Living with CMT, loving life

LAFAYETTE, Ind. (WLFI) - Bob Sharp knows firsthand how the MDA benefits those suffering from muscular dystrophy and other diseases.

The 2009 Muscular Dystrophy Association (MDA) Telethon raised more than $60 million in the fight against neuromuscular diseases. Organizers are no doubt hoping for more in 2010, all in the name of "Helping Jerry's Kids," a tagline which references MDA National Chairman Jerry Lewis.

Though Sharp is 70 years old and recently celebrated his 50th wedding anniversary, he still considers himself one of "Jerry's Kids."

"I was just a little slow, late in life getting to him, or his getting to me,” said Sharp. “However you want to look at it."

Sharp has CMT, or Charcot-Marie-Tooth disease. The disease is one of several aside from muscular dystophy for which the MDA offers support. Sharp has had the disease his entire life, but he was not diagnosed until about 20 years ago. Doctors always told him he had high arches.

"My feet would be tired after I took my paper route, but that was just the way it was," said Sharp.

Sharp said even though it took 50 years to find what the problem was, he is glad doctors found it.

“Now I know why those things happened, but also why the things that were tried did not work for a long time," said Sharp.

Inserts for his shoes helped in the beginning. Then Sharp tried boot shoes. Now he wears leg braces, maintained by the MDA. But Sharp said the association's research is what means the most to him.

"CMT is a condition that does not get better. There is no cure for it. It's hereditary; you got it and you have got it. They are doing research on it. They are looking at ways to eliminate that, but hopefully my great-grandchildren won't have to worry about CMT," said Sharp.

Despite having a neuromuscular disease, Sharp has a positive outlook on life. He is retired, but still works part-time. He can not play golf anymore, but he is still active. Sharp said it has been easy for him to see the glass as half full.

"Because I have something that is progressing at a slower rate than many other people,” Sharp said. “I have something that is not near as debilitating as many of the other neuromuscular-type conditions. So, in a way, it just reinforces what I have thought about. Dang, I am lucky.