https://www.npr.org/sections/health-shots/2020/03/23/820274501/her-incredible-sense-of-smell-is-helping-scientists-find-new-ways-to-diagnose-di

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A Woman Who Can Smell Parkinson's Is Inspiring New Research Into
Diagnosis : Shots - Health News Years before he got diagnosed with
Parkinson's, Joy Milne noticed her husband's characteristic scent had
changed. The discovery that she could smell his illness has opened up
a new field of research.
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Invisibilia

Her Incredible Sense Of Smell Is Helping Scientists Find New Ways To
Diagnose Disease

March 23, 20204:45 PM ET

By 

Alix Spiegel

, 

Elena Renken

Her Incredible Sense Of Smell Is Helping Scientists Find New Ways To
Diagnose Disease

7:17
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A woman with an unlikely superpower -- an incredible sense of smell --
has inspired a new field of scientific research.
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Leonardo Santamaria for NPR
Leonardo Santamaria for NPR

For most of her life, Joy Milne had a superpower that she was totally
oblivious to. She simply had no idea she possessed an utterly
amazing, slightly terrifying biological gift that scientists would
itch to study.

In fact, Joy probably would have stayed oblivious if it hadn't been
for her husband, Les Milne.

Listen to the full story on Invisibilia

This story comes from an episode of Invisibilia's Season 6. Listen
here for the full story.

An Unlikely Superpower

Invisibilia

An Unlikely Superpower

The two met in high school. Les was a 17-year-old swimmer and Joy was
16, a new transfer. She remembers dancing with him at a party and
being struck by his wonderful smell. "He had a lovely male musk
smell. He really did," she recalls.

Everything about Les appealed to Joy. He was very thoughtful and
generally quiet but had a wicked sense of humor.

After college, they got married and set off on happily-ever-after.
Les became a doctor, Joy became a nurse, and they had three boys. Joy
says that as a couple they were so easy together -- they rarely
fought: "We disagreed about things now and again, but we didn't
fight, fight."

Life with "her Les," as she calls him, was everything Joy had hoped

But then one day, about 10 years into the marriage, when Les was 31,
he came home, and strangely, Joy says, he smelled different. "His
lovely male musk smell had got this overpowering sort of nasty yeast
smell," she says.

At 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.

So Joy started nagging: "[I] kept saying to him ... 'Look, you know,
you're not washing enough.' "

But the smell wouldn't yield, and eventually Les got mad whenever Joy
told him to shower. He couldn't smell it, he grumbled, and neither
could anyone else. "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.

Unfortunately, as the years peeled on, Joy began to feel that it
wasn't just her husband's smell that was changing.

"It was his personality, his character. He began to change. He was
more moody. He wasn't as tolerant," she says.

They fought more and more. 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.

And then one night Joy woke up to her husband attacking her.

"He was sort of screaming and shaking me and you know, but he was
totally oblivious of it," she says.

Les was clearly having a nightmare, but after the attack Joy put her
foot down. She was worried Les had a brain tumor -- they needed to
seek medical attention. 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.

The discovery: an unusual sense of smell

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. Still, they struggled
through. Then about seven years ago, they decided to attend a support
group for people suffering from Parkinson's.

"We were late. ... A lot of people were there. And I walked into the
room and I thought, 'SMELL!' " she says.

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 then I realized for some people it smelled
stronger and for other people it didn't smell so strong," she says.

Could it be, Joy wondered, that Parkinson's has a smell?

As 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.

She says once she made her discovery clear, his eyes widened: "He's a
doctor -- we both understood the significance. Immediately."

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. 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. It might lead to a breakthrough.

Joy and Les knew instantly they had to get this information to the
right scientist. So they went to see a Parkinson's researcher at the
University of Edinburgh named Tilo Kunath. But initially, he says, he
wasn't interested.

"I just dismissed it, I have to say. It just didn't seem possible,"
he says. "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."

But then several months later, Kunath heard about research that
showed dogs could smell cancer -- which of course made him think back
to Joy. So he tracked her down and asked her to come to his lab for a
special test he devised himself.

The experiment

Kunath asked one group of people who had Parkinson's and another
group of people who didn't have Parkinson's to take home white
T-shirts, wear them overnight and then return them.

Then Kunath gave the T-shirts to Joy to smell. "They were all given
randomized numbers and put in a box, and then she was asked to take
each one out and give it a score," he says.

Was the person who wore this shirt at an early stage of Parkinson's?
In a late stage of Parkinson's? Something in between? Or maybe the
person didn't have the disease at all.

"And she was incredibly accurate," Kunath says.

In fact, out of all the samples, Joy made only one mistake. She
identified a man in the control group, the group without Parkinson's,
as having the disease. But many months later, Kunath says, that man
actually approached him at an event and said, "Tilo, you're going to
have to put me in the Parkinson's pile because I've just been
diagnosed."

It was incontrovertible: Joy not only could smell Parkinson's but
could smell it even in the absence of its typical medical
presentation.

Kunath and fellow scientists published their work in ACS Central
Science in March 2019, listing Joy as a co-author. Their research
identified certain specific compounds that may contribute to the
smell that Joy noticed on her husband and other Parkinson's patients.

[dsc_5726_c]
Enlarge this image

Joy Milne has an unusual ability: She can smell Parkinson's disease.
Chris Watt hide caption

toggle caption
Chris Watt

Joy Milne has an unusual ability: She can smell Parkinson's disease.

Chris Watt

Working toward a diagnostic

Joy and her super smelling abilities have opened up a whole new realm
of research, Kunath says. Researchers, including Perdita Barran at
the University of Manchester, led a second, larger study and have
recently found 10 compounds linked to Parkinson's by using mass
spectrometry and other techniques to analyze samples from 274 people.
They're hoping to find a way to diagnose Parkinson's from skin-based
biomarkers, according to Barran. More work is soon to come, she adds.

That's the ultimate goal, Kunath says: to develop a new tool to
detect Parkinson's early. "We really want to know what is behind this
and what are the molecules. And then can the molecules be used as
some sort of diagnostic test?"

Parkinson's begins slowly, taking years or maybe even decades before
symptoms such as tremors appear, Kunath says. "Imagine a society
where you could detect such a devastating condition before it's
causing problems and then prevent the problems from even occurring,"
he adds. Combined with potential therapies to prevent or mitigate
Parkinson's, a molecular test that identified Parkinson's would be a
powerful tool.

There's some evidence -- and history -- around the idea of scent
signaling the presence of a disease, says Richard Doty, the director
of the Smell and Taste Center at the University of Pennsylvania's
Perelman School of Medicine. "It used to be that physicians did use
breath odor and other odors to signify certain disorders. But that's
not really invoked presently, because we have so much better ways of
[diagnosing] things." He also says that smell is an imperfect
biomarker because confounding factors could influence people's odors,
such as diet and age.

"This idea of an olfactory biomarker [for a disease] is fascinating,"
said Dr. Thomas Hummel of the Technical University of Dresden's Smell
& Taste Clinic, via email. But there remain "numerous open
questions."

Joy's smell test for Parkinson's is "interesting but not definitive,"
Doty adds. More studies would lend it more certainty, and he says, "I
think it's still up in the air."

But Joy's superpower is so unusual that researchers all over the
world have started working with her and have discovered that she can
identify several kinds of illnesses -- tuberculosis, Alzheimer's
disease, cancer and diabetes.

Sharing their story -- for science

As for her life with Les, Joy says, once it became clear that she
might hold in her nose a tool that could move research on Parkinson's
forward, Les had a eureka moment: They had more knowledge to offer
science. Joy had smelled his Parkinson's more than a decade before
diagnosis, so maybe, Les told Joy, if they thought very carefully
about their life together before the official diagnosis, they'd be
able to pinpoint early symptoms that hadn't yet been identified by
science.

"We had to write down everything that had happened, so that medicine
would understand what was happening to people with Parkinson's," Joy
says.

So for the last six weeks of his life, Les and Joy sat for daily
writing sessions. "They would only last 35 to 40 minutes at a time,
but the last six weeks were completely different," she recalls. "We
spent time each day discussing what happened to us over the last
20-odd years."

Joy says Les had always shied away from talking about his
Parkinson's. It seemed like it was so existentially threatening to
him -- this terrible dread DISEASE -- that he just had to shove it away
and couldn't acknowledge it. But he was freed by their discussions.

In fact, Joy says the research she's doing with her nose was the last
thing they ever spoke about. "He said, 'You won't let this go -- you
will do it, won't you? You promise?' " she recalls. Just a few hours
later, he died. But Joy has stayed true. "I've done it. I've kept my
promise. So it should make an awful lot of difference."

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