It’s Saturday morning. Early Saturday morning and we are heading to Osaka on a small bus. WPC 2019 is over. The exhibition hall which, only yesterday, was a hubbub of noise and Japanese drummers, is silent and dark.  The exhibition stands have been torn down, the company reps, cellphones buzzing, are heading to the next conference. The monsoon season has begun and the raindrops fall heavily on the azaleas.

The mood on the bus is reflective. This conference has taken its toll in so many ways. The team is returning  bloodied but unbowed.   Battle-weary but battle-hardened. Overtired, overemotional, overdrawn. There has been no shouting or hissy fits. No tantrums, no divas. We’re not like that. No, this is just the raw emotion of people who grasp only too clearly the enormity of the task ahead of them and the part they have chosen, or that has been chosen for them, in what we have to do.

It is a noble, even heroic, endeavour – to cure the world of a disease, to wipe it off the planet, to erase its existence.  To change the world in such a way that nobody will ever have to suffer from this disease again.

As the bus rattles on to Osaka airport through the morning mist, conversation is sporadic. Most are caught up in their own thoughts. Maybe dreaming of home. It’s too early to say where Kyoto fits alongside Washington, Glasgow, Montréal, and Portland. Too early for that kind of perspective. There is plenty of time for that. Certainly we have learnt new things

What was the worst thing about Kyoto 2019? Trolls. Voices of whingeing negativity. We don’t have a cure but we are trying. God we’re trying. You would think that would be enough. But not for the trolls. They too are trying. Very trying. 

Every bold advance brings them out – ugly nihilistic trolls scuttling among the rocks, peddling petulance and pedantry. Left unopposed, they sap the spirit, wither the will.  These are the kind of people who would complain about the cooking at the Last Supper.  And you know the most amazing thing? Sometimes they are not even people with Parkinson’s. 

And the best things about Kyoto 2019? The dogged persistence of the battle.  We were never part of the It-will-be-over-by-Christmas brigade. We always knew it would be l onger. Gone are the glory boys, the headline seekers. Gone are the show ponies. What’s left are the fighters. Those who are in it for the cure not for the headlines. These are the real soldiers. These are the men and women I want to stand beside. These are the troops who will fight to the end.

We need to remember that progress is incremental not explosive. The treatments we have today are better than five years ago. And those then better than ten years back. While we lick our wounds, the bus rattles on. 

As the rain falls in Kyoto we remind ourselves that, although the job is unfinished, there has never been a better time to have Parkinson’s. And it’s going to get better.

  • Dedicated to the memory of Ryan Tripp, a true soldier.
Kyoto diary 8. Coda