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.
Exercise is good for you
Every day there seems to be an article about exercise and the effect on Parkinson’s. The overwhelming concensus is that it boosts the brain through lots of ways including increased mitochondria and more efficient dopamine usage.
It also counters one of the main non-motor symptoms – fatigue. I’ve noticed that I really struggle to “get going” these days and thinking back it’s been a factor for a while. I originally ascribed it to my trolley leg, and thought that I was sulking about not being able to run (yeah, sulking. At my age!). Studies suggest that exercise slows the progression of the disease. When my symptoms first started to show I was, even by most standards, fairly fit. And this makes me wonder whether I would have suffered from some of other symptoms of Parkinson’s earlier, which would have put me on a different pathway, and probably given me additional challenges which, hopefully, the exercise I do now will push further into the future.
Exercise is good for you. I know it’s good for me.
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#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.
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