The Parkinson Alliance Blog

Archive for the ‘Guest Blogger’ Category

Parkinson’s Support Groups: Strength in Numbers

Wednesday, November 1st, 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.

Patient-Centered Approaches for the Newly Diagnosed

Tuesday, August 1st, 2017

Newly Diagnosed with Parkinsons?

Our guest blog post is by Gil Thelen, who is a Parkie, class of 2014. He is Executive Director, Florida Society of News Editors; a retired newspaper editor and publisher; and past founder of the PD SELF training program in Tampa. He is completing a book about his journey of discovery with PD titled “Counter Punch: Sparring With Parkinson’s. His website is https://shufflingeditor.com.

We “Parkies” never forget the date that we heard the words.

“You have Parkinson’s disease.  Progressive and incurable. But it is treatable.”

Too often, the words that follow diagnosis are merely to fill a prescription and return in three months.

No counseling about managing the condition. No mention of what to tell, or not tell loved ones, friends or employer. No pamphlets explaining Parkinson’s. No advice about trustworthy information, online and off. No mention of support groups to join.

Lesson learned:
There is no system of care to enter if you have Parkinson’s. That’s the case unless your treatment is from an extremely small handful of highly specialized and patient-centered institutions.
It’s all on you. You live by your ingenuity and perseverance.
Good luck.

That grim lesson won’t stand for some fed-up Parkies. They are creating patient-centered approaches to management of their condition.

University of Colorado Neurologist Benzi Kluger is field-testing an umbrella organization that provides education, counseling and assistance to Parkies who want to write their own care plans. Test sites are Denver, San Francisco and Alberta.

PDF consultant Diane Cook is field-testing a different model. It lacks an umbrella organization but trains Parkies to become captains of their own health-care teams. Her program is PD SELF (Self-Efficacy Learning Forum). Reports are encouraging from the nine test sites finishing year one.

Here in Tampa Bay, committed members of PD SELF want to spread key lessons they’ve learned: You can counter punch PD and retake some lost ground of competence.  You can live well despite PD.

Living well entails aggressive self-management, rigorous exercise, changed diet, mental conditioning and deep understanding of your condition.

I call the PD SELF veterans the “Special Ops” group. We are ready to share our experiences with newly diagnosed Parkies.

Our challenge is to find newly diagnosed Parkies and connect.

We are committed. We will find our way. We have so far.

– Thank for Gil, for your Parkinson’s voice.  For more information, see PD SELF (Self-Efficacy Learning Forum). Another resource for the newly diagnosed is the 1-800-4PD-INFO helpline from the National Parkinson Foundation and their Newly Diagnosed resources. Also see A Practical Guide on Talking about Parkinson’s at Work from the Michael J. Fox Foundation.