June 5, 2019 4:15 pm

When Life Gives You Parkinson’s podcast: Meet the woman who can smell Parkinson’s

The World Parkinson's Congress is taking place in Kyoto, Japan. On this episode of 'When Life Gives You Parkinson's,' we'll feature (from left to right) geneticist Matt Farrer of UBC, Joy Milne, Matt Eagles and podcast host Larry Gifford.

Larry Gifford
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I am in Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson’s event that is held every three years, and it opens its doors to all members of the Parkinson’s community, from neurologists and researchers to those living with the disease.  

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In this special on-location episode of When Life Gives You Parkinson’s, Joy Milne and Allison Williams talk about how Milne’s ability to smell different levels of Parkinson’s has empowered Williams and improved her Parkinson’s symptoms.

Milne, of Perth, Scotland, fell in love with Les Milne when they were 16 years old. They married and had three kids. He was a doctor, and she was a nurse. They lived a good life. But sometime in their 30s, Milne noticed that her husband started to smell different, more musky and unpleasant. She didn’t realize at the time that she was smelling Parkinson’s.

Twelve years later, her husband was diagnosed at the age of 45. Over the years, while attending support groups and other functions, she realized other people with Parkinson’s had a scent like her husband’s. Nearly two decades on, she began to ask why no one was using the smell of Parkinson’s as a biomarker.

The answer? No one else seemed to have noticed.

READ MORE: When Life Gives You Parkinson’s — Becoming ‘Disease Guy,’ and other things you can’t put on your LinkedIn

After testing her over and over again, science won out: it turns out Milne can smell the overproduction of sebum. Her work is detailed at the World Parkinson Congress.

Milne also joins 50-year-old Matt Eagles, who has had Parkinson’s since age 7, and Jonny Acheson, who is three years past diagnosis, to chat about what they’ve learned at Day 2 of the WPC. From patient advocacy to the importance of care partners, important discussions around the compulsive behaviour side effects of certain drugs and the absolute shock one gets when he first uses a Japanese toilet.

READ MORE: When Life Gives You Parkinson’s podcast — We’re dying here. It’s time to change the narrative

Geneticist Matt Farrer of the University of British Columbia and Yoshio Tsuboi, M.D., PhD, of Fukuoka University, provide an interesting peek inside the complicated world of genetic research. They share what they believe is the next most promising result they have for treating Parkinson’s based on genetics.

Thank you to:

Joy Milne, Allison Williams, Matt Eagles of ParkyLife, Jonny Acheson, Matt Farrer and Dr. Yoshio Tsuboi

Contact me, Larry Gifford:

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

When Life Gives You Parkinson’s was selected as one of Apple’s best podcasts of 2018

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