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…
Muscle Memoirs:LGMD Experiences — Patrick Moeschen

A human being since 1972, Patrick Moeschen recently retired after 28 years of teaching music at the middle school level in a public school setting. Diagnosed with Becker muscular dystrophy (MD) in 1985, and re-diagnosed with limb-girdle 2E MD in 2012, Patrick leads an active life working with nonprofits and advocating for individuals living with MD. Patrick lives with his wife Vanessa, and two sons, Timothy and Teddy in a handicap accessible home that they designed in Salem, New Hampshire.
I have lived with limb-girdle muscular dystrophy (LGMD) type 2E/R4 for more than 40 years. Initially, apart from stretching and visiting a neuromuscular clinic twice a year, I didn’t think much about managing my symptom progression. So much has changed. In January 2024, I was forced to put my…

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…
When in the course of human events, it becomes necessary to make choices, we must first consider our options. Congratulations! By reading these words, you have made a choice to crawl into my brain (terrifying) for a few moments and learn about what is currently on my mind. If you…
I’ve always had a robust sense of humor. Some people have told me that I’m witty and quick to respond to a funny situation while also defusing tense conversations with laughter. I think it’s a piece of my armor that protects me from my rare chronic illness, limb-girdle muscular…
“He who has a why to live can bear almost any how.” — Friedrich Nietzsche I love a good quote as much as the next person. When I was teaching music in middle school, I’d sometimes write inspirational or thought-provoking quotes on the whiteboard to encourage conversation or reflection. At…
Dear doctors, I am writing to share my knowledge about living with a rare, chronic condition called limb-girdle muscular dystrophy. There are many types of muscular dystrophy (MD), ranging in age of onset, severity, and common symptoms and comorbidities, such as heart and lung involvement. But…
I’ve written columns about community and connection. I chose these topics because they’re relevant not only to those of us with rare, chronic conditions, but to everyone. I write through the lens of living with limb-girdle muscular dystrophy, but I strive to connect to all of society.
Recent Posts
- What LGMD and a lengthy hospitalization reminded me about life
- Maintaining ankle range of motion with muscular dystrophy
- Rarely Speaking: Living Well with MD: Real-World Hacks & Daily Realities
- How my attitude toward health checkups has changed over the years
- Highlighting the lived experiences of MD patients at conferences