The Associated Press State & Local Wire
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January 17, 2004, Saturday, BC cycle
SECTION: State and Regional
LENGTH: 935 words
HEADLINE: Former bank executive battling view of Lou Gehrig's disease
BYLINE: By PAUL NOWELL, Associated Press Writer
DATELINE: CHARLOTTE, N.C.

He can get around only with a wheelchair, is permanently hooked to a ventilator and feeding tube, and uses a computer to communicate through eye movements.

Yet former banking executive Joe Martin is publishing novels, traveling and using his decade of survival to challenge the widely held view that Lou Gehrig's disease is a death sentence.

The 64-year-old has also stirred controversy with complaints that fund-raising campaigns foramyotrophic lateral sclerosis play too heavily on images of hopelessness. Martin says Gehrig, the New York Yankees slugger who died from the disease in 1941, has been turned into an "icon of death."

Portraying the ALS patient as "a soul imprisoned in its own flesh" is an image that does not have to reflect reality, Martin said in an e-mail interview.

"ALS advocates who use 'trapped' images to raise money make it infinitely harder to break free," he wrote. "How many people refuse treatment, accepting that fate?"

ALS devastates the body, attacking the motor neurons that the brain uses to deliver messages to muscles throughout the body. As neurons fail, muscles wither from lack of use, eventually leading to full paralysis.

Speech is slurred and breathing becomes difficult. Chewing and swallowing are impaired; patients eventually must go on a feeding tube.

Though researchers have made progress in the search for drugs to treat the disease, there is no cure. The average patient survives just 27 to 43 months.

Dr. James Caress of the Wake Forest University Baptist Medical Center's ALS Clinic sees Martin and British physicist Stephen Hawking, who has lived 38 years with ALS, as men whose intellects help them survive a life that many patients find intolerable.

"Some people can live inside their head, certainly someone like Hawking does, but others don't want to live like that," he said.

Caress said there is nothing physically that sets people like Hawking and Martin apart from those who do not survive ALS - simply their willingness to live with the severe limitations the disease imposes.

"For most, it's a philosophical thing," he said. "People who are comfortable being in the role of the observer feel like they can get what they need from life in an intellectual sense.

"For others, it many not be what they want to be, even if they are able to participate in events and family life," Caress said. "They may not want to put all of this on their family."

Caress agrees with Martin that doctors should rethink how they deliver an ALS diagnosis.

"We are taught in medical school that once we mention the word 'cancer' to a patient, it's the last word they hear," Caress said. "ALS is a lot like that. Once they realize it can't be reversed, it's the last thing they hear."

"Doctors may feed into this, that if you can't move or talk, you're a burden on society and its your duty to check out," he added.

Martin is emphatic in his desire not to "check out." Since his diagnosis, he has written a novel and "On Any Given Day," a book about living with his disease. He's now at work on another novel.

In a two-week span last fall, Martin attended a funeral in South Carolina, a wedding in Asheville and an Indian Unity conference in Greensboro. He concluded his trip by coming home to introduce author John Grisham to a sold-out house at Charlotte's Novello Festival of Reading.

"It was incredible," said wife Joan Martin, recalling the standing ovation her husband received. "He thought John Grisham was standing behind him, but 2,000 people were clapping for him and they kept clapping."

"It seems like ALS can't do anything else to him," she added. "We just had our ninth summer together since he was diagnosed and it was absolutely our best summer ever."

Jerry Dawson, executive director of the Carolinas ALS Association, takes issue with Martin's contention that ALS advocates do not convey hope to patients. Dawson said his group's primary mission is helping people live with ALS.

"A person can live a productive life - there are many people who are a testament to that - and we want to make sure every option is available to all people living with ALS," he said.

Martin, the younger brother of former Gov. Jim Martin and a former top aide to Bank of America Corp. chairman Hugh McColl Jr., has had the financial resources to get the best medical care and technology available.

In return, he and his wife have tried to make more of those opportunities available to other patients. Joe Martin helped raise more than $3 million to build the Carolinas Neuromuscular/ALS Center in Charlotte. He also raised money to endow a program at the center to pay for patient care and research.

Martin compares himself to actor Christopher Reeve, who was paralyzed from the neck down in a 1995 fall from a horse but has said he is a determined to walk again.

"I survived a 6-year slow-motion (and much tougher) version of the same fall," he wrote. "We have the same results. We are both beyond the 'if' of survival. We are into the 'how' of life."

Though he remains almost entirely paralyzed, Martin recently bought himself an exercise bike.

"My grandsons call it a hamster wheel," he said. "The bike does all the work, but it keeps my ankles, knees, hips, shoulders, and elbows loose and helps circulation, and it makes my whole body feel like it's doing something not as exhilarating as running used to be, but closer than I thought possible."