Air Force vet diagnosed with ALS raising awareness while fighting for life

Tom Garey was diagnosed with ALS nearly 20 years after leaving the Air Force, and is now focused on helping other veterans with the disease. (Tom's Troops)

Like many couples with teenagers, Tom and Lara Garey used to daydream about a life of easy retirement once their son graduated from high school and moved on to college. But tragedy struck for the Texas family in December 2015, when the Air Force veteran started having trouble with the buttons on his shirt. Soon after, they learned that those easy days they dreamed of would never come.

Tom Garey was told he had amyotrophic lateral sclerosis (ALS) in March 2016. Two years later, the 49-year-old no longer eats or walks on his own, has to use a breathing machine and has been banking his voice so that once the disease eventually robs him of the ability to talk, the eye-gaze technology that will speak for him sounds like him. The couple has opened their home to a caregiver so that Lara Garey can continue working.

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ALS, also known as Lou Gehrig's disease, is a disease that causes the death of neurons controlling voluntary muscles.

“I tell people all the time it’s a death wish, for sure,” Lara Garey, his wife of 28 years, told Fox News. “It takes your breath away. Everything you thought is completely turned on its head – in a moment we went from this family that had a man-child of a son and was hoping he would get out of high school and go to college, and Tom and I would retire and enjoy our lives and just enjoy the future – to being told you have ALS, and it takes that away from you.”

Lara and Tom Garey have been traveling with their son as part of Tom's bucket list. (Tom's Troops)

Unfortunately, Tom Garey’s story is not unfamiliar territory for many military families. According to a paper published by the ALS Association in 2013, U.S. veterans have almost a 60 percent greater risk of developing the disease than civilians. While the reasons for the high percentage of diagnoses is still unclear, Tom and his wife now reach out as often as they can to other veterans and urge them not to hide potential symptoms.

“ALS typically hits his age group – early to mid-40s through the 50s – and most guys, especially these military guys, they’re just going to chalk up these symptoms as part of getting older,” Lara Garey said. “We’ve been reaching out, at least to those guys, to let them know that this has happened and be alert.”

Tom Garey told Fox News that one of his buddies who served with him in Guam was recently been diagnosed with ALS, which likely wouldn’t have happened if he didn’t share his story.

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“Be mindful of your body,” Tom Garey said. “If something is out of the norm, go get it checked. Because if it’s ALS, the sooner the diagnosis the longer lifespan you have, because they can start treating you.”

Tom Garey currently receives his treatment at a private ALS center in Houston as well as an ALS Clinic at his local Veteran Affairs. The VA has helped them modify their home and set them up with assistance, but Lara Garey noted that not all veterans receive the same level of care from every center.

“We have to fight in our area, and stay on the VA quite often to get things,” Lara Garey, who is also part of a military caregiver support group, said. “But the way we look at it is, this is going to help the next guy, because maybe the next guy doesn’t have the energy to fight or have a wife to do it – it’s a bigger picture at this point.”

For now, the family travels as often as they can to check off some items on Tom Garey’s bucket list. They chronicle their meetings with other veterans and daily struggles with ALS on the “Tom’s Troops” blog, and are relying on the military mentality they learned from his days in the service of putting one foot in front of the other.

“Although the prognosis is not good, you’re not going to die today or tomorrow,” Tom Garey said. “Go out and live life, enjoy it.”

He said he leans on family and friends and has learned to accept help that is offered to help him achieve his current goal.

“One thing in the military is you always want to accomplish your objective,” Tom Garey said. “My objective is to live as long as you can, and focus on winning.”