For CMTers Like Me, It’s Important to ‘Just Keep Moving’

“Just keep moving.” 

For Steve O’Donnell, a Charcot-Marie-Tooth Association board member and founder of the nonprofit Therapies for Inherited Neuropathies, those are words to live by. He calls them his life’s slogan.

The slogan helps him self-motivate to spread awareness of CMT and to raise money for CMT research. It’s guided him through organizing fundraising events such as an annual swim across the Chesapeake Bay, an event that’s evolved through the years and now is known as the “Funathlon.”

And it’s been a mantra for how O’Donnell approaches his life as a CMTer. He exercises regularly, exploring the limits of what his CMT-afflicted body can do.

I’ve also found that slogan to be a key takeaway from O’Donnell’s latest project, a series of exercise videos he produced with his friend Mike Studer, who’s a physical therapist and neurologic clinical specialist. And it’s what I’ve tried to keep in mind as I try to incorporate some of the exercises from the video series into my home exercise routine. I’ve found the routine important to have while my local gym remains closed due to the COVID-19 pandemic.

O’Donnell and Studer’s seven-part video series breaks down the core attributes of fitness, including balance, endurance, flexibility, and strength. It’s not the kind of workout video you exercise to while watching it, as Studer demonstrates specific stretches and exercises he and O’Donnell have found useful for CMTers of every ability and flexibility level.

Although fitness is important for everyone, O’Donnell believes it’s especially important for those affected by neuropathies such as CMT.

“While we were trying to find treatments and cures for CMT, there was not a lot being done [about] exercise,” O’Donnell said in a phone interview on May 16. “I wanted to bring to people … something that they can work on to make them feel better both physically and mentally.”

Sticking to an exercise regimen like those shown in the video series has allowed O’Donnell to do more and to stay active longer than he previously thought possible.

According to O’Donnell, Studer convinced him to try walking on a treadmill without holding the safety rails, which he didn’t think he could do. Now he walks on it sideways and backward as part of his exercise routine. He credits staying active to the fact that he feels a decade younger.

I don’t think I can say the same. 

I can feel the symptoms of CMT progressing, and longtime friends have noticed it, too.

Perhaps if I could find the motivation to follow a home workout routine and incorporate exercises from the video series, I could at least give my body a fighting chance to stave off some of the increasing symptoms of CMT. O’Donnell certainly thinks it could help CMTers like me.

“What I try to instill in people is this idea that you don’t want to give anything back, because if you lose [capacity] to CMT, it’s really hard to get that back,” O’Donnell said. “So if you continue to exercise, if you get into a regimen of doing it, what I like to believe is that you’ll start to lose [ability and strength] slower.”

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