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.
Lab rat diary week 48
48 weeks already! It means I’m halfway through and the end is in sight.
I’m now stuck (literally) with a motion tracker on the base of my spine for a week together a mobile phone for some voice and movement tests three times a day.
All to see if repurposed diabetes medicine will help slow the progression.
As the end of the trial gets nearer I’ll be digging through the upcoming research to see if there’s anything that I fit (sometimes the entry requirements are for those with more severe symptoms – give it time and I’ll qualify 🤪🤣) and that I can do without impacting too heavily on the family.
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
Happy 3rd birthday to my Parkinson’s
Well, to be strictly true, it’s the diagnosis that’s now 3 years old as Puck has been with me for a while longer than that.
There’s no cure.
In the midst of a pandemic I know there are a lot of worse things that can happen, but sometimes having a chronic disease can be a bit shit. Someone asked me a couple of weeks ago if I was getting better. I don’t think they realised that Parkinson’s is a one way ticket, and it’s definitely downhill.
Still, I’ve managed to keep one New Year’s resolution which is to get down the gym more than just once a week for my PT session. Luckily we’re only one week into the year 😁. My bad back stems from my left shoulder stiffness, which is caused by my Parkinson’s. I need to exercise my arms more often to keep my back from locking up completely (which also stops me from being able to walk).
Tonight is the monthly “Parkies at the Pub” meeting. Should be fun watching us throw food around, but I think I’ll avoid anything with peas.
#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?)
Channeling my inner Fred Astaire
(Although he may be buried very deep)
Dancing (like exercise) is good for Parkinson’s – although the studies tend to concentrate on the elderly.
My kids have danced for years and I’ve always fancied having a go but put it off. After being diagnosed I decided to bite the bullet and start tap lessons. This is part of a routine for a show….eeek!
The smell of Parkinson’s
One of the more well known but “hidden” symptoms of Parkinson’s is the loss of the sense of smell. Why oh why couldn’t I “benefit” from this when the kids were in nappies?
However, that’s not the subject of this blog. Instead I’m writing about Joy Milne. She’d noticed a change in the smell of Les, her husband, when he was 33 (and not in a nice way). Les diagnosed with Parkinson’s about 12 years later. When Joy accompanied Les to a Parkinson’s support group meeting she noticed that everyone with PD had the same odour. It was at a presentation by neurobiologist Tiki Kunath that Joy asked “what about the smell”? After a while (due to a variety of reasons including disbelief) an experiment was set up. Rather than sniff people, t-shirts were used. If Joy had seen the test subjects then she would have possibly seen those with visible symptoms. Even if blindfolded it might have been possible to detect anyone with a tremor. So 6 people with Parkinson’s and 6 people without (the controls) wore t-shirts.
You see, it is sebum that contained the smell and this oily substance was produced across the shoulders and back of the neck and was absorbed by the fabric.
The t-shirts were then cut in half and given to Joy to smell. So she had 24 bits of t-shirt to test.
She correctly identified all 6 Parkinson’s sufferers.
She correctly identified 5 of the controls.
This is the hair raising bit:
8 months later the incorrect control that had been flagged by Joy was diagnosed with PD.
Joy is a “super smeller” and thanks to her, researchers have identified 4 compounds that could help identify Parkinson’s before symptoms arise, and from there potentially develop treatments to delay the onset of the loss of motor functions.
So if you notice a change in the way someone smells, don’t just get them to wear more deodorant.