“Parkinson’s Shmarkinsons”: A New Parkinson’s Image
Bonnie Clancy is a PWA: Person with Attitude. She’s also a PWP, but that’s backseat to her being a PWA! Bonnie’s modus operandi in life has always been to make things happen. She was a private trainer at an exercise studio she owned for 10 years. Health, exercise and fitness has always been a way of life for her. She combined her culinary skills with her commitment to healthy eating and became the founder of a nutrient-dense “power” cookie company. She sold “Bonnievilles” cookies to upscale supermarkets and grocers around New England. Hard work, seeking opportunities and leading a healthy lifestyle; these hallmark characteristics just didn’t compute with hearing the words, “You have Parkinson’s”.
Bonnie heard those words 7 years ago; she felt devastated. She imagined the world she knew and worked so hard to create would be turned upside down. She felt paralyzed but this didn’t help her situation and wasn’t her usual style of meeting life’s curveballs. She soon returned to her familiar style of coping: taking action. Bonnie tried to learn all she could about PD. Unfortunately, everywhere she turned she saw negativity. Photos of individuals with PD captured disability. She turned to online articles about PD. The words that jumped off the pages were “battling”, “suffering” and “progressing”. Her fears grew for her future wellbeing. Bonnie wondered how she could stay hopeful in the context of these pervasive unhopeful images? She described that “even the word ‘Parkinson’s’ gave me a visceral feeling”.
Bonnie’s modus operandi in life had always been to make things happen. How could the woman to created and marketed a “power cookie” now sit back and fall into despair? She knew she had to find a way to adapt to the diagnosis, accept it and then do something to rebrand the image. “Parkinson’s Shmarkinson’s” emerged as the antidote to fear and sadness. The project felt to her like “taking a big exhale”. As an exercise trainer she knew the value of “a big exhale”. It allows you to power up for the next challenge.
Parkinson’s Shmarkinson’s offers a series of good news, feel happy, powered up short videos that can be viewed on Instagram. Bonnie chose the name because it made her feel good; as though “I’ve got this!”: not “It’s got me!”. The videos are meant to inspire, to show people who are doing well. One man plays a love song to his wife on the piano. A woman jumps rope with dazzling precision and speed. Another woman shares her pearls of wisdom living with PD and then does a virtual exercise workout that looks like Boot Camp! A man “crushes it” in a gym. A woman demonstrates fine balance and strength on a peaceful paddle board ride in beautiful, remote setting. Watch them!
Bonnie’s goal in launching Parkinson’s Shmarkinson’s is to help others who, like her, may be overly frightened by some images of PD. This raises the question of how we portray the illness in the media. Is there a way to be realistic about the range of symptoms one might experience but also the variability of the expression of PD? We know a lot about strategies and lifestyle changes the PWP can embrace to improve outcomes and wellbeing. Does social media portray a balance of these more positive images?
I facilitate a group for Women with Parkinson’s. One participant shared this story. In an initial meeting with a neurologist, she was given the Parkinson’s diagnosis, then told all of the problems that could unfold, such as losing her balance and falling. She felt panicked. She asked if she could continue bike riding; her passion. She was told “Not a good plan, you might fall”. She left the appointment feeling sad and scared. Bike riding was her therapy. It not only was it how she got around, it made her feel good. Like Bonnie, she made an action plan for herself. She found a new neurologist with a very different approach. The new neurologist supported her belief that if she continued to bike ride she might fall, but she might not fall. She embraced the idea that she might not fall. Not surprisingly, she joined the practice of the second neurologist who provides caution when needed, but supports her spirit of adventure as well. Not only does she continue to ride but she started a team that rides every year in the New England Parkinson’s ride. To date, the team has raised over $35,000. That’s a lot to be proud of!
Professionals are starting to make a shift in how we label PD. There is a lot of support to refer to the illness as “Parkinson’s”; dropping “Disease”. There’s a lot of power in words. Word choice matters. Many PWP described that using the term Parkinson’s Disease focused too heavily on the disease state. How can you hold on to hope when you are living with “disease”? Break that word apart. Dis-ease. For many with Parkinson’s, symptoms may remain mild for a long time, and quality of life remains Similar to the philosophy that words matter, there is growing popularity in using the term he or she is a ‘parky’: “this just feels better” in Bonnie’s view.
“Parkinson’s Shmarkinsons” is a story about Bonnie Clancy, a woman with attitude. She wants to spread hope for those living with Parkinson’s. Our PD Center of Excellence featured Bonnie’s story and the video project in our monthly e-newsletter. The word is spreading. One woman in our Center is thinking about the video she’d like to contribute. She’s scheming up a plan with her adult children to hold “Parkinson’s Shmarkinsons” signs up around the globe. I’m thinking this could become a movement! Maybe you’ll be inspired to make a 1-minute (or less) video that captures joy and positivity, leaving fear and anxiety behind. It’s hard to say “Parkinson’s Shmarkinsons” without giggling or smiling. And that’s good medicine for all of us!
For those who wish to add a video to “Parkinson’s Shmarkinsons” send your 60 seconds or less video to Bonnieclancy@verizon.net. She posts videos on Instagram.
Lissa Kapust, LICSW presented at the Fourth World Parkinson Congress in Portland, Oregon and the Fifth World Parkinson Congress in Kyoto, Japan. She helped launch the Care Partner Lounge at the WPC 2016. She is a clinical social worker at the PD Center of Excellence at Beth Israel Deaconess Medical Center and also coordinates “WellnessWorks”, a series of exercise and education programs.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®