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…
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.
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.
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.
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.
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…
Were you to plot on a map the countries of origin of all WPC attendees, speakers’ countries, WPC board of directors countries, or perhaps sites of previous and future WPC events, would you be likely to observe some consistent tendencies?
Approximately 15% of the world is highly represented at the WPC while 85% of the world is marginally represented at most. And you call out the scientific community, rightfully so, for living in a bubble…
It’s interesting that the patient community almost without without dissent desires a more troubled image of living with Parkinson’s. Never mind the explosive growth of treatments in the last decade or so – well, for some of us anyway. Adequately treated PD and untreated or under-treated PD are really like two entirely different diseases.
Imagine the image the latter group would find to be representative of their disease! Imagine how quickly this group would trade diseases with those of us in the so-called 15% group. We wouldn’t have to imagine if we were to give them a voice.
Before I crawl back in my cave, I must close with, Gooooo Raptors!
Indeed, only a fraction of the world is represented, there is much that needs to be done to bridge those gaps, alas time and resources are limited.
…One more win
Welcome to the Matrix, Ben! 🙂
Not that I’ve been to a single WPC…I’m far too jaded, as you know. But the sheer super-human, brutal effort of so very many PwPs attending these conferences always seems to me to be wholly unrealized by those very speakers (the scientists, R&D ones) invited by the WPC. Which means…who benefits? How do the WPC pick their speakers? They naturally have to fund this – outside of their ‘shakers’ – so one has to ask; who works for whom? I know Medtronic (a huge contributor in the past) threatened to pull their funding at the Oregon WPC. I even approached BSC about it. My point being this:
What is the purpose of the WPC – their mission statement, their onus.
Ultimately IMHO, I think their heart is in the right place, but inevitably it means getting into bed with some seriously un-afflicted business and the almighty lobbyists. If the WPC does anything, it raises some awareness about Parkinson’s. But is that it?
Line of the year: ‘Refreshingly, death was confronted early and often.’
Well said, to all you’ve covered!
Thanks Lisa. I should say that a lot of good happens at these events, much of which happens in the hallways and meeting areas where information flows from person to person, many come away with more informed perspectives. A lot happens when so many are simply brought under the same roof, connections and networks are formed or strengthened, I think almost everyone left at least a little more empowered than when they entered.
And while we are right to be cynical at times, there are many allies in the research community, and even in industry, that can be relied on to do good, just a matter of finding the right ones.
Yup, right as always Ben and I’m happy to hear that those PwP who come away better informed are really the point of these WPC congress: brownie point for that!
If anyone could make it happen (you know I’m thinking YOU) it would be great to have a conference of Parkinson’s peeps – lots of hallways! 🙂
Thank you for this clear-eyed assessment and your emotional honesty. I chickened out of attending, having anxiously anticipated most of what you describe. I’m looking forward to watching the WPC presentations on YouTube (while eating with a fork).
Hi Ben I am sorry we didn’t get to speak longer and that I didn’t make the Advocacy session. I thought your comments about the WPC were spot on. I was surprised however, about your statement that there had been consensus that we should not be depicting PwP as being “content faces” of people coping well but rather images of people doing poorly. My concern is the stigma and stereotyping; that PD is just an old person’s disease that is already far advanced and that there is nothing you can do. I moved from Toronto to the Perth area (an area I know you are familiar with) where the prevalence of PD should be should be one of the highest with the greatest percentage of seniors in rural (farming) communities and where men are the hunters and fishers, blue collar “don’t talk to their doctor” type people who don’t get diagnosed until they are elderly. I think that the Parkinson’s Changes Everything slogan scares them and that the Where There is Help There is Hope is the message we should be conveying.
Would like to understand the other point of view.
Pat Evans 613 2723383 PS If you’re in the area on Saturday, September 7th (SuperWalk day), you’re welcome to come and stay with us on the Big Rideau Lake and join our walk in Perth!