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.
Wow! What an adventure!
Just a short post to update you about the race.
Mud, floods, some sun, mostly night pretty much sums it up.
I finished in 89 hours 3 minutes 13 seconds in 50th place (out of 56 finishers).
The full race report is here: https://puckfarkinsons.uk/winter-downs-200-centurion-running/
The fundraising has reached over £2200! The link to that is here: https://app.collectionpot.com/pot/puckfarkinsons200/
7 days to go!
Eek!
In a week’s time I should hopefully be 40 miles (65 kilometres) into the Winter Downs 200. I’m doing it because it is likely to be the last long race that my brain lets me attempt as the Parkinson’s Disease progresses.
I’m fundraising at the same time and the link is here: https://app.collectionpot.com/pot/puckfarkinsons200/
My race crew has been prepped and I am really grateful for their support. Without them this race would be another level of difficulty, even with Parkinson’s. They have given up their holidays to give me the best chance of completing the 206 miles (it’s a trail race, you always get bonus miles!). My cunning plan is to go slow and steady which means they will be spending a lot of time hanging around in the cold and rain waiting for my smiling face to rock up.
My race number is 101 and the live link is here: https://live.centurionrunning.com/WD200-2023/. It’ll be easy to spot me on the map – I’ll be the one at the back!
28 days to go!
Now the dance show is over, time to concentrate on the Winter Downs 200
Last weekend was our dance show, “One Night Only”. We had been training for this since January – how they manage to do it in a week, every week, on Strictly amazes me. It was a long day with the dress rehearsal running slightly late due to technical issues. It was all the more painful because the family had had McDonald’s for breakfast whereas I made do with an orange juice so that nothing could interfere with my meds.
We (the adult tap/dance class) had 3 routines to perform: “Boot Scootin’ Boogie” (line dance), “Remembrance Day” (tap dance) and “Hairspray” (tap). For those that know Hairspray, I was Edna Turnblad so was dancing in a dress. The looks on the kids faces as they walked past me while I was waiting to go on stage were hilarious. We had a great time on stage with the odd fluffed part of our routine but Hairspray went really well – hopefully the audience enjoyed it as much as we did.
It was a long day, and the stress/nerves wiped me out, so the planned run on Sunday was binned for a day of rest.
Tonight’s entertainment was a Zoom call hosted by the Centurion Running, which ran (no pun intended) through the important points around the race and covered everything from the kit check before the start, through to how long you could crash at the race HQ after you had (hopefully) finished.
The briefing emphasised how our safety was key, which means that having the proper kit is essential. Not just something that will suffice for the kit check, but could potentially save your life if something went wrong or the conditions live down to our worst expectations. Apart from the official kit list other suggestions of useful extras were being made, including goggles which could be vital up on the South Downs as it was likely that a head wind will await us, which could also bring sleet, snow or hail.
In spite of the potential pitfalls (or because of them?), the buzz around the race is amazing with real positivity coming over the interractions on social media. The important thing for me will be to pace myself as this will be crucial to me being able to complete the 205 miles (it’s been rounded down for the race name) within the 96 hours. The next four weeks will be spent ticking over and maintaining fitness to make sure I can get to the start line, as I suspect I’ll only get one crack at this.
One piece of kit that’s not on the official list is my mood spinner. I dare say that several times it’ll get used to express how I’m feeling during the race!
Nice out…
A week of lows and highs
It’s the halfway point between my races – 44 days since the Chiltern Wonderland, and 44 days until the Winter Downs 200. The planning has intensified, with lots of map work and the timing spreadsheet is becoming a thing of beauty with night and day coloured sections. However, I am always aware of the saying “no battle plan ever survives the first encounter with the enemy” so the idea is to enjoy the journey and adapt as necessary!
The week started with a bit of a downer – but one that has played on my mind for a while. The common statement about Parkinson’s is that “you don’t die from Parkinson’s, you die with it”. To simplify, your life expectancy doesn’t shrink but you die from the other ailments that Parkinson’s brings. Yay, what a bonus that is.
However, when you follow the social media groups, something doesn’t ring quite true about the situation, and a new report in nature.com shows that the younger you are, the shorter your life expectancy. (Link to the report is here: https://www.nature.com/articles/s41531-023-00588-9). For someone aged 55 who would normally expect, on average, to live another 25 years this is shortened to 14 years with PD. Happy Days, but to repeat myself, the plan is to enjoy the journey and adapt as necessary!
Making the most of what’s left, it was another recce of the Winter Downs 200 (fundraising link: https://app.collectionpot.com/pot/puckfarkinsons200/) with Budgie and Steve, who are part of my support crew. We travelled the southern half of the Vanguard Way, which links the North Downs and South Downs Way.
It was a wet day, and the amount of rain that has fallen recently became clear when we came across several flooded sections, and had to wade thigh deep at a couple of points. Hopefully we will get a dry spell of weather in the lead up to the race.
We did have a laugh as we splashed along which helped raise the spirits, and encountered some unexpected wildlife as a pig had escaped from its field. We also rescued two sheep who were trapped in a bramble hedge.
The route was twisty and definitely needs me to be on the top of my map reading game to avoid wasting time and unnecessary miles for the legs.
Facebook reminded me that 10 years ago I was taking part in the Original Mountain Marathon in the Cheviots, splashing around in muddy puddles. Some things don’t change…
50 days!
(scratching around for a blogpost title of a potted catchup of the past week…)
Having had a banging headache all day this is a bit later than planned (and probably sounds a bit jaded). I did try going into the office but trying to look at a screen was too painful, even with sunglasses. Consequently I haven’t taken enough meds today and typing this is…challenging. (Apologies for the typos). [update: it’s really frustrating with the tremor causing multiple duplications both of letters and deletions. The original title was 51 days…]
It’s been an interesting week. I went for a long run on Friday 13th, in the knowledge that the weather would be biblical, and it lived up to expectations. The run turned into a walk, with the footpath churned into a chalk stream and so slippery that anything faster than a plod left me skating like Bambi. Having fallen over on the last three runs I had no desire to add to that total. Eventually the rain stopped and the stars came out. I tried taking a video during the rain but the phone didn’t want to know! I did get to share some of the path with a badger as it headed into the woods at Kingley Vale.
I ran on the Friday because I was due my covid and flu jab on Saturday and I left the weekend training free just in case of a reaction. Good move, as with a jab in each arm, they got more painful as the hours progressed and also left me feeling flattened. I dragged myself down into Portsmouth on Sunday morning for the Great South Run. I was stationed at a spot near the charities corner (and their sound systems), Power Up Station (and its sound system) and the Batala drummers. It wasn’t quiet!
It was a lovely sunny morning for a run, and it was fun marshalling the lemmings (sorry, locals) as they tried to cross the road, sometimes when there was actually a gap between runners. It was also great to catch up with some friends who were helping out too.
The rest of the week was spent trying to fight off the effects of the jabs at work, and on Saturday was a trip to the Centurion Running shop for the final bits of kit for the long run in December (fundraising link here: https://app.collectionpot.com/pot/puckfarkinsons200/). The shop is excellent, and I made the most of the free tea, coffee and homemade flapjack!
After a 4 hour round trip (thanks to the A3/M25 roadworks) it was off for a run as I needed to get the legs moving again and keep practicing with the race gear to reduce time spent faffing, such as with putting on overtrousers etc. whilst wrangling the rucksack.
The rain had left the tracks near me a little damp…
The run to QE and back turned into a bit of an upper body workout too, with a large tree across the path meaning that I had to do some climbing.
Sunday was a quick bimble with Willow around QE, and a chat with Budgie over coffee and cake about our recce of the southern section of the Vanguard way this weekend. That just leaves the section at the start between Juniper Hall and the North Downs Way to check over as some reports say the route is a bit “vague”!
Owen Delany has produced another classic “map” for Centurion Running – to give you an idea of the route: