Joy Milne first smelled the disease on her late husband, Les, 17 years before he was diagnosed with it
Former nurse Joy Milne can smell Parkinson's disease. Photo: Ken McKay/ITV/Shutterstock
+Joy Milne can smell Parkinson's disease and is working with University of Manchester researcher Perdita Barran on developing a swab test for early detection
+Milne smelled the disease on her late husband, Les, 17 years before he was diagnosed with it
+Milne's and Barran's research is funded by the Michael J. Fox Foundation for Parkinson's Research
A woman who can smell Parkinson’s disease is using her hyperosmia — an enhanced sense of smell — to help diagnose the degenerative disease early as part of a study funded by the Michael J. Fox Foundation.
Joy Milne, a former nurse, claims that illnesses all smelled different to her. “I would know if someone’s diabetes was going off," she told UK-based newspaper The Telegraph.
"I could tell if someone was struggling post-operatively. The big one was walking into a Nightingale ward with 18 beds on it and smelling tuberculosis," Milne, now 75, said. "It’s not musky like Parkinson’s. It’s more of an oily biscuit smell.”
Joy Milne can smell Parkinson's disease and is working on a test to detect it early. Ken Photo: McKay/ITV/Shutterstock
Her late husband, Les, was 28 when Milne noticed he smelled different. Seventeen years later, when he was 45, he was diagnosed with Parkinson’s disease, a degenerative nervous system disorder that impacts movement. As the Mayo Clinic explains, there is no cure, but surgery and treatments can help symptoms.
Milne accompanied her husband — who died in 2015 — to a support group and caught a whiff of the inside of someone’s coat. That’s when, she told the outlet, it “hit me.” She could smell Parkinson’s disease.
The couple reached out to professionals to find out how Milne’s ability could be put to beneficial use. In 2013, her skills were put to the test with Professor Perdita Barran. She was given T-shirts that had been worn by someone with Parkinson’s disease, along with shirts that were worn by people who weren’t ill.
Milne guessed every single shirt correctly, except for one — and that T-shirt belonged to someone who was later diagnosed with Parkinson’s disease. Milne and Barran, now at the UK's University of Manchester, are working on a test to diagnose Parkinson's early — and Barran says she's "very close."
“The initial aim was to find out what Joy was smelling. It was a problem I just had to pick up because it was so extraordinary,” Barran told The Telegraph. They looked to the oily skin secretion sebum, and are currently researching a swab test with The Michael J. Fox Foundation for Parkinson's Research.
Michael J. Fox in Nashville in April 2023. Photo: Jason Kempin/Getty
As the foundation — founded by Fox, who was 29 when he announced his diagnosis in 1991, explains, “We plan to determine if those with PD have a distinct sebum profile that is linked with a distinct odor profile that can be detected and identified/discriminated using proposed human/canine/analytical platforms.” The samples will be collected from the forehead and upper back.
One in four people with Parkinson's disease are initially misdiagnosed, The Washington Post reports.
“What if the women who have Parkinson's who are misdiagnosed for many years could be diagnosed with a simple test?” Milne asked in her 2023 TEDTalk. “What if the young onset Parkinson's disease … could be diagnosed earlier instead of having their shoulder or their leg operated on because of the severe pain they're suffering from?”
“What a difference this would make.”
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