Her Incredible Sense Of Smell Is Helping Scientists Find New Ways To Diagnose Disease
S E E D E D C O N T E N T
For most of her life, Joy Milne had a superpower that she was totally oblivious to. She simply had no idea she possessed an utterly amazing, slightly terrifying biological gift that scientists would itch to study.
In fact, Joy probably would have stayed oblivious if it hadn't been for her husband, Les Milne.
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."
Life with "her Les," as she calls him, was everything Joy had hoped
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.
So Joy started nagging: "[I] kept saying to him ... 'Look, you know, you're not washing enough.' "
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 40s, she began to see Les as a totally different person.
And then one night Joy woke up to her husband attacking her.
"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: Her 45-year-old husband had Parkinson's disease.
The discovery: an unusual sense of smell
Joy says that 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.
"We were late. ... A lot of people were there. And I walked into the room and I thought, 'SMELL!' " she says.
Joy realized that the other people in the room had the same greasy, musty smell that Les had — the smell that 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.
Could it be, Joy wondered, that Parkinson's has a smell?
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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, such as 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 Tilo Kunath . But initially, he says, he wasn't interested.
"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."
But then several months later, Kunath heard about research that showed dogs could smell cancer — 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.
Dejavu?