Piping for Parkinson's

MARIE: We got back from Glasgow late last night after a wonderful week at the World Parkinson Congress. I had been looking forward to it for some time, but Jon had been more apprehensive and worried that it would be difficult and depressing to see others further along in the disease progression. Others we talked to at the Congress had had the same fears, but everyone – including Jon – found instead that it was a huge relief and liberation to be among people where PD was the norm. Nobody thought you were slow-witted just because you took a while to answer a question and nobody thought you were drunk just because you weren’t too steady on your feet. Bliss.

Over to JON: I’d been somewhat apprehensive about going, because I didn’t really want to see people in end-stage Parkionsons, and there were a few of those around – but they were OK, as it turned out, and it wasn’t frightening at all. Dinner on the first night was just me and Marie, while on the second night dinner was replaced by a huge reception for all the delegates (a bit of a challenge to juggle conference bag, wine glass, canapés, business cards, pill box and walking stick all at the same time, I can tell you!).

On the third night we joined up with a couple where the wife had attended the same talk for carers that Marie had been at, and we spent the last evening with a group of Parkies who all knew each other from one of the internet chat forums. These people came from all over the world, but what does that matter for a man who already lives most of his social life in cyberspace?

Back to MARIE: We learned a lot about Parkinson’s, both from listening to the presentations and, at least as importantly, from meeting others with PD and their partners, learning how they cope and sharing experiences. There were some pretty emotional moments too, particularly a speech at the opening ceremony that really hit the nail on the head and explained to all the researchers in the audience how imperative urgency is for those who live with a degenerative disease such as PD. (You can read the full text of the speech at http://www.wobblywilliams.com/DPBR3.html.)

I think we (Jon especially) have made some new on-line friends, and I know we’ll be very keen to join other PD events in the future.

By the way, the Congress is encouraging everyone to sign a global Parkinson’s pledge that calls on governments and organizations for more urgency, more joined-up thinking, and more involvement of people living with the disease in the efforts to find a cure. If you have PD, you need to sign this. If you are reading this blog but don’t have PD, Jon and I would count it as a personal favour if you sign the pledge. Go to http://www.parkinsonspledge.org/ to read the text and sign the pledge online.