The nurse who can smell Parkinson’s | Joy Milne

Summary

Podcast Summary: The nurse who can smell Parkinson’s | Joy Milne

TED Talks Daily | April 6, 2026
Speaker: Joy Milne | Host: Elise Hu

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Overview

This episode features Joy Milne, a Scottish nurse with hereditary hyperosmia—a heightened sense of smell—who discovered she could detect Parkinson’s disease by scent years before traditional diagnosis methods. Joy recounts her personal journey, the life-changing implications for medical diagnostics, and her ongoing advocacy for earlier, non-invasive detection of Parkinson’s using smell-based methods.

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Key Discussion Points & Insights

Joy’s Extraordinary Sense of Smell and Its Origins

• Joy was born with a hyper-sensitive nose, a trait passed down from her mother and grandmother.
• She recalls her childhood confusion and social challenges, with her grandmother guiding her to both cherish and keep secret her unique ability.
  • Quote (Joy Milne, 03:55):

    “My mother had the nose, I have the nose now you hate. But don’t you worry, I will help you the way my mother helped me.”

• Joy learned to separate and identify different “volatiles”—the distinct scents emitted by people and everyday objects.
  • Quote (Joy Milne, 05:15):

    “My grandmother took a smell, she separated it and there was never one smell. It became volatiles.”

Nursing Career and the “Olfactory Library”

• Joy’s nursing work exposed her to numerous diseases and medical conditions, which she identified and cataloged in her “nursing bag of smells.”
• The hospital wards of the 1960s and 1970s provided a strong olfactory education due to the lack of disposables and more intense scents of disease.
  • Quote (Joy Milne, 06:15):

    “I had acquired a medical olfactory library. I called it my nursing bag of smells.”

Detecting Parkinson’s in Her Husband

• Joy noticed a change in her husband Les’s scent in his early 30s—years before he developed symptoms.
• Les was eventually diagnosed medically with Parkinson’s 12 years later; Joy had unknowingly detected it first by smell.
  • Quote (Joy Milne, 07:10):

    “Unknown to us, I had diagnosed him with a disease. My nose had diagnosed him. And it took medicine 12 years later to catch up.”

The “Aha” Moment and Scientific Collaboration

• At a Parkinson’s disease support meeting, Joy realized the same distinctive scent was present in others, allowing her to distinguish between those with and without the disease.
• With Les’s support, Joy approached Dr. Tilo Kunath at a Parkinson’s UK lecture, proposing research into Parkinson’s as a scent-based biomarker.
  • Quote (Joy Milne, 10:25):

    “Why are we not using the smell of Parkinson’s to diagnose it earlier?”

Scientific Validation and The T-Shirt Test

• Collaborating with researchers, a blind test was carried out using T-shirts worn by both Parkinson’s patients and healthy controls.
• Joy correctly identified all Parkinson’s cases and even “pre-diagnosed” one control who developed the disease six months later.
  • Memorable Moment (Joy Milne, 13:55):

    “I had one false positive. Oh no, said I. That person came back six months later and said, I have Parkinson’s.”

“Nose to Diagnose”: New Diagnostic Tests

• More than 2,000 participants have contributed samples, leading to the development of a non-invasive, swab-based test to detect Parkinson’s early using changes in skin sebum and scent.
  • Quote (Joy Milne, 15:30):

    “To translate the test they've designed a very simple test, non invasive swab or Q tip round the face or the back of the neck.”

Joy’s Ongoing Advocacy and Personal Drive

• Joy continues as an international advocate:
  • World Parkinson’s Coalition and Congress
  • Women’s Council and Young Onset Parkinson’s Disease (YOPD) Council
  • Co-creating courses for carers and healthcare professionals
• Joy’s promise to Les, who passed away after the initial trials, motivates her to advance early diagnosis for others.
  • Quote (Joy Milne, 18:50):

    “He made me promise that I would continue this research. And I now realize I have fulfilled my promise to him.”

Expanding Smell Detection to Animals

• Recent collaboration in Tanzania with Dr. Drupad Trivedi explores training African pouch rats to detect diseases, inspired by Joy’s olfactory findings.
  • Quote (Joy Milne, 19:35):

    “The rats are trained from being very young to actually detect landmines or TB. They are binary… We gave them urine, breathomics, sebum and sputum as well.”

The Broader Implications and Call to Action

• Early, noninvasive disease detection could vastly improve lives—especially for misdiagnosed women and young patients.
• Joy reflects on her grandmother’s advice and her mission to share her discovery with the world.
  • Quote (Joy Milne, 20:40):

    “What would my grandmother say it would be? Not ‘don’t tell anybody’—Go on, lass, tell the world!”

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Timestamps for Key Segments

• 00:16–01:02 — Personal Story: Smelling Parkinson’s in Her Husband
• 03:43–08:30 — Childhood, Family Heritage, and Nursing Career
• 09:20–11:45 — First Parkinson’s Meeting and Realization
• 12:30–15:10 — Scientific Collaboration and the T-shirt Smell Test
• 15:10–17:01 — “Nose to Diagnose” Research Impact and Non-Invasive Test
• 17:01–18:50 — Advocacy, Support Groups, and Personal Motivation
• 18:51–20:46 — African Pouch Rats, Expanding the Research, Broader Impact

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Notable Quotes

• On inherited ability:

  “People dinna smell the way we can. My mother had the nose, I have the nose now you hate.”
  (Joy Milne, 04:12)

• On first smelling Parkinson’s in Les:

  “By the time he was 33, this smell was his dominant smell. But unknown to us, I had diagnosed him with a disease. My nose had diagnosed him and it took medicine 12 years later to catch up.”
  (Joy Milne, 07:05)

• On advancing diagnostic testing:

  “We have done over 2,000 participant samples... developing a fast five-minute diagnostic test.”
  (Joy Milne, 15:50)

• On her purpose and drive:

  “He made me promise that I would continue this research. And I now realize I have fulfilled my promise to him.”
  (Joy Milne, 18:50)

• On breaking the silence:

  “What would my grandmother say… Not ‘don’t tell anybody’—Go on, lass, tell the world!”
  (Joy Milne, 20:40)

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Memorable Moments

• Realization that she could smell Parkinson’s before doctors could diagnose it, leading to a paradigm-shifting collaboration.
• Empathetic, heartfelt description of her partnership with Les and the “promise” that propels her advocacy.
• The proof-of-concept “false positive” who later developed Parkinson’s, cementing the value of olfactory detection.
• Expansion to training animals for disease detection, hinting at a future where such tests are scalable and accessible globally.

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Conclusion

Joy Milne’s story is a powerful testament to the overlooked senses in medicine, the importance of curiosity and persistence, and the deeply human experiences at the root of scientific progress. Her journey illustrates how unique personal abilities, combined with scientific rigor, can create breakthroughs for entire communities—turning individual perception into a public good.

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For further information on this topic, visit: TED curation guidelines

Transcript

[A]

You're listening to TED Talks Daily where we bring you new ideas to spark your curiosity every day. I'm your host, Elise Hu. What does Parkinson's smell like? Ask nurse Joy Milne.

[B]

Les and I met when we were 16 at school and he had this wonderful male musk smell. He knew I was sensitive, so he didn't wear any perfume or deodorant. However, when he was 31, that smell began to change and it worried me. By the time he was 33, this smell was his dominant smell. But unknown to us, I had diagnosed him with a disease. My nose had diagnosed him and it took medicine 12 years later to catch up and he was diagnosed with Parkinson's disease.

[A]

Born with a hypersensitive nose, Joy began to recognize diseases through their scents. During her decades of work as a nurse, she shares the journey she's been on to make the best of her super smelling abilities and how her extraordinary nose has been translated into a non invasive test, helping researchers diagnose what was right under their noses all along. That's coming up right after a short break.

[C]

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[A]

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[B]

I'm going to start by asking you, which superpower would you like to choose? Would it be flying? Would it be strength? Would it be speed? The national papers and media have given me have said I have a superpower. However, I did not choose this superpower. I was born with a nose that can diagnose. I'm going to take you back to 1956, a long time ago. I was a six year old girl standing in front of my grandmother, grumbling, my friends, they all smell, they really smell. And in her Scottish accent, now you canna be seeing that. That's no nice. People dinna smell the way we can. My mother had the nose, I have the nose now you hate. But don't you worry, I will help you the way my mother helped me. But she raised her voice and pointed a finger. You can tell naebody they winna like it. No promise. I promised. I nodded my head, she gave me a cuddle and left the room. Many years later, I was to discover that she had just told me I had hereditary hyperosmia, a heightened sense of smell. But the words you can tell naybody split me in two. There was the nose sensing everything around me, and then there was me. But she didn't abandon me. She helped me. She was very understanding, we had great fun, we smelt everything, good and bad. It was just wonderful. But I soon, much to my amazement, when I was older, I realized my grandmother took a smell, she separated it and there was never one smell. It became volatiles. Now you can all do this. You open your petrol cap and what do you get? A rather nasty smell. But you take the nozzle, you put it in the hole, you press the lever and while the smell comes out of you, doesn't it out of you? It's gasoline. When you sit down on a Friday evening with a glass in your hand and you think, oh, I'll just have a drink. You don't just go, you have a smell. You relax. So you all know about volatiles. But the greatest example is the child with the fart. They all know what that means. However, I was to trouble my grandmother a little. I decided to do nursing and she realized what the nose would experience. I'm going to draw a picture for you. The NHS in 1968. Long Nightingale wards. 18 patients minimum, with five beds down the middle. In winter, we had no disposables, metal bed pans, metal urinals, open sputum mugs on the top of the bed, the cabinets at the side of the bed. We had to take those receptacles, take them into the sluice, sometimes divide them up and put them into vials to go off to the lab. Or we poured them down the sluice and the hot water would hit them and the nose began to realize what those volatiles were. The diseases that I was experiencing. I had acquired a medical olfactory library. I called it my nursing bag of smells. But there was somebody at that time who was very important to me, who came into my life. He was my husband, to be Les and I met when we were 16, at school. And he had this wonderful male musk smell. He really did. He didn't wear any perfume. He knew I was sensitive, so he didn't wear any perfume or deodorant. However, when he was 31, that smell began to change and it worried me. By the time he was 33, this smell was his dominant smell. But unknown to us, I had diagnosed him with a disease. My nose had diagnosed him. And it took medicine 12 years later to catch up. And he was diagnosed with Parkinson's disease. It developed quite quickly, and he retired from being a consultant. An Easter egg. When he was 50, we decided to go back to Scotland, and we were going to go to our first Parkinson's meeting. We entered the room, I spoke to the woman who had Parkinson's who was selling the raffle tickets, turned into the room, and I was hit by this overwhelming familiar smell. I lied. I made an excuse. I ran out to the toilet, and there, with my head on the wall, I asked my grandmother, what am I going to do now? I took a deep breath, went back into the room and let the nose do its work. By the time I had left that room, I could tell I could differentiate between those who had Parkinson's and those who didn't. We left, we went home and I sat him down at the dining room table and I said to him, I explained what had happened. And he looked at me and I reminded him of the smell I'd first encountered when he was about 31. And I could see his face change. He had begun to realize as a doctor. We perhaps had found a biomarker, an early diagnostic indication of Parkinson's disease. When I could not place that smell into my nursing bag, my nursing bag all of a sudden became complete. When he decided he wanted to find someone to tell. He found a Parkinson's UK lecture in Edinburgh, a stem cell lecture by Dr. Tilo Kunath. It was sad. Les was not well enough that day to come with me. And I waited for the end of the talk on stem cells and I stood up and I said, why are we not using the smell of Parkinson's to diagnose it earlier? Total silence. Tilo said, could you repeat that? So I repeated it again. He looked around the room, everybody turned around and perhaps we could talk about this later, could we? Teelo was busy and I knew Les was ill. We had a quick hello and I left. It was to take a while before things were moving, but Tilo went to a dinner and he said to this cancer researcher what had happened. And the woman said to him, go and find that woman. So I got this phone call through Parkinson's UK and we had a quick chat about it. And then Tilo introduced me to Professor Padita Barnes. She's at Manchester Biotechnology Unit, just down the road in the university. And they decided, quite rightly, they had to separate me from anyone that had Parkinson's because I could see the signs, symptoms. So they were going to. They thought about it and they thought T shirts. So there were 12 people, there were six who were controls, people without Parkinson's, six with Parkinson's. They wore T shirts for 24 hours. They weren't allowed to bathe or have any perfume on or any deodorant. They took them off after the 24 hours, bagged them and sent them back to Tilo. Tilo and I had had a discussion that the main smell was around the back of the neck and the face. So they took the T shirts, cut the back of the neck out and even to make it more awkward for me, cut them in half. So I was presented with 24 bags. The results were surprising. There were three important things I could diagnose all the people with Parkinson's disease. The smell indeed was not in the armpits, but at the mid back. I had one false positive. Oh, no, said I. That person came back six months later and said, I have Parkinson's. So I had actually pre diagnosed somebody in the proof of concept, which made a huge difference. And this launched Nose to diagnose. We have done over 2000 total participants samples. Over 200 of those were discovering what smells in Parkinson's. Over 600 of those are understanding why Parkinson's changes the sebum in the body. Over 400 developing a fast 5 minute diagnostic test and over 700 are exploratory studies. To translate the test they've designed a very simple test, non invasive swab or Q tip round the face or the back of the neck. It is then bagged but there is a simple two pieces of paper description how to do it efficiently and we want to put it in every hospital in the world and they don't need me to smell it anymore. But that doesn't stop me. I contribute to Parkinson's all over the world. I am part of the World Parkinson's Coalition. I'm also an advocate for the World Parkinson's Congress which will be in July this year in Barcelona. I am a founder member of the Unmet Needs for Women in Parkinson's which is fairly new. And also I'm on the YOPD Council. The Women's Council is run by Helen Matthews from the CURE Parkinson's Trust and they facilitate it. I also do other talks of course from my home to various people in the world. And also I am doing extra in the research field for carers. I have actually helped to produce a course for healthcare professionals as I was a carer for such a long time to make carers aware of the problems and the anxiety of being a carer. Less. Unfortunately, he died just after the first set of testing on his JF bed. He made me promise. He made me promise that I would continue this research. And I now realize I have fulfilled my promise to him. However, the nose hasn't stopped. Well, I can't stop it. I have to breathe. But Dr. Drupad, Trivedi and I were invited to Tanzania by a pupo and I'm going to introduce you to Kennedy, the great African pouch rat. The rats are trained from being very young to actually detect landmines or tb. They are binary. However they say a yes or no. They don't give any indication of the amount of infection to actually be diagnosed. We are hoping we did a very intensive research session and we gave them urine, breathomics, sebum and sputum as well. Now why were Les and I so set on doing all of this? Parkinson's is only diagnosed at 50% of the neural damage in the net and it is irreversible. What Les and I had hoped that a test would do is I asked the question, what if Les was diagnosed when he was 33? What if we had realized the changes that were happening to him? We could have helped him. Instead we didn't know what was happening to him. What if the women who have Parkinson's who are misdiagnosed for many years could be diagnosed with a simple test? What if the young onset Parkinson's disease, the yopd, they could be diagnosed earlier instead of having their shoulder or their leg operated on because of the severe pain they're suffering from. What a difference this would make. And what would my grandmother say it would be? Not don't tell anybody. Go on Lass, tell the world. Thank you.

[A]

That was Joy milne speaking at TEDx Manchester in the United Kingdom in 2023. If you're curious about Ted's curation, find out more at ted.comcurationguidelines and that's it for today. TED Talks Daily is part of the TED Audio Collective. This talk was fact checked by the TED Research team and produced and edited by our team, Martha Estefanos, Oliver Friedman, Brian Greene, Lucy Little and Tansika Songmanivong. This episode was mixed by Lucy Little. Additional support from Emma Tobner and Daniela Ballaraizo. I'm Elise Hu. I'll be back tomorrow with a fresh idea for your feed. Thanks for listening.

[D]

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[C]

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[E]

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