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More vets suffer from ALS, but the VA moves effectively to help

By Martha Quillin
mquillin@newsobserver.com

More Information

  • For more information

    • In 2008, Congress established a nationwide registry to identify all cases of ALS throughout the country, veterans and nonveterans. The Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry, which manages that registry, is expected to begin releasing data from it sometime this year. Patients are encouraged to register at http://wwwn.cdc.gov/als/.

    • The North Carolina chapter of the ALS Association, based in Raleigh, advocates for all ALS patients in the state, raises money for research and offers grants, education and support groups for patients and caregivers. Information at http://webnc.alsa.org.

    • ALS clinics are located in Durham, Chapel-Hill, Winston-Salem, Charlotte and Greenville. Information about the clinics is available at http://webnc.alsa.org.

    • Paralyzed Veterans of America advocates for ALS patients as part of its mission. Information is available at www.pva.org.



REIDSVILLE 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.

“Right now, the main culprit for a possible cause of ALS in the military is exposure to environmental factors that occur very early in the training of people in the military,” Charlotte neurologist Dr. Benjamin Brooks said.

“There is an environmental link,” he said. “We just don’t know what it is.”

Brooks is director of the Carolinas Neuromuscular/ALS-MDA Center at Carolinas Healthcare System’s CMC Neurology – Edgehill. He has researched the incidence of ALS in military members for years and said one factor could be exposure to jet and helicopter fuels containing phthalates.

The Air Force and Navy are conducting epidemiological studies of the levels of such chemicals at bases, Brooks said.

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 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.

Loss of control

Long, who lives in 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.

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.

“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.”

‘My knee wouldn’t move’

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 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, 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 the one in Charlotte. The state ALS Association estimates there are about 600 patients with the disease in North Carolina. The VA is now treating 127 veterans with ALS in the state.

Drug can slow progress

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.

Still fighting

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.

But already, he said, he appreciates the device that he first viewed as a form of surrender to his illness.

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.

Charlotte Observer staff writer Joe Marusak and Charlotte Observer staff photographer Diedra Laird contributed.

Quillin: 919-829-8989
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