The woman who smelled her husband’s Parkinson’s and today is key to detecting the disease

Parkinson’s, a neurodegenerative disease that affects more than 8 million people, according to the WHO, is very difficult to diagnose because there is no single test that can accurately detect it. So far, all that exists are physical exams, psychological evaluations, and brain scans.

However, this could change with the super nose of Joy Milnea 72-year-old Scottish woman, who, after the experience of having a husband with Parkinson’s, can perfectly distinguish the characteristic odor of this condition.

Joy Milne’s super sense of smell, scientifically known as hyperosmia, allows her to distinguish between how a person with Parkinson’s smells and a healthy person. Photo: Chris Watt

Joy Milne’s super nose

Milne, who by inheritance has hyperosmia —a disorder that increases olfactory sensitivity—, had detected that her husband, Themhad changed scent years after they were married.

“She had a rather unpleasant musty smell, especially around her shoulders and the back of her neck, and her skin had definitely changed,” the Scottish woman and former nurse told the BBC.

At first, she told her husband that the stench was possibly due to her poor grooming, but in later years it continued to persist, while her mood swings became more frequent.

Joy Milne next to her husband Les, who was diagnosed with Parkinson's and died in 2015. Photo: Joy Milne/PA Media/The Guardian

Joy Milne next to her husband Les, who was diagnosed with Parkinson’s and died in 2015. Photo: Joy Milne/PA Media/The Guardian

Les was diagnosed with Parkinson’s 12 years after Milne detected his peculiar scent. Then her symptoms began to become more apparent: difficulty speaking and walking, cognitive decline, and tremors.

But Milne only realized the link between ‘unpleasant’ odor and Parkinson’s when he accompanied Les to a support group for Parkinson’s patients and discovered that they all smelled similar.

The dream of a test to detect Parkinson’s

Although Les passed away in 2015, Milne promised her husband that she would investigate more about his super sense of smell. And that’s what she does to this day: support scientists who seek to develop a test that is a faithful portrait of her sense of smell.

In September 2022, for example, scientists at the University of Manchester announced that they had developed a simple test using Milne’s skills after three years of working with him.

Joy Milne

Milne has collaborated with the University of Manchester for the last three years. Now, the scientists of said enclosure have developed a test that seeks to be a faithful portrait of his super smell. Photo: BBC screenshot

The method consists of collecting with a swab sebum samples, an oily substance that our skin emanates naturally, but that is produced in an altered way during Parkinson’s. The chemical composition of these samples is then analyzed using a technique called mass spectrometry.

The exam, which takes just three minutes, was tested in an experiment with 150 male and female volunteers: 79 of them had Parkinson’s disease (experimental group) and the other 71 individuals did not (control group). Following the trial, the scientists found that of 4,000 unique compounds in sebum, 500 of them differed between sick patients and those who were not.

Although this test is still being tested, the team of scientists views the results of their first tests with great optimism, which is described in an article in the Journal of the American Chemical Society.

“What we might hope is that if we can diagnose people earlier, before motor symptoms appear, then there will be treatments that can prevent the spread of the disease. That is really the ultimate ambition,” said chemist Perdita Barran, who led the research to BBC Scotland.

For her support of science, Milne has been made an honorary professor at the University of Manchester and is also listed as the author of the scientific articles in which she collaborates.