Why Support Groups?
By Maria Linde, RN, Board Member of the Washington State Chapter of APDA, Past Coordinator of American Parkinson Disease Association Information & Referral Center
From its very inception, the American Parkinson Disease Association has financially and in its mission encouraged, initiated and proclaimed support groups. When I became the coordinator of the Parkinson Information and Referral Center in late 1979, the idea of starting support groups in this area became a primary goal. With encouragement from some wonderful persons in Bellevue/Eastside, the first Parkinson support group in this state was formed. During the 1980's, support groups were started in other places: Seattle (affiliated with Group Health), Everett, Kirkland, (Young Onset), Puyallup, Whidbey Island, Anacortes, Sequim, Olympia and Bremerton. I would venture to say that the State of Washington was among one of the first where support groups for Parkinsonians and their families were formed. I felt and continue to feel that the group process provides an excellent forum for growth. You come to know that you are not alone and you learn new skills. Where but in a support group do you learn that satin/silk bedding allows you to turn ever so much easier in bed? You find wonderful people with compassion, courage and humor.
You may have heard that Support groups can be a "depressing" experience for some. Why can "support" be a negative experience? There are people who do not like "groups" for whatever reason and this is a fact of life. Furthermore, if you come to a group and start comparing, you are doomed to interpret the experience as negative. You can always find someone who's less affected by their disability, who has had the disorder for a longer time than you or parts their hair in a way you don't care for.
The reasons you may feel "down" after attending a meeting may be because you compared. Other reasons may be that you are in denial. Denial can be a wonderful coping mechanism and if you stick your head in the sand long enough, you never come to acceptance. To accept means that you start taking care of yourself in a general way by doing exercises, by swimming, by learning everything you can about Parkinson's, by consulting with movement disorder specialists, in other words, by taking charge of your life.
To live with Parkinson's means living your life in the best way possible. Tell your story, admit and go on with your life! In a support group you gain and give courage, strength and coping strategies from others. When is the best time to start attending a support group? The benefits are best gained early in the process. If you learn five years into the disorder that swimming is beneficial it may be physically more difficult to get started. Thus, as in most things in life, the early starter gains the most benefits.
The Parkinson Information and Referral Center maintains a list of support groups. In addition, if you would like to start a new group, the Center would be pleased to assist you in this process.