TOPSHAM, Maine — Frank Bennett has spent the last five years working his way through a still-growing list that has included buying a Model A Ford, skydiving, multiple trips to the Caribbean with his wife and daughters, and proposing again to his wife of 46 years, Connie.
In July 2014, the Bennetts’ son-in-law helped Frank get down on one knee to propose all over again with a special piece of “bling” he’d picked out and placed on the front seat of the Model A.
“I said, ‘If we could do it all again, would you still marry me?’” he said last week, sitting in a soft recliner in the afternoon sun, Goldendoodle Shelby nestled alongside his leg.
A proficient woodworker, Frank honed his craft on almost every inch of the Cathance Road farmhouse the two share. On a recent Wednesday, he struggled to pick up a bottle of Poland Spring water with his right hand — “my left hand is useless,” he said — and maneuver a straw to his mouth.
The magic in his fingers had been stolen by ALS, or Lou Gehrig’s Disease, a merciless, universally fatal neuromuscular disease that strikes just over 5,000 people in the U.S. each year and two people per 100,000, according to the ALS Association.
Every six weeks, Frank, Connie and Shelby, visit neurologist Dr. John Taylor, director of the Mid Coast ALS Clinic.
In April 2014, Taylor diagnosed Frank with ALS. According to Taylor, about 60 patients in Maine are currently diagnosed with ALS, which affects the nervous system, brain, spinal cord and eventually progresses to a patient’s arms and legs and impedes speaking, swallowing and breathing.
“Patients go from [saying], ‘My foot doesn’t work so well,’ to dying in 24 to 36 months,” Taylor said recently.
Frank was referred to Taylor in early April 2014 after a struggle with shoulder pain. He was 63 and preparing to retire later that month after 31 years as a salesman for Country Kitchen Bakeries. He’d only ever taken one sick day, Frank said.
During his first visit with Taylor, before the many tests that led to his diagnosis, the doctor asked Frank to take off his shirt.
“I swear he knew it right away, but he never said that,” Frank said. “He asked if I’d been in the military, and if I’d been in Vietnam, and he mentioned Agent Orange.”
Frank served in the U.S. Army in Germany from 1970 to 1973 but hadn’t been exposed to Agent Orange, a herbicide that U.S. forces used extensively in Vietnam and which was later determined to cause health problems to many who were exposed to it. He later learned that “all that time I’d been talking, I’d been twitching, and I’d never noticed it.”
Frank said Dec. 19 that he’s sure Taylor knew after that first visit, but instead of diagnosing him he told the couple to go on their planned vacation and that they’d “figure out what’s going on” when they returned.
At the next visit, Taylor gave him his prognosis: “Two to seven years,” Frank remembered on Wednesday.
“I remember we left there and you said, ‘I’m canceling my four-wheeler,’” Connie said. “I said, ‘No, you’re not.’”
“I remember leaving the office and not knowing what to do,” Frank said. “I never looked it up on the internet. Everybody said they had an article for me to read. … I still haven’t looked it up or read books or pamphlets. I knew what the final results were going to be. I figured I would live day by day.”
‘A lot of care’
Not long after his diagnosis, Frank began compiling a list of things he wanted to do and to do for others before his illness got too severe.
Shortly after the diagnosis, Frank and Connie went to Bridgton to see Goldendoodle puppies. Instead, they met the breeder’s own 15-month-old Goldendoodle, Shelby, who walked over to Frank and crawled in his lap.
“She picked me,” Frank said, then telling of one “bad” emotional day when he left the room because he didn’t want his family to see him cry.
“She came in and licked the tears off my face,” he said of the companion that is now trained to accompany him to nursing homes, hospitals and doctors’ offices.
“It’s definitely a disorder that takes an entire community to treat,” Taylor said recently. “[Patients] require a lot of care.”
Before the clinic was available, patients with ALS would frequently visit their general practitioner or a hospital emergency room for each specific symptom.
But, Taylor said, “bouncing in and out of the ER for respiratory distress with no cure is not going to get you any better.”
In its first year, the clinic is the only ALS-associated clinic in the state, and draws patients from all over Maine. Taylor said he’s beginning to get referrals from Maine Medical Center in Portland.
While Massachusetts General Hospital and Maine Medical Center have muscular dystrophy clinics, and Togus VA has an ALS clinic for veterans, in the years before the Mid Coast clinic, Taylor said, “We’d see a patient here and do the best we could.”
But now, on the second Friday of each month, the team — physical therapist Jennifer Anderson; occupational therapist Elizabeth Hyde; speech therapist Kristin Mason; nutritionist Kylie Fagnano; social worker Grace Plummer, who specializes in palliative care; Laurie McFarren, a representative of the Northern New England Chapter of the ALS Association; and “the quarterback,” RN Sarah Savard — gathers for a pre-clinic meeting. Then each clinician sees each of six patients for a half-hour each over the course of several hours, communicates with each other via written notes between the visits and then meets again after the visits to develop individual plans for the patients.
While the clinic can’t offer a cure for ALS, it provides “a coordinated treatment paradigm,” Taylor said.
“It’s very helpful to have all the eyes and ears on the patient at the same time,” Taylor said. “We’re all rowing the boat in the same direction. Otherwise it would all be separate appointments with people who have never seen ALS before.”
One might need help transferring to a hospice, another might need a feeding tube. If their swallowing reflex is failing, Hyde, the clinic’s occupational therapist, might track down a communication device.
Clinic nurse Savard has visited patients at their homes to help them learn how to use medical equipment such as suction devices and lifts. Taylor is now working on creating a “caregiver boot camp,” at which family members could learn how to use a Hoya lift, how to transfer someone to a bed, and expose them to medical equipment they may have to use one day.
After the clinic visit, patients return to living their lives. One visited the Great Wall of China, Taylor said.
“What can we do in two to three years that could make their life better?” Taylor said of the clinic’s goal. “This is all about quality of life.”
While most ALS clinics are run through large teaching hospitals such as Dartmouth-Hitchcock and the Mayo Clinic, the Mid Coast clinic is funded through Mid Coast Hospital and the ALS Association, along with significant donations from various philanthropists, including Martin Teitel of Orland, whose late wife, Mary J. Harrington, died of ALS in 2010.
Teitel and Harrington lived in Lincoln County when she was diagnosed. Teitel cared for her himself because his wife was determined to stay at home.
“The only treatment that made any difference in her life was an ALS clinic in Boston,” he said.
Coincidentally, Teitel also sees Taylor for treatment of myasthenia gravis, which Taylor diagnosed seven years ago in the Mid Coast Hospital ER.
“Folks were telling me to get my affairs in order,” Teitel said recently. “No one could figure out what was killing me. Dr. Taylor showed up and, seriously, within an hour I was able to walk and breathe on my own, because he correctly diagnosed me with myasthenia gravis.”
Teitel said Taylor confided in him at the time that his dream was to open an ALS clinic. Through a donation to the ALS Association, Teitel helped him do just that.
‘Sense of security’
Doctors have said the progression of Bennett’s ALS has been remarkably slow. In fact, his next-door-neighbor was diagnosed and died quickly, he said.
Now, he’s having trouble breathing, particularly when he climbs the stairs to the master bedroom.
“That’s going to be my demise, but right now it’s fine,” he said Wednesday. “If I got up and went to the bathroom and came back, I’d be out of breath.”
But thanks to Togus, a fully accessible downstairs suite is nearly finished. While moving into the new room will save him from the stairs, the move will be bittersweet, he said. “It’s just another step in the process.”
“If I could suggest to anybody who has or is diagnosed with ALS, if there’s any way possible, try to block it out,” he said. “It’ll come to you.”
In 2017, a former Brunswick High School classmate threw an early 50th reunion in Frank’s honor at the Bath Country Club. Seventy-five former classmates, from as far away as Florida, showed up. He was overwhelmed.
One classmate, Kathy, a good friend in high school who missed the reunion, has also stayed in touch — she and Frank talk every night on the phone for about an hour, Connie said, smiling. “I get time to myself to watch my Netflix and he’s always in a good mood when he gets off the phone.”
Earlier this year, Frank began to lose weight rapidly after essentially losing his desire to eat. At one point he was down to 132 pounds, he said.
He previously decided he wanted no medical intervention — no tracheotomy, no feeding tube. But, he said, “Dr. Taylor had been after me for about a year to have a [feeding] tube put in. … Dr. Taylor had been telling me that the timeframe to have one put in was getting shorter and shorter.”
One night during their conversation, Kathy said, “I know you don’t want to prolong what’s going to happen, but the biggest favor I have for you is to at least consider a feeding tube,” Frank said. “I thought about it and the next day, I called Celeste (Moreau, the manager of the neurology practice) and told her I’d changed my mind. As she’s talking to me on the phone, she was knocking on Sarah (Savard, the clinic RN) window” about the tube, and within one week, Frank was in surgery having the tube installed.
“That girl (Sarah) is amazing,” Connie said.
The “cohesiveness” of the clinic gives both Bennetts “a wonderful sense of security,” Connie said.
“Dr. Taylor says, ‘What made you change your mind?’” Connie said Wednesday. Frank broke into a broad smile and started to laugh as she said, “He told him, ‘My girlfriend.’”
Frank laughs until he’s short of breath, stops for a minute, and then smiles a quieter smile.
“I’ve reached a point where it’s hard to think of anything to top [what I’ve already done],” he said.
Death with dignity
He’s also become very concerned about his right hand. Because his fingers have begun to drag on the computer, the clinic staff is fitting him with a new computer operated by his eyes, he said.
“Dr. Taylor and Dr. [Dayton] Haigney at Togus always say, ‘Don’t worry about the suffering. That’s what we’re here for,’” he said. Still, he worries, and is very conscious of that right hand.
“We’re all dying, some at a different rate. I’m not afraid of dying. I fear the process,” he said quietly. “And my caregivers and family — what they have to see and go through. That bothers me the most. I want people to remember me the way I used to be.”
Frank hopes Mainers will soon be able to vote on a Death with Dignity referendum, for which proponents are collecting petition signatures.
“It is what it is,” Connie said of the experience — and then reflected on her own words. “When you don’t have any choice in the matter, it is what it is.”
“This is my journey,” Connie said. “You don’t get to pick. As long as he’s here and I can talk to him and I can give him a hard time … he’s been very, very, very courageous.”