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.
#puckfarkinsons on tour
While I was still processing my diagnosis (and I think I still am) I decided to get involved with as much research as possible. I’ve already been to Queen’s Square in London for some scans and cognitive tests which form part of a long term study into the development of the disease. Today it’s a visit to King’s College Hospital to take part in a study about sleep problems and Parkinson’s.
One of the many symptoms of Parkinson’s is sleep disorder. It’s a bit of a double whammy – Parkinson’s interferes with sleep, and sleep is needed to help the brain recover from daytime activity. Not good with a neurodegenerative disease.
So I’ve had more blood tests and am now wearing an activity tracker for 2 weeks as well as having to fill in a sleep diary. And this will be repeated in 12 months’ time.
It takes years for research to get through the system so I hope that whatever I do can help those who get hit with this disease in future. (The bonus today is that I can visit my eldest daughter as she’s studying just a few minutes away.) Thanks for reading, and please share the fundraising link in my bio.
#parkinsonssucks#cureparkinsonstrust
#parkinsons
#parkinsonsawareness
#parkinsonsdisease
Part 2. D is for Dystonia
No, I hadn’t heard of it either.
When I started running again, my left leg would be normal for a while and then do its own thing.
A friend of mine described it as though I was running with cerebral palsy on one side. Little did they know how close they were to the cause. I called it “trolley leg”. Because of my knee, everyone (including me) went to town on my back, knee, leg, nerves, ankle – anything related to my leg. I had scans on everything. And all the results showed that I was mechanically sound. But that took 18 months of frustration, false hope, staggering around with a locked leg and generally being a pain in the neck to my family.
Eventually I saw a neurologist at the National Neurological hospital for some nerve tests. After hearing my symptoms he told me that he thought I had Exercise Induced Dystonia. So the problem was up top rather than the leg. (Mechanically sound, mentally not so much)
Dystonia can occur independently from Parkinson’s, and it had already been suggested to me that it could be the problem. So I was then looking at brain training and plasticity courses. It wouldn’t solve the problem of my leg but would help me cope. By now the leg was spasming after walking for a few minutes and running was out of the question.
Shortly after this, I was also aware that my sleep was getting a lot more disturbed, and consequently my concentration was failing. My handwriting was getting worse – it has always been small, but now the pen would travel in fits and starts across the page. And I was suffering worse with constipation (I’d had it for years but luckily I love liquorice and fig rolls). The GP listened to my symptoms and referred me to the local hospital. And on 10th January 2019 I was given the diagnosis that changed my life.
I had Parkinson’s.
#parkinsons
#parkinsonsuk
#parkinsonsawareness
#parkinsonsdisease
#parkinsonssucks
#puckfarkinsons
#cureparkinsonstrust
Part 1. K is for knee
(Apologies for the bloody content). Today’s blog is in two parts and brought to you by the letters K and D.
Part 1.
K is for knee. My left knee. On 12th October 2016 I fell on it while running. It was my own stupid fault for not looking where I was going (my watch beeped at me – doh!). I still finished my run, after all, why not? I was feeling pretty invincible at the time, having just finished my first 50 mile race and was signed up for more. The knee really, really hurt. Even over 2 years later I can’t sit with it bent for long periods without it complaining after a while.
When, after a couple of weeks rest, I started running again something wasn’t right with my leg (and not just because it was my left leg 🤪). It was pain free, but not working properly. However the knee proved to be a bit of a distraction while trying to find out what the problem was. (More to follow in part 2). (And apologies to my friends who’ve heard this before but I’m starting from the beginning, which according to those who know, is a very good place to start)