No Hablo Español?
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.
Veering slowly, losing identity.
It’s been a while since my last post. That’s due to several reasons: holiday, work, taking my son to Uni, volunteering at races, running a mmidnight marathon, and the main one – parkinson’s.
We drove Buster the campervan down to Switzerland via the tunnel for a week with some friends in the pretty village of Saas Grund. The landscape is stunning, with glaciers on either side of the valley. The camping fees include free bus and cable car tickets so it was easy to get up into the mountains. One highlight was a night spent up in a mountain hut, which is quite luxurious really with thick duvets and a three course meal. The night up high was needed in order to get an early start in the morning for a trip to a nearby peak called the Jegihorn, involving some Via Ferrata.
For those who don’t know what Via Ferrata is, it is scrambling up a mountain clipped onto a steel cable often using metal rungs or pins hammered into the rock. It lets you take routes that are quite exposed. I didn’t take many photos while on the mountain because I didn’t trust myself not to drop my phone and it was a long way down!
Nearing the final climb the path splits. The hard path takes you via a suspension bridge to a hard climb. By this stage I was feeling really tired so we took the slightly easier route to the top, but Nige went out on the bridge with the Puckfarkinsons flag.
We scrambled to the top and had chance to admire the views which were spectacular. The path back down was pretty steep but we had to get a move on as thunder storms were forecast and it’s not ideal to be on top of a mountain holding onto a steel cable with lightning in the air!
After we returned home it’s been a busy couple of months at work, and I’m finding that it takes more and more of my energy to cope with that at the moment. I did take a day off to take my son off to Swansea University which is a really nice campus next door to the Gower peninsula. Luckily he’s got a disabled access room which is at least twice the size of a standard room. Unfortunately it’s on the 7th floor which on moving in day meant some hard work as the lift queues were quite long!
A while ago Budgie and I entered the “Midnight Marathon” on the South Downs for a giggle. Without much training we didn’t have high hopes. Unfortunately Budgie suffered from stomach issues and had to drop out after 12km. I thought I would get to half way and retire but at the checkpoint I felt (relatively) fine so carried on until the finish – which was an unexpected bonus, although it took three cups of tea before I felt vaguely human about 3am (it was the midnight marathon after all!)
The title of this blog entry is based on a shipping forecast t-shirt (I have a thing for t-shirts!) and seems quite apt. The disease is still progressing. My hands (especially the left) get stiff when the meds have worn off or aren’t working so typing is difficult. My voice is getting even softer which means repeating myself more often. The digestion is slower – which impacts on the effectiveness of the meds. I know it’s still early days yet – but I do wonder what the future holds knowing the only direction of travel is downhill.