Parkinson’s| Joy Milne smelled disease on husband 12 years before diagnosis

Joy Milne. Credit: Joy Milne

Alzheimer’s smells like rye bread, cancer like mushrooms and diabetes like nail polish, says Joy Milne, who sniffed out her husband’s Parkinson’s 12 years before had even received a Parkinson’s diagnosis.

In the Let’s Talk About Care podcast, she explains that her heightened sense of smell means she can smell diseases.

She has since helped scientists develop an early diagnosis test for Parkinson’s that only takes three minutes.

What is hyperosmia?  

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. She reveals what it’s like to smell things other people can’t.

Told to stay quiet and not use super smell

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.

Her grandmother told her: “Look you can’t do this. 

“She explained about her heightened 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.”

What did her husband Les smell like when she first met him?  

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.” 

When did Joy first notice her husband’s smell had changed?    

But after they married and had children, his smell began to change to a “dank” smell that was “not pleasant at all”.

When did Joy Milne realise she was smelling Parkinson’s? 

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.

What is Parkinson’s disease?

Parkinson’s is a neurological, progressive disease which gets worse over time and causes problems in the brain. It can affect a person’s movement and thinking processes, as well as creating other physical and psychological symptoms. 

People with the condition do not have enough of the chemical dopamine in their brain because some of the nerve cells that make it have died.

What are the Parkinson’s symptoms?

The symptoms of Parkinson’s can include: 

• Tremor (involuntary shaking of parts of the body)
• Slowness of movement
• Muscle stiffness (rigidity)
• Other common symptoms can include depression, sleeping problems and pain. People with Parkinson’s can also experience balance issues and a loss of sense of smell (anosmia).

How common is Parkinson’s? 

Around 145,000 people are living with the condition in the UK. And it’s the fastest growing neurological condition in the world according to Parkinson’s UK.

What causes Parkinson’s?  

Researchers think the causes of the condition are a combination of age, genetic and environmental factors that cause the dopamine-producing nerve cells to die.

What effect did Parkinson’s have on Les’ character?   

Joy with her husband Les Milne. Credit: Joy Milne

She says of her husband’s Parkinson’s, what it was like living with 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 dreams. Les became the opposite.”

What’s it like to care for someone with Parkinson’s? 

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.”

How old was Les Milne when he died of Parkinson’s?   

Les died of Parkinson’s at the age of 45. 

Before Les passed away, he made Joy promise to work with scientists to ensure her smelling abilities could help with earlier diagnosis of Parkinson’s.

How did Joy Milne help scientists diagnose Parkinson’s?   

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. 

Joy is then able to sniff out the compounds that are linked to the condition.

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.

Is Joy’s sense of smell more powerful than a trained animal?  

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.

‘I did score higher than the rat’ 

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).

What can people do to help advance Parkinson’s research?  

Joy is an honorary lecturer at University of Manchester. 
She 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.

What would Les think about her efforts to promote Parkinson’s research?  

“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.”

To find out more about the condition and the symptoms of Parkinson’s click here 

You can listen to Joy Milne tell her story in Episode 30 of the Let’s Talk About Care podcast