Copyright 2004 Stuart News Company
Press Journal (Vero Beach, FL)
July 29, 2004 Thursday INDIAN RIVER COUNTY EDITION
SECTION: LIFESTYLES; Pg. C1
LENGTH: 371 words
HEADLINE: ALS patient driven to help other patients
BYLINE: Elliott Jones staff writer

PORT ST. LUCIE -- In the last eight years, James Burkett, 49, has been to more than 100 funerals for people along the Treasure Coast.

He isn't a mortician.

Burkett is just someone who one day expects to die as they have, of Lou Gehrig's disease.

In October 1995, doctors finally ruled out all other possibilities as to what was causing the former high school football player to slowly lose the use of his arms and legs. The only thing left was a diagnosis they don't like to start out talking about: Lou Gehrig's disease.

It is incurable. And it is fatal, usually within five years of diagnosis.

Burkett was married with three young children and a job as a power plant mechanic with Florida Power and Light Co.

Now the children are grown and living on their own, except for Stephanie, 16.

And somehow, Burkett has defied the odds. "Only by the grace of God," said Burkett, who has become a devoted volunteer with the Tampa-based group, the ALS Association, that helps patients with Lou Gehrig's disease.

He drives up and down the coast, from Brevard to Palm Beach counties, educating people with the ailment. He has set up support groups.

"I've had people die in my arms," he said. To him, his work is a quiet personal ministry. "It's been a blessing.

"The mind is still there in people with Lou Gehrig's," he said. "It's the body that doesn't work. I've given people showers and changed clothes. I've been their legs and arms as their hands claw up" from the affliction.

Burkett had to leave his FPL job. Now he is on Medicare disability. His wife, Dottie, is a preschool teacher. After being diagnosed, he had to wait five months to apply for Medicare. Then he waited more months to start getting money.

"It was unbelievable," he said.

For patients, it is also unbelievable that their muscles waste away like a melting candle, he said. "Try tying your hands behind your back for 15 minutes. Try living without hands. You can't answer the phone. You can't scratch. When a mosquito buzzes around, you can't hit it.

"Some patients are angry and bitter," he said. Most "are unique, special people. They are an inspiration to me. They tell you stories that make you feel good."