The Grit in the Pearl
My parents brought me up from an early age to understand the importance of introductions. As my mother repeatedly told me "you never get a second chance to make a first impression, Jonathan".
She may be gone but that message has never left me. So, with your indulgence, let me introduce myself and tell you a little of what we hope to do in this column.
Me first! I am something of a chimaera. I am a neuropharmacologist by training and, for more than a decade, headed a neuroscience research lab looking at dopamine function in the basal ganglia in relation to Parkinson's. Funnily enough, I obtained my doctorate at the London Hospital Medical College, the same medical school where James Parkinson himself trained around two centuries earlier. Then, in 2006, in one of those coincidences in life that one can do without, I was diagnosed with Parkinson's myself at 49. I remember my wife saying that acquiring Parkinson's was taking my training too far. I was inclined to agree with her.
But strangely enough, inheriting this dual viewpoint (albeit not very willingly) has given me a rare perspective on the condition. As a research scientist, I knew the key features of Parkinson's – tremors, rigidity, slow movements, all that stuff. It was there in the textbooks. Had been for hundreds of years. But that's the point – as a scientist, I knew what Parkinson's looked like. But, as a patient, I knew what it felt like – pain, constipation, depression, impulsivity, cognitive struggles and so forth. All the non-motor symptoms that doctors describe but that patients experience. Not everybody has such a holistic perspective on Parkinson's. I just got lucky I guess.
But in some ways, my personal perspective is mirrored in that of the World Parkinson Congress (WPC) itself. From its very earliest days, the WPC has fostered just such a broad viewpoint, emphasising the equal validity of patient experience alongside academic learning. And you can't overestimate the importance of this.
Groups of neurologists, talking among themselves, will discuss diagnoses. Scientists will describe mechanisms. Patients will speak of the unseen symptoms of Parkinson's. Each group speaks to their own echo chamber.
But progress isn't confined to siloes. Progress occurs at the interface of technologies and understandings. It is the product of intellectual friction – where different philosophies rub against each other. After all, it takes that little bit of grit in the mantle of the oyster shell to produce a pearl. Think of progress as all about pearls.
You have to create the right conditions to grow the pearls of progress. You need to put together different groups with different viewpoints. You have to create conditions fertile for progress. WPC, from an early stage, was predicated on just this concept – that providing a forum for the whole Parkinson's community was essential to future progress. Meetings of clinicians, scientists or patients alone are the sound of one hand clapping.
WPC meetings are all about pearls. The program of each WPC meeting is carefully assembled with exactly that view in mind – to create conditions ripe for progress. And this is in ways both seen and unseen. It is cultivated in the conference's plenaries, workshops, roundtables and symposia. Each is programmed to create that little bit of friction. Not in a bad way, you understand – I don't think we've ever had fights – but in a way that has people thinking "I wonder if…". And these thoughts are not even confined to the formal sessions. How many brilliant ideas came out of conversations in the queue for coffee? Or a shared table at lunch? How many people found future collaborators in an overheard remark at the drinks stand? You'd be surprised.
International collaborations between neurologists and patients, spanning several continents have emerged from chance meetings at WPC. In fact, in many ways, this is what WPC is all about – fostering those interactions, providing the circumstances for collaborations. Having every different part of the Parkinson's community together in one place makes this possible. The value of the meeting extends beyond the three days of the meeting itself. Sure, those are the starting points. But often these are the grit in what are to become some wonderful pearls!
I have attended all but the first WPC in Washington in 2006. I was there in Glasgow in 2010, watching the pipers open the Congress after Bryn Williams's memorable call to arms. Three years later, I heard Bob Kuhn and Tim Hague share the love with delegates in Montréal. 2016 saw us convene again in the relaxed vibe of Portland before venturing east to Kyoto this year. From tentative beginnings, WPC is now firmly established in the calendar. It is no longer an interesting experiment in juxtaposing patients and physician-scientists. It’s a tried and trusted formula. WPC meetings are the real deal. I was honoured to be one of the inaugural WPC ambassadors.
And it's time to tell those stories – those casual coffee cup conversations, those patient powered projects and felicitous friendships. It's time to show how the importance of the WPC extends way beyond the meetings themselves. So, each month, starting in October, we will let you know how WPC has been instrumental in projects and collaborations, in essence the grit in the pearl.
If you have examples of collaboration born, of inspiration garnered over a coffee, or of opportunities emerging from a WPC meeting, we'd love to hear from you. Please email at firstname.lastname@example.org with the details of your story.