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/
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:
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!)
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!