68 DAYS TO GO!
Winter Downs 200. 13th – 17th December
The time is flying by and the race is in just over two months. Eek! Last weekend was a run along the first half of the Vanguard Way, which links the North Downs Way and South Downs Way. Apart from run training, it was chance to explore that section of the route (which I’ve never been on before) and see what the terrain was like. It wasn’t flat, but definitely gentler hills than the Downs that it links.
It was also a warm and dry day – neither of which I expect in December! It was great to be running again with Budgie, my ever-reliable training partner. It’s been a long time since we’ve had chance to have a bimble together, and we definitely earned the ice-cream at Forest Row.
We’ll be doing the last part in a couple of weeks’ time so hopefully the weather stays fine (famous last words!)
Apart from challenging myself, I’m doing the 200 miles to raise funds for Parkinson’s UK and Cureparkinson’s, charities which care for those with the disease and also research into a cure. The link to the fundraising is here: https://app.collectionpot.com/pot/puckfarkinsons200/
200 miles, in 4 days, in December.
What could possibly go wrong?
A big THANK YOU! to everyone who has supported me on my 50 mile Grand Slam, whether by raising awareness, sponsorship or helping me through the races. The Chiltern Wonderland report is here: https://puckfarkinsons.uk/finished-business/
I started the year with the goal of completing the slam, but things have somewhat expanded with the Winter Downs 200 which is my next fundraising challenge. The fundraising page is here: https://app.collectionpot.com/pot/puckfarkinsons200/
The fundraising is being split between Cureparkinsons and Parkinsons UK (which is why it is via Collectionpot this time rather than Justgiving, as fundraising via them for more than one charity is a pain).
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
Say “Ahhhhhhhhh”!
This week I started voice therapy.
My voice has been getting frustatingly quiet. After realising it was related to PD (another of the 40+ symptoms), I managed to get some voice therapy sessions through the NHS.
The sessions last half an hour by video link and it’s interesting to see (hear?) the process. Apart from saying “ahhhh” a lot, I had to come up with 10 phrases that I commonly use, which included “Hannah, we need to leave now!” and “Nice out”.
As well as saying long “ahhhs” I also was asked to think of different topics while trying to make my “ahhhs” last as long as possible. One topic that I was given was Beatles songs, and another was old schoolfriends/teachers.
I found that trying to make myself louder for longer was bloody hard work. Below is a picture showing how sweaty I was (as well as the classic hunched parky pose – another thing I’m trying to counterract).
The sessions last for four weeks so the office has to put up with my squawking for a while yet, but apparently I make less noise than the herring gull chick nesting on the roof.
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!)
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/.