More veterans suffer from ALS, but VA moves to help
By MARTHA QUILLIN | The News & Observer (Raleigh, N.C.) | Published: March 12, 2014
REIDSVILLE, N.C. — Thomas Corbett may never know what — if anything — from his five years as a heavy-equipment mechanic in the Marine Corps brought on the disease that likely will steal from him the use of nearly every one of his muscles and, sometime in the next several years, his very breath.
Since he was diagnosed in 2012 with amyotrophic lateral sclerosis, known as Lou Gehrig’s disease, Corbett, 50, said he has wondered: “Was it some of those shots I took when I was going in and out of the country? Was it something in the water at Camp Lejeune? Was there something on some of those old ships I was on?”
In fact, no one knows why U.S. military veterans are twice as likely to develop ALS than the general population, or why those who deployed during the Gulf War in 1990-91 may be twice as likely to get the disease as other troops. Although it’s still a rare illness, affecting about 30,000 people across the country, it is so devastating to its victims and their families that the Departments of Defense and Veterans Affairs have made a mission out of trying to reduce their suffering.
“I tell people there are two different worlds for people with ALS,” said Suzanne Gilroy, senior social work manager for the North Carolina chapter of the ALS Association, the national not-for-profit group dedicated to fighting the disease and helping patients cope with its effects. “There’s the one for people who are veterans, and the one for everybody else.
“The veterans get taken care of.”
The military began to notice an increase in the number of ALS cases among troops who had deployed to the Persian Gulf and suffered from what became known as Gulf War syndrome. By the early 2000s, neurologists and epidemiologists were finding an increased incidence of ALS throughout the military, across all branches, over all periods of service, regardless of where or whether the troops had deployed.
Many were considerably younger than the average ALS patient, who is diagnosed in middle age. Most had been extremely physically fit for most of their lives.
In 2003, the VA set up a nationwide registry of veterans with ALS to find out how many were living, track their health status, collect data, including DNA samples and clinical information, and to provide a way for the VA to inform them about research studies in which they might participate. When it stopped enrolling people in the registry at the end of 2007, it had found 2,121 veterans with ALS nationwide. The dates of service ranged from before World War II to the post-9/11 war in Iraq.
So compelling were the findings that in 2008, the VA took the unusual step of declaring ALS a service-connected illness for nearly all veterans diagnosed with the disease, regardless of where or when they had served. The declaration presumes that something about their military service caused or aggravated the condition.
The declaration makes veterans with ALS eligible for monthly disability compensation, plus a monthly stipend; a monthly payment for survivors; health care for life, including prescriptions, medical supplies and specialized equipment; home-based primary care; home-improvement grants to increase accessibility and safety; vocational and occupational therapy; money for handicapped-accessible vehicles; funeral expenses and other benefits.
And, because it’s a progressive, degenerative disease that is most often fatal within two to five years of diagnosis, the VA now declares patients 100 percent disabled as soon as they’re diagnosed so they don’t have to keep going through the agency’s lengthy re-evaluation process every time their condition degrades.
“That keeps people like me from having to go back to the VA every six months and saying, ‘Hey, look what else I can’t do,’ ” said Jeff Long, a 23-year veteran who served in the Marine Corps and then the Air Force before retiring in 2008 to work in the private sector.
Long, who lives in South Raleigh, was diagnosed with ALS in 2011. The disease manifests and progresses differently for each patient. For Long, symptoms began with speech and respiratory problems.
“We thought maybe he had had a stroke,” said his wife, Barbara. “He started choking on his food. He kept saying he felt like his tongue wasn’t working.”
The first neurologist mentioned ALS but said he didn’t think Long had it. The second ruled out everything else — the way every ALS diagnosis is made, because there is no single test for the disease — and struggled to find a way to tell the couple.
“Doctors have a very hard time giving that diagnosis,” Barbara Long said, “because they know it’s a death sentence.”
Since identifying ALS as a disease in 1869, experts have been unable to determine a cause, find a prevention or develop an effective treatment. According to the ALS Association, the prognosis for a person who develops ALS now is essentially the same as it was 145 years ago. As the disease attacks nerve cells and pathways in the brain and spinal cord, the patient loses the ability to control muscle movement, resulting eventually in total paralysis. Patients can’t walk, move their arms, talk or breathe independently.
Meanwhile, their minds usually remain sharp.
Long, 52, is still working, but the time is coming when he’ll need to conserve the energy that requires. When he overdoes it, his wife says, he pays the price in sore muscles and halted speech. ALS patients are cautioned against over-exertion, because when they lose strength in a muscle, it doesn’t come back.
“It’s frustrating to see your abilities diminish,” Long said, his words understandable but slurred in the way of a dental patient shot full of lidocaine. “One day you can speak clearly and whistle, and the next day you sound like you’re chewing on marshmallows. One day you can do whatever you want, and the next you can’t button your shirt.”
Neither Long nor Thomas Corbett had ever been to the VA before they developed ALS. They rarely went to any doctor, because they were each in such good health.
Corbett joined the military in 1981, right out of high school.
“I wanted to get away from home,” he said, and from his family’s tobacco farm and the rural community in Caswell County where he grew up. After basic training at Parris Island, S.C., he was assigned to Camp Lejeune. He traveled twice to Cuba on road-building projects that lasted eight months each, did some cold-weather training in New York and Norway and was sent on a couple of cruises.
He might have served longer, but in 1986, the Marines were downsizing, and his career adviser told him there was little room for him to move up. By then, he and his high school sweetheart, Doris, had married and had their first child.
“So I decided to come back home.”
He worked a series of jobs before landing one he loved at P. Lorillard in Greensboro, where he ran a cigarette-packing machine. When he wasn’t working, he and Doris were usually outside, working on their garden or building something in their yard in the northern Piedmont, about 10 miles outside of Reidsville.
One day, he said, he was painting a new shed the couple had built when his ladder broke and he fell. He was scratched up and bruised but thought he was OK until a few days later, he started hurting. Soon, he was dragging one leg.
“There was no pain,” he said. “But my knee wouldn’t move.”
He went to a physical therapist, then a chiropractor, a back specialist and finally a neurologist at Duke University Medical Center, who said, “I think I know what’s wrong with you.”
He referred Corbett to Dr. Rick Bedlack, chief of neurology at the Durham VA Medical Center and director of the Duke ALS Clinic, which started in 2000 and is now one of the largest and most comprehensive ALS clinics in the world.
It’s one of five in North Carolina that specialize in ALS, including one that opened in Chapel Hill in January to help the growing clientele. The state ALS Association estimates there are about 600 patients with the disease in North Carolina. The VA is now treating 127 veterans in the state with ALS.
Bedlack said he was always fascinated with the workings of the human nervous system. He remembers watching his brother roll down the hill in their backyard in Connecticut when they were kids, how his eyes would wobble and he would stagger when he got up. Bedlack was a young doctor at Duke in the 1990s when he saw his first ALS patient, he said, “and thought it was the most amazing and terrible thing I had ever seen.”
He was shocked that medicine had so little to offer to people with the disease.
There still is only one drug that doctors routinely prescribe for ALS patients: riluzole, which can slow the progress of the disease in some people but doesn’t reverse nerve damage or muscle weakness. But there are medications to control muscle spasms and vitamin and nutrition regimens to help maintain energy and strength. Dozens of aids and gadgets help compensate for lost abilities. Among them are canes, electric wheelchairs and computers that translate eye movement into text and electronic speech.
At the clinic, Bedlack finds patients such as Long and Corbett who are veterans and don’t know they are eligible for VA benefits, and he connects them with specialists who can help them navigate the benefits system. The clinic and others in the state offer support groups for patients and their caregivers that meet in person and by teleconference.
Recently, Bedlack began offering a telemedicine option, which allows him to see patients in their homes via Web cameras and an Internet connection. It saves patients, some of whom live hours away, the exhausting work of traveling to the clinic, and it lets Bedlack see how the patients function at home.
“Veterans, especially, don’t like to complain,” Bedlack said. “You ask them how they manage at home, and they say, ‘Fine.’ But then you get a camera in there and you see that they can’t easily step into the shower, or they can’t get into or out of bed without help. This way, I can see if they need a bedrail, or a modification to their bathroom to make things easier on them and the person who is taking care of them.”
In the past month, at Bedlack’s recommendation, the VA helped Corbett get an electric wheelchair and a van that can accommodate it. Until then, Corbett said, he was getting out less and less, because while he can still walk using a rolling walker, it’s slow and laborious, with his big hands wrapped around the handles, his 6-foot-2-inch frame bent slightly over, and his feet shuffling into place.
Corbett is still learning to drive the joystick-operated wheelchair, and he’s waiting on a contractor to finish an estimate for renovating his bathroom and widening doors in his house so he can maneuver without bumping into things. But already, he said, he appreciates the device that he first viewed as a form of surrender to his illness.
“I’ve had to admit that I couldn’t do what I thought I could do,” he said. “That’s been rough.”
Long and Corbett say they are grateful to the VA for stepping up and improving care for veterans with ALS. They know the agency has been criticized for years for moving too slowly to process disability claims and for denying services that veterans believed they were owed.
In this case, both said, the VA has honored its promises.
Corbett and Long are honoring theirs, too.
“I’m still fighting it,” Corbett said of the disease. He’ll keep fighting for however long he has left.
He got that from the Marines.
©2014 The News & Observer (Raleigh, N.C.)
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