CUMBERLAND — Four years after he was diagnosed with amyotrophic lateral sclerosis, Dr. Bruce Churchill’s will to battle the terminal and still-incurable disease remains strong.
The disease, more commonly known as ALS or Lou Gehrig’s Disease, gradually immobilizes its victims. It robbed the Cumberland Foreside resident of first the use of his legs, and in the past several months, for the most part, his arms. But his mind remains sharp, and he continues to use his gifts to help others.
For instance, Churchill, 57, still serves as an assistant coach for the Greely High School girls varsity volleyball team. What he cannot teach with his body he conveys with his words and expertise.
Churchill and his wife, Cindy, will be at the ALS Association’s Walk to Defeat ALS on Saturday, Sept. 10, which will start at Payson Park in Portland. Check-in for the three-mile walk is at 9 a.m., and the walk begins at 10:30 a.m. Cindy is co-chairwoman of the Portland walk’s organizing committee.
“It makes me feel like I’m doing something to get the word out about this disease, and perhaps working towards getting a cure for it” she said last week. “I don’t know if it’s going to help Bruce, but I’ve known other people who’ve died of this disease, and it just seems ridiculous that not enough research is being done to find out something about this disease.”
Bruce Churchill, who has delivered about 6,000 babies over three decades before ending his practice in July 2010, was diagnosed with ALS in July 2007. He had twitching and cramps in his leg muscles the previous fall, and later some hip pain. The disease was finally diagnosed when a physical therapist found Churchill had weakness in his right leg after demonstrating repetitive walking exercises.
According to information at the ALS Association’s Northern New England website, alsanne.org, ALS is “a neurodegenerative disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord.”
A common first symptom is a painless weakness in a hand, foot, arm or leg, as it was in Churchill’s case.
The ALS Society of Canada notes that 80 percent of people with the disease die within two to five years after diagnosis, when they are no longer able to breathe or swallow. Ten percent of victims could live a decade or longer.
Churchill, who now must be in a wheelchair, uses a positive airway pressure machine at night and when needed during the day. The device does not provide oxygen, but helps push air into Churchill’s weakened lungs.
“You get constricted lung volumes, and your diaphragm doesn’t work,” he said. “So this (apparatus) just increases the pressure of the air going in.”
Churchill’s declining condition in recent months has increased his dependency on his wife.
“I have to feed him, dress him, bathe him, shave him, wash his face, everything, because he just can’t do it,” Cindy said. “So in the last six months, it’s gone from being able to do a lot of stuff himself, to really not being able to do anything at all for himself.”
When they were first interviewed two years ago, Cindy said the first year after her husband’s diagnosis was terrible, but that they came to realize they had to live a day at a time.
These days, Cindy said, “I guess it’s still the same. Obviously it’s a lot harder work, it’s more discouraging, but we can’t do anything except just deal with each day as it comes and, (with) each little change, we try to work with it and try to figure out how to deal with it.”
It’s also tough on their three daughters. The oldest, Cristina, has deferred her fourth year of medical school to lend a hand at home.
“Right now, we’re really just starting to look for more assistance,” Cindy said.
It gets hard to be positive, Churchill said, because the disease is “progressing more rapidly, so that’s what’s difficult.”
His wife of 33 years added that “it’s just hard to see a person, who was so active and wants to be so active, can’t be active at all.”
Churchill has been through a medical trial at Massachusetts General Hospital for the past few years; he started injecting himself twice a day in October 2007 with an experimental medication to aid in ALS research.
But it is unknown whether medications he has taken to prolong survival have made a difference. “They need more people to do the trial,” Churchill said.
The ALS walk is geared toward raising money for ALS research, as is the Bruce Churchill Classic, a high school girls volleyball festival to be held Saturday, Sept. 17, in Standish, and a week later in Ellsworth.
Churchill’s 2011 ALS walk page is at web.alsa.org/goto/blc. His fundraising goal for patient services and research is $5,000, of which 22 percent had been raised as of last week. The Churchill’s Champions team, of which he is a member, has raised 42 percent of its $20,000 goal.
Churchill offers updates about his condition on his CarePages website, carepages.com/carepages/BruceChurchill/patient. A free membership is required to view and comment on the page.
Churchill said it can be tough to be optimistic if he looks too far ahead. In the shorter term, coaching gives him something to look forward to on a regular basis.
“I get a chance to interact with the other coaches, and with the students … (and) continue to have something to add,” he said.
Churchill noted that ALS “is difficult because it slowly takes away everything that you can do. And it’s hard for family. And it just is kind of taxing on your will.”
“It makes you appreciate what you’ve had,” Cindy said, “and makes you wish you’d appreciated it more.”
Both are people of faith. This, and the prayers of many people, have helped Churchill.
He said he no longer asks, “why me?”
“That’s not important,” Churchill said. “We don’t know the big plan. … I’m not worried about the future; I think more about what I’ve done.”
Dr. Bruce Churchill of Cumberland, an obstretrician-gynecologist before ending his practice in July 2010, was diagnosed four years ago with amyotrophic lateral sclerosis. His wife, Cindy, is co-chairwoman of the organizing committee of the ALS Association’s Portland Walk to Defeat ALS. The walk will be held Saturday, Sept. 12.
On its website, the ALS Association notes that according to a recent article in the science journal Nature, investigators at the Northwestern University Feinberg School of Medicine have found a new gene that is linked to familial ALS and is involved in accumulated proteins being processed.
The discovery adds support to the notion of abnormal protein handling being an underlying cause of the disease.
“Optimal functioning of the neurons relies on efficient recycling of the protein building blocks in the cells,” the ALS website says. “In ALS, it appears that the recycling system is abnormal. The cell can’t repair or maintain itself and becomes severely damaged.”
Researchers say the breakdown happens in the disease’s three forms: hereditary, also known as familial; non-hereditary ALS, called sporadic; and the type that affects the brain, known as ALS/dementia.
“This discovery provides further evidence that protein mishandling is a common target for ALS and important for the development of new therapies,” the website says, also noting that the find could also play a larger role in other neurodegenerative diseases, like Alzheimer’s and Parkinson’s, which are characterized by protein aggregations.
“The removal of damaged or misfolded proteins is critical for optimal cell functioning,” according to the website.
— Alex Lear