What would James Parkinson have made of it all?

Friday 7 June 2019

I am sitting on a bullet train speeding from Kyoto to Tokyo at 300 km/h, pondering all that I have learnt and experienced over the past 5 days (which incidentally, feel more like 5 weeks - see previous post here) at the World Parkinson Congress.

In April 1817, a progressive and talented, but nevertheless relatively unknown doctor from London's East End called James Parkinson published a study on a condition he called a "shaking palsy." In his essay he speculated about possible causes and treatments. I imagine he expected that a cure, or at least a way to stop it getting worse, would be found in his lifetime or not long after. The condition would, of course, later become known as Parkinson's Disease.

Wind the clock forward 200 years and, remarkably, there is still no clear understanding of what causes it, what different variations there are, how to cure it, or even how to slow its progression. The best that medical science can offer is drugs that give temporary relief of the symptoms and some evidence that exercise helps.

Many people complain that not enough funding goes into Parkinson's compared to say cancer or even Alzheimer's. It's true that scientific breakthroughs are frequently correlated with the level of investment and it's always desirable to spend more. And it's a shame that big pharmaceutical companies like Pfizer have recently pulled their funding.

Yet I am sure, had James Parkinson seen what I saw this week, he would have been truly astonished. Perhaps 1,500 medical professionals and researchers from every corner of the planet sharing information and ideas about neurogenetics, stem cell treatment, pharmacology, neuropathology, transcranial magnetic stimulation, microbiome studies, basal ganglia oscillations, proteinopathy, autophagy, and so the list goes on. Nearly all of these topics would have been unheard of in Parkinson's day.

There were a similar number of people with Parkinson's of all types and in all stages of progression: sharing advice, learning new therapies, making friends, coming to terms with their future or trying their best to make a difference.

I went to a variety of plenaries, workshops and round tables, some of them way over my head scientifically and some of them more focussed on the human side. I met people from the US, Canada, Australia, New Zealand, Italy, Peru and Japan and listened to presenters from many other countries: Malaysia, Germany, France, Denmark, Sweden, The Netherlands etc.

As I reflect on the week I am truly inspired by this awesome concentration of minds, hearts and souls for a single collective cause. The intellectual energy is phenomenal. The emotional force is similarly impressive. 

It turns out that Parkinson's, like other neurodegenerative diseases, is a tough nut to crack. The human brain is perhaps the most complex object we have yet to encounter, and deep inside it, very sophisticated biochemical processes are somehow going wrong, causing cells to die. There is still so much we don't understand and despite everything I listened to this week, it may be a few years yet before there is a breakthrough.

But it won't be for want of effort. 

Five days ago, I wrote that I hoped to be inspired. I certainly have been, beyond even my most optimistic expectations.