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Giving Back & Living Well with Parkinson’s

giving-back-living-well-with-parkinsons

Giving Back & Living Well with Parkinson’s

“The best way to find yourself is to lose yourself in the service of others.” – Gandhi

When we ask people in our community what they do to live well, the vast majority say that giving back is at the top of their list. Whether they give back by leading support groups, participating in clinical trials, educating themselves so they can educate others, or raising money for Parkinson’s, giving back gives them a purpose and helps them connect with others.

In honor of Parkinson’s Awareness Month, we asked a few of our Davis Phinney Foundation Ambassadors how giving back helps them live well with Parkinson’s.

How has giving back helped you live better today?

Chandra Morra, a personal trainer and fitness instructor says that living a life of service is “the difference between a good life and an amazing life”. She goes on, “I can’t imagine doing anything else. It is truly the best feeling in the world every day to get up and go to “work”, knowing that what I offer to individuals and groups with Parkinson’s actually is medicine. Knowing that I’m helping others brings me life satisfaction unlike anything else.”

 

On mornings when former dancer Gretchen White wakes up and her feet and hands are in pain, she reminds herself that there’s someone else who has it worse off than she does. She gets out of bed and sends an email of encouragement or invites someone out for coffee who was just diagnosed with Parkinson’s because she knows that will serve her far better than focusing on something she can’t control.

 

After retiring from a 27-year military career and feeling discouraged that he couldn’t find a job for over a year, Jerry Boster’s Navy training kicked in and a little voice in his head said, “Get off your butt and get to work. If you don’t like your situation, then change it.”  He’s now the volunteer President of the Hawai’i Parkinson Association.

 

As Carol Clupny says, “If you think about it, Parkinson’s is a horrendous disease, and it can get depressing and feel hopeless; however, the more I give to others, the better I feel about me – helping others lifts me up.” Through various Facebook group chats, Carol is able to offer a listening ear and help people access evidence-based resources that will help them live better with Parkinson’s. For her, even though others think of her as an upbeat person, she says it’s a decision she makes on a daily basis.

Do I have anything to give back?

Regardless of whether you’ve just been diagnosed with Parkinson’s or have had it for years, the uniqueness of your situation can help someone today. All of the Ambassadors we interviewed realized there were many parallels in their lives before their diagnosis and after their diagnosis. From beauty star queen to decorated Navy officer to dietitian to speech pathologist, each person gave back using the skills, passions, and talents they had been honing throughout their lives. As Gretchen said, “I guess the person I was and am now has never changed. I just added a sprinkle of Parkinson’s on top.”

Carol has always been an adventurous world traveler and book lover. After her diagnosis, she was watching a video of people shuffling who were in the advanced stages of Parkinson’s. She didn’t want to go there. So, since consistent exercise can help alleviate symptoms of Parkinson’s, she began training for the Camino de Santiago in Spain – a pilgrimage walk over 1,000 miles long, which she has now completed five times. She also loves to ride a tandem bike with her husband in Iowa for the Des Moines Register’s Annual Great Bicycle Ride Across Iowa (RAGBRAI) to raise money for Parkinson’s. While writing about her adventures on her blog, friends encouraged her to write a book. She did. It’s called The Ribbon of Road Ahead:  One Woman’s Remarkable Journey with Parkinson’s Disease. Carol combined her love of reading and her sense of adventure to give back to the Parkinson’s community.

Carol Clupny - Davis Phinney Foundation Ambassador
Carol Clupny and her husband ride to live well with Parkinson’s

Though not everyone would describe Parkinson’s this way, Ambassador Marty Acevedo says that “having Parkinson’s has been a gift.” Before her Parkinson’s diagnosis, Marty, a registered dietician, worked as the dietary director of a large hospital overseeing nutrition services from food service to patient counseling. As a natural leader, she surrounded herself with people of excellence who did their job well, and she continued to excel. Today, she’s able to use those same leadership skills as an advocate on the Board of the Parkinson’s Association of San Diego who encourages funding of legislative bills that support people with Parkinson’s.

Marty Acevedo - Davis Phinney Foundation Ambassador
Marty Acevedo and her husband

In high school, Jerry led many organizations and later used this gift of leadership during his time in the Navy.

The Republic of Korea Consul-General gives Commander Jerry Boster an award for service to Korea.

After his diagnosis with Parkinson’s, Jerry chose to use his leadership and networking skills to help his communities. Within the Parkinson’s community, he organizes two big events each year. One is an educational symposium and the other is a fundraising walk. In addition, he volunteers at golf tournaments, sport booster clubs, and other community events. When itemizing his tax donations involving time and mileage last year, it covered over a page of activities, single-spaced. Jerry has discovered, “The busier I am, the better my Parkinson’s is.”

As a former beauty queen and dancer, being diagnosed with Parkinson’s was quite a setback to Gretchen. After a time of mourning and depression, Gretchen started to see the beauty in faces around her and started a one-woman non-profit called “I AM” The Face of Project which shares the beautiful faces and stories of people living with Parkinson’s. In her book of the same name, she illustrates that your face and story can make a difference in someone’s life.

Gretchen White - Davis Phinney Foundation Ambassador
Gretchen still does modeling as a “disability fashionista.”

If you think you have nothing to give back, think about the skills and passions you had before your diagnosis. Similar to these Ambassadors, there might be ways you can help others you never imagined.

Biggest challenges of giving back

When we asked these Ambassadors about the challenges of giving back, the identified four.

#1 – Accepting your diagnosis

 Rarely does acceptance of a Parkinson’s diagnosis come overnight. For some, it takes time to sink in and for them to realize that they can live well with Parkinson’s for a very long time. It’s important to take that time. There will be plenty of time for you to give back; however, filling your cup is an important first step. Once you have accepted your own diagnosis, you will in a great position to help others do the same.

#2 – Distribution of resources

Even though educational resources exist, it can be challenging to get them out into the world. In Hawaii, Jerry estimates that 7000 people have Parkinson’s; however, he’s frustrated that his organization only has contact with about 25% of them. He says, “We have great resources, especially the Every Victory Counts® Manual, but we just don’t have the opportunity to give it to them.”

Since the typical person with Parkinson’s is an older person or “Kapuna” in Hawaiian, last year Jerry gave 18 presentations at senior centers, gained exposure through TV and radio, and organized a fundraising walk to increase Parkinson’s awareness. Since many “Kapunas” do not have access or skills on the computer, he no longer distributes his newsletter in a digital version only. He also offers paper copies. One goal he’s currently working on is to build a brick and mortar resource library in hospitals so that people can check out books and learn about support groups and exercise classes from people during face-to-face interactions. The obstacles are there, but as Jerry proves, they can be overcome.

#3 – Lack of resources, especially in rural areas

Carol says that one of the biggest challenges of living in a small town is a lack of services. Carol lives in Oregon and not only does her town lack a neurologist, but most in her community have never seen a movement disorder specialist. Though there are physical, occupational, and speech therapists, they are in such high demand that appointments are few and far between. As an Ambassador in a rural area, Carol has a big job. However, this saying sums up her determined philosophy, “If you ever think you’re too small to be effective, you’ve never been in bed with a mosquito.”

#4 – Not doing enough

Feeling like you’re not doing enough, and will never be able to do enough, is a common concern for givers. There’s a lot of work to be done in the world of Parkinson’s, and that can feel overwhelming. However, if you can focus on what you are able to do, you will be surprised at how that adds up over time. Enough is a dangerous word. Do what you can do. ALL of it matters.

How can you give back?

Feeling inspired and want some ideas on how to give back? Here are four.

#1 – Advocate

How does advocacy help people with Parkinson’s?

Advocacy not only increases awareness of Parkinson’s, but it also builds community and creates the opportunity for people to solve problems together. By being involved at the local, state, and national levels, you can influence decisions about funding, improving care, and the research needed to find a cure.

Jerry is an inspiring advocate for Parkinson’s. Since a large part of Jerry’s military career involved building diplomatic bridges, he has continued to do that by working with congressional delegates in Washington, DC, to work on policies that benefit the Parkinson’s community. Since there are scientific and physiological connections between Parkinson’s and other disorders, such as Alzheimer’s, Huntington’s, and Tourette’s, Jerry is also a member of additional organizations such as the Unified Parkinson’s Advocacy Council and the Movement Disorder Policy Organization. Jerry reports that the budget from the National Institutes of Health for Alzheimer’s is 1.5 billion, while the budget for Parkinson’s is less than 200 million. Since there is power and strength in numbers, Jerry feels we can leverage our cause to do research that is cooperative and not competitive. After our interview, Jerry was headed to Governor Ige’s office to pick up a proclamation raising awareness of Parkinson’s by naming April Parkinson’s Awareness month in Hawaii.

Mahalo to Governor Ige for proclaiming April as Parkinson’s Awareness Month in Hawaii.

Carol attended a day of advocacy training in Washington, DC, and the next day talked to congressmen about financing research on mental health issues in people with Parkinson’s. Next summer she and her husband, Charlie, will speak at a Parkinson’s Awareness event in South Africa on the topics of motivation and care partners. Afterward, they’re planning on a seven-day Camino-type walk in the hopes that the press will follow in order to advocate for Parkinson’s and encourage everyone to enjoy the outdoors.

Davis_Phinney_Foundation_Parkinsons_Policy_Forum_2019_carol_Clupny
Visit to Oregon Congressman Greg Walden during Parkinson’s Policy Day on Capitol Hill 2019 (left to right: Charlie Clupny, Congressman Walden, Nancy Crocker)

Create Community

Preventing social isolation and creating community with people who care about you are ways that help you live better today. Even though Doug Pickard in British Columbia doesn’t have Parkinson’s, as a personal trainer he was inspired by a friend who had Parkinson’s to design exercises to improve movement. Twelve years ago, he created the program “Taming the Dragon”, specific exercises to improve the movement of people with Parkinson’s. Today he is a trained PWR! Moves (Parkinson Wellness Recovery) and Rock Steady Boxing instructor who is inspired every day by the people in his classes. Not only do his exercise classes help decrease the progression of Parkinson’s, but the sense of community that has formed is also a source of joy and inspiration for him. In addition, the power of this community has been demonstrated as more money has been given for Parkinson’s research due to their lobbying efforts.

Click here to watch a video to see how fun Doug’s Rock Steady Boxing classes are.

Click here if you’re interested in finding community through Rock Steady Boxing, a program focused on exercises specifically designed for people with Parkinson’s. All you have to do is enter your zip code to find your closest class location.

Lead a Support Group

Since there was not a Parkinson’s support group in her small town in Oregon, Carol jokingly said, “What’s a girl supposed to do without a Parkinson’s support group?” Her answer: form one. Her current goal is to encourage the support group to move from meetings into action by doing things such as creating a walk to raise funds for research.

Click here to learn tips on how to form your own support group.

Click here if you are interested in learning how to start a women’s only Parkinson’s support group.

Educate

When Carol worked as a speech pathologist and was in charge of organizing team meetings, she knew it was a good meeting when people stayed afterward to talk. Similarly, after returning from her 4,300-mile book tour, she said that after book signings and speaking engagements, no one wanted to leave. People were engaged and wanted to stay longer to learn from each other about a common experience.

Carol Clupny - Davis Phinney Foundation Ambassador
No one wanted to leave.

Hopefully, through sharing the stories of these Davis Phinney Foundation Ambassadors, you can see that everyone has something to give back, and everyone has the power to make the Parkinson’s community stronger. Whether it’s encouraging someone on the phone, volunteering, modeling exercise to live well, or writing to your congressman, we are more powerful together.

 

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