Living Well with Parkinsons Disease

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

Courage and team work help us conquer our fears

clasped hands

Courage took center stage at Chicago’s inaugural Partners in Parkinson’s (PiP) event, sponsored by the Michael J. Fox Foundation and Abbvie. Not the kind of courage that roars, but the quiet kind that helps us face our fears, and reinvent ourselves to live well with a progressive, incurable disease. Almost 1,000 people — many of who were newly diagnosed and/or attending their first PD event — turned out for the program.

Taking that first step into a support group meeting or an educational symposium is the most difficult for patients, requiring all the courage a newbie can muster up. Seeing people exhibiting the symptoms of advanced PD is enough to start newbies projecting what might be in store for them months or years down the road. For a long time, I believed I was the only person with Parkinson’s (PWP) who felt this way. I was ashamed of myself and hoped other PWP would not one day find me too scary to look at. These feelings are the white elephant in the room that no one acknowledges, though we all experience them.

The enemy within is the toughest opponent we face, constantly telling us we are powerless to improve our situation. In reality, this is not so. Former Surgeon General Everett Koop said, “Knowledge is the best prescription,” empowering patients to make educated decisions about their health and medical treatment.

Whether you were unable to attend PiP or are seeking follow-up information, go to to:

  • Access an online tool to find a Movement Disorders Specialist
  • Connect with an advocate by phone for one-on-on advice and support
  • Find an educational website featuring everything you ever wanted to know about PD

As a long time patient, I am grateful to the Michael J. Fox Foundation and its corporate sponsor, Abbvie, for recognizing and meeting this need in our community.

2 comments on “Courage and team work help us conquer our fears

  1. Tem and Larry Williams
    November 5, 2014

    If this was the biggest message taken from this symposium it could not have been better….am sure so many share this same emotional journey and perhaps, hopefully, the message and sharing will help each on their own level through the storm….tem

  2. 100wickedwords
    November 6, 2014

    Personally, I have always seen you as a powerful force for change and your courage–admitting being fearful and less-than-courageous–is one of the reasons I admire you so much. Rock on, Powerful Woman.

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This entry was posted on November 5, 2014 by in Advocacy, Drugs, Exercise, Family Life, Friends, Parkinson's symptoms, Partners in Parkinson's.

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