Veterans with ALS in race against time

Afflicted with Lou Gehrig’s disease, they fight for military benefits as science hunts the cause 
by Josh Mitchell, The Baltimore Sun

Left: "The mind stays strong, but the body…" says Anthony Averella, 53, who served in the Army and National Guard and suffers from deadly Lou Gehrig’s disease. He has lost more than 50 pounds in the past year. (Sun photo by Chiaki Kawajiri / May 16, 2008)

The first time he fell, Army Sgt. 1st Class Anthony Averella was strolling on a military base in Afghanistan. He got up, collected himself and brushed aside the concerns of fellow soldiers. Within months, Averella was stumbling regularly, and his hands began inexplicably clenching into fists.

At first, tests revealed nothing. Three years ago, the Maryland soldier found out what was afflicting him: Lou Gehrig’s disease.

Once an intense weightlifter, Averella is now bedridden at his Glen Burnie apartment, every part of him dying but his mind. He can barely move on his own and communicates by typing with one hand on a laptop computer.

"Terrible disease," he whispered recently from a hospital bed…

Military veterans such as Averella are the subject of a Duke University study that will attempt to solve a mystery: Why are soldiers more likely than the general population to suffer from amyotrophic lateral sclerosis, or ALS?

Early this decade, the Veterans Affairs and Defense departments released a study showing that veterans of the 1991 Persian Gulf War were twice as likely as other soldiers to get ALS, and the federal government extended disability compensation. Now, some veterans and advocates, including members of Congress, are pushing the VA to extend those benefits to all veterans with the disease.

Relatives of Averella, 53, who receives disability pay because he was in the Army when diagnosed with ALS, are among those who suspect that the illness is linked to military service.

"Other people came home – they lost an arm, lost a leg," said John Y. Averella, his brother. "But he came home with a death sentence."

The fatal neurological disease, named after the legendary New York Yankee, is rare, afflicting about 30,000 Americans, fewer than 10 percent of whom served in the military. It progressively kills motor neurons until total paralysis sets in. But the mind stays sharp, leaving patients fully aware of their deterioration. Most die within five years of diagnosis.

No one knows for sure what causes ALS, but some veterans and their families believe it can be caused by exposure to chemicals and toxins, including nerve agents that they suspect were in the air during the first Gulf War. Studies have provided no answers, and scientists are skeptical that there is a link.

They point out that in scientific terms, the incidence rate among veterans is relatively low when compared with environmental links established for other diseases. Smokers, for example, are 10 to 20 times more likely to contract lung cancer than nonsmokers, one scientist pointed out.

Testifying before a congressional committee last summer, retired Air Force Brig. Gen. Thomas R. Mikolajcik, who has ALS, said the government has not done enough research on potential causes and might be exposing service members now in Iraq to an elevated risk of the disease.

"If we know that it happened in the first Gulf War, and now we’re exposing millions more, why aren’t we doing more, and how are you going to answer those people in three, five, 10 years that come down with this disease?" Mikolajcik said in an interview.

Like other Gulf War veterans, Mikolajcik receives a disability check from the VA. Depending on a veteran’s income and other factors, payments can range from $117 to more than $2,500 a month. He has received thousands of dollars to equip his house with ramps, buy an accessible van and hire a nurse who visits his home.

Veterans with ALS who did not serve in the 1991 Gulf War do not qualify for many of those benefits. Rep. Henry E. Brown Jr., a South Carolina Republican, recently introduced legislation that would designate ALS as a service-connected disease, extending full disability and health care compensation to all veterans with the disease.

Speculation about possible links between ALS and military service grew in late 2001, when the Departments of Defense and Veterans Affairs released the results of the study. Veterans groups had been fighting for the VA to recognize ALS and other, nameless ailments that fell under the broader term "Gulf War syndrome" as service-connected diseases.

At the time, the study identified about 40 cases in which Gulf War veterans had contracted ALS but did not suggest possible causes. A handful of studies has been conducted since then, with none reaching a definitive conclusion.

Mark Crown, director of the VA’s environmental agents service, said the department is unlikely to change its policy unless further research establishes a link. ALS "is an ongoing concern," he added, but finding the cause is difficult because the disease is so rare.

"It’s unlikely we’re going to come up with a single definitive study that’s going to lay this to rest," he said.

Researchers at Duke University are attempting to pinpoint a cause. They are in the middle of a five-year study that is the largest to examine potential links between ALS and military service. The study is being funded by the National Institutes of Health and the ALS Association. 

Researchers are employing a VA database that contains information on more than 2,000 veterans with ALS. The study is a race against time: Hundreds of the veterans have died before researchers could interview them.

Silke Schmidt, an associate professor at Duke who is leading the study, said one goal is to determine whether those who join the military are somehow predisposed to the disease, or whether environmental factors are at play.

"Is it anything specific to a particular deployment, or is it something about the lifestyle of people that go to the military?" she asked.

ALS is particularly prevalent among athletic men, who are more likely to serve in the military, she noted.

Researchers are attempting to obtain genetic samples and to conduct two-hour interviews with each veteran with ALS. The questions cover lifestyle, such as diet and exercise, as well as their military duties and what, if any, chemicals and toxins they were exposed to during deployments.

Edmund Sistek, 71, of Pikesville, enlisted in the Army in 1960 and served three years in the Panama Canal Zone.

Three decades later, he started to lose his balance whenever he went dancing.

"I never thought about it at the time, other than I was getting old," said Sistek, a retired middle school teacher.

Then his speech began to slur, and he started losing his balance more frequently.

Initially, Sistek received a diagnosis of Parkinson’s disease, another neurological ailment. But when his condition worsened, doctors performed more tests. Ten years ago, doctors told him he had ALS.

Researchers have studied veterans such as Sistek to determine what, if any, toxins they might have been exposed to while deployed, but have turned up nothing conclusive.

Averella, who grew up in the Baltimore area, joined the Navy 30 years ago, then joined the Maryland National Guard.

After experiencing "drop-foot," in which his feet went limp, causing him to fall, he was sent to an Army facility in Colorado, where doctors told him he had a motor-neuron disease, said his wife, Flo Averella.

His daughter looked up his symptoms on the Internet and called her father hysterically, she recalled. She told him she thought he had Lou Gehrig’s disease.

"I don’t think the two of us initially realized how bad it was, how it was going to get worse," his wife said.

The couple went on nearly a dozen cruises, including one to the French beaches of Normandy, where Anthony Averella maneuvered around World War II memorials in a wheelchair. Last year, he became too weak to travel.

Until two weeks ago, he was being treated at Baltimore Washington Medical Center in Anne Arundel County, waiting for a bed to open up at Perry Point. Lying in a hospital bed two weeks ago, he could still mouth words.

"The mind stays strong, but the body … " said Averella, who has lost more than 50 pounds in the past year.

Given the incidence rate of ALS among veterans, Mikolajcik said, the VA should not differentiate between those who served in the Gulf War and those who did not.

"Why should my comrades in arms that were in Somalia, Grenada, Panama, Vietnam, Korea or anywhere else around the world get less than those of us that served in the Gulf War?" he asked.

 

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