Objective: Create a practical and culturally sensitive guide — considering differences in fitness, age, symptoms, medical conditions, location, etc. — to help people with Parkinson’s exercise.

Background: At least 6 million people live with Parkinson’s. Outside of the shared disease experience, they vary widely in age, sex, race, ethnicity, socioeconomic status and more. Yet resources are not generally tailored to unique individuals and communities. Exercise is recommended for everyone to help manage symptoms and potentially slow disease progression. But person-centered guidance on exercise is lacking.

Method: 1. Assemble a team of authors from various healthcare fields, including a movement disorder specialist/lifestyle medicine physician, two physical therapists and an occupational therapist.

2. Collate common exercise questions and themes from personal experience and The Michael J. Fox Foundation networks.

3. Host a “listen and learn” focus group to understand experiences of 11 community contributors — 5 women, 4 Black or African American, 1 Hispanic — ranging in age from 40s to 70s; living with PD for 5 to 20+ years.

4. Draft guide, balancing clinical and research information with personal stories.

5. Gather focus group feedback on content, layout and design.

6. Publish across broad channels and networks.

Results: In the first month, the guide was downloaded >19K times. Several clinicians and community leaders requested print copies for their office, support groups, health fairs and more. About the guide, Bernard Coley, co-chair of Special Interest Group-Black Diaspora, whose spouse lives with PD, said, “Communications, guidance, representation and collaboration done right. An outstanding publication which we will work to get to those in the PD under-engaged community.”

In developing this guide, we learned:

1. As in research, people with Parkinson’s should be equal partners in resource creation. Engage diverse groups early and often; listen with humility.

2. Individual stories are the draw; they are what resonate most. We used a story-telling approach here and will enhance efforts within upcoming resources.

3. The community wants to see themselves throughout resources, represented in their own photos and those of others living with PD.

Conclusion: Partnership and collaboration across the healthcare and patient community are keys to developing accessible and appropriate resources for the diverse Parkinson’s population.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/exercise-for-parkinsons-building-a-person-centered-resource-through-partnership/