The Parkinson Alliance Blog

Archive for the ‘Parkinson’s Support Groups’ Category

Parkinson’s Support Groups: Strength in Numbers

Tuesday, July 11th, 2017

Guest blog post by Jeffrey Wertheimer, Ph.D., ABPP-CN, our Chief Research Consultant and Chief of Neuropsychology Services at Cedars-Sinai Medical Center, Los Angeles, California

Parkinson's Social Support

Support groups for individuals with Parkinson’s disease (PD) and their care providers can play a key role in helping individuals cope with the progressive changes and variability of PD symptoms. As a clinical neuropsychologist, I have had the pleasure of being invited to speak at several support groups in the PD community, including support groups for 1. individuals with PD alone, 2. care providers alone, and 3. a combination of both individuals with PD and their care providers.

I have found that a key element to a successful social support group experience is “fit.” Like medications for an individual, the composition of the social support group has to have the right chemistry for optimal benefit. For many individuals, social support groups are very helpful in obtaining education and feeling supported; support groups can strengthen resilience and inspire both individuals with PD and care providers. Support can take many forms, including 1. practical guidance related to managing day-to-day activities, learning about practical coping techniques and accessing resources in the PD community, to 2. general emotional support.

Groups can have different formats, including, for example:

  • Size: small groups to large groups
  • Structure: from structured lectures from experts in the community to less structured general conversations led by a PWP or care provider.
  • Location: community-based resources, such as hospitals, community centers, and churches to family living rooms at a participant’s home.

Online: On-line or internet resources are also an option for many. A web-based community including numerous forums can serve as significant support for many.

As for preference of formats, I have heard from many participants who have attended different types of groups that a semi-structured group is preferred, a group in which there is a focus on a particular topic while still having the opportunity to process the topic and discuss other pertinent matters that may be of interest. Further, group participants have emphasized the importance of having groups that are uplifting, not just focused on the challenges that come along with PD.

When I have asked about the perceived benefits of a support group, most consistently, I hear that social support groups help to alleviate the feelings of disconnection and isolation, at least to some degree. Almost invariably, individuals have indicated that support groups help participants feel validated and connected with a community. It has been very clear that for many, expressing their voice in such a venue has been empowering and meaningful.

Themes: Some examples of themes that have come up in support groups have included:

  • New treatment options
  • Exercise
  • Nutrition
  • Effective coping techniques
  • Depression and anxiety
  • Cognition
  • Pain
  • Apathy
  • Speech and swallowing
  • Caregiver well-being
  • Loneliness and challenges with support systems
  • Living optimally with PD: Tips for healthy and meaningful living
  • The current status of clinical research for individuals with PD (medications; coping techniques; treatment options; etc.)
  • General supportive conversation about a topic of interest

Additional Considerations:
Some groups may be a good fit for some, while other groups may be a better fit for others. If one is not comfortable with the group, or if one does not find benefit from a group, it is recommended to try a different group that may better suit the person’s need. Furthermore, if a support group format does not meet the needs of an individual, consideration for one-on-one support with a mental health professional may be of help.

For general thoughts about social support for individuals with PD and related recommendations, it may be thought providing to read The Parkinson Alliance’s recent survey report designed to gain insights about social support for individuals with PD. The report can be found here. As another resource, should one want to locate a support group in closer proximity to where they live, the Parkinson’s Disease Foundation has a resource to call to assist in trying to connect someone to a support groups in one’s area: (800) 457-6676.

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

Thursday, April 13th, 2017

Social Support and Parkinson's Disease: The Patient's Perspective image

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