What is a support group?
"Parkinson Support Groups: Invisible Threads that Bind"
"We cannot live by ourselves alone.
Our lives are connected by a thousand invisible threads."
In the 1960s, they were revolutionary. In 2011, support groups are a mainstay in a rich, multi-faceted approach to Parkinson's care.
Parkinson's support groups promote a form of focused social interaction in which a small group of people with Parkinson's (and perhaps their caregivers and sometimes their friends), meet regularly with a facilitator. The purpose? To share information, address common problems, improve coping strategies and foster camaraderie.
The very act of listening and sharing offers each individual the opportunity to function more effectively, continue to grow emotionally with the challenge of their illness, and help with problems. The wisdom and the power of the group help to accomplish these goals.
Sharing challenges, sharing solutions
Individuals respond to a Parkinson's diagnosis with a variety of emotions: disbelief, anger, fear, embarrassment, depression, and anxiety among them. Participants come to a support group for many reasons, but all come hoping to improve their lives. Each participant is unique, as is the nature of their disease. Each brings to the table different coping skills and life experiences. They benefit from the group in different ways and at different rates. Yet, watching others cope with and overcome similar problems successfully often instills hope and inspiration. New members or those feeling particularly challenged - even in despair - are frequently encouraged by hearing others' positive experiences and successful coping strategies.
Moving out of the shadow of isolation
We are social beings with lives characterized by relationships with others. Thus, much of self-esteem is developed via feedback and reflection from others. Some distortions in the way we see ourselves and others are part of the normal pattern of living. Yet, we need to be watchful. These distortions can damage even our most important relationships. The support group provides a forum in which to safely talk about and test our perceptions.
A common feeling among people with Parkinson's is that of being isolated from others. Many experience great difficulty sustaining interpersonal relationships. They may feel unlikable and unlovable. The support group provides a powerful remedy to these feelings. For many, it may be the first time they feel understood and see similarities to others dealing with the hardships of Parkinson's. Enormous relief often accompanies the recognition that they are not alone. This is a special benefit of a support group.
Frequently, isolated people with Parkinson's feel that their behavior and responses in the face of the disease, are abnormal. Helping people see that their reactions are a normal response to a unanticipated life altering illness, is called normalization. Support groups provide an opportunity for members to improve their ability to relate to others and live far more satisfying lives as they meet the challenge of Parkinson's. Belonging to a support group can also provide a powerful healing factor as individuals replace their feelings of isolation and separateness with a sense of belonging, acceptance and sharing
Gaining knowledge enhances coping.
An essential component of a support group is increasing participants' knowledge and understanding of the common problems of Parkinson's. Explicit information about the nature of the shared illness is the keystone. Most leave the group far more knowledgeable about their specific symptoms and challenges than when they entered. This makes them increasingly able to help themselves and others with the same or similar problems. How is this accomplished? By group sharing and knowledgeable presenters. Along with the voices of the participants themselves - voices imbued with direct experience - presenters and speakers from outside the group, often professionals in specific areas such as voice therapy or current medication options, offer an important learning experience about various aspects of Parkinson's, treatment and self -help.
When we reach out to others, we reach in to the best in ourselves.
Perhaps one of the greatest strengths of Parkinson support groups is that they offer members a unique opportunity to help others. Often those with Parkinson's believe they have very little to offer others because they have needed so much help themselves. The result can be profound feelings of inadequacy. The process of helping others is a powerful therapeutic tool that greatly enhances feelings of self-worth. In addition, caregivers in the group not only learn about Parkinson's disease, but receive support for their efforts and share coping strategies and challenges with each other and with those for whom they are caregivers.
Support groups vs. psycho-therapy groups
A skilled support group facilitator models active listening, gives non-judgmental feedback, and offers positive support. Over time, members often pick up these behaviors and incorporate them. Facilitators strive to create a safe environment for group interaction and coordinate activities to help provide avenues of involvement for each participant.
The facilitator of a support group is typically not a professional therapist. A therapy group often includes the issues noted above, but in addition the focus of the group and qualifications and role of the therapist is different.
Like support groups, psychotherapy groups aim to increase the individual's sense of their own well-being. However, the therapist uses range of techniques based on experiential relationship building, dialogue, communication and behavior change. Some Parkinson's patients may find value in participating in both a support group and psychotherapy. However, most people with Parkinson's find great benefit in support groups alone.
The mystery of an unimagined life
No one's life unfolds exactly as they'd imagined. No one asks for a diagnosis of Parkinson's. No one puts "support groups" on their bucket list of things to do. Yet as Melville said, our lives really are connected by a thousand invisible threads.
The people we meet in Parkinson's support groups are connected by some of those previously invisible threads. In support groups, these unique threads are woven together as we share our stories. The groups help us to make connections, to remind us of the preciousness of each moment, and to appreciate more fully the deeper dimensions of giving and receiving. Some of what we learn in groups is immensely practical. Yet, when things are just as they should be, support groups also provide a portal to the mystery and wonder of life and the positive aspects that can be found in all things.
Author: Leonard M. Zunin, MD, Facilitator - Napa Support Group (PANC)