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/.
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…
No Hablo Español?
July 2023 is the date of the world Parkinson’s congress which is being held in Barcelona. I’ve never been to Spain so it’s going to be an adventure. I don’t speak Spanish either however my youngest is doing Spanish GCSE so we have decided (well I’ve decided) that we will speak Spanish on the school run 2 days a week which should help both of us!
The conference starts on a Tuesday and finishes on the Friday afternoon which is handy because I have to fly back that evening and then take the campervan over to Wendover Woods for a 50 mile race that starts early on the Saturday morning. It forms part of the 50 mile “grand slam”that I’m aiming to complete next year in order to raise funds for the Cure Parkinson’s trust (https://puckfarkinsons.uk/latest-fundraising/ ). Hopefully the heat of Barcelona will help me prepare for a warm race.
I became aware of the Cure Parkinson’s trust when I was initially diagnosed because of the BBC programme about a GDNF trial that had concluded the previous year. GDNF stands for Glial Derived Neurotrophic Factor (no, I don’t know what it means either) which is injected directly into the base of the brain using really tricky surgery and targets the bit of the brain that Parkinson’s sufferers are losing. The commitment and bravery shown by the trial participants was truly inspiring. One of the trial participants was Tom Isaacs and he was one of the founders of the trust.
A couple of days ago I received a newsletter about a further trial for GDNF which is potentially in the pipeline subject to a successful fundraising round. My current drugs trial is coming to an end in January 2023 and I am looking for future trials to take part in, which means I have some thinking to do do about whether to volunteer for the next stage and some discussions with the family as well – I’m well aware that this disease isn’t just about me. The news about the trial is here: https://www.parkinsons.org.uk/news/making-progress-towards-potential-new-gdnf-trial, and it might take up to 4 years to get the results.
Update: I showed this post to my wife to check the content (she did mention that there were a few spelling mistakes – so that’s my fault if any remain) and she reminded me that she had asked, when we were watching the original BBC programme and the doctors were drilling into skulls and feeding tubes into brains (snaking around blood vessels) whether I would volunteer for something like that. I had said yes, because I would willingly do anything to help the people who get this shitty disease in future.
Veering slowly, losing identity.
It’s been a while since my last post. That’s due to several reasons: holiday, work, taking my son to Uni, volunteering at races, running a mmidnight marathon, and the main one – parkinson’s.
We drove Buster the campervan down to Switzerland via the tunnel for a week with some friends in the pretty village of Saas Grund. The landscape is stunning, with glaciers on either side of the valley. The camping fees include free bus and cable car tickets so it was easy to get up into the mountains. One highlight was a night spent up in a mountain hut, which is quite luxurious really with thick duvets and a three course meal. The night up high was needed in order to get an early start in the morning for a trip to a nearby peak called the Jegihorn, involving some Via Ferrata.
For those who don’t know what Via Ferrata is, it is scrambling up a mountain clipped onto a steel cable often using metal rungs or pins hammered into the rock. It lets you take routes that are quite exposed. I didn’t take many photos while on the mountain because I didn’t trust myself not to drop my phone and it was a long way down!
Nearing the final climb the path splits. The hard path takes you via a suspension bridge to a hard climb. By this stage I was feeling really tired so we took the slightly easier route to the top, but Nige went out on the bridge with the Puckfarkinsons flag.
We scrambled to the top and had chance to admire the views which were spectacular. The path back down was pretty steep but we had to get a move on as thunder storms were forecast and it’s not ideal to be on top of a mountain holding onto a steel cable with lightning in the air!
After we returned home it’s been a busy couple of months at work, and I’m finding that it takes more and more of my energy to cope with that at the moment. I did take a day off to take my son off to Swansea University which is a really nice campus next door to the Gower peninsula. Luckily he’s got a disabled access room which is at least twice the size of a standard room. Unfortunately it’s on the 7th floor which on moving in day meant some hard work as the lift queues were quite long!
A while ago Budgie and I entered the “Midnight Marathon” on the South Downs for a giggle. Without much training we didn’t have high hopes. Unfortunately Budgie suffered from stomach issues and had to drop out after 12km. I thought I would get to half way and retire but at the checkpoint I felt (relatively) fine so carried on until the finish – which was an unexpected bonus, although it took three cups of tea before I felt vaguely human about 3am (it was the midnight marathon after all!)
The title of this blog entry is based on a shipping forecast t-shirt (I have a thing for t-shirts!) and seems quite apt. The disease is still progressing. My hands (especially the left) get stiff when the meds have worn off or aren’t working so typing is difficult. My voice is getting even softer which means repeating myself more often. The digestion is slower – which impacts on the effectiveness of the meds. I know it’s still early days yet – but I do wonder what the future holds knowing the only direction of travel is downhill.
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).
Welcome!
Welcome to my blog about my journey with Parkinson’s. The original blog was on instagram, which I still post on too.