Why should I go to a Parkinson’s disease support group?

Why should I go to a Parkinson’s disease support group?

Support groups play a vital role in the lives of many people with Parkinson’s disease (PD) and APDA plays a vital role in providing access to support groups around the country. In general terms, a support group is a collection of participants who meet on a regular basis, facilitated by a support group leader, to discuss issues of mutual concern – in this case, PD. Beyond that basic definition, there can be much potential variability in the makeup of the group, the type of facilitation, and the content of the meetings.

APDA hosts and facilitates many types of support groups all across the country (and even online) and also has created and pioneered a unique psychosocial support model called the PRESSTM program (Parkinson’s Roadmap for Education and Support Services). This is an eight-week standardized program for people who have been diagnosed for less than five years. It combines psychosocial support with basic PD education and covers topics that include medication management of PD, the importance of exercise in PD, the impact of PD on relationships, and tips for daily living. We’ll talk more about different types of support groups below.

We strongly suggest you connect with a support group as soon as possible after being diagnosed so you can start benefiting from the information and camaraderie right away, but you can join a support group at any time – whether you were diagnosed 10 days ago, or 10 years ago.

You can contact your local APDA Information & Referral Center, or APDA Chapter to find out what type of support groups—including PRESSTM programs—may be taking place in your area, or call us at 800-223-2732.

This week, Dr. Rebecca Gilbert talks with three APDA support group leaders to get their input on why support groups are so important and what they can offer people with PD and their care partners. Sonja Vincola, LICSW, runs a Young Onset Parkinson’s Disease support group in Massachusetts and Raymond James, BS, RN, runs a more traditional support group in a senior center in Massachusetts. Gabrielle Austein, an MSW in training, recently ran a support group at APDA’s National Headquarters in Staten Island, NY.

Rebecca: What do you observe are the reasons that people are drawn to participate in support groups for PD?

Ray: One of the most common reasons for attending a support group is a quest for knowledge: to understand more about Parkinson’s. Many patients and families feel like it’s not possible to have all their concerns and needs met within a 15-30 minute appointment with a healthcare provider, so they seek out support groups to know more. I enjoy using my clinical and research background to answer questions for the group, but when more information is needed, APDA steps in with resources that I can provide. I also try to point to the plethora of educational symposia, research studies, expert panels, speakers and awareness events that are happening around the state.

Sonja: I facilitate a group for individuals with Young Onset PD.  Some of the participants are still working and may not have told employers, coworkers, or even friends of their diagnosis. Participants in my support group report that they appreciate a space where they can speak uninhibited about their situation and struggles. Additionally, they value talking with people who “get it” – all the details of the medications, doctors, symptoms, etc.

Gabrielle: Often after receiving a diagnosis of PD, people start doing a lot of research to find out about the disease. But this doesn’t do anything to address the emotional implications of the diagnosis. The initial draw to a support group is often the understanding that all group members are affected by PD. People might not have crossed paths otherwise are ultimately brought together by their mutual experiences with PD.

Rebecca: So it sounds like support groups offer education, community and empathy from those who understand the struggles of PD. 

Ray: Yes, I have found that attendees are able to speak to their personal experience and through that, uplift and educate others in a way that someone who isn’t going through the experience is unable to do. A person may be able to talk about how they are handling a tough challenge – maybe the tremor they have is bothering them at work or during social gatherings, and someone else is going through that same experience. The way one person handles a tough issue like tremor for example, gives others a good idea of how they might handle the same issue.

Sonja: I agree, people who attend support groups gain a community.  I know that participants from my groups talk between meetings and some have gotten together socially.  Social connections like these can impact positively on health outcomes.  The support group helps build and maintain those connections.

Gabrielle: I could not agree more.  Support groups provide a secure and confidential space to discuss things that they might not feel comfortable discussing with anyone else, to share experiences – what works for them and what doesn’t – as well as have the opportunity to ask questions that may only be answered by people who also live with PD. Your doctor and the internet can provide facts, but in a support group you can learn from other’s actual experiences.

Rebecca: What can care partners hope to gain from a support group?

Ray: Care partners attend support groups because they both want to seek answers about how to best help their loved one as well as gain from the experiences of others. But there are also support groups specifically designed for care partners to address the unique needs and challenges they face as they try to be the best support they can be for their loved ones. The support group provides resources and an outlet to share challenges, fears, and methods for success.

Rebecca: As you all mention, support groups can provide a place for people with PD and their care partners with similar struggles to share their challenges and solutions. However, PD can vary greatly from person to person. For example, one person may struggle with urinary frequency whereas another may not experience this at all. One of the roles of the support group leader must be to explain this variability, and reassure the group that not everyone will experience all the struggles voiced in the support group.

Sonja: Absolutely. My group is for people with young onset PD, so it is more well-defined than other groups, but there is still much variability.

Ray: I think it’s important to note that when someone is seeking out a support group, he or she understands that not all groups are the same. Sometimes groups are segmented — there may be groups comprised of those who were diagnosed young, like Sonja’s group; other groups may be comprised of the newly diagnosed of all ages, or those who have been living with PD for a number of years. Segmenting the groups like this can help limit some of the variability inherent in a group of people with PD, although of course it does not completely eliminate variability. And sometimes, specified groups are not available and you attend a more generalized group that welcomes everyone.  Also, sometimes you may need to visit more than one support group before you find the one that feels right to you, so don’t give up if you don’t feel like the first group you go to is a “fit.”

Rebecca: On a related note, I often hear from patients that they do not want to attend a support group with people at varying stages of disease.

Sonja: A person with this concern may do well to seek out a support group comprised of a particular subgroup of people with PD, like those mentioned above. However, these specific types of support groups may not exist where you live and a group may be all-inclusive. I would encourage everyone to try a support group anyway, since much can be gained from listening to a wide range of experiences.

Gabrielle: Some people fear that when they go to a support group they might see someone with more advanced disease, and don’t want to be frightened by the possibilities of what might be coming down the road for them. However, one thing we know about PD is that the disease progresses so differently for each person and we can’t predict the future, so attending with that in mind may mitigate some of the concern.

Rebecca: What are some other reasons that people may be resistant to attend support groups?

Gabrielle: Some people will say that they don’t “need” to participate because they have enough information, are doing well, or won’t benefit from hearing other experiences. Many may be uncomfortable by the idea of sharing their thoughts and feelings. Others are concerned that they will not be able to relate to the other members of the group or are nervous about joining a group in which members have already developed deeper bonds. But you won’t know what you are missing unless you try so I encourage you to give it a shot.

Rebecca: How else might support groups differ from each other?

Ray: Some groups may be led by a peer, who have a first-hand understanding of the issues, while others may be led by healthcare professionals who bring their expertise and skills to bear. Some groups focus on education and have speakers that can enlighten you about various aspects of Parkinson’s, while other groups aim to be more of a place of refuge to share deeper struggles.

I think it’s always good to give a call or send an email to the support group leader to check out the group ahead of time, so going isn’t such a mystery.

Rebecca: What do you enjoy/find rewarding about leading support groups for people with PD and/or care partners?

Gabrielle: The elevated sense of warmth and community. Most group members are extremely kind and hungry for connection. Members are respectful and conscious of letting others share. I also love when people utilize the connections to socialize outside of group and meet for other activities!

Sonja: I agree. I find it most rewarding when I witness participants establishing connections beyond the group.  As a psychotherapist treating people with depression and PTSD, many of my clients are socially isolated.  In sessions, we work a lot on how to increase those connections.  Seeing it happen in the support group confirms for me that it is possible.

Ray: In my years as a support group leader, I have found inspiration in the lives and stories of those who attend. I really enjoy helping the members of our group arrive at those “a-ha” moments that turn on the proverbial light bulb. It’s excellent to see when others feel open enough to share their personal experience, to relax and let their guard down a bit. I try to facilitate more when a person raises a bad situation that doesn’t seem to have any resolution, and to point toward ways in which they can meet that challenge head on and/or to source solutions from our group. It’s rewarding to see how coming to a support group can bring light into what otherwise feels like a dark and lonely place, to bring people to a level of understanding, freedom, and human connection they didn’t have prior to coming.

Note to readers: If you don’t live near an in-person support group, have challenges physically getting there, or feel like you could use some support but are not sure what’s right for you, APDA has partnered with Smart Patients, an online discussion forum for people with PD and their loved ones. Members in this online forum share help, advice and information about treatments, symptoms and side effects. It can serve as a helpful alternative or also supplement your in-person support group meetings.

 

Tips and Takeaways:

  • APDA offers a wide variety of support groups across the country. Click here to find one near you.
  • Support groups offer educational opportunities as well as a sense of community.
  • Support groups allow participants to learn from one another as they encounter similar struggles.
  • Some support groups are segmented by age at diagnosis (ie, diagnosed at a young age) or by disease progression (i.e., newly diagnosed, or diagnosed within five years); other groups are more general. It may take more than one try to find a group that’s right for you.
  • Care partners need support too, and can often attend the regular groups, or seek out specialized groups tailored for their specific needs.
  • If you’re interested in an online support system, APDA offers Smart Patients where you can connect virtually with others in the PD community.

Do you have a question or issue that you would like Dr. Gilbert to explore? Suggest a Topic

Dr. Rebecca Gilbert

APDA Vice President and Chief Scientific Officer

Dr. Gilbert received her MD degree at Weill Medical College of Cornell University in New York and her PhD in Cell Biology and Genetics at the Weill Graduate School of Medical Sciences. She then pursued Neurology Residency training as well as Movement Disorders Fellowship training at Columbia Presbyterian Medical Center. Prior to coming to APDA, she was an Associate Professor of Neurology at NYU Langone Medical Center. In this role, she saw movement disorder patients, initiated and directed the NYU Movement Disorders Fellowship, participated in clinical trials and other research initiatives for PD and lectured widely on the disease.

A Closer Look ArticlePosted in Living with Parkinson's

DISCLAIMER: Any medical information disseminated via this blog is solely for the purpose of providing information to the audience, and is not intended as medical advice. Our healthcare professionals cannot recommend treatment or make diagnoses, but can respond to general questions. We encourage you to direct any specific questions to your personal healthcare providers.