The woman who could 'smell' Parkinson's revealed the 'particular scent' on her husband years before diagnosis

A woman’s rare condition of hyperosmia, an incredibly sensitive sense of smell, helped her sniff out the Parkinson’s disease; talk about miracles!


The medical marvel!

It’s not a new invention, Joy Milne herself is quite a bit of a medical marvel!

The Scotswoman, who had been with her now-late husband, Les, since she was 16 years old, had been accustomed to his smell, given their familiarity with each other for such a long time. A few years after marrying her husband, Joy 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. While she kept telling him that he must not be showering properly, he dismissed her suspicions with anger at that moment.

However, as years went by and the smell didn’t go away, the couple became concerned. At last, when Joy took Les to the doctor, he was diagnosed with Parkinson’s disease.


What followed after that diagnosis 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.

It is noteworthy here, that Science has already worked out why a person's smell changes as they age, which all comes down to the substance 2-nonenal that's found in the human body increasing as we get older. However, Les' changing smell wasn't just age related, but health related as well.


The minute change!

Joy has had the rare condition of hyperosmia, which refers to a heightened or increased sensitivity to smells, often described as a "super-smeller" condition, where individuals perceive odors more strongly than average, which enabled her to have an ability to sniff out things - something that the rest of us wouldn’t be able to.

Noticing a change in smell in her husband, Joy revealed what she had told the same to Les.

When Les was around 29 years old, Joy revealed, "there was a definite change, a very distinct change," and by the time he was 31 "his smell had completely changed" and other things had "begun to happen", leading her to think "maybe he had a brain tumour".


Recalling the time, she told The Guardian: "In 1982, before Les’s 32nd birthday, I noticed a musky, dank odour on him – he knew about my heightened sense of smell. I thought it might be the unprocessed air of the operating theatres he worked in and told him to shower more. That caused arguments."

Eventually, a neurologist diagnosed Les with Parkinson's.

Now, ancient healers had such finely tuned senses that they could detect a disease simply by observing a person up close.

However, in the modern day, Joy miraculously has a similar ability called ‘hyperosmia’, a hypersensitivity to smell.

After Les’ diagnosis, the couple went on to make the connection between Joy's sense of smell and his diagnosis, but it wasn't until later that they discovered that Joy was able to detect the disease in other people too.


The aftermath:

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.

In fact, Joy revealed that she had received dozens of T-shirts each day at her doorstep from strangers wanting to know if they had 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.

Les and Joy had attended a Parkinson's support group when she was hit with an overwhelmingly familiar smell. After coming to learn about the scale of her unique skill was, Joy has gone on to do all she can to help scientists work out a way to use her sense of smell as a means of early Parkinson's disease detection.

Joy revealed, "Les and I should have been enjoying retirement, but Parkinson’s had stolen our lives," adding, "We became determined that others wouldn’t suffer the same way. When Les died in June 2015, he made me promise I’d carry on. I spent time in labs, smelling sufferers’ T-shirts and swabs for sebum – the skin oil we all produce, which changes with the onset of Parkinson’s. I could detect whether the person had the disease with 95% accuracy. I was surprised."


The miraculous invention:

After Les got diagnosed with Parkinson’s disease, he and Joy 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 Joy to sort the garments into two separate piles based on which ones were worn by Parkinson’s patients and which ones by healthy individuals.

Tilo told NPR, “She was incredibly accurate!” In a press release, he said, “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.”

As Joy’s sense of smell spurred curiosity in scientists, she then initiated this study funded by the Michael J. Fox Foundation.


Joy, a retired nurse from Perth, started collaborating with throngs of researchers, including Perdita Barran, a professor of mass spectrometry, 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.


Devising the experiment:

Professor Barran told Sky News, "We had to do an experiment to separate the obvious movement symptoms of people with Parkinson's disease from the smell."

They had people wear T-shirts and then put the T-shirts in bags, which were given to Joy, who "was 100% correct in smelling the T-shirts and diagnosing from a T-shirt whether someone had Parkinson's or not".

Professor Barran said, "So that was the first incredible step change, because it actually meant we could diagnose someone from the material that they were wearing, from clothes."

They now use gauze or Q-tips to collect samples and analyse them using a method called mass spectrometry, which "weighs molecules and helps us to find out what they are". The method allows Joy to smell molecules while they are identified by the machine.

Professor Barran explained, "So we split them. Some go to be weighed and some go to Joy's nose. And that allows us to code to find out which of the very complicated mixture of molecules we have on our skin from skin swabs, are to do with the disease, are the ones that smell of it."


The impact:

Neurologist Monty Silverdale told EuroNews, "This test has the potential to massively improve the diagnosis and management of people with Parkinson’s disease."

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. As per them, sebum 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” now collects sebum from patients’ backs and uses mass spectrometry to detect the disease with 95% 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.


What is Parkinson’s disease?

Parkinson's disease is a progressive brain disorder that causes movement problems, including tremors, stiffness, and slowness. It's caused by the death of nerve cells in the brain that produce dopamine, a chemical that controls movement.


Joy, while talking about whether she finds it a blessing or extremely difficult, told Sky News, "I think, because it's a genetic thing in the female side of the family, my grandmother did warn me when she trained me, she did warn me not to use [it].

She added, "She said I would find it very difficult unless I made the decision that I would go ahead and do it. And I have made that choice. I was a nurse, a carer for my mother-in-law and my husband with Parkinson's, and really it was the right choice. I think it was the right choice."


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