July 2023 is the date of the world Parkinson’s congress which is being held in Barcelona. I’ve never been to Spain so it’s going to be an adventure. I don’t speak Spanish either however my youngest is doing Spanish GCSE so we have decided (well I’ve decided) that we will speak Spanish on the school run 2 days a week which should help both of us!
The conference starts on a Tuesday and finishes on the Friday afternoon which is handy because I have to fly back that evening and then take the campervan over to Wendover Woods for a 50 mile race that starts early on the Saturday morning. It forms part of the 50 mile “grand slam”that I’m aiming to complete next year in order to raise funds for the Cure Parkinson’s trust (https://puckfarkinsons.uk/latest-fundraising/ ). Hopefully the heat of Barcelona will help me prepare for a warm race.
I became aware of the Cure Parkinson’s trust when I was initially diagnosed because of the BBC programme about a GDNF trial that had concluded the previous year. GDNF stands for Glial Derived Neurotrophic Factor (no, I don’t know what it means either) which is injected directly into the base of the brain using really tricky surgery and targets the bit of the brain that Parkinson’s sufferers are losing. The commitment and bravery shown by the trial participants was truly inspiring. One of the trial participants was Tom Isaacs and he was one of the founders of the trust.
A couple of days ago I received a newsletter about a further trial for GDNF which is potentially in the pipeline subject to a successful fundraising round. My current drugs trial is coming to an end in January 2023 and I am looking for future trials to take part in, which means I have some thinking to do do about whether to volunteer for the next stage and some discussions with the family as well – I’m well aware that this disease isn’t just about me. The news about the trial is here: https://www.parkinsons.org.uk/news/making-progress-towards-potential-new-gdnf-trial, and it might take up to 4 years to get the results.
Update: I showed this post to my wife to check the content (she did mention that there were a few spelling mistakes – so that’s my fault if any remain) and she reminded me that she had asked, when we were watching the original BBC programme and the doctors were drilling into skulls and feeding tubes into brains (snaking around blood vessels) whether I would volunteer for something like that. I had said yes, because I would willingly do anything to help the people who get this shitty disease in future.