Living Well with Parkinsons Disease

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

Raising awareness means telling our stories

lectureI recently noticed that Holocaust Remembrance Day typically falls during Parkinson’s Awareness Month. How is it that one of the most heinous crimes against humanity came to be memorialized against the backdrop of a progressive, incurable disease? Remembrance, like awareness events, challenge us to share the lessons we have learned over time, to ensure that future generations will not repeat the mistakes of the past, and will be spared the horrors these mistakes bring about.

Sharing our personal stories about the Holocaust and/or Parkinson’s puts a face on these issues that is difficult to forget. I experienced this firsthand while listening to my friend, Margot, tell her story of survival to 200 students in grades 4 – 12. They sat in rapt silence for 30 minutes as she described how she and her sister were taken from their parents when she was only nine, hid in spaces smaller than Ann Frank did, survived the horrors of multiple children’s camps in France, and eventually made it to the United States where she married, raised two children, and now has six grandchildren.

We must not allow our efforts to end with Parkinson’s Awareness Month or Holocaust Remembrance Days. This is a marathon, not a sprint, and we are in it for the long haul.

I recently had the honor of sharing my challenges with and triumphs over Parkinson’s disease with a great audience in New Orleans. Click here to listen to my story.


7 comments on “Raising awareness means telling our stories

  1. Michelle David Lane
    April 28, 2014

    Sheryl, we can not begin to thank you for being the keynote speaker at our annual symposium. What a pleasure it was for you to share your challenges and triumphs with our PD community. You received rave reviews ! Thank you for being an inspiration to so many. A big thank you for such a wonderful website and virtual calendar which was so very much needed……Michelle Lane

    • mydancingintherain
      April 28, 2014

      Thank you for having me, Michelle, and for giving me my first chance at being the keynote speaker. I am thrilled that the audience rated me so highly… their enthusiasm made my part better. Thank you, too, for the southern hospitality. It was great meeting everyone and I hope our paths cross again soon.

  2. Jenny Beutin
    April 28, 2014

    Here here!

    • Jenny Beutin
      April 28, 2014

      Here here!

  3. Tem and Larry Williams
    April 28, 2014

    Love the analogy!!! Perfect! and so true! tem

  4. Claudia Revilla
    April 29, 2014

    It is so true!! Storytelling is a way to communicate and connect effectively and to engage people in any subject or issue in life. With Parkinson’s Disease every story counts because it is a boutique disease, and when we see other people going through our same situations a chain reaction begins: awareness and action take place, just what we need to get to the cure. Love this article and the analogy, as always, Thanks Sheryl!!

  5. 100wickedwords
    April 30, 2014

    Now I’m doubly sorry I couldn’t attend Margo’s presentation!

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This entry was posted on April 28, 2014 by in Advocacy, Back to Normal, Politics of PD.

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