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.
One singular sensation
The dance show was on Saturday evening. I spent the daytime doing the dress rehearsal and thinking “ohshitohshitohshitohshit”. I’ve been on stage with the dance school several times before but that was the “Dads Dance” which was always played for laughs and after some liquid muscle relaxant. Making a fool of yourself by cocking up was obligatory – our Riverdance was a sight to behold as we wore anything from flippers to hikeboots. Due to lack of available dads there was no band of motley fools this year.
This time it was serious and there were 10 other ladies on stage who were much better at tap dancing than me and I didn’t want to let them down. And I certainly didn’t want to disappoint Claire our dance teacher who has to put up with our special talents each week when we ask “can you put that on a whatsapp video so we can practice?” (which translates to an emergency 5 minute shuffle round the kitchen while getting dinner ready before the weekly dance lesson).
The dress rehearsal was interesting, to put it mildly. Organised chaos seemed to be the order of the day and giving the toddlers umbrellas had been a discussion point in the run up to the show as to how many injuries could occur. This paled in comparison to the dozen or so basketballs being bounced in random directions (not intentionally) during the High School Musical numbers. Some even remained on the stage. Still, it was too late to back out now, and hopefully it would be alright on the night.
The show itself passed off with only little niggles. There were a lot of frantic costume changes which left some pauses but otherwise it went well. One toddler dissolved into tears when her glass came unstuck from her tray during “Be Our Guest” which got the whole audience going, and all the basketballs stayed on the stage. Our dance passed off with only minor brain fades which was a miracle considering the disrupted rehearsal schedule and that we were dancing with hats too. It’s hard enough getting the left foot to do something different to the right foot let alone get the arms in on the act too.
blog title
I don’t know how Claire stays sane after having to organise the show (including all the routines).
As a surprise she gave each of us a medal this year – it will hang proudly alongside those I’ve got from all my running.
This Friday it is the Scout District Annual General Meeting. It’s the end of an era as our district is being merged so “Waterlooville District” will cease to be, and “Southdowns District” will take its place. Luckily trying to organise that lot will not be my problem as I’m taking a back seat at the moment. Still doesn’t mean that I don’t have to sew my badges on my uniform though…
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.
Small Steps
The first (and really crucial) step for next year’s fundraiser has been completed and I’ve entered the South Downs Way 50 miler. Only another three entries to go. Oh, and running them of course (lots of small steps). 50 miles, 4 times. It’s gradually dawning on me that I must be slightly weird – although I prefer “eccentric”. To quote Bernard Woolley from “Yes Minister”: “That’s one of those irregular verbs isn’t it. I have an independent mind, you are eccentric, he is round the twist”. I’d better start training soon (and the Strava updates will be linked to the fundraising page which can be found in my bio).
After a lifetime of using my calculator left handed, I’ve got to learn to be dextrous (rather than sinister) otherwise I make too many errors – not good for an accountant. No comments about the age of the calculator thanks, although it does give me a good giggle when people borrow it and stare blankly at the keys trying to work out what to press.
The room where it happens
Trip 7 (out of 10) to the UCLH research facility, which by a strange quirk of fate is two floors above the ISEH who investigated my “trolley leg” and came to the conclusion that it was neurological. So I know the building well!
London is a lot busier now – which also means more building work, more noise and more rubbish. I miss the peace of the last two years.
Three more visits left until my participation in this trial ends but as they are still recruiting guinea pigs it will be a while before the outcome is known – at least two years as that is the length of the trial, let alone collating the results. Standard for medical research, unfortunately.
One important step has been taken towards next year’s fundraising epic as I’ve entered the South Downs Way 50. This will be the first of four 50 milers and takes place on 8th April 2023. I’d better start training for it… (Fundraising link is in the main menu).
Unfinished business
It’s World Parkinson’s Day on 11th April. Yay.
Sorry for not putting any candles on the cake. As part of raising awareness the PD Avengers (and others) are sparking a conversation based on the sparks in cells in our brains. Some brains have fewer sparks than others, unfortunately.
This brings me back to the unfinished business. I’m raising awareness by completing the 50 mile slam (four races) that I didn’t finish in 2017 due to the undiagnosed disease that is taking away control of my body. And it is progressing. I will no longer be able to do the distances again that I’ve done, and it is a race (haha) between the disease and November 2023 when the last race in the series takes part. Unfortunately the last race is also the hilliest! The fundraising link is in the bio as Cure Parkinsons are searching for a cure (also unfinished business as there isn’t one, yet).
So thanks for any support whatsoever, whether donating to Cure Parkinsons or sharing my blog. Every bit helps.
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.