12/24/2009: Palm Beach, FL—Swim Coach with CMT Teaches "Stress-less" SwimmingWhen swimming coach Deni Gillespie was diagnosed with Charcot-Marie-Tooth disease in 1992, she also found out that she'd had it her whole life.
Named for the French and British scientists who discovered it, the progressive nerve and muscle disorder is caused by a genetic defect in the peripheral nerves.
The Jensen Beach resident, now 56, also found out that she'd passed it on to her son Casey, now 21 and a junior at the University of Central Florida. He hasn't yet experienced the same amount of pain and muscle weakness and atrophy as his mother. But the two share a sympathetic bond.
"He actually feels worse for me," Gillespie said. "He said, 'I feel really bad that you didn't know what was wrong when you were younger. You must've been wondering why you couldn't do certain things.'"
The disease has impacted more than just Gillespie's swimming ability.
The protective pads at the bottom of her feet are worn down, causing her to use a motorized wheelchair and wear special shoes. The move to South Florida from New Jersey 12 years ago has helped, because cold made her symptoms worse.
Gillespie says that her condition worsening has caused her to lose jobs, and be passed over for others, despite a stellar coaching record she started at age 20.
"That's how I put myself through school at Rutgers," the New Jersey native said.
She has been both a college assistant coach and a high school head coach. She also started the Swim Strong Aquatic Club with Casey four years ago.
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