She picked up on a change in her husband's body odor six years before he was diagnosed with Parkinson's disease.
Joy Milne never thought her sense of smell could one day change the way Parkinson's disease is diagnosed. The 69-year-old retired nurse from Perth, Scotland, has now guided scientists to an incredible breakthrough in early detection of the disease which experts hope will ultimately help develop treatments to stop it in its early stages. This revolutionary discovery is made all the more mindblowing by the fact that it all began with Milne noticing a change in the way her husband, Les, smelled. He worked as a consultant anesthetist before he was diagnosed with Parkinson's at the age of 45. He died two decades later in June 2014, at the age of 65.
However, Milne's super sense of smell picked up on a change in her husband's body odor six years before he was actually diagnosed. "His smell changed and it seemed difficult to describe. It wasn't all of a sudden. It was very subtle - a musky smell. I got an occasional smell," she told BBC. Although she didn't think much of it at the time, she realized that it could be linked to the progressive nervous system disorder after joining the charity Parkinson's UK and encountering others with the same distinct odor.
Intrigued by the distinct odor she was picking up on, Milne mentioned her discovery to scientists at a talk who were immediately hooked to the idea that Parkinson's disease could potentially produce a signature smell. Wanting to explore the possibility, Edinburgh University decided to test Milne. She turned out to be unbelievably accurate. Dr. Tilo Kunath, a Parkinson's UK fellow at the school of biological sciences at Edinburgh University, who was one of the first to talk to her said, "The first time we tested Joy we recruited six people with Parkinson's and six without. We had them wear a t-shirt for a day then retrieved the t-shirts, bagged them and coded them."
"Her job was to tell us who had Parkinson's and who didn't. Her accuracy was 11 out of 12. We were quite impressed. She got the six Parkinson's but then she was adamant one of the 'control' subjects had Parkinson's. But he was in our control group so he didn't have Parkinson's. According to him and according to us as well he didn't have Parkinson's. But eight months later he informed me that he had been diagnosed with Parkinson's. So Joy wasn't correct for 11 out of 12, she was actually 12 out of 12 correct at that time. That really impressed us and we had to dig further into this phenomenon," he revealed.
For more than 3 years we’ve been following the journey of Joy Milne – our super smeller from Perth.— Parkinson's UK Scot (@ParkinsonsUKSco) March 20, 2019
Joy’s ability to smell Parkinson’s has been tried and tested and been rigorously scrutinised. Excitingly, there’s now a strong... https://t.co/BBEK4tEPoa
Thus began a study to develop a smell test that would help diagnose Parkinson's disease in its early stages. Backed by the charity, Parkinson's UK, researchers at Manchester, Edinburgh, and London set out examining about 200 people with and without the disease. Speaking of the study's potential back in 2015, Katherine Crawford, the Scotland director of Parkinson's UK, said, "This study is potentially transformational for the lives of people living with Parkinson's. Parkinson's is an incredibly difficult disease to diagnose. We still effectively diagnose it today the way that Dr. James Parkinson diagnosed it in 1817, which is by observing people and their symptoms. A diagnostic test like this could cut through so much of that, enable people to go in and see a consultant, have a simple swab test and come out with a clear diagnosis of Parkinson's. It would be absolutely incredible and life-changing for them immediately."
Fascinating discussion with Joy Milne this morning (and Dr Monty Silverdale) who can actually smell Parkinson’s disease! A test is being developed because Joy can detect the disease 10+ years before it is diagnosed. Truly incredible #BBCbreakfast @ParkinsonsUK pic.twitter.com/RypVQtehZp— Dan Walker (@mrdanwalker) March 20, 2019
Their efforts bore fruit in 2019 when researchers in Manchester announced that they had identified the molecules on the skin linked to the smell. According to BBC, the study revealed that a number of compounds, particularly hippuric acid, eicosane, and octadecanal, were found in higher than usual concentrations on the skin of Parkinson's patients. Lead author Prof. Perdita Barran, from the school of chemistry at the University of Manchester, said, "What we found are some compounds that are more present in people who have got Parkinson's disease and the reason we've discovered them is because Joy Milne could smell a difference. She could smell people who've got Parkinson's disease."
Dr. Drupad Trivedi of @OfficialUoM breaks down the science behind their groundbreaking Parkinson's study, where they're working with Joy Milne, who can smell Parkinson's, Alzheimer's, TB and some cancers🤯.— Reason Digital (@ReasonDigital) February 27, 2020
We helped UoM create a prototype to digitise and upscale this research. pic.twitter.com/bHwhHB78U6
"So we designed some experiments to mimic what Joy does, to use a mass spectrometer to do what Joy can do when she smells these things on people with Parkinson's. What we might hope is if we can diagnose people earlier, before the motor symptoms come in, that there will be treatments that can prevent the disease spreading. So that's really the ultimate ambition," Barran added.
"I'm Joy Milne, I'm 67 and I can smell Parkinson's" Joy astonished doctors with her ability to detect Parkinson's disease through smell. Since then, she has helped scientists find what causes the odour. #TheNine— The Nine (@BBCScotNine) March 20, 2019
(via @BBCScotlandNews) pic.twitter.com/sKZX4SIkY8