For years, Randy Saubert sought answers

The Colorado Springs Gazette
April 9, 2003, Wednesday
Colorado Springs, Colo.

For years, Randy Saubert sought answers. Within months of returning from duty in the Persian Gulf in May 1991, Saubert started having health problems. Trouble gripping things. Difficulty sleeping. Memory lapses. Slurred speech.

Many of his symptoms fit in with the mysterious constellation of illnesses known as Gulf War Syndrome, but doctors could not tell him what was at work in his body. They could not tell him why his health was continuing to worsen.

In January, the Colorado Springs, Colo., man, 46, finally got his answer: a diagnosis of amyotrophic lateral sclerosis, or ALS. Known popularly as Lou Gehrig's disease, ALS is a deadly neurological disease that destroys the nerve cells that control muscle movement.

"It's good to know in a way what it is," Saubert said. "But in a way it's not, knowing what's going to happen." His wife, Jacki, finished the thought.

"Knowing that there's no cure for it," she said. "Knowing that the end result's going to be my husband dying."

The two are convinced the disease is a result of Saubert's seven months of service in the Persian Gulf.

A 2001 study later found veterans who served in the Persian Gulf War were nearly twice as likely to develop ALS as their non-deployed counterparts.

While a link was not proved, the evidence was enough for the Veterans Affairs department to declare ALS a service-related condition for veterans diagnosed with it after deployment in Operation Desert Shield and Desert Storm.

It's also enough to raise concerns about the future health of U.S. troops now in Iraq.

To better understand patterns of ALS in veterans, the VA last week launched the National Registry of Veterans with Amyotrophic Lateral Sclerosis.

The registry also will provide a way for the VA to inform veterans about new treatments and research into ALS, said Dr. Eugene Oddone, acting director of the Epidemiologic Research and Information Center at the VA Medical Center in Durham, N.C. The center will run the registry in cooperation with the VA Medical Center in Lexington, Ky.

The plan is to contact Gulf War veterans in the initial study to enlist them in the registry, but veterans from other conflicts who have ALS will be included as well.

About 1,200 to 1,800 patients are expected to be enrolled in the registry in three years. Saubert already has contacted the registry.

Just as there is no definitive answer as to what causes Gulf War Syndrome, no cause has been found for the apparent link between ALS and service in the gulf, Oddone said.

"It would be nice to say 'Stay away from that or don't do this,'" he said. But with no idea of the trigger, there's no way to ward against it as U.S. troops again wage war in Iraq.

ALS, however, remains "incredibly rare," even with the heightened risk, Oddone stressed. The initial study involved nearly 700,000 service members deployed to the Persian Gulf between Aug. 2, 1990, and July 31, 1991, and another 1.8 million who were not deployed to the region during the same period. The study found 40 cases of ALS among deployed veterans. Scientists would expect to find 33 cases in an average group of that size over the same time.

Relative to other battlefield hazards, Oddone said, "this is way, way down on the list."

But for Saubert, it's a hazard that will prove as lethal as any bullet or mine.
"It's getting worse, I know," he said quietly.

As a fuel-truck driver with the 360th Transportation Company at Fort Carson, Colo., Saubert was all over the Persian Gulf. At one point, his unit was spread across 500 miles in Saudi Arabia, Iraq and Kuwait.

His health problems began surfacing six months to a year after returning home. Most alarming have been the problems with his hands and arms.

"That's all the farther I can straighten them," Saubert said, looking down at his bent hands. "I don't have no grip at all."

Tying shoes is an ordeal. He rarely if ever wears button shirts. He still drives a forklift in his job at Stock Building Supply, but must use the palm of his hand to work the controls.

"The guys at work help him out tremendously," Jacki Saubert says. "If he needs his jacket zipped, they'll zip his jacket. He can't wear gloves because his hands are so crippled up."

Now the nerve damage is creeping into his legs. Nerves are dying from knee to ankle in his right leg.

He's also having increasing difficulty swallowing. Doctors have talked about the need for a feeding tube before long.

Jacki Saubert, in a wheelchair because of injuries from a car crash two years ago, accompanies her husband on all his doctor visits. She marvels at his determination and his work ethic on the job and at home.

"He still gets out and mows the lawn and still pulls weeds and does what he can. How he does it, I have no idea."

The family isn't looking for sympathy, she said, but wants to get the word out to Gulf War veterans that if they're having health problems, they should get help. In her husband's case, she wishes a diagnosis had come quicker, that they had more time to prepare for the inevitable.

"We don't know when it's going to happen." she said. "But it's going to happen."

(c) 2003, The Gazette (Colorado Springs, Colo.).

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