As a second generation Parky (diagnosed in 2013) and active in the PD community, I am involved in advocacy, education, and research. Before I could begin talking to legislators, writing about Parkinson’s, or submitting to needles, scans and tissue biopsies, I needed to become educated. I did this by attending conferences and events from MJFox, Davis Phinney, Northwest Parkinson’s Foundation, and what is now the Parkinson’s Foundation. These were highly informative and often inspirational. I met my movement disorder specialist at a HOPE conference in Spokane, Washington!

At some point, I heard about WPC--the World Parkinson Congress. A multi-day, multi-audience, multi-track, multi-purpose gathering, it sounded like a worthwhile investment in time and money. Best of all, the next WPC was to be held in 2019 in Portland, Oregon—less than a day’s drive from home and where our kids and grandkids live. What’s not to like?

I was (as we said in the ‘60’s) blown away. The diversity. The numbers. The intensity. The knowledge. The science. The excitement.  Since then, I describe the World Parkinson Congress as all things Parkinson’s. I was hooked. I learned and experienced more in four days than I had in the previous four years. I began to think of WPC as a gathering of the World Parkinson Community. It is like a giant family reunion. Whether we have PD, are a care partner, clinician, researcher, therapist, sponsor, or presenter, we’re all related through our Parkinson’s.

Then I found out WPC 2019 would be in Kyoto, Japan. I had lived in Japan when I was five years old and wanted to re-connect with part of my childhood while having another profound and meaningful event at WPC.  Each person has their own distinctive experience at a WPC. There are so many possible combinations of presentations, activities, and happenings that no two people experience the WPC in the same way. It parallels our experience as people with Parkinson’s--each of us with our own unique combination of symptoms, age at onset, rate of progression, and circumstances of our diagnosis.

Each koi pond unique
Water ripples mirror life
Sometimes turbulent 

In Kyoto, I read haiku, drummed, ate raw fish, visited palaces and temples, met new friends, sat through incredible talks and on and on and on. Only afterwards did I realize many of the choices I made involved three of my favorite letters in the alphabet—Q, O, and L; QoL; Quebec Oscar Lima—all shorthand for Quality of Life. Exercising to maintain movement and slow the progression of PD. Learning (or at least trying) new skills and activities. Learning more about self-care to lead a more enriched and active life. Maintaining and improving my relationships. Finding new ways to help others. Creating opportunities and being more open to possibilities. Those are some of my reasons to focus on quality of life.

Imagine my delight when I was asked to be a moderator for a session of the WPC Virtual Congress scheduled for May 2021. Care to guess what topic? How about “Living Well with Parkinson’s.” I think the universe is trying to tell me something.

On May 19, listen to three inspiring messages from Geoff Constable, Sara Riggare and Soania Mathur with a follow-up Q&A session on May 20.

A.C. Woolnough is Chair of the WPC 2022 Parkinson Ambassadors and was also an Ambassador for the 5th World Parkinson Congress. Before his involvement with the WPC, he was Vice-Chair of the People with Parkinson's Advisory Committee at Parkinson’s Foundation where he also trained to be a Parkinson's Advocate in Research (PAIR). He writes a monthly column for an Idaho magazine, The Reader and also he has written a book, On Fire-Reflections on a journey through life with Parkinson’s Disease.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®