Muscle Memoirs: LGMD Experiences – a Column bt Patrick Moeschen

I have been involved with the annual Parent Project Muscular Dystrophy (PPMD) conference since 2002. Back then, the conference was attended by fewer than 50 people, almost no one living with muscular dystrophy (MD), and no representatives from pharmaceutical companies. The sessions were presented by scientists who did…

Each year, I attend at least one national gathering of people living with muscular dystrophy. In addition to learning about the most updated care standards, treatment strategies, and research initiatives, I’m able to bond with those who share a similar diagnosis, and have made some dear friends. The upcoming…

I recently read a New York Times article about stress. Whether you live with a disability or not, stress is a universal phenomenon. Life is full of stressful moments both large and small that can overwhelm the best of us. In the article, the author asks three questions designed…

Having a rare disease is not an easy life. I have limb-girdle muscular dystrophy, so in addition to the physical decline of my body, I also need to be hyperaware of my mental health. I don’t think humans were hardwired to adjust to life on their own with a…

My dear friend Colin Rensch had a saying: “If you think you can, then of course you can.” I met Colin because I live with limb-girdle muscular dystrophy, and he lived with Duchenne muscular dystrophy. Colin, who defined passion, purpose, and positivity, passed away last month at the…

Everyone recognizes the blue and white signs featuring a figure in a wheelchair that adorn certain parking spots. I call him the wheelchair guy, and he allows me to park close to public building entrances. The sign is an international symbol of disability. Of course, many disabled people are able…

As I grow older with limb-girdle muscular dystrophy, one of my biggest challenges isn’t medical; it’s social isolation. When I was younger, it was easier to say yes to all kinds of social activities. That is likely true for all of us, but with a power wheelchair, progressive…

According to the EveryLife Foundation for Rare Diseases, more than 30 million Americans live with at least one rare disease. Considering that’s nearly 10% of the U.S. population, these diseases don’t seem so rare after all. For decades, the disability rights movement has fought for the rights of…

I recently found myself rummaging through a very old collection of things from my childhood that my mother had preserved. Raise your hand if you have stuff like this: a box of certificates and trophies that you don’t remember, newspaper clippings of school events, scouting programs, a math paper from…

I hate muscular dystrophy. In my darker moments, I want to scream into the void of the universe — until I remember that I can’t scream anymore. In crowded spaces, others often can’t hear me, so I remain quiet. This goes against every fiber of my being; everyone who…