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Dare to Attend a Support Group

Monday August 01, 2016

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You are in the early stages of Parkinson’s disease. You cope well with symptoms, and when your trusty meds are well adjusted, so are you. Most people, in the course of casual contact, can’t even tell you are undergoing a slow motion brain injury. Why should you clutter your busy schedule with a support group meeting? Especially, let’s admit it, when then prospect of encountering patients deep in the grip of this affliction, those with prominent tremors, uncontrollable dyskinesia, drooling, hunched posture and blank expressions is what you foresee as a frightening glimpse of your future. Why expose yourself to this potentially demoralizing  experience?

I dreaded an encounter with “The Scary Old Guy With Parkinson’s Disease” when I first attended a local group meeting. And indeed, the only place to sit when I arrived was right next to a classic Scary Old Guy With PD. But there were others who were handling the disease with a fair bit of success, still working, still playing, and enjoying life. I expected to come away from the event frightened by the ghosts of Parkinson’s future. And I was, a little. But the main thing I came away from the meeting with was a sense of hope and inspiration from seeing people who were living well with PD and had been for a long time. If they could do it, maybe I could, too.

And The Scary Old Guy? He taught me a second important thing about support groups. He leaned over and said, in speech so damaged by PD I only understood after his words were translated by his wife, “Don’t wait to get speech therapy.” His desire to warn me of trouble ahead, his effort to communicate in spite of the risk of humiliation, and his advice about how to minimize similar damage are examples of support groups as compelling sources of information. The groups are made up of people whose combined experience with the disease adds up to decades of coping. Your doctor has lots of learning about this disorder, but the Support group members have wisdom: learning tempered in the forge of experience. And they are eager to share it with you.

Another benefit of support groups is the chance to observe how different individuals in the group deal differently with disease. This will give you the chance to observe the results that they get with the methods they use.  You can emulate the strategies of those that seem to be doing well and avoid the pitfalls those who seem to stumble in their course with the disease. 

Support groups also develop some expertise in the parts of the disease experience that fall outside the purview of your doctor. Problems that are PD-related,  but not strictly medical. Problems like those that arise in dealing with insurance hassles, disability, Medicare and related programs, working effectively with your doctor, care giving, end of life issues, and the list goes on.

Finally, don’t overlook the social benefit of going to a support group. We are social animals, and Parkinson’s Disease undermines our abilities to socialize in myriad ways. This leads to isolation, and that makes coping more difficult. Who better to spend your time with than someone who has a deep and sympathetic knowledge of what you are going through? Whom do you have to worry least about judging you for your tremor or other symptoms? And some of your fellow PWPS Are fascinating people that are plain good to know.

Parkinson’s Disease isn’t something you want to to face alone. The support group is there to see that you don’t. 

 

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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