NOEL KING, HOST:
There's a woman in Scotland named Joy Milne who has a wildly unusual ability - so unusual, in fact, that researchers hope she can help them create a new set of scientific tools. In a new episode of the NPR podcast Invisibilia, host Alix Spiegel explains how Joy's experience with her husband led her to discover her talent.
ALIX SPIEGEL, BYLINE: For most of her life, Joy Milne was totally oblivious to her amazing, though tiny bit terrifying, superpower, simply had no idea she possessed the kind of biological gift scientists would itch to study. And she probably would've stayed oblivious if it hadn't been for her husband, Les.
The two met in high school at a party. She remembers dancing with him and being struck by his wonderful smell.
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JOY MILNE: He had a lovely male musk smell. He really did - you know, a very masculine smell.
SPIEGEL: 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. They had three boys, everything they ever wanted.
But then, one day about 10 years into the marriage, Les came home. And strangely, he smelled different.
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MILNE: His lovely musk - male musk smell had got this overpowering - just a nasty yeast smell.
SPIEGEL: At first, Joy thought it must be something from the hospital and told him to shower. But that didn't help. And over the weeks and months that followed, the smell didn't go away. It seemed to grow stronger, so Joy started nagging.
MILNE: Kept on saying to him, look; you know, you're not washing enough.
SPIEGEL: But no matter how much Les washed, the smell wouldn't yield. And unfortunately, as the years piled on, Joy began to feel that it wasn't just her husband's smell that was changing.
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MILNE: It was his personality, his character. He began to change. He was more moody, wasn't as tolerant.
SPIEGEL: So many of the qualities that Joy valued in her husband - his thoughtfulness, his patience - began to bleed away until eventually, by his early 40s, she began to see Les as a totally different person.
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MILNE: Well, he wasn't my Les anymore. It's just simply that. It's very strange living with another person that you didn't marry.
SPIEGEL: And then one night, Joy woke up to her husband attacking her.
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MILNE: He just got ahold of me - just grabbed me, my night dress. And as he rolled over me, we both rolled out of the bed. He was sort of (moaning) and shaking me. And, you know, but he was totally oblivious of it.
SPIEGEL: Les was 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.
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SPIEGEL: She remembers sitting next to Les in a sterile office as the doctor delivered his diagnosis. Her husband had Parkinson's.
When he was told that he had Parkinson's, was he devastated?
MILNE: Yes, he was. Yeah.
SPIEGEL: Les was young for a diagnosis, only 45. Still, Joy says over the next 20 years, she and Les tried to make the best of things - the loss of movement, the loss of work, the slow narrowing of their world - until about seven years ago, when they decided to attend a support group for people suffering from Parkinson's.
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MILNE: We were late. You know, a lot of people were there. And I walked into the room, and I thought - no, the smell.
SPIEGEL: It was the same greasy, musty smell that Les had - the smell Joy had first sensed when Les was just 31.
MILNE: And then I realized for some people that it smelled stronger, and other people, it didn't smell so strong.
SPIEGEL: Could it be, Joy wondered, that Parkinson's had a smell? When they got home, she explained her discovery to Les.
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MILNE: He's a doctor. We both understood the significance immediately.
SPIEGEL: Joy and Les knew instantly they had to get this information to the right scientist, so they went to see a Parkinson's researcher named Tilo Kunath. But initially, he wasn't that interested.
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TILO KUNATH: I just dismissed it. I have to say I didn't - it just didn't seem possible. Why should Parkinson's have a odor?
SPIEGEL: But then several months later, Tilo heard about this research that showed that dogs could smell cancer, which, of course, made him think back to Joy. So he asked her to come to his lab for a special test he devised himself. Tilo asked both a group of people who did have Parkinson's and a group of people who didn't have Parkinson's to take home these white T-shirts and wear them overnight, then return them to Tilo.
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KUNATH: They were all given randomized numbers and put in a box. And then she was asked to take each one out and smell it and give it a score.
SPIEGEL: Was the person who wore this shirt at an early stage of Parkinson's, a late stage, something in between? Or maybe they didn't have Parkinson's at all.
KUNATH: She was incredibly accurate.
SPIEGEL: In fact, out of all the samples, Joy only made one mistake. She identified a man in the control group without Parkinson's as having the disease. But many months later, that man actually approached Tilo at an event.
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KUNATH: And he said, Tilo, you're going to have to put me in the Parkinson's pile 'cause I've just been diagnosed.
MILNE: And that was the deciding moment.
SPIEGEL: It was incontrovertible. Joy could not only smell Parkinson's but could predict it even in the absence of its typical medical presentation. In fact, Joy's nose is so good, she's been working with researchers all over the world. She can now identify all kinds of illnesses - tuberculosis, Alzheimer's, cancer, diabetes. And her nose has been used to create a test that confirms the presence of Parkinson's through its molecular signature.
As for her life with Les, Joy says once it became clear that she might hold in her nose a tool that could move research on Parkinson's forward, it transformed their life together. It seemed to give Les hope, and he became more openly affectionate.
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SPIEGEL: Your Les came back to you?
MILNE: He did. He definitely did.
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SPIEGEL: In fact, Joy says the research she's doing with her nose was the very last thing they ever spoke about.
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MILNE: He said, you won't let this go. You will do it, won't you? You promise? A couple of hours later, he dropped dead.
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MILNE: But I've done it, yeah. I kept my promise, so it should make an awful lot of difference.
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KING: That was Alix Spiegel and Joy Milne. The whole story is on NPR's Invisibilia podcast. Transcript provided by NPR, Copyright NPR.
