Global Bonds and Personal Growth: Reflections on the World Parkinson Congress 2023

by Tim Hague Sr.

Panelists on Activism and Advocacy at WPC2023 in Barcelona, Left to Right, Maria de Leon, Sharon Krischer “Twitchy Woman”, Larry Gifford, Tim Hague Sr., Omotola Thomas, Fulvio Capitanio, Sara Riggare — not shown Richelle Flannigan .

My first World Parkinson Congress was back in 2013 square on the heels of the momentous event of my year; my and my son’s win of The Amazing Race Canada. I tell you this to help you understand why I remember almost nothing of that congress except the people. You see my head was already in a completely overwhelmed state and the congress was a dizzying, bombardment of information and all things Parkinson’s from around the globe. I knew nothing of this event before attending. All I really knew when I arrived was that I would be speaking on the main stage for five minutes to some three thousand folks with connections to PD.

Third from left is Eli Pollard, Executive Director of World Parkinson Congress

That event and those five minutes changed my life.

My doctor and his team were there which totally surprised me as I had no idea why they would all be at the same conference as patients. Eli Pollard (of course!) left a lasting impression as this super woman who managed to put on a massive event like this nigh on single hand idly. Now, after four such events I remain mesmerized by her super human talents! There was Bob Kuhn, fellow PWP and of Parky the raccoon fame, who shared the stage with me that year. There was Jillian Carson physiotherapist, advocate and founder of the Parkinson Wellness Project out in Victoria, British Columbia, Canada. And so many more that could and should be remembered if time and space allowed.

My point here is that it’s always about the people. This congress it was about the friends, yes friends, from all over the globe whom I do believe I could drop in for a beer or a coffee should I have the good fortune to be in their country. Countries like India, Uganda, United Kingdom, France, across the USA, Canada, Norway, Germany, Nigeria, New Zealand, Australia, Ireland, Spain, South Africa, Scotland, Japan and, well, I think you get the picture. These many and varied people have inspired me, humbled me and provided the context forme to see and better understand this disease. Ultimately, they help me live better for having known them and a bit of their journey with PD.

There’s a little pizza commercial that says what makes their particular pizza so special is that it’s “all about the sauce”. In this case “it’s all about the people” it’s the incredible people I’ve met over these past twelve years that will keep me coming back again and again for as long as I am able. If we missed each other in Barcelona let’s make sure we do that coffee in, well, wherever next time is! I’ll look forward to hearing where the next congress will be and to seeing you there.

Live Your Best!

Tim

More Than Support: A Sibling's Transformation at the #WPC2023

Dave and Rob Warner in Barcelona

My name is Dave Warner, I don’t have Parkinson’s disease.  I accompanied my brother Rob, to Barcelona, who has Early-Onset Parkinson’s Disease.  I was there for three reasons.  First, to provide assistance to my brother, if he needed it – he didn’t need it much at all. Second, to learn what I can about the research, treatments, and care strategies that appear to be helpful.  Lastly, I just love spending time with my brother.  We have been close all our lives and I always love being with him.  

I was so impressed with the strength of character, humor and genuine kindness of the many people I met there.  I was pleasantly surprised with the level of candor I observed.  There seems to be a general open agreement that having Parkinson’s just plain sucks!   But with that, I observed a general determined optimism to live life as best as possible anyway.  There is little, if any, desire to receive pity; but there is a growing sense of urgency, bordering on impatience, to meaningfully address this disease on the national and world level.

I appreciated the urgency that I sensed among the researchers and physicians regarding efforts to address causes, improve treatments, and find cures.  I was also concerned when I see the community appear to latch on to singular answers.   It is important that we not let our hunger for a solution eliminate our responsibility to rigorously assess alternate paths of progress.  

My favorite speaker was Connie Phinney.  Her raw honesty about the challenges of caregiving (and strategies to address them) touched my heart;  and clarified for me how I can help my brother and sister-in-law.  

Most importantly, to me, and I don’t know exactly why or how, the overall experience changed me personally.  It made me more informed, with a desire to be more engaged.  I cried at the conclusion of the closing ceremonies.  Attending WPC2023 was not just something I did to support my brother.  The experience blessed me personally far more than I expected or even hoped.  

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