The Joy Of Starting A Support Group

Support groups are just a place for people to commiserate and belly ache, or at least that was what I thought they were.  I had attended a group for a year or so, but inconsistently,  for that very reason. I was finding that meeting with the group was having the opposite effect of what I had hoped to achieve. My intention for going to these groups was to learn, to be inspired, and to come away with a better strategy of how I might live my life with Parkinson’s Disease. Rarely, did I get that satisfaction. I don’t blame the leader or the group, the meeting just wasn’t ran that way and the patients in the group weren’t in a place for my type of meeting.

Some support groups are instant successes and others may take delicate pruning. The support group is an ever evolving entity as it rotates new as well as older members. I have seen Parkinson’s  Disease support group members range from the ages of 25 to 75 years of age.  A support group binds everyone in that meeting for  one unified purpose that transcends all cultural or social labels. Rich or poor, famous or not, each of us is there to learn, share, educate, laugh, strategize, congregate, and gain a new perspective.

My vision for a support group came from what I selfishly needed. I wanted to develop a safe and welcoming environment where the group felt comfortable to be at ease enough for 2 hours to be themselves. I saw this support group as an opportunity to develop true meaningful dialogue between patients and even carepartners.  I take great joy and no credit for the amazing transitions that I continuously see in members. Once quiet members who kept to themselves or who had little or nothing to say, now take the initiative to embrace new members in need and are always willing to add thoughtful and meaningful commentary. Watching the group grow and take shape has been a labor of love.

I must admit, I think the group is 8 years old but it could be slightly older. On the evening of our inaugural  meeting, my wife, Angela, and I had no idea how many people to expect. It was a cold damp March night and I was sure no one would come. Much to my amazement, one couple showed up and I am so proud to say that they are our dearest of friends and remain in our support group after all this time.

About Karl Robb

Karl Robb has had Parkinson’s disease (PD) for over twenty-five years. Karl believes he has had PD since he was seventeen years old and was diagnosed at the age of twenty-three. Now fifty, he is a Parkinson advocate, entrepreneur, inventor, writer, blogger, photographer, Reiki Master, and speaker on PD issues. Karl is the author of the book, A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease. He has been chosen as a blogger partner for the 4th World Parkinson Congress being held this September in Portland, Oregon. He has a bachelor’s degree in English from the University of North Carolina at Chapel Hill. His writing has been featured in The New York Post and he has appeared on BBC radio, the CBS Saturday Evening News, Japanese television, as well as several local Washington, D.C., television stations. Karl is a former board member and a Virginia assistant state director of the Parkinson’s Action Network and a board member of the Parkinson Voice Project. You may reach Karl via email at asoftvoice@gmail.com, visit his blog at www.asoftvoice.com, on Facebook, or contact him via Twitter @asoftvoicepd.

Posted on March 30, 2011, in Education & Support, Health, Parkinson's Disease, Philosophy, support groups, Uncategorized and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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