Twelve years before being diagnosed with Parkinson's Les Milne began to smell different.
“His lovely musky masculine scent of him had turned into some kind of nasty yeasty smell,” Joy Milne, his wife, told National Public Radio (NPR).
It was 1982 and he was 31 years old.
Over time, not only his smell changed, but also his personality and character.
In 1994, he was diagnosed with Parkinson's disease, the second most common neurodegenerative disorder and the fastest growing in the world, according to the World Health Organization (WHO).
At a meeting of patients with the disease in 2009, Milne recognized in others the characteristic odor she discovered on her husband.
A couple of years later, her discovery made her question scientists during a conference:
"Why aren't they using the smell of Parkinson's to diagnose it early?"
.
His question motivated investigations by the University of Manchester, England, whose results were published in the
Journal of the American Chemical Society
in 2019 and in 2022. Its authors raise the urgency of developing tests, in this case with human sebum, to detect the disease before severe symptoms appear.
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A Spanish study, published in the journal
Nature
in 2021, found a marked reduction in the levels of various free fatty acids in the plasma of people with Parkinson's, before the severe signs of the disease worsened.
When these signs appear "it's too late," Carolina González, professor of Analytical Chemistry at the Faculty of Pharmacy at the CEU San Pablo University, Spain, and one of the authors of the text, explained to Telemundo News.
By then, more than 70% of the dopaminergic neurons —nerve cells in the brain that produce dopamine, a neurotransmitter that fulfills an endless number of functions in our body— “have already been lost, have died and cannot be regenerated,” González lamented.
Is it possible to detect Parkinson's before it happens?
This says science:
sebum as a clue
The smell theory suggested by Milne—a retired nurse and considered by experts to have super noses—was initially tested in an experiment involving 12 people who were required to wear cotton T-shirts for one night.
Milne smelled them and detected Parkinson's in seven of them.
He even found it in someone who had not yet been diagnosed and received the official news several months later.
The scent she identified was on his neck and upper back.
Using this information, the researchers developed another test, using medical gauze to collect sebum samples from the back, neck, and forehead of 64 participants.
Then they did another one with swabs and 150 people.
This is how Depanjan Sarkar, one of the study authors, detailed the process:
“The tallow is transferred to a filter paper from a sampling swab, we cut it into a triangle shape, add a drop of solvent, apply a voltage, and this transfers the compounds in the tallow to the mass spectrometer.”
They found "more than 4,000 unique compounds, of which 500 are different among people with Parkinson's disease," he said.
With this method, according to scientists, they can detect it in three minutes.
This non-invasive procedure seeks to replicate what Milne does with his sense of smell but with mass spectrometry, a detection and analysis technique.
“Now we could take tests from any of you and in nine out of 10 cases, we could tell someone with the disease from someone who doesn't,” Perdita Barran, the lead researcher, revealed in a 2019 talk.
It's just the first step in a long process to develop a test that can be used in real life."
Melissa Armstrong, PROFESSOR OF NEUROLOGY
That year, an estimated 8.5 million people were living with Parkinson's.
Although it is considered a disease of aging, according to Barran, "it will affect one in every 15 people in the world, and of these,
one in every 20 are under 45 years of age."
Until now there is no test that detects it early, before tremors and other motor symptoms appear, but it is considered that the damage begins when these are not perceptible.
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"The current and future objective is to translate these findings into a test of clinical utility," detailed a statement on the University of Manchester page.
“I would say it is an active area of study,” Melissa Armstrong, professor of neurology and director of the Mangurian clinical research site for Lewy body dementia at the University of Florida, explained to Telemundo News.
Researchers in Manchester used mass spectrometry to replicate what Joy Milne detected with her nose.
File photo.
September 2017. picture alliance / picture alliance via Getty Image
“The investigation takes a long time,” he clarified.
“It is only the first step in a long process to develop a test that can be used in real life”
and in medical offices.
Regarding the particular smell of Parkinson's, he added that "it is true that some families describe it and it is true that there is research in this area."
As for sebum, that oily and yellowish substance found on the skin, it had already been identified as a possible sign of the disease by cardiologist David Krestin who, in 1927, noticed that people with Parkinson's suffered acne breakouts and excessive tallow.
Krestin published his observations in the belief that they might help diagnose him, but "his work was ignored, even rejected by the neurological community," Barran said.
Parkinson's and plasma
In 2021, a Spanish team of researchers, of which González is a part, revealed in the journal
Nature
that, after analyzing the plasma of 78 people whose samples had been taken 15 years ago, they observed in 39 of them —diagnosed with Parkinson's during that period— a “marked reduction in the levels of several free fatty acids that occurred long before the appearance of the first signs of the disease”.
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González specified that they studied all the compounds in the samples and looked for differences between people with and without Parkinson's.
"We saw that the two groups were perfectly separated and found mainly a marked reduction in the levels of various free fatty acids," he said.
Free fatty acids are, for example, oleic acid found in olive oil or others found in the body naturally or acquired through the diet.
These are used to “generate energy and develop tissues”.
Their findings match those of a previous January 2021 study in China.
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González explained to Telemundo News that, until today, Parkinson's lacks biomarkers, which are specific compounds of a pathology.
In the case of diabetes, its biomarker could be glucose or blood sugar, which, with a simple test, reveals the levels found in a person.
“How could we get a simple and fast analysis of these compounds?
It is a very good question and it is what we would like in the future: to be able to transfer to the clinic and, perhaps, to be able to develop a device that would allow us to measure these fatty acids”, he pointed out.
Center for Metabolomics and Bioanalysis (CEMBIO), CEU San Pablo University, Spain. Courtesy / Carolina González
Now, he said, they need to validate the results of their study with a larger group of participants.
The plasma samples they used were stored in a biobank and were collected from people who were, at the time, healthy.
The Biodonostia Health Research Institute followed them up and noted that, over the years, some had developed the disease.
"I believe that, unfortunately, we still have a long way to go
," he clarified.
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Despite the fact that the disease is irreversible, early detection could improve the quality of life of patients and their families, as they could access medicines and therapies to alleviate symptoms.
We're not going to find a cure right now but stopping or alleviating Parkinson's will be tremendous."
Joy Milne's super sense of smell detected Parkinson's
“My husband suffered from the disease for 21 years after his diagnosis, but he had it many years before that.
I wish people didn't suffer the way he did," Milne told
Scientific American
.
Les, her husband, died in 2015.
In another interview, he told how disheartening it was to see the evolution of the disease.
In the advanced stages, people lose control of their bodies and develop cognitive problems, including dementia.
“It's horrible to see your partner change like that, if we get the test to work, we won't get to that stage, because by the time you get the diagnosis 60 to 70% of the neural damage is already done.
We are not going to find a cure now but stopping or alleviating Parkinson's will be tremendous,” she said.
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