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What does Parkinson's smell like?
Ask Nurse Joy Milne.
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.
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.
And now, our TED Talk of the day.
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 don't smell the way we can.
My mother had the nose.
I have the nose.
Now you here.
But don't worry.
I will help you the way my mother helped me.
But She raised her voice and pointed a finger.
You can't tell nobody.
They won't 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, nabody, 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 car, 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.
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 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 anaesthetist 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 Thilo Kunas.
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?
Tilo 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 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.
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 Knows 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
They've designed a very simple test, non-invasive swab or Q-tip around 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.
Les, 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. Drupad 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.
So 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 percent 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.
That was Joy Milne speaking at TEDxManchester in the United Kingdom in 2023.
If you're curious about TED's curation, find out more at TED.com slash curation guidelines.
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 Green, Lucy Little and Tansika Sungmarnivong.
This episode was mixed by Lucy Little.
Additional support from Emma Taubner and Daniela Balarezo.
I'm Elise Hu.
I'll be back tomorrow with a fresh idea for your feed.
Thanks for listening.
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