The Summer 2010 issue of the Young Parkinson's Newsletter begins a new series on networking with an article about finding a support group. The article focuses on the mechanics of searching for and evaluating a support group to determine if it is a good fit. However, the newsletter format is too brief to address a more fundamental question: What is support supposed to look like?
It has been my experience that most support for early life PD falls into a trap that snares most disease-specific groups. Most often groups are developed in a top-down fashion by the medical community. The common feature is programming that comprises expertise in areas directly affecting disease management. Available support groups are typically very heavy on information and and often feel less helpful for providing insight into living with the daily challenges of the disease. The latter requires a bottom-up function that I think is more consistent with what most people would call support.
When I ask friends about support, I nearly always hear them describe a network of family members and close friends they trust and can access very rapidly. Some of the non-family resources share a commonality such as proximity (neighbors), background (co-workers) or interest (church, civic groups). However, rarely is the link to any person in a given support network so limited that interaction is completely focused on the neighborhood, work, or organizational affairs. One can talk to anyone in their support network with a reasonable assumption that the individual will listen to and understand them in a manner that transcends the initial point of commonality. In some cases, advice is desired and actively sought but the fundamental quality of support is that of closing the gulf of loneliness that can descend when one is challenged by life events. No one wants to feel alone.
I believe that one reason so many individuals with Parkinson's find disease support groups so challenging is that they inform but may be less focused on interpersonal support. They are predicated on the axiom that knowledge is power. However, knowledge in the absence of a connection that endures longer than the 90 minutes of the meeting lacks the emotional nourishment that diminishes the isolation a person with PD lives with each day. It is well to understand the mechanics of PD and how one's meds work but this information is available in a number of places including this website. Truly supportive relationships are in far smaller supply. This is an active process individuals with PD must initiate for themselves.
Perhaps more people would find groups a true source of support if they viewed them from a bottom-up perspective. When folks living with early life PD gather in any room, they bring a collective expertise in living with the disease that surpasses that of the speaker of the month. There is a place for speakers but there should also be time for the real experts on living with Parkinson's to share the wisdom they possess.
A successful support group meeting is one in which everyone has an opportunity to teach by sharing their experience and to learn through hearing what others share. These do not have to be soul-baring moments. All that is required is honest exchange. Even the simple act of getting the phone number of someone else whose life was changed by Parkinson's is enough to build a network of individuals who understand. Real support does not come during the meetings, it comes when individuals stay in touch during the days that pass until the group again assembles. Support comes when a person develops the same kinds of reliable networks that every human requires. It comes over a cup of coffee or a phone call.
True support occurs when a person begins looking up.