Went to my support group meeting last weekend, and I felt again like a swimmer in trouble finally getting her head above water to catch a gasp of air. Now I can keep swimming for a while.
I know that a lot of patients are nervous about support groups; the idea of seeing people in later stages of the disease is scary. I had misgivings too, but from the first moment we walked into the room, I was relieved to discover that meeting and talking with other patients is inspirational, not frightening or depressing. I was a bit taken aback by the average age of the group, which was listed as a "Young Parkinson's" group; a lot of these folks were over 80, most were over 60, and I think that at 47, I was the youngest in the room. One lady laughed seeing my expression and explained, with a twinkle in her eye, that they were all young when the group was formed! The leader of the group is younger, and since then, more younger people have joined, but I have found that age doesn't really matter. We're all in the same boat.
My husband and I both look forward to the meetings. Not only are we very fond of all the people there, but it's also the only time we can share our experiences and feelings with people who know exactly what we're talking about. I work very hard to not burden others with my fears, tears anger and frustration. It's such a relief to be with people who understand these things and are not distressed by them and don't judge me by them. It's also very therapeutic to provide some help and hopefully inspiration to others.
I find the people in my group so inspirational. I can't name names, but they know who they are. They (patients and care givers alike) are all struggling with this disease, and they all show incredible resilience and grace under fire. Some of them have trouble walking, talking, or doing everyday activities, but they still laugh and tell stories and sing, travel and even dance in some cases. They listen, they share, they help and most of all, they care.
I know support groups are not for everyone, but I would certainly advise every patient to try it, and their care givers as well. It might surprise you, as it did me.
