TOPSHAM, Maine — Frank Bennett has spent the final 5 years working his approach by means of a still-growing listing that has included shopping for a Mannequin A Ford, skydiving, a number of journeys to the Caribbean with his spouse and daughters, and proposing once more to his spouse of 46 years, Connie.
In July 2014, the Bennetts’ son-in-law helped Frank get down on one knee to suggest yet again with a particular piece of “bling” he’d picked out and positioned on the entrance seat of the Mannequin A.
“I said, ‘If we could do it all again, would you still marry me?’” he stated final week, sitting in a delicate recliner within the afternoon solar, Goldendoodle Shelby nestled alongside his leg.
A proficient woodworker, Frank honed his craft on virtually each inch of the Cathance Street farmhouse the 2 share. On a current Wednesday, he struggled to select up a bottle of Poland Spring water with his proper hand — “my left hand is useless,” he stated — and maneuver a straw to his mouth.
The magic in his fingers had been stolen by ALS, or Lou Gehrig’s Illness, a cruel, universally deadly neuromuscular illness that strikes simply over 5,000 individuals within the U.S. annually and two individuals per 100,000, in line with the ALS Affiliation.
Each six weeks, Frank, Connie and Shelby, go to neurologist Dr. John Taylor, director of the Mid Coast ALS Clinic.
In April 2014, Taylor recognized Frank with ALS. In response to Taylor, about 60 sufferers in Maine are at present recognized with ALS, which impacts the nervous system, mind, spinal twine and ultimately progresses to a affected person’s arms and legs and impedes talking, swallowing and respiration.
“Patients go from [saying], ‘My foot doesn’t work so well,’ to dying in 24 to 36 months,” Taylor stated lately.
Frank was referred to Taylor in early April 2014 after a wrestle with shoulder ache. He was 63 and getting ready to retire later that month after 31 years as a salesman for Nation Kitchen Bakeries. He’d solely ever taken one sick day, Frank stated.
Throughout his first go to with Taylor, earlier than the various exams that led to his analysis, the doctor requested Frank to take off his shirt.
“I swear he knew it right away, but he never said that,” Frank stated. “He asked if I’d been in the military, and if I’d been in Vietnam, and he mentioned Agent Orange.”
Frank served within the U.S. Military in Germany from 1970 to 1973 however hadn’t been uncovered to the nerve fuel. He later discovered that “all that time I’d been talking, I’d been twitching, and I’d never noticed it.”
Frank stated Dec. 19 that he’s positive Taylor knew after that first go to, however as an alternative of diagnosing him he advised the couple to go on their deliberate trip and that they’d “figure out what’s going on” once they returned.
On the subsequent go to, 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 stated. “I said, ‘No, you’re not.’”
“I remember leaving the office and not knowing what to do,” Frank stated. “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 lengthy after his analysis, Frank started compiling a record of issues he needed to do and to do for others earlier than his sickness obtained too extreme.
Shortly after the analysis, Frank and Connie went to Bridgton to see Goldendoodle puppies. As an alternative, they met the breeder’s personal 15-month-old Goldendoodle, Shelby, who walked over to Frank and crawled in his lap.
“She picked me,” Frank stated, then telling of 1 “bad” emotional day when he left the room as a result of he didn’t need his household to see him cry.
“She came in and licked the tears off my face,” he stated of the companion that’s now educated to accompany him to nursing houses, hospitals and docs’ workplaces.
“It’s definitely a disorder that takes an entire community to treat,” Taylor stated just lately. “[Patients] require a lot of care.”
Earlier than the clinic was obtainable, sufferers with ALS would often go to their basic practitioner or a hospital emergency room for every particular symptom.
However, Taylor stated, “bouncing in and out of the ER for respiratory distress with no cure is not going to get you any better.”
In its first yr, the clinic is the one ALS-associated clinic within the state, and attracts sufferers from throughout Maine. Taylor stated he’s starting to get referrals from Maine Medical Middle in Portland.
Whereas Massachusetts Basic Hospital and Maine Medical Middle have muscular dystrophy clinics, and Togus VA has an ALS clinic for veterans, within the years earlier than the Mid Coast clinic, Taylor stated, “We’d see a patient here and do the best we could.”
However now, on the second Friday of every month, the workforce — bodily therapist Jennifer Anderson; occupational therapist Elizabeth Hyde; speech therapist Kristin Mason; nutritionist Kylie Fagnano; social employee Grace Plummer, who focuses on palliative care; Laurie McFarren, a consultant of the Northern New England Chapter of the ALS Affiliation; and “the quarterback,” RN Sarah Savard — gathers for a pre-clinic assembly. Then every clinician sees every of six sufferers for a half-hour every over the course of a number of hours, communicates with one another by way of written notes between the visits and then meets once more after the visits to develop particular person plans for the sufferers.
Whereas the clinic can’t supply a remedy for ALS, it supplies “a coordinated treatment paradigm,” Taylor stated.
“It’s very helpful to have all the eyes and ears on the patient at the same time,” Taylor stated. “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 may need assistance transferring to a hospice, one other may want a feeding tube. If their swallowing reflex is failing, Hyde, the clinic’s occupational therapist, may monitor down a communication system.
Clinic nurse Savard has visited sufferers at their houses to assist them discover ways to use medical gear comparable to suction units and lifts. Taylor is now engaged on creating a “caregiver boot camp,” at which relations might discover ways to use a Hoya raise, the way to switch somebody to a mattress, and expose them to medical gear they could have to make use of someday.
After the clinic go to, sufferers return to dwelling their lives. One visited the Nice Wall of China, Taylor stated.
“What can we do in two to three years that could make their life better?” Taylor stated of the clinic’s aim. “This is all about quality of life.”
Whereas most ALS clinics are run by way of giant educating hospitals similar to Dartmouth-Hitchcock and the Mayo Clinic, the Mid Coast clinic is funded via Mid Coast Hospital and the ALS Affiliation, alongside with vital donations from numerous philanthropists, together with Martin Teitel of Orland, whose late spouse, Mary J. Harrington, died of ALS in 2010.
Teitel and Harrington lived in Lincoln County when she was recognized. Teitel cared for her himself as a result of his spouse was decided to remain at residence.
“The only treatment that made any difference in her life was an ALS clinic in Boston,” he stated.
Coincidentally, Teitel additionally sees Taylor for remedy of myasthenia gravis, which Taylor recognized seven years in the past within the Mid Coast Hospital ER.
“Folks were telling me to get my affairs in order,” Teitel stated lately. “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 stated Taylor confided in him on the time that his dream was to open an ALS clinic. By means of a donation to the ALS Affiliation, Teitel helped him do exactly that.
‘Sense of security’
Docs have stated the development of Bennett’s ALS has been remarkably sluggish. In reality, his next-door-neighbor was recognized and died shortly, he stated.
Now, he’s having hassle respiration, notably when he climbs the steps to the main bedroom.
“That’s going to be my demise, but right now it’s fine,” he stated Wednesday. “If I got up and went to the bathroom and came back, I’d be out of breath.”
However because of Togus, a absolutely accessible downstairs suite is almost completed. Whereas shifting into the brand new room will save him from the steps, the transfer shall be bittersweet, he stated. “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 stated. “It’ll come to you.”
In 2017, a former Brunswick Excessive Faculty classmate threw an early 50th reunion in Frank’s honor on the Tub Nation Membership. Seventy-five former classmates, from as distant as Florida, confirmed up. He was overwhelmed.
One classmate, Kathy, a good good friend in highschool who missed the reunion, has additionally stayed in contact — she and Frank speak each night time on the telephone for about an hour, Connie stated, 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 yr, Frank started to shed pounds quickly after primarily dropping his want to eat. At one level he was right down to 132 kilos, he stated.
He beforehand determined he needed no medical intervention — no tracheotomy, no feeding tube. However, he stated, “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 time throughout their dialog, Kathy stated, “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 stated. “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” concerning the tube, and inside one week, Frank was in surgical procedure having the tube put in.
“That girl (Sarah) is amazing,” Connie stated.
The “cohesiveness” of the clinic provides each Bennetts “a wonderful sense of security,” Connie stated.
“Dr. Taylor says, ‘What made you change your mind?’” Connie stated Wednesday. Frank broke into a broad smile and began to giggle as she stated, “He told him, ‘My girlfriend.’”
Frank laughs till he’s in need 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 stated.
Demise with dignity
He’s additionally develop into very involved about his proper hand. As a result of his fingers have begun to tug on the pc, the clinic employees is becoming him with a new pc operated by his eyes, he stated.
“Dr. Taylor and Dr. [Dayton] Haigney at Togus always say, ‘Don’t worry about the suffering. That’s what we’re here for,’” he stated. Nonetheless, he worries, and could be very acutely aware of that proper hand.
“We’re all dying, some at a different rate. I’m not afraid of dying. I fear the process,” he stated 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 quickly have the ability to vote on a Demise with Dignity referendum, for which proponents are amassing petition signatures.
“It is what it is,” Connie stated of the expertise — and then mirrored on her personal phrases. “When you don’t have any choice in the matter, it is what it is.”
“This is my journey,” Connie stated. “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.”