Dancing and Shaking

Day 3 of World Parkinson’s Congress

No time for a lengthy account of day 3 of World Parkinson’s Congress because I am off to the airport to catch my flight home - but here are just a few highlights.

I have of course heard of the benefits of dance for people with Parkinson’s - my lithe and elegant friend Paul Mayhew-Archer is a big fan. My wife, a ballet enthusiast who takes two classes a week, has also been telling me I should have a go, a message at odds with her view over the years that I’ve got two left feet. But I had for some reason fought shy of the idea - until I ran into Sandra, an Australian friend of a friend. Within 30 minutes of meeting me she was dragging me upstairs to a class run by dancers from America’s legendary Mark Morris group.

Sit on a chair waving your arms around? This is not for me, I thought as we got underway. But within seconds I was absorbed in the moves demonstrated by brilliant teachers, swaying, stretching and pointing to a piece of music by Satie, then a number of folk songs. 45 minutes later I left, physically, mentally and spiritually refreshed by what had been an amazing experience. I’ll be back.

With Adam Tate of Fahr Beyond

Later I sat eating the free sandwich lunch and chatting with Adam Tate, who I thought was just another Parkie I’d first met online. But quickly I learned he had a remarkable and frightening story to tell. He had suffered what seemed to be symptoms of Parkinson’s in his early 20s but was eventually diagnosed with something a lot more obscure, a neurodegenerative condition known as Fahr’s Disease. On top of some of the characteristics of Parkinson’s this involves not just the death of brain cells but the actual calcification of the brain - effectively turning parts of it into bone.

Adam, one of just 200 people in the UK diagnosed with Fahr’s, learned from a scan that this had already happened to a chunk of his brain and was also told that the condition was likely to shorten his life. What is remarkable about him is how he has reacted - by setting up his own charity Fahr Beyond to raise awareness of the condition.

It is of course tiny and needs to work with bigger organisations to have any impact so I was pleased when the research chief of a major Parkinson’s charity dropped by our table for a chat and I was able to connect him with Adam.

But much of my energy on my last day at the event went into working with Gillian Lacey-Solymar and Paul Mayhew-Archer to make a special edition of Movers and Shakers about World Parkinson’s Congress. Of course, we were only at half-strength, with Jeremy, Mark and the judge unable to make it, but we got some great guests and had a few laughs. It should be available on Saturday so look out for it.