Gulf War veteran Michael Gaboriault uses a wheelchair at his home in Coventry, Vt.
		By Karen Pike for USA TODAY

Donnelly became committed to getting his story out. His forums ranged from Larry King Live to Falcon's Cry, a book he published in late 1998. He became perhaps the best-known ALS patient since British physicist Stephen Hawking, who has defied all odds by living with the disease for 40 years.

ALS, or amyotrophic lateral sclerosis, is more commonly called Lou Gehrig's disease for the New York Yankees baseball legend who died of it in 1941 at age 37.

In December 2001, Donnelly and preliminary research findings persuaded Veterans Affairs Secretary Anthony Principi that ALS was a service-connected disease in Gulf War veterans. The VA began providing benefits to those affected.

It was a controversial decision because the research linking Gulf War service to an increased risk of ALS had never received the scientific world's imprimatur: publication in a peer-reviewed journal.

Until now.

Nearly two years after Principi's decision and more than seven years after Donnelly's diagnosis, two separate studies today in the journal Neurology conclude that Gulf War veterans are twice as likely to develop ALS as the general public. The reasons are not clear. And although some scientists still question the Gulf War-ALS link, others suspect that veterans of that conflict also might be at a higher risk for other neurological disorders, such as multiple sclerosis or Parkinson's disease.

Robert Haley, author of one of the studies, calls Neurology editor Robert Griggs an "academic hero" for publishing the research. After he submitted his study to the journal two years ago, "it got blistering criticism from neurologists," says Haley, an epidemiologist and internist at the University of Texas Southwestern Medical Center at Dallas. "But then he allowed me to respond to the critics, and then he put it out for review again."

After Haley conducted his research, which was financed by the Perot Foundation, the Department of Defense and the VA paid for another study, which also appears in Neurology.

Fortunately, ALS is so rare that few veterans of the first Gulf War will ever develop it. In the general U.S. population, an average of one or two people per 100,000 are diagnosed each year.

Nearly 700,000 Americans served in Saudi Arabia, Kuwait, the United Arab Emirates, Turkey or on the Red Sea during the Gulf War, which roughly spanned the last half of 1990 and the first half of 1991.For its study, the VA identified 40 veterans diagnosed with ALS after serving in the Persian Gulf. Since the study ended in 2001, "I do know additional cases have been found," says lead author Ronnie Horner, a former VA researcher who is now an epidemiologist at the National Institute of Neurological Disorders and Stroke.

Numbers could increase

Haley, who collected cases diagnosed from 1991 through 1998 from military registries and as a result of a publicity campaign, found 20 Gulf War veterans, including Donnelly, who pushed for the study, with ALS. The number of diagnoses increased each year, a finding that "raises the possibility of an even larger ALS problem in future years in the Gulf War veteran population," Haley writes.

Although the two studies reached similar conclusions, an accompanying editorial expresses skepticism. "While a two-fold increase in risk may seem impressive, one needs to realize that this is based upon just a small number of cases," wrote Michael Rose of King's College Hospital in London. But Haley says that, if anything, the studies undercounted the number of veterans with ALS.

Donnelly, of South Windsor, Conn., has lived with the disease for more than seven years. He isn't giving interviews about the newly published findings. Except for his eyes, he is paralyzed.

He can spell out words by blinking when a family member or caregiver says a letter. Thanks to adaptive technology, he can communicate via e-mail, but "it takes him a long, long time to get through questions," says Sue, his wife. She is polite on the phone, but she has more important things to consider than the articles. "I'm so caught up in my day-to-day stuff," the mother of two says, "I can't even be concerned about it."

ALS leaves victims' minds intact while gradually robbing them of voluntary muscle control and movement. According to The ALS Association, as many as 30,000 Americans may have ALS. The disease usually kills within two to five years. As Horner says, "It's a nightmare disease. Everybody has theirs. This is mine."

In the USA, the average age at diagnosis is 55. But for unknown reasons, more than half of the veterans in Horner's study were younger than 35 when they learned that they had ALS. And 17 of the 20 veterans in Haley's study were younger than 45 when diagnosed. Their youth, not their numbers, was what first attracted the attention of scientists.

Horner's paper mentions an incubation period of perhaps a decade, but no one really knows for sure, says Mary Lyon, vice president of patient-care services for The ALS Association, based in Calabasas Hills, Calif. When ALS takes hold, healthy nerves assume the role of affected nerves. Eventually, though, the body runs out of spare nerves, and symptoms arise.

"By the time a person would develop weakness in an arm or a leg or some difficulty speaking or swallowing, up to 50% of the motor nerves in that affected region could either be dying or dead," Lyon says.

For Gulf War veteran Michael Gaboriault, it began with weakness and clumsiness in his hands. As an Army aircraft mechanic, he had been in and out of the Gulf region several times from 1989 to 1991. After he left the Army, he became a log yard supervisor for a Georgia Pacific plywood plant in New Hampshire.

"I learned that I probably had ALS May 4, 1997, my 37th birthday," Gaboriault writes in an e-mail. (His speech has become slurred, but his wife, Julie, can understand him.) "Never heard of it by ALS. I had heard the term Lou Gehrig's disease, but I had no idea of what it was."

He continued working for 3½ months after his diagnosis, until he felt it was no longer safe to work around heavy equipment.

At his home in Coventry, Vt., Gaboriault spends most of his time online, doing research and moderating discussions about hunting and the Gulf War. By moving his head, he can maneuver a special computer mouse. Although he is a quadriplegic, adaptive equipment and help from his four brothers and friends enable him to continue hunting. He fires a gun with a "sip switch" that he operates with his mouth.

"I can hit a quarter at 100 yards. No problem," Gaboriault writes. "Last fall I shot a 278-pound wild boar at 178 yards and walking with one shot behind the ear."

Risk factors: Age and gender

Scientists are certain of only two ALS risk factors: age, and, before age 50 or so, being a man. After menopause, women begin to catch up with men, leading researchers to wonder whether hormones play a role. Heredity appears to be a factor in relatively few cases.

Perhaps 5% to 10% of ALS patients have had a relative with the disease. Researchers have identified the gene responsible for about a fifth of these familial cases. The ALS Association is sponsoring a $1.5 million study to identify other genes that might play a role.

Researchers hope to build on the new studies and identify environmental factors, ranging from biochemical weapons to food, that might play a role in the development of ALS, both in veterans and in the civilian population.

Horner is reluctant to hazard a guess of why Gulf War veterans are more likely to be diagnosed with ALS. Because so little is known about what causes the disease, "it's hard for me to say, 'That looks reasonable; that doesn't look reasonable,' " he says. "We need to give full consideration to all possible environmental exposures."

Horner says his research team interviewed affected veterans about foods they had eaten and their activities during the war.

Previous research led Haley to conclude that exposure to sarin gas and related pesticides led to the constellation of mainly neurological symptoms known as Gulf War syndrome, another medical mystery from that conflict. Other studies have suggested that those same chemicals play a role in the development of ALS in the civilian population, he says.

Haley suspects that something in the affected veterans' genetic makeup predisposed them to develop ALS when exposed to such chemicals. He is looking for more Gulf War veterans with ALS in an attempt to answer that question.

That makes sense to Gaboriault, who says he spent four days in an Army field hospital in Kuwait after becoming severely ill right after the demolition of Iraqi chemical munitions bunkers.

Two-thirds of the veterans in Haley's study, including Connelly and Gaboriault, came down with symptoms of Gulf War syndrome during or right after the war. That's a higher proportion than in Gulf War veterans overall.

"I do think that is a potentially important finding," says neurologist Beatrice Golomb of the University of California-San Diego. She and Haley serve on the VA's Research Advisory Committee on Gulf War Veterans' Illnesses, set up by Congress in 1998 and appointed by Principi in January 2002.

"It may prove to be the case that ALS is part of toxic changes induced by a common single or set of exposures that Gulf War veterans experienced," Golomb says. In veterans who did not first have Gulf War syndrome, she speculates, ALS may be unrelated to their service in the gulf.

At the urging of the advisory committee, Principi says he is making $20 million available for research into Gulf War illnesses. This past summer, the VA established a registry of all living veterans with ALS, not just those who served in the Gulf War. (The registry's phone number: 1-877-342-5257).

Horner, who's on the board of the registry, isn't sure whether a similar elevation of ALS risk eventually will be seen in those who fought in Iraq this year. If the Gulf War cases were caused by an environmental exposure unique to that conflict, such as sarin gas, then veterans of other wars would have the same ALS risk as the general population. But if exposures to multiple chemicals over a short period triggered ALS in the Persian Gulf War veterans, then those who served in Iraq might also be an increased risk, Horner says.

Stephen Robinson, executive director of the National Gulf War Resource Center in Silver Spring, Md., says he does not expect to see an increased risk of the disease in veterans of other conflicts. Robinson served with the 1st/10th Special Forces, which helped to repatriate the Kurds immediately after the Persian Gulf War.

Iraq 'different kind of war'

In Iraq this year, says Robinson, who is also a member of the VA advisory committee, "the combat was up close and personal." Unlike in the Persian Gulf, he adds, no chemical weapons have been found in Iraq, let alone blown up. "It's a different kind of war."

Meanwhile, Robinson says, his organization is pressuring the VA for similar research into multiple sclerosis. "In my group alone, we have over 70 Gulf War veterans who have MS," he says. "We formed a group called MS Vets. We have told the VA that we think there is a statistical significance in veterans."

Golomb suspects that Persian Gulf War veterans also might have an increased risk of developing Parkinson's disease, another neurological ailment that has been linked to pesticide exposure in the civilian population.

Already, Golomb says, she has treated Gulf War veterans diagnosed with Parkinson's in their 40s. Brain scans of healthy veterans show abnormalities that, in animals at least, precede the development of the disease. In the general population, the average age at diagnosis is 60.

No matter what additional research shows, Jacksonville, Fla., resident Jackie Simpkins knows that her husband, Charlie, 52, a veteran who succumbed to ALS in July, died a Gulf War hero.

"Because he died 12, 13 years after the war, people forget that's what he was."