Citizen Science: Smelling Parkinson’s

The women who identified Parkinson's though sense of smell


The story of Joy Milne, the Scottish woman from Perth, widely featured in the news for identifying and volunteering the observation that Parkinson’s produces a certain smell is a real inspiration to how anybody can positively and significantly contribute to science. Creatifik is championing this as we give credit where it’s due. Diagnostic and pathophysiology possibilities are huge, if indeed, the condition does reliably result in a specific odour; as extrapolation to a test and interpolation back into the body may well be new. However this isn’t the inspiration of this post: it’s how the news story arose is what we think deserves attention.

“Research is to see what everybody else has seen, but think what nobody else has thought’ is a quintessential quotation from Albert Szent-Gyorgyi for scientific discovery. And Joy is a modern embodiment of just this. The short version of the story is Joy’s husband (Les) was diagnosed with Parkinson’s and during this life she noticed how his general smell or musk changed – this was six years before his diagnosis. Les had Parkinson’s for twenty years and when Joy was attending a Parkinson’s UK lecture at Edinburgh University she mentioned her casual observation to Dr Tilo Kunath.

After this Dr Kunath proceeded to investigate if joy could detect the disease sufferers by smell and consequently designed an experiment. He had twelve subjects (six patients and six control) and Joy got eleven out of the twelve correct. She identified one of the control group as having Parkinson’s, and was adamant: the control subject was diagnosed with Parkinson’s eight months later.

Bravo to Joy Milne for being sensitive to her environment enough to have the observation and for the lack of threshold in volunteering it to a medical profession who ran with the idea. We look forward to seeing how this discovery proceeds.

Further Reading:
BBC News Article
Telegraph News Article
Wikipedia page on Citizen Science
Citizen Science Alliance Website

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About the Author:

Founder and Creative Director of Creatifik.

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