Coaching Athletes with Charcot-Marie-Tooth

by | Apr 17, 2012 | 1 comment

Morgan Johnson doesn’t have Charcot-Marie-Tooth, but she is quickly learning everything she can about it. Born and raised near the coast in Galveston, Texas, Morgan, 26, has been a competitive runner and swimmer since she was little. Four years ago, she began participating in triathlons. In 2009, as an undergrad at the University of North Texas, Morgan and her partner, Sean Thompson started a Youth Triathlon Team for 7-14 year olds. Known as the North TX Tri Team, they have remained together and still compete.

Following graduation Morgan joined Playtri Performance Center in Dallas as its first ever Developmental Coach. Playtri is a professional triathlon organization that offers a comprehensive “whole life” approach aimed to improve overall health and fitness. This approach, plus Morgan’s coaching philosophy to “use the available research and science, but to remain flexible and remember that each athlete is an individual with individual goals,” made her the perfect choice as a coach for athlete Joyce Kelly.

Joyce, a member of Team CMT, approached Morgan about a year ago to be her coach. “Joyce didn’t say she had CMT,” Morgan remembers. “She might have thought I already knew. Her diagnosis took me by surprise.” Morgan had never heard of CMT. While researching the disease, Morgan contacted Dr. Robert Chetlin of West Virginia University School of Medicine and asked for help devising a plan for Joyce. “Dr. Chetlin helped me understand the disease better, the effects of the disease on skeletal muscles and the effect of exercise on CMT. He warned us away from exercises over-emphasizing balance and proprioception because they could result in injury due to Joyce’s CMT.”

With Dr. Chetlin’s guidance, Morgan was able to devise a routine which included exercises to strengthen Joyce’s ability to balance. Thanks to proper training and, as Morgan puts it, “being stubborn,” Joyce is now able to go up and down stairs and stand on one foot.

A long time runner and biker, last year Joyce added swimming when she began participating in triathlons. Morgan credits Joyce with “opening my eyes to a whole demographic that needs help with training.” Morgan joined Team CMT to support Joyce and plans to raise awareness about the disease. “A lot of progress can be made through awareness,” explains Morgan. Through their connection, Joyce also sparked a passion for Morgan and her friend Darrick Walls to create the Para Triathlon Committee, whose goal is to work with experienced para coaches and athletes and make resources available to challenged athletes.

Morgan continues to research and study the intricacies of youth and developmental coaching, including those affected by CMT. She’s glad to have Dr. Chetlin as a resource. “I really value Dr. Chetlin’s opinion. The most important thing I think he’s told me,” she said, “is there is no such thing as one plan that will work for everyone.” It is good advice which supports Morgan’s philosophy of “remembering that each athlete is an individual with individual goals.”

Joyce continues checking in with her favorite coach while training for numerous events this year.

Learn more on this topic

Related Blog Posts

March 29, 2015: OK…Now What?

March 29, 2015: OK…Now What?

January 15th 2015. That was the day I got my official invite to the race, that was the day of no turning back, that was the day I realized I was going to riding my bike a lot this spring and summer, a whole lot!

Personal Stories: Triathlete, Trainer with Charcot-Marie-Tooth

Personal Stories: Triathlete, Trainer with Charcot-Marie-Tooth

In spite of high foot arches and trouble with balance, Joy von Werder of Winter Springs, FL has always been a runner and cyclist. She was also eager to participate in a triathlon. “The training and racing aspects really appeal to me,” she explained. There was one huge problem though. Joy didn’t know how to swim. “So there I was, 39 years old, taking swimming lessons from the boy who gave my little kids lessons,” Joy laughs, but her voice changes quickly as she describes her first race.

Member Alyson O’Connor Won’t Let Her CMT Stop Her!

Allyson O’Connor won’t let CMT get her down. She was unofficially diagnosed at the age of 10. Her Dad had the same symptoms, but at the time genetic tests were not available. Her diagnosis was based on an EMG. After having her two children, now age 8 and 6, she decided it was important to determine if she definitely had CMT.

Join the conversation

Leave a Comment

1 Comment

  1. Chris

    Proud to have you on Team CMT!


Submit a Comment

Your email address will not be published. Required fields are marked *


Join for notifications on events, campaigns, & news