The nurse who can smell Parkinson’s | Joy Milne (Senses Miniseries #4)

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1:47My favorite flavor, blueberry almond, has perfectly crispy clusters, delicious almonds, and bursts of whole blueberries. It's an easy fit for a daily routine, whether that's for breakfast or a snack. In a world of overwhelm, it's a straightforward, delicious choice. Try new Kashi Gut Health Granola. This is TED Health, a podcast from TED, and I'm Dr. Shoshana Ungerleiter. I'm a board-certified practicing internal medicine physician, and I'm your host for today's show. This episode is part of our series on the five senses. Today, smell and how to make sense of what our noses are telling us. Most of medicine is built around what the average person can detect.

2:31The normal hearing range, the typical visual field, the small threshold most people fall above or below. But there are outliers across the senses. Some people are extraordinarily good at recognizing faces. Some women may have a fourth type of color-sensing cone, allowing them to distinguish shades that look identical to most of us. These abilities sit at the far edges of a spectrum. Opposite conditions like face blindness or loss of smell. And when it comes to smell, the heightened sensitivity is called hyperosmia. Hyperosmia is a relatively rare condition where someone can detect odors at concentrations far below what most of us can perceive.

3:13It's often described as a heightened sense of smell. Sometimes it's inherited. Sometimes it appears alongside migraine, pregnancy, or other medical conditions. And sometimes what feels like extreme sensitivity is not better smell detection at all, but a stronger emotional or physical reaction to odors. And that distinction is important because a true sensory outlier is not just someone who says, I have a good nose. It's someone whose ability holds up under controlled testing. And when that happens, it raises an interesting question. What can the edges teach us about the middle? Most clinical tools are designed to identify loss.

3:54We test whether someone can still smell, hear, see, or recognize within an expected range. We're much less practiced at measuring enhancement. In fact, some people perform so far beyond standard testing that researchers have to invent new ways to study them. That's what happened to Joy Milne. Joy was born with hereditary hyperosmia. Over time, she developed what she calls a medical olfactory library, a memory bank of smells associated with illness. Years before her husband was diagnosed with Parkinson's disease, she noticed that his scent had changed. Medicine didn't yet have a test for what she was detecting.

4:36So scientists built one. Her story is about more than an unusual nose. It's about what happens when a human sense notices biology before our instruments do. It's also a reminder that outliers are not noise at the edge of the data. Sometimes they're the reason we learn to look, or maybe sniff again.

5:00Joy Milne: And now, Joy Milne. 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 cannae be saying that. That's no nice. People donae smell the way we can.

6:13Joy Milne: My mother had the nose. I have the nose. Now you hear. But donae worry. I will help you the way my mother helped me.

6:31Joy Milne: But she raised her voice and pointed her finger. You can tell nobody. They winnie like it. You 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, nebody, 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.

7:57Joy Milne: 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 wow, 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.

8:49Joy Milne: 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 bedpans, 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 realise what those volatiles were, the diseases that I was experiencing.

10:01Joy Milne: I had acquired a medical olfactory library. I called it my nursing bag of smells.

10:16Joy Milne: 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.

11:23Joy Milne: It developed quite quickly. and he retired from being a consultant anesthetist 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.

12:32Joy Milne: 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 encounter 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. Thilo Kunas.

13:36Joy Milne: 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.

14:03Tilo said, could you repeat that?

14:06Joy Milne: So I repeated it again. He looked around the room, everybody turned around, and perhaps we could talk about this later, could we? Tilo was busy, and I knew Les was ill. We had a quick hello, and I left.

14:26Joy Milne: 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 Petita Barn. She is 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, you know, T-shirts.

15:20Joy Milne: 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.

16:13Joy Milne: 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 2 ,000 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 five-minute diagnostic test, and over 700 are exploratory studies to translate the test.

17:25They've designed a very simple test, non-invasive, swab or Q-tip around the face or the back of the neck.

17:36Joy Milne: 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.

18:34Joy Milne: 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.

19:11Joy Milne: Less unfortunately, he died just after the first set of testing. On his deathbed, 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. Drupal Trivedi and I were invited to Tanzania by a popo. 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.

20:22Joy Milne: So we're hoping we did a very intensive research session and we gave them urine, brithomics, 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.

20:59Joy Milne: 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.

21:57Joy Milne: And what would my grandmother say? it would be not don't tell anybody. Go on, lass. Tell the world. Thank you.

22:13That was Joy Milne at TEDxManchester in 2023. If you liked this episode, check out previous week's episodes on Sight, Touch, and Taste. Next week, we're wrapping up this series on the senses with hearing. Kind of perfect for a podcast, right? I hope you'll join us. Ted Health is a podcast from Ted, and I'd love to hear your thoughts about this episode. Send me a message on Instagram at ShoshanaMD. This episode was produced by me, Shoshana Ungerleiter, and Jess Shane. Edited by Alejandra Salazar and fact-checked by Vanessa Garcia-Woodworth. Special thanks to Maria Lages, Farrah Degrange, Daniela Balarezo, Constanza Gallardo, Tansika Sangmarniwang, and Roxanne Heilash.

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