Looking Forward, Moving Ahead!
Support Group Leaders Manual

A support group?

"No, thanks. That's not for me."

Does this sound familiar?
Perhaps it was your own reaction when someone first suggested that you join, or start, a Parkinson's support group. The idea of a "support group" may have made you uneasy. You may have objected to the idea of sharing your problems with others. And who needs other people's problems?

However, a PD support group is not a problem exchange.
Nor is it a place to go in order to feel more burdened-or blessed. Let us be clear from the start about what a PD support group is not:

• A PD support group is not a therapy group.
• A PD support group is not a "12- step" program.
• A PD support group is not a substitute for medical treatment or health counseling.
• A PD support group is not a replacement for family and friends, or other close relationships.

This is not to deny the need for family or personal counselling and other professional supports. And, although the support group cannot provide those things, it can be a resource for finding them.

Hopefully, the above has already eased your mind somewhat. Your role as support group leader or member is not as "heavy" as you might have thought!

So what is a PD support group?

1. A PD support group is a self-help group.
   It is run by and for people who have in common a particular challenge or life situation. They are willing to talk freely and to trust openly in the good will of the other group members.

2. A PD support group is a place to be yourself.
   The most difficult "step" is walking in the door. The "program" is about making yourself and others feel welcome and accepted. It means knowing that your privacy and confidentiality will be respected.

3. A PD support group is a source of information.
   Its members are a treasury of practical experience!
   They are also great collectors of articles, newsletters, books and other information about PD-who enjoy sharing them with others.

4. A PD support group is an added circle of friends.
   Here is the place to talk, laugh and cry about life with PD-with people who will listen, laugh and cry, too.

   [This can save much "wear and tear" on family and other relationships!]

To summarize, a PD support group is an informal, self-managed organization of persons with Parkinson's and their caregivers whose purpose is to share information and offer mutual support in a spirit of self-acceptance. It is also a place where other family members and friends can feel welcome and supported.

Another way of saying it is that, in a support group, persons with PD and their caregivers become "prosumers." To be a prosumer is to be both needed and empowered, in a most meaningful way. It means being not only a better equipped consumer of medical services and products, but also a uniquely qualified provider of practical, real life wisdom to others.

No one is an "expert"-but everyone has experience to share!

Finally, each PD support group is as unique as its membership. The interests and capabilities of support group members vary greatly, and may change over time. It is not "sameness" that counts, or meeting some standard. Rather, it is making the most of what each group has to offer to its members at any given time. This is the role of the support group leader.

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