Her husband was in his early 30s when she first smelled the odd scent on him.
“A very heavy, oily, musky smell,” Joy Milne, a 67-year-old Scottish woman, told the CBC. “It’s not like the musk of a plant — it is definitely an animal musk.”
Milne, a nurse, told her husband, a doctor, that it smelled like he either wasn’t showering enough or wasn’t brushing his teeth. Her husband, Les, was annoyed by the comments, so eventually Milne stopped mentioning it, she told the BBC.
A decade later, Milne’s husband was diagnosed with Parkinson’s, she told the BBC. It’s a disease with no cure that frequently begins with just a tremor in one hand, but then leads to shaking, rigidity, difficulty with walking and balance and a variety of other motor and cognitive challenges.
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But Milne didn’t realize the smell she’d sniffed out years before had anything do with her husband’s Parkinson’s until she went to a support group meeting with her husband, she told the CBC. When she was there, Milne realized it wasn’t just her husband who smelled of that peculiar musk — it was all of the Parkinson’s patients.
“We got home and I sat him down,” Milne told the CBC. “I said to him, ‘Those other people smelled the same as you in that room.’ And he just looked at me and said, ‘What are you talking about?’ And I said, ‘The other people who had Parkinson's smelled exactly the same as you.’ ”
And as the disease progressed, Milne said it confirmed her suspicions.
“As the Parkinson’s got worse, the smell got worse,” Milne told the BBC.
Eventually, Milne reached out to British researchers about her ability, and they were able to confirm that she could smell the difference between those with Parkinson’s and those without just from smelling skin swabs, according to The Telegraph.
Milne was even able to smell that someone who didn’t realize they had Parkinson’s had the disease, The Telegraph reports.
“I insisted the man had Parkinson's and [the researcher] said, ‘No, no he's in the control group,’” Milne told the CBC. But just months later, the man called the researcher to say he’d been diagnosed with the disease.
And now, a team of researchers at the University of Manchester has identified 10 molecules that occur in high concentration on the skin of those with Parkinson’s — and researchers suspect those molecules may be what Milne has been smelling, The Telegraph reports.
“These results could lead to the development of a non-invasive diagnostic test that may have the ability to diagnose early Parkinson’s — possibly even before physical symptoms occur,” Perdita Barran, chair of Mass Spectrometry in the School of Chemistry at the University of Manchester, said in a statement when she began the research.
Barran told the BBC the researchers used a mass spectrometer, which isolates each particular molecule by weight, to pinpoint the 10 molecules.
“It is very humbling as a mere measurement scientist to have this ability to help find some signature molecules to diagnose Parkinson’s,” Barran told the BBC. “It wouldn’t have happened without Joy.”
Establishing an earlier test for Parkinson’s based on smell, as researchers now aim to do, would make it possible for doctors to tackle the disease’s symptoms quicker.
That, researchers say, could some day lead to drugs that stop Parkinson’s altogether.
“[I]t would also make it a lot easier to identify people to test drugs that may have the potential to slow, or even stop Parkinson’s, something no current drug can achieve,” said Arthur Roach, director of research at Parkinson’s UK, which funded the University of Manchester research.
Milne’s husband died in 2015 at age 65, according to the Telegraph. He supported her efforts to unlock the secrets of the disease until the end, Milne said.
“He knew he was dying,” Milne told the CBC. “He made me promise that I would do it. He said, ‘Don't ... let them defeat you. Keep going.’ ”