For most of her life, Joy Milne was completely unaware of the incredibly useful — though terrifying — superpower she possessed. Then, a Parkinson’s diagnosis (and everything that followed) made the signs impossible to ignore.
The two met in high school. Les was a 17-year-old swimmer and Joy was 16, a new transfer. She remembers dancing with him at a party and being struck by his wonderful smell."He had a lovely male musk smell.
He really did," she recalls. Everything about Les appealed to Joy. He was very thoughtful and generally quiet, but had a wicked sense of humor. After college they got married and set off on happily-ever-after. Les became a doctor, Joy became a nurse, and they had three boys. Joy says that as a couple they were so easy together — they rarely fought:"We disagreed about things now and again, but we didn't fight, fight."But then one day, about 10 years into the marriage when Les was 31, he came home and strangely, Joy says, he smelled different."His lovely male musk smell had got this overpowering sort of nasty yeast smell," she says. At first Joy thought it must be something from the hospital where he worked and told him to shower, but that didn't help, and over the weeks and months that followed the smell just seemed to grow stronger.But the smell wouldn't yield, and eventually Les got mad whenever Joy told him to shower. He couldn't smell it, he grumbled, and neither could anyone else."He just would stomp off in a huff and say, 'Oh stop going on about that!" I had to just let it go and put up with it," she recalls. Unfortunately as the years peeled on, Joy began to feel that it wasn't just her husband's smell that was changing. "It was his personality, his character. He began to change. He was more moody. He wasn't as tolerant," she says. They fought more and more. So many of the qualities Joy valued in her husband — his thoughtfulness, his patience, his quiet dignity, began to bleed away until eventually, by his early 40's, she began to see Les as a totally different person."He was sort of screaming and shaking me and you know, but he was totally oblivious of it," she says. Les was clearly having a nightmare, but after the attack Joy put her foot down. She was worried Les had a brain tumor — they needed to seek medical attention. She remembers sitting next to Les in a sterile office as the doctor delivered his diagnosis:Joy says over the next 20 years she and Les tried to make the best of things but it was difficult: the loss of movement, the loss of work, the slow narrowing of their world. Still, they struggled through. Then about seven years ago, they decided to attend a support group for people suffering from Parkinson's.'SMELL!'!" she says. Joy realized that the other people in the room had the same greasy, musty smell Les had. The smell Joy had first noticed when Les was just 31."And then I realized, for some people it smelled stronger and for other people it didn't smell so strong," she says.As they drove home from the meeting Joy kept puzzling it over in her head, and by the time they arrived she'd decided she would tell her husband. She says once she made her discovery clear his eyes widened:"He's a doctor, we both understood the significance. Immediately." To begin, this was a new scientific discovery, but also, Joy had smelled the disease on Les more than a decade before his symptoms got severe enough for them to seek medical help. If Joy could predict Parkinson's before its well-known symptoms, like shaking and sleep disruption, even started to appear, maybe she could work with researchers. It might lead to a breakthrough. Joy and Les knew instantly they had to get this information to the right scientist. So they went to see a Parkinson's researcher at the University of Edinburgh named"I just dismissed it, I have to say. It just didn't seem possible," he says."Why should Parkinson's have an odor? You wouldn't normally think neurodegenerative conditions such as Parkinson's, or Alzheimer's would have an odor."Which of course, made him think back to Joy. So he tracked her down and asked her to come to his lab for a special test he devised himself.Kunath asked one group of people who had Parkinson's and another group of people who didn't have Parkinson's to take home white T-shirts, wear them overnight, then return them. Then Kunath gave the t-shirt to Joy to smell."They were all given randomized numbers and put in a box and then she was asked to take each one out and give it a score," he says. Was the person who wore this shirt at an early stage of Parkinson's? In a late stage of Parkinson's? Something in between? Or maybe they didn't have the disease at all.In fact out of all the samples, Joy made only one mistake. She identified a man in the control group, the group without Parkinson's, as having the disease. But many months later, Kunath says, that man actually approached him at an event and said,"Tilo you're going to have to put me in the Parkinson's pile because I've just been diagnosed." It was incontrovertible: Joy could not only smell Parkinson's, but could smell it even in the absence of its typical medical presentation.in March of 2019, listing Joy as a co-author. Their research identified certain specific compounds that may contribute to the smell that Joy noticed on her husband and other Parkinson's patients.Joy and her super smelling abilities have opened up a whole new realm of research, Kunath says. Researchers, including
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