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’
Can A Dog Detect Parkinsons
A related news story is about the existence of programs which train dogs, well known to have much better senses of smell than humans, to smell PD. One such program, the first of its kind established in the US, is PADs for Parkinsons and operates in the Pacific Northwest. This program was established directly as a result of Joy Milnes story. The founders of the program hypothesized that if a human can detect PD, then dogs could almost certainly be trained to do so. A program called Medical Detection Dogs based in the United Kingdom trains dogs to detect odors of a number of diseases and is working with the research program at the University of Manchester described above. Other endeavors to train dogs to detect the odor of PD exist as well.
Accounts from PADs for Parkinsons and Medical Detection Dogs certainly support the idea that dogs can be trained to identify an odor in people who have been diagnosed with PD. For both these programs, the ultimate objective is not for trained dogs to diagnose PD by smelling bio-samples, but rather to identify the chemicals that the dogs are detecting so that an early diagnostic test can be developed.
Another related issue is whether dogs can distinguish PD from other neurological conditions. Currently, this can be a clinical conundrum and it is unclear if odor detection would be helpful here.
More research is necessary but its exciting and interesting to think that in the future, the odor of PD may turn into a biomarker for PD!
A New Way To Diagnose Parkinsons
The team is now working on training dogs to home in on the scents, as well as developing machinated diagnostic tests that could identify the presence of the tell-tale compounds, called biomarkers.
Milne isnt the only one who can detect the smell Barran says that many clinicians, even a hairdresser, have reached out to her to say they smell it too. Though Barran is a non-smeller a head injury left her own sniffer out of whack she says people always describe the smell in a similar way: Musky, reminiscent of how a beaver smells, yet unlike anything else.
Whether a new diagnostic test from the biomarkers comes from canines, super-smelling nurses or laboratory machines, the scientists goal is the same: Diagnose Parkinsons earlier possibly years earlier than current methods.
Theres not currently much or any early treatment for Parkinsons but, Barran points out, there was never a way to catch it early enough to develop early treatments. This might soon change, though, all thanks to a retiree with an exceptional nose.
Anna Funk is Assistant Editor at Discover. Follow her on Twitter .
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:
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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Engaging The Parkinsons Community
Having started his career as a developmental biologist, over time Tilos work became focused on Parkinsons disease a degenerative brain disorder for which there are currently no tests or cures. He now runs his own laboratory at the Universitys Centre for Regenerative Medicine, where he pioneers work into the development of cell replacement therapies to treat the disease.
It was as his research became more centred on Parkinsons that Tilo began to engage more with the Parkinsons community, regularly meeting with patient and charity groups to share his research. He soon found that this interaction was a two-way process and he was learning as much from them as they were from him.
Interacting with the patient community, for me, is an extremely important activity, Tilo says. Not only do I get massive enthusiasm and encouragement but I also get ideas for experiments. Through interaction with the patients, you really understand what would most benefit them going forward.
It was at one such meeting in Edinburgh that Tilo had a chance encounter with Joy Milne.
The Woman Who Smells Parkinsons Meets The Rats Who Smell Tb
| CEO APOPO
Joy Milne visits the APOPO training center in Tanzania.
Joy Milne is better known as The woman who can smell Parkinsons. In December, I saw Joys media appearances and learned about her collaboration with Edinburgh and Manchester Universities. At the 2018 Peoples Postcode Lottery annual Charity Gala in Edinburgh, I met her and Dr Tilo Kunath. I took the opportunity to invite Joy to visit APOPO in Tanzania.
There is currently no definitive test to make a diagnosis of Parkinson’s disease. Instead, a doctor takes a careful medical history and performs a thorough neurological examination, looking in particular for a combination of symptoms to be present. It remains an incredibly difficult disease to diagnose. Joys own husband contracted the disease but she only discovered she could smell it after she had joined a Parkinsons charity and met other people suffering from the disease around whom existed the same musky smell. Joy had actually noticed this odor around her husband years before he was diagnosed. By chance she mentioned this observation to scientists at a talk and they were fascinated.
Joys visit was extremely interesting and helpful and we hope to have her back in the near future so that we can direct her to a more focused study from which I believe we will learn a great deal. Science aside, Joy is a wonderful woman whose generosity with her time and knowledge made her an absolute pleasure to host.
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Parkinson’s Smell Test Explained By Science
A Scottish woman who astonished doctors with her ability to detect Parkinson’s disease through smell has helped scientists find what causes the odour.
Researchers in Manchester said they had identified the molecules on the skin linked to the smell and hope it could lead to early detection.
The study was inspired by Joy Milne, a 68-year-old retired nurse from Perth.
She first noticed the “musky” smell on her husband Les, who was years later diagnosed with Parkinson’s disease.
Joy, who has worked with the University of Manchester on the research for three years, has been named in a paper being published in the journal ACS Central Science.
She has also been made an honorary lecturer at the university because of her efforts to help identify the telltale smell.
The research revealed that a number of compounds, particularly hippuric acid, eicosane, and octadecanal, were found in higher than usual concentrations on the skin of Parkinson’s patients.
They are contained in sebum – the oily secretion that coats everybody’s skin, but which is often produced in greater quantity by people with Parkinson’s, making them more likely to develop a skin complaint called seborrheic dermatitis.
Lead author Prof Perdita Barran, from the school of chemistry at the University of Manchester, told BBC Scotland: “What we found are some compounds that are more present in people who have got Parkinson’s disease and the reason we’ve discovered them is because Joy Milne could smell a difference.
Researchers Investigate If Woman Can Smell Parkinson’s Disease
Joy Milne believed she could smell her husband’s Parkinson’s disease.
Parkinson’s Disease Sufferers Fight to Reclaim Their Lives With Boxing Therapy
— Researchers from the UK-based Parkinson’s Foundation are hoping that one woman’s powerful sense of smell will help them find a breakthrough for diagnosing patients with Parkinson’s disease.
Twenty years ago Joy Milne noticed a specific kind of smell whenever her husband Les Milne was around.
“Ive always had a keen sense of smell and I detected very early on that there was a very subtle change in how Les smelled,” she said in a statement Thursday. “Its hard to describe but it was a heavy, slightly musky aroma. I had no idea that this was unusual and hadnt been recognised before.”
When Les Milne was eventually diagnosed with Parkinson’s disease, Joy Milne didn’t realize the smell could have come from the illness until she saw multiple stories about diseases that have been identified by smell.
Joy Milne talked to researcher Dr. Tilo Kunath at the University of Edinburgh about the distinctive smell.
Tilo was interested and together we worked out ways to see if I could detect it from other people with Parkinsons and not just Les,” Milne said in her statement.
Milne said she’s excited about the possibility that the study could revolutionize how the disease is diagnosed and said her husband, who died this year, would be thrilled.
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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.
The Smell Of Parkinsons
The researchers initially assumed the smell had something to do with a persons sweat. We were trying to think about how we might be able to extract molecules from sweat we had students running up and down hills with gauze under their armpits, explains Barran.
But after initial trials with Milne and isolated sweat failed, they figured out that the scent was coming from the greasy sebum. Locating the origin of the scent allowed them to collect far more samples.
In the end, they were able to separate and identify the compounds found in sebum using whats called gas chromatography mass spectrometry . They used Milnes abilities to confirm the right combination of chemicals which, on a background of sebum-smell, make up the smell of Parkinsons.
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Passing The Smell Test
The T-shirt test was intriguing, but we have to take it with a scientific grain of salt. After all, there are lots of reasons people might share an odor.
In one notorious dead end, researchers were convinced there was a smell linked to schizophrenia, and a particular compound called TMHAsaid to smell like a goatwas identified and described in the prestigious journal Science. There was hope this chemical might even be the cause of schizophrenia, which would open up new avenues for treatment.
But in years of follow-up testing, the results couldnt be repeated. The TMHA schizotoxin went the way of tabletop nuclear fusion.
Barran is now at the Manchester Institute of Biotechnology, where shes applying the painstaking methods of chemistry to determine whether the Parkinsons smell is the real deal. She and her colleagues hope to develop a smell test for Parkinsons, one more rigorous and more practical than having Mrs. Milne smell all our T-shirts.
First, the team is working to chemically identify the molecules involved, which is harder than it looks on CSI. Of the thousands of known volatile compounds, many are not well characterized or data on them exists only within the fragrance industry.
Barran says shes up for the challengeeven though her own sense of smell was damaged in an accident and she cant smell the Parkinsons odor herself.
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.
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