Oops I did it again…
To be more specific, I’m going to do it again. Run a hundred mile race, that is. Only this time there’s going to be four of them between May and October 2025. Although the symptoms are getting worse (typing this is a nightmare and so sloooow!) I can still run (more of a jog/walk) so thought I had better try while I can.
Centurion Running host the four races (details in the fundraising link pinned at the top) on the Thames Path, North Downs Way, South Downs Way, and a mix of the Thames Path and the Ridgeway for the last race in October.
I need to do more exercise to slow the progression, so hopefully the training this winter will have a double benefit of helping my symptoms and make each race less painful (don’t quote me on that!)
100 mile grand slam fundraising
The link to the fundraiser is above. For each of the races there will be a live tracker if you like “dot watching”.
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.
Sign the Parky Charter petition
(please)
April is Parkinson’s Disease awareness month, and April 11th is World Parkinson’s Day.
Still no cure.
On World Parkinson’s Day the Movers and Shakers Podcast, Parkinson’s UK, Spotlight YOPD and Cure Parkinson’s are delivering a petition in support of the “Parky Charter”.
“What is the ‘Parky Charter’?” I hear you cry. Well, dear reader, let me explain.
It is a five point plan involving Government and NHS support which aims to support those with this incurable disease. It will remedy the gaps in care where anyone with symptoms is not left in limbo for months on end awaiting diagnosis, and also ensure that the degrading ritual of applying for benefits is made easier. More details can be found here: https://www.moversandshakerspodcast.com/post/sign-the-petition-here-to-support-our-parky-charter
Please support by signing the petition.