Alzheimer's smells like rye bread, says woman who smelled husband's Parkinson's

Alzheimer’s smells like rye bread, cancer like mushrooms and diabetes like nail polish, says Joy Milne who explains in the Let’s Talk About Care podcast that her heightened sense of smell meant she could sniff out her husband’s Parkinson’s 12 years before his diagnosis.

Joy Milne has hyperosmia, a rare condition inherited from her grandmother, which means she has an overwhelming sensitivity to smells and can smell human diseases.

The 72-year-old woman from Perth, Scotland is a retired nurse who speaks candidly as a guest on the podcast about what it's like to smell things other people can’t.

When she was a little girl, she recalls: “I said this little boy had 'wet his pants'” a comment that led to her grandmother being called to her school.

Told to stay quiet and not use super smell

Her grandmother told her: “Look you can’t do this. She explained about the sense of smell and not everybody has it and why I should be very careful. So, from the age of six, I knew I shouldn’t be using it.”

When she was 16, she met her husband (also 16) at a party. She describes him as being “fun” and “thoughtful” and was attracted by his “wonderful male musk smell.” But after they married and had children, his smell began to change to a “dank” smell that was “not pleasant at all”.

But Joy only attributed his new smell to Parkinson’s when he was diagnosed with the disease 12 years later. She realised she had been smelling Parkinson’s for more than a decade when she found herself standing in a room with other people who had Parkinson’s and all smelled like Les.

Joy says her husband Les, a consultant anaesthetist, was “stunned” by his diagnosis and also amazed that Joy had smelled it on him many years before.

Les died of Parkinson’s at the aged of 45. But before he passed away, he made her promise to work with scientists to ensure her smelling abilities could help with earlier diagnosis of Parkinson’s.

'That wasn't my Les'

Joy kept her promise and has helped Dr Perdita Barron at Manchester University develop a simple 3-minute swab test that can identify Parkinson’s. After swabbing sebum from the back of a person’s neck (the part of the body where she can smell Parkinson’s most), volatile compounds identified as Parkinson’s are analysed in a mass spectrometer machine and Joy is able to sniff out the compounds that are linked to Parkinson’s.

She says there are four different levels of intensity of the disease and a T-shirt test saw her correctly identify T-shirts worn by 12 people diagnosed with Parkinson’s. She also surprised scientists by identifying a thirteenth person as having Parkinson’s. That individual was part of the control group but eight months later he was diagnosed with Parkinson’s.

She says of her husband’s Parkinson’s and its effect on their children: “Their father had changed quite a bit by the time they realised. That change of character, the violent dream. Les became the opposite.

Joy repeats the words of another when she says “Caring for Parkinson’s is not for the light-hearted. It is quite a difficult job.”

“He understood at the very end. One day he turned around, put me in his arms and said 'I have really made it very difficult for you. I’m really sorry'.

“But that was the disease, that wasn’t my Les. There are two different people I have lived with. I’ve lived with my Les and I’ve lived with someone with Parkinson’s.”

'I did score higher than the rat' says PD Avenger

After helping develop a swab test for Parkinson’s to enable earlier diagnosis, Joy did not stop there.

Her heightened smelling sense took her to Tanzania - the base of Apopo’s Training and Innovation headquarters in Tanzania. Apopo trains scent detection animals including ‘HeroRATs’ and dogs to rid the world of tuberculosis (TB) as well as landmines.

10 million people contract TB every year, three million go undiagnosed, and 1.8 million die from the disease.

Joy’s super sense made her out-sniff a trained TB detection rat – the African giant pouched rat (Cricetomys ansorgei). She says: “I did score higher than the rat”. After beating the rat, Joy is now working on a simple test for early diagnosis of TB (tuberculosis).

To promote research into Parkinson's, the 72-year-old, who is an honorary lecturer at University of Manchester, urges people to look up PD Avengers. She says: “I am part of the PD Avengers. We are a body of people who are advancing the work in Parkinson’s.

“On his death bed he made me promise that I would do this", Joy adds. "To the extent that I am doing now we never, ever thought about. To get to this stage, he would be so pleased, he really would.”