'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.'īut then several months later, Kunath heard about research that showed dogs could smell cancer - which of course made him think back to Joy. But initially, he says, he wasn't interested. So they went to see a Parkinson's researcher at the University of Edinburgh named Tilo Kunath.

Joy and Les knew instantly they had to get this information to the right scientist. 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. 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. She says once she made her discovery clear, his eyes widened: 'He's a doctor - we both understood the significance. 'And then I realized for some people it smelled stronger and for other people it didn't smell so strong,' she says.Ĭould it be, Joy wondered, that Parkinson's has a smell?Īs 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. 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 I walked into the room and I thought, 'SMELL!' ' she says. Then about seven years ago, they decided to attend a support group for people suffering from Parkinson's. 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. 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. She was worried Les had a brain tumor - they needed to seek medical attention.

Les was clearly having a nightmare, but after the attack Joy put her foot down. 'He was sort of screaming and shaking me and you know, but he was totally oblivious of it,' she says. 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.Īnd then one night Joy woke up to her husband attacking her.

Unfortunately, as the years peeled on, Joy began to feel that it wasn't just her husband's smell that was changing. '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. He couldn't smell it, he grumbled, and neither could anyone else. 'Look, you know, you're not washing enough.' 'īut the smell wouldn't yield, and eventually Les got mad whenever Joy told him to shower. So Joy started nagging: ' kept saying to him. 'His lovely male musk smell had got this overpowering sort of nasty yeast smell,' she says.Īt 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 then one day, about 10 years into the marriage, when Les was 31, he came home, and strangely, Joy says, he smelled different.

The girl who sees smells.