Woman’s Rare Ability to ‘Smell’ Parkinson's Disease Helps Scientists In a Way Like Never Before

A few years after marrying her husband Les, Joy Milne noticed an unusual whiff coming from his body. The oddly “musty” odor was being emitted by his shoulders and from the back of his neck. She kept telling him that he must not be showering properly, as per Sky News. At that moment, he dismissed her suspicions with anger, but as years went by and the smell didn’t go away, the couple became concerned. At last, when Milne took Les to the doctor, he was diagnosed with Parkinson’s disease. Events unfolding in the coming days revealed that Milne could actually “smell the Parkinson’s disease” with her heightened sense of smell. Her rare ability is helping scientists develop a faster diagnosis for Parkinson’s, as per a report published in the Journal of the American Chemical Society.

Ancient healers had such finely tuned senses that they could detect a disease simply by observing a person up close. In the modern day, Milne, a Scottish woman, has a similar ability called “hyperosmia.” She can smell the telltale scent of diseases, especially Parkinson’s disease. Inspired by the “musty smell” episode of her late husband, Milne now receives dozens of T-shirts each day at her doorstep from strangers wanting to know if they have Parkinson’s disease. Although nowadays, she doesn’t open the packages herself, as she told The Telegraph, she smelled every T-shirt the first time scientists sent these to her, to test her amplified sense of smell.

Several years after Les’s diagnosis, the couple became part of a Parkinson’s support group. As they entered the room, Milne realized that several people there emitted the same “musty” smell she had first detected in her husband. That’s when a light bulb popped in her head. She and Les reached out to Tilo Kunath, a Parkinson’s researcher at the University of Edinburgh in Scotland. To test her claim, the researchers gave her a set of T-shirts worn overnight, some by Parkinson’s patients and some by healthy people. The researchers asked Milne to sort the garments into two separate piles based on which ones were worn by Parkinson’s patients and which ones by healthy individuals.

“She was incredibly accurate,” Tilo told NPR. “Our early results suggested that there may be a distinctive scent that is unique to people with Parkinson’s. If we could identify the molecules responsible for this, it could help us develop ways of detecting and monitoring the condition,” he said in a press release. Milne’s sense of smell spurred curiosity in scientists, who then initiated this study funded by the Michael J. Fox Foundation. Milne, a retired nurse from Perth, started collaborating with throngs of researchers, including Perdita Barran from the University of Manchester in the UK, to develop a tool for early detection of Parkinson’s. They ended up developing a unique skin-swab test that could enable doctors to detect this disease in less than three minutes.

"This test has the potential to massively improve the diagnosis and management of people with Parkinson’s disease," neurologist Monty Silverdale told EuroNews. The study authors described in a press release that people with Parkinson’s have certain lipids of high molecular weight in their “sebum,” an oily substance found on the skin, that are more active. Sebum, they said, tends to collect in the upper back region, the same area where Milne noticed the unusual musty smell in her husband.

According to the BBC, the “skin swab test” collects sebum from patients’ backs and uses mass spectrometry to detect the disease with 95 percent accuracy under laboratory conditions. Parkinson’s, according to the Parkinson’s Foundation, is a neurodegenerative disorder that affects the dopamine-producing areas of the brain, often reducing movement and causing postural instability, limb stiffness, pill-rolling tremors, and slowness. While the cause behind this disease remains largely unknown, an estimated 1 million Americans are living with Parkinson’s. In such a scenario, this swab test could prove to be groundbreaking.