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When Life Gives You Parkinson’s podcast: The Smell of Parkinson’s

Dr. Joy Milne (left) presenting the Tom Isaacs Award to Dr Tilo Kunath.
Dr. Joy Milne (left) presenting the Tom Isaacs Award to Dr Tilo Kunath. The Cure Parkinson's Trust

 

On this episode of When Life Gives You Parkinson’s, we talk about Parkinson’s and smell.

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.

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Six months after that encounter, a colleague told Tilo that many cancers have smells, which made him think Joy may be 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 that allows them to test anyone’s sebum at any time and predict, with 90 per cent 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 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?”

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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.

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

We invite you to add your voice to the show and leave a message for us here.

Follow me, Larry Gifford

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow co-host and producer Niki Reitmayer

Twitter: @Niki_Reitmayer

 Special thanks to…

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

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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

For more information on our presenting partner, Parkinson Canada, head to http://www.parkinson.ca/, call the toll-free hotline at 1-800-565-3000 or follow Parkinson Canada on Twitter @ParkinsonCanada.

Thanks to our content and promotional partners as well:

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 around young-onset Parkinson’s disease

We LOVE that you are loving the “When Life Gives You Parkinson’s” podcast! If you haven’t subscribed yet — what are you waiting for? 

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