Darrell Lee has lost almost all control over his body as he grapples with the relentless grip of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
Lying in his daughter Ashley Lee’s Winter Garden home, the 72-year-old is kept alive by a series of medical marvels: a ventilator, feeding tube and a catheter. Communication has evolved into a language of subtle gestures: a closed-eye response for “yes,” a slight mouth movement of “I love you,” the shadow of a smile on his face. It’s a poignant performance that requires a discerning eye to detect, but to Ashley Lee, it’s a testament to the resilience that defines her father.
Though his muscles have failed him, his mind is awake.
“He’s not one of those people that’s going to say, ‘I’m tired. I don’t want to do this,’” Ashley Lee said. “He always looks for a way to overcome.”
Darrell Lee was diagnosed with ALS in 2009. Each year, the neurogenerative disease strikes roughly 5,000 Americans. It often leads to respiratory failure and death within two to five years, according to the U.S. Centers for Disease Control and Prevention. Less than 10% live more than 10 years after diagnosis.
The quest for a cure or a cause remains elusive, with only a small fraction of cases showing hereditary links and a few medications that slow the disease’s progression. Yet, hidden in Darrell Lee’s past is a clue to why ALS chose him: he’s a Vietnam U.S. Air Force veteran.
Studies indicate that people who served in the military are 1.3 to 2 times more likely than the general population to die of ALS. Data suggests this elevated risk of death occurs regardless of war or branch, or even if a vet served during peacetime. The association holds true for other countries, too, such as Denmark. In 2008, recognizing ALS as a service-connected injury, the U.S. Department of Veterans Affairs began covering 100% of treatment for veterans who served 90 days or more.
Still, advocates are pushing for more research, more recognition and more support for veterans and their caregivers. Those in the end stages of the disease require full-time ventilation and in Florida, ventilator-equipped facilities are scarce.
Ashley Lee, Darrell’s daughter, laments the widespread lack of awareness: “It’s surprising how many people still don’t know” about service’s connection to ALS, she said. She found out about it when her dad was diagnosed.
A veteran’s struggle
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