Local Hero Award
Receiving the Local Hero Award was a very humbling experience and great honor to be the one of so many others that it could have went to. I certainly do not consider myself a hero, I am just so grateful that I have had the desire, strength, endurance, support from so many, to get involved and be actively doing things to help the PD community.
I am so very grateful for the friendships I have made along the way. To my good friend Brian Baehr, it was a great experience having you be the one who presented the award to me, and the words you spoke of me before I came on the stage. Thank you for being there for me!
And thank you Davis Phinney for the great experience that I had with The Victory Summit.
It was a great pleasure to meet you and be with you. I hope to be able to make contact with you more and maintain some type of PD.
I am mainly concerned about those with PD who are not actively involved and may be suffering in silence. We need to seek them out and bring them in. Please help me if you would!
Moments of Victory®
Inspired Stories
Support Us
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?
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 regiment 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!”
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.
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.
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.”
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.
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.
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 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.
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 Y
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?
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 regiment 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!”
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.”
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
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
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 Brandsma
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
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
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 Y
[R.S.]
i was diagnosed of parkinson disease 5 years ago,i started azilect,then mirapex as the disease progressed in february last year,and i started on parkinson disease herbal medicine from ultimate life clinic,few months into the treatment i made a significant recovery,almost all my symptoms are gone,great improvement with my movement and balance,it been a year and life has been so good for me,reach them through there website at www.ultimatelifeclinic.com
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