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…
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.
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/.
Never lost…just exploring
Back to London for an appointment with my neurologist to find out how I’m doing (or rather, how they think I’m doing).
It’s a chance to spend some time with my eldest (who’s late for breakfast again) and to explore some of London that I didn’t find when I used to work here.
Showtime!
Back in January 2020 I posted about taking up tap dancing and being in a show. Well, Covid put a stop to lessons for a while, but the show is in a couple of weeks! We’ve learnt a new routine (“learnt” doing a lot of heavy lifting in that sentence) and this week got to try on our costumes. I’ll freely confess that I’m both crapping myself and really looking forwards to being on stage. Adrenaline really brings on the shakes thanks to Parkinson’s so I’m really hoping the meds do their job on the night. It’ll be great to be on stage with two of the kids and doing tap dancing rather than the “Daddy dance” which is normally the comedy element to the show (our RIverdance was epic).
It’s all in the wrist…
I’m aware that it’s been a while since I’ve posted anything on the blog, which is a failure on my part.
This blog is supposed to help awareness about the disease, including how its progressing in my brain as well as developments in research. And my silence is not helping that, so I’ve resolved to post more often.
I think that it’s partly down to reluctance on my part to put out depressing posts. However I’ve realised that a blog should be warts and all, so from now on the bad days will get mentioned.
From the pictures you might think I’ve developed a watch fetish to go with the one I already have for t-shirts but it’s the 2nd part of one of my recent trips to London for the programme that is tracking the progression of the disease over a long period. The wrist motion trackers monitor me for a week and then I post them back.
Over the past few weeks I’ve noticed my leg tremor getting worse and, when stressed, my hand coordination (typing etc) is slow and occasionally erratic. I’m trying to build a 3d printer and it’s making the assembly a lot harder than before. When I’m at work trying to rush out an email it’s painfully slow. It’s not helped by the brain fog that goes with PD and makes every day an effort to just get going.
World Parkinson’s Day is April the 11th but I won’t be celebrating if you don’t mind. Another YOPD sufferer is David Sangster (link to his YouTube channel is in my bio) and he has asked people with Parkinson’s to answer 3 questions with a video. The questions (and my answers) are:
1. How does Parkinson’s feel?
Like a perpetual tiring battle against an invisible foe.
2. What is the worst thing about PD?
At the moment it’s brain fog, closely followed by the lack of movement in my left hand side.
3. What do you fear the most?
Losing myself to this disease. I know things like my personality are changing but I don’t want to stop being me. When I stop laughing then that will be the end.
Different sort of lab rat today
When I was first diagnosed I signed up for a study which tracks the development of Parkinson’s to help with future studies of the disease. Covid interfered with the follow up visits. Today was an MRI scan along with lots of cognitive and movement tests. My brain (what’s left of it) hurts. Lots of lists of numbers (with me repeating, re-ordering and reversing), words, images, colours and blood tests too.
They videoed my movement which included foot tapping (like a bass drum) which illustrated that the disease is progressing as my left foot could barely move after a few seconds. So bang goes any chance of me as a drummer…
(Yep, Parkinson’s sucks)
Next week I’m back again for the next drug trial update, so more tests. Hopefully it will help for the future.
#parkinsons #puckfarkinsons #parkinsonsawareness #cureparkinsonstrust #parkinsonsuk #danceforpd
#parkinsonssucks
#parkinsonsdisease
Spirit (and maps!)
Guess where I’m sitting while writing this? Maps to me are like catnip!
Off to London for a rearranged Neurology appointment. I’ve made a list of questions to make sure that I don’t forget anything (increasingly common unless it’s written down 🤪). Wonder if they’ll change my meds because the disease is continuing its inevitable progression. Hopefully they’ll be able to help with the increasing stiffness down my left hand side, as well as some speech therapy as I’m definitely getting quieter (silver lining for the family, I think!).
Last weekend I was honoured to receive the “Spirit” award from Portsmouth Triathletes at their annual party.
This award nomination is (and I quote): “Spirit Award of the Year – Tell us who you think has shown, spirit, heart, determination within the Club or in support of the Tribe, and why?”
I’ve seen some of the kind comments from those who voted for me and they moved me to tears, so thanks to everyone who supported me. The Tri club have been a fantastic bunch of fellow nutters since I joined them and they have certainly given me a boost. I’ll never stop trying (even if it means moving sideways) to fight this pucking disease, and to raise as much awareness as I can.
There was a survey recently which found that 57% of people think Parkinson’s treatments halt the disease. Unfortunately nothing does, the disease progression cannot be halted – at the moment. So raising awareness is important to remove the misconceptions.
In January Nuero Heroes are attempting “Stand Up to Parkinson’s” with the goal of 145000 sit to stands to inspire those with PD (or connected) to exercise and raise awareness about the disease. Why 145,000? That’s the number of people in the UK with the disease.
Visit 5. London bound
eautiful sunrise at my favourite time of year. I’m off to London again to the UCLH Research Facility to collect the next batch of drugs (along with a blood test, weight measurement and questionnaires etc). Visit 5 (out of 10) and the time is flying by. We’re in week 36 out of 96 and, without wishing my life away, I’m already looking at what research is coming along in future to see if I can take part.
I’m noticing more and more the little things that have to be adapted: doing the ironing takes longer when your left arm doesn’t do as requested; buttering toast has to be done with the “wrong hand”; buttoning a shirt takes a while longer as I wrestle with fingers that move like sloths.
Sitting on the train is slightly uncomfortable as the evil thumbs wielded during my massage left quite a bit of bruising (well it feels like it anyway!) but my back and hips feel so much better than they have done in weeks so I’m hoping that the end is in sight for my back pain and I’ll be able to get a bit fitter for the Portsmouth Marathon just before Christmas (sorry, was I supposed to be taking it easy?)