Objective: An online Parkinson’s community can provide a valuable forum and an effective means of support for individuals living with Parkinson’s disease (PD).

Background: Parkinson’s disease is a complex, neurodegenerative disease that not only impacts physical function, but also mental and emotional health, interpersonal relationships and overall quality of life. A diagnosis of Parkinson’s can be isolating and for many people, access to a movement disorder specialist is limited. It can be difficult to know where to turn for reliable information and support, and building a community or network can take time.
The Parkinson’s Foundation created and launched a new online community, PD Conversations, in January 2020. PD Conversations is unique in that it serves as an extension of the Foundation’s Helpline. This team consists of experienced and trained professionals who provide Parkinson’s information, resources and referral support in English and Spanish five days a week, via phone, email and online community.
While PD Conversations is primarily designed to offer peer-to-peer support, the Helpline professionals are active participants in facilitating conversations, answering questions and providing educational resources and support.
PD Conversations is divided into eight categories where people can ask questions, comment and generally interact with each other and the Helpline Information Specialists:
Newly Diagnosed
Symptoms of PD
Treating PD
Tips for Daily Living
Caregiving
Young Onset
General Discussion
Español

Method: Data from the Helpline database will be analyzed and will include the number of people active in the online community, general demographics, number of posts, and topics/categories with the most posts.
A survey will be created and distributed to PD Conversations community to assess satisfaction with and perceived value of the community for virtual support.

Results: To be determined: review and analysis of data will be performed in July 2020 at the 6 month timepoint.

Conclusion: An online Parkinson’s community can serve as a virtual support network providing valuable insights and information from peers and professionals. While living with Parkinson’s can be challenging and often isolating, that the road can be smoother when the journey is taken together.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/pd-conversations-creation-of-an-online-parkinsons-community/