The Parkinson Alliance Blog

Parkinson’s Support Groups and our Latest Survey: Social Support and Parkinson’s Disease: The Patient’s Perspective

Social support is a necessity for everyone, including people with Parkinson’s. The goal of our latest survey, Social Support and Parkinson’s Disease: The Patient’s Perspective is to better understand the issues surrounding social support from the perspective of the person with Parkinson’s. You can download a free PDF of the complete survey report here.

Many participants commented on how important support groups are, both in person and online, to their well being.  “Thank God for my PD support group, they really care and are everything to me … they talk to me about PD in a non- judgmental way.”  We were also surprised, however, at the number of participants who didn’t know how to find support groups in their area.

Some of the major Parkinson Disease foundations offer information to connect you with area resources.  The Parkinson’s Disease Foundation keeps a listing of nationwide Parkinson’s support groups.  You can call them at (800) 457-6676 to ask for a referral or email them at info@pdf.org.  The American Parkinson Disease Association maintains a nationwide network of various information, including support groups. To find a support group in your area, first go to this webpage. Then enter either your zip code or state into the form and click Go.  A result page with additional links will appear.  Click the Resources & Support link.  Then, on that resulting page, click the link for Support Groups and click Support Groups again.

If you are unable to go to an area support group and/or want more daily interaction, consider joining an online group.  Doing a web search on “Parkinsons online support groups” brings up a variety of options.  Before joining a group, take a look around the site to see how active the members are and if it seems like a good fit.  Margaret is a member of My Parkinsons Team. Membership requires registration and is free.  Once you create a profile, you have the ability to check in each day and answer the question “How is your day? good, bad, so/so?”  You can comment on how others are doing, ask and answer questions, and even meet people who are in your area.  As you find yourself chatting with certain people on a regular basis, you can add them to your “team.”  A team can include anyone on the site that you’d like to keep track of and get to know better. A great thing about online groups is you can participate as much or as little as you want.

As one of our survey participants noted, “The importance of social support cannot be overrated. … It takes courage to reach out for support once physical symptoms or mobility are bad. … You must believe in your own worth as a human being, and continue to reach out to and encourage others as well.”

We welcome your comments.

– Margaret Tuchman & her blogging partner, Gloria Hansen

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