DMD Pioneer Chat
I am trying out a chat component for the website called BlastChat. DMD Pioneers chat has been a popular activity in the past and with this we can hopefully bring our scheduled chat's back. Check it out and tell us what you think. The direct URL for it is: http://dmdpioneers.org/chat/
Twitter updates
The site is now configured to automatically send a tweet once a new article is published. You can find DMD Pioneers on Twitter at http://twitter.com/DMDPioneers.
Website Update
All the previous content from the old website has been added back to the website. The homepage has been configured as a blog and will soon be used as a blog written by fellow DMD Pioneers. From time to time we may invite guest bloggers to share their unique perspective.
Website Redesign in Progress
The DMD Pioneers website is currently under redevelopment to better serve our fellow pioneers. In doing so, we want to keep, our founder, Jeff McAllister's vision for the website alive. The goal of the new website is to keep the content fresh and relevant and to further promote the DMD Pioneers Mailing List. All previous contributions to the website have been retained and will once again be part of the website.










