My willingness to educate others about MD benefits all of us

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 to let any of them know that I was “different.”

I ask you to reflect on your attitude and outlook on life at 13. How would you have reacted if a doctor told you that your muscles were going to grow weaker over time? That you’d eventually be unable to run, climb stairs, play sports, and ride your bike? And would later lose the ability to walk, drive, and perform other activities that most adults do without thinking?

Now imagine not having the internet and not knowing anyone else with muscular dystrophy. What would you do?

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I emotionally hid. I ducked questions from friends at school about walking on my toes, suddenly losing balance, and making modifications in gym class. I thought that denying my diagnosis would somehow make it not real. My teenage self didn’t understand that denial doesn’t work in the long term.

Fast forward a year to eighth grade, when one of my close friends saw me hand a note to the gym teacher, excusing me from gymnastics. He confronted me and told me that my true friends wouldn’t judge me for having muscular dystrophy; in fact, they’d encourage me to be more open about what was happening inside my body.

A new perspective

That one conversation changed my outlook. In high school, I took an anatomy class as a science elective and gave a report to my class about muscular dystrophy, muscle cells, and a potential intervention that was considered cutting-edge in 1991. (Spoiler alert: The intervention didn’t work.)

I encouraged questions and was surprised when my classmates wanted to know more about my day-to-day life than about cell membranes. One kid asked me how I handled fatigue, especially when walking around and climbing stairs all day at school.

Improvising, I told the class that I had an elevator key (we used those back then so that kids wouldn’t take the school elevator for a joyride, or worse!). But I also shared that I had a method for climbing stairs: I always needed to be on the right side of the staircase so that I could step up with my stronger left leg, hold the banister and pull myself up with my right arm, and then swing my right leg onto the next step. I’d repeat the process until I reached the top.

The next thing I knew, I was asking the teacher if I could take the class to the end of the hallway, where they could watch the process. I never would have dreamed of being this “seen” just a few years earlier. That moment on the stairs taught me that most people are simply curious about others, just as we all are when learning about the world around us as toddlers. It never really changes. I didn’t realize that I was respected at school for simply showing up each day. I didn’t view it as a struggle. To me, it was just the way things were.

All these years later, it still is.

My college friends, work colleagues, musician friends, and others I’ve met along the way have asked me hundreds of questions. I encourage them to learn and understand. I think it removes some stigma around disability and how I live my life. This has allowed me to better cope with my disease progression, as I have the comfort of knowing that my true friends are still learning with me, walking beside me, and helping me manage limb-girdle muscular dystrophy.

I believe that my willingness to educate my friends and peers has also made me more comfortable asking for help. Most of my close friends have been with me for years, so they’re aware of my limitations and have adjusted to the progressive nature of my disease.

If you are living with a rare, chronic condition, I would love to know how you have nurtured and educated friends throughout your life. If it feels right, please let me know in the comments below.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.