Muscle Memoirs: LGMD Experiences – a Column bt Patrick Moeschen

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…

We all have bad days, but hopefully they are few and far between. Bad days can overwhelm, dampen your spirit, and leave you feeling angry, sad, or depressed. You may need to take a break from whatever has caused them. First, let me clarify that I am talking about bumps…

After my muscular dystrophy diagnosis in August 1985, I thought I could hide my symptoms from my friends at school. When I started seventh grade a few weeks later, I was in a new building with kids from all over town, not just my neighborhood. I was determined not…

I’d like to share my thoughts on what the word “strength” means. The United States has had one president who used a wheelchair: Franklin D. Roosevelt. During his time in the political spotlight, he did his best to conceal his disability. Many believe he did this to project…

I’m feeling funny today — humorous, in fact. Brimming with sarcasm and a splash of laughter, today feels like a cocktail, served over ice and garnished with a tiny umbrella and an extra-long, twisty straw. The main ingredient? Wit, with a dash of mischief. Why? Why not. Every so often,…

Words matter. For that reason, I’d like to share my thoughts on language, chronic illness, and how words shape societal views. I believe the way we use language can improve how patients living with rare conditions are seen, understood, and treated by the world at large. I’ve lived with…

I am conflicted about the word “cure.” Dictionary.com defines the noun in several ways, including: “a method or course of remedial treatment, as for disease. Synonyms: antidote, specific, restorative, remedy” and “a means of correcting or relieving anything that is troublesome or detrimental.” In my view, the idea…