I think this week has already changed my life.
Wow. What a great event and what a roller coaster week. And to think I'm only half way through the conference.
So much to talk about, but I'll focus on three themes.
The bad
Day 1 was an emotional experience and a mixture of disappointment and inspiration.
Firstly there's the shock of seeing many people in the advanced stages of Parkinson's, especially a lot of Japanese (given they don't have to travel as far). Wheelchairs. Walking sticks. People wandering around like zombies. Severe dyskinesia (people writhing constantly like flags in the wind with a storm brewing). Cripples everywhere. The realisation that this could be my future.
Then there were some terrible presentations. I attended some sessions on patient advocacy. I won't bore you with the details, but some of the presenters were awful, the sessions tedious and rambling and self-promotional (presenters droning on about their credentials which turned out not to be good indicators of their abilities). I'm being pretty harsh of course, given that many of these people have Parkinson's, but then again I did pay a chunky fee to attend the event. And of course, there are the idiots in the audience that rather than asking questions in the Q&A, like to give a monologue about how great they are. As I've said before, Parkinson's doesn't discriminate.
The good
But then day 1 concluded with an opening ceremony that was truly inspirational.
As well as some great music and dance performances by Parkies, various awards and some fantastic videos, there were two very memorable speeches.
There was Lyndsey Isaacs, widow of late Tom Isaacs who was something of a legend in the PD community due to his relentless drive to find a cure, via his charity, The Cure Parkinson's Trust. Her tribute to his character of positivity and good humour was very moving.
The second speech that resonated with me was a woman who is a tetraplegic due to a horrific road accident when she was in her early twenties. She went on to have two children and lead a full, adventurous life. When diagnosed with Parkinson's she had the same matter-of-fact attitude. "Write a list of things you can still do rather than the things you can't do. And get on with them." Enough said.
The future
I had an ulterior motive coming to Kyoto - to figure out what I do next in life.
I do a job that I enjoy, but it's hard to put in the hours and the travel, and I long for early retirement. And, if I'm honest, it's of limited social value.
So my focus is on getting to retirement as quickly as possible, hopefully in the next two or three years. But what do next? My brain still seems to work (I went to a session on cognitive issues in Parkinson's and, fortunately, appear to be at low risk of developing dementia). And I should have a good number of "active" years still to come.
I don't really see myself as a Parkinson's advocate. There are others much better than me at PR. But I do have thirty of so years of technology, data science and management experience and I'd like to put this to better use. So I got talking to a number of people about how I can contribute.
At the end of day 2, I had a good conversation with the professor leading the Cambridge University neurodegeneration research group. And he led me to The Cure Parkinson's Trust. I met a number of people from the charity and talked to several of them about the possibilities and practicalities of using technology to further the identification of candidate treatments. They seemed excited about having a potential volunteer on their staff who brings specialist machine learning and analytics knowledge.
I won't commit just yet, but I'm pretty sure this is my future: working part-time for a charity, not fundraising or raising awareness, but contributing in a small way to the science behind finding a cure.
This morning, at the start of day 3, I awoke at 6am to a beautiful day. From Kyoto central station, I headed on the local train packed with children on their way to school, and got off two stops later at Inari, a small town next to the enigmatic fox spirit shrine complex.
I'm not a spiritual person, but nevertheless found myself making a donation and a prayer at a small, tranquil shrine dappled with early morning sunlight streaming through the surrounding bamboo forest.
I prayed that we may all keep striving for a cure to help me, the thousand or so other kindred spirits with me at the conference, and the ten million people with Parkinson's around the world who don't have the privilege of being in Kyoto this week.
