Ten years on from the death of her beloved husband Les from Parkinson’s disease, retired Dundee nurse Joy Milne still remembers the moment she realised something was different.
Not in what he said. Not in how he moved. But how he smelled.
“It was like a deep, musty, fatty smell,” she says quietly.
“At first, I thought he just wasn’t showering. But it wasn’t that. It was something else.”
That “something else” would change the course of her life – and potentially the fate of millions living with Parkinson’s disease.
Joy Milne, now 75 and living in Perth, is the “woman who can smell Parkinson’s”.
Her poignant and pioneering story is one of grief turned into groundbreaking science.
Ten years after Les passed away, her remarkable ability is now being used to help develop early diagnostic tests – not just for Parkinson’s, but for diseases like tuberculosis.
But for Joy, it didn’t begin in a lab or on television. It began in love.
When did Joy Milne realise she could ‘smell Parkinson’s’ – and why?
Joy met Les at the age of 16 when they were pupils at Dundee’s Harris Academy.
He was six months older, a year ahead in school, and destined for a brilliant medical career.
She was sharp, curious, and already knowingly equipped with rare neurological conditions called hyperosmia and synesthesia.
Synesthesia is when your brain routes sensory information through multiple unrelated senses, causing you to experience more than one sense simultaneously.
But it was through hereditary hyperosmia – an overwhelming sensitivity to smells – that enabled her to “smell” what others can’t perceive, even if she didn’t know what the smells were at that time.
Les’ mother was diagnosed with having manic depression and locked up in Liff Hospital, frequently having ECT. However, it turned out she actually had Parkinson’s – a movement disorder of the nervous system that worsens over time.
With Joy set to travel away from Dundee to study, and with Les saying he couldn’t manage his Dundee University medical studies without her, Joy gave up her university place. She stayed close, and trained as a nurse at Maryfield Hospital instead.
They married in 1973, just as Les graduated from Dundee University as a newly qualified doctor.
He would go on to become a consultant anaesthetist – the first in his year to do so, by the age of 30.
The first time Joy noticed an ‘odd smell’
It was in their late 20s, while living in Liverpool, that Joy first detected an odd smell on Les.
“I knew I had this nose. I always had it,” she says.
“Even at six years old I could smell things other people couldn’t. But I’d been warned – my grandmother told me, ‘Don’t tell anyone. They’ll think you’re a witch.’”
The scent Joy first noticed on Les wasn’t the distinct Parkinson’s smell she would later come to recognise – it was something earlier.
“It was sweeter, almost biscuity, with a hint of an earthy tone,” she recalls.
“That was the first sign. Years later, I realised it was the smell we now understand as a potential early indicator of Parkinson’s.”
Les wasn’t diagnosed until he was 44. By then, the disease had firmly taken hold – and the scent Joy detected had deepened into what she now describes as a “musty, fatty sort of smell.”
The years that followed were difficult.
“He changed. Became erratic,” she says. “And later, the dementia and psychosis came. But he stayed at home. Right to the end.”
Joy promised her dying husband that she would continue research
In June 2015, Les died at the age of 65 – around 20 years after his diagnosis.
The night before, he made Joy promise she would keep going with the research.
“He said, ‘You will do this’,” she remembers. “And I have. I’ve kept going.”
In the years since Les’s death, Joy has turned her rare gift into a powerful scientific tool.
In the wake of an accidental discovery – at a Parkinson’s support meeting in Perth where she realised others had Les’s smell – she began working with researchers to test her abilities.
One of the earliest tests was simple but astonishing: a series of T-shirts worn by patients with and without Parkinson’s. Joy smelled the back of the neck of each one.
She got nearly every single one right – including identifying a case before any symptoms had developed.
That was just the beginning. In the decade since, scientists have identified the volatile molecules Joy can detect – now down to around 50 key compounds.
This discovery has spurred the development of a biomarker, a crucial step in creating a non-invasive diagnostic test for Parkinson’s, something still missing in modern medicine.
Joy Milne is working with researchers worldwide
Joy’s work has taken her across the globe – from labs in Manchester and California to tuberculosis testing centres in Tanzania, where she worked with APOPO, the NGO famous for training rats to sniff out disease and landmines.
“I took five minutes smelling urine samples from patients with TB,” Joy says.
“I got 87% right. The scientists couldn’t believe it.”
Joy’s hometown of Dundee is also at the cutting edge of the very science her gift has helped inspire.
Dundee University’s MRC Protein Phosphorylation and Ubiquitylation Unit is now a global leader in Parkinson’s genetic research.
“They’ve had £14 million from the Michael J. Fox Foundation to study LRRK2, one of the main genes linked to Parkinson’s,” she says proudly.
Joy is on the board of Transforming Parkinson’s Care in Africa (TraPCAf), a six-country programme tackling the disease head-on with genetic testing, early detection, and education.
Joy has also become a fierce advocate for women with Parkinson’s, many of whom were historically misdiagnosed as having mental health issues.
“Les’s mum was misdiagnosed. So were so many women,” she says.
“We started a group with the Cure Parkinson’s Trust, and the Michael J. Fox Foundation supported a global 4,000-question study to better understand the female experience.”
But even with all the global attention, Joy still lives a humble life in Perth, quietly continuing her work.
Are Joy’s abilities a blessing or a curse?
Joy admits her ability remains a double-edged sword.
While she’s not involved in research for cancer, she knows that’s something she can also smell.
“I can walk past someone in the supermarket and smell cancer,” she admits.
“A woman stretched over me in M&S recently and I thought, ‘I hope to hell they’re still treating her because it’s not gone.’ But I can’t say anything. I’ve signed a disclosure. Legally, I can’t.”
Asked if her gift is a blessing or a curse, she pauses.
“Both,” she says. “Dogs can smell disease. So can rats. But they can’t speak. I can.”
Joy shares a story related to an early round of Parkinson’s testing, not long after Les’ passing. She had just come home from the lab.
“I didn’t think,” she says. “I still had the smell (of Parkinson’s) on me. Our dog went berserk. She ran all over the house – upstairs, downstairs, into the garden – looking for Les. She thought he was home.”
Joy sat at the foot of the stairs and cried.
“She couldn’t speak. But I could. That’s the difference. And that’s why I’ve kept going.”
Conversation