Right now, there’s no simple test for diagnosing Parkinson’s disease early on
A woman with an incredibly rare ability that lets her 'smell' Parkinson’s disease long before symptoms appear is now working with scientists to help improve early diagnosis of the condition.
Parkinson’s is a neurological disorder where certain areas of the brain gradually become damaged over time. It leads to symptoms like tremors in parts of the body that a person can’t control, slower physical movement, and muscles that feel stiff or hard to move.
At the moment, there’s no official medical test that can confirm Parkinson’s. Doctors have to rely on looking at the patient’s symptoms, understanding their medical history, and performing a neurological exam to make a diagnosis.
Joy Milne, who lives in Scotland, had been in a relationship with her husband, Les, ever since she was just 16 years old.
But back in 1982, shortly before Les turned 32, she began to notice that his scent had changed in a way she couldn’t quite explain.
Scientists already understand that people’s scent changes naturally with age. This shift is linked to a chemical compound in our bodies called 2-nonenal, which tends to increase as people get older.
While speaking with The Guardian and remembering that time in their lives, she said: "In 1982, before Les's 32nd birthday, I noticed a musky, dank odour on him – he knew about my heightened sense of smell. I thought it might be the unprocessed air of the operating theatres he worked in and told him to shower more. That caused arguments."
Once Les was diagnosed, the couple joined a local Parkinson’s support group. That’s where Joy encountered the same powerful smell again—this time on other people with the condition.
Since then, Joy has committed herself to helping researchers explore how her unique sense of smell might offer a new way to detect Parkinson’s early, long before the condition becomes obvious.
"Les and I should have been enjoying retirement, but Parkinson's had stolen our lives," said Joy.
"We became determined that others wouldn't suffer the same way. When Les died in June 2015, he made me promise I'd carry on. I spent time in labs, smelling sufferers' T-shirts and swabs for sebum – the skin oil we all produce, which changes with the onset of Parkinson's."
Joy’s story has been a huge inspiration to scientists. It has helped spark the idea of developing a skin swab test that could potentially detect signs of Parkinson’s before a person even knows they have it.
Researchers at the University of Manchester in the UK have now created this special swab. Under lab conditions, they say it’s shown an impressive 95 percent accuracy in detecting the disease.
To build this test, the scientists focused on a natural oil found on human skin called sebum. They examined samples from people who had Parkinson’s and compared them to those without the condition.
During the analysis, they discovered thousands of distinct compounds in the sebum. Out of those, 500 were found to be noticeably different when comparing individuals with and without the disease.
Professor Perdita Barran, who led the team working on the study, explained: "At the moment we have developed it in a research lab and we are now working with colleagues in hospital analytical labs to transfer our test to them so that it can work within an NHS environment."
"We are hoping within two years to be able to start to test people in the Manchester area."
Joy has also opened up about what a difference an earlier diagnosis might have made in their lives, saying: "We would have spent more time with family."