BUCKSPORT — “I wasn’t going to let ALS beat me,” David Doane said in a recent interview when recalling the moments after learning he had amyotrophic lateral sclerosis (ALS) in 2018.
Also known as Lou Gehrig’s disease, ALS affects nerve cells in the brain and spinal cord and causes decreases in muscle functionality, leading to difficulty walking, moving, speaking and breathing, according to the ALS Association.
Living with ALS is not the way Doane initially imagined spending his retirement.
In 2017, Doane and his wife, Michelle Rhodes, graced the cover of The American in a story about their decision to retire and move from Texas to raise rescue Clydesdale horses on their “dream farm” in Bucksport.
Now, he spends his time working with the organization I Am ALS, where he has become an advocate and champion for legislative action to help make life better for those battling the disease, all while still taking care of his horses.
“I stayed strong, I stayed busy, I stayed positive,” he said.
He notes that not everyone diagnosed with ALS is able to maintain past lifestyles the way he has, due to the fast progression of the disease.
“I’m just very, very fortunate that mine was slow enough and we caught it early enough,” he said.
The diagnosis was still jarring.
“It was really a shock to me,” Doane said.
He was also shocked to learn that ALS had not been cured, especially after all the awareness the disease received following the 2014 Ice Bucket Challenge.
The viral video campaign prompted participants to dump a bucket of ice over their heads to raise awareness for ALS, encourage donations for research and then nominate others to do the same.
So, Doane has gotten to work.
“I needed to do something and so I took on ALS pretty much any way I could,” Doane said.
“I sort of latched onto [the organization] I Am ALS, because it was run by people who had ALS.”
He has worked largely on the organization’s Legislative Affairs Community Team and has championed bipartisan efforts to provide services for ALS patients in a timely manner due to the aggressive nature of the disease.
He worked with U.S. Rep. Jared Golden (D-Maine) to advocate for a bill that waives the five-month waiting period for ALS patients to receive their Social Security Disability Insurance (SSDI).
The bill passed in December.
This is critically important as many patients are “already so deep into ALS” within five months, Doane explained.
By that point, many are already overwhelmed with medical costs and other financial demands of the disease, such as making their homes more handicapped-accessible.
Doane also is advocating for the bill Accelerating Access to Critical Therapies for ALS (ACT for ALS), which would grant patients outside of clinical trials access to potential treatments.
He explained that there are only two drugs with federal approval to treat ALS and all other treatment is experimental and done in clinical trials.
Most patients will not live long enough to wait for the lengthy federal drug approval process, he said.
Additionally, the bill creates a grant program to fund research and establishes a Health and Human Services collaborative for neurodegenerative diseases.
The bill was introduced last year and will be reintroduced this year.
“We’re hoping we can get that pushed through,” Doane said.
Doane also is advocating for The Promising Pathway Act.
The bill “calls for the U.S. Food and Drug Administration to establish a rolling, real-time, priority review pathway to grant or deny provisional approval status for drugs intended to treat, prevent or diagnose serious or life-threatening diseases or conditions,” similarly to what was done to combat the COVID-19 pandemic and speed-up vaccine production and approval.
The ALS community is relatively small.
Doane explained that it is not a requirement for ALS cases to be reported to the Centers for Disease Control and Prevention, making it difficult to determine how many people in the U.S. have ALS.
The CDC estimates the figure is about 12,000 to 15,000.
According to the ALS Association, someone is diagnosed — and someone passes away — every 90 minutes from the disease.
Doane’s own journey with ALS began when he developed a limp the summer of 2018.
Initially, both he and his doctor thought it was from a previous injury, but then Doane began experiencing weakness in his right hand.
A neurologist diagnosed him with ALS in December that year. The diagnosis was confirmed when Doane went to Massachusetts General Hospital a month later.
“My progression the first six months was really pretty dramatic,” he said, sharing he could barely walk and could not hold a coffee cup.
He began treatment with an aggressive drug therapy which stabilized and even improved his symptoms.
His walking has improved, and he can hold a coffee cup.
“I am the exception to the rule,” Doane said.
According to the ALS Association, “the average survival time is three years, about 20 percent of people with ALS live five years, 10 percent will survive 10 years and 5 percent will live 20 years or longer.”
Doane said, “I have seen that firsthand. Especially in this area.”
He said he personally knows of 15 people within 20 miles of Bucksport currently battling the illness.
Doane acknowledges the real struggles of the “brutal disease.”
“It’s really hard on the families,” he said.
Still, Doane’s optimism and perseverance came through clearly in a phone interview.
“I am so glad I lived a good life,” he shared. “My wife is very, very supportive … we approach life as we did yesterday, as we did the day before.”