We were somewhere on the edge of the Karasuma subway line when the agonists started to take hold…

It has been three days since the 5th World Parkinson’s Congress in Kyoto wrapped, what is left is a whirlwind of memories that are impossible to put in coherent order. So, I’ve decided against any attempt at a narrative, instead here are the scattered thoughts that stick out most…

Comic-Con

There is something almost comically morose about getting nearly a thousand individuals with varying levels of disability to bear the strain of travel to the other side of the world to endure nearly a week of rigorous scheduling while sleep deprived and thrown off their medication, diet and exercise routines. It guaranteed that almost all would be at their worst. This was mostly unavoidable, but there did seem to be a subtle turning of the comedic dial when a thousand people who have trouble with dexterity were given nothing but chopstick to eat lunch with for the week.

Be Still

Japanese culture made it the ideal host for the organizations entry into Asia. Overly polite mannerisms and stolid demeanor are what you want when facing a population of writhing, shaky, slow moving individuals. In some parts of the world this event would surely have been much more of a spectacle for the locals.

Beauty and the Beast

Not having adjusted to the new time zone, 4am wake ups were the norm, but were put to good use as the grounds of the center were perfect for early morning runs. Pristine ponds and manicured gardens, everything you’d picture Japan to be. The conference center on the other hand was a layered grey concrete maze of sharp lines that looked more like the headquarters of a Bond villain.

Death

Refreshingly, death was confronted early and often. The patient community seems to have long been a scattered collection of voices pushing in a thousand different directions. But on the first day of the conference a four hour session on advocacy was held during which some semblance of consensus from the patients gathered emerged – the narrative we portray of this disease needs to change from content faces of those coping well to cigarette warning-like depictions of the long slow painful death that is the lasting hallmark of this disease for so many.

No China?

Disappointed in the lack of Chinese presence. Missed opportunity to bridge gaps with the largest population of people with PD in the world. But, knowing a thing or two about China and the Chinese, that overture would not have been easy to make and their presence in large numbers may have thrown a giant panda-sized monkey wrench into what was already a very difficult feat to pull off.

The Lost Art of the Talk

At my first WPC nearly three years ago I was a fly on the wall, I did not know anybody or anything, it was all new to me. I left enthralled and captivated by the science, it all seemed so mysterious and important. Now, after three years spent immersing myself in this world, I often question who science is there to serve.

Another gripe I have is the robotic, cookie-cutter approach that many researchers rely on to deliver their talks. While there are some willing to be provocative or try something new, too many spend their entire presentation reading almost verbatim what is written on their slides or just retelling what they have been doing for the last decade, as if we came to listen to their CV.

I also find it a little strange that scientists are asked to give talks on subjects they spend their whole careers on – geneticists talk about genetics, stem cell experts talk about stem cells, etc – while patient speakers are assigned a hodgepodge of topics to discuss. I for one would like to see researchers also given something a little outside of their comfort zones to talk about.

In general I think this conference would benefit from more time devoted to discussions between panelists on systemic issues and how anything that does get presented fits into the larger picture.

Death again

I wonder how many in attendance will be well enough to make it to the next WPC in Barcelona in 2022. I think of the generations of people with PD that this conference has seen, very few seem to make it to more than three, and the in memoriam video gets longer with each iteration. It was all a welcome reminder, I often forget what is at stake in what we do.

As for how to cope, one slide in particular that I used seemed to resonate well with people, fitting words to end with from one of the giants of modern philosophy…

(For those wondering what’s next, consider coming to Grand Challenges in Grand Rapids, Michigan August 21-22. Run by the Cure Parkinson’s Trust and the Van Andel Institute, it’s like a smaller but more focused version of the WPC and it is paired with the patient lead Rallying to the challenge program plus it’s a great opportunity to meet up again. This year’s topic is genetics…

https://grandchallengesinpd.org/

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