Military Veterans Are Twice as Likely to Develop ALS—Inside the Search for Answers
"I can’t kick, scream or try to get free. I can only lay there alone with my thoughts in my head," veteran Crystal Singer tells PEOPLE
In the early 1990s, when Maj. Randy Hebert of the U.S. Marine Corps was stationed at Fort Leonard Wood in Missouri, his body suddenly began to fail him. At first, the Desert Storm veteran tried to hide his increasing weakness from his wife, wearing a T-shirt and shorts into work with the excuse that he was working out first thing. In truth, his hands had become too wilted to fasten buttons or tie his boots, leaving him unable to get dressed without another officer’s help. Eventually, he would be diagnosed with amyotrophic lateral sclerosis, or ALS.
What Hebert didn’t realize then was that as a member of the Armed Services his odds of getting ALS are perhaps twice as high as those of the general population. “The risk is elevated for all veterans no matter when or where they served, whether they went to combat or not,” says Hebert’s physician Richard Bedlack, M.D., who is head of the ALS clinic at Duke University Health Center. No one really knows why anyone contracts ALS, says Bedlack, who theorizes that some veterans might be genetically predisposed to develop the disease and that the stress and rigors of military service might amplify injury to the body’s nervous system.
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Now 55 and living in Emerald Isle, N.C, Hebert spends his days in a motorized wheelchair that supports his head and neck. His hair remains as blond as it was in his youth but his motionless limbs have shrunken to little more than bone. Only his eyes, blue and unblinking, remain fully mobile. They are how he communicates, one letter at a time, with the world around him. “When I wake up in the morning, I thank God for giving me another day to live,” he writes.
Crystal Singer proved her strength during Army boot camp in 2006 as the only female recruit to score above 290, just shy of a perfect 300. While still in training she discovered a love of parachuting. “I can’t put into words, the feeling that I had when I jumped out of that plane,” she says through a computer she operates with her eyes. “I was hooked. I had to jump more and more.”
One day back home in the U.S. in 2011, she was addressing her platoon, when suddenly she began to slur her words. After a series of neurological tests, she was diagnosed with ALS that same year, at the age of 31. The disease has gradually claimed almost every muscle she has. “Imagine yourself buried alive,” says Singer, 37, who retired from the Army in 2012 and now lives in Kentucky. “I can’t kick, scream or try to get free. I can only lay there alone with my thoughts in my head.”
Troy Musser joined the Iowa National Guard when he was 17. The Clarence, Ia., native served tours of duty in Iraq, and later, Afghanistan, winning the nickname “The Machine” after earning maximum scores on Army fitness tests. While he was still on active duty in Afghanistan he developed an unexplained twitch in his right arm, and pulled a leg muscle that never seemed to heal. He was diagnosed with ALS a few months after returning home from his second deployment in 2011.
Today, the 36-year-old lives in Cedar Rapids with his father and a caregiver. His greatest joy comes from weekly visits with his children. “They have great imaginations, inquisitive minds, and infectious laughs,” he writes, also with an eye-controlled computer. “Unfortunately, they’ve never known me without my wheelchair, so they’re always amazed when they see an old picture of me without it.”
Yet Musser, Singer and Hebert all stopped asking “why me” long ago. Despite the physical hardships, Singer says she doesn’t focus on what she’s lost. Since her diagnosis, she has twice sponsored toy drives for a local boys’ home. Musser, too, directs his energy toward the things he can still enjoy, like spending time with his family. “We joke, laugh, and love,” he says. “We don’t really notice ALS anymore. I still have a warrior’s spirit.”
And while Hebert has always believed exposure to chemicals during the war contributed to his illness (epidemiologists have found an assortment of possible ALS risk factors such as repeated head injuries and exposure to toxic substances, heavy metals and pesticides), his sense of duty is so strong that even if he knew becoming a Marine would lay waste to his body, he says he would have signed up anyway. “I don’t really think about being a sad person because I am not,” he writes. “I have a good life and I am doing what I have always wanted to do. Sit on the beach and chill. It just happened earlier than I expected.”