It’s Parkinson’s disease, says your doctor. You choke on disbelief and fear. You’re 50, maybe 65. There are no blood tests, no tissue samples to verify this news. Diagnosis is based on similar symptoms in hundreds of thousands of cases.
At home, you sit down at your computer and type P-A-R-K-I-N, then stop. You feel cold, hot, shaky. You decide not read about this progressive neurological disease that produces tremors, falls, stiff limbs and steals mobility and independence. Months, maybe a few years pass. You’ve been keeping your doctor’s appointments, done a little research. Still, you’re irritable, depressed, no longer able to hide some of your symptoms. The isolation you feel is like a silent scream. It’s time to do something. Maybe a support group would help.
With 60,000 new cases of Parkinson’s diagnosed every year, this scene is played out time and time again. Today it is easy to find good information and caring people to help you mange the initial shock as well as the disease. It hasn’t always been this way.
In the mid- 1990’s, a couple from Rockport, Maine, were overwhelmed by their diagnosis and distressed that they couldn’t find help in their area. They had no choice but to start their own support group because no one was going to do it for them.
It all started with some chairs.
Jim Brown is a furniture designer and the owner of Windsor Chairmakers in Lincolnville, Maine. Ten minutes before 5 on a Saturday afternoon in 1995, a prospective customer from Atlanta, Georgia walked in. Nance was a pediatric critical care nurse who had driven up from a meeting in Boston. She wanted to buy some heirloom custom chairs. Jim, who cocks his head to one side while looking directly at you, was on his way out of the shop to make a delivery.
It was instant mutual attraction.
Within six months Nance had retired from nursing and moved to Maine to help Jim manage the business. They bought a home in Rockport and were married in the fall of 1996, the same year Jim was diagnosed.
“Parkinson’s was with us when we married. I never once considered it a reason not to get married,” said Nance.
For the next few years, Jim and Nance, who were both 52 at the time, tried, without much success, to find information that would explain what they might expect as they tried to manage their day-to-day medical, physical and emotional symptoms. When Nance was caring for desperately sick children, she had often suggested that parents consider a support group so they wouldn’t feel alone and frightened. Now she and Jim needed support.
“There were no resources, not even a support group in this community to help people like us,” said Nance.
Eventually they started their own, one that would include caregivers. Jim was the facilitator for those with Parkinson’s and Nance for the caregivers. News of the group’s existence spread; people called day and night, terrified of their diagnosis and desperate for information.
The Browns and others struggling with Parkinson’s took turns organizing meetings for almost a year. They met in various locations in the Camden area, and with an ever-increasing number of attendees. When it became clear that they needed a permanent meeting space, Jim contacted Suzanne Miller, health services coordinator at the Quarry Hill Retirement Community.
“Jim was very convincing, and he was right,” said Suzanne.
The group’s request for space for a monthly meeting fit perfectly into Quarry Hill’s mission to serve its residents and the broader community. Most of the members of the support group come from Mid-coast Maine communities. Suzanne also offered to help with administrative needs and to become one of its facilitators.
“Our group owes our very existence to Suzanne, who understood our needs from the moment Jim first met her. She continues to nurture our efforts to help each person,” said Nance.
Two other couples, Robin and Gordie Guist and Don and Ann Cole became very active in the group. The fact that Jim, Don and Gordie developed Parkinson’s in their late 40’s—called early onset—explains why these three couples had the energy and the motivation to help launch this group. They expect to be living with Parkinson’s for a long time and wanted their group to sustain them during their entire life. Whether people are diagnosed early or in their 60’s, Parkinson’s may be part of their lives for 10, 20 or 30 years. People want a support group that will meet their needs as they age and as their symptoms progress.
The first meeting was in September 2004.
In the beginning, the meetings and discussions focused on helping each other reduce the fear and panic brought on by their diagnosis. Some found it very difficult to accept that they had Parkinson’s and some spouses worried that they wouldn’t be able to handle the caregiving that would likely be required as the disease progressed.
“It took some time for the group dynamic to emerge and for the participants to develop enough self confidence and trust to open up,” said Suzanne. “As soon as people realized they weren’t alone in dealing with Parkinson’s they began to feel better and more in control.”
Now, most of those who have been in the group since the beginning are more confident of their ability to handle the uncertainties of their disease as it progresses.
From time to time during the early years of this group’s existence, the members would step back and ask themselves: “What do we want from our support group?” Their answers would become the group’s mission: To be a sanctuary of support and a source of information for those with Parkinson’s, their families, friends and caregivers.
Today their meetings are all about building personal resilience.
The group meets at noon on the first Tuesday of every month in the Media Room at the Anderson Inn at Quarry Hill for about two hours. Long enough to be substantive but not so long that people lose interest, or that their medications wear off. Their meeting room, with its comfortable, padded chairs, carpet and soft lights, encourages conversation and relaxation. It’s also set up for audio visual presentations. Some people bring lunch, coffee, water and desserts are provided. Meetings are informal, there are no officers.
“We are all equal in our desire to find ways to live with Parkinson’s” said Gordie. Guest speakers, discussions and support sessions are the tools they use to become more resilient — better able to bounce back from the setbacks and adversity likely to come their way over the long haul.
The first half of each meeting includes a speaker on a subject related to Parkinson’s, followed by a question and answer period. Members of the group offer suggestions for topics and speakers and Suzanne extends the invitation and handles the administrative duties. Experts have talked about Parkinson’s medications, nutrition, depression, and voice and speech issues that are common with this disease.
Other speakers have suggested that art, poetry and spirituality might be helpful in easing the burden of Parkinson’s. There have been demonstrations of yoga, dance, Tai Chi and other exercises that can help increase the flexibility that Parkinson’s takes away. Programs and activities like these help reduce stress, boost the immune system, and contribute to a sense of peace and wellbeing.
The second part of each meeting is dedicated to separate and concurrent support sessions, one for those with Parkinson’s and one for caregivers. This is the time for sharing experiences, learning from and helping each other. People listen with a knowing ear when someone vents or describes emotional pain, or thinks out loud giving voice to whatever is on his or her mind.
“These are safe places where we can talk with those in our similar situation,” said Don Cole. Another said, “It’s where we can express how we feel — frightened, sad, angry, uncertain — and know that others will understand.”
“Support sessions are vital to building individual and family resilience,” said David Rintell, Ed.D, psychologist at Brigham and Women’s Hospital and Massachusetts General Hospital, in a recent email. Rintell was the keynote speaker at the Maine Parkinson’s Society meeting in 2009.
“Resilience was once considered something we were born with, but research has shown that it is learned and developed through practice. Managing difficulties successfully provides the emotional confidence to withstand future setbacks,” said Rintell.
The facilitator guides the support session with a delicate touch.
Sometimes those with Parkinson’s, most of whom are men in the group and the general population, need a little encouragement.
“It’s not always easy for men to open up,” said Carol Witham, a facilitator and a certified advanced health and fitness specialist. “Sometimes there are periods of silence between comments because it takes time to process information and to formulate a response. For some, it’s difficult to shift quickly from one topic to another.”
During this time folks talk about their difficulties walking, swallowing, and speaking due to the loss of voice muscles. One person talked about his feelings of inadequacy when he had to relinquish the management of the family’s finances. Depression is a frequent topic—it affects more than 30% of those with Parkinson’s. Gordie went into a deep depression right after his diagnosis and resisted help for months.
When one man said he felt awful asking for so much help— to get out of bed, dress, cut up his food—everyone nodded in agreement. One man shared his pain giving up driving, others talk about sleeping issues. They exchange information about their successes and failures with various medications.
Sometimes someone offers an idea or suggestion, but mostly people listen because they all know that verbalizing a fear or concern is the first step in managing it.
Caregivers usually want to talk about the person they care for.
Suzanne, their facilitator, starts this support session by asking the caregivers, most of whom are women, “How are YOU doing?” But everyone automatically talks about problems their spouse is having. Suzanne lets this go on for a few minutes then reminds the caregivers that this time is for them. Then people begin to open up and talk about their loneliness, stress, the 24/7 demands of being the one responsible for someone with Parkinson’s.
Nance said, “These meetings allow me to release some steam. If something’s a big problem for me, it is usually something we’re all dealing with.”
They share their worries that their spouses might fall, forget to take their medications, and the depression. They share tips for organizing the piles of information related to medications, doses and side effects Caregivers urge each other to become advocates for their spouses, attend doctors’ appointments, ask questions and keep notes. They exchange recipes for foods that are easy to prepare and to eat because there’s always the fear of choking.
“There’s no relief when you’re the caregiver,” said Robin. “When Gordie’s medications kick in, he gets a break and he seems almost normal. There is no break for me,” she said without self -pity or resentment.
The facilitator reminds caregivers to acknowledge their own needs — a haircut, a trip to the library, a massage — and urges everyone to get someone to help so that they can get out for a few hours. Without a break, their reservoir of patience and love will run dry, leading to depression.
Caregivers are honored in a special way
Those with Parkinson’s are painfully aware of the strain it puts on the people who care for them. So every year the February meeting is a celebration, a Valentine’s Day tribute to caregivers. This event was Gordie’s idea and he loves being master of ceremonies. As he makes his way to the front of the room you notice that his trim body appears a bit stiff, his walk is uneven, his left arm shakes. Gordie isn’t thinking about Parkinson’s; he’s eager to speak.
“It’s difficult enough to live with Parkinson’s when you’re the one with the disease,” said Gordie. “ Our spouses, children and friends—those who make sure we take our meds, get exercise, prepare meals, help us in and out of bed, and worry about our well-being—carry a heavy burden, too. Thank you caregivers, this day is for you.”
Each caregiver is presented with a long-stemmed red rose and escorted to another room where Zen music, the relaxing scent of lavender and therapists wait to give neck, back and foot massages. Despite being consumed with their Parkinson’s, these folks haven’t forgotten their caregivers.
Hope thrives in this community.
Everything this group does—the speakers, discussions, exercise classes, dance, yoga, the art, poetry, the celebrations and the support sessions—is designed to help people become stronger, more resourceful and better able to withstand the vicissitudes of living with Parkinson’s.
It is on this foundation that resilience can take hold and grow. The moment when resilience emerges as hope is a little like the moment of sunrise; you don’t know exactly when it happens, but slowly you realize it’s a new day.
The men and women in this support group are a testament to the fact that the best antidote to Parkinson’s is peer support. They are a curious blend of ages — 45 to 80 —and backgrounds, people who under different circumstances might never have known each other. Though they are burdened with symptoms, they are not defined by them. It doesn’t matter that some can’t stand up straight, stand still, or speak loudly. Some can’t smile because their facial muscles are locked, but they share their warmth though their eyes and they know how to laugh.
At one meeting, Jim Brown explained his tardiness.
“The police called to tell me that my heifers were walking along Route 1 near my shop in Lincolnville, and I had to get them out of the road.” Jim, who is very slender and whose Parkinson’s forces him to list to one side when he walks, explained how he did it. “I put a rope on each heifer, put one on each side of me, and walked them home. I also scolded them for busting out of their pen again and for being such bad girls.”
I asked Jim if anyone stopped to help him. “Would you?” he asked. “They weigh 1500 pound each.”
Now they reach out to others.
The Quarry Hill Support group, which started as a gathering of people who were trying to find ways to manage their fears and uncertainties, now has an ongoing commitment to helping others. They’ve created their own newsletter, developed a mobile lending library of information and established the annual Camden, Maine, Parkinson’s Resource and Information Forum held in April, National Parkinson’s Awareness Month. It’s an afternoon event for those in the community who are newly diagnosed and others who want to know more about the disease and local services. Speakers usually include a neurologist, the facilitators and some of the members of the support group.
Others are getting involved on a national level. Gordie is one of 100 people — and the only one in Maine — who has been designated an Advocate for Parkinson’s Research by the Parkinson’s Disease Foundation’s Clinical Research Learning Institute. His role is to help find volunteers to participate in studies being conducted by all researchers and all drug manufacturers who are trying to find better treatments for Parkinson’s.
Because of the richness of the monthly programs, membership has grown steadily. Today as many as 30-45 people attend each meeting, with new people joining every few months. Some are understandably hesitant. Not everyone is comfortable being part of a support group, especially those who diagnosis is recent, who may have only a few visible symptoms, or who are struggling with denial.
“It’s extremely difficult for some to sit in a group with others whose symptoms are more advanced and to think that you might look or act like they do in 10 or fifteen years,” said Suzanne.
When new people — those with Parkinson’s or caregivers — come to a meeting they’re welcomed and introduced, only if they wish to be.
“We’ve been there,” said Jim Brown. “We give each person as much space as they need. We want them to feel comfortable, we answer the questions we’re asked, and we don’t push anything.”
Until there’s a cure, this group will continue to be a touchstone.
Those with Parkinson’s and their caregivers come to each meeting with a few seeds of hope for making their lives a little easier. These seeds are planted and nourished by sharing experiences and learning new ways to cope. At the end of each meeting, people leave feeling better and more hopeful. Hope gives everyone the feeling they have some control over their lives, and makes them more resilient. Hope is what everyone takes home, and hope is what draws them back together month after month.
“We are individuals who share a common bond,” said one member.
“We share everything without fear of being judged. Over the years we’ve seen people get though the rough times that Parkinson’s throws at us. We’ve seen a change in people’s attitudes from fighting the disease to accepting it and getting on with life,” said another.
“When you go to the doctor you don’t get cookies and desserts,” said Gordie. “When you come to our meeting you are treated to desserts and cared for by friends. These are the most generous people I’ve ever met.”
Today there are approximately 15 communities of hope in Maine where those newly diagnosed and/ or ready for a group will find a support network of caring and resourceful people and a wide variety of activities that can make it much easier to live with Parkinson’s. For information about support groups in your area, call Lillian Sienna at 207-781-1735 or 866-609-5183 or check the American Parkinson’s Disease Association Information and Referral Center website: www.mainehealth.org/parkinsonsmaine.
ABOUT PARKINSON’S DISEASE
Parkinson’s is the result of the loss of nerve cells in the substantia nigra of the brain, the area that produces dopamine. Dopamine transmits messages from nerve to nerve to coordinate the body’s movements. Without enough dopamine, the cells fire randomly, usually producing tremors, uncontrollable shaking, sluggish movements and rigid muscles. These symptoms may make it appear that the person may be mentally challenged or impaired by drugs. When the facial muscles are affected it’s difficult to smile, laugh, wink or cry. The face may appear expressionless, like a mask. Family and friends must learn to “read” the eyes to discern emotions and feelings.
There’s no known cause in most cases, but in some it is genetic
Every case is different. Some people have a variety of symptoms, others only a few. Several different kinds of medications are available, but one that works for one person might be useless for another. And many produce intolerable side effects. The disease progresses rapidly for some and not for others. But it always progresses. There’s no such thing as a remission. Parkinson’s can, over time, affect a person’s ability to move, speak, swallow, breathe deeply, smell, and can cause depression. People don’t die of Parkinson’s but they can die from complications, such as pneumonia, that can develop due to reduced ability to swallow. Healthcare professionals and those with the disease agree that peer support can be an effective, ongoing antidote to this grimness.