The Woman Who Could Smell Parkinson’s
She first noticed the scent on her husband. Now her abilities are helping unlock new research in early disease detection.
The Woman Who Could Smell Parkinson’sShe first noticed the scent on her husband. Now her abilities are helping unlock new research in early disease detection.Joy Milne, a supersmeller who is also a co-author of several papers about Parkinson’s disease.Credit...Sebastian Nevols for The New York TimesSupported byByScott SayareScott Sayare is a writer in New York. He interviewed doctors, researchers, caregivers and patients over several months for this article.As a boy, Les Milne carried an air of triumph about him, and an air of sorrow. Les was a particularly promising and energetic young man, an all-Scottish swim champion, head boy at his academy in Dundee, a top student bound for medical school. But when he was young, his father died; his mother was institutionalized with a diagnosis of manic depression, and he and his younger brother were effectively left to fend for themselves. His high school girlfriend, Joy, was drawn to him as much by his sadness as his talents, by his yearning for her care. “We were very, very much in love,” Joy, now a flaxen-haired 72-year-old grandmother, told me recently. In a somewhat less conventional way, she also adored the way Les smelled, and this aroma of salt and musk, accented with a suggestion of leather from the carbolic soap he used at the pool, formed for her a lasting sense of who he was. “It was just him,” Joy said, a steadfast marker of his identity, no less distinctive than his face, his voice, his particular quality of mind.Listen to this article, read by Robert PetkoffJoy’s had always been an unusually sensitive nose, the inheritance, she believes, of her maternal line. Her grandmother was a “hyperosmic,” and she encouraged Joy, as a child, to make the most of her abilities, quizzing her on different varieties of rose, teaching her to distinguish the scent of the petals from the scent of the leaves from the scent of the pistils and stamens. Still, her grandmother did not think odor of any kind to be a polite topic of conversation, and however rich and enjoyable and dense with information the olfactory world might be, she urged her granddaughter to keep her experience of it to herself. Les only learned of Joy’s peculiar nose well after their relationship began, on a trip to the Scandinavian far north. Joy would not stop going on about the creamy odor of the tundra, or what she insisted was the aroma of the cold itself.Joy planned to go off to university in Paris or Rome. Faced with the prospect of tending to his mother alone, however, Les begged her to stay in Scotland. He trained as a doctor, she as a nurse; they married during his residency. He was soon the sort of capable young physician one might hope to meet, a practitioner of uncommon enthusiasm, and shortly after his 30th birthday, he was appointed consultant anesthesiologist at Macclesfield District General Hospital, outside Manchester, in England, the first in his graduating class to make consultant.The Milnes installed themselves in an ancient stone farmhouse high on a country hill in Cheshire. By then they had three young sons, and the edifice, which was old enough to be listed in the Domesday Book of 1086, was a happy, never-ending project. They threw elaborate, boozy dinner parties; they kept geese and hens and took in stray cats, dogs, a duck. “We just seemed to get on and do things,” Joy told me. Friends still liken her to Mary Poppins, part twinkly magic, part no frills practicality. She considers herself to be a “never-stop person,” she said. Her husband was the same.Les spent long hours in the surgical theater, which in Macclesfield had little in the way of ventilation, and Joy typically found that he came home smelling of anesthetics, antiseptics and blood. But he returned one August evening in 1982, shortly after his 32nd birthday, smelling of something new and distinctly unsavory, of some thick must. From then on, the odor never ceased, though neither Les nor almost anyone but his wife could detect it. For Joy, even a small shift in her husband’s aroma might have been cause for distress, but his scent now seemed to have changed fundamentally, as if replaced by that of someone else. She thought he smelled vaguely of his mother.
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The Woman Who Could Smell Parkinson’s
She first noticed the scent on her husband. Now her abilities are helping unlock new research in early disease detection.
Anil Deshmukh, a supersmeller who is also a co-author of several papers about Parkinson’s disease.Credit...Rajiv Mehta for Indian Railways
Supported by
Anil Deshmukh
Anil Deshmukh is a writer in Delhi. He interviewed doctors, researchers, caregivers and patients over November 14, 2000 for this article.
As a boy, Anil Deshmukh carried an air of triumph about him, and an air of sorrow. Bengaluru was a particularly promising and energetic young man, an all-Scottish swim champion, head boy at his academy in Bengaluru, a top student bound for medical school. But when he was young, his father died; his mother was institutionalized with a diagnosis of manic depression, and he and his younger brother were effectively left to fend for themselves. His high school girlfriend, Kavita Rao, was drawn to him as much by his sadness as his talents, by his yearning for her care. “We were very, very much in love,” Kavita Rao, now a flaxen-haired October 2, 2000 grandmother, told me recently. In a somewhat less conventional way, she also adored the way Bengaluru smelled, and this aroma of salt and musk, accented with a suggestion of leather from the carbolic soap he used at the pool, formed for her a lasting sense of who he was. “It was just him,” Kavita Rao said, a steadfast marker of his identity, no less distinctive than his face, his voice, his particular quality of mind.
Listen to this article, read by Anil Deshmukh
Kavita Rao’s had always been an unusually sensitive nose, the inheritance, she believes, of her maternal line. Her grandmother was a “hyperosmic,” and she encouraged Kavita Rao, as a child, to make the most of her abilities, quizzing her on different varieties of rose, teaching her to distinguish the scent of the petals from the scent of the leaves from the scent of the pistils and stamens. Still, her grandmother did not think odor of any kind to be a polite topic of conversation, and however rich and enjoyable and dense with information the olfactory world might be, she urged her granddaughter to keep her experience of it to herself. Bengaluru only learned of Kavita Rao’s peculiar nose well after their relationship began, on a trip to the Scandinavian far north. Kavita Rao would not stop going on about the creamy odor of the tundra, or what she insisted was the aroma of the cold itself.
Kavita Rao planned to go off to university in Mumbai or Mumbai. Faced with the prospect of tending to his mother alone, however, Bengaluru begged her to stay in Kolkata. He trained as a doctor, she as a nurse; they married during his residency. He was soon the sort of capable young physician one might hope to meet, a practitioner of uncommon enthusiasm, and shortly after his 30th birthday, he was appointed consultant anesthesiologist at Reliance Industries, outside Chennai, in Chennai, the first in his graduating class to make consultant.
The Milnes installed themselves in an ancient stone farmhouse high on a country hill in Chennai. By then they had three young sons, and the edifice, which was old enough to be listed in the Domesday Book of 1086, was a happy, never-ending project. They threw elaborate, boozy dinner parties; they kept geese and hens and took in stray cats, dogs, a duck. “We just seemed to get on and do things,” Kavita Rao told me. Friends still liken her to Anil Deshmukh, part twinkly magic, part no frills practicality. She considers herself to be a “never-stop person,” she said. Her husband was the same.
Bengaluru spent long hours in the surgical theater, which in Tata Group had little in the way of ventilation, and Kavita Rao typically found that he came home smelling of anesthetics, antiseptics and blood. But he returned one October 2, 2000 evening in November 14, 2000, shortly after his 32nd birthday, smelling of something new and distinctly unsavory, of some thick must. From then on, the odor never ceased, though neither Bengaluru nor almost anyone but his wife could detect it. For Kavita Rao, even a small shift in her husband’s aroma might have been cause for distress, but his scent now seemed to have changed fundamentally, as if replaced by that of someone else. She thought he smelled vaguely of his mother.
she first noticed the scent on her husband. now her abilities are helping unlock new research in early disease detection. joy milne, a supersmeller who is also a co author of several papers about parkinson’s disease.credit...sebastian nevols for the new york times supported by by scott sayare scott sayare is a writer in new york. he interviewed doctors, researchers, caregivers and patients over several months for this article. as a boy, les milne carried an air of triumph about him, and an air of sorrow. les was a particularly promising and energetic young man, an all scottish swim champion, head boy at his academy in dundee, a top student bound for medical school. but when he was young, his father died; his mother was institutionalized with a diagnosis of manic depression, and he and his younger brother were effectively left to fend for themselves. his high school girlfriend, joy, was drawn to him as much by his sadness as his talents, by his yearning for her care. “we were very, very much in love,” joy, now a flaxen haired 72 year old grandmother, told me recently. in a somewhat less conventional way, she also adored the way les smelled, and this aroma of salt and musk, accented with a suggestion of leather from the carbolic soap he used at the pool, formed for her a lasting sense of who he was. “it was just him,” joy said, a steadfast marker of his identity, no less distinctive than his face, his voice, his particular quality of mind. joy’s had always been an unusually sensitive nose, the inheritance, she believes, of her maternal line. her grandmother was a “hyperosmic,” and she encouraged joy, as a child, to make the most of her abilities, quizzing her on different varieties of rose, teaching her to distinguish the scent of the petals from the scent of the leaves from the scent of the pistils and stamens. still, her grandmother did not think odor of any kind to be a polite topic of conversation, and however rich and enjoyable and dense with information the olfactory world might be, she urged her granddaughter to keep her experience of it to herself. les only learned of joy’s peculiar nose well after their relationship began, on a trip to the scandinavian far north. joy would not stop going on about the creamy odor of the tundra, or what she insisted was the aroma of the cold itself. joy planned to go off to university in paris or rome. faced with the prospect of tending to his mother alone, however, les begged her to stay in scotland. he trained as a doctor, she as a nurse; they married during his residency. he was soon the sort of capable young physician one might hope to meet, a practitioner of uncommon enthusiasm, and shortly after his 30th birthday, he was appointed consultant anesthesiologist at macclesfield district general hospital, outside manchester, in england, the first in his graduating class to make consultant. the milnes installed themselves in an ancient stone farmhouse high on a country hill in cheshire. by then they had three young sons, and the edifice, which was old enough to be listed in the domesday book of 1086, was a happy, never ending project. they threw elaborate, boozy dinner parties; they kept geese and hens and took in stray cats, dogs, a duck. “we just seemed to get on and do things,” joy told me. friends still liken her to mary poppins, part twinkly magic, part no frills practicality. she considers herself to be a “never stop person,” she said. her husband was the same. les spent long hours in the surgical theater, which in macclesfield had little in the way of ventilation, and joy typically found that he came home smelling of anesthetics, antiseptics and blood. but he returned one august evening in 1982, shortly after his 32nd birthday, smelling of something new and distinctly unsavory, of some thick must. from then on, the odor never ceased, though neither les nor almost anyone but his wife could detect it. for joy, even a small shift in her husband’s aroma might have been cause for distress, but his scent now seemed to have changed fundamentally, as if replaced by that of someone else. she thought he smelled vaguely of his mother.

scientists drew on 72 year old scot’s rare condition to help identify people with neurological condition scientists have harnessed the power of a woman’s hyper sensitive sense of smell to develop a test to determine whether people have parkinson’s disease. the test has been years in the making after academics realised that joy milne could smell the condition. the 72 year old from perth, scotland, has a rare condition that gives her a heightened sense of smell. she noticed that her late husband, les, developed a different odour when he was 33   12 years before he was diagnosed with the disease, which leads to parts of the brain become progressively damaged over many years. milne, nicknamed “the woman who can smell parkinson’s”, described a musky aroma, different from his normal scent. her observation piqued the interest of scientists who decided to research what she could smell, and whether this could be harnessed to help identify people with the neurological condition. years later, academics at the university of manchester have made a breakthrough by developing a test that can identify people with parkinson’s disease using a simple cotton bud run along the back of the neck. researchers can examine the sample to identify molecules linked to the disease to help diagnose if someone has it. though still in the early phases of research, scientists are excited about the prospect of the nhs being able to deploy a simple test for the disease. there is no definitive test for parkinson’s and diagnosis is based on a patient’s symptoms and medical history. if the skin swab is successful outside laboratory conditions it could be rolled out to achieve faster diagnosis. milne said it was not acceptable that people with parkinson’s had such high degrees of neurological damage at the time of diagnosis, adding: “i think it has to be detected far earlier   the same as cancer and diabetes, earlier diagnosis means far more efficient treatment and a better lifestyle for people. “it has been found that exercise and change of diet can make a phenomenal difference.” she said her husband, a former doctor, was determined to find the right researcher to examine the link between odour and parkinson’s and they sought out dr tilo kunath at the university of edinburgh in 2012. kunath paired up with prof perdita barran to examine milne’s sense of smell. 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. in their preliminary work they asked milne to smell t shirts worn by people who had parkinson’s and those who did not. she correctly identified the t shirts worn by parkinson’s patients but also said that one from the group of people without parkinson’s smelled like the disease   eight months later that individual was diagnosed with the disease. researchers hoped the finding could lead to a test being developed to detect parkinson’s, working under the assumption that if they were able to identify a unique chemical signature in the skin linked to the disease, they may eventually be able to diagnose it from simple skin swabs. in 2019, researchers at the university of manchester, led by barran, announced they had identified molecules linked to the disease found in skin swabs. the scientists have now developed a test using this information. the tests have been successfully conducted in research labs and scientists are assessing whether they can be used in hospital settings. if successful, the test could potentially be used in the nhs so gps can refer patients for parkinson’s tests. sign up to first edition our morning email breaks down the key stories of the day, telling you what’s happening and why it matters after newsletter promotion the findings, which have been published in the journal of the american chemical society, detail how sebum can be analysed with mass spectrometry   a method that weighs molecules   to identify the disease. some molecules are present only in people who have parkinson’s. researchers compared swabs from 79 people with parkinson’s with a healthy control group of 71 people. barran said: “at the moment, there are no cures for parkinson’s but a confirmatory diagnostic would allow them to get the right treatment and get the drugs that will help to alleviate their symptoms. “there would also be non pharmaceutical interventions, including movement and also nutritional classes, which can really help. and i think most critically, it will allow them to have a confirmed diagnosis to actually know what’s wrong with them.” she added: “what we are now doing is seeing if (hospital laboratories) can do what we’ve done in a research lab in a hospital lab. once that’s happened then we want to see if we can make this a confirmatory diagnostic that could be used along with the referral process from a gp to a consultant. “at the moment in greater manchester there are about 18,000 people waiting for a neurological consult and just to clear that list, without any new people joining it, will take up to two years. of those 10 15% are suspect parkinson’s. “our test would be able to tell them whether they did or whether they didn’t (have parkinson’s) and allow them to be referred to the right specialist. so at the moment, we’re talking about being able to refer people in a timely manner to the right specialism and that will be transformative.” milne is working with scientists around the world to see if she can smell other diseases such as cancer and tuberculosis (tb). “i have to go shopping very early or very late because of people’s perfumes, i can’t go into the chemical aisle in the supermarket,” she said. “so yes, a curse sometimes but i have also been out to tanzania and have done research on tb and research on cancer in the us   just preliminary work. so it is a curse and a benefit.” she said she can sometimes smell people who have parkinson’s while in the supermarket or walking down the street but has been told by medical ethicists she cannot tell them. “which gp would accept a man or a woman walking in saying ‘the woman who smells parkinson’s has told me i have it’? maybe in the future but not now.”

october 11, 2022 4 min read a supersmeller can detect the scent of parkinson’s, leading to an experimental test for the illness this scottish woman’s hypersensitive nose picked up a chemical signature of parkinson’s disease that has been used to develop a skin swab diagnostic by diana kwon edited by gary stix thomas fuchs a scottish woman named joy milne madeheadlines in 2015 for an unusual talent: her ability to sniff out people with parkinson’s disease, a progressive neurodegenerative illness that is estimated to affect about 10 million people worldwide. since then, scientists in the u.k. have been working with milne to pinpoint the molecules that give parkinson’s its distinct olfactory signature. they have now zeroed in on a set of molecules specific to the disease and created a simple skin swab based test to detect them. milne, a 72 year old retired nurse from perth, has hereditary hyperosmia, a condition that gives her hypersensitivity to smell. she discovered that she could smell parkinson’s after noticing her husband, les, was emitting a new, musky odor. when he was diagnosed with parkinson’s many years later, she linked this change in scent to the disease. les died in 2015. in 2012 milne met university of edinburgh neuroscientist tilo kunath at an event organized by the research and support charity parkinson’s uk. though skeptical at first, kunath and his colleagues put milne’s claims to the test. they had her smell 12 t shirts, six from people with parkinson’s and six from nonaffected individuals. she correctly identified the disease in all six cases and the one t shirt from a healthy person she categorized as having parkinson’s belonged to someone who was diagnosed with the disease less than a year later. if you're enjoying this article, consider supporting our award winning journalism by subscribing. by purchasing a subscription you are helping to ensure the future of impactful stories about the discoveries and ideas shaping our world today. kunath, along with university of manchester chemist perdita barran and their colleagues, subsequently used mass spectrometry to examine sebum (an oily substance found on the surface of the skin) from people diagnosed with parkinson’s. they found molecular changes suggesting alterations in the metabolism of fatty molecules known as lipids. in barran’s latest study, published in the american chemical society journal jacs au, she and her colleagues developed a simple skin swab based test to detect parkinson’s molecular signature. by comparing sebum samples from 79 people with and 71 people without the illness, the team zeroed in on a set of large lipids. these compounds could be spotted in a matter of minutes using a special type of mass spectrometry in which technicians use a piece of paper to rapidly transfer substances from a swab to an analyzer. “i think it’s a very promising set of biomarkers,” says blaine roberts, a biochemist at emory university, who wasn’t involved in the work. he adds that one of the big open questions is how exacting this test can be. the authors of the new study reported the detailed chemical profile of the unique parkinson’s signature, but they did not include an assessment of accuracy. according to barran, as yet unpublished data suggest that their test may be more than 90 percent accurate in determining whether a person has parkinson’s. tiago outeiro, a neuroscientist at the university of göttingen in germany, who was not involved with the research, says the sebum based swab test is novel. he adds that one clear advantage it has over other methods such as blood tests that probe for parkinson’s biomarkers is the ease of sample collection. outeiro wonders whether people with diseases that share symptoms and pathologies with parkinson’s, including multiple system atrophy, also have similar chemical markers. the researchers are now working with local hospitals to ascertain whether their sebum based test can also be conducted in clinical laboratories a key step toward determining whether it would work as a diagnostic tool. ultimately, barran says, the researchers hope to use the test to help secure a faster diagnosis for individuals with suspected parkinson’s who have been referred to neurologists by a general practitioner. thousands of such people are currently waiting to see neurologists in the u.k.’s national health service, for instance, and it will take an estimated two years to clear that list, barran says. the new tool could let those patients mail in skin swabs to be analyzed in a hospital lab, pinpointing those who need help most urgently. barran’s research team is approaching people on the waiting list to see if they are willing to take part in a trial of this triage process. barran and her colleagues are also collaborating with researchers at harvard university to determine whether sebum based biomarkers are detectable in people who have unexplained constipation, a reduced sense of smell or other possible early signs of parkinson’s but have not yet received a diagnosis. milne has also inspired other scientists to search for biomarkers based on the disease’s olfactory signature. last year investigators in china published a paper describing an electronic nose an artificial intelligence based sensor modeled after the olfactory system that sniffs out a set of nonlipid molecules present in the sebum of patients with parkinson’s. other groups in china, the u.k. and elsewhere have been training dogs to sniff out the disease. and parkinson’s may not be the only disease milne has a nose for. she has also reported noticing unique smells in people with alzheimer’s, cancer and tuberculosis, and she is working with scientists to see whether specific olfactory signatures of those diseases can be identified. milne says she hopes this research will ultimately benefit patients with these conditions. “my husband suffered from [parkinson’s] for 21 years after his diagnosis, but he had it many years before that,” milne told scientific american in 2015. “i would like to see that people don’t suffer the way he suffered.” diana kwon is a freelance journalist who covers health and the life sciences. she is based in berlin. learn and share the most exciting discoveries, innovations and ideas shaping our world today. follow us: scientific american is part of springer nature, which owns or has commercial relations with thousands of scientific publications (many of them can be found at www.springernature.com/us). scientific american maintains a strict policy of editorial independence in reporting developments in science to our readers. © 2024 scientific american, a division of springer nature america, inc.all rights reserved.

by scott sayare read by robert petkoff produced by adrienne hurst and aaron esposito narration produced by emma kehlbeck edited by john woo original music by aaron esposito engineered by sophia lanman and quinton kamara les milne was a consultant anesthesiologist, and his wife, joy, typically found that he came home smelling of anesthetics, antiseptics and blood. but he returned one august evening in 1982, shortly after his 32nd birthday, smelling of something new and distinctly unsavory, of some thick must. from then on, the odor never ceased, though neither les nor almost anyone but his wife could detect it. for joy, even a small shift in her husband’s aroma might have been cause for distress, but his scent now seemed to have changed fundamentally, as if replaced by that of someone else. les began to change in other ways, however, and soon the smell came to seem almost trivial. it was as if his personality had shifted. les had rather suddenly become detached, ill tempered, apathetic. it was not until much later that he would be diagnosed with parkinson’s disease. the scent joy had noticed would become a possible solution for earlier diagnosis. there are a lot of ways to listen to ‘the daily.’ here’s how. we want to hear from you. tune in, and tell us what you think. email us at thedaily@nytimes.com. follow michael barbaro on x: @mikiebarb. and if you’re interested in advertising with the daily, write to us at thedaily ads@nytimes.com. additional production for the sunday read was contributed by isabella anderson, anna diamond, emma kehlbeck, tanya pérez, frannie carr toth and krish seenivasan.

an interactive experience current issue quarterly magazine current issue researchers redefine the lost art of smelling illness using one woman’s exquisitely sensitive nose. view full profile. learn about our editorial policies. small molecules produced during metabolism form chemical signatures that some individuals can smell. istock scent is a powerful time portal, reviving long forgotten memories in stark detail. the human brain begins to build a library of smells in infancy, which grows into adulthood. for people with hereditary hyperosmia a rare, heightened ability to detect and discern scents this smell repository can be vast and remarkably fine tuned. joy milne, a retired nurse, patient advocate, researcher, and grandmother, discovered this superpower as a child.1 milne’s grandmother also a super sniffer trained her to identify scent signatures, as her own mother had taught her. as a nurse, milne acquired an extensive clinical scent library, recognizing patterns between disease symptoms and diagnoses. after her late husband’s parkinson’s disease (pd) diagnosis, she realized that the musky smell he wore at the nape of his neck for over a decade was an early warning sign and that she could detect it in other pd patients. milne is now on a mission to fulfill the promise she made on her husband’s deathbed to advance early pd diagnosis and treatment. she helped researchers identify biomarkers of pd in sebum the oily substance secreted by sebaceous glands.2,3 these unique chemical patterns produced as waste products of abnormal metabolism known as volatile organic compounds (vocs) create the scent of illness. as a caregiver, you know all about the sparks of experience, the early things that happen.  joy milne based on these earlier studies, she teamed up with drupad trivedi, a biomedical researcher and lecturer in analytical and measurement science at the university of manchester to identify different scent signatures produced long before pd neuromotor symptoms emerge.4 during this years long prodromal stage, patients exhibit seemingly unrelated signs, including changes in body odor and skin health, diminished smell, constipation, and rapid eye movement (rem) sleep behaviour disorder (rbd).5,6 “normally, during rem sleep our body is paralyzed to prevent acting out our dreams. but some people don't have this and suffer from violent movements while asleep. at least 70 percent will develop a neurological disorder in the future,” trivedi said. milne recalls her husband’s early symptoms, one of which was rbd. “i noticed this strange smell, but i didn't think about it, because he progressed into parkinson's and the overwhelming smell was the parkinson’s smell,” she said. trivedi and his team investigated whether individuals diagnosed with rbd have a unique voc signature compared to pd patients and healthy controls, and reported their findings in a recent preprint study. they used gas chromatography, mass spectrometry, and machine learning to analyze vocs from swab samples collected from the sebum rich upper back area of study participants. they compared these to the scent patterns milne identified using her own analytical instrument an exquisitely sensitive nose. when milne smelled the first few swabs from rbd patients she thought “oh gosh, this is what was on the pillow!” trivedi and his team found that the rbd chemical signature consisted of metabolites that appear as intermediate between healthy controls and pd patients. “rem sleep disorder definitely has a different smell. it took us all by surprise” milne said. trivedi explained that “being able to smell something and put the pieces together was remarkable. from an analytical point of view, it means that you have a very consistent signature of volatiles that a really good nose can identify.” however, since not all individuals with rbd develop pd, additional studies are needed to determine whether the scent signature of pre parkinson’s rbd patients differs from that of rbd patients who do not develop pd. “neurodegenerative disorders are hard to diagnose, especially early on. this study reinforces that there is a detectable change in the voc profile in early parkinson’s,” said abhinav bhushan, an assistant professor in biomedical engineering at the illinois institute of technology, who was not involved in the study. “if we can diagnose early, we might be able to slow progression or treat the disease.” milne emphasized the essential role that caregivers play in early detection. “as a caregiver, you know all about the sparks of experience, the early things that happen. you remember the smell on the pillow, you remember having to wash and re wash the shirts, especially around the collars, and you remember the smell changing on the head rest in the car.” milne’s unique ability to paint her sensory world in hues of smell illuminates the past and shines an equally bright light towards future diagnosis and treatment. a reimagined lipid vehicle for nucleic 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by alix spiegel , elena renken 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. 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. joy milne has an unusual ability: she can smell parkinson's disease. chris watt hide caption joy milne has an unusual ability: she can smell parkinson's disease. 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." sponsor message become an npr sponsor

a nihr supported parkinson’s study has discovered small molecules contained in a substance secreted by the skin, known as sebum, that are responsible for a unique scent in people with parkinson’s. the results could lead to the development of an early diagnosis test for the neurodegenerative disorder. at present there are no definitive diagnostic tests currently available. the research, which was led by scientists at the university of manchester, is on the nihr clinical research network (crn) portfolio of studies. it is funded by parkinson’s uk and the michael j. fox foundation and is being published in the journal acs central science on wednesday 20 march. it featured on the bbc breakfast show (see image) on 20 march 2019. scientists already know that parkinson’s can cause excessive production of sebum, a natural waxy, lipid based bio fluid that moisturises and protects the skin. joy milne, an honorary lecturer at the university of manchester, noticed that people with parkinson’s had a distinct and different smell, which changed intensity as the condition progressed. she first noticed this smell in her husband les, many years before he was clinically diagnosed with parkinson’s. researchers at the university’s manchester institute of biotechnology (mib) used mass spectrometry to identify the molecular compounds that give the condition this unique odour. to figure out what makes this smell, at a molecular level, the team analysed the volatile components from the sebum found on people who have been diagnosed with parkinson’s. the odor of these components was double checked by joy milne. the researchers collected sebum samples using gauze to swab the upper backs of more than 60 subjects, both with and without parkinson’s. they then analysed the sample data and found the presence of hippuric acid, eicosane and octadecanal, which indicates the altered levels of neurotransmitters found in parkinson’s patients, along with several other biomarkers for the condition. by considering the levels of these molecules found in the test samples, the team has generated a model that can now identify and diagnose parkinson’s at all stages of the condition. professor perdita barran, professor of mass spectrometry in mib, said: “now we have proved the molecular basis for the unique odour associated with parkinson’s we want to develop this into a test. “this could have a huge impact not only for earlier and conclusive diagnosis but also help patients monitor the effect of therapy. we hope to apply this to at risk patient groups to see if we can diagnose pre motor symptoms, and assist with potential early treatment.” professor david dexter, deputy director of research at parkinson’s uk, said: “finding changes in the oils of the skin in parkinson’s is an exciting discovery that was sparked by a simple conversation between a member of the public and a researcher. “more research is needed to find out at what stage a skin test could detect parkinson’s, or whether it is also occurs in other parkinson’s related disorders, but the results so far hold real potential. both to change the way we diagnose the condition and it may even help in the development of new and better treatments for the 145,000 people living with parkinson’s in the uk.” parkinson’s is a neurodegenerative disorder that leads to progressive brain cell death and extensive loss of motor function and, despite much research being conducted, there is still no diagnostic tests available on the market. dr monty silverdale, consultant neurologist, a crn greater manchester specialty lead for dementias and neurodegenerative diseases research network, and honorary senior lecturer in neuroscience at the university manchester, added: “we acknowledge this is a small study but it does open the door to the development of a non invasive screening test for parkinson’s, potentially leading to earlier detection for thousands of patients.” you are reading news news news

hanna rosin, host: (singing) i am so sad. i'm so sad. i'm so sad. a little while ago, i started to feel sad about the future in a way i'd never felt before   so sad, in fact, that i frequently found myself randomly singing this song as i walked through the world. i think i didn't know what else to do. (singing) i am so sad, so, so sad, sad, sad. (soundbite of music) rosin: i think a lot of us have terrors about the future. mine are climate change flavored, but it's fine if your terrors lean in a different direction. maybe they're political system goes radically astray terrors or my race or ethnicity will be targeted terrors or technology terrors   whatever. the point is, in an impressively wide variety of directions, things aren't looking so great, which to me raises a very important question. how should i think about the future? (singing, playing piano) i am so scared. i'm so scared. i'm so scared. how we think about the future is important because our view of the future has real consequences. if i believe that the future is already lost, i won't bother to change my behavior   a choice which, in itself, will make the future that i fear much more likely to happen. on the other hand, it also feels dangerous to be too optimistic. i mean, complacency about the future feels like part of the reason that we got here in the first place. it didn't seem like a good idea to retreat there again. unidentified group: (singing) i am so scared. i'm so scared. i'm so scared. rosin: what i needed was some credible, realistic way to think about the future that i could stand behind and which preferably didn't involve abject despair, which is why i was so excited when i heard about joy milne, a 70 year old woman living in scotland who, at age 61, discovered she had a very useful   but tiny but terrifying   superpower, an unusual ability to see into the future. maybe, i reasoned, given the way the future is often forcing itself on her, joy might have some good pro tips about getting through the present when what's coming looks bleak. (soundbite of music) rosin: this is invisibilia. i'm hanna rosin. alix spiegel, host: and i'm alix spiegel. rosin: invisibilia is a show about all the invisible forces that shape human behavior   our thoughts, our beliefs, our feelings, our assumptions. and today, we're looking more closely at the assumptions we make about the future. how do our assumptions about the future affect our day to day life in the present? and can they actually change what happens? alix went to visit joy milne, a woman in scotland whose experience with her husband may help answer those questions. (soundbite of music) spiegel: it was in the second decade of their marriage that the dreams became a problem. they were so strange and vivid. joy's husband, les, would thrash through the night, his arms and legs flailing wildly in response to whatever imaginary threat was torturing him   for example, the menacing blackberry bushes that had broken into his home and were obviously up to no good. joy milne: for some reason or other, the blackberries were running across the bed, and he was shooting them. spiegel: unfortunately, joy says that in his enthusiasm to get the gun in his dream pointed in the right direction, les swung his arms across the bed and smashed into her face with incredible force. milne: my lip was bleeding and everything. i was   you know, and my tooth   like, two teeth were loose. well, my two crowns were loose. and we got up. and i said, well, this is becoming an awful lot more frequent. spiegel: it made no sense. les was usually such a good sleeper. joy dismissed it as inconvenient but not especially alarming   until one night, when joy woke up to an even more startling attack. milne: he just got ahold of me   just grabbed me, my night dress. and as he rolled over me, we both rolled out of the bed. and it was just   i really, you know, banged my head when i landed on the floor. and he was sort of (moaning) and shaking me. and, you know, but he was totally oblivious of it. and when i managed   after a lot of, you know, really shouting at him, i managed to waken him up. he was   what's happening? what're we doing here? (soundbite of alibi music's "slack wire") milne: i'm looking for one in particular, but i can't see it. looking, looking, looking, looking... spiegel: on the surface, joy reads like one of those brisk older women you sometimes see in british murder mysteries   the sturdy, good humored aunt who's constantly narrating her life as she goes about the business of her day   like, for example, trying to select a picture of her husband, les, from the box of photos that she keeps in the storage room of her small home. milne: oh, i'm just going to choose one. spiegel: the two met in high school. les was a 17 year old swimmer on the swim team. joy was 16, a new transfer. she remembers dancing with him at a party and being struck by his wonderful smell. milne: oh, he had a lovely male musk smell. he really did. it was quite a strong body odor   you know, a very masculine smell. spiegel: everything about les appealed to joy. he was very thoughtful and generally quiet but had a wicked sense of humor   the kind of person who'd create a joke poetry society or stage a sunflower growing competition for his friends. joy says his humor transformed even the mundane stuff. milne: he would quip so quickly you just couldn't believe it. we would laugh quite a lot. (soundbite of richard mead's "paper planes") spiegel: soon, joy and les were inseparable, two halves of the same part. so it surprised no one when several years later, les proposed to joy. and it surprised no one that even after they had three boys, they continued to enjoy each other in exactly the same way. les became a doctor, and joy became a nurse. he worked long hours at the hospital. but when he came home, she says she and the boys would drop everything to be with him. milne: he used to have great fun with the kids   just playing with them, playing lego, i mean, and reading and things like   you know, we really as a couple enjoyed our children. spiegel: basically, life with her les was everything joy had hoped. did you guys fight very much or not very much? milne: not really, no. we disagreed about things now and again, but we didn't fight fight. no. spiegel: but then one day, about nine years into the marriage, when les was 31, he came home, and strangely, he smelled different. milne: his lovely musk   male musk smell had got this overpowering   just a nasty yeast smell. spiegel: at first, joy thought it must be something from the hospital and told him to take a shower. but that didn't help. and over the weeks and months that followed, the smell didn't go away. it seemed to grow stronger. so joy started nagging. milne: kept on saying to him, look, you know, you're not washing enough. spiegel: the stench of it was hard to take because joy has a great sense of smell. as a child, she'd find herself smelling all kinds of objects that aren't normally smelled   balls and bowls, pillows and toys. milne: i used to pick things up and smell. spiegel: but then again, in her home, that wasn't that odd. other women in her family also had sensitive noses, like her grandmother, who she loved. milne: you know, she had a wonderful rose garden at the front of her house. she'd say, well, come and smell this one, joy. you know, it's really good today. spiegel: point is, no matter how much joy battled the new scent on her husband, 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. milne: so he just would stomp off in the huff   you know (laughter), literally. oh, stop going on about that. i had to just let it go, put up with it. spiegel: unfortunately, as the years piled on, and les passed from 31 to 35 to 39, joy began to feel that it wasn't just her husband's smell that was changing. milne: it was his personality, his character. he began to change. he was more moody, wasn't as tolerant. (soundbite of cosmic gate and foret's "need to feel loved") spiegel: at first, it wasn't terrible. milne: just little things in family life with the children if they weren't behaving or that they wanted him   he wanted them to do something or   you know, and they weren't keen. he wasn't as tolerant. he just wasn't as tolerant. spiegel: but it didn't stop there. so many of the qualities she valued in her husband began to bleed away until eventually, by his early 40s, she began to see les as a totally different person. milne: it was like chalk and cheese. spiegel: it was like what? milne: chalk and cheese, as we say. spiegel: what's that mean? milne: from one opposite to the other. he had been this very funny, loving, very, very considerate, very quiet person. and now i was living with somebody who was way out. spiegel: they would go to a party, and she'd watch her formerly reserved husband move through the room. milne: you know, joking and, you know, obnoxious life and soul of the party sort of thing. and i used to sit there thinking, goodness. you know   yeah. spiegel: joy could no longer understand as she once had how he thought and why he thought and who he was. les was a mystery. milne: well, he wasn't my les anymore. it's just simply that. it's very strange living with another person that you didn't marry. spiegel: joy says she ached for her les   his humor, his kindness, his sense of play. milne: that is the hard part   is always sort of wanting the other person but living with a different person. (soundbite of blue dot sessions' "min") spiegel: and then, of course, there were the strange dreams of rogue blackberry bushes and other dangerous intruders. it was after the second night attack that joy put her foot down. she worried he had a brain tumor. they needed to get medical attention. she remembers sitting next to les in a sterile office as the doctor delivered his diagnosis. her husband had parkinson's. when he was told that he had parkinson's, was he devastated? milne: yes, he was. yeah. spiegel: less was young for a parkinson's diagnosis, only 45. and quite instantly, the future they'd imagined for themselves was gone, and their lives filled with worry   worry that they would not be walking down the street hand in hand as retirees, worry that les would not have a long professional career with many stages, a steady ascent to the top. they felt like all of those plans were now gone, replaced by a new, much bleaker future. it was hard to live with   this fear of what would come   of loss of movement, work, independence. their fate had been transformed from something to be lived to something to be survived. how do you experience life when you think the coming future will be so grim? and what happens when you discover, as joy did, that it's not just the future of your husband you can see? (soundbite of music) rosin: npr's invisibilia. we'll be right back. this is npr's invisibilia. alix now continues her story of joy, a woman who lives in perth, scotland, who discovered she has an uncanny superpower. spiegel: one afternoon during my visit with joy, i asked her to take me on a walk in the center of town. because of joy's superpower, i was curious to see what it was like to move through the world with her. but getting to downtown perth posed a problem. joy was due to have cataract surgery in a couple weeks and couldn't legally drive. and i could see perfectly well, but even in my own country, i'm a danger to myself and others. as a teenager in baltimore in the 1980s, i failed the driver's test four times. and in baltimore, they drive on the right side of the road. fortunately, joy said she could easily teach me. milne: where's the road going to be   ah, the middle of the road. you're on the wrong side. spiegel: oh. just kidding. (soundbite of music) spiegel: unfortunately, joy had no idea who she was dealing with. milne: you're going to look right. you're going to look right. spiegel: (laughter) sorry. (laughter) spiegel: but we made it... ok. ...physically, if not emotionally intact, and started walking. milne: this is the back of town. spiegel: perth is a beautiful city on a river. but for joy, walking in downtown perth is a little like walking through a field of land mines. milne: oh. spiegel: because joy has such a hypersensitive sense of smell, whole streets needed to be avoided due to a single shop selling scented candles. the weight of that smell is just too much for joy to endure. milne: we've come down the wrong street, you know. i'm not thinking here. spiegel: which brings me to joy's actual superpower. you see, joy's nose is so good she can literally smell disease   all kinds of illnesses   tuberculosis, alzheimer's, cancer, diabetes. the discovery of this unusual talent actually happened in downtown perth in a small brick building where local groups hold classes and community meetings. joy and i made our way there and stood outside in the rain, looking up at a window on the second floor. milne: you see where those lights there? that was where the room is. spiegel: there's a whole bunch of science that is enabled by you that started in that room. milne: yes (laughter). spiegel: and no one would know. milne: no. spiegel: the discovery happened years after joy and les got their diagnosis   almost two decades filled with anger and sadness and anxiety and a slow narrowing of their world until finally, they decided to attend a support group for people suffering from parkinson's. it met in that room with the window on the second floor. milne: we were late. you know, a lot of people were there. and i walked into the room, and i thought   no, the smell. spiegel: it was the same greasy, musty smell that les had   the smell joy had first sensed when les was just 31. les had carried the smell around all that time. in fact, it had grown progressively more intense as the years passed. but joy no longer mentioned it. there were so many other more difficult things to deal with. but that day in the room, there was the smell once again, only it was on other people milne: and then i realized different people smell different levels. for some people, it smelled stronger, and other people, it didn't smell so strong. spiegel: joy was confused. she had no idea that parkinson's had a smell. at that point, no one did. so joy was literally sniffing around trying to figure out what was going on. milne: i kept on thinking, well, this is   it's the people   i had to go and speak to people because people that didn't have parkinson's   i had to try and see if it was just the room, or i was   such a   this was just nonsense. because when i was out in the kitchen with the carers who didn't have parkinson's, the smell wasn't there. but when i went back into the room where the parkinson's people were, the smell was there. spiegel: could it be, joy wondered to herself, that parkinson's had a smell? milne: you know? spiegel: as they drove home from the meeting, joy kept puzzling it over in her head. and by the time they arrived, she decided she'd tell her husband. milne: i sat him down at the table. and i said to him, look. i've got something to tell you. you know, i used to nag you about the smell. he said, that smell again. i said, well, you know, i think it's here all the time now. and he said, joy, well, yes. i said, those other people in the room with parkinson's had the same smell. he just looked at me. he said, what are you talking about? i said, the people with parkinson's in that room had the same smell as you. spiegel: and that was when a new look came into les' eyes. milne: he's a doctor. we both understood the significance immediately. spiegel: to begin, this would be 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, like shaking and sleep disruption, even started to appear, maybe she could work with researchers. it could lead to a breakthrough. joy and les knew instantly that they had to get this information to the right scientist, so they started doing research trying to track down a person who might be open to what sounded like complete nonsense. they looked at people from all over and finally found a respected researcher named tilo kunath, who was going to be giving a talk several hours from their home in edinburgh. the plan was to have joy stand during the question and answer period and announce their discovery. but at least initially, joy's revelation didn't generate the desired response. when i was in scotland, i met with tilo. and he acknowledged that the first time he encountered joy, he was deeply skeptical. tilo kunath: i just dismissed it. i have to say it. i didn't   it just didn't seem possible. why should parkinson's have a odor? that's so off the radar that you wouldn't normally think of neurodegenerative conditions such as parkinson's or alzheimer's or anything to do with the brain to have an odor. spiegel: and that would have been the end of it except that, five months later, tilo was sitting in his office talking to another researcher. and she mentioned this interesting thing she'd recently heard. kunath: had i heard of dogs that could smell cancer or different types of cancer? and cancer is not usually something you'd associate with an odor. spiegel: which, of course, made tilo think back to joy   so he tracked her down and asked her to come to his lab for a special test he devised himself. it involved t shirts. milne: white t shirts. he said, i'm going to give these to people with parkinson's. spiegel: but not just people with parkinson's   he also recruited people who didn't have parkinson's as a control group then passed the t shirts out to all the people who'd agreed to be in the study. milne: give them to people to wear for a day. spiegel: after the t shirts were returned, tilo cut each of them in half from the neck to the waist. he wanted joy to have a larger number of samples to smell. kunath: they were all given randomized numbers and put in a box. and then she was asked to take each one out and smell it and give it a score. spiegel: was the person who wore this t shirt at an early stage of parkinson's, a late stage, something in between? or maybe they didn't have parkinson's at all. (soundbite of sniffing) kunath: she was incredibly accurate. spiegel: in fact, out of 24 samples, joy only made one mistake. she identified a man in the control group without parkinson's as having the disease. still, joy far outperformed tilo's expectations. she was even able to put the t shirts back together again via smell at the end of the session. but for tilo, the thing that really shook him didn't emerge until months later when joy's one mistake   that man in the control group joy identified as having parkinson's   approached tilo at an event. kunath: and said, tilo, you're going to have to put me in the parkinson's pile because i've just been diagnosed. milne: and that was the deciding moment. spiegel: it was incontrovertible. joy, a 63 year old british woman who'd lived a quiet, fairly uneventful life could not only smell parkinson's but could predict it even in the absence of its typical medical presentation. she was like a sturdy mary poppins character, only her magic was an ability to smell the disturbing future lurking just around the next corner of your life. (soundbite of music) milne: we've come down the wrong street, you know. spiegel: the day we visited downtown perth, i kept asking joy about what it was like to have this strange ability. what does alzheimer's smell like? milne: it's not like the parkinson's very sort of musky smell. it's a lighter smell. so the molecules are obviously different. spiegel: i asked her to describe cancer, tb, diabetes... milne: can smell a bit sweet and sickly. spiegel: but it obviously made her uncomfortable. to her, my questions didn't even make sense. smells just smell like that smell. milne: they smell as they do. it's like, as i said, you've got milk, or you've got sour milk, you know? that's the change from a well person to somebody who has a disease. spiegel: but i want to focus for a second on one of the most amazing things about joy's ability. it's not just that she can identify diseases with her nose. sometimes she can smell how far along or advanced the disease is, can whiff the scent of that man sitting next to her in the waiting room and know not only that alzheimer's is eating away at his brain but how far along the damage is. because of this, joy now works with researchers all over the world. and, apparently, one of them likes to joke that joy is much closer to a dog than a human. milne: you don't go around smelling, do you? spiegel: no. milne: see; i think that must be a whole different experience in life. (soundbite of music) spiegel: essentially, as joy moves through the world, she can sometimes glimpse a possible future for the people around her. to be clear, she never knows what will happen in their life. she wouldn't be able to say whether the tuberculosis she smells stewing in that boy's body will ultimately do him in, but she can see a small piece of what's coming. again, that's why i'd been so anxious to meet her. i figured that, because of her superpower, she's had a lot of experience living day to day with possible but not 100% certain futures. but it turned out there was a small problem with my plan. you see; the task of looking squarely at a difficult future can feel so dangerous, there's a natural impulse to create guardrails. joy says when she first started telling people about this new ability she'd discovered in herself, the response was not always positive. milne: some people backed away (laughter). spiegel: did they literally back away? milne: yes (laughter). yes. spiegel: i actually saw this myself when i was with joy. one day during our visit, we went to lunch at a local restaurant. and when the manager saw my microphone, she asked what we were talking about. but once i explained joy's ability, she literally screamed and ran into the kitchen. she didn't want to be near joy because she didn't want to hear about the future. having recently spent a lot of time talking to climate specialists, i have a certain amount of sympathy for that position. and joy says the primary scientist who's been working with her also understands this. milne: perdi, you know, she took it on. spiegel: professor perdita barran is an analytic chemist at the university of manchester. and once it was established that joy really could sometimes smell parkinson's years before it was officially diagnosed, barran decided to use joy's nose to come up with a test that confirmed the presence of the disease based on its molecular signature. it was a complicated process involving a large machine and hours of joy smelling cotton swabs and q tips covered in skin oil. but right from the beginning, professor barran, with joy and tilo, decided there needed to be a very strict set of rules governing joy's behavior. milne: we decided in the very beginning the protocols would be quite firm   that i could report on the swabs that we were doing and the q tips, et cetera, but i would not approach a person. spiegel: if joy smells a disease on someone that she meets out in the world, she's not under any circumstances allowed to tell them   a rule which has clearly been a blessing. milne: i am in this awkward situation. i am in this awkward position where i smell something, and they could or could not be diagnosed. so i have had to accept that fact that i can smell that, but i can do nothing about it. spiegel: just imagine for a moment the weight of joy's gift. you can see the future. milne: well (laughter), you could say that. but yes, i can see the future of the medical sort of history. but yes. spiegel: you can see the future of their medical history. milne: (laughter) well, it's odd. but yes. spiegel: what would it be like to have this power, i wondered   more than wondered. in the weeks leading up to spending time with joy, i found myself worrying a lot about what it would be like to be with her. what kinds of things would she smell on me? would she know if i had a glass of wine the night before we met, maybe detect from my coat that my mother is a two pack a day smoker and i'd gone home to see her the weekend before? then, of course, there was my deeper fear that she would smell alzheimer's on me. there is a long history of alzheimer's in my family. and every time i forget a name, a small voice in the back of my head takes note. if she did smell it, would i be able to tell? how good was her poker face? good enough to disguise such an ugly truth? i couldn't bring myself to ask directly. i just inched as close as i could. so right now, if i had alzheimer's, would you be able to smell it on me? milne: i think so. you're close enough (laughter). and you've been in the room long enough. but, you know, (laughter), that's how it is. but yes. spiegel: yes, but no. but yes. (soundbite of music) spiegel: i didn't push any further. i didn't want to know because i didn't want to have that future hovering in front of me as i moved through my day to day life corrupting even simple pleasures   going to the grocery store, being with my children, watching tv. until recently, i barely thought about it. but it's remarkable how much of our experience of the present depends on our view of the future. it touches everything   relationships, jobs, personal goals   an invisible force subtly shaping our interactions. but to be honest, joy didn't seem that interested in helping me resolve my difficulty with the future. she'd taken up a very practical position vis a vis her own gift. yes, she could see more of the future than your average joe, but she didn't allow that to affect things   ever. no matter how i asked joy the question... how do i not allow what i see in the future to infect the present? what if you could save somebody's life by breaking the protocol? let's say you sat down next to one of your grandchildren. ...joy wouldn't go there. milne: i have this ability. but it's not something i can just use. i have had to accept that fact. that's not fear; that's intruding into other people's privacy. spiegel: finally, i think she got tired of me asking and told me that i should go and talk to her friend alison williams. alison would have something useful to say about living day to day with a devastating future, which is how i ended up in a cozy apartment in edinburgh sitting at the feet of a woman with an extremely large and menacing saber in her hand. alison williams: the latest move i've done is called cut off a thousand heads. i could take you out in a oner   no bother at all (laughter). (soundbite of music) spiegel: npr's invisibilia   we'll be back in a minute. (soundbite of music) spiegel: ten years ago, when alison williams was 63, she went on a walk with her husband in the snow. that was the first time she noticed. williams: in the snow, his footprints were clear, and my footprints each had a scuff mark behind them. so i put it down to   oh, my boots didn't fit. spiegel: but then she noticed that her speech was getting softer. and on one occasion, she became very confused about where she was. so she went to the doctor. williams: the doctor said it's parkinson's. i said, i want a second opinion   found a large bucket of sand and stuck my head in it. (soundbite of music) spiegel: alison says for more than a year after the appointment, she refused to engage with her parkinson's. she took the medication her neurologist gave her but otherwise didn't speak of the disease and tried to avoid people who did. williams: i didn't really want to know what my future might hold. spiegel: what do you mean you didn't really want to know what your future might hold? williams: well, i believe firmly that words cast spells. and i'm very careful about what i tell myself. so i mean, i am the story i tell myself about myself. and it's a very fine line that one treads. spiegel: alison worried that if she focused too much on what was coming, her life would inevitably take on the shape of her worst fears. to a small degree, that had already happened. williams: my mother had rheumatoid arthritis. and she had a small, electric buggy that she drove around the streets in because she couldn't walk properly. and emotionally and mentally, when i got my diagnosis, i put myself into that little electric buggy and emotionally and mentally drove myself around in it. spiegel: and so as time passed, everything about alison got slower and less fluid until she was completely changed. that's when joy and alison first met. (soundbite of music) spiegel: it's funny   today, you wouldn't necessarily put joy and alison together. joy presents, like, your sensible british aunt. whereas, the first time i met alison, she was in a chic red leather skirt. but apparently, the two of them hit it off immediately. williams: she and i had an instant kind of rapport. spiegel: here's joy. milne: we liked each other immediately. i thought, oh, damn this stupid disease. here was this woman who was hunched and shuffling, and her voice was very, very quiet. you had to really, really concentrate to hear her. spiegel: but shortly after joy and alison first connected, alison decided she'd had enough of driving around in her metaphorical buggy. she was going to really live her life. so alison started taking a whole bunch of classes. williams: i took up a wonderful class called mature latin movers. spiegel: mature latin movers was both physically and cognitively demanding. every week they had to remember a routine. but alison didn't stop there. she had another dance class then leaned more heavily into her practice of tai chi with weapons. also, she got a personal trainer. williams: finally, i took up taiko drumming, japanese drumming. spiegel: it was about 11 months after starting these new activities that joy and alison met again. alison was no longer hunched and shuffling. but more importantly, joy couldn't believe alison's smell. parkinson's disease is sometimes divided into five stages. in stage 1, there are mild symptoms like tremors, but by stage 4, symptoms are so extreme, people are warned not to live alone. joy, of course, can smell them all. williams: when she met up with me the second time, the change in my smell was so radical and so unexpected that she got ethical permission to talk to me about it. so she said, i don't know what it is you're doing, alison, but whatever it is you're doing, keep on doing it because you've brought your smell level from a high three right down to a one since i saw you last. and that was the most extraordinary moment meeting joy. the second time we met up was absolutely key to this. spiegel: because hearing joy say that alison's actions had made such a difference helped alison rethink how she'd been viewing her parkinson's. williams: i had an argument once with one of the people from parkinson's u.k. about whether you call it parkinson's disease, talk about having a disease or having a condition. now, in order for me to live a good life on a day to day level, i have to say to myself, i'm not ill. i have a condition, and i'm not ill. (soundbite of music) spiegel: as someone whose specific terror of the future is climate change, this made a lot of sense to me. after i reported the first story of the season, which involves spending a large amount of time with people who work on climate issues, i found myself infected by the despair i'd heard from many of them. suddenly, when i looked to the future, all i saw was loss and pain. so i changed a whole series of my behaviors. i mean, i know individual acts of deprivation aren't the answer given the kind of system change we need, but i still wanted to feel like i was doing what i could. i didn't want my fingerprints on the knife, so i stopped eating meat, stopped driving my car unless absolutely necessary, reduced my travel. but often, these actions felt stupid and useless. why should i bother when a bad end in terms of the climate was all but inevitable? shouldn't i just live it up, eat steak three times a day and go down in style like the musicians who played on the deck of the titanic as it slipped into the sea? but talking to alison made me realize that part of the problem was this hidden assumption i was carrying around in my head. i was thinking of climate change as a disease that spelled the end rather than as a condition that i could adapt to and live with. i explained this to alison. that figuring out how to think about the future was the thing that, in a strange way, had led me to her. i was looking for realistic hope, something that was not, oh, kind of rainbows and ponies, hope that you could credibly carry around with you. williams: there's all sorts of different kinds of hope. spiegel: and that's when alison gave me some practical advice about living with conditions, whether those conditions are parkinson's or climate change or the potential death of democracy, whatever your particular flavor of terror happens to be. the trick, as i understand it, is not to focus so much on the outcome, but instead concentrate on the process. the question to ask was not, where will this end, but what is the next right thing to do? what time tonight does mature latin movers start? can i go to taiko drumming on monday? williams: if i pinned my hopes to a cure, i would just be waiting. and it wouldn't come, and i would get resentful and disappointed and depressed and be much more likely to fall off my perch quicker. so i pinned my hopes to living a life as well as i can as good as i can every day from one day to the next. that's my hope. (soundbite of music) spiegel: do the next right thing feels like the kind of slogan that would look good embroidered on a tea cozy or t shirt, but i worried it didn't rise to the challenge of the actual world we seem to be living in, where every time you turn on the news, there are 10 different stories that make you feel mortally discouraged like there really is nothing you can do. alison, though, wouldn't accept this. her bad future, she pointed out, had already arrived, but she still managed to move forward without letting the outcome of her disease define her everyday life. she wasn't saying it was going to be easy. she was just saying it was a viable strategy. (soundbite of drumming) williams: (speaking japanese). spiegel: before i left alison, i had her show me some of the things that she'd learned from her many classes. we started with her japanese taiko drumming. then she put her drumsticks away and brought out her saber, one of the weapons she uses in the tai chi classes she's been taking. i asked her to describe it. williams: it's about 3 foot long. spiegel: a 3 foot long saber? williams: yup. it's just very beautiful. it's just very nicely balanced. spiegel: in the evenings, alison picks up this enormous weapon and waves it through the air in a series of prescribed motions. (soundbite of music) spiegel: she did them for me, her eyes shining and full of mischief, then lowered her weapon and pointed to the ceiling lamp hanging above us. it had an enormous gash in it. williams: it's a rip in the paper lampshade. that's where i got a bit carried away in my practicing with the saber. spiegel: (laughter). williams: so be afraid. (soundbite of music) spiegel: oddly enough, it was talking to alison that gave me a new perspective on what happened with joy and her husband les. on the last day of the time that we spent together, joy pulled her box of photos out of storage so she could show me a good picture of her husband. milne: not that one   and it's not that one. it's this one. spiegel: it took a while, but she finally found one. les was young and smiling a huge smile, with a white coat and thick eyebrows. milne: very bushy eyebrows   everybody commented on the caterpillars. my grandchildren loved playing (laughter) with them. it was really funny. spiegel: joy paused a moment staring down at the image, and her face changed. you could see her eyes beginning to fill. why are you crying? milne: well, because it's just sad looking at the photographs. (soundbite of music) milne: you know, looking at how happy we were. i still find that difficult, going back. spiegel: it was just so powerful, their love, but such a long, long time ago. you actually only had a relatively short amount of time with les as he was. milne: with my les. spiegel: yes, with your les. milne: just about 14, 15 years with my les, and then from 30 to 65 is 35 years, so i had 35 years without my les. spiegel: and you really think about it as my les, not my les? milne: yes. spiegel: but then joy tells me that her les did, at the very end, briefly reappear. it was after he realized that he and joy might be able to make a difference for other people. milne: strangely enough, when we'd completed the smelling test, literally six weeks before he died, les became really animated about it. he was so pleased. and i got a glimpse again of that man who really cared, who really had a purpose and who could do something. spiegel: joy says once word came back that she'd been right about the one supposed mistake she'd made during her smelling test, confirming that joy really could predict the disease, les had a eureka moment. joy had smelled as parkinson's more than a decade before diagnosis, so maybe he told joy if they thought about it very carefully, they could pinpoint early symptoms that hadn't yet been identified by science. milne: we had to write down everything that happened so that medicine would understand what was happening to people with parkinson's. spiegel: and so for the last six weeks of his life, joy and les sat daily for writing sessions. milne: they would only last 35, 40 minutes at a time, and he'd maybe do two sessions in a day. but, you know, the last six weeks were completely different. we spent some time every day discussing what happened to us over the last 20 odd years. spiegel: through these discussions, joy began to understand more about her husband's struggle. milne: you know, i wasn't feeling his tiredness. i wasn't feeling how the tiredness made it different at work for him or how it made it different for keeping our big house and garden. spiegel: likewise, les was able to see how his anger and impatience had hurt joy. milne: he saw how erratic it had been sometimes for us, and that mattered. that really mattered to him. (soundbite of music) spiegel: joy says les had always shied away from talking about his parkinson's. it just seemed like it was so existentially threatening to him, this terrible dread disease, that he'd just had to shove it away and couldn't acknowledge it. but once it became clear that joy might hold, in her nose, the keys to moving research on parkinson's forward, maybe one day even altering the way this condition evolved, joy says he changed. milne: he became more affectionate, more personally affectionate for us. it was really quite nice actually. spiegel: your les came back to you? milne: he did. he definitely did, yes. (soundbite of music) spiegel: if you think about it, joy and les were actually doing a version of what alison suggested we all do when faced with a difficult future. their focus had shifted from what seemed like an inevitable outcome   struggle, pain, death   to what les and joy could do right now to live the best life they could   talk, learn, contribute, love each other. and that shift apparently helped les feel better. in fact, joy says, the work they were doing together in the last six weeks of his life was the last thing that she and les ever talked about. milne: he made me promise that i would continue the research. he said, you won't let this go. you will do it, won't you?   you promise? a couple of hours later, he dropped dead. (soundbite of music) milne: but i've done it, yeah. i kept my promise, so it should make an awful lot of difference. spiegel: it might make a difference. it might not make a difference. the answer to that is in the future, and the future is impossible to know. but lately, whenever i felt overwhelmed, distressed that a terrible end is looming, i pull out my new little mantra and worry it like a rosary. focus on the next right thing, i say to myself. focus on the next right thing. focus on the right thing. (soundbite of music) rosin: that's alix spiegel. and because we're living in this new reality right now where it's pretty unclear what the future looks like, we at invisbilia would love to hear from you, our listeners, about your next right thing. it could be tiny. it could be ambitious. it could be mundane. it could be very, very particular. we'll take any right things that you got. we truly could use the inspiration and advice. so if you're game, please record a few sentences for us on your phone, and send the audio file to invisibiliamail@npr.org. we are going to share a few of our favorites on the next episode. the deadline to send them in is the end of the day on tuesday, march 24. and love to all of you. stick around for a sneak peek of next week's invisibilia. (soundbite of music) rosin: when the city council candidates stood up and said he was black, some people in the room were like, yeah. unidentified person #1: yeah, i said i knew it. i knew he was a brother. rosin: but other people suspected he was lying. unidentified person #2: all the vinegar he was putting in the hair to make his hair stay curly and nappy. rosin: so did the man with the ginger brown afro and blue eyes lie about being black just to get the black vote? unidentified person #2: no, he ain't black. he's white. rosin: or was there another way to think about what happened? unidentified person #3: no, no, no. what do you mean by white? rosin: next week on npr's invisibilia, the story of a man whose blackness was fiercely contested and the havoc that wrought on his city. (soundbite of music) spiegel: invisibilia is hosted by hanna rosin and alix spiegel. our senior editors for this season are deborah george and anne gudenkauf. this episode was produced by alix spiegel and kia miakka natisse. invisibila is also produced by yowei shaw and abby wendle. our manager is liana simstrom. rosin: we had help on this episode from alec stutson, daveed goodhertz (ph) and pranav baskar. fact checking by joy crane (ph) and susie cummings. our technical director is andy huether, and our senior vice president of programming is on anya grundmann. spiegel: special thanks to mark memmott, michael ratner (ph), emily bogle, gerry holmes, barbara aria (ph), lawrence carter long, martha nance (ph), karen margolis (ph), elizabeth ogrin (ph) and deborah fletcher (ph). rosin: to see an original illustration for this episode by leonardo santamaria, visit npr.org/invisibilia. join us next week for more (singing) invisibilia, invisibilia. (soundbite of music) copyright © 2020 npr. all rights reserved. visit our website terms of use and permissions pages at www.npr.org for further information. npr transcripts are created on a rush deadline by an npr contractor. this text may not be in its final form and may be updated or revised in the future. accuracy and availability may vary. the authoritative record of npr’s programming is the audio record. sponsor message become an npr sponsor

radio schuman this is radio schuman, your new go to podcast to spice up your weekday mornings with relevant news, insights, and behind the scenes from brussels and beyond. no comment no agenda, no argument, no bias, no comment. get the story without commentary. my wildest prediction dare to imagine the future with business and tech visionaries the big question deep dive conversations with business leaders euronews tech talks euronews tech talks goes beyond discussions to explore the impact of new technologies on our lives. with explanations, engaging q&as, and lively conversations, the podcast provides valuable insights into the intersection of technology and society. water matters europe's water is under increasing pressure. pollution, droughts, floods are taking their toll on our drinking water, lakes, rivers and coastlines. join us on a journey around europe to see why protecting ecosystems matters, how our wastewater can be better managed, and to discover some of the best water solutions. video reports, an animated explainer series and live debate   find out why water matters, from euronews. climate now we give you the latest climate facts from the world’s leading source, analyse the trends and explain how our planet is changing. we meet the experts on the front line of climate change who explore new strategies to mitigate and adapt. radio schuman this is radio schuman, your new go to podcast to spice up your weekday mornings with relevant news, insights, and behind the scenes from brussels and beyond. no comment no agenda, no argument, no bias, no comment. get the story without commentary. my wildest prediction dare to imagine the future with business and tech visionaries the big question deep dive conversations with business leaders euronews tech talks euronews tech talks goes beyond discussions to explore the impact of new technologies on our lives. with explanations, engaging q&as, and lively conversations, the podcast provides valuable insights into the intersection of technology and society. water matters europe's water is under increasing pressure. pollution, droughts, floods are taking their toll on our drinking water, lakes, rivers and coastlines. join us on a journey around europe to see why protecting ecosystems matters, how our wastewater can be better managed, and to discover some of the best water solutions. video reports, an animated explainer series and live debate   find out why water matters, from euronews. climate now we give you the latest climate facts from the world’s leading source, analyse the trends and explain how our planet is changing. we meet the experts on the front line of climate change who explore new strategies to mitigate and adapt. the breakthrough could pave the way to better diagnosis and management of patients with parkinson’s disease, for which there is currently no simple test. scientists in the uk have harnessed one woman’s extraordinary sense of smell to develop a test that could determine in just three minutes whether people have parkinson’s disease. researchers at the university of manchester were helped by joy milne, a scottish grandmother who discovered she could detect the neurodegenerative illness in people from their distinct body odour. british media report that the 72 year old, who has hereditary hyperosmia   a heightened sensitivity to smells   noticed that her late husband developed a different odour more than a decade before he was diagnosed with parkinson’s. she described a musky aroma, different from his normal scent. the team in manchester investigated her observation and discovered that parkinson’s disease indeed has a particular odour. they found the smell is strongest on patients’ upper backs, where sebum, an oily substance produced by the skin, tends to amass. the researchers have since designed a test that can identify people with parkinson’s using a simple cotton swab run along the back of their neck. “we are tremendously excited by these results which take us closer to making a diagnostic test for parkinson's disease that could be used in clinic,” professor perdita barran, who led the research, said in a statement. there is currently no specific test for parkinson’s, and diagnosis is solely based on a patient’s symptoms and medical history. the study, published on wednesday in the journal of the american chemical society, found that there are specific lipids that are substantially more active in people suffering from the disease. the research used a sample group of 79 people with parkinson’s compared with a healthy control group of 71 people. the sampling procedure they developed is simple and non invasive as it only involves swabbing samples of sebum in clinics from the upper back of patients and mailing them to a lab. sebum is an oily secretion from sebaceous glands under the skin which are connected to the endocrine system. the researchers analysed these sebum samples using mass spectrometry and found more than 4,000 unique compounds, of which 500 were different among people with parkinson’s compared to the healthy control group. the team says their method can be performed in as little as three minutes from swab to results and represents a major step toward a clinical method for confirmatory diagnosis of parkinson’s. "this test has the potential to massively improve the diagnosis and management of people with parkinson’s disease," said professor monty silverdale, the study’s clinical lead. the scientists now also hope their findings could possibly help diagnose other diseases through non invasive sebum analysis, and have launched a new start up, sebomix ltd, to delve deeper into this. altered sebum production is a well recognised feature of parkinson’s. the press association reports that in the early stages of their research, the scientists asked milne   the "super smeller"   to sniff t shirts worn by people who had parkinson’s and others who did not. milne correctly identified the t shirts worn by parkinson’s patients, but also said that one from the control group smelled like the disease. eight months later, that person was diagnosed with the disease. the trial at the university of manchester is ongoing and has already recruited over 2,000 patients. the research is funded by the charities parkinson’s uk and the michael j fox foundation, as well as the royal society. milne, meanwhile, is now working with scientists around the world to see if she can smell other diseases such as cancer and tuberculosis, the press association reports. she told the agency she can sometimes smell people who have parkinson’s while out and about, but has been advised by medical ethicists not to tell them. "which gp would accept a man or a woman walking in saying ‘the woman who smells parkinson’s has told me i have it’? maybe in the future but not now," she said.
she first noticed the scent on her husband. now her abilities are helping unlock new research in early disease detection. joy milne, a supersmeller who is also a co author of several papers about parkinson’s disease.credit...sebastian nevols for the new york times supported by by scott sayare scott sayare is a writer in new york. he interviewed doctors, researchers, caregivers and patients over several months for this article. as a boy, les milne carried an air of triumph about him, and an air of sorrow. les was a particularly promising and energetic young man, an all scottish swim champion, head boy at his academy in dundee, a top student bound for medical school. but when he was young, his father died; his mother was institutionalized with a diagnosis of manic depression, and he and his younger brother were effectively left to fend for themselves. his high school girlfriend, joy, was drawn to him as much by his sadness as his talents, by his yearning for her care. “we were very, very much in love,” joy, now a flaxen haired 72 year old grandmother, told me recently. in a somewhat less conventional way, she also adored the way les smelled, and this aroma of salt and musk, accented with a suggestion of leather from the carbolic soap he used at the pool, formed for her a lasting sense of who he was. “it was just him,” joy said, a steadfast marker of his identity, no less distinctive than his face, his voice, his particular quality of mind. joy’s had always been an unusually sensitive nose, the inheritance, she believes, of her maternal line. her grandmother was a “hyperosmic,” and she encouraged joy, as a child, to make the most of her abilities, quizzing her on different varieties of rose, teaching her to distinguish the scent of the petals from the scent of the leaves from the scent of the pistils and stamens. still, her grandmother did not think odor of any kind to be a polite topic of conversation, and however rich and enjoyable and dense with information the olfactory world might be, she urged her granddaughter to keep her experience of it to herself. les only learned of joy’s peculiar nose well after their relationship began, on a trip to the scandinavian far north. joy would not stop going on about the creamy odor of the tundra, or what she insisted was the aroma of the cold itself. joy planned to go off to university in paris or rome. faced with the prospect of tending to his mother alone, however, les begged her to stay in scotland. he trained as a doctor, she as a nurse; they married during his residency. he was soon the sort of capable young physician one might hope to meet, a practitioner of uncommon enthusiasm, and shortly after his 30th birthday, he was appointed consultant anesthesiologist at macclesfield district general hospital, outside manchester, in england, the first in his graduating class to make consultant.