When Joy was 16-years old, she fell in love with Leslie. Back then, he smelled good. “He had a wonderful male musk smell,” she says. Dr. and Mrs. Leslie and Joy Milne were later married. Les became a consultant anesthetist and she was a nurse practitioner.

Sixteen years later, his body odor changed – for the worse. He smelled off, overly musky and unpleasant. Joy even nudged him to wash more. Twelve years after that, he was diagnosed with Parkinson’s disease. At their first support group meeting, Joy realized the other people with PD smelled just like Les.

Bravely, Joy asked researcher Tilo Kunath why no one had researched the smell of Parkinson’s. Tilo was shocked. He had never heard anyone talk about an odor of the disease. Neither had anyone else.

Six months after that encounter, a colleague told Tilo that many cancers have smells, which made him think Joy maybe on to something.

Tilo teamed up with Perdita Barran, a professor of mass spectrometry at the University of Manchester, and started to test Joy’s super smeller. They discovered she was smelling sebum, an oily secretion on everyone’s skin that is over-produced in people with Parkinson’s disease. Next, they focused on the molecules within the sebum. “We found, if we compared the samples from people with Parkinson’s with the people without, there were significant differences.” Barren says they found 17 compounds that were different, “Of those, four were significantly different and they always varied in the same way.” Barren and Kunath used that information to create a model which allows them to test anyone’s sebum at any time and predict, with 90% accuracy, if that person has Parkinson’s.

The novelty of “The woman who smells Parkinson’s” initially brought ridicule and doubt from others in the scientific community, but as more and more research is being conducted, supporters are coming out of the closet. Joy feels some vindication, but knows there’s more work to be done on convincing the medical community that diseases have distinct odors. “How do elephants in a tribe know an elephant is ill and they protect it? How does a wolf know who is in the pack and is ill? Animals smell when they are ill. Sharks do as well. They have a super sense of smell. We are sentient beings. So why are we not accepting of it?”

There currently are no biological tests or measurable indicators for Parkinson’s disease. Diagnosis of PD is a subjective call by a neurologist based on medical history, symptoms, a physical examination and neurological tests. It is imperfect at best. The research around the smell of Parkinson’s is an exciting and promising approach to finding that elusive biomarker. Additionally, testing sebum levels is quick, easy, cheap and painless making it a great option for monitoring disease progression and medication effectiveness, especially for people in rural areas who rarely see their neurologist.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

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Thank you to…

Joy Milne, Super Smeller. On twitter she’s https://twitter.com/stumpw0rk50

Tilo Kunath, reader in regenerative Neurobiology, Centre for Regenerative Medicine. Follow Tilo’s lab on Twitter https://twitter.com/KunathLab. Follow the Centre for Regenerative Medicine on twitter https://twitter.com/crm_edinburgh  

Perdita Barran, a professor of mass spectrometry at the University of Manchester. Watch her TedX Palo Alto talk here.  Follow her on twitter https://twitter.com/perditab

APOPO, discover the miracle of hero rats here: https://www.apopo.org/en

Watch Founder of APOPO, Bart Weetjens give his Ted Talk here https://www.ted.com/talks/bart_weetjens_how_i_taught_rats_to_sniff_out_land_mines?language=en

Rebecca Gifford, my amazing wife.

Henry Gifford, Captain Awesome (Our son).

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter

Parkinson Canada           @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

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