End of being a guinea pig – part 2
The drug trial is nearly over. I have a phone app to use for 7 days and a movement sensor stuck to my lower back (which will make their minds boggle when they see the results of my tap dancing tonight). The main drugs part of the trial is complete. They took 7 test tubes of blood, a lumbar puncture (which went a lot more smoothly than last time) and a DAT scan, so for a while today I was radioactive but didn’t have a glow to go with it, most disappointingly.
I have to wait 18 months before we get the results of the trial, see whether I was on the Exenatide or the placebo, and find out my “trajectory”.
I’m pretty sure what my trajectory is because I sneaked a look at my DAT scan screen. I wasn’t allowed to take a picture because of ethics. I can understand the protocol of having the results explained to me by a medical professional but even I could see the change. In my Puckfarkinsons logo which was taken when I was first diagnosed, the “eyes” are like commas with a tail. When I started the trial the commas were more like full stops. Now they are smaller dots. The progression is obvious.
Speaking of when I was diagnosed, it’s 4 years to the day since I was given the Parkinson’s diagnosis. Happy Anniversary. Better get on and make the most of it.
I have to wait 18 months before we get the results of the trial, see whether I was on the Exenatide or the placebo, and find out my “trajectory”.
I’m pretty sure what my trajectory is because I sneaked a look at my DAT scan screen. I wasn’t allowed to take a picture because of ethics. I can understand the protocol of having the results explained to me by a medical professional but even I could see the change. In my Puckfarkinsons logo which was taken when I was first diagnosed, the “eyes” are like commas with a tail. When I started the trial the commas were more like full stops. Now they are smaller dots. The progression is obvious.
Speaking of when I was diagnosed, it’s 4 years to the day since I was given the Parkinson’s diagnosis. Happy Anniversary. Better get on and make the most of it.
Onwards and upwards!
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.
Small Steps
The first (and really crucial) step for next year’s fundraiser has been completed and I’ve entered the South Downs Way 50 miler. Only another three entries to go. Oh, and running them of course (lots of small steps). 50 miles, 4 times. It’s gradually dawning on me that I must be slightly weird – although I prefer “eccentric”. To quote Bernard Woolley from “Yes Minister”: “That’s one of those irregular verbs isn’t it. I have an independent mind, you are eccentric, he is round the twist”. I’d better start training soon (and the Strava updates will be linked to the fundraising page which can be found in my bio).
After a lifetime of using my calculator left handed, I’ve got to learn to be dextrous (rather than sinister) otherwise I make too many errors – not good for an accountant. No comments about the age of the calculator thanks, although it does give me a good giggle when people borrow it and stare blankly at the keys trying to work out what to press.
The room where it happens
Trip 7 (out of 10) to the UCLH research facility, which by a strange quirk of fate is two floors above the ISEH who investigated my “trolley leg” and came to the conclusion that it was neurological. So I know the building well!
London is a lot busier now – which also means more building work, more noise and more rubbish. I miss the peace of the last two years.
Three more visits left until my participation in this trial ends but as they are still recruiting guinea pigs it will be a while before the outcome is known – at least two years as that is the length of the trial, let alone collating the results. Standard for medical research, unfortunately.
One important step has been taken towards next year’s fundraising epic as I’ve entered the South Downs Way 50. This will be the first of four 50 milers and takes place on 8th April 2023. I’d better start training for it… (Fundraising link is in the main menu).
Unfinished business
It’s World Parkinson’s Day on 11th April. Yay.
Sorry for not putting any candles on the cake. As part of raising awareness the PD Avengers (and others) are sparking a conversation based on the sparks in cells in our brains. Some brains have fewer sparks than others, unfortunately.
This brings me back to the unfinished business. I’m raising awareness by completing the 50 mile slam (four races) that I didn’t finish in 2017 due to the undiagnosed disease that is taking away control of my body. And it is progressing. I will no longer be able to do the distances again that I’ve done, and it is a race (haha) between the disease and November 2023 when the last race in the series takes part. Unfortunately the last race is also the hilliest! The fundraising link is in the bio as Cure Parkinsons are searching for a cure (also unfinished business as there isn’t one, yet).
So thanks for any support whatsoever, whether donating to Cure Parkinsons or sharing my blog. Every bit helps.
Spirit (and maps!)
Guess where I’m sitting while writing this? Maps to me are like catnip!
Off to London for a rearranged Neurology appointment. I’ve made a list of questions to make sure that I don’t forget anything (increasingly common unless it’s written down 🤪). Wonder if they’ll change my meds because the disease is continuing its inevitable progression. Hopefully they’ll be able to help with the increasing stiffness down my left hand side, as well as some speech therapy as I’m definitely getting quieter (silver lining for the family, I think!).
Last weekend I was honoured to receive the “Spirit” award from Portsmouth Triathletes at their annual party.
This award nomination is (and I quote): “Spirit Award of the Year – Tell us who you think has shown, spirit, heart, determination within the Club or in support of the Tribe, and why?”
I’ve seen some of the kind comments from those who voted for me and they moved me to tears, so thanks to everyone who supported me. The Tri club have been a fantastic bunch of fellow nutters since I joined them and they have certainly given me a boost. I’ll never stop trying (even if it means moving sideways) to fight this pucking disease, and to raise as much awareness as I can.
There was a survey recently which found that 57% of people think Parkinson’s treatments halt the disease. Unfortunately nothing does, the disease progression cannot be halted – at the moment. So raising awareness is important to remove the misconceptions.
In January Nuero Heroes are attempting “Stand Up to Parkinson’s” with the goal of 145000 sit to stands to inspire those with PD (or connected) to exercise and raise awareness about the disease. Why 145,000? That’s the number of people in the UK with the disease.