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
Darrell Lee’s 15-year bout with ALS started, as all do, with the degeneration and death of motor neurons: nerve cells in the brain and spinal cord that control voluntary muscle movement. As these neurons died, they stopped sending signals to his muscles, causing them to weaken, twitch, and eventually atrophy.
It’s still unclear what may have contributed to his ALS, a disease thought to be caused by a variety of genetic and environmental risks. The disease is more common among people who are white, male, and over 60. Sporadic evidence suggests exposure to pesticides, chemicals, heavy metals and head trauma during service may contribute to veterans’ increased rates of this disease, according to a 2020 review of 19 studies on the topic, though the study’s authors said there wasn’t enough evidence to make a conclusion.
As Darrell Lee’s condition progressed, he persisted, aided by a chin-operated wheelchair and a sip-and-puff computer supplied by the Veterans Health Administration. (Though there’s no cure, the VA can provide equipment, support and a full treatment team.) He became ventilator-dependent in 2016 but didn’t lose the ability to talk or eat until two years ago, Ashley Lee said.
“When we asked him if he was scared, he said, ‘Of course I don’t want to not be able to talk, but the biggest thing that makes me sad is that I won’t be able to make people laugh anymore.’ He just never wanted to take anything too seriously,” she said.
A caregivers commitment
There are 37 veterans with ALS in the Orlando VA’s catchment area — Orange, Seminole, Osceola, Brevard, Lake, Volusia and parts of other surrounding counties. These patients have an average age of 67, and all but 1 are male, said Orlando VA Healthcare System Melanie Thomas.
Though the Orlando VA is closer, Lee’s family has chosen to commute from Winter Garden to the James A. Haley VA Hospital in Tampa for Darrell Lee’s treatment since the beginning. He has stayed at Ashley Lee’s home since his diagnosis, and she’s dedicated to caring for him until the end.
“It’s my dad and I’ll be with him however long I need to,” she said.
She talks to him, jokes with him, plays him ’70s rock music, and takes him out to experience the world as much as possible. Just a couple weeks ago, they went to a Tampa Bay Rays game.
“We can’t forget that even though the disease itself is devastating and awful, there’s still the person behind it,” said Lee, whose dad’s battle inspired her to get a doctorate in psychology. She’s focused on quality-of-life research for veterans with spinal cord injury and disease.
An increasing burden
In the final stages of this disease, however, Ashley Lee is finding it harder and harder to serve as a caregiver.
Since her husband died in a 2013 motorcycle accident, her 18-year-old daughter is often the only help she has.
Lee, a fellow for the Elizabeth Dole Foundation for veteran caregivers, is advocating for the passage of the Elizabeth Dole Home Care Act, a bill that aims to expand access to VA home and community services. In July, the U.S. House Veterans’ Affairs Committee passed it unanimously.
“The VA has been incredible for us over the years,” she said. “We always have considered ourselves very blessed to have them, but I have noticed, especially in the later years, that our biggest obstacle is help.”
Ashley Lee said she very rarely leaves home without taking her dad with her, typically only venturing out for necessities like her doctors’ or dentist appointments, during which her daughter watches him. Though the VA has a number of programs that aim to provide at-home assistance ranging from aides to trained RNs, and the agency pays Ashley Lee to be an at-home caregiver, she hasn’t been able to get a ventilator-trained nurse to the house to watch her father.
“I’ve been isolated and wouldn’t be able to leave my house ever, if not for my daughter, for three years now,” she said.
Dr. Neil Thakur, chief mission officer at the ALS Association, said that veterans have “the best ALS care coverage in the country” thanks to ALS’ designation as a 100% service-connected condition, but caregiver support is something that needs improvement.
ALS Association surveys indicate 68% of ALS caregivers spend more than 30 hours per week providing care and almost half feel unprepared for more intense caregiving duties as the disease progresses.
Florida falls short
It’s even harder to find support for Floridians with ALS who are ventilator-dependent.
Less than two dozen Florida nursing homes in total offer care for this group of people, according to data from the Agency for Healthcare Administration.
There aren’t any community nursing homes at all for ventilator-dependent veterans in the state of Florida, said Dr. Kevin White, who is the chief of Spinal Cord Injury Medicine at the Michael Bilirakis Spinal Cord and Disorders Center at the James A. Haley Veterans’ Hospital in Tampa.
“That’s a huge challenge,” White said. “In the future, that’s something that may be needed.”
Another hurdle: not every veteran with ALS realizes all the resources available to them, says White, who coordinates care for ALS patients throughout Central Florida, not just Tampa.
“Unfortunately, most veterans do not know that this is a 100% service-connected condition,” White said. “We’re hoping to do a lot more outreach to the community, and let them know that this is something that’s here. There’s a big difference in terms of what’s able to be provided for a veteran in the VA system versus outside of the VA system.”
He added that the VA system throughout Central Florida could accommodate more ALS patients than it currently sees.
“It’s rare that there would be any waitlist in terms of providing care for any of our patients,” White said.
Standing in a hospital hall at the Tampa VA where White works, Ashley Lee marvels at how long her dad has lived compared to others with the disease: 15 years.
“He’s the longest-living ALS patient at this Tampa VA right now, which, unfortunately, doesn’t seem like he’s going to be too much longer — but right now, it’s still true,” she said in a Tuesday phone call.
He suffered a serious health setback a couple of weeks ago, and has been hospitalized ever since.
As she looks back at her dad’s life, Ashley Lee laments that in the time from his diagnosis in 2009 to now, there is no firm answer as to why veterans worldwide experience this disease at higher rates than other populations.
“There have been so many advancements,” she said. “But in all of these 15 years, there’s been absolutely zero advancement in the answers to why.”
There has been progress on other fronts. Several drugs have been approved to slow the progression of ALS, with varying success rates. The 2014 ALS Ice Bucket Challenge increased awareness and amplified funding, advocates agree.
Researchers are continuing to ask why and have also begun to examine whether there’s a way to prevent veterans from developing the disease by targeting pre-symptomatic people who have biomarkers that suggest the disease is on its way.
“There’s a lot of hope on the horizon, and there’s better and better news coming out every day,” said ALS Association’s Thakur. “I do believe we can make dramatic improvements in the number of people who are able to live with ALS in a much more humane and comfortable way.”
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