Lost for words
Usually it’s quite easy to come up with a title for these posts, but for this one it’s just not popping into my thoughts. And here’s why:
For those who don’t know (and a refresher for those who do) at the beginning of Covid – back in 2020 – I enrolled into the Stage 3 trial of a diabetes drug called Exenatide, which had seen promising results from stage 2 trials. (The descriptions of the stages can be found here: https://cureparkinsons.org.uk/research/our-ilct-clinical-trials/
The trial period was for two years. It has taken until now to release the results due to the delays caused by Covid, as the process had to be paused twice for lockdowns and I pay tribute to the team involved for their perseverance and commitment.
I was told last month that I had been on the placebo. I suspected that I was, or that the drug wasn’t being effective as my symptoms have progressed over since 2020.
The lead for the trial held a webinar on the 14th for the trial participants so that we could be told the results ahead of the general release. During the in-depth and well-structured presentation we were told the disappointing news that Exenatide made no difference to the progression of the disease.
The Cure Parkinson’s Trust disclosure is here: https://cureparkinsons.org.uk/exenatide/
One of the reasons for the struggle to find a title is the irony of the timing of the trial. Covid appeared, had millions thrown at it and a vaccine engineered, produced and implemented, all within the timescale of our trial for a disease-modifying drug. Not a vaccine, not a cure, but one that might at best SLOW the progression of the symptoms of Parkinson’s. A disease that was first medically described over 200 years ago.
So the research continues. And I will still volunteer to be a guinea pig.
Thanks to all the team involved with the trial. I hope that all their efforts will not be in vain.
Time flies by…
Ooops, it’s been a while since my last post, so this is a bit of a catch up. While making plans, filming for CureParkinsons, helping out at Centurion Races on the Thames Path, North Downs Way and South Downs Way, I finally decided to see my doctor about my headaches which have been getting worse. After agreeing I had high blood pressure (and starting to treat that as the headacge meds said deal with that first), the doctor said I’m anaemic which explains why I’m so bloody tired lately. It’s bad enough with the fatigue that Parkinson’s brings let alone anaemia on top. Now I’m waiting for more blood tests so we can work out how to treat that.
Yay, Parkinson’s and anaemia. Anything else?
The first weekend in May was spent mainly in the picturesque village of Clifton Hampden, on the Thames just downstream of Abingdon. We were on a Centurion Running aid station at the village hall about 88 miles into the Thames Path 100. As the hall is slightly away from the river we also had to have someone on the bridge pointing runners into the village and back onto the path to make sure everyone didn’t cut the route (or go the wrong way when returning to the river!). The aid station was open all night so it’s a long shift but luckily we get the Bank Holiday to recover.
A couple of weeks later I was back helping again at the North Downs Way 50. From marshalling the carpark entrance before the start, to crowd control at the finish it was another beautiful day spent in great company.
The beginning of June was spent being interviewed for CureParkinson’s as part of a film for raising awareness. Due to the pet-filled complications of our house we de-camped to mother-in-laws and then to a local field so I could be filmed running. Hopefully my contribution will be of some use.
The following Friday to Sunday was another stint supporting Centurion Running. It was a long session with only a short break Saturday night so I think I’m going to have to pace myself better in future! It was another glorious weekend, starting with marshalling at the Matterley Bowl near Winchester on Friday, helping at the aid station at Queen ELizabeth Country Park (22.6 miles in) and then crewing the aid station at Southease Youth Hostel (mile 84).
At the beginning of July I ws invited to the local Parkinson’s support group in Cosham to give them a talk about my running adventures. I didn’t spot anyone falling asleep so hopefully it went down well. There was a good discussion afterwards about taking extra medication for exercise so I hope I don’t cause any overdose issues – it is a bit of trial and error when judging the medication levels and timing.
In amongst all the excitement I had been getting massive FOMO watching runners taking part so I’ve signed up for the Thames Path 100 for next year. I would be training for it right now, but have pulled my calf (twice!) so I’m working on that before getting back on the trails. Having completed the 50 mile slam last year I was trying to work out what next, so the next step is obvously the 100 mile slam. So in 2026 I’ll be doing four 100 milers: Thames Path, North Downs Way, South Downs Way and The Autumn 100. Should keep me out of mischief while fighting the progression of the disease. Hopefully without the added bonus of anaemia.
Nearly there…
One week to go until the final 50 mile race of the Centurion Slam, the “Chiltern Wonderland”. To quote the race website “The CW50 is a 50 mile single loop around the beautiful Chiltern countryside. The route takes in 5600ft of climb and visits picturesque villages, bursting with history, featuring locations made famous by British film & television.”
Hiding in the wonderful description is the height statistic- it is only 100ft less ascent than the South Downs Way, so it will still be a tough day in the office. Although it is offset by the route going past Cobstone Windmill (which is home to Caractacus Potts in the film “Chitty Chitty Bang Bang”).
Hopefully the weather will be a bit cooler by then. Thanks to everyone who has supported me so far! (And the fundraising link is in the menu somewhere…)
In other news, the Parkinson’s is progressing. My left hand side tremor is becoming more of a constant rather than intermittent thing, and my left arm has developed “tennis elbow”-like symptoms and gives me burning pain in my left thumb when extending my arms, so, amongst other things, putting my socks on is daily agony (what with my feet being so far away, lol). Typing can be a bit hit and miss (more miss than hit) when the left hand is waving around on its own.
At the end of December I’m back to the National Neurological Hospital for a consultation about Deep Brain Stimulation (DBS). If I’m a suitable candidate then the process involves electrodes being inserted into my brain, controlled by a pulse generator (like a pacemaker) which sits near my collarbone. It’s not a cure, rather a different form of treatment and does not stop the disease from progressing.
Nothing exists at the moment that does.
Which is why I fundraise to help research into the disease. And although next week I’ll hopefully finish the final 50 mile race, my training will continue. Because my next challenge is my biggest one yet: 200 miles.
https://www.centurionrunning.com/races/winter-downs-200-2023
World Parkinson’s Congress 2023
I originally had the intention of blogging day by day but I was soooo tired at the end of each day there was no chance of typing anything that would do it justice!
Day 0 – 4/7/2023
After a mad dash across Barcelona on Monday to register just as they were shutting up shop (thanks to Easyjet), I met up with Nick and Becky for dinner. Nick, who works for the NHS, set up our local “Parkies at the Pub” group for those of us who can’t make the usual Parkinsons meetings during the day (as we’re working). He and Becky were volunteering at the congress, and all the volunteers in their purple t-shirts were really helpful and friendly throughout the week. Then it was up early on Tuesday for a morning run along the beach before heading into the conference centre. (As you can see it was a beautiful sunrise)
Approaching the centre and on entering I was greeted by some friendly signage:
The session I had chosen was “Advocacy and Activism in PD” – and I was hoping to meet some of my PD social media heroes. It was a useful session, and a bit eye-opening too, with one advocate, Kabugo Hannington Tamale, explaining how in Uganda that PD is seen as witchcraft, with sufferers being locked away (including his mother). Later in the week he would receive an award for outstanding community service, and well deserved it is too.
After the session I said thanks to Larry Gifford and his wife Rebecca (it’s not madatory for wives to be called Rebecca, honest). They host a podcast called “When life gives you Parkinson’s” and it was a helpful guide through the early days of my diagnosis when I didn’t know much about the disease or how it would impact on me.
After the session I had a quick trip into Barcelona for some sight-seeing, but I soon had to head back to the opening ceremony. After we left the packed hall and headed for the welcome reception we were applauded by a guard of honour of the volunteers – which was really touching.
Day 1 – 5/7/2023
I was up early again on Wednesday (it’s not difficult, I was waking up at 5am at the latest anyway thanks to PD) to join the “dopamine dunkers”. They were led by Richelle Flanagan (another of my PD socical media heroes) who had started a daily plunge into the sea (or nearest body of water) to boost her dopamine levels. (The photo is from Friday’s “dunk”) Having a splash in the Mediterranean was bliss compared to my usual swim in the Solent off Portsmouth.
I’d volunteered to do a radio interview together with Cureparkinsons in order to help raise awareness about PD. They recently carried out a survey which showed a disappointing level of understanding about the disease and its symptoms. So I had to find a quiet corner of the conference centre, which wasn’t that easy with nearly 3000 people millling about. I took the request to “keep your answers to less than 30 seconds” to mean “as few words as possible” but, with some prompting to expand my replies, I hope it went ok.
My first session was a round table discussion about “Aerobic exercise and PD”. There were a dozen of us gathered around and we covered a lot of ground (no pun intended) about types of exercies, dosing, side effects, adherence and loads of other useful discussions.
Part of the congress was a large exhibition area filled with stands from charities, medical companies and a large poster display covering all sorts of topics. It was really interesting to chat with Cureparkinsons, the Michael J Fox Foundation and others.
Day 2 – 6/7/2023
After another jog along the sea front with another stunning sunrise it was off to an exercise session with the Neuroheroes. They were imaginative, full of ideas, fun, and yes, that is a bubble machine.
After lunch it was it was a workshop session on “Food and Nutrition: The Ins and Outs” which covered swallowing (a common problem with PD), best options for nutrition (which could be summed up as a variant on the Mediterranean diet) and constipation (a really common problem!). There was something that tickled me about the welsh nurse pronouncing “poo” with her accent.
Following the break it was another workshop on “Which exercise is the best time investment?” which covered motivation, appropriate exercise, and online options.
That evening Nick invited me along to the NHS dinner. There were 19 of us and a great time was had by all. I got to meet another of my social media heroes, Jo Yaldren, who had taken part in a documentary “DBS and me” which explored her journey with deep brain surgery. As it had recently been raised as something I should consider, it was great to meet her.
The NHS crew pointed out, normally at medical conferences it is usually only the medical practitioners that attend. The WPC was different because so many of the people at the congress had PD, and the interaction added a whole new dimension.
Day 3 – 7/7/2023
Friday was a last trip down to the beach for a splash followed by an award ceremony for Kabugo and Richelle for outstanding community service. It was a moving experience and I don’t think there were many dry eyes.
After a final tour of the exhibition and lunch I had to miss the afternoon sessions and the closing ceremony as I was homeward bound to make sure I could get to my next challenge, the Wendover Woods 50 miler in good time.
(Apologies if this blog seems brief but the meds aren’t helping my typing hands this evening and they’re really stiff so typing is painfully slow!)
Barcelona
part 2 – World Parkinson’s Congress 2023
On the 3rd July I will be heading off to Barcelona for the World Parksinson’s Congress 2023. About 4000 people will be attending to share all sorts of information and ideas. The programme is over 150 pages long which is a lot to take in when trying to work out which sessions to attend over the three days (Tuesday is a “pre-congress working group” session).
Easyjet have already forced me to change my travel plans having cancelled one of my flights – luckily I am flexible on my outward journey (see part 3 for why the return leg is a bit more time critical). The WPC organisers have sorted out my hotel and a couple of friends are also going so I won’t be a total stranger while on tour. We’re meeting up with the NHS crew for a meal one night (Lebanese – yes I know, sampling the local food!) just round the corner from my hotel, which is quite handy.
I’m packing my running gear and hope to get some early morning runs in before heading into the conference centre. I was planning on exploring in the evenings and taking pot luck on restaurants that take my fancy. I’ve never been to Barcelona and I’m really looking forwards to it!
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!
End of being a guinea pig – for now?
Off to London for the last day of the drug trials. I have to have “off meds” observations done, then go to another building for my DAT scan meds (the one that makes me radioactive) then back for some “on meds” observations, including a lumbar puncture and then the DAT scan itself. The “off meds” observations means no medication since yesterday so with rushing to the train this morning it means typing this is entertaining to say the least. The DAT scan will mean that I get to see how my “eyes” are shrinking. By “eyes” I mean the part of the Puckfarkinsons picture that is the Substantia Nigra, the part of the brain that holds dopamine – the magic bit of movement (amongst other things) – that people with Parkinson’s lose as the disease progresses.
More updates to follow…
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.
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).
It’s all in the wrist…
I’m aware that it’s been a while since I’ve posted anything on the blog, which is a failure on my part.
This blog is supposed to help awareness about the disease, including how its progressing in my brain as well as developments in research. And my silence is not helping that, so I’ve resolved to post more often.
I think that it’s partly down to reluctance on my part to put out depressing posts. However I’ve realised that a blog should be warts and all, so from now on the bad days will get mentioned.
From the pictures you might think I’ve developed a watch fetish to go with the one I already have for t-shirts but it’s the 2nd part of one of my recent trips to London for the programme that is tracking the progression of the disease over a long period. The wrist motion trackers monitor me for a week and then I post them back.
Over the past few weeks I’ve noticed my leg tremor getting worse and, when stressed, my hand coordination (typing etc) is slow and occasionally erratic. I’m trying to build a 3d printer and it’s making the assembly a lot harder than before. When I’m at work trying to rush out an email it’s painfully slow. It’s not helped by the brain fog that goes with PD and makes every day an effort to just get going.
World Parkinson’s Day is April the 11th but I won’t be celebrating if you don’t mind. Another YOPD sufferer is David Sangster (link to his YouTube channel is in my bio) and he has asked people with Parkinson’s to answer 3 questions with a video. The questions (and my answers) are:
1. How does Parkinson’s feel?
Like a perpetual tiring battle against an invisible foe.
2. What is the worst thing about PD?
At the moment it’s brain fog, closely followed by the lack of movement in my left hand side.
3. What do you fear the most?
Losing myself to this disease. I know things like my personality are changing but I don’t want to stop being me. When I stop laughing then that will be the end.