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Challenging traditional perceptions of ALS

/ Source: The Associated Press

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

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

The 64-year-old has also stirred controversy with complaints that fund-raising campaigns for amyotrophic 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.”

“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?”

Progress, but still no cure

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.

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.

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.”

Rethinking how ALS diagnosis is delivered

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 it’s 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 the disease.

“A person can live a productive life — there are many people who are a testament to that,” he said.

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.

“We are both beyond the ’if’ of survival. We are into the ’how’ of life,” he wrote.