Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at www.PDPlan4Life.com) Copyright 2013-16 Sheryl Jedlinski
By Sheryl Jedlinski
One day, out of the blue, a stranger came up to me at the gym and asked if I would be interested in starting a support group for women with Parkinson’s disease. She had three other women besides herself interested in joining.
You must have me confused with someone else, I told her, as I had never even attended a support group meeting, let alone led one. Like many of us, I allowed my fear of encountering people in the later stages of Parkinson’s to keep me from joining a support group. Perhaps if I had known what I was giving up — a sense of community and camaraderie that comes from being with others facing the same challenges — I would have made a different decision. The wealth of experience and knowledge ‘old timers’ bring to the mix trumps any premature concerns they may trigger about serious disabilities we may face down the road.
I took a few days to consider the support group position offered me and decided to try it, with the caveat that it be a monthly lunch group rather than a traditional support group. Our inaugural meeting went almost two hours, with barely a pause in the conversation and no time for dessert. Surely, the latter has to change. I am okay with no pay, but not when paired with no chocolate. The four of us moved easily from topic to topic, sharing the personal experiences we’ve had with doctors and treatments; and offering mutual support and encouragement. My comfort level was so high that it felt more like a reunion than a “first date.” This explains my ordering something I wanted to eat, rather than something I would not be wearing at the end of the meal.
Our meeting was a success by any measure. First and foremost, we empowered one woman to follow her instincts and change her doctor for another within the same practice. Studies show that the better the doctor/patient relationship, the more likely the patient is to achieve better health outcomes. A few days after our meeting, the woman emailed each of us a thank you note, saying she already had an appointment scheduled with her new doctor. Another woman shared news of a device that makes it much easier to get in and out of cars. She took us to her car in the restaurant parking lot so we could try it out. I immediately went home and ordered one for each car. In the end, the bottom line says it all. Five more women, invited by our fist group of members will join us for lunch next month.
“We all have the ability to make a difference in this world and to impact change. If we each make a significant mark, what an overall profound impact we can collectively have.” Steve Jobs, late visionary Apple CEO