Sunday, March 3, 2024

Joy Milne Parkinson’s Disease

One Woman’s Ability To Sniff Out Parkinson’s Offers Hope To Sufferers

This Women Can Smell Parkinson’s Disease | TODAY

A musky odor may lead to new diagnostic tools for the neurodegenerative disease

Six years before her husband was diagnosed with Parkinsons disease, a progressive neurodegenerative disorder marked by tremors and movement difficulties, Joy Milne detected a change in his scent. She later linked the subtle, musky odor to the disease when she joined the charity Parkinsons UK and met others with the same, distinct smell. Being one of the most common age-related disorders, Parkinsons affects an estimated seven million to 10 million people worldwide. Although there is currently no definitive diagnostic test, researchers hope that this newly found olfactory signature will lead help create one.

Milne, a super-smeller from Perth, Scotland, wanted to share her ability with researchers. So when Tilo Kunath, a neuroscientist at the University of Edinburgh, gave a talk during a Parkinsons UK event in 2012, she raised her hand during the Q& A session and claimed she was able to smell the disease. I didnt take her seriously at first, Kunath says. I said, No, I never heard of that, next question please.

Whats that smell?

Chemical signatures

New tools for diagnosis

Hope for sufferers

My husband suffered from the disease for 21 years after his diagnosis but he had it many years before that, Milne says. I would like to see that people dont suffer the way he suffered. Milnes husband died last June.

Birth Of A Unique Collaboration

The question at first puzzled and confused Tilo. He had never before been asked about smell and it was not something he had previously come across in his research.

Although not directly related to his own Parkinsons research, Tilo was curious and discussed it with his colleague Professor Perdita Barran, then a University of Edinburgh researcher who is now based at the University of Manchester. This was the beginning of a long-term collaboration to discover the identity of what Joy was smelling.

The scientists believed that the scent may be caused by a chemical change in skin oil, known as sebum, that is triggered by the disease. They developed a pilot study where Joy was asked to smell and identify t-shirts worn by Parkinsons patients.

The test involved six t-shirts worn by Parkinsons patients and six from a control group. Joy correctly identified the six from the patient group. She also identified one from the control group. However, eight months later, that individual got in touch with Tilo to reveal that he too had subsequently been diagnosed with Parkinsons.

This extraordinary finding indicated that it might be possible to develop a test that could provide an early diagnosis of the disease.

Our early results suggested that there may be a distinctive scent that is unique to people with Parkinsons, Tilo explains. If we could identify the molecules responsible for this, it could help us develop ways of detecting and monitoring the condition.

Meet The Woman Who Can Smell Parkinson’s

A Parkinson’s UK-funded study, inspired by a woman’s ability to smell the condition, has resulted in the discovery of 10 molecules which could lead to the first diagnostic test for Parkinson’s.

The story of Joy Milne who featured in the BBC Scotland documentary The Woman Who Can Smell Parkinson’s is testament to the role that people who live with a health condition can have in inspiring scientists to make research breakthroughs.

Researchers at Manchester University first thought Parkinson’s might have a discernible odour when Joy Milne of Perth, Scotland, said she had noticed a change in the way her husband smelled 6 years before he was diagnosed with the condition.

Joy said she noticed the change years before her husband developed any motor symptoms, pointing to the possibility to diagnose Parkinson’s earlier than is currently known.

Tanith Muller, Parliamentary and Campaigns Manager at Parkinsons UK in Scotland said:

“This whole story started with Joy coming along to a Parkinson’s UK event. During a question and answer session, her claim to be able to smell Parkinsons caught the attention of Parkinson’s UK supported researcher Dr Tilo Kunath at the University of Edinburgh and he investigated further.

“Tilo’s initial findings that Joy could indeed smell Parkinson’s then led to Parkinson’s UK funding further research into whether Parkinsons had its own aroma.”

Dr Arthur Roach, Director of Research at Parkinson’s UK, added:

Tanith Muller concludes:

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Whats Next For The Diagnosis Of Parkinsons

And next? Following this, we plan to address how patients log their symptoms on an ongoing basis. The potential impact of creating this process is huge. At present, there is no test which can conclusively show that you have Parkinsons disease. As a result of this, a diagnosis can take many years. However, it is so important to identify Parkinsons as early as possible in order to slow down its progression.

This reminds us of the importance of the work we are collaborating on. A successful digital solution could mean that in a few years time we will have gathered the biggest Parkinsons directory of research globally which could then lead us to a point where we could have a diagnostic test for Parkinsons that is quick and easy and produces much better patient outcomes.

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Woman who can smell Parkinson

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The Woman Who Can Smell Parkinsons

Joy Milnes husband Les was diagnosed with Parkinsons at the age of 45. However, it had been 12 years earlier when Joy had first noticed that something was different about him.

Joy has a rare condition called hereditary hypersomnia that gives her a heightened sense of smell. When Les was 33, she noticed that he had started to develop an odour, which she described as a subtle, musky smell.

She also noticed the same distinct smell when attending meetings organised by the charity Parkinsons UK. It was at this point that she was able to link the smell to the disease.

As both Les and Joy had a background in medicine, they knew this finding was significant. It was Les who then chose for them to approach Tilo, feeling that his interaction and close work with the Parkinsons community would stir his curiosity.

On 19 April 2012, at a Parkinsons UK meeting hosted by Tilo at the Centre for Regenerative Medicine, Joy took her opportunity to ask him why smell couldnt be used to diagnose Parkinsons.

This question and Joys super smeller abilities would soon go on to make headlines around the world.

Progress Towards A Skin Swab Test

These early findings were exciting and encouraging. The scientists knew that if they were able to identify a unique chemical signature in the skin linked to Parkinsons, they may eventually be able to diagnose the condition from simple skin swabs.

There is currently no definitive test for Parkinsons disease, with diagnosis based on a patients symptoms and medical history, a process that can take several years. The development of a test like this would therefore be a game-changer for the Parkinsons community.

With Joys help, the research team, now led by Perdita at the University of Manchester, continued to make progress. In 2019, they announced a major breakthrough the discovery of chemicals enriched in skin swabs from people with Parkinsons.

This key discovery led to further research to profile the complex chemical signature in sebum of people with Parkinsons. Through this work, scientists found subtle but fundamental changes as the condition progressed.

This meant that a skin swab could potentially not only be used to diagnose Parkinsons, but could also be used to monitor the development of the condition.

Professor Perdita Barran said: We believe that our results are an extremely encouraging step towards tests that could be used to help diagnose and monitor Parkinsons. Not only is the test quick, simple and painless but it should also be extremely cost-effective because it uses existing technology that is already widely available.

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Woman Who Can Smell Parkinsons Disease In Patients Even Before Symptoms Appear May Help Researchers Develop New Clinical Laboratory Test

May 15, 2020 | Instruments & Equipment, Laboratory Instruments & Laboratory Equipment, Laboratory Management and Operations, Laboratory News, Laboratory Operations, Laboratory Pathology

She worked with researchers at the University of Manchester in England to identify volatile biomarkers for Parkinsons disease that may lead to first noninvasive screening

Clinical pathologists and medical laboratories are used to working with certain biological indicators that drive diagnostics and clinical laboratory testing. Mostly, those biomarkers are contained within various liquid samples, such as blood and urine. But what if a persons odor could accurately predict risk for certain diseases as well?

Far-fetched? Thats what Parkinsons researcher Tilo Kunath, PhD, first thought when he was contacted by a woman who claimed she could smell Parkinsons disease coming from her husband. Kunath is Group Leader, Reader in Regenerative Neurobiology, at the Center for Regenerative Medicine at the University of Edinburgh, and head of the Tilo Kunath Research Group, which focuses on how the protein, alpha-synuclein, causes degeneration of neurons in Parkinsons patients, as well as on producing a cell-based therapy for Parkinsons disease.

Joy Milne, a retired nurse from Perth, Scotland, is the women whose heightened sense of smell enabled her to detect her husbands Parkinsons a decade before he was diagnosed with the disease.

Dogs Can Do It, Why Not Humans?

Andrea Downing Peck

Discovering The Smell Of Parkinsons

The woman who can smell Parkinson’s disease – BBC News

In 2012, stem cell biologist Dr Tilo Kunath had just finished a public talk about his research on Parkinsons disease when he was asked a surprising question Why arent you using smell to detect Parkinsons? Nine years on, this simple question has led to ground-breaking research into new ways to detect this devastating disease.

By Ellie Roger, Communication and Engagement Officer, Centre for Regenerative Medicine, Institute for Regeneration and Repair

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Can Joy Milne Help Find A Cure

Around four years before his diagnosis, Leslie Milne’s right hand began to tremble. He initially tried to hide the affliction from his wife by keeping his hand in his pocket, but his colleagues noticed and thought that he was drinking too much. When Joy noticed as well, her first thought was that he had a brain tumor. On the day before his 45th birthday, she took him to the doctor who diagnosed Parkinson’s.

The Milnes knew that things would get worse, but at least they now knew what they were dealing with. Joy Milne began keeping a journal.

In the times of James Parkinson, people with motoric symptoms tended to survive for only a few years. “As the debility increases and the influence of the will over the muscles fades away, the tremulous agitation becomes more vehement,” Parkinson wrote in 1817. “It now seldom leaves him for a moment but even when exhausted nature seizes a small portion of sleep, the motion becomes so violent as not only to shake the bed-hangings, but even the floor and sashes of the room. () The urine and faeces are passed involuntarily and at the last, constant sleepiness, with slight delirium, and other marks of extreme exhaustion, announce the wished-for release.”

Myriad Side Effects

A page of Joy Milne’s journal

On his 50th birthday, Les showed up to his own party wearing underwear printed with the Scottish flag. He wasn’t wearing trousers. He mixed himself a Bacardi & cola and sat down on the lap of a female colleague.

‘We Have to Be Sure’

Joy Milne Says She Smelled Parkinson’s Disease In 8 Patients: Here’s What Science Has To Say About That

We often come across stories about dogs that can sniff out chronic diseases among people using nothing except for their noses. This makes sense considering mans best friends remarkable sense of smell is 100 times better than a humans due to more than 220 olfactory receptors found in their noses. So then whats the deal with Scotland native Joy Milne, who has already sniffed out seven cases of Parkinsons disease, not including her late husbands?

When Milnes husband, Les, started emitting a musty odor, she didnt think much of it. The 65-year-old grandmother said she has always possessed a keen sense of smell. Les, who worked as an anesthesiologist at the time, worked long hours and interacted with a lot of people, so it was possible a harder schedule meant more sweat and less shower time. Six years after Milne began smelling the scent Les was unfortunately diagnosed with Parkinsons.

“His smell changed and it seemed difficult to describe,” Milne told BBC. “It wasn’t all of a sudden. It was very subtle a musky smell. I got an occasional smell.” It wasnt until she attended a charity meeting for Parkinson’s that Milne smelled the exact odor her husband had been emitting on another person diagnosed with Parkinson’s.

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The Woman Who Can Smell Parkinson’s Disease

Meet the woman from Perth whose super sense of smell could change the way Parkinson’s disease is diagnosed.

Joy Milne’s husband, Les, died in June, aged 65.

He worked as a consultant anaesthetist before being diagnosed with Parkinson’s at the age of 45.

One in 500 people in the UK has Parkinson’s – that is 127,000 across Britain.

It can leave people struggling to walk, speak and sleep. There is no cure and no definitive diagnostic test.

Joy noticed something had changed with her husband long before he was diagnosed – six years before.

She says: “His smell changed and it seemed difficult to describe. It wasn’t all of a sudden. It was very subtle – a musky smell.

“I got an occasional smell.”

Joy only linked this odour to Parkinson’s after joining the charity Parkinson’s UK and meeting people with the same distinct odour.

Edinburgh University decided to test her – and she was very accurate.

Dr Tilo Kunath, a Parkinson’s UK fellow at the school of biological sciences at Edinburgh University, was one of the first scientists Joy spoke to.

He says: “The first time we tested Joy we recruited six people with Parkinson’s and six without.

“We had them wear a t-shirt for a day then retrieved the t-shirts, bagged them and coded them.

“Her job was to tell us who had Parkinson’s and who didn’t.

“Her accuracy was 11 out of 12. We were quite impressed.”

Dr Kunath adds: “She got the six Parkinson’s but then she was adamant one of the ‘control’ subjects had Parkinson’s.

Who Is Joy Milne The Super Smeller

Meet the woman who can smell Parkinson

For Joy Milne, a visit to a Parkinsons disease support group meeting with her husband Les proved to be a life-changing moment. The retired nurse noticed that all the patients gave off the same musky odour she had first detected on Les more than a decade before he was diagnosed at the age of 45.

She mentioned her discovery to Tilo Kunath, a neurobiologist at Edinburgh University who studies the neurodegenerative disorder. His interest piqued, Kunath had Milne sniff T-shirts worn by either healthy people or those with Parkinsons. She identified all those worn by the patients and said one more T-shirt bore the same scent. Eight months later, the wearer was diagnosed with the disease.

For the past four years, she has worked with scientists at Manchester University. It is hoped that the research part-funded by Parkinsons UK will lead to the development of an early diagnosis test.

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What Does Disease Smell Like

Joy Milne is a super-smeller. These people have a superior sense of smell and are sometimes sought after by perfume or wine manufacturers.

For Joy, however, her sensitive nose meant that she detected an unusual odour on her husband, Les. Initially she thought that perhaps he wasnt showering enough, but 12 years later he was diagnosed with Parkinsons disease. She only made the connection between the condition and the aroma after noticing the same smell on people at a Parkinsons disease support group.

Read more about smelling disease:

She has since worked with scientists at the University of Manchester to identify the chemicals underlying what she says is the characteristic smell of the condition, which could help lead to earlier diagnosis. Joy is now the linchpin for ongoing smell research. This is what she says about some common diseases:

This Woman Can Actually Smell Parkinson’s Disease Before It’s Diagnosed

At the moment, there’s no definitive diagnostic test for Parkinson’s. Soon, that might change thanks to a woman called Joy Milne she can sniff out the brain disease on someone before the symptoms appear.

It sounds too bizarre to be true, but Joy noticed the “musky” smell on her husband 10 years before he was diagnosed with Parkinson’s by doctors. When she went to a meeting with other people with the condition, she realised the smell and the disease were linked.

Since then, scientists have been working with Joy to try and identify what exactly she was smelling. It seems to be linked to sebum – the oily secretion that helps keep our skin and hair naturally moisturised, and which can be produced more in people with Parkinson’s.

While it was already known that Parkinson’s leads to increased sebum production, the researchers wanted to know exactly which biomarkers were giving off the scent Joy was picking up, so they used mass spectrometry chemical analysis to extract individual compounds.

“We designed some experiments to mimic what Joy does, to use a mass spectrometer to do what Joy can do when she smells these things on people with Parkinson’s,” one of the team, Perdita Barran from the University of Manchester in the UK, told the BBC.

The presence of these molecular compounds is linked to the shifting levels of neurotransmitters in people with Parkinson’s those chemical messengers that help neurons connect and control our thoughts and movement.

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