“I Have Lost Confidence With Parkinson’s, But This Experience Boosted It.”


Joan is a Chicago-area resident who lives with Parkinson’s. Like many people with Parkinson’s, her daily activities have been impacted by the disease, and she spends less time out-and-about than she used to. For some people with Parkinson’s, this sort of separation from friends and family can lead to feelings of social isolation. “Parkinson’s can make you feel like you’re disappearing,” Joan says.

To address such feelings of isolation, Lundbeck and the Davis Phinney Foundation partnered to launch “Sidekicks™: Uniting Youth and People with Parkinson’s.” This intergenerational program, offered in collaboration with leading Parkinson’s organizations, brings together school-aged youth and people with Parkinson’s through a series of interactive art and story-sharing workshops. Sidekicks helps people with Parkinson’s share their experiences while fostering positive, meaningful connections with youth.

Sidekicks launched one year ago and has brought together more than 150 youth and people with Parkinson’s, plus an online community more than 15,000 strong. Already, data indicates Sidekicks participants are experiencing the benefits of the program. Initial survey data presented this month at the World Parkinson Congress (WPC) 2019, in Kyoto, Japan, shows participants with Parkinson’s reported (on average) a 19 percent decrease in social isolation and (on average) a 17 percent increase in social connectedness after participating in the program. Meanwhile, Sidekicks youth participants reported more positive attitudes regarding people with Parkinson’s after participating in the program.

According to Tom, a person with Parkinson’s who helped facilitate a Denver Sidekicks program: “One of our recent Parkinson’s participants shared some joyful tears just having the opportunity to get out and spend time with the children. As the sessions went on, she built a very special bond with her student partner.”

Social isolation is common among people with Parkinson’s, according to research conducted by the Michael J Fox Foundation. The Fox Insight study, an online longitudinal clinical study, found that 35 percent of 24,000 respondents reported dropping many of their activities and interests; and more than half of 20,000 respondents reported feeling depressed in the previous month.

“Even though I am very involved in the Parkinson’s community, I can still feel lonely,” admits Mardel, a person with Parkinson’s who participated in the Denver Sidekicks program. She says she didn’t realize how much of an impact being around her Sidekick would have. “I have lost confidence with Parkinson’s, but this experience boosted it,” she says.

Because Sidekicks has been so well received, Lundbeck and the Davis Phinney Foundation are expanding it, offering it in 10 markets in 2019. To learn more, visit ParkinsonsSidekicks.com and join the Parkinson’s Sidekicks Facebook community at www.facebook.com/ParkinsonsSidekicks.

Data used in the preparation of this article were obtained from the Fox Insight database https://foxden.michaeljfox.org on May 31, 2019. For up-to-date information on the study, visit https://foxden.michaeljfox.org.

The Fox Insight Study (FI) is funded by The Michael J. Fox Foundation for Parkinson’s Research. We would like to thank the Parkinson’s community for participating in this study to make this research possible.

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