WPC Roving Reporters: Day One Insights

Each day during our coverage of the 3rd World Parkinson Congress, we ask our WPC reporters, “What’s the most interesting thing you heard or saw today?” Here are a few answers from Wednesday, October 2, Day One.


Karen Smith

Karen Smith, PDF Research Advocate, Evansville, IN
Day One of the World Parkinson Congress was exhausting but exhilarating. I especially enjoyed speaking individually to experts in their fields. Dr. Okun, a renowned movement disorder specialist from University of Florida, signed his new book and spent several minutes talking with me about DBS surgery for my right side. I met two movement disorder fellows from Russia and learned a bit about how things are done in their country. I enjoyed talking with two medical science liaisons about shopping and also the PD drug they have coming down the pipeline! I could go on and on but suffice it to say that something about the Congress brings down barriers between members of the medical community and patients. At home I’m always a little reserved when talking to doctors but here it’s like you’re talking to a neighbor. Looking forward to days three and four!

creativity theatreRonnie Wanetick, PDF Research Advocate, Walnut Creek, CA
I visited the Creativity Theatre for a screening of some of the documentaries that had been submitted to the WPC video competition, but had not won. I had the advantage of hearing their originators explaining the behind-the-scenes emotions and actions that went into their creation. Many of the presenters talked about an enhanced creative force coming to the surface with their Parkinson’s. One presenter said his newly-found humility freed him to live more effectively. [Note from PDF: view Top 12 videos here.]

Jill McClure, Information Specialist, PDF, New York, NY
This afternoon, Janice Miyasaki, M.D., a clinician and care partner said “doctors need to help their patients live fully now!” I loved this quote, which was part the workshop entitled, “Quality of life and comfort in the late stages of Parkinson’s disease.”

One thought on “WPC Roving Reporters: Day One Insights

  1. Patricia Parkhill

    My experience with PD has been full of research facts on symptoms. No real stories of others painful journey to their diagnoses. I look back and realize it took almost ten years. My symptoms were never put together. The tremors , internal tremors, painful dystonia restless leg times 1,000. The burning pain in my upper back, my right arms inability to move, falling freezing in place feels like a painful locking( broke my foot in 6 places as a result) my change in voice facial expressions. At times thinking u lost it but knowing that is so far from the truth. My faith sustained me and still does til this day. I vow to never allow depression define my life. The disease may be here to stay but it can’t have another day of my happiness. Please share with me your journey to diagnoses


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