Year: 2023

Wendover Woods 50 miles

Part 3 – Easyjet don’t fail me now!

On Friday 7th July I’ll be leaving the WPC early to catch a flight back to Gatwick, trundle home and swap the car for the Campervan and then head off to Aylesbury to camp. Hopefully I’ll get a good night’s sleep as on Saturday I’ll be running (although more likely crawling) 50 miles through Wendover Woods for the third part of the “slam”. The fundraising is nearly at £1500 now, which is amazing!

The route is 5 loops of 10 miles and you can see from the picture how loopy it is. It’s also full of evil hills and the overall height gain is over 3200 metres (10500 feet in old money). It’s so evil we get an extra couple of hours to complete it – which means that the final cutoff will be at 00:30 on the Sunday morning.

The scale on the route profile slightly distorts the steepness – but it feels that bad when trying to run it! I’m hoping that the weather isn’t as hot as the SDW100 as the trees and hills will make it even worse with no breeze to cool us down. Hopefully I won’t bring the heat of Barcelona back with me!

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!

Overcooked it – a post in three parts

This update comes as a trilogy as I think it works better that way. So here’s part 1.

Over the weekend of the 10th and 11th June I helped as a volunteer at the Centurion Running South Downs 100 which goes from Winchester to Eastbourne. On the Friday morning I had been Daddytaxi and taken my son to Gatwick airport for a 6am flight, which meant leaving about 2am. I didn’t bother going to bed and when I got back I tried getting some sleep but one of the neighbours decided that Friday was DIY day. So after failing to get any rest I headed off to Winchester, well the Matterly Bowl to be precise.

It’s a fantastic location from which to start a race. It was a hot afternoon as we set up Race HQ in preparation for 350 runners. It was so hot the labels peeled off the toilets. God knows how hot it was inside them!

The evening was spent parking cars so the keen entrants could register early. After some pizza it was off to bed as it was a 3am alarm call on Saturday (yes, another short night). I was on car parking duty for the morning too (I blame my co-worker for the interesting arrangement towards the end!). After the race started I headed off home to have a shower, and then went over to Southease Youth Hostel, at mile 84 on the race route.

It was a sorching hot day, and the car thermometer registered 31 degrees. I did not envy the runners at all!

We set up the aid station, which is in a open sided barn next to the Youth Hostel. The hot weather impacted on the race, which meant we had a two hour gap between the anticipated race time and reality.

Eventually the runners started trickling in, and we dealt with their requests for drinks and food while giving them a pat on the back, or hugs, or a kick up the backside if needed. The race had suffered a huge drop out rate during the day, so when the sun went down the remaining runners (with only a couple of exceptions) made it to the finish. Working on an aid station gives you a great buzz from helping the runners on to their goal – sometimes you make the difference between a buckle (which you get for 100 miles) and a DNF.

Our aid station stint was from 4pm on Saturday through to 7am on Sunday. So that was another night without much sleep – and I paid the price on Monday. In spite of trying to sleep on Sunday night my body clock was so out of whack I took Monday off to catch up and get some kip.

“Utter Madness”

Back in 2021 after I finished the South Downs Way 100 miler I decided to stick to shorter distances (if you classify 50 miles as short…). This was for several reasons: training time, disruption to the family, failing body (well, failing brain to be more precise), and the requirement to slightly exceed the recommended dose for the meds.

So on the 14th April when Centurion Running announced a new 200 mile circuit (of the North Downs Way, Vanguard Way, South Downs Way, Wayfarers Walk, St Swithuns Way and finishing back on the North Downs Way) I sent Caroline a screenshot with the caption “sleep is overrated” she replied “Utter Madness, but I’ll share the crewing”.

It goes against all my reasons for stopping the long races, but just the thought of plodding along in the middle of December through the dark, rain and mud (within the time limt of 96 hours) has me grinning like an idiot. As Caroline said, “why not”?

But it wasn’t just a case of signing on the dotted line. There are 100 places and each application had to be accompanied by details of running and multi-sport experience which was necessary (in the words of the organisers) to:

“… instill confidence in us as organisers of their ability to cover very long distances between check points on foot, self-navigating in what could be extremely difficult conditions including 16 hours of darkness in every 24”

Luckily I’ve got a Mountain Leader award and competed in mountain marathons (have a look at LAMMS and OMMS if you want to see what they involve) all over the UK and in all sorts of weather so I typed up my CV ready for the entries opening on 1st May.

When the race was released I messaged Budgie (my ever-reliable training partner, and ever-reliable nutter) with the details and his reply was “Lol, just seen that, I think you should give it a go!”. With endorsement like that, who was I to disagree? And then he agreed to crew for me (no small sacrifice). This was taking shape.

Then I messaged Paula (running rockstar) who is full of useful ideas and inspiration. She’s got enough on her plate but she volunteered to help crew too. So now I had a support team. Yay!

Roll on May 1st, and some frantic copy and paste into a one line box on the entry form, and some crossed fingers.

Cue Budgie repeatedly messaging me all day “Are you in?”

This means that the 50 milers are now training runs for December, and I’ll have to do some recce runs along the parts of the route that I’ve never visited as well as a bit of planning.

Roll on December.

Happy World Parkinson’s Day!

Well, it’s actually the 11th April but I’m getting this blog in early. April is Parkinson’s Awareness Month (I think I’m quite aware about it, thanks all the same) and the global organisation “PD Avengers” is trying to get 11th April officially recognised as  a global health day to help raise the profile of Parkinson’s Disease, over 200 years since it was first documented by James Parkinson in 1817. Still no cure.

One of the benefits that Parkinson’s brings is that I am now on a medical condition driving licence. This entails renewing my licence every three years. I can understand the thinking behind this – mainly from a safety perspective. After all, someone suffering from a movement disorder* should be regularly assessed for safety. Unfortunately, one of the symptoms of Parkinson’s is micrographia (tiny handwriting) which in my case means my writing is more illegible than the average Doctor’s prescription, and the DVLA require a paper form to be completed by hand. So, my wife completed the form for me and I attempted to sign as required in several boxes.

If you’re not aware by now, on Saturday 8th April I will be running (walking and very likely crawling) the slightly more than 50 miles from Worthing to Eastbourne along the South Downs Way. We have a 13 hour cutoff, and based on current training it is likely to be a close run thing. I’m using it as a fundraiser for CureParkinsons, a charity whose sole purpose is to cure the disease. So far we have raised £1,000 which is a fantastic amount and hopefully we will add substantially to this over the four races that make up the Centurion Running 50 mile slam (details here: https://puckfarkinsons.uk/latest-fundraising/). The fundraising link is here: https://www.justgiving.com/fundraising/puckfarkinsons. One of the symptoms of Parkinson’s is fatigue – so I’m already handicapped when I toe the line at Worthing College (not that I’m getting my excuses in early or anything!)

*movement disorder my arse. There are around 40 symptoms of Parkinson’s Disease, the majority of which are not movement related – even if you count constipation (which is definitely a lack of movement) https://www.nhs.uk/conditions/parkinsons-disease/symptoms/.

4 Weeks To Go!

I should have typed this yesterday but ran out of time. It’s now 27 days until the South Downs Way 50 miler. We start at 8.30am from Worthing College, head north until we hit the South Downs Way, turn east and keep going until Eastborne – 50 miles and 5700 feet of climbing later. And it must be completed within 13 hours.

It’s the first event of four that make up the 50 mile “slam” of Centurion Running events that I’ve decided to do as a fundraiser for CureParkinson’s. https://cureparkinsons.org.uk/

The full list is here: https://puckfarkinsons.uk/latest-fundraising/ Hopefully I can stay fit and complete them all.

6 years ago this would have been a doddle. 6 years ago I didn’t have Parkinson’s and was the fittest I’ve been in my life. Now it’s a totally different ball game. I’ve completed longer races since being diagnosed but one of the main problems with Parkinson’s is that it is degenerative, and I’ve been struggling more and more with running over the last year. So, cheesy as it sounds, this challenge will really be a battle to complete.

I’m raising funds for CureParkinson’s and their quest for a cure. The glacially slow research into the disease means that any breakthroughs will benefit future generations rather than me – and I would gladly forgo a cure if it meant anyone else didn’t have to suffer this crappy disease. The link to my fundraising is here: https://www.justgiving.com/fundraising/puckfarkinsons and all donations are gratefully received.

One foot in front of the other…and repeat!


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…

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