Educational events connect local Parkinson's communities with resources and support

Thursday, October 29, 2015 1:00 am | Updated: 4:33 am, Sat Oct 31, 2015.

(BPT) - More than one year ago, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and AbbVie launched Partners in Parkinson’s, a strategic health initiative to provide resources to help the nearly 1 million Americans living with Parkinson’s disease (PD) optimize their care and live well with the disease. To date, nearly 8,500 people have attended Partners in Parkinson’s events across the country, and the free, day-long program is coming to one more location in 2015, and six additional U.S. cities on Saturdays in 2016.

Parkinson’s is a chronic, neurodegenerative disease with highly variable symptoms and progression. No two cases of PD are alike, making personalized care essential to better long-term outcomes. Yet, too few patients and their caregivers connect with resources that help them understand their care options and tailor a plan that evolves as the disease progresses. A 2014 Harris Poll survey found fewer than half of Parkinson’s patients and caregivers feel informed about where to turn for support.

Partners in Parkinson’s events take place on Saturdays and offer a comprehensive full-day program designed to help patients and families learn more about the disease, including what to expect as the disease progresses from a new diagnosis to more advanced stages. Event attendees have shared overwhelmingly positive experiences and report feeling more empowered after connecting with local Parkinson’s specialists and learning how they can get involved in their own PD community.

Pennsylvania resident Kate Harmon’s father, Bob Harmon, was diagnosed with PD in 2006 at age 58. Kate and Bob attended the Partners in Parkinson’s event in Philadelphia last year and were amazed by the support and resources available to benefit local patients.

“My dad is very active in his own disease care, but it hasn’t always been easy to find the right resources, and not everyone managing Parkinson’s disease has the support they need,” Kate says. “These events offer patients from early to advanced stages of the disease the chance to connect with a community of support, which is crucial with a complex disease like Parkinson's.”

The educational events are free of charge and feature panel discussions on the variability of PD, the latest updates in research toward improved treatments, and how to make the most of an appointment with a movement disorder specialist (a neurologist with specialized training in Parkinson’s disease). Breakout sessions cover how to build a health care team that addresses the many aspects of life with Parkinson’s and offer the opportunity for attendees to submit their own questions about the disease to a panel of experts. At the event’s resource fair, patients and caregivers can connect with local support and exercise groups, health care providers and advocacy organizations, all based in their own local community.

Debi Brooks, co-founder and executive vice chairman of The Michael J. Fox Foundation, says the events have fostered new connections within Parkinson’s communities.

“We’re excited to be connecting with patients and caregivers around the country — many of whom are new to us and have never had a chance to be at an event like this,” Brooks said. “Once folks come out, they’re amazed at the information and support that’s available to help them live well at every stage of Parkinson’s.”

To find an upcoming event near you, visit www.partnersinparkinsons.org.

http://www.michigansthumb.com/online_features/senior_living/article_e685ac66-3dea-53a0-bd9a-a710449a662e.html