Posted on Wed, Jul. 23, 2003
© 2003 Charlotte Observer and wire service sources. All Rights Reserved.
DAVID PERLMUTT
Staff Writer

He can't talk, he can't walk, he can't move a single body part except for a finger, eyes and a few facial muscles, but Joe Martin is on yet another crusade.

Nine years after he was diagnosed with ALS, amyotrophic lateral sclerosis, the former bank executive and now novelist wants to change the thinking about the disease that paralyzed him and, according to that doomsday thinking, should have killed him.

These days, he discusses his illness in the past tense. Martin, 63, is living proof, he says, that people can live -- and don't have to die -- with ALS.

"For any practical purpose, I do not have ALS. I had it," Martin responded by e-mail. "... My survival is just a fact, almost a foregone conclusion."

Soon, he and wife Joan plan to post a new Web site that takes "positive" messages to ALS patients -- despite doctors telling them they will die within two to five years.

"Joe wants people to get information that is positive, instead of the sad news," Joan Martin said. "It will talk about living, never about dying. Joe tells people diagnosed with ALS, `If you have a doctor who talks about dying, get another doctor.' "

Martin also plans to go after investment money for technology he says makes survival an option -- for example, the ventilator, a little larger than a laptop computer, that helps him breathe and a feeding tube that prevents him from choking on food. Both have given him renewed hope that he will live to be an old man.

"I knew all along we needed to change the way the world sees ALS, but to what?" he wrote. "If the world concluded that only someone with my money and connections could survive, people with ALS would be more depressed than ever."

Martin, a force in the past for better race relations, is the brother of former N.C. Gov. Jim Martin and a retired bank executive. The ALS Association, he says, argues that many patients don't have his means and therefore "we will give them only palliative care, easing them toward death, then use them to raise money.

"My passion is to save people from that deathtrap."

Jerry Dawson, executive director of the Carolinas ALS Association, said the group's primary mission is: "To help people live with ALS and to leave no stone unturned in the search for a cure."

It is fighting ALS through research and lobbying Congress for research money, he said.

Martin was diagnosed in October 1994. The disease kills nerves controlling arms, legs and muscles used to breathe, swallow and talk. It has the highest mortality rate among degenerative neurological disorders.

In 1941, ALS killed baseball legend Lou Gehrig, whose name is tied to the disease. Patients generally die of respiratory failure.

Martin believes ALS can do nothing else to him, since the ventilator helps him breathe.

"He can't fall. He can't choke. He won't starve. And with a ventilator, he can't stop breathing," Joan Martin said. " ... His eyes are never affected by ALS. So nothing else can go wrong with him. "

Martin sees three barriers to survival:

? Using Lou Gehrig as an icon of death: "In the name of a true American idol, `advocates' use false claims with impunity...," he wrote in a recent letter to U.S. Rep. Mike Bilirakis, R-Fla., who chairs a House health subcommittee. "How many people refuse treatment, accepting that fate?"

? The ALS Association's "commitment to death as the only remedy": "My crusade is to put the ALS Association on a different track or put them out of business. They or somebody else can raise more money by telling the truth, without sacrificing lives." Dawson said the association "regards its work with people with ALS ... to be its most vital mission."

? Technology: "Technology makes survival possible but not attractive. Our Web site will encourage such things as ventilators ... and headbands that transform brain waves into words." The average life expectancy after diagnosis, he said, predates new therapies and "assistive equipment."

Though silenced, Martin has become a loud advocate for ALS patients getting the treatment and equipment they need to prolong life. In 1998, he, his brother and friends raised more than $3 million to build the Carolinas Neuromuscular/ALS Center at Carolinas Medical Center.

Dr. Jeffrey Rosenfeld, the center's director and CMC's chief of neurology, agrees that if Martin's body doesn't create a new problem -- such as an infection -- ALS can do little more to him.

The center, Rosenfeld said, has adopted a philosophy of aggressively treating symptoms before they become debilitating.. Martin, he added, bought into that.

"I agree with Joe that if you're aggressive with the management of the disease, you can most definitely change the course of the disease," he said. "... Joe has opted for the benefits of every aggressive intervention available."

Those interventions are available to everyone treated at the Charlotte center, which pays the cost if the patient can't. Rosenfeld said: "At the center, the patients and needs come first. The financial obligations come second."

Martin is helped by a rare determination and his support system at home, Rosenfeld said.

He's shown he can live with ALS. A year ago, he and Joan traveled overseas, and in December to New York, where they saw plays. He has written two books, one about living with the illness, the other a novel. He's writing a second novel; a computer allows him to type e-mails or faxes by focusing his eyes on letters.

"What Joe wants to show ... you can go to the movies, you can see your grandchildren," his wife said. "You can live with ALS."

In the past, Martin has crusaded for causes such as better schools and race relations. He introduced "Race Day," challenging Charlotteans to invite a person of a different race to lunch and to live tolerantly.

Martin knows there is still much to be done, but for now he is focusing on ALS.

Far from declaring victory, he became discouraged and upset last week by the ALS death of friend Glenn Mason of Charlotte.

"Glenn faced ALS with courage and thigh-slapping humor. He was important to changing attitudes about ALS and his death reminds us we have a long way to go.

"...I will accept victory when we make survival a viable and generally available option."