CUMBERLAND — For two years Dr. Bruce Churchill has struggled with a disease that gradually immobilizes its victims and leaves them with an average life expectancy of two to five years after diagnosis .
Still, the way the 55-year-old has negotiated his journey with amyotrophic lateral sclerosis – known commonly as ALS or Lou Gehrig’s Disease – can give hope and perseverance to others who have been stricken by the disease.
Churchill and his wife, Cindy, will be among those participating in the ALS Association’s Walk to Defeat ALS in Portland on Saturday, Sept. 12. The 3 1/2-mile walk begins at the entrance to Payson Park along Baxter Boulevard. Registration opens at 9 a.m., and the walk starts at 10 a.m.
Churchill, an obstetrician-gynecologist, had twitching and cramps in his leg muscles during the fall of 2006. He suspected restless leg syndrome, but his doctor ran blood tests in January 2007 that came back abnormal. The results were not conclusive for any particular disease, and the doctor sent Churchill to a neurologist in Portland. Still, no definitive problem was found.
“The hallmark is weakness, and I didn’t have any weakness at that point,” Churchill said last week.
He experienced some hip pain in the summer of 2007. He went to a physical therapist who determined that he had weakness in his right leg after demonstrating repetitive walking exercises. Churchill was diagnosed with ALS that July, one of the one in 30,000 worldwide who will contract the disease.
Churchill has been participating in a medical trial at Massachusetts General Hospital and since October 2007 has injected himself twice a day with experimental medication to aid in furthering ALS research. He said there is one U.S. Food and Drug Administration-approved drug, Rilutek, which has been shown to prolong survival by about three months; Churchill is taking that medicine. There was a study with about 1,000 other drugs using mice with a similar progressive neurological disease as a test model, and a few of those – including Ceftriaxone, a drug Churchill takes intravenously – were shown to prolong survival, he said.
Churchill underwent a second study with that drug, during which its safety was analyzed. He started a third trial in June to determine the drug’s effectiveness.
“Most of the people who were in my trial at Mass General are not doing phase three,” Churchill said. “As it turns out, many have either passed away or are too sick to continue it.”
Churchill said he has often been told that ALS has had a slower effect on him than it has on other people. The rate of progression varies with age, he explained, increasing with older people. It also depends on where in the body the disease starts. Since it started in Churchill’s extremities, it has tended to be slower in his case, he said.
People with Bulbar ALS demonstrate difficulty with speech, swallowing and breathing and experience a more rapid progression of the disease, Churchill said.
Churchill, who walks with two canes, feels the disease most profoundly in his right leg, with some detection in his left. He continues to work as an obstetrician-gynecologist at Coastal Women’s Health Care in Scarborough four days a week, although he stopped doing night calls when he was diagnosed and ceased delivering babies in December 2008. He continued to do surgeries through this June, stopping when he found he could not stand long enough. He now continues to see patients for annual exams, office visits and various office procedures. He gets help from his car to his office with a wheelchair.
Churchill continues to serve as assistant varsity coach for the Greely High School girls volleyball team. The Maine Games State High School Girls Volleyball Championship, a tournament not related to the high school season, is this year named the 2009 Bruce Churchill Classic with an eye toward raising money for ALS research.
The Churchills first participated in the ALS walk two years ago, using the event as a way to announce Churchill’s diagnosis. His wife and three daughters, ages 17 to 24, as well as his volleyball team and patients have become involved in the cause through donations and participation.
The walk is a uniting force, said Cindy Churchill, who chairs the walk organizing committee this year and is captain of the Churchill’s Champions walking team.
The event is informative for those who know little or nothing about ALS, she said, “and it gives people who have ALS some kind of hope, a way for people to show love for them, a way for people to gather and show support for them, and it’s a big fundraiser for the Northern New England (ALS) chapter, which provides services for patients who need equipment, and a lot of things that they might not otherwise be able to afford.”
“ALS research is not funded like cancer, it’s not funded like anything else; it’s just barely getting funded, in many ways, compared to anything else,” Cindy Churchill said.
“It’s just too rare of a disease, and it’s too fast, that it doesn’t get nearly the publicity that other things do,” her husband added.
Churchill’s Champions has set a goal of raising $10,000 for the association, and people interested in helping out can reach Cindy Churchill at 829-4570. They can also log onto alsanne.org, click on the Portland Walk to Defeat ALS link and search for Churchill’s Champions under the “donate” section.
A day at a time
Facing the terminal nature of the disease, Churchill said he wants to keep doing as much as he can do for as long as he can keep doing it.
“I want to work, and I don’t know how long I’m going to be able to do it,” he said, “or whether this medicine is working, or anything like that. So I want to stay as busy, and see as many people, as I can.”
“The first year (after the diagnosis) was very terrible,” Cindy said. “And then we just realized we had to live life a day at a time, and try to keep it as normal as possible for the kids. … You don’t know what you’re supposed to do, other than just live. … If you think about it too long, you start crying.”
She added that “it’s a scary disease to have, because you know what’s going to happen to you is not going to be pretty, and you don’t know how long it’s going to take. I feel really bad, obviously, for many personal reasons. I guess I also just feel very badly because Bruce has so much to give.”
There is some hope that the time ahead can stretch longer than the statistics show, and Bruce Churchill is counting on it. While people generally survive the disease for only a handful a years, he explained, 10 percent of victims live to 10 years. It makes every moment count.
Turning to his wife and smiling, Churchill said, “that’s where I’m going to be.”
Alex Lear can be reached at 373-9060 ext. 113 or firstname.lastname@example.org.