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

by | Jun 19, 2014 | 0 comments

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.  It was the first time she ever swam in open water versus a pool.  “As soon as I got in with 200 other beginners in my swim wave, it was chaos.  People were just climbing all over me and kicking and I had a complete panic attack—I really thought I would drown.  I cried and hung onto each buoy and a kayak.  When I stepped out of the water, I was last.  Last person of 800.”  It is a painful memory.   Then Joy reveals that she vowed to do it again and suffered through panic attacks during swims for a couple of years.   Seems like the behavior of a winner.

Just six years after that frightening experience, Joy, a former Pilates and spinning trainer, founded Train to Tri which trains women for participation in triathlons.  Joy is especially proud of the emotional boost for her clients. “Training really helps with self-esteem.  It is about making a commitment to be present twice a week for seven weeks.  The whole family has to buy into the idea that Mom wants to do this.  Then, not only is the Mom doing what she needs for herself, the family is behind her, putting her first.”

Not everyone who trains with Joy is a mom.  Her clients are all ages from high school into their 50’s, with varying degrees of ability.  “Our job is to motivate them to do the best they can, whether they are starting out or experienced. The goal might not be to finish the triathlon but to do the best they can.”

In 2008 following an Ironman Triathlon, which includes a 2.4 mile swim, 113 mile bike ride and 26.2 mile run, Joy, then in her mid-40’s, began having trouble with her legs.  “My legs felt very heavy, like there were weights on them.  My feet were tingling and I was very weak.” At first, doctors blamed her symptoms on herniated discs in her back.   Soon after, what Joy saw in the mirror caused her to do a double take.  “I couldn’t believe what I saw.  The back of my legs had been the muscular legs of a runner.  Then suddenly, they were skinny.  I pointed it out to my friend and she was shocked at the noticeable difference.”  Her general practitioner “was scratching his head.”  He called it odd muscle atrophy, but didn’t have an explanation.  A neurologist said she might have Charcot-Marie-Tooth (CMT), but couldn’t explain why, and simply sent Joy on her way.

Finally, a visit to the Mayo Clinic in Jacksonville, FL provided answers.  As soon as the doctor told Joy to take off her shoes, she had a diagnosis.  It was CMT.   Joy was stunned.  “I heard the doctor say: non-curable, non-treatable, progressive.  I can’t remember what else was said or what happened.”

Life is very different for Joy these days.  “I can’t run anymore. Standing or just walking is exhausting.  I kind of lumber along. And my hands ache.”   Her beloved bike rides are affected as well. “I can still pedal for a long time but with very little power.” Joy grabs every opportunity to enjoy life.  Recently, she and some friends cycled to the beach and had a picnic. They also swam in what Joy described as “the choppiest water. It was like being in a washing machine.”  She was glad to have gotten a car ride home after.  It seems like a contradiction that this kind of exercise is vital to Joy’s health because it takes an enormous toll on her.  “I am physically exhausted most of the time.  I want to do as much as I can, but I need to listen to my body and not push in a big way.”

Joy’s idea of not pushing in a big way is to participate in the 12.5 mile annual Swim Around Key West event on June 23.

Encouraging women to take care of themselves is a good fit for Joy.  When asked what she would suggest for someone who isn’t a natural athlete she said, “Get a bike.  It doesn’t matter what kind.  You are outside and can go a long distance and you have the wind in your hair.”  When you hear Joy say it, it does sound like fun.

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