It’s been almost exactly three years now since I left China to try to make sense of Parkinson’s. At first I didn’t know where to turn, until I went to the World Parkinson’s Congress in Portland, Oregon in September of 2016. That conference ignited my interest in the science of this disease and the field that surrounds it. Now, nearly 2 years and 9 months later, I’m getting ready for the next WPC in Kyoto, Japan next week.
Portland was an overwhelming experience, a swarm of people that seemed to be constantly moving in all directions, and more information to take in than I could possibly process. I knew next to nothing and almost no one at the time. Oh how things have changed.
In just the last year I have been invited to speak at 8 international conferences, 10 academic centers and 13 biotechnology companies. I have been an author on 4 papers published in major medical journals and have now interviewed 80 world experts for this site.
In those 3 years I have managed to turn this diagnosis into a new career of sorts. The Japanese have a saying for such things…
起死回生
“Wake from death and return to life.”
Meaning to turn a bad or desperate situation into a success
However, a week ago I got a harsh reminder of the reality I face, of what really is at stake here, and of how relatively little progress we have made.
The picture above was taken at the Davis Phinney Victory Summit held in Toronto in October 2017. I manned the booth above on behalf of the WPC with Ryan Tripp. I had met Ryan earlier that year, seemingly everywhere he went he carried with him a big heart and a joy for life.
Then last week, as I was preparing for another talk, I got the news that he had passed away. It is gut-wrenching to think that at each WPC there will be more and more people I have come to know unable to make the next one. Ryan will be sorely missed, his death reminded me of just how much still needs to be done. Though we have very few successes we can point to from the last three years, we will continue to do as Ryan had done and fight until the day we no longer need the WPC.
石の上にも三年
“[to stay] three years on a rock”
Meaning to persevere to see something through to its conclusion.
Beni, this one is a hard one to read, but I’d be amiss if I didn’t tell you how proud we are to be you parents. Not only because of how you are facing and fighting this awful disease, but mostly how compassionate and caring you have become (you and we know that humble you ain’t – and most likely never will be).
Love ❤️ you with all our might (Buzka)
Mom and Dad
Dear Ben’s parents, You raised a wonderful son, for sure! His inspiring work on behalf of the PD community and his friendship are much appreciated!