Welcome!
Welcome to my blog about my journey with Parkinson’s. The original blog was on instagram, which I still post on too.
Instagram feeed is below:
![[No picture as we were dodging the rain] Back to Queen Square, London to investigate Deep Brain Stimulation (link in bio)
Prof Foltynie went through the pros and cons, as well as the timescale. After a long and in-depth discussion we went with the chemical option for now, with another drug to make my levodopa more effective.
It's a balancing act between using the drugs and their (effective) replacement with DBS. He asked me what my living with PD was like. I decided against the short answer: "it's a bit shit, really" .
The Prof is also in charge of the drug trial I was involved in, so we had a good chat about that as well. The results are due out later this year so it'll be interesting to see whether I was on the placebo or the real thing.
#parkinsons #puckfarkinsons #parkinsonsawareness #cureparkinsonstrust #parkinsonsuk #danceforpd
#parkinsonssucks
#parkinsonsdisease](https://puckfarkinsons.uk/wp-content/uploads/2022/05/441395354_458649596566340_4340049003739087252_n-320x320.jpg)
![[No picture as we were dodging the rain] Back to Queen Square, London to investigate Deep Brain Stimulation (link in bio)
Prof Foltynie went through the pros and cons, as well as the timescale. After a long and in-depth discussion we went with the chemical option for now, with another drug to make my levodopa more effective.
It's a balancing act between using the drugs and their (effective) replacement with DBS. He asked me what my living with PD was like. I decided against the short answer: "it's a bit shit, really" .
The Prof is also in charge of the drug trial I was involved in, so we had a good chat about that as well. The results are due out later this year so it'll be interesting to see whether I was on the placebo or the real thing.
#parkinsons #puckfarkinsons #parkinsonsawareness #cureparkinsonstrust #parkinsonsuk #danceforpd
#parkinsonssucks
#parkinsonsdisease](https://puckfarkinsons.uk/wp-content/uploads/2022/05/441395354_458649596566340_4340049003739087252_n.jpg)
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:
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.