0:00:03 > 0:00:06This is the woman who can smell Parkinson's.
0:00:07 > 0:00:11That may sound impossible, but it's true.
0:00:11 > 0:00:13She was telling us
0:00:13 > 0:00:16that this individual had Parkinson's before he knew,
0:00:16 > 0:00:20before anybody knew, so then I really started to believe her,
0:00:20 > 0:00:23that she could really detect Parkinson's.
0:00:23 > 0:00:28But this is also a story about one woman's promise to her dying husband.
0:00:28 > 0:00:31He said to me, "You won't let this go, will you?
0:00:31 > 0:00:33"You promise you will do it?"
0:00:37 > 0:00:39I'm doing it.
0:00:39 > 0:00:42How does Joy do this?
0:00:42 > 0:00:46Could her ability really change the lives of people with Parkinson's?
0:00:46 > 0:00:50BBC Scotland has been following the scientists
0:00:50 > 0:00:53who will answer those questions.
0:00:54 > 0:00:55I'm really excited.
0:00:55 > 0:00:58I'm also incredibly humbled
0:00:58 > 0:01:00because in the end these come
0:01:00 > 0:01:03from patients and the story comes
0:01:03 > 0:01:05from Joy who lived with Les
0:01:05 > 0:01:06for a very long time
0:01:06 > 0:01:08and now he isn't here any more.
0:01:11 > 0:01:13It's an amazing story,
0:01:13 > 0:01:17offering hope to millions of people around the globe.
0:01:28 > 0:01:31It was a really strange sensation that day.
0:01:35 > 0:01:38I have to take a deep breath every time I come in this room.
0:01:40 > 0:01:42I could smell it all around me.
0:01:44 > 0:01:48Joy Milne is remembering the moment that changed her life.
0:01:48 > 0:01:53She'd taken her husband Les, who had Parkinson's disease,
0:01:53 > 0:01:56to a support group meeting.
0:01:56 > 0:02:00I was giving a talk about stem cells and Parkinson's disease
0:02:00 > 0:02:03in our institute here
0:02:03 > 0:02:04and at the end of the talk
0:02:04 > 0:02:06I entertained some questions
0:02:06 > 0:02:11as I would normally do and this was when I first heard Joy's voice.
0:02:11 > 0:02:15I have to say it was a truly out-of-body experience.
0:02:15 > 0:02:19I didn't hear a word anybody said during the meeting.
0:02:19 > 0:02:22"I've got to do this, I've got to do this. No, I can't do...
0:02:22 > 0:02:24"I've got to do this."
0:02:24 > 0:02:28And I kept on saying to myself, "I have got to stand up and say this,"
0:02:28 > 0:02:31and the next thing my knees locked and I was standing up...
0:02:32 > 0:02:34..and my sentence, I said,
0:02:34 > 0:02:38"Why are we not using the smell of Parkinson's to diagnose earlier?"
0:02:42 > 0:02:43Total silence.
0:02:48 > 0:02:52Tilo went back to his normal work on stem cells,
0:02:52 > 0:02:57but he couldn't stop thinking about Joy's question
0:02:57 > 0:03:01and three weeks after the meeting, he decided to track her down.
0:03:01 > 0:03:04I found out her name was Joy, Joy Milne from Perth,
0:03:04 > 0:03:11and I got her phone number and I phoned her and asked her,
0:03:11 > 0:03:12"Why did you ask me that question?
0:03:12 > 0:03:14"This is a very strange question to ask
0:03:14 > 0:03:18"and we didn't get to speak about it after the lecture."
0:03:18 > 0:03:23And then she went into her story that her husband Les started
0:03:23 > 0:03:29having a change in odour well before he had any signs of Parkinson's.
0:03:29 > 0:03:33Once Tilo had found Joy, he needed to test her to see
0:03:33 > 0:03:37if her seemingly impossible claim could be true.
0:03:37 > 0:03:42I consulted with a few people and there was ideas of having people
0:03:42 > 0:03:46with Parkinson's walk past her, etc, and having her blindfolded,
0:03:46 > 0:03:49but people with Parkinson's have a particular shuffle,
0:03:49 > 0:03:55so eventually we settled on, "Let's get an article of clothing
0:03:55 > 0:03:59"that people of Parkinson's and people without Parkinson's wore,"
0:03:59 > 0:04:03and then we would just give Joy the articles of clothing,
0:04:03 > 0:04:06so not meet the person, not be anywhere near the person,
0:04:06 > 0:04:08just something that the person wore.
0:04:08 > 0:04:11So Joy was given 12 T-shirts to smell -
0:04:11 > 0:04:14six worn by Parkinson's patients
0:04:14 > 0:04:17and six by volunteers without the disease.
0:04:17 > 0:04:20We were amazed at how accurate she was.
0:04:20 > 0:04:23She told us seven of these people had Parkinson's
0:04:23 > 0:04:27and five of them didn't, so she was really, really accurate.
0:04:27 > 0:04:30So there was one person that didn't have Parkinson's
0:04:30 > 0:04:32that she said had Parkinson's, so that was her only mistake,
0:04:32 > 0:04:36so we thought 11 out of 12 is quite good.
0:04:36 > 0:04:40Well, tell me the numbers of how good you were at working out who had what.
0:04:40 > 0:04:4411 I got right and of course there was this one in the wind...
0:04:46 > 0:04:49..that, you know, we disagreed with.
0:04:51 > 0:04:53That one result was a T-shirt
0:04:53 > 0:04:56worn by a member of the control group, Bill.
0:04:56 > 0:05:00He had not been diagnosed with Parkinson's,
0:05:00 > 0:05:02but Joy was sure he had the condition.
0:05:03 > 0:05:07Maybe ten weeks, three months later Bill phoned up and said,
0:05:07 > 0:05:09"Well, I've got Parkinson's."
0:05:09 > 0:05:14And Tilo went, "Ah! That changes everything."
0:05:14 > 0:05:18She was telling us that this individual had Parkinson's
0:05:18 > 0:05:20before he knew, before anybody knew,
0:05:20 > 0:05:22so then I really started to believe her,
0:05:22 > 0:05:26that she could really detect Parkinson's simply by odour
0:05:26 > 0:05:29transferred onto a shirt that a person with Parkinson's was wearing.
0:05:35 > 0:05:38A few months after Joy passed the T-shirt test,
0:05:38 > 0:05:42I brought her story to the world.
0:05:42 > 0:05:45I've covered hundreds of stories over the years
0:05:45 > 0:05:48but this one was a bit different.
0:05:48 > 0:05:51It was incredible, almost unbelievable,
0:05:51 > 0:05:57and it was clear that Joy's story had a massive impact on the millions
0:05:57 > 0:06:01of people living across the world with this terrible disease.
0:06:09 > 0:06:11Joy knows only too well
0:06:11 > 0:06:15what Parkinson's disease means for patients and their families.
0:06:15 > 0:06:20Her husband Les was diagnosed with the illness in his mid-40s.
0:06:20 > 0:06:23Les and Joy loved to travel.
0:06:23 > 0:06:28He was a consultant anaesthetist, Joy was a nurse and lecturer.
0:06:28 > 0:06:32They met in their teens and built a life together.
0:06:32 > 0:06:34Even as two medical people,
0:06:34 > 0:06:38we weren't prepared for what was about to happen.
0:06:38 > 0:06:42Les had always been sporty, playing water polo,
0:06:42 > 0:06:46swimming for Scotland and he was a keen golfer.
0:06:46 > 0:06:50He had had to give up his golf, he loved his golf.
0:06:50 > 0:06:55His friends still took him out in the buggy, but it wasn't the same.
0:06:57 > 0:07:00Les died at the age of 65.
0:07:00 > 0:07:04By the end, there was little he could do for himself.
0:07:04 > 0:07:11He weeded our pathways and our garden and after he died,
0:07:11 > 0:07:15it was one of my bad days, cos there was weeds everywhere.
0:07:17 > 0:07:23You know, and I thought, yes, it was one of the really...
0:07:24 > 0:07:27It was one of his sanity things.
0:07:27 > 0:07:30I could see him go and get the bucket
0:07:30 > 0:07:32and he knew he could do that.
0:07:35 > 0:07:41Joy had spent over 40 years with Les and her last promise to him was that
0:07:41 > 0:07:46she would investigate her special ability and how it might help others.
0:07:46 > 0:07:50He said to me, "You won't let this go, will you?
0:07:50 > 0:07:51"Promise you will do it?"
0:07:56 > 0:07:57I'm doing it.
0:08:06 > 0:08:09Tilo had proved Joy could smell Parkinson's.
0:08:09 > 0:08:14The disease is the second most common neurodegenerative condition
0:08:14 > 0:08:18after Alzheimer's, but there's no cure and not even a test.
0:08:18 > 0:08:21Might Joy's ability help change that?
0:08:22 > 0:08:25So you can imagine a small collection
0:08:25 > 0:08:27of fairly inexpensive tests
0:08:27 > 0:08:31and a skin swab for an odour would be very inexpensive.
0:08:31 > 0:08:32That's a game-changer -
0:08:32 > 0:08:35if you can give someone a very accurate prediction
0:08:35 > 0:08:36if they're on the verge of Parkinson's
0:08:36 > 0:08:41based on molecular signatures on their skin.
0:08:47 > 0:08:50Tilo brought Perdita Barran on board.
0:08:50 > 0:08:53She's an expert in chemical analysis.
0:08:54 > 0:08:57She's trying to isolate the actual molecules
0:08:57 > 0:08:59that form the smell Joy smelt.
0:09:01 > 0:09:03Perdita's team have been collecting samples
0:09:03 > 0:09:05from patients with Parkinson's
0:09:05 > 0:09:08and a control group of those without.
0:09:10 > 0:09:13They want to see if there are molecular signatures
0:09:13 > 0:09:16that only the Parkinson's patients have.
0:09:16 > 0:09:20Perdita is running the samples through a mass spectrometer -
0:09:20 > 0:09:23a device that isolates and weighs individual molecules.
0:09:23 > 0:09:26Most of the molecules will be the same.
0:09:26 > 0:09:28Most people have a lot of the same metabolites,
0:09:28 > 0:09:31based on what we've eaten or how we are that day,
0:09:31 > 0:09:34but people with Parkinson's have some different molecules.
0:09:34 > 0:09:35That's what Joy's smelling
0:09:35 > 0:09:37and that's what we're identifying here.
0:09:37 > 0:09:41So what's causing that smell?
0:09:41 > 0:09:46At first, researchers focused on the underarms of the sample T-shirts,
0:09:46 > 0:09:48thinking it might be sweat,
0:09:48 > 0:09:52but Joy found the smell was strongest at the neck.
0:09:52 > 0:09:55That suggested that the smell came from sebum,
0:09:55 > 0:09:58an oily substance we secrete on our skin.
0:09:58 > 0:10:03And that fits Parkinson's, where we've known for 200 years
0:10:03 > 0:10:07that waxy skin was associated with the disease.
0:10:10 > 0:10:15Perdita and Joy are hoping that as they learn more about the smell,
0:10:15 > 0:10:19it might lead to more than just a test, it could tell us
0:10:19 > 0:10:24much more about the early stages of Parkinson's itself.
0:10:24 > 0:10:28Can we find out enough about the very early stages of the disease
0:10:28 > 0:10:29that we could...
0:10:29 > 0:10:33Then we... Drug companies could develop some medication
0:10:33 > 0:10:38that would really prevent the devastating effects.
0:10:38 > 0:10:40So far we can only alleviate them for some time,
0:10:40 > 0:10:43but if we could prevent them, that would be wonderful.
0:10:43 > 0:10:44We'll see.
0:10:45 > 0:10:51Today, Joy is in Manchester to see Perdita's first set of results
0:10:51 > 0:10:53and they're very encouraging.
0:10:53 > 0:10:57Each of these red bars represents a molecule
0:10:57 > 0:10:59only found in the Parkinson's patients.
0:10:59 > 0:11:02Here we have ten features,
0:11:02 > 0:11:06ten molecules that are distinctive to that population,
0:11:06 > 0:11:12and so we think that those molecules may well be what Joy is smelling,
0:11:12 > 0:11:15cos this type of analysis was most similar to Joy's smell.
0:11:15 > 0:11:17How do you feel, looking at that?
0:11:19 > 0:11:23Right, yes, it's real. This is very, very real.
0:11:23 > 0:11:29- Now you knew, you felt it was real anyway...- Oh, yes.
0:11:29 > 0:11:31..but now you can see the results there.
0:11:31 > 0:11:34But that's medical and scientific proof.
0:11:36 > 0:11:40- Well, you are scientific proof, too, Joy.- Yes, I know.
0:11:40 > 0:11:42- It's just that we know what these molecules are...- Yes.
0:11:42 > 0:11:45- ..and you just know it as a smell.- What would Les say?
0:11:45 > 0:11:48Oh, don't, don't...
0:11:49 > 0:11:52- He'd really be pleased. - The medical man.
0:11:52 > 0:11:57Well, that's the last six weeks of his life, that's what he wanted.
0:11:58 > 0:11:59Mm.
0:12:06 > 0:12:11Joy first noticed Les's smell 30 years before he died
0:12:11 > 0:12:15and ten years before he was diagnosed with Parkinson's.
0:12:15 > 0:12:18It was a new smell, I didn't know what it was,
0:12:18 > 0:12:22I had not met it anywhere else, so it wasn't in my memory.
0:12:22 > 0:12:27I kept on thinking, "Goodness, this smell."
0:12:27 > 0:12:28I kept on saying to him,
0:12:28 > 0:12:32"But you're not showering, what's wrong? What are you doing?"
0:12:32 > 0:12:36And he became quite upset about it.
0:12:36 > 0:12:40He really did, so I just had to be quiet.
0:12:40 > 0:12:46But after Les was diagnosed, he joined a Parkinson's support group
0:12:46 > 0:12:49and Joy made a surprising discovery.
0:12:50 > 0:12:53We sat down, we were having a cup of tea and I said to him,
0:12:53 > 0:12:56"Those people smell the same as you."
0:12:56 > 0:12:58And he said, "What? What are you talking about?"
0:12:58 > 0:13:04I said, "The people with Parkinson's in that room smelt the same as you."
0:13:06 > 0:13:11So he looked at me and he said, "We have to go back and do this again."
0:13:11 > 0:13:16Being the doctor, have to have more proof!
0:13:16 > 0:13:18And then I started going round thinking,
0:13:18 > 0:13:20"Would you like a chocolate biscuit?"
0:13:20 > 0:13:22SHE SNIFFS
0:13:22 > 0:13:24Oh, Joy.
0:13:26 > 0:13:30And went home, and as soon as I was in the car,
0:13:30 > 0:13:34he said, "Well?" I said, "It's amazing.
0:13:35 > 0:13:41"There's all different levels but the smell is there."
0:13:49 > 0:13:53We wanted to know more about Joy's sense of smell so we brought her
0:13:53 > 0:13:57to the world's leading perfume school just outside Paris.
0:13:57 > 0:13:59She's come to be tested.
0:13:59 > 0:14:03So, Joy, we will conduct with you the test
0:14:03 > 0:14:07we're conducting with young students that we will hire
0:14:07 > 0:14:08in the perfumery school.
0:14:11 > 0:14:13OK.
0:14:13 > 0:14:17So just be careful not to touch your nose, so you won't get contaminated.
0:14:18 > 0:14:23Joy is given samples of chemicals at very small concentrations.
0:14:23 > 0:14:25Initially, she does well...
0:14:28 > 0:14:32..but what becomes clear is that as she's exposed to more and more
0:14:32 > 0:14:37smells at higher concentrations, her sense of smell becomes overwhelmed.
0:14:41 > 0:14:44I'm... I found that very...
0:14:44 > 0:14:49Joy, a round of applause - it's difficult, it's overwhelming
0:14:49 > 0:14:52and I know that you're very used to smelling
0:14:52 > 0:14:53very, very mild differences
0:14:53 > 0:14:56and here it we can be overwhelming
0:14:56 > 0:15:01and you have to be brave to go up to the end with all those smells.
0:15:01 > 0:15:04- You will recover!- Thank you.
0:15:07 > 0:15:11What the tests prove is that, unlike the other students here,
0:15:11 > 0:15:15Joy's sense of smell just can't cope with strong samples.
0:15:15 > 0:15:19Her nose is, if anything, too sensitive.
0:15:19 > 0:15:23I think you are part of a very, very tiny percentage of the
0:15:23 > 0:15:26population that is, first,
0:15:26 > 0:15:29extremely sensitive at the low level of a smell.
0:15:29 > 0:15:34- Yes.- And that is doubled by another capacity that is extremely rare,
0:15:34 > 0:15:36- of paying attention to it.- Yes.
0:15:36 > 0:15:40In terms of the population range, I don't know where you will stand,
0:15:40 > 0:15:44but it's the first time I'm meeting someone like that. For sure.
0:15:44 > 0:15:49Professor Perdita Barran, when she was looking at how I was smelling
0:15:49 > 0:15:52and how the results were coming on the spectrometer,
0:15:52 > 0:15:53she just said to me,
0:15:53 > 0:15:55"You're somewhere between a human and a dog."
0:15:55 > 0:15:58OK. That means exactly that, yeah.
0:16:01 > 0:16:05Joy's time at Givaudan has confirmed she's special,
0:16:05 > 0:16:11and that her special sense of smell is a key part of what makes Joy Joy.
0:16:11 > 0:16:16My experience of life is that I smell everything
0:16:16 > 0:16:19as I go through anywhere. All day.
0:16:19 > 0:16:21I just smell things.
0:16:21 > 0:16:23And sometimes I waken up in the morning
0:16:23 > 0:16:26and I haven't opened my eyes and I smell.
0:16:26 > 0:16:28And that's what I do,
0:16:28 > 0:16:31because I want to see how...
0:16:31 > 0:16:34..how things are around me.
0:16:43 > 0:16:47Entering Joy's world is entering a world dominated by smell.
0:16:47 > 0:16:51Her ability could revolutionise how we see Parkinson's,
0:16:51 > 0:16:53but every day,
0:16:53 > 0:16:58she faces the possibility of an almost impossible dilemma.
0:16:58 > 0:17:05You've established that, yes, I can walk in a room of Parkinson's people
0:17:05 > 0:17:07and I can smell it,
0:17:07 > 0:17:11both in Perth, Glasgow, in Edinburgh.
0:17:13 > 0:17:16Can you smell it other places, though?
0:17:16 > 0:17:18Yes, I have.
0:17:18 > 0:17:20Ethically, I cannot tell somebody,
0:17:20 > 0:17:23because,
0:17:23 > 0:17:24um...
0:17:24 > 0:17:26The test isn't there yet.
0:17:26 > 0:17:28We're going to be there soon,
0:17:28 > 0:17:30but it isn't there yet.
0:17:30 > 0:17:36- Can you give me an example, then? - There has been...queries
0:17:36 > 0:17:39as I've walked past people,
0:17:39 > 0:17:41especially one in Tesco's.
0:17:41 > 0:17:44But he was a complete stranger.
0:17:44 > 0:17:47I've been lucky that I haven't come in contact too often.
0:17:47 > 0:17:50There was a woman who was saying she had problems,
0:17:50 > 0:17:53she'd been to the doctor for this and that, and I'm thinking...
0:17:53 > 0:17:55SHE SNIFFS
0:17:55 > 0:17:58..and I got nearer this person and nearer this person,
0:17:58 > 0:18:00and I knew she had Parkinson's.
0:18:00 > 0:18:02You knew she had Parkinson's.
0:18:02 > 0:18:03Yes.
0:18:03 > 0:18:06From what she was saying to her friends about what was
0:18:06 > 0:18:11happening to her, and I got close enough.
0:18:15 > 0:18:18But, ethically, you think you can't do anything?
0:18:18 > 0:18:20Well, we had the discussion,
0:18:20 > 0:18:22if...
0:18:22 > 0:18:25you were her GP and this woman turned up and said,
0:18:25 > 0:18:28"The woman who can smell Parkinson's tells me
0:18:28 > 0:18:30"I have Parkinson's,"
0:18:30 > 0:18:33it's not going to bode well for them,
0:18:33 > 0:18:36and it wasn't going to bode well for us
0:18:36 > 0:18:37and the research either.
0:18:39 > 0:18:41I know. It's terribly difficult.
0:18:41 > 0:18:44I live with it, but it's terribly difficult.
0:18:46 > 0:18:51That fact that Joy can't warn people makes it even more important to her
0:18:51 > 0:18:55that her ability leads to a reliable test,
0:18:55 > 0:18:59a test that could diagnose Parkinson's early.
0:19:05 > 0:19:09In an unassuming industrial park outside Cambridge,
0:19:09 > 0:19:12Joy and Perdita are hoping they're about to take another
0:19:12 > 0:19:15step closer to achieving that.
0:19:17 > 0:19:21Joy is smelling samples from Perdita's study.
0:19:21 > 0:19:23They're taken from real patients.
0:19:25 > 0:19:31At the same time, a mass spectrometer is analysing exactly the same sample.
0:19:31 > 0:19:35So, the purpose of this experiment is to see whether Joy can
0:19:35 > 0:19:39distinguish the Parkinson's smells from the samples that we've
0:19:39 > 0:19:41taken from patients as they're separated,
0:19:41 > 0:19:44and if she smells it and presses a button
0:19:44 > 0:19:46to say she's smelt it,
0:19:46 > 0:19:48the mass spectrometer weighs it at the same time
0:19:48 > 0:19:50and we'll then know right away what that molecule is.
0:19:55 > 0:19:59Joy and the mass spectrometer pick out five key molecules
0:19:59 > 0:20:01associated with Parkinson's.
0:20:03 > 0:20:07They're getting ever closer to understanding exactly what Joy
0:20:07 > 0:20:09is smelling.
0:20:12 > 0:20:14Yes, that was really exciting.
0:20:14 > 0:20:17It was right there in the middle, right there in the middle.
0:20:17 > 0:20:19So I had five smells there.
0:20:19 > 0:20:23I had two bottom, the base ones, and then I got three.
0:20:23 > 0:20:26And then, of course, that bit, I kind of...
0:20:26 > 0:20:28Oh, that's it.
0:20:28 > 0:20:30That was...
0:20:30 > 0:20:32God, you're a wonder, Joy.
0:20:32 > 0:20:34Best we've done. It really is.
0:20:34 > 0:20:36And the background was less, or you screened out...?
0:20:36 > 0:20:39I've got the background under control now.
0:20:39 > 0:20:43Here we are, from you in the Parkinson's centre that you went to,
0:20:43 > 0:20:45to here, it's amazing, isn't it?
0:20:45 > 0:20:48I mean, that time when you smelt Les on other people,
0:20:48 > 0:20:51and now we're here. It's sort of amazing.
0:20:51 > 0:20:56It is very humbling, as a mere measurement scientist,
0:20:56 > 0:21:00to help to find some signature molecules
0:21:00 > 0:21:02to diagnose Parkinson's.
0:21:02 > 0:21:05It wouldn't have happened without Joy, you know?
0:21:05 > 0:21:07That's the most important thing.
0:21:07 > 0:21:08It wouldn't have happened without her,
0:21:08 > 0:21:12and so for all the serendipity it was Joy and Les
0:21:12 > 0:21:15who were absolutely convinced that what she could smell
0:21:15 > 0:21:19would be something that could be used in a clinical context,
0:21:19 > 0:21:21and so now we're beginning to do that.
0:21:21 > 0:21:23It's been worthwhile, then?
0:21:23 > 0:21:26It's been worthwhile, yeah. Yeah.
0:21:35 > 0:21:40Joy has met many remarkable people as she investigates her ability.
0:21:40 > 0:21:43One is Susana Camara Leret.
0:21:43 > 0:21:46She's an artist who's interested in smell,
0:21:46 > 0:21:50and she's convinced Joy's ability is about more than just
0:21:50 > 0:21:52a remarkable nose.
0:21:53 > 0:21:56What's very unique about Joy is that she was a nurse
0:21:56 > 0:22:02and she was exposed to many smells that are, you know,
0:22:02 > 0:22:05linked to different illnesses and different changes in the body
0:22:05 > 0:22:09and because of that, she has a different relationship to
0:22:09 > 0:22:11these kind of odours that might play a very important role
0:22:11 > 0:22:14in understanding how smell could be used as a biomarker,
0:22:14 > 0:22:17for example, to detect different diseases,
0:22:17 > 0:22:22or to understand the way that the body changes through them.
0:22:23 > 0:22:26When Susana approached Joy,
0:22:26 > 0:22:30she offered to work on building Les's smell up from scratch.
0:22:30 > 0:22:35Today, they're sampling some of the powerful musky elements of the odour.
0:22:35 > 0:22:38They agreed to share what they've got so far
0:22:38 > 0:22:40with my delicate nose.
0:22:40 > 0:22:45So, this is based on some of the compounds that we smelled
0:22:45 > 0:22:49that Joy identified as the muskiness that she could smell,
0:22:49 > 0:22:51but also the fattiness.
0:22:51 > 0:22:53There's this kind of oily smell,
0:22:53 > 0:22:55probably because of the sebum.
0:22:55 > 0:22:58I feel like a whisky-taster here.
0:23:00 > 0:23:02- A kind of layer of fat.- Mm-hm.
0:23:02 > 0:23:05- Sort of.- Can you get the musk?
0:23:06 > 0:23:08Yeah, kind of underlying that.
0:23:08 > 0:23:09Mm-hm.
0:23:09 > 0:23:11It needs to be stronger.
0:23:13 > 0:23:16Which one has the sweaty-feet mix in it?
0:23:16 > 0:23:18This one.
0:23:23 > 0:23:24- Gosh.- Try this one.
0:23:24 > 0:23:26That's the best I've smelt it.
0:23:31 > 0:23:33Smell them together.
0:23:35 > 0:23:37SHE CLEARS HER THROAT
0:23:40 > 0:23:43I don't think I could smell that again.
0:23:44 > 0:23:47Oh, yes. The base of that's good.
0:23:53 > 0:23:57Back in Perth, Joy is meeting up with two old friends.
0:23:57 > 0:23:59I think that one's super.
0:23:59 > 0:24:01Isn't she brilliant?
0:24:01 > 0:24:06Rena and Betty have been an important support for Joy
0:24:06 > 0:24:09as she's campaigned on Parkinson's.
0:24:09 > 0:24:12Rena's husband Ivan had the disease,
0:24:12 > 0:24:14as did Betty's John.
0:24:15 > 0:24:19These three women saw changes in their husbands
0:24:19 > 0:24:21well before they were diagnosed,
0:24:21 > 0:24:25not just smell but embarrassing things like constipation
0:24:25 > 0:24:29and impotence and, most difficult of all,
0:24:29 > 0:24:34gentle men suddenly troubled by depression and aggression.
0:24:34 > 0:24:38Although it only happened twice with us that Les lifted his hand to me,
0:24:38 > 0:24:43I do know that it was totally out of character.
0:24:43 > 0:24:46- Indeed. Mm-hm. - Totally out of character.
0:24:46 > 0:24:51- All of that is a long time before diagnosis.- Yes.
0:24:51 > 0:24:56I had that type of incident also, where he didn't actually hit me.
0:24:56 > 0:24:57I didn't get hit.
0:24:57 > 0:24:59I was very bruised in my arm,
0:24:59 > 0:25:02etc, and he had no idea.
0:25:02 > 0:25:07I mean, he was so apologetic afterwards, etc,
0:25:07 > 0:25:09and he really was...
0:25:09 > 0:25:13I mean, he was devastated that he'd got into a state.
0:25:13 > 0:25:15- I don't think they're aware. - He did not know...
0:25:15 > 0:25:17They don't realise it's happening, do they,
0:25:17 > 0:25:19probably until the last minute.
0:25:25 > 0:25:28Not everyone who has Parkinson's will see behaviour changes
0:25:28 > 0:25:31like John, Ivan and Les.
0:25:34 > 0:25:38And Les, in particular, also suffered from dementia,
0:25:38 > 0:25:41but what these women want is an open discussion
0:25:41 > 0:25:43of everything that can happen,
0:25:43 > 0:25:48to make sure families get support and the disease is spotted early.
0:25:48 > 0:25:50The kind of person he was,
0:25:50 > 0:25:54I know that he would have felt very embarrassed about it all,
0:25:54 > 0:25:59but at the same time, if he thought, by disclosure,
0:25:59 > 0:26:04one was going to be able to influence people
0:26:04 > 0:26:07who are having early signs,
0:26:07 > 0:26:10which are being ignored - or they are ignoring,
0:26:10 > 0:26:12- as our husbands did...- That's true.
0:26:12 > 0:26:15They ignored the early signs,
0:26:15 > 0:26:18I think if he thought it could do some good,
0:26:18 > 0:26:21- he would say, "Right, go for it."- Yes.
0:26:21 > 0:26:23Les's last six weeks,
0:26:23 > 0:26:25he started writing.
0:26:25 > 0:26:28He did it because he wanted medicine to know
0:26:28 > 0:26:33what had happened to him, and he knew they didn't.
0:26:33 > 0:26:37The repercussions of your standing up and saying,
0:26:37 > 0:26:41"I can smell Parkinson's," have not been in this country alone.
0:26:41 > 0:26:44- No.- It's worldwide. - It is worldwide. Yes.
0:26:44 > 0:26:48- People have joined us and said... - So we should be very privileged!
0:26:50 > 0:26:53To stand up and say it, I was frightened that day.
0:26:53 > 0:26:57- Even as a nurse, and with Les backing me...- Yes.
0:26:57 > 0:27:00..we knew it was the right thing to do.
0:27:00 > 0:27:05- But you did it, and look where we are now.- Where we are now.
0:27:08 > 0:27:13I think Joy really did kick-start an avenue of research
0:27:13 > 0:27:17that was, essentially, non-existent at the time.
0:27:20 > 0:27:22I'm really excited.
0:27:22 > 0:27:26I'm also incredibly humbled because, in the end,
0:27:26 > 0:27:32the story comes from Joy, who lived with Les for a very long time
0:27:32 > 0:27:34and now he isn't here any more.
0:27:36 > 0:27:39I think we're still at the beginning of it,
0:27:39 > 0:27:42but, I don't know, it's been an exciting journey,
0:27:42 > 0:27:44and I really look forward to see where it's going to lead
0:27:44 > 0:27:45to in the future.
0:27:48 > 0:27:52Having lived with Les,
0:27:52 > 0:27:56we were together 35 years of Parkinson's,
0:27:56 > 0:28:00we were married for 42 years when he died,
0:28:00 > 0:28:10so I don't want other families to have the same experience.
0:28:12 > 0:28:16I want relief for them.
0:28:16 > 0:28:22I want to see a better understanding within medicine,
0:28:22 > 0:28:28a better education for the general public,
0:28:28 > 0:28:32and the hope that, with early diagnosis,
0:28:32 > 0:28:36there is going to be treatment.