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Woman who can smell Parkinson's disease describes moment she realised her husband had it

Woman who can smell Parkinson's disease describes moment she realised her husband had it

Sky News24-03-2025
A woman who can smell Parkinson's disease has described the moment she realised her husband had it.
Joy Milne told Sky's The UK Tonight With Sarah-Jane Mee about how her rare condition of hyperosmia, an incredibly sensitive sense of smell, helped her sniff out the disease in her late husband, Les.
She said: "Well, when you know, you're saying to your husband 'well you're smelling, you're not having enough showers and you're not brushing your teeth enough' and various other things, it doesn't go down well to start off with does it?"
"We continued like that for a while, and then I thought I've got to stop this, he's not terribly pleased, I'll just have to keep quiet."
But when Mr Milne was around 29 years old "there was a definite change, a very distinct change," she said.
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".
A neurologist eventually diagnosed Mr Milne with Parkinson's.
Ms Milne said she later went to a Parkinson's meeting in Perth, Scotland, and noticed "by the time I left, I could tell you who had Parkinson's, who did and who didn't".
"Now, there were over 30 people there. And, you know, I was quite able to do that."
She described her ability to Dr Tilo Kunath from Edinburgh University, who worked with Perdita Barran, professor of mass spectrometry at the University of Manchester, to devise an experiment to test Ms Milne's ability.
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 Ms Milne 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."
Asked how it feels to walk past someone who might smell like they're carrying the condition and whether it's difficult to carry on walking by, Ms Milne said: "It is very difficult, but I have signed a non-disclosure because it is unethical. It is and I can't do anything about that."
Pressed on whether she finds it a blessing or extremely difficult, she said: "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 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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Eight easy ways to get your kids into astronomy including best apps & budget gear to combat summer holiday boredom

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The eldest and second son respectively of a European father who practised medicine on Barbadian sugar plantations and owner of enslaved people, and a mother of African descent, the brothers made their home in the New Town's Frederick Street. But over the course a year both brothers were dead, victims of illnesses that ran rampant through Edinburgh's insanitary streets. Laid to rest one above the other in a grave in now lost cemetery grounds linked to South Leith Parish Church, their mixed heritage had not gone unnoticed. Line engraving of Edinburgh University buildings by W.H. Lizars, 1829, after T.H. Shepherd. 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However, the study stresses that further research would be necessary particularly as, so far at least, the brothers' graves have not been found. Read more by Sandra Dick: The study also points out that there remain unanswered questions and limited information surrounding what exactly happened to the brothers and exactly how their skulls ended up in the society's collection. However, the findings do offer a sobering glimpse into research culture at the time, the shocking theft within Britain of body parts of people of African descent for the purposes of racial science, and how the brothers – wealthy and privileged enough to afford to study at one of Britain's leading universities – should end up targets for followers of pseudoscience, some of whom may well have been their fellow students. 'The presence of the students' skulls in the collection provides a particularly shocking example of how students of colour experienced racism in 19th-century Britain,' the study adds. 'These two students were posthumous victims of the violent logics of a racial science practised by a significant minority of Edinburgh's citizens, students and medical professionals." (Image: Agency) Although there are still gaps that can't prove once and for all that the skulls are those of the brothers, the research has uncovered far more details than is usually known about remains within Edinburgh's Anatomical Museum. 'The majority of Indigenous human remains in museum stores are anonymous, which, as science rendered them as 'data' and 'research resource,' contributed to their objectification and commodification,' adds the study. The skulls formed part of a collection of around 400 acquired by the Edinburgh Phrenological Society, founded by two brothers: George Combe, a lawyer, and Andrew Combe, a doctor. Like the Richards brothers, they had also studied at the university, while a number of professors were also among the society's active members at the time of their deaths. By collecting skulls from around the world, the society explored theories surrounding phrenology, the long discredited science that claimed to read intellect and moral character from the contours of the skull. Their research, however, also became a vehicle for racial classification. Nineteenth century phrenologists believed the contours of the skull were linked to mental traits and characteristics (Image: Spurzheim, J. G. (1825) Public Domain/Wellcome Collection) To carry out their studies and comparisons, the society required a regular stream of skulls. They showed particular zeal for those they believed might support their theories – people of mixed heritage, such as the brothers, held particular interest. The society's collection is part of the anatomical museum's holdings, which includes approximately 1,500 skulls housed in its so-called 'Skull Room'. In recent years the university, which carried what's thought to be Scotland's first repatriation 75 years ago, has strived to identify and repatriate where possible. According to Dr Buck, records point to the brothers' their father, George Richards, also having been educated in the city before making his way to Barbados to practice medicine. There, he kept enslaved people, one of whom may well have been the brothers' own mother. His death, before February 1829, led to his estate, including enslaved people, being distributed to, among others, his sons. When George and Robert arrived in Edinburgh, the city was a magnet for aspiring scholars from across the empire eager to absorb its enlightenment values and learn at the side of some of the world's most revered professors. Their journey to Scotland would have been at great expense, probably paid for from their inheritance. They would have found themselves in a tightly packed city. And although they made their home in the less overcrowded New Town, the squalid living conditions and insanitary closes of the Old Town meant disease was rife. Divinity scholar Robert, 18, died first of typhoid fever in 1832. A few months later in March 1833, George, 21, succumbed to smallpox. 'Both were common afflictions in Edinburgh in the 1830s; indeed, the Richards brothers' deaths speak to a longer history of students who suffered and died from such diseases while undertaking their studies in Edinburgh,' states the report. University of Edinburgh Old College (Image: Jane Barlow/PA) Although there's no record of how the Phrenological Society acquired the skulls, the study points out the early 19th century was a time when growing interest in human anatomy inspired by advances in surgical methods had sparked demand for cadavers for medical research and education. With only executed murderers' corpses legally eligible for dissection, 'resurrectionists' or 'body-snatchers' roamed morgues and graveyards to supply a thriving black market. It adds: 'The crania of these two students were procured in the wake of nationwide graverobbing scandals, including the notorious Burke and Hare murders in Edinburgh in 1828. 'It is possible, of course, that the 'resurrection men' or 'body-snatchers' who supplied anatomists in Edinburgh with cadavers were called upon to acquire these students' crania.' Read more by Sandra Dick: The research adds: 'Given phrenologists' preoccupations with identifying racial differences through cranial analysis, it can be assumed that the racialisation of these two individuals as 'Mulatto' – a racial category that both fascinated and bewildered phrenologists – is what sparked an interest in their skulls. 'The individual(s) who stole the students' skulls and 'gifted' or sold them to the Phrenological Society were possibly driven by such motivations.' There remain gaps in records and confusing documents which mean the full story of the Richards brothers might never be told. "All we know is that some person or persons – fellow students, medical professionals, members of the Phrenological Society or grave-robbers acting on their behalf – were aware of the deaths of these two so-called 'Mulatto' students and perceived their skulls to be a valuable phrenological resource," the study adds. 'It is important to also reflect on the worlds in which racially minoritised students in the past lived and studied, including the racially motivated harms and indignities many will have faced in life and, as the story of these students' skulls would appear to indicate, in death.' A University of Edinburgh spokesperson said: "We take our duty of care very seriously and all remains in our collections are looked after with the upmost dignity and respect. "We have teams of experts responsible for ensuring our historically significant archives are preserved, as well as being accessible for non-invasive research projects and outreach initiatives that help to enhance our understanding of the world. "We are committed to learning lessons from our past, including addressing our colonial legacy and its contemporary impact. "We work with many communities around the world to engage with our collections and facilitate the return of remains and artefacts." Further details on University of Edinburgh repatriations can be found here

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