Hyde Park councilman learns to live with muscular dystrophy

By Katy Jessen

December 13, 2004 | HYDE PARK -- The life of City Councilman James Skidmore drastically changed 10 years ago when he was diagnosed with Facioscapulohumeral Muscular Dystrophy (FSHD).

The term muscular dystrophy means slowly progressive muscle degeneration, with increasing weakness and wasting (loss of bulk) of muscles. In FSHD, weakness first and most seriously affects the face, shoulders and upper arms, but the disease usually also causes weakness in other muscles. The onset of FSHD usually occurs around age 20, but some patients say they can always remember not being able to throw a ball, whistle or blow up a balloon. Many don't realize anything is wrong until they begin to have weakness in their shoulders and legs.

Even though Skidmore was not diagnosed until he was 37 years old, he said he can never remember being able to throw a ball. He said he was never able to reach his arms above his shoulders, but he said it never really had an effect on him, he just learned to play other sports.

Skidmore said one of the hardest things he has to deal with is guilt. He worked as a pharmacist while his wife stayed home with their children. He had to quit his job because he was too weak and he was constantly in pain. His wife now works and he stays home. He said he worries about the 50-50 chance of his children getting the hereditary disease. He said his children are just young, at the age of marriage, and he said life insurance is a huge thing, something his kids won't be able to qualify for if they are diagnosed with Muscular Dystrophy.

Tests can be given said Skidmore to determine if his children have it, but they choose to forgo the test, because of the increase or impossibility of insurance. He said if they don't know, they are being honest by not telling the insurance agencies about it.

Skidmore said he is covered with insurance through the Muscular Dystrophy Association (MDA). MDA is a voluntary health agency -- a dedicated partnership between scientists and concerned citizens aimed at conquering neuromuscular diseases that affect more than a million Americans. MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and community services, and far-reaching professional and public health education.

"When the firemen come around with their boots to support MDA, I throw my buck in," he said.

He said it is great because insurance covers his electric wheelchair and doctors, but it doesn't cover transportation. Skidmore does have a special 1986 van to get him from point A to point B. Another mode of transportation he takes is the LTD bus.

"The bus system is great." said Skidmore, "It takes me wherever I need to go, wheelchair and everything."

Skidmore said FSHD has been a huge adjustment for him, not only is he dependent on others, but he is dependent on a wheelchair and a cane. He said his muscles are so weak that sometimes he falls down. He said as a big man with no upper body strength it's hard to pull himself up.

"It really is like I've fallen and I can't get up!"

Skidmore also said that it seems that whenever his disease seems to plateau, he gets used to the stage he is on, and then it takes a dive. He said it is hard because there is no cure, or at least nothing proven. The only drugs offered are painkillers, something he said he will never take, at least not yet.

He said there are many support groups with adults suffering with Muscular Dystrophy, but he said they are a bunch of whiners who complain they aren't getting enough support from MDA.

"MDA should focus more on the kids, not the adults. Give the kids a chance," said Skidmore. "I've lived my life, they're just young."

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