For Steve O’Donnell, founder of 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 Charcot Marie Tooth disease and to raise money for CMT research. It’s guided him through organizing fundraising events such as a swim across the Chesapeake Bay, known as the “Funathlon” and a golfing event called the “TINCUP”.
It’s also 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.
That slogan is also a key takeaway from O’Donnell’s latest project, the development of a second series of exercise videos he produced with his friend Mike Studer, who’s a physical therapist and neurologic clinical specialist.
O’Donnell and Studer’s first set of videos is a seven-part video series that breaks down the core attributes of fitness, including balance, endurance, flexibility, and strength. In this series, Studer demonstrates specific stretches and exercises he and O’Donnell have found useful for CMTers of every ability and flexibility level.
The second series is a collection of the top exercises that can be performed at home without equipment or the assistance of another person, takes only moments to setup and complete in total and addresses all the major attributes of fitness. You can watch the video in full or you can watch each of the attributes (strength, static standing balance, flexibility/ range of motion, general functional mobility, dynamic standing balance, and walking balance) individually in little, as we at TIN like to call it, “snacks”.
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 “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 both 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.
We at TIN want our fellow CMTers to be able to say the same!
Do you feel the symptoms of CMT progressing? Have longtime friends noticed it, too?
C’mon, follow our home workout routine and incorporate exercises from our videos into your everyday life. What do you have to lose? Give your body a fighting chance to stave off some of the increasing symptoms of CMT like Steve O’Donnell.
“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.”
Check out our video series at Therapies and Treatments | Therapies for Inherited Neuropathies