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How I Exercise at Home with Myotonic Dystrophy

The author finds online chair yoga classes surprisingly satisfying.

Man doing chair yoga

For years I attended a yoga class at a local gym, but when my myotonic dystrophy progressed, I could no longer keep up. I eventually found an adaptive fitness studio operated by Bay Area Outreach and Recreation Programs (BORP), a nonprofit organization that creates exercise and recreational programs for people with physical and/or developmental disabilities. I appreciated the empathetic instructors and diversity of students but loathed the 30-minute drive to get there.

Just a few months ago I inquired at our city’s senior center and discovered two classes perfect for me: chair yoga and balance and mobility. I missed my friends from the other gym, but soon found a new social group and fell into a nice exercise groove.

And then…COVID-19 appeared. The Tuesday following a trip to Santa Cruz for my birthday, which my spouse and I aborted due to fears of the virus, I had my balance class, which is taught by a retired engineer with a passion for the biomechanics of exercise. I was desperate to go, but my fear kept me home. Perhaps I’d be less afraid the following week.

As we all know, California shut down and eventually most states followed. No one was going anywhere to exercise beyond a walk or run around the neighborhood.

My email inbox gradually filled with messages about online streaming classes. On Facebook I posted on the Accessible Yoga Community group page looking for accessible yoga classes online. I put together a list of resources to share with my myotonic dystrophy patient community.

The first online exercise class I “attended” was by my chair yoga teacher on YouTube Live. It was great to see her, and the pace mirrored the pace of her in-person class. But she couldn’t see me or the other participants. We couldn’t ask questions during the class, so, it wasn’t optimal.

Each day when the weather allowed, my spouse and I took a 30- to 60-minute stroll through the neighborhood. Maintaining a six-foot distance from other pedestrians was sometimes challenging especially anyone with baby strollers or walking dogs. Still, it was good to be outside, soak in the warm air and see the spring flowers and patches of green in our suburban landscape. Taking a walk just after breakfast helped me start the day with a positive attitude.

Over the years I’ve amassed dozens of exercise DVDs to use at the support groups I’ve facilitated. My spouse and I dragged them out and have been doing 20-minute yoga routines, chair dances, or tai chi workouts every afternoon, which helps keep the blues and boredom at bay.

And now that BORP is streaming exercise classes on Zoom, I’m in heaven. Being able to see everyone’s face, as well as the instructor’s, almost captures the in-person experience I’ve been craving. I’m surprised by how satisfying it is. Seeing 25 little boxes of faces on my desktop is a reasonable sense of community in this trying time.

Now I have a new exercise routine to help structure my days. I’ve even re-connected with the women from the gym I used to belong to. We’re gathering together for a weekly lunch…on Zoom, of course.


Leslie Krongold, EdD, lives in Alameda, CA, where she leads support group meetings for the Myotonic Dystrophy FoundationShe also writes a blog and produces a podcast series called Glass Half Full.

Read More:

COVID-19 (Coronavirus) and Neurologic Disease Resource Center