New benefits promise help for military veterans with Lou Gehrig's Disease
By John Simerman
Contra Costa Times
Article Launched: 10/18/2008 04:52:45 PM PDT


SAN FRANCISCO — The Marine Corps tattoo on his right arm has dulled over the years. Two decades of construction work have creased his hands, and a generous belly long ago replaced the solid military torso of his youth.

At 55, Jim Kerr of Vacaville could expect that kind of wear-and-tear. He could live with it, enjoy his job and vacations scuba diving off exotic shores.

What he never saw coming was the nerve damage that hobbles him and almost surely will kill him — perhaps in a few years — when it crawls into his chest and steals his breath. Or that his four, combat-free years of military service during the early 1970s could be to blame.

"It's hitting on the left side. The whole left leg, the whole left arm down to my hand," says Kerr. He has Lou Gehrig's Disease, the rare, progressive neurological disease that slays the nerves that control muscle movement, while the mind usually stays sharp. "Eventually you lose the ability to swallow. It weakens breathing muscles. ... I don't have much time. I kind of know what to expect. I don't know how soon."

Until his diagnosis in April after a few years of perplexing symptoms that included tripping and falling "over nothing, like a clod of dirt," what Kerr knew about amyotrophic lateral sclerosis he learned from the 1942 film "Pride of the Yankees." Gary Cooper starred as Lou Gehrig, the legendary baseball "Iron Man" who retired shortly after his diagnosis of ALS at age 36.

Two years later he was dead.

Now Kerr knows much more, including research studies that found military veterans at a 60 percent greater risk of ALS than the general population. Other research, including a major Defense Department study, showed service members deployed to Southwest Asia during the Gulf War were twice as prone to develop the disease as others on active duty.

While scientists can't pinpoint why, the research and advocates recently prompted VA Secretary James Peake to grant full access to lifetime health care, disability and death benefits to all veterans suffering from ALS, regardless of when or where they served. Veterans groups called the new regulations, put in place last month, unprecedented for granting full benefits for a disease with no clear cause to all veterans, with no time limit on claims.

"ALS is a disease that progresses rapidly, once it is diagnosed," Peake said last month. "There simply isn't time to develop the evidence needed to support compensation claims before many veterans become seriously ill."

The VA has established that kind of "presumption of service connection" for certain Vietnam veterans who suffer type 2 diabetes and a few cancers; for Gulf War veterans with ALS, fybromyalgia and chronic fatigue syndrome; and for tuberculosis and a few other diseases that emerge within a set time after service.

"Those were primarily due to a person's time in service and where they served," said Jim Bunker, president of the National Gulf War Resource Center. "This has never been done, not this broadly."

How many veterans and families may be affected is unclear. ALS remains a rare disease, with about 5,600 new cases each year and about 30,000 people in the United States living with it.

ALS clinics have just begun to track which of their patients are veterans, said Dallas Forshew, manager of clinical research at the Forbes Norris MDA/ALS Research Center at California Pacific Medical Center in San Francisco. About 250 ALS patients receive treatment and support there.

"They need help in home with bathing and dressing. You may get a van for your power wheelchair. These are things traditional insurance services won't cover," said Forshew. "This disease will nickel and dime you to death."

Possible benefits for Kerr and other veterans with ALS include monthly checks of as much as $2,500, free VA health care and drugs, costly wheelchairs and breathing equipment, grants to build ramps in their homes, in-home care for when the disease takes its worst toll, and survivors benefits for spouses and children. Surviving spouses of veterans who died years ago from ALS may also be eligible.

"I'm hoping it's going to help with drugs, and I think you get some allowance to fix up your home to accommodate the things you can't do," said Jim Barber of Walnut Creek. The former Army captain served in Vietnam and was diagnosed with ALS in 2006. Some ALS health care workers said questions remain over how the VA will rate ALS patients's disabilities, which determines the level of compensation.

"What I don't understand is ... how they decide who gets what," said Madelon Thomson, director of patient and family services for the ALS Association Greater Bay Area Chapter. "But the potential is enormous."

The new regulations fast track ALS patients, most of whom will die within three to five years of diagnosis, usually from respiratory failure.

"The breath muscles are tired. Patients really die of exhaustion," said Forshew.

Kerr visited the center Thursday for a spinal tap and EKG as part of a drug trial. He said the first signs came a few years ago when his fist would suddenly clamp shut. He began dropping things, and tripping. His shoulder stiffened. He struggled to button his jeans. He chalked it up to age and arthritis, but "it wasn't making sense," he said.

Then, while scuba diving off Fiji, he could not press the exhaust button that regulates the rise to the surface. It took months for a diagnosis. Once it came, Kerr researched the disease online.

"Every sign and symptom matched perfectly what was happening to me," he said.

A Marine from 1971 to 1975, Kerr spent a year in Okinawa, Japan, then on Mare Island for three years before his honorable discharge as a sergeant. He suspects the constant inoculations that military personnel receive are to blame for the higher rate of ALS.

"That's the one thing we all had in common," he said. "I wasn't exposed to any chemicals. I didn't go into combat."

But scientists have found no link between inoculations and ALS. Bunker suspects toxic chemical used to clean weapons. For Gulf War veterans, some evidence points to nerve agents and oil well fires, he said. Environmental factors may trigger a genetic predisposition to ALS, Forshew said. Even strenuous exercise may play a role, she said.

Kerr, who applied for the new benefits quickly, was forced to retire. Divorced, he now plans to move to Florida, where his three daughters and five grandkids live. The benefits, including in-home care, will help.

"My children, they got kids to raise," he said. "I don't want to burden them with having to take care of me."

Reach John Simerman at 925-943-8072 or jsimerman@bayareanewsgroup.com.

For more information on ALS or a report on research linking ALS and military service, visit the ALS Association at www.alsabayarea.org or call 415-904-2572.
Information on veterans benefits can be found at www.va.gov
For Contra Costa County Veterans Services, call 925-313-1481.
For Alameda County Veterans Services, call 510-577-3547 in Oakland; 510-265-8271 in Hayward or 510-795-2686 in Fremont.