Our personal journeys are marked with milestone moments: moments of gratitude, resilience, joy, and personal victories.
Collectively, these moments make up our own stories. Our stories can inspire and teach others; and when we share them with one another, we create connections that help us practice a positive mindset in living well with Parkinson’s.
In 2018, the Davis Phinney Foundation, in partnership with Lundbeck, launched the Sidekicks™ program to honor the power of story sharing, inside the Parkinson’s community and across generations. Each program brought together youth and people with Parkinson’s to participate in three creative sessions followed by a celebratory story-sharing showcase. Sessions began by teaching the youth about living well with Parkinson’s and the importance of a positive mindset.
Sidekicks has since been offered in 15 cities across the United States with positive findings on its impact shared with the Parkinson’s community. We also were selected to present Sidekicks findings at the 2019 World Parkinson Congress (WPC) in Kyoto, Japan, a unique meeting which brings together people living with Parkinson’s, researchers, clinicians, and advocacy groups in one place to share the latest discoveries and treatments alongside programs and initiatives that can improve the lives of those living with Parkinson’s. Among the Sidekicks findings:
- People with Parkinson’s reported feeling more socially connected and less isolated after participating in Sidekicks
- School-aged youth reported more positive attitudes regarding the traits of people with Parkinson’s. After the program, they reported their Sidekicks partners as wise, strong, and active. They also reported feeling calmer and more relaxed about interacting with people with Parkinson’s
2020 and a whole new virtual world
2020 brought a whole new dimension to the Sidekicks program when we, like the rest of the world, were forced into our homes and virtual rooms with our community. Since widespread COVID-19 safety measures began in March, we’ve worked with Lundbeck and collaborating Parkinson’s organizations to continue offering Sidekicks in a modified version that can be done anywhere, anytime, and with a partner of any age.
This more accessible program format has been highly meaningful to our Parkinson’s community and beyond. Over the past seven months, we’ve been proud to help foster creativity and connections by providing more than 240 sets of Sidekicks instructions and art supplies to interested participants. We’ve also been inspired by some wonderful stories that came out of their Sidekicks participation! Read one of these stories at the end of this post.
Changes for 2021
Amidst COVID-19 and other factors, the Sidekicks program will conclude its live in-person programming at the end of this year. Full on-demand, downloadable Sidekicks activities will remain available at ParkinsonsSidekicks.com for local support groups and others who wish to participate at home or in virtual settings. Resources include:
- Planning guide with ideas on how people can organize and complete a virtual program
- Downloadable instructions cards available for three diverse art projects (with supplies intended to easily found from home)
It’s been a wonderful three years offering live Sidekicks programming, and we wouldn’t have been able to make so many connections through art without our co- presenter and sponsor, Lundbeck, as well as our collaborating partner organizations: American Parkinson Disease Association, Parkinson’s Foundation, Parkinson & Movement Disorder Alliance, and The Michael J. Fox Foundation. We offer thanks for a terrific collaboration.
Creating Joy with Sidekicks
Written by Nancy Signer, person living with Parkinson’s from Knoxville, TN
“This is the worst spring break ever,” wailed Elisabeth. “Yeah,” chimed in the two younger blond-haired sisters. “We can’t even go to the store.” Thus began our COVID-19 summer of art, tai chi, and story writing.
Having just completed an acrylic painted rock, I shared it with the girls and asked if they were interested in learning to make one. “Oh, yes,” they eagerly replied. “Ok, how about this Saturday? It’s warm enough that we can work in the garage and sort of be “outside” in compliance with social distancing.”
So Saturday afternoon at 1 p.m. became our time to create and learn. Beginning with painted rocks and wine bottles, the girls and I were off on an artistic adventure. We explored lots of art projects, including poured acrylic painting and chain acrylic painting. We made slime, puffy sidewalk paint and glow jars. T-shirts and tote bags got tie-dyed using a unique method with sharpie markers and alcohol. Button bracelets were a little difficult because of the sewing, but the leftover buttons made great tree pictures. Flip flops were fashioned with water balloons. Mother’s Day was celebrated with decoupaged flower pots with the girls’ pictures. And who knew that clothes pins could make such beautiful wreaths—sunflowers, beach and patriotic themed. Making Father’s Day special was easy with the “sister’s garden” picture. Speaking of gardens, the girls’ painted fairy gardens were precious. We created our share of hanging art too—sun catchers and faux stained glass. Time capsules documenting their COVID-19 quarantine were also created and buried.
Somewhere in the middle of all this, we began tai chi lessons. Tai chi for arthritis proved just the right challenge for the girls. Beginning with a brief history of qigong and tai chi, Elisabeth, Abbie and Anna Leigh were on their way to enjoying the relaxation and discipline of tai chi. Setting the goal of end of summer break for a presentation to their parents, the girls diligently practiced the graceful moves.
The first Saturday in August was presentation time! Bob and Rochelle looked on as the young ladies explained the tai chi greeting—right hand raised in loose fist representing power and might, left hand raised in universal greeting of hello and friendship, left thumb crooked over fingers to show humility. Place right hand in front of chest, cover with left hand—bow to opponent to show respect. This greeting begins and ends every tai chi class or program. Next, Elisabeth led the group in the first 6 of 18 tai chi qigong movements, followed by Abbie with 7-12, and finally Anna Leigh with 13-18. The program ended with performance of part 1, tai chi for arthritis.
But art and movement weren’t all the girls expressed an interest in. After showing them the books I had written, illustrated, laminated and bound for my grandsons they were eager to write their own stories. Teaching them using the storyboard method of writing, each girl produced her very own book. Focusing on varied sentence structure and usage of “strong” verbs, illustrated versions of the girls’ adventures came to life. Completed books were given to each girl during the parent program.
Thus was the summer of 2020 spent with my “adopted’ granddaughters. Getting to know each girl—recognize her personality and charm, and watch each of them mature in their artwork, tai chi skills and writing ability was my saving grace in getting through this isolation and accompanying stress. Thank you, Rochelle and Bob for sharing them with me.
Visit Facebook.com/ParkinsonsSidekicks to learn more and join the more than 60,000 people who have engaged with Sidekicks content to date. You can strengthen an existing relationship or foster a new connection from any location – maybe even gain a new Sidekick!
Featured photo by Chris Ocken, Copyright 2018