The Woman Who Can Smell Parkinson's BBC Scotland Investigates

This is the woman who can smell Parkinson's.

That may sound impossible, but it's true.

She was telling us

that this individual had Parkinson's before he knew,

before anybody knew, so then I really started to believe her,

that she could really detect Parkinson's.

But this is also a story about one woman's promise to her dying husband.

He said to me, "You won't let this go, will you?

"You promise you will do it?"

I'm doing it.

How does Joy do this?

Could her ability really change the lives of people with Parkinson's?

BBC Scotland has been following the scientists

who will answer those questions.

I'm really excited.

I'm also incredibly humbled

because in the end these come

from patients and the story comes

from Joy who lived with Les

for a very long time

and now he isn't here any more.

It's an amazing story,

offering hope to millions of people around the globe.

It was a really strange sensation that day.

I have to take a deep breath every time I come in this room.

I could smell it all around me.

Joy Milne is remembering the moment that changed her life.

She'd taken her husband Les, who had Parkinson's disease,

to a support group meeting.

I was giving a talk about stem cells and Parkinson's disease

in our institute here

and at the end of the talk

I entertained some questions

as I would normally do and this was when I first heard Joy's voice.

I have to say it was a truly out-of-body experience.

I didn't hear a word anybody said during the meeting.

"I've got to do this, I've got to do this. No, I can't do...

"I've got to do this."

And I kept on saying to myself, "I have got to stand up and say this,"

and the next thing my knees locked and I was standing up...

..and my sentence, I said,

"Why are we not using the smell of Parkinson's to diagnose earlier?"

Total silence.

Tilo went back to his normal work on stem cells,

but he couldn't stop thinking about Joy's question

and three weeks after the meeting, he decided to track her down.

I found out her name was Joy, Joy Milne from Perth,

and I got her phone number and I phoned her and asked her,

"Why did you ask me that question?

"This is a very strange question to ask

"and we didn't get to speak about it after the lecture."

And then she went into her story that her husband Les started

having a change in odour well before he had any signs of Parkinson's.

Once Tilo had found Joy, he needed to test her to see

if her seemingly impossible claim could be true.

I consulted with a few people and there was ideas of having people

with Parkinson's walk past her, etc, and having her blindfolded,

but people with Parkinson's have a particular shuffle,

so eventually we settled on, "Let's get an article of clothing

"that people of Parkinson's and people without Parkinson's wore,"

and then we would just give Joy the articles of clothing,

so not meet the person, not be anywhere near the person,

just something that the person wore.

So Joy was given 12 T-shirts to smell -

six worn by Parkinson's patients

and six by volunteers without the disease.

We were amazed at how accurate she was.

She told us seven of these people had Parkinson's

and five of them didn't, so she was really, really accurate.

So there was one person that didn't have Parkinson's

that she said had Parkinson's, so that was her only mistake,

so we thought 11 out of 12 is quite good.

Well, tell me the numbers of how good you were at working out who had what.

11 I got right and of course there was this one in the wind...

..that, you know, we disagreed with.

That one result was a T-shirt

worn by a member of the control group, Bill.

He had not been diagnosed with Parkinson's,

but Joy was sure he had the condition.

Maybe ten weeks, three months later Bill phoned up and said,

"Well, I've got Parkinson's."

And Tilo went, "Ah! That changes everything."

She was telling us that this individual had Parkinson's

before he knew, before anybody knew,

so then I really started to believe her,

that she could really detect Parkinson's simply by odour

transferred onto a shirt that a person with Parkinson's was wearing.

A few months after Joy passed the T-shirt test,

I brought her story to the world.

I've covered hundreds of stories over the years

but this one was a bit different.

It was incredible, almost unbelievable,

and it was clear that Joy's story had a massive impact on the millions

of people living across the world with this terrible disease.

Joy knows only too well

what Parkinson's disease means for patients and their families.

Her husband Les was diagnosed with the illness in his mid-40s.

Les and Joy loved to travel.

He was a consultant anaesthetist, Joy was a nurse and lecturer.

They met in their teens and built a life together.

Even as two medical people,

we weren't prepared for what was about to happen.

Les had always been sporty, playing water polo,

swimming for Scotland and he was a keen golfer.

He had had to give up his golf, he loved his golf.

His friends still took him out in the buggy, but it wasn't the same.

Les died at the age of 65.

By the end, there was little he could do for himself.

He weeded our pathways and our garden and after he died,

it was one of my bad days, cos there was weeds everywhere.

You know, and I thought, yes, it was one of the really...

It was one of his sanity things.

I could see him go and get the bucket

and he knew he could do that.

Joy had spent over 40 years with Les and her last promise to him was that

she would investigate her special ability and how it might help others.

He said to me, "You won't let this go, will you?

"Promise you will do it?"

I'm doing it.

Tilo had proved Joy could smell Parkinson's.

The disease is the second most common neurodegenerative condition

after Alzheimer's, but there's no cure and not even a test.

Might Joy's ability help change that?

So you can imagine a small collection

of fairly inexpensive tests

and a skin swab for an odour would be very inexpensive.

That's a game-changer -

if you can give someone a very accurate prediction

if they're on the verge of Parkinson's

based on molecular signatures on their skin.

Tilo brought Perdita Barran on board.

She's an expert in chemical analysis.

She's trying to isolate the actual molecules

that form the smell Joy smelt.

Perdita's team have been collecting samples

from patients with Parkinson's

and a control group of those without.

They want to see if there are molecular signatures

that only the Parkinson's patients have.

Perdita is running the samples through a mass spectrometer -

a device that isolates and weighs individual molecules.

Most of the molecules will be the same.

Most people have a lot of the same metabolites,

based on what we've eaten or how we are that day,

but people with Parkinson's have some different molecules.

That's what Joy's smelling

and that's what we're identifying here.

So what's causing that smell?

At first, researchers focused on the underarms of the sample T-shirts,

thinking it might be sweat,

but Joy found the smell was strongest at the neck.

That suggested that the smell came from sebum,

an oily substance we secrete on our skin.

And that fits Parkinson's, where we've known for 200 years

that waxy skin was associated with the disease.

Perdita and Joy are hoping that as they learn more about the smell,

it might lead to more than just a test, it could tell us

much more about the early stages of Parkinson's itself.

Can we find out enough about the very early stages of the disease

that we could...

Then we... Drug companies could develop some medication

that would really prevent the devastating effects.

So far we can only alleviate them for some time,

but if we could prevent them, that would be wonderful.

We'll see.

Today, Joy is in Manchester to see Perdita's first set of results

and they're very encouraging.

Each of these red bars represents a molecule

only found in the Parkinson's patients.

Here we have ten features,

ten molecules that are distinctive to that population,

and so we think that those molecules may well be what Joy is smelling,

cos this type of analysis was most similar to Joy's smell.

How do you feel, looking at that?

Right, yes, it's real. This is very, very real.

-Now you knew, you felt it was real anyway...

-Oh, yes.

..but now you can see the results there.

But that's medical and scientific proof.

-Well, you are scientific proof, too, Joy.

-Yes, I know.

-It's just that we know what these molecules are...

-Yes.

-..and you just know it as a smell.

-What would Les say?

Oh, don't, don't...

-He'd really be pleased.

-The medical man.

Well, that's the last six weeks of his life, that's what he wanted.

Mm.

Joy first noticed Les's smell 30 years before he died

and ten years before he was diagnosed with Parkinson's.

It was a new smell, I didn't know what it was,

I had not met it anywhere else, so it wasn't in my memory.

I kept on thinking, "Goodness, this smell."

I kept on saying to him,

"But you're not showering, what's wrong? What are you doing?"

And he became quite upset about it.

He really did, so I just had to be quiet.

But after Les was diagnosed, he joined a Parkinson's support group

and Joy made a surprising discovery.

We sat down, we were having a cup of tea and I said to him,

"Those people smell the same as you."

And he said, "What? What are you talking about?"

I said, "The people with Parkinson's in that room smelt the same as you."

So he looked at me and he said, "We have to go back and do this again."

Being the doctor, have to have more proof!

And then I started going round thinking,

"Would you like a chocolate biscuit?"

SHE SNIFFS

Oh, Joy.

And went home, and as soon as I was in the car,

he said, "Well?" I said, "It's amazing.

"There's all different levels but the smell is there."

We wanted to know more about Joy's sense of smell so we brought her

to the world's leading perfume school just outside Paris.

She's come to be tested.

So, Joy, we will conduct with you the test

we're conducting with young students that we will hire

in the perfumery school.

OK.

So just be careful not to touch your nose, so you won't get contaminated.

Joy is given samples of chemicals at very small concentrations.

Initially, she does well...

..but what becomes clear is that as she's exposed to more and more

smells at higher concentrations, her sense of smell becomes overwhelmed.

I'm... I found that very...

Joy, a round of applause - it's difficult, it's overwhelming

and I know that you're very used to smelling

very, very mild differences

and here it we can be overwhelming

and you have to be brave to go up to the end with all those smells.

-You will recover!

-Thank you.

What the tests prove is that, unlike the other students here,

Joy's sense of smell just can't cope with strong samples.

Her nose is, if anything, too sensitive.

I think you are part of a very, very tiny percentage of the

population that is, first,

extremely sensitive at the low level of a smell.

-Yes.

-And that is doubled by another capacity that is extremely rare,

-of paying attention to it.

-Yes.

In terms of the population range, I don't know where you will stand,

but it's the first time I'm meeting someone like that. For sure.

Professor Perdita Barran, when she was looking at how I was smelling

and how the results were coming on the spectrometer,

she just said to me,

"You're somewhere between a human and a dog."

OK. That means exactly that, yeah.

Joy's time at Givaudan has confirmed she's special,

and that her special sense of smell is a key part of what makes Joy Joy.

My experience of life is that I smell everything

as I go through anywhere. All day.

I just smell things.

And sometimes I waken up in the morning

and I haven't opened my eyes and I smell.

And that's what I do,

because I want to see how...

..how things are around me.

Entering Joy's world is entering a world dominated by smell.

Her ability could revolutionise how we see Parkinson's,

but every day,

she faces the possibility of an almost impossible dilemma.

You've established that, yes, I can walk in a room of Parkinson's people

and I can smell it,

both in Perth, Glasgow, in Edinburgh.

Can you smell it other places, though?

Yes, I have.

Ethically, I cannot tell somebody,

because,

um...

The test isn't there yet.

We're going to be there soon,

but it isn't there yet.

-Can you give me an example, then?

-There has been...queries

as I've walked past people,

especially one in Tesco's.

But he was a complete stranger.

I've been lucky that I haven't come in contact too often.

There was a woman who was saying she had problems,

she'd been to the doctor for this and that, and I'm thinking...

SHE SNIFFS

..and I got nearer this person and nearer this person,

and I knew she had Parkinson's.

You knew she had Parkinson's.

Yes.

From what she was saying to her friends about what was

happening to her, and I got close enough.

But, ethically, you think you can't do anything?

Well, we had the discussion,

if...

you were her GP and this woman turned up and said,

"The woman who can smell Parkinson's tells me

"I have Parkinson's,"

it's not going to bode well for them,

and it wasn't going to bode well for us

and the research either.

I know. It's terribly difficult.

I live with it, but it's terribly difficult.

That fact that Joy can't warn people makes it even more important to her

that her ability leads to a reliable test,

a test that could diagnose Parkinson's early.

In an unassuming industrial park outside Cambridge,

Joy and Perdita are hoping they're about to take another

step closer to achieving that.

Joy is smelling samples from Perdita's study.

They're taken from real patients.

At the same time, a mass spectrometer is analysing exactly the same sample.

So, the purpose of this experiment is to see whether Joy can

distinguish the Parkinson's smells from the samples that we've

taken from patients as they're separated,

and if she smells it and presses a button

to say she's smelt it,

the mass spectrometer weighs it at the same time

and we'll then know right away what that molecule is.

Joy and the mass spectrometer pick out five key molecules

associated with Parkinson's.

They're getting ever closer to understanding exactly what Joy

is smelling.

Yes, that was really exciting.

It was right there in the middle, right there in the middle.

So I had five smells there.

I had two bottom, the base ones, and then I got three.

And then, of course, that bit, I kind of...

Oh, that's it.

That was...

God, you're a wonder, Joy.

Best we've done. It really is.

And the background was less, or you screened out...?

I've got the background under control now.

Here we are, from you in the Parkinson's centre that you went to,

to here, it's amazing, isn't it?

I mean, that time when you smelt Les on other people,

and now we're here. It's sort of amazing.

It is very humbling, as a mere measurement scientist,

to help to find some signature molecules

to diagnose Parkinson's.

It wouldn't have happened without Joy, you know?

That's the most important thing.

It wouldn't have happened without her,

and so for all the serendipity it was Joy and Les

who were absolutely convinced that what she could smell

would be something that could be used in a clinical context,

and so now we're beginning to do that.

It's been worthwhile, then?

It's been worthwhile, yeah. Yeah.

Joy has met many remarkable people as she investigates her ability.

One is Susana Camara Leret.

She's an artist who's interested in smell,

and she's convinced Joy's ability is about more than just

a remarkable nose.

What's very unique about Joy is that she was a nurse

and she was exposed to many smells that are, you know,

linked to different illnesses and different changes in the body

and because of that, she has a different relationship to

these kind of odours that might play a very important role

in understanding how smell could be used as a biomarker,

for example, to detect different diseases,

or to understand the way that the body changes through them.

When Susana approached Joy,

she offered to work on building Les's smell up from scratch.

Today, they're sampling some of the powerful musky elements of the odour.

They agreed to share what they've got so far

with my delicate nose.

So, this is based on some of the compounds that we smelled

that Joy identified as the muskiness that she could smell,

but also the fattiness.

There's this kind of oily smell,

probably because of the sebum.

I feel like a whisky-taster here.

-A kind of layer of fat.

-Mm-hm.

-Sort of.

-Can you get the musk?

Yeah, kind of underlying that.

Mm-hm.

It needs to be stronger.

Which one has the sweaty-feet mix in it?

This one.

-Gosh.

-Try this one.

That's the best I've smelt it.

Smell them together.

SHE CLEARS HER THROAT

I don't think I could smell that again.

Oh, yes. The base of that's good.

Back in Perth, Joy is meeting up with two old friends.

I think that one's super.

Isn't she brilliant?

Rena and Betty have been an important support for Joy

as she's campaigned on Parkinson's.

Rena's husband Ivan had the disease,

as did Betty's John.

These three women saw changes in their husbands

well before they were diagnosed,

not just smell but embarrassing things like constipation

and impotence and, most difficult of all,

gentle men suddenly troubled by depression and aggression.

Although it only happened twice with us that Les lifted his hand to me,

I do know that it was totally out of character.

-Indeed. Mm-hm.

-Totally out of character.

-All of that is a long time before diagnosis.

-Yes.

I had that type of incident also, where he didn't actually hit me.

I didn't get hit.

I was very bruised in my arm,

etc, and he had no idea.

I mean, he was so apologetic afterwards, etc,

and he really was...

I mean, he was devastated that he'd got into a state.

-I don't think they're aware.

-He did not know...

They don't realise it's happening, do they,

probably until the last minute.

Not everyone who has Parkinson's will see behaviour changes

like John, Ivan and Les.

And Les, in particular, also suffered from dementia,

but what these women want is an open discussion

of everything that can happen,

to make sure families get support and the disease is spotted early.

The kind of person he was,

I know that he would have felt very embarrassed about it all,

but at the same time, if he thought, by disclosure,

one was going to be able to influence people

who are having early signs,

which are being ignored - or they are ignoring,

-as our husbands did...

-That's true.

They ignored the early signs,

I think if he thought it could do some good,

-he would say, "Right, go for it."

-Yes.

Les's last six weeks,

he started writing.

He did it because he wanted medicine to know

what had happened to him, and he knew they didn't.

The repercussions of your standing up and saying,

"I can smell Parkinson's," have not been in this country alone.

-No.

-It's worldwide.

-It is worldwide. Yes.

-People have joined us and said...

-So we should be very privileged!

To stand up and say it, I was frightened that day.

-Even as a nurse, and with Les backing me...

-Yes.

..we knew it was the right thing to do.

-But you did it, and look where we are now.

-Where we are now.

I think Joy really did kick-start an avenue of research

that was, essentially, non-existent at the time.

I'm really excited.

I'm also incredibly humbled because, in the end,

the story comes from Joy, who lived with Les for a very long time

and now he isn't here any more.

I think we're still at the beginning of it,

but, I don't know, it's been an exciting journey,

and I really look forward to see where it's going to lead

to in the future.

Having lived with Les,

we were together 35 years of Parkinson's,

we were married for 42 years when he died,

so I don't want other families to have the same experience.

I want relief for them.

I want to see a better understanding within medicine,

a better education for the general public,

and the hope that, with early diagnosis,

there is going to be treatment.