Living Well with Parkinsons Disease

Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at Copyright 2013-20 Sheryl Jedlinski

Support group success


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

10 comments on “Support group success

  1. 100wickedwords
    September 13, 2015

    Such a serendipitous circumstance–running into those women who wanted to make you their leader in the first place! Obviously, they know a creative cheerleader when they see one. Those women are lucky to have you leading the parade, but do make sure the required chocolate segment of your meeting isn’t skipped again…!

  2. Larry Williams
    September 13, 2015

    So happy you decided to give it a go….it will be good for you and lucky for them that you are part of ‘the gang’……tem

    • mydancingintherain
      September 13, 2015

      Thank you, but just getting started.

      • Claudia Kasper
        September 21, 2015

        Any room for 1 more ? I am interested in finding a support group in the southern suburbs of CHicago. I live in Mokena and the support groups for PD from Northwestern are too far for me to drive. I remember reading on your web site that you or Jean are from Orland Park. I’ll gladly bring chocolate ! 🙂

  3. Nancy
    September 13, 2015

    May I join you next time? I live in the area.

  4. Marianne Trombley
    September 13, 2015

    How did this woman happen to met you at the gym? Sounds wonderful how would you find people to join?

  5. sherryl klingelhofer
    September 13, 2015

    yay! such GREAT news—congratulations on a job well done!

  6. Kathy Lopez
    September 14, 2015

    Having a tie to someone with the future looking much like yours gives us the strength to carry on. I met up with five “shakers” when enrolling in a Pilates class. We joined a tai chi class as well. We compare notes on our conditions as we’re not all at the same stage and the few who “been there, done that” give valuable insight. We have involved our spouses with a social gathering occasionally.
    Thank you for your sharing your life experiences as a PD pal. I look forward to your contributions

  7. Mary L. Hoffmeister
    September 22, 2015

    Lucky ones to have you! Mary Lou

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This entry was posted on September 13, 2015 by in Advocacy, Coping Strategies, Family Life, Friends, Support Groups.

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