Through the Local Hero Award and Moments of Victory® stories, the Davis Phinney Foundation recognizes those people with Parkinson’s and their caregivers who are inspirations to others in their communities and are determined to celebrate the moments of victory in their lives.
These individuals are proof positive that people with Parkinson’s can live rich, full lives – sometimes even opening up new opportunities and experiencing joys they had never imagined possible before their diagnosis. We know that there are many more stories as inspiring as the ones shared here, lived out daily across the country by people with Parkinson’s – people like you. As you read this manual and work with your healthcare team, consider this: how will you choose to live well with Parkinson’s?
Tom O’Donnell & Rick Lipka: Western NY Local Heroes
Tom O’Donnell and Rick Lipka are not only motivational to their local Parkinson’s community, but they are considered to many to be local “super heroes.” Affectionately referred to as “Batman and Robin,” Tom and Rick have been inspiring their local Parkinson’s community for many years.
Tom, who was diagnosed with Young-Onset Parkinson’s in 1988 at the age of 26, has
been a pioneer for Parkinson’s in the Buffalo community. He is the co-founder of the
National Parkinson Foundation of Western New York (NPF, formerly Parkinson’s Wellness Group of WNY), works tirelessly to organize fundraisers and events for the community and, noticing a need for Parkinson’s support in the area, started a local support group along with Pat Weigel of University at Buffalo. During its first year, the support group consisted of 18 members and has grown to a mailing list of over 1,000 people.
Newly diagnosed in 1998, Rick was encouraged to attend one of these support group meetings, where Tom and Rick first met. “I walked in,” Rick recalls, “and Tom was giving a presentation on electric brain surgery. I saw many people farther along in the disease than me and I turned around and left.”
Immediately after returning home, Rick’s phone rang. “I saw tears in his eyes,” Tom
recounts, “and I called to tell him it’s not like that. You have a long journey ahead of
you. And we have never looked back since.”
Since that time, Tom and Rick have ceaselessly devoted their energy to their Parkinson’s
community, both through their work with NPF Western New York, where Rick has served as President and Tom as Vice-President, and by making house calls together to people struggling with their diagnosis. “We saw a need,” Rick says, “you would see people standing at the door of a support group…. We felt by visiting, bringing information and sharing our experiences as people with Parkinson’s, we could shed a lot of light.”
Tom and Rick encourage individuals to stay active and engage in their favorite hobbies
and will even provide adaptive tools to assist people who are discouraged by their
symptoms. Both Tom and Rick remain active in the community, coaching high school
football and volunteering as a Facilities Manager at a local church, respectively.
“We tell people to smile,” Tom says. “Smile and tell yourself you have a whole day and
Parkinson’s isn’t going to win. You don’t belong to Parkinson’s.”
Carl Ames: Phoenix Local Hero
Diagnosed with Parkinson’s in 2008 at age 46, Carl Ames of Peoria, Arizona refuses to let the effects of the disease keep him from living life to the fullest and encouraging others to do the same. A father of five and grandfather of two, Carl believes in living well by staying healthy, a regimen that for him involves a strong commitment to exercise, positivity and helping everyone he can along the way.
Exercise has become essential in Carl’s daily life with Parkinson’s. He credits the Pedal
Over Parkinson’s (POP’S) Ride with helping him discover cycling. “I quickly learned that
being active gave me temporary respite from Parkinson’s,” Carl explains. “When I was
riding or moving, I didn’t feel like I had anything wrong with me.” Connecting with POP’s
Ride soon opened up other exercise opportunities for Carl. He has since participated in a
variety of cycling events around Arizona, sprint triathlons, and completed a 78-mile
cycling ride in the Colorado Rockies with his son this past summer.
A positive and open attitude is another key component for Carl. “I’m surrounded by
positive people that want to do good, which helps me to be involved and embrace
everything that’s good about Parkinson’s, and to do what I can to help others,” he says.
Since his diagnosis, Carl has created or found many opportunities for help support his
community. Carl has founded a non-profit with a friend dedicated to providing bicycles,
helmets and basketballs to underprivileged youth, serves on the board of the National
Parkinson Foundation Arizona Chapter, organized a “Peddling Pancakes for Parkinson’s”
fundraising breakfast, leads a Young-Onset Parkinson’s support group, continues to cycle
around the city and has learned that “strangers are not strangers.”
Many commend Carl’s “infectious attitude,” and his view that adversity is simply an
opportunity to educate people about Parkinson’s and living life to the fullest. “I’ve
learned how important it is to take advantage of a humbling situation, someone opening
a door or walking me to my car,” Carl maintains. “You never know how you might help
someone else.” Carl’s friend and fellow person living with Parkinson’s, Brian Baehr adds,
“anytime I am with Carl he finds an opportunity to help someone up who is down with
some form of setback. These people Carl touches are not just people with Parkinson’s,
but anybody who needs some uplifting. He may be personally feeling very “off,” but that
never keeps him from smiling or offering to help.”
Carl sums up his philosophy for living with Parkinson’s and making the most of each day
by saying, “I don’t wish Parkinson’s on anyone, but I wish everyone could have the
opportunity to experience the things that I have experienced with Parkinson’s, and more
importantly, experience the love, compassion and generosity coming from wonderful
family, friends and strangers that I am able to experience these things with!”
Gary Sobol: Denver Local Hero
Gary Sobol has inspired the Denver Parkinson’s community to start moving and living an active lifestyle for over a year. No stranger to challenges, Gary was an ultra-marathon runner prior to his diagnosis with Parkinson’s disease. Following two bouts of cancer, he was diagnosed with Parkinson’s in 2008 after his primary care physician suggested he have his tremor examined by a specialist.
“Attitude is everything in life,” Gary says about his diagnosis. “I never quit. I don’t care what you diagnose me with. I had already been through two rounds of cancer. This was just another challenge.” This tenacious attitude inspired Gary to attempt taking on his new diagnosis with no medication. “I was tired,” Gary says of this period of his life. “I didn’t have any energy to exercise so I couldn’t get better.” Finally, in 2011, Gary decided to start taking medication and was almost immediately able to start hiking and running again, two of his favorite pastimes.
As Gary was able to exercise, he began to notice improvements in his Parkinson’s
symptoms and began targeting his efforts to impact specific symptoms that were
bothering him. When he noticed his handwriting had worsened, Gary began working specifically on dexterity exercises. “Within eight weeks I could write better than ever before,” Gary recalls. “I started thinking about my symptoms and exercise and thought ‘this could be fun.’ I wanted to start a class for people with Parkinson’s disease led by someone with Parkinson’s disease. We can all help each other.”
In January 2012, Gary began teaching a small Parkinson’s Boot Camp class at the
Boulder YMCA. Since then, Gary has conducted the class and dedicated his time and energy to research and certifications to ensure the program stays on the leading edge. Since the class’ inception, the roster has grown from 8 participants to over 50 and has expanded to attract physical therapists and other Parkinson’s professionals.
Gary aims to share his positive attitude with others who may be struggling with their Parkinson’s diagnoses. “We can’t get overwhelmed by all of the things that bother us,” Gary says. “We need to make lists of our symptoms, prioritize and start knocking them off one by one. Life is about making adjustments.” Through his Parkinson’s Boot Camp class, Gary has helped to create a community where people can work together to improve their lives one symptom at a time.
“I used to run up this mountain when I was a runner,” Gary reflects. “There was a time after my diagnosis that I didn’t think I would get up there again. Now I can walk up it. It takes me much longer and is a lot more work, but it is much more meaningful. I feel better about that than ever before. Parkinson’s can’t stop me.”
Tom and Carol Reid: Pittsburgh Local Heroes
Tom and Carol Reid have been inspiring and connecting the Pittsburgh Parkinson’s community for over ten years. In 1995, Carol began to notice changes in Tom’s physical abilities. His face lacked expression and he began to fall more frequently. After two years of changes, and one misdiagnosis, Carol finally convinced Tom to see a new doctor, the same doctor, in fact, that had diagnosed Tom’s father with Parkinson’s disease many years prior.
Shortly after Tom’s diagnosis, Tom and Carol visited a local Parkinson’s support group. “At first,” Tom recalls, “the support groups scared us and we dropped out for a while. Finally, we decided the rewards were worth the risks and rejoined a different support group in our new community.” Since that time, Tom and Carol have been deeply involved in the support group community in Pittsburgh. “The support groups have helped enormously,” Carol says. “That is the place we can reach out to. It is a hand to hold and reassures us that we are not alone in this.”
Tom and Carol have continued to fully embrace the Pittsburgh Parkinson’s community. They helped lead the Westmoreland County Parkinson Support Group in Greensburg, PA until 2010 when they returned to Pittsburgh to live closer to their children. Since 2010, they have been integral in starting a new support group in the eastern region of Pittsburgh. They help raise awareness for the National Parkinson Foundation of Western Pennsylvania, have volunteered in medical research and speak to community organizations about their experiences with Parkinson’s.
In coordination with the National Parkinson Foundation of Western Pennsylvania, the Reids have led planning of the Living Well with Parkinson Disease retreat since 2006. Tom and Carol saw these retreats as an opportunity to address topics not typically discussed in the community. Carol, who had been dissatisfied with the support generally provided for care partners, instituted an activity at the retreats called “Caring and Sharing,” which separates the participants into small groups where family members, care partners and people living with Parkinson’s can speak freely about their concerns, struggles and accomplishments with others who can relate.
Tom and Carol continue to touch the Pittsburgh community, sharing their stories and connecting with others. “I saw something on TV this morning about the Olympic athletes and all the people who support them so they can have such amazing performances,” Carol recalls. “I thought to myself that that is similar to how our families and the PD support groups work. We all can all deal with PD the best way possible when we are supported. That is why Tom and I have been active in the groups and the retreats…we are helped as much as we help.”
Roland “Ron” Kessler: Virginia Local Hero
Ron Kessler’s positive attitude and proactive approach to living with Parkinson’s disease have inspired the Richmond, VA Parkinson’s community for nearly 25 years. In 1988, Ron noticed shaking in his hand and headed to the National Institute of Health for tests. “The doctor told me, ‘Ron, the bad news is, you have Parkinson’s. The good news is, you’re an exercise fanatic and we believe this will serve you very well if you can maintain it on a daily basis’,” he remembers.
Ron’s belief in the power of exercise has indeed served him well. He has remained active, even developing his own stretching and strengthening regimen. Initially, Ron hesitated to visit a local support group, afraid to encounter what he believed might be a grim future. “My neurologist told me I was being selfish, and that by sharing my philosophy on exercise, I could give people hope,” Ron explains. “I went reluctantly and was surprised by the cheerful, can-do attitudes I encountered.” Since then, Ron and his wife, Rose, have been actively involved in several support groups and other activities around the Richmond, VA area.
The Kesslers have continued to make exercise a priority. In the first years after diagnosis, Ron was disappointed to find very few resources about exercise and Parkinson’s. Never one to be deterred, he decided to create his own, recruiting Rose to film his exercise routine and producing a 30-minute homemade VHS. He distributed it to others with Parkinson’s, encouraging them that routine exercises were helpful no matter how bad disease progression was. “I always tell people ‘as much as you can do this, do it, and keep pushing the edges’,” Ron says.
Rose plays a key role in Ron’s positive approach, encouraging him to stay active mentally and physically. He has several children, grandchildren and three great-grandchildren, all of whom he has been open with about living with Parkinson’s. Involvement in support groups and his local Parkinson’s community are also important, and Ron regularly checks in with group members no longer able to attend each meeting.
Ron believes positive attitude, exercise and proactivity make the difference for anyone living with Parkinson’s. When his voice started to soften, he sought help through LSVT LOUD. After noticing weakness in his legs and back, he worked with a physical therapist to tailor his daily exercises to regain strength. “When I was first diagnosed, there was a dismal outlook,” Ron says. “There just wasn’t the kind of information available that there is now. Today I think people with Parkinson’s have a much more positive approach. We recognized that while we may never completely get rid of this, there are many things we can do to feel and live better.”
John Carlin: Exercise & Parkinson’s Make Serendipitous Synergy
In essence, exercise is the act of moving. Parkinson’s disease works toward slowing or sometimes stopping movement. They seem to work against each other, but I have been able to combine these opposing forces, resulting in a very positive outcome in real life. Even though the average person would not put exercise and Parkinson’s together in the same sentence, I have brought the two together in a synergistic way.
I’d been a runner since 1972, having run everything from the 100-yard dash to marathons. I retired my running shoes back in 2000. Soon afterward, a running buddy and I took up road and mountain biking in its place. Then in 2002, I was diagnosed with Parkinson’s disease.
After my initial diagnosis, I went into a tailspin. Everything bad that could potentially happen to me because of Parkinson’s disease went through my mind. When I tell people about having this disease, they envision a shaky/jerky Michael J. Fox or one of their grandparents. A lot of people decide that once they’ve got Parkinson’s, the end is near; life as they know it will no longer exist. Some people never come back from the edge of this abyss, others decide to come back and fight. I am one of those fighters.
In 2008 my new quest began, to regain my life and to conquer this beast, PD. I decided that an action plan based on exercise was a good strategy to fight the disease. If there ever was a time to stand up and take the bull by the horns it was then. I had gone through five different neurologists in roughly five years, participated in several clinical studies, and tried naturopathic therapies. Then, I learned about an exercise program that changed everything. While researching Parkinson’s, I found out about a program at the Cleveland Clinic originated by Dr. Jay Alberts, a Davis Phinney Foundation-funded researcher. The program consisted of spinning on the back of a fixed tandem with a healthy biker on the front for one hour, three times a week for eight weeks. The reported results were huge: a significant reduction in symptoms occurred for the people with Parkinson’s. Out of the lab came what we now know as “Aerobically Assisted” exercise.
Tandem bicycling has changed my life completely. I truly believe that my program has slowed, maybe even reversed the course of my disease and improved my quality of life. People have come up to me and said, “I understand the program, but first you want to get me into Lycra bicycle shorts, then you want to get me on a tandem. I’m 64 years old, I don’t think so!” I tell them that I have a friend who is 65 and has been doing the program since she was diagnosed four years ago. The one thing the success stories all have in common is the realization that exercise, no matter what one’s age, is extremely important for quality of life. You must rise above and beyond your current comfort zone!
Exercise is so important to me on a daily basis. It has given me my life back. I joke that the downside to exercise is that you lose weight and get in shape. Without this program there’s no telling where I would be, but I know I would not be functioning as well as I am today. I’ve ridden the week-long RAGBRAI bicycle tour and have been inspired to test my fitness in other ways, too. My wife and I joined 10 multiple sclerosis and 4 Parkinson’s Differently Abled Adventurers – including one 79 year-old, – to climb Mt. Kilimanjaro in the summer of 2011. Out of our group of 28, 21 of us made it to the summit. We proved that you are never too old to try.
Dale and Glenda Alexander: Teeing it Up for Parkinson’s
Husband and wife Dale and Glenda Alexander of Oklahoma City are outstanding leaders in the Parkinson’s community, inspiring others with their experiences and demonstrating the power of positive attitude in living with Parkinson’s disease.
The Alexanders have worked side by side for 21 years as insurance agents for Farmers Insurance Group. Dale was diagnosed with Parkinson’s disease in 2002 after Glenda noticed that Dale’s left arm wasn’t swinging while they were having their daily walk. Their neurologist conducted further evaluations and shared the new diagnosis, after which the Alexanders began an acceptance process they understood well, since Glenda is an 11-year cancer survivor of Non-Hodgkins lymphoma. They applied their past experience to moving through the trials of this new diagnosis together, including the importance of not letting the disease control them, but instead continuing with their daily lives and encouraging others.
Among their recent accomplishments, Dale and Glenda are active golfers and have raised $300,000 for support groups in Oklahoma as co-chairs of the annual “Tee it up for Parkinson’s” golf tournament in Oklahoma City. They also connect with others to help people understand the value of support groups and exercise groups and the ways in which they can improve daily living.
The Alexanders continue working and are very active in their community sharing their positive attitude in living well with Parkinson’s disease and enjoying time with their two daughters, Kristin and Geri, their sons-in-law John and Richard, and granddaughter, Julia.
Allison Smith-Conway: Summoning Strength through Sharing
When Allison Smith-Conway was diagnosed with Parkinson’s at the age of 32, she got serious about looking for role models with whom she could identify. She conducted some research to find people who were doing good things in the Parkinson’s community and discovered Davis Phinney and the Davis Phinney Foundation. The Foundation’s “live well today with Parkinson’s” message resonated strongly with her, so when it came time to nominate someone for her support group’s Parkinson’s Pride award, Davis came to mind immediately.
“I’ve always been athletic myself, was a cheerleader back in school, and I could relate Davis’ loss of physical ability when it was such a significant part of his part of his life. If it was tough for someone like me, I couldn’t imagine what it must be like for him,” said Allison. “Like Davis, I wanted to focus on feeling as good as possible right now and keeping myself as healthy as I can for as long as I can.”
In February, 2011, The Victory Summit® symposium and Davis came to the San Diego area. Allison invited Davis to accept the Parkinson’s Pride award in person, while he was in town for the pre-Summit dinner. “It was a very exciting moment,” noted Allison. “I got very nervous, even though I am normally totally calm in situations like this. It was hard to get the words out, because he had no idea how influential he’s been on my life.”
Davis encouraged Allison to “create a PD wolf pack” – a network including her support group, caregivers, friends, family and medical team – that can come together to provide support without risk of any one person becoming drained. “My husband doesn’t have to bear the full burden, because I have this whole ‘pack’ of others on whom I can rely.”
Allison believes that with Parkinson’s disease, educating yourself is key. The more you know, she says, the more you can share your needs and experiences with family and friends and get the help you need.
As a certified personal trainer and marital and family therapist, it was natural for Allison to look for ways to complement the support resources available in her area. “I thought, what would I need for support? And I discovered there was a lack of continuation of care, especially related to the mental aspects of living with Parkinson’s. As a result, I created Parkinson’s in Balance (www.parkinsonsinbalance.com) to deal with the emotional issues that come with the disease.”
She also noticed that support groups are not one-size-fits-all, and learned that many young-onsetters like herself don’t want a structured group with question-and-answer sessions over coffee. “YOPD people like support, but we don’t necessarily want to see what we might experience later with this disease. I enjoy meeting at a community event or for a fitness class – maybe go out for lunch and casual conversation with other people with PD afterwards.” She has met many other people with YOPD who have shared similar sentiments and contacted her to find ways to talk about their disease with family and friends. This is validation that there is an important role for programs like her Parkinson’s in Balance to play.
“Some people have told me I’m a hero for coming out with my disease and encouraging others to talk about it. But I think whether it’s me or someone like Davis, we’re just people who needed help and realized that in offering ourselves and our stories, it helps us at the same time it might help another person out there with Parkinson’s,” commented Allison. “The true heroes are all the people who get up every day, even when they feel like crap. They’re the caregivers who keep going, even on days when they feel drained or resentful of their situation. Those are the heroes of PD, and there are thousands of them who deserve encouragement and praise.”
Nan Little: Pedaling Plains, Climbing Mountains
In January 2008, I wrote in my journal: “I wish my hand would stop shaking. It’s like I’ve got Parkinson’s or something. It’s been doing this for months, and I can’t make it stop.” I received my Parkinson’s diagnosis a month later, and in that moment, resigned myself to a diminished life of medications, depression, and varying symptoms.
As the months passed and Autumn arrived, I learned of Dr. Jay Alberts’ work demonstrating that rapid-cadence cycling could reduce Parkinson’s symptoms. Dr. Alberts (a Davis Phinney Foundation research grant recipient) invited my husband and me to ride with him in RAGBRAI (a large, multi-day bicycle tour) across Iowa with his Pedaling for Parkinson’s team the following summer. Not a natural athlete and terrified I couldn’t make it, I began riding from 20-35 miles 4-5 times per week, striving for 80-90 rpm with my heart rate at 60-80% of my maximum. After about a month, my symptoms largely disappeared!
We rode RAGBRAI that summer of 2009 and repeated it in 2010. My consistent routine of fast-paced cycling (outdoors or on an indoor trainer) has enabled me to cut my medications in half. To learn more about Dr. Alberts’ research and see a video illustrating his approach, visit http://www.davisphinneyfoundation.org/research/dpf-funded-research/. My goal is to work YMCAs and other organizations to start Pedaling for Parkinson’s programs so that many others can experience some of the benefits I have as a result of fast-paced cycling.
In 2011, at age 65, I skipped RAGBRAI so that I could instead join a group of people living with Parkinson’s or Multiple Sclerosis in climbing Mt. Kilimanjaro. With a summit of 19,340 feet, conquering Kilimanjaro was the most difficult physical challenge I’ve ever undertaken. Our group wanted to demonstrate to ourselves and to the world that people with neurodegenerative diseases need not be constrained from living our dreams and pursuing a full life. It took five and a half days to reach high camp at 15,500 feet. Just before we left camp at 10:45 p.m. to begin our summit, my husband whispered, “I know you can make it.” That kept me going most of the long night spent climbing 4,000 more feet to the top of the mountain. Many struggled with the altitude and the cold, and several climbers turned around before summiting. It was 15º F and windy. My guide fed me partly frozen water as if I were a baby. He unwrapped GU and Shot Blocks and stuffed them in my mouth. Trancelike, I followed his footsteps.
The sun rose before we reached the crater rim, but with its rays came a little warmth and knowledge that I would complete this climb. I wept. We walked along the rim for another hour to reach the summit, passing returning members of our group, many of whom were sick, dizzy, nauseous, or complaining of headaches, but utterly joyful they had stood atop Mt. Kilimanjaro. After an hour or so of relatively flat walking, we reached the summit. Happily, I wasn’t sick at all. I unfurled my banner of support from family and friends. I made a video (You Tube nanlittle1) and took my Parkinson’s meds. Less than 13 hours after setting off in the night, I returned to high camp. I had stood at the top of Africa!
Climbing Kilimanjaro was not just about getting to the top, though there was profound joy in reaching that goal. The most important part was the transformation in my own thinking about myself. I am no longer a person doomed to experience a downwardly spiraling quality of life. I am a person who will climb mountains and who just happens to have Parkinson’s disease. Many people have told me that my effort inspired them to think of themselves differently too, in spite of their Parkinson’s. Although we have limitations, it’s likely that we can all be in control of our lives and our bodies more than we are sometimes led to believe. We don’t have to climb Kilimanjaro or ride RAGBRAI to be empowered. People with neurodegenerative diseases can live many dreams; the point is to make the choice to do it.
Maxine Meach: Michigan Local Hero
As a leader, educator and advocate, Maxine Meach of Traverse City, MI has been an inspiration to the Parkinson’s community for more than 25 years. Shortly after her husband, Charles, was diagnosed with Parkinson’s disease in 1984, Maxine, along with Charles and another couple, formed and led the Grand Traverse Area Parkinson’s Support Group to provide information and support to individuals facing the challenges associated with Parkinson’s disease.
Since Charles passed away in 1992, Maxine has continued to champion Parkinson’s education and inspiration throughout the years. In fact, she has been called “unstoppable.” She expanded the Traverse City support group to Frankfurt, and she has created monthly meetings for people with Young Onset Parkinson’s. In addition, Maxine founded the Parkinson’s Summer Forum and has facilitated the continuing event, which brings prominent national and local experts to the region to educate medical professionals and families. Maxine also works closely with medical and social service organizations to help people with Parkinson’s live well with the disease, and she has connected people with Parkinson’s to critical resources, such as respite care and meal programs.
With a zest for life, Maxine channels passion into everything she takes on. In addition to her Parkinson’s community involvement, she is a founding member and past president of the Bay Area Senior Advocates, former president of the Friendly Garden Club, active volunteer with the Ikebana Flower Society and advisor to the Grand Traverse Children’s Garden. Additionally, Maxine has been a longtime volunteer with the Grand Traverse Regional Community Foundation. Her dedication to making a difference has been recognized by many esteemed organizations. The Michigan Parkinson’s Foundation awarded Maxine with the Raymond B. Bauer, M.D. Humanitarian Award, and she has been honored with the Channel 7&4 Helping Hand Award. Maxine is a former dental hygienist and University of Michigan graduate. She has three daughters and several grandchildren.
June Brunson: San Diego Local Hero
When a psychiatrist told June Brunson her husband Norris’ anxiety, masked expression and tremors were caused by Parkinson’s, she acted swiftly, entering him the very next day in a trial study for medication to slow the brain disorder’s progression. The retired office manager was not nearly so quick, however, to accept that she needed support to handle the changes her husband’s diagnosis meant for both their lives.
After two years denying that her husband’s deteriorating condition was exacting an emotional toll on her, Brunson heeded the advice of doctors and joined a support group near her Oceanside home offered by the Parkinson’s Association of San Diego. In the 11 years since, not only does she attend meetings regularly, but she was honored last weekend for her volunteerism and inspiration as a Local Hero at the Davis Phinney Foundation‘s The Victory Summit® symposium. The daylong event at the La Costa Resort in Carlsbad provided information about advances in medical research, exercise and other ways to live well with Parkinson’s.
Brunson remembers being very quiet in the first few meetings she attended. More and more she realized she wasn’t alone in the challenges she was facing caring for her husband. “At first, I just listened to what the people in the group were saying was happening in their lives, then I started to look at my world and think, ‘Well, that’s happening and that’s happening. This is how they handle it. I’m going to try that,’ ” Brunson said. “You have a lot of valuable information there. I learned I could pick up the phone and say, ‘I can’t deal with this,’ and the next thing I knew, I was dealing with it.”
After attending just a few meetings, Brunson, now 78, joined the board of directors of her North County group. Over the years, she has served as treasurer, newsletter writer, fundraiser, community outreach educator, and leader of the association’s Vista support group. In 2006, she took on the mammoth task of compiling a phone directory so members would have support at their fingertips.
Brunson also sings with Tremble Clefs, a group of people with Parkinson’s and their family members and caregivers. She performs concerts at churches, senior centers and assisted-living facilities.
This is all on top of being caregiver to her husband of 56 years. A typical day begins at 5 a.m. with her helping Norris shave, brush his teeth, get dressed, eat, do his exercises, and get to medical appointments. He is never left alone when she has a board meeting or takes time for herself.
“When I go to a movie, it costs me $50 because I have to pay for a caregiver,” she said.
“For awhile, your life disappears,” she said. “I’ve learned to live with it now, but for awhile I was his shadow. Parkinson’s is a progressive disease,” she said. “You get on a plateau and then all of a sudden something happens and you have to adjust medications and lifestyle. No two days are the same.”
Brunson said the support groups still help her work through the frustration and depression that can come from this unpredictable life. “Any stress I start showing affects Norris. I notice him pulling within himself,” she said. “To make a better day out of it, you have to try not to stress out your partner and not be stressed yourself. It sets the tone for the day.”
Doug Bahniuk, diagnosed with Parkinson’s in 2004, rode his bike in the summer of 2008 from Boise, ID to Denver, CO, traversing some 900 miles and 12,000 vertical feet. Doug is 55 years old and lives in Ohio; a long-time cyclist, he was diagnosed with Parkinson’s disease in 2004. Doug describes his greatest challenge as not feeling sorry for himself and giving up. He writes, “Sometimes it’s a temptation. After all, depression is a common part of the disease. I know where this thing is going; I’m a biomedical engineer. So many people depend on me – my employees, my family, my 10 year-old son – and I know that to them, I am a leader. So I try to lead by example; I take the hardest job, I don’t slack off, and I don’t want anyone’s pity. I still skydive and I continue to hunt. I just try to adapt (like using one finger to type) and say to myself, ‘This is just a new phase of life, I can handle it.’“
“There is no denying that Parkinson’s makes life hard. Using my hands can be difficult, besides uncontrollably shaking, they often go numb. A couple of times I’ve lost almost all the strength in my left hand. But I can overcome these little things. When I start shaking I wait until it stops. When I lose strength I improvise however I can. It just takes a lot of patience.”
“My philosophy about Parkinson’s is not to let it dominate my life. By itself, it’s not going to kill me, at least not yet. It might cause me some difficulties on a ride, but I’m not going to worry about it, at least I’m doing something I love. Riding is my way of living the best way I can every day.”
John Ball is a 65 year old Californian who was diagnosed with PD 26 years ago at the age 39. His children were three and four years old at the time of his diagnosis. John writes, “When I was diagnosed and began taking Sinemet, I felt as if my body had been given back to me. I could once again run and hike and ride my bike, and I began to do these things immediately. I pushed myself to run a couple of 5k races, then a 10k, then a half marathon once a year to check my state of well-being. Eventually I began to wonder if I could do a marathon. Finally, 13 years after my diagnosis, at 51 years old, I ran my first L.A. Marathon in March of 1996. When I finished, 4 hours and 29 seconds after the start and nearly two hours behind the elite runners, I said ‘NEVER AGAIN.’ I was thinking of those nearly 4,000 runners who had finished ahead of me. My wife quietly pointed out that there were more than 17,000 runners still out on course behind me.”
Those 29 seconds nagged at John, and he began training for his next marathon. A year after the first L.A. Marathon, he ran his second race in 3:59:10. Although he hasn’t bettered that time, John has completed 13 of the last 14 editions of the Marathon, plus a few others. His total stands at 22. He’s now preparing for his first ultra-marathon, a 50k (31 miles) in December, 2009.
“The best thing about running long and hard is that it clears my mind and refreshes my spirit. I also believe that it is replacing or refurbishing brain cells that have been attacked by the Parkinson’s disease process. I don’t have any concrete evidence that says I’m much better off than I would have been if I had not exercised as diligently, but I certainly believe it to be true. I’ve seen the value of exercise in other PD patients, too. We all know exercise is good for our bodies, brains and emotional well-being – irrespective of any disease we may be facing. I say that it’s even more important to someone facing a chronic disease like MS, Alzheimer’s, Parkinson’s or diabetes. Besides, it’s one of the few things we have almost completely under our control. We can decide what kind of exercise is best for us, as well as how much to do and when to do it. I say ‘Do what you like, and do it often!’ Running the Catalina Island marathon was very special to me because it was something I had long dreamed of, but seemed out of reach. Now I know that it was there within my grasp all the time…I just needed to believe in myself and trust in the support of my friends and teammates.”
Cheryle, who hails from Durango Colorado, was diagnosed with Parkinson’s five years ago at the age of 56. She had teenage children at the time of her diagnosis. Cheryle describes her biggest challenge as being able to interact with the special people in her life. Parkinson’s gets in the way of Cheryle’s ability to display emotion the way she used to, which creates some challenges in relating to other people. While the medication helps to some extent, it doesn’t restore the natural, facial expressions that were so automatic before Parkinson’s. Cheryle and her family are now more aware of this problem, and she has found new ways to communicate her feelings. Cheryle also finds help and inspiration from her psychologist, himself a paraplegic for more than 30 years.
Like many patients with Parkinson’s, Cheryle had to deal with the depression associated with being diagnosed with a chronic illness. Cheryle writes, “My future looked dismal and I felt as if I had no control of my life. For years I had skied, hiked and climbed peaks, but knew I would no longer be able to do those things. Then a friend suggested I try Tai Chi, which seemed to improve my balance. Family and friends encouraged me to resume hiking and cross country skiing, which I now do with my family. A few years ago I started purchasing one-year Colorado hiking certificates. Then last year I decided to go for it and purchased the five-year pass. I think that change in attitude was an important milestone for me. I was ready for the 2007 Copper Triangle Challenge. I have Parkinson’s disease, but that does not define or control me.”
About one month prior to the to the Copper Triangle in 2007, Cheryle’s family and friends encouraged her to participate in it. She had not ridden a bicycle for more than seven years because of issues with Parkinson’s and had minimal experience with fundraising. She purchased a bike with low gearing that allowed her to feel more stable. She started riding and continued her hikes in the mountains to help acclimatize her to the elevation along the ride. She wrote a letter to family members and friends and the donations started coming in. At 61 years of age, Cheryle was able to ride 61 miles of the tour and to be the leading pledge ride fundraiser.
“People see me shake and move uncontrollably in an uncoordinated manner and stumble over words and are impressed that I can push myself to ride, climb peaks and accomplish other challenging activities. I had been afraid that strenuous exercise might make the Parkinson’s worse, but now I know better. I’m getting stronger and I feel better mentally and emotionally. People frequently tell me how good I look. Doing something active to help support research makes me feel more in control of my life and is a tangible way of helping others. That gives me both joy and energy. I accept that I do have and will always have this nasty, progressive disease. I will enjoy an active life for as long as possible. Other sufferers deserve to experience the joy that I have found in confronting the fears and limitations created by this disease. I once read a meaningful quote from Norman Cousins that speaks to me, “Don’t defy the diagnosis, but do try to defy the verdict.”
Scott Eltringham, who lives in Washington D.C., was diagnosed with young onset Parkinson’s disease shortly after his 31st birthday in 1999. Scott has ridden his bicycle more than 25,000 miles while living with Parkinson’s, including a self-supported ride from Seattle to San Francisco and another from Boston to Bangor, ME.
His first symptoms were the inability to rapidly wiggle his right fingers, and a tension in his right leg while cycling. Several months of testing revealed that he had Parkinson’s disease. Fortunately, the medication worked well for him for the next six years. Scott writes, “For me, Parkinson’s is less about spasmodic movements, but rather, about slowed movement, like moving in molasses without the sense of resistance, more pronounced on my right side. The side effect was dyskinesia, sometimes so bad that it was difficult to sit in a chair. Due to the worsening side effects of the medication and two bad bike falls, I had to stop bicycling in September 2005 – permanently, I thought.”
Scott made the difficult decision to have Deep Brain Stimulation (DBS) surgery later that year. The surgery improved his life enormously, almost eliminating troublesome nighttime and morning dystonia, caused by withdrawal from the medication. An adjustment to the DBS a year later curbed the dyskinesia significantly enough that he got on his bike again on Memorial Day in 2007. When Scott had the surgery, he had an idea in his head that he would ride the Sunflower Revolution as his comeback ride in 2007. “As I neared the finish, I was reflecting on the outstanding support of the other members of Team Cholesterol, many of whom drove to Cincinnati to ride with me. Then as I crossed the finish line, the ride announcer said that we had raised more money than any of the other teams. What was already a powerful moment blossomed into a feeling so strong that it brought tears to my eyes. When I found that Davis was waiting at the finish line for my team, it was all I could do to hold myself together.”
“I do not think of myself as a hero, despite being called that by several people. My heroes are people like my wife, Sarah, and my friends and riding companions on Team Cholesterol; people who walk beside me not because they have to, but because they choose to. I think I inspire people with my attitude. My thinking is this: I can live ‘worried’ or ‘not worried’; either way, I’ll get wherever I’m going. I know which way I’d rather spend my time. Sometimes this is easier said than done, but that’s my philosophy. Part of what keeps me going is riding; both in the physical and mental sense. Physically, use it or lose it. Mentally, no matter what the Parkinson’s or medication side effects are doing to me, the riding is refreshing.”
Jan Humphreys has lived with Parkinson’s for the last 30 years. She was diagnosed at age 47 after ten years of symptoms, including pain and stiffness in her joints and muscles. One of Jan’s greatest challenges is to stay motivated to compulsively do her exercises daily. Sometimes she feels as though the pain she has is squeezing her down into a smaller and smaller space. Concentrating on her exercise or engaging her mind in something else minimizes the pain. Jan and her husband of 57 years, John, own a couple of tricycle bikes which they enjoy immensely. “When I am riding my bike I feel so free, and the pain is considerably less than when I am walking.”
Jan also struggles with speech problems and has recently obtained the DVD from the LSVT Speech Center so she can practice more regularly. “I know the speech practice works, but I have to overcome my resistance and depressive mood to do it. I know it will be worth it, but it is certainly not easy.”
Jan is fortunate to have a wonderfully even disposition. She smiles a lot, which belies the Parkinson expression of a flat affect. She prays for “healing of the spirit which includes patience, ability to respond to others and gratitude to God for all the blessings of life.”
Many of Jan’s moments of victory come from meeting other patients and their caregivers and listening to their stories. “Every time I contribute the essence of my wisdom to a group of patients and their families, I feel better about having this inconvenient condition called Parkinson’s. I insist on using this terminology ‘condition’ because Parkinson’s disease sounds like it is transmissible. Jan also finds inspiration in her poetry and most especially from the love of her life, her husband John.
Ellen Jante, Milwaukee Local Hero
Ellen Jante has been an educator, advocate and inspiration to the Milwaukee-area Parkinson’s community for several years. Following her husband Dale’s Parkinson’s disease (PD) diagnosis more than 20 years ago, Ellen has used her energy and determination to touch hundreds of lives, whether tirelessly speaking to physical therapists and others about PD care, advancing public awareness by recruiting experts to educate local residents with PD and their caregivers on ways to live better with PD today, or successfully advocating for expanded coverage of PD treatment costs.
Ellen has served as co-facilitator of the West Allis Memorial Hospital Support Group for 10 years. She has spoken about Parkinson’s disease to audiences large and small, including groups of physical, speech and occupational therapists to teach them the skills of dealing with their patients on a daily basis.
As a passionate advocate, Ellen championed a major change in Medicare reimbursement for people with PD in 2002 as she successfully led an effort to secure Medicare coverage for her husband’s DBS surgery. Since then, many patients across the country have benefited from DBS without personally bearing its high expense.
Ellen believes in exercise and encourages people with PD to attend a Parkinson’s exercise class twice a week. She promotes training caregivers to follow through at home with exercises conducted during therapy treatments. She is currently living in Wisconsin, with her husband of 42 years. Ellen also has two daughters and six grandchildren.
Carol Meenan, Alabama Local Hero
Carol Meenen has been an inspiration to the Alabama Parkinson’s community through her involvement with the Young Onset program and through her advocacy for all newly diagnosed people with Parkinson’s.
To me, Moments of Victory are when you beat PD and you feel amazingly positive about your life. I will not let PD take over my life – I will fight till the last breath leaves my body. I have a good life and I will work to maintain it the best way possible. My husband of almost 38 years has been very supportive in spite of his health problems. That is a victory in itself.
When my doctor told me I had Parkinson’s, I was in a state of despair and I asked him, “Why me?” He asked, “Why not you?” So I decided from that day forward to make something positive come from that diagnosis and I believe I have. I became an advocate for PD and I joined Parkinson’s Action Network to help find a cure for this unkind disease. Today I am the Senior Advisor for the Newly Diagnosed, providing emotional and educational support to newly diagnosed patients. I meet a lot of Young-onset patients like me, but some of these are much younger than I was when I was diagnosed at 49. I decided that I would help them cope with their illness, and I have done just that by talking to them and encouraging them to think positively and do not let PD take over their lives.
I feel very fortunate to be doing as well as I am. I have learned to fight with all my might, and I have accomplished a lot in my years with PD. I started a fundraiser called Clays For A Cure, and it has been very successful. It gets bigger and better every year – our sixth annual sporting clays shoot is scheduled for October 3, 2009. I attended the Unity Walk in New York City for several years and walked the two miles for PD research to help find a cure. Walking the two miles is quite an accomplishment and a real victory. I started writing poetry after I was diagnosed with PD, and some of the poems are about my PD friends. Currently, we are working on a CD for PD: Songs of Love and Hope to sell for PD research to help find a cure. See our website at http://www.acpsounds.org. I wrote the lyrics and my talented musician friend, Andre Clark, composed the music. I believe I have had my share of Moments of Victory and anticipate many more to come.
Jane Meyer, North Carolina Local Hero
Jane Meyer, 59, was diagnosed with Parkinson’s disease six years ago. The news was devastating, especially since Jane had experienced the Parkinson’s journeys of both her mother and aunt firsthand after both were diagnosed in their seventies.
Jane suspected that she had Parkinson’s after noticing a shaking hand and smaller handwriting, but the memory of her family’s Parkinson’s caused her to ignore these early symptoms for years.
After seeing Michael J. Fox on television, Jane realized that she could not deny her Parkinson’s any longer. Yet, she did not share the news with anyone – not even her family. Jane hid her Parkinson’s for years out of a feeling of not wanting to burden or worry anyone. In 2006, Jane felt that she couldn’t hide it anymore. She relinquished her fear and told her family.
As fate would have it, there was a Parkinson’s support group that met in the same building that Jane worked in everyday. Jane attended a meeting and met Ginny Koroly, fellow person with Parkinson’s, and from that day on they became best friends as they shared their struggles, happiness and future on how to live with Parkinson’s. Jane began to work with a therapist to accept the fact that she had Parkinson’s and to accept help on how to tell her friends and co-workers. Slowly the process began and it got easier.
Jane and Ginny have been the support group leaders for the Young Onset Getting Out (YOGO) group for two years now. Jane’s favorite part of the group is getting to talk with the newly diagnosed and to help them through all the things she dealt with as well.
Jane now recognizes her good days and bad days, but she is determined to live her life to the fullest. She is still working as the Executive Director of Smart Start for Mecklenburg County, helping children and their families. Together, Jane and her husband of more than 40 years have two daughters and two grandchildren.
Garry Morris, Tucson Local Hero
Gary Morris, 68, has been active in the Minneapolis area and in Green Valley, Arizona, Parkinson’s communities for many years. The diagnosis of Young Onset Parkinson’s in 1998 was devastating for this life-long athlete. But the death of his favorite brother, who had challenged him to find “life after Parkinson’s,” made him determined to live his life to its fullest. He does that every day and is an inspiration not only to his Parkinson’s group but also to people living in his community.
While still living in a suburb of Minneapolis, Gary initiated a men’s group, where the issues of living well with Parkinson’s could be freely discussed. He did the same when he moved to Green Valley, and he remains a co-leader of this monthly Men’s Forum, which is an integral part of the Green Valley/Sahuarita Parkinson’s Support Group.
Gary also served as vice president and then two years as President of the Green Valley/ Sahuarita Parkinson’s Support Group. He instituted summer potluck socials to keep members connected during “off season” when the usual educational meeting isn’t held. He supports members through phone calls and personal visits, and he has partnered with the Green Valley Assistance Services to get the appropriate help for members with special needs. In his current position as first vice president, he continues this outreach.
Gary created the group’s motto, which he used as the focus for their programs:
“Give Parkinson’s the SAC: Stay Mentally Stimulated, Physically Active, Socially Connected
Last year, Gary organized the group’s first annual April Activity Day, which was a social gathering for the community, Parkinson’s awareness event and research fundraiser. The activities provided opportunities for all three aspects of the SAC motto, with bingo, board games, and cards for mental stimulation; group exercise, biking and walking for physical activity, and a box lunch for socialization.