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ALS patient 'keeps on keepin' on'
Saturday, September 15, 2007By STEVE DOYLETimes Staff Writer steve.doyle@htimes.com


Ed West, wife among participants in benefit walk at Alabama A&M

ATHENS - Almost everyone with Lou Gehrig's disease can remember the precise moment their muscles started to wither.

Ed West's moment came in October 2005, when he didn't have the strength to work a pair of fingernail clippers. By that Christmas, the fast-moving neuromuscular disorder was in his throat, and West began stumbling over words he had been saying all his life.


"If I slurred a word," he said, "I would fake it and say something else instead."

Because his hands were so weak, West's family doctor suspected carpal tunnel syndrome. The truth was much, much worse: The easygoing electrical engineer at TVA's Browns Ferry Nuclear Plant had amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig's disease.

"When the neurologist said 'Lou Gehrig's,' I knew," said West, his speech now badly slurred and hard to understand. "I knew there was no cure, and it was fatal."

West, 61, understands that the odds are stacked against him. ALS is such an efficient killer that it is often referred to as a death sentence; most patients are lucky if they live five years from diagnosis.

Already, West's leg muscles are giving out. He recently fell out of his pickup truck and now needs a wheelchair to get around.

But he and his wife, Mary Ann, are trying to make the best of his bad break. They're taking road trips together, including to the Grand Canyon and Hilton Head Island, S.C., and spending as much time as possible with their three grown sons and 10 grandchildren.

"What else can we do?" Mary Ann said Tuesday at the couple's home on New Cut Road. "In life, you just have to keep on keepin' on."

Next Saturday, the Wests will put their traveling on hold to attend the third annual Walk to D'Feet ALS at Alabama A&M University's Louis Crews Stadium. Last year's event raised more than $100,000 for ALS patient services and research.

"I challenge all my Browns Ferry co-workers and my Athens neighbors to support the walk," said West, who retired from TVA contractor Bechtel Power Corp. about a year ago when he could no longer lift his left arm to type.

Huntsville's ALS Association chapter, which is sponsoring Saturday's walk, says there are at least two Lou Gehrig's patients in Limestone County and 12 in Madison County. Nationally, the muscle-paralyzing disease strikes about seven people per 100,000 population.

West does not have a family history of ALS, and he wonders if something in the environment caused him to get sick.

Studies have shown military veterans - West was in an Air National Guard rapid-deployment unit during the first Gulf War - are more likely than non-veterans to be diagnosed with ALS. In 2003, the U.S. Department of Veterans Affairs established a national registry to track veterans living with Lou Gehrig's disease and to look for answers.

Although he grew up near Tennessee's Oak Ridge National Laboratory and spent 16 years working around nuclear reactors at TVA's Browns Ferry plant south of Athens, West does not think radiation exposure caused his illness.

"You can go to that plant and eat off the floor it's so clean," he said.

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