Facing illness with dignity: Local Parkinson’s disease patients unite as ‘Movers and Shakers’
BRISTOL — Mike Gray of Starksboro still recalls the day six years ago that opened a new chapter in his life. He and his wife, Debi, were driving home from a family visit in the Boston area when his right arm started experiencing tremors. He also experienced some pain in his neck and was feeling unusually fatigued.
Gray, 63, quickly went to see his physician, who referred him to a neurologist. He put Gray through some comprehensive testing, consisting mostly of physical observations and an MRI.
“He told me I had Parkinson’s disease,” Gray recalled.
He was at first understandably numbed by the diagnosis, for which he sought a second opinion that yielded the same result. He then knew he had some studying to do.
“My first reaction was, ‘This is not going to stop me,’” Gray said.
Gray is one of an estimated 15,000 to 20,000 Vermonters and 1 million Americans living with Parkinson’s disease, a progressive brain disorder with symptoms that can include tremor or trembling of the hands, arms and other body parts; stiffness; slowness of movement; speech problems; impaired balance and coordination; and dementia. It occurs when nerve cells that produce dopamine — an important chemical in the brain — die or become impaired.
Early signs of the disease can be barely noticeable, and symptoms usually begin on one side of the body, according to information provided by the American Parkinson Disease Association.
The cause of the disease is unknown. Some research theories suggest that genetic factors or environmental toxins may be involved. As scientists try to learn more about the affliction and possible cures, a new Parkinson’s disease patient is diagnosed every 9 minutes. It is an illness that tends to strike older Americans (60 and older), and Vermont is one of the grayest states in the union.
‘MOVERS AND SHAKERS’
Parkinson’s disease patients can be quite introverted about their affliction, self-conscious about public reaction to their involuntary movements. But the Grays were committed to bringing Mike’s symptoms — and those of all Parkinson’s disease patients — out into the open. They began meeting with a few other Parkinson’s disease patients at the Lincoln Library. They transitioned to the Bristol Bakery, all the while putting out poster invitations for others to join them. Knowing there were more patients in the area, the Grays mounted a serious push last December to increase the group’s ranks. They called representatives of the Mountain Health Center in Bristol, which graciously provided meeting space. The Vermont chapter of the American Parkinson Disease Association gave the couple some leads on local folks who might benefit from the Addison County group.
They coined a name for the group that epitomizes the humorous and self-deprecating nature of the county’s Parkinson’s disease patients: The Movers and Shakers. It meets the last Thursday of each month, from 10 to 11:30 a.m., at Mountain Health Center. The meetings often feature a speaker and opportunities for participants to commiserate and share their personal stories and questions. Mike Gray was pleased to report that recent group meetings have drawn as many as 19 people, including patients, family members and caregivers.
Gray and other members of the group take comfort in sharing their respective stories and helpful information at the monthly gatherings.
Gray had been a social worker (for 35 years) in the Burlington area and had always been an active person. It wasn’t too long before his retirement that Gray began experiencing chronic pain in various parts of his body.
“I went to pain doctors, kept getting shots, but they couldn’t really find anything,” Gray recalled.
He coped with the pain, until an incident on the road prompted him to become more inquisitive about his health.
“Other than hearing about Michael J. Fox and Muhammad Ali, I had never really thought about Parkinson’s disease,” he said, referring to two celebrity patients who have brought more attention to the disease.
Gray was quickly put on a medication — Sinemet — to control his pain and depression and relieve his involuntary movements. He is learning how to address his tremors, which tend to strike when he is stationary. Prior to going on medicine, he would sit in a chair and his involuntary movements would cause the chair to shift. He has virtually no symptoms when he is active.
“If you don’t move, you get stuck,” Gray said. “You will stay in your chair forever.”
And Gray will keep on moving.
“It’s a daily contest over who is going to win,” he said. “I can’t skip a day of walking.”
And he is determined to stay one step ahead of Parkinson’s disease, though he wants to remain realistic about the challenge he is confronting.
“If you fight this all the time, you’re just going to be mad all the time, because this is a big opponent,” Gray said, echoing words from Muhammad Ali. “In some ways, it’s making peace with it and living as well as you can.”
Parkinson’s disease has done more than force Gray to move involuntarily; it has also robbed him of some of his powers of expression. The disease is preventing him from controlling the muscles in his face.
“I would walk by and look at myself in the mirror and ask, ‘Am I having dental problems?’” he said. “I looked mad. It’s hard for me to smile … My face is kind of frozen. In the morning, I have to stretch my face so I can smile.”
Mike’s wife, Debi, has been with him every step of the way.
“When people are diagnosed with Parkinson’s disease, they often feel isolated,” she said. “Having a group gives people a place to go for information and resources, and bond with other people and gain strength, so they can get up and face this every day.”
A NEW NORMAL
Ripton resident Lindi Bortney still remembers the day on which she was delivered the news that would change — but not dominate — her life. It was May 2, 2013, that a physician confirmed what she had suspected — that she had Parkinson’s disease. But she didn’t really need that diagnosis to realize her body had been going through changes. It was around 20 years ago that she lost her sense of smell. Bortney — whose mom had lived with Parkinson’s — recognized it as one of the 10 warning signs of the disease.
“I looked at (Jerry Shedd, her husband) and said, ‘I’ve got eight of these signs,’” she recalled. “It’s pretty unusual.”
But Bortney, now 70, knew something was really wrong one evening around four years ago, when she took her usual spot as conductor of the Maiden Vermont women’s barbershop chorus.
“My hands were not doing what I was telling them to do,” she said. “It scared me. I came home in tears and said, ‘Something’s wrong.’”
A neurologist initially told Bortney she had neuropathy. But a neurologist specializing in Parkinson’s disease ultimately confirmed her true diagnosis, according to Bortney.
She has maintained a positive outlook thanks to the love and support from family and colleagues with Maiden Vermont.
“They have my back,” she said of her fellow singers.
While her conducting pattern has gotten smaller, she is still able to keep the Maiden Vermont group on task and in wonderful harmony.
“Their attentiveness to my conducting has improved immensely,” Bortney said. “They all kind of lean forward to see what I’m doing.”
Still, she knows that each day can bring new challenges for those living with Parkinson’s disease.
“When I go to a concert I wonder, will I be able to do it tonight, or will I have a ‘new normal?’” she said.
She explained the constant need for Parkinson’s disease patients to adjust:
“We’re all handed something that we need to deal with at different times, and this is what this group has been handed, and it’s unpredictable,” Bortney said. “Everyone has their own course that they take; no two people have the same journey. We look at it as, every day is the ‘new normal.’”
Bortney’s closest friend is dying of terminal brain cancer in Long Island, N.Y. So she knows that as much of a challenge she faces, there are many who are in more dire straits.
“I tell myself, ‘I can do this,’” Bortney said. “It’s a setback and it’s challenging at times, but we can handle this.”
Bortney and other Parkinson’s disease patients are dealing with their setback with dignity, resourcefulness and a lot of hard work. There’s exercise, staying faithful to medication and therapy regimens and some basic adjustments to keep everyday tasks within the grasp of hands that are suddenly prone to shaking. Those adjustments include replacing shirt buttons with Velcro and ordering soup in a cup, instead of a bowl.
“These are things that we share,” said Bortney.
Bill Durfee, 78, has been a Movers and Shakers regular. The Middlebury resident was diagnosed with the disease around 10 years ago.
“The majority of us don’t acknowledge we have it until it gets worse,” said Durfee, who confessed to ignoring his symptoms until he went for a regular check-up and the physician said, “How come your hand is shaking so much?”
He had chalked some of his symptoms up to advancing age, but now had to acknowledge that something more was amiss.
“Everything is slower and more difficult,” Durfee said of the effects of Parkinson’s disease. All of a sudden, he noted, it’s a chore to butter one’s toast, button a shirt and tie shoelaces.
Durfee brings a keen sense of humor to the conquest of his new challenges.
“I joke that I no longer play golf, but I still show up at the first tee,” Durfee said with a smile. “One thing positive I say about Parkinson’s is, it’s a lot easier to brush your teeth.”
Dan Morse of New Haven, was diagnosed with Parkinson’s disease on his 44th birthday. He’s a mechanic, and noticed that his arms were not functioning as they had been. He went for some physical therapy, but his body wasn’t responding. That’s when he was referred to a neurologist, who confirmed his diagnosis. Morse had to retire in June, and is now focused on exercising, eating right and doing other things to optimize his quality of life.
“Good habits are hard to create and bad habits are hard to break,” he said of adopting a good regimen. “When you get Parkinson’s disease, you’ve got to make a decision to take time for yourself, if you want to continue with a reasonably good life.”
Morse does a lot of his exercising daily on a Theracycle — picture a stationary bike with handlebars that move in synch with pedaling. This, and an electric motor, help the rider if his or her legs are not working at top form. He hopes that one or more area gyms might offer a couple of Theracycles to assist locals who have impaired mobility.
“If you don’t feel like pedaling, it pedals you,” Morse said of the theracycle. “It gets your blood flowing.”
Charlotte Anderson is program coordinator for the Frederick C. Binter Center for Parkinson’s Disease & Movement Disorders at the University of Vermont Medical Center. The Binter Center, made possible through a large donation, was launched a few years ago to provide integrated, team-based care for patients with movement disorders. The center provides a host of programs to help those living with Parkinson’s disease, ranging from social work and counseling to deep brain stimulation, a surgical option through which wires are implanted into the brain to electrically change the abnormal activity.
The center, directed by Dr. James Boyd, also offers periodic clinical trials of new medications and therapies that could someday unlock a cure for Parkinson’s disease.
Anderson noted that patients seek out the Binter Center as a one-stop location for virtually all their needs related to their particular movement disorder. The center serves approximately 600 people with Parkinson’s disease.
“(Patients) can see a physical therapist, and occupational therapist, a neurologist and a social worker, all in one day,” Anderson said.
The center also has a complement of certified trainers in the “Big and Loud Therapy Program.” This is a program that uses various exercises to help Parkinson’s disease patients increase their range of movement and speech therapies to help patients speak more clearly and with greater amplification.
Anderson added the Binter Center is planning a symposium next fall for therapists who work with patients with movement disorders.
In addition to being an administrator at the Binter Center, Anderson has a personal connection to Parkinson’s disease. Her dad was diagnosed with the disease around a month after Anderson accepted her job at Binter.
“It has been pretty amazing for me to be a resource for him,” she said of her dad, who is 66, and is currently able to continue his pace of running long distances.
Anderson meets with a lot of Parkinson’s disease patients every week.
“Everyone I talk to has the same frustration,” she said. “(The disease) interrupts your life in ways you didn’t expect.”
Most of the patients Anderson encounters are remarkably resilient and positive.
“They aren’t defined by Parkinson’s disease, and I think that’s great,” she said. “They say, ‘I’m going to keep on doing what I’m doing and will keep working around this until I can’t.’”
Optimism is key, and Gray has a lot of it.
“The research is getting better and the treatment is getting better,” Gray said. “It’s a very hopeful time.”
Gray’s overarching message to those living with Parkinson’s disease: “Don’t be ashamed. We know people who feel they can’t go out in public, and I don’t feel that way at all.”
Reporter John Flowers is at [email protected].
See “Parkinson’s resources, nearby and on the web” to learn more about Addison County and national resources for learning about Parkinson’s and coping with the disease.