Transcripts For BBCNEWS The Woman Who Can Smell Parkinsons 20180113

Im doing it. How doesjoy do this . Could her ability really change the lives of people with parkinsons bbc scotland has been following the scientists who will answer those questions. Im really excited. Im 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 isnt here any more. Its 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. Shed taken her husband les, who had parkinsons disease, to a support group meeting. I was giving a talk about stem cells and parkinsons 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 joys voice. I have to say it was a truly out of body experience. I didnt hear a word anybody said during the meeting. Ive got to do this, ive got to do this. No, i cant do. Ive 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 parkinsons to diagnose earlier . Total silence. Tilo went back to his normal work on stem cells, but he couldnt stop thinking aboutjoys question and three weeks after the meeting, he decided to track her down. I found out her name wasjoy, joy milne from perth, and i got her phone number and i phoned herand asked her, why did you ask me that question . This is a very strange question to ask and we didnt 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 parkinsons. 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 parkinsons walk past her, etc, and having her blindfolded, but people with parkinsons have a particular shuffle, so eventually we settled on, lets get an article of clothing that people of parkinsons and people without parkinsons 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 parkinsons patients and six by volunteers without the disease. We were amazed at how accurate she was. She told us seven of these people had parkinsons and five of them didnt, so she was really, really accurate. So there was one person that didnt have parkinsons that she said had parkinsons, so that was her only mistake, so we thought 11 out of 12 is quite good. Well, tell me the numbers of how goo you were at working out who had what. Ii 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 parkinsons, butjoy was sure he had the condition. Maybe ten weeks, three months later bill phoned up and said, well, ive got parkinsons. And tilo went, ah that changes everything. She was telling us that this individual had parkinsons before he knew, before anybody knew, so then i really started to believe her, that she could really detect parkinsons simply by odour transferred onto a shirt that a person with parkinsons was wearing. A few months afterjoy passed the t shirt test, i brought her story to the world. Ive covered hundreds of stories over the years but this one was a bit different. It was incredible, almost unbelievable, and it was clear that joys story ha a massive impact on the millions of People Living across the world with this terrible disease. Joy knows only too well what parkinsons 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 werent 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 wasnt 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 a0 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 wont let this go, will you . Promise you will do it . Im doing it. Tilo had proved joy could smell parkinsons. The disease is the second most commo neurodegenerative the disease is the second most common neurodegenerative condition after alzheimers, but theres no cure and not even a test. Mightjoys 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. Thats a game changer if you can give someone a very accurate prediction if theyre on the verge of parkinsons based on molecular signatures on their skin. Tilo brought Perdita Barran on board. Shes an expert in chemical analysis shes trying to isolate the actual molecules that form the smell joy smelt. Perditas team have been collecting samples from patients with parkinsons and a control group of those without. They want to see if there are molecular signatures that only the parkinsons 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 weve eaten or how we are that day, but people with parkinsons have some different molecules. Thats what joys smelling and thats what were identifying here. So whats causing that smell . At first, researchers focused on the underarms of the sample t shirts, thinking it might be sweat, butjoy 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 parkinsons, where weve 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 parkinsons 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. Well see. Today, joy is in manchester to see perditas first set of results and theyre very encouraging. Each of these red bars represents a molecule only found in the parkinsons patients. Here we have ten features, ten molecules that are distinctive to that population, and so we think that those molecules may well be whatjoy is smelling, cos this type of analysis was most similar tojoys smell. How do you feel, looking at that . Right, yes, its 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 thats medical and scientific proof. Well, you are scientific proof, too, joy. Yes, i know. Its just that we know what these molecules are. Yes. And you just know it as a smell. What would les say . 0h, dont, dont. Hed really be pleased. The medical man. Well, thats the last six weeks of his life, thats what he wanted. Mm. Joy first noticed less smell 30 years before he died and ten years before he was diagnosed with parkinsons. It was a new smell, i didnt know what it was, i had not met it anywhere else, so it wasnt in my memory. I kept on thinking, goodness, this smell. I kept on saying to him, but youre not showering, whats 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 Parkinsons 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 parkinsons 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 0h,joy. And went home, and as soon as i was in the car, he said, well . I said, its amazing. Theres all different levels, but the smell is there. We wanted to know more aboutjoys sense of smell so we brought her to the worlds leading perfume school just outside paris. Shes come to be tested. So, joy, we will conduct with you the test were conducting with Young Students that we will hire in the perfumery school. 0k. Sojust be careful not to touch your nose, so you wont get contaminated. Joy is given samples of chemicals at very small concentrations. Initially, she does well. But what becomes clear is that as shes exposed to more and more smells at higher concentrations, her sense of smell becomes overwhelmed. Im. I found that very. Joy, a round of applause its difficult, its overwhelming and i know that youre 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, joys sense of smelljust cant 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 dont know where you will stand, but its the first time im 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, shejust said to me, youre somewhere between a human and a dog. 0k. That means exactly that, yeah. Entering joys world is entering a world dominated by smell. Her ability could revolutionise how we see parkinsons but every day, she faces the possibility of an almost impossible dilemma. Youve established that, yes, i can walk in a room of parkinsons 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 isnt there yet. Were going to be there soon, but it isnt there yet. Can you give me an example, then . There has been. Queries as ive walked past people, especially one in tescos. But he was a complete stranger. Ive been lucky that i havent come in contact too often. There was a woman who was saying she had problems, shed been to the doctor for this and that, and im thinking. She sniffs. And i got nearer this person and nearer this person, and i knew she had parkinsons. You knew she had parkinsons. 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 cant do anything . Well, we had the discussion, if. You were her gp and this woman turned up and said, the woman who can smell parkinsons tells me i have parkinsons, its not going to bode well for them, and it wasnt going to bode well for us and the research either. I know. Its terribly difficult. I live with it, but its terribly difficult. That fact thatjoy cant warn people makes it even more important to her that her ability leads to a reliable test, a test that could diagnose parkinsons early. In an unassuming Industrial Park outside cambridge, joy and perdita are hoping theyre about to take another step closer to achieving that. Joy is smelling samples from perditas study. Theyre 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 whetherjoy can distinguish the parkinsons smells from the samples that weve taken from patients as theyre separated, and if she smells it and presses a button to say shes smelt it, the mass spectrometer weighs it at the same time and well then know right away what that molecule is. Joy and the mass spectrometer pick out five key molecules associated with parkinsons. Theyre getting ever closer to understanding exactly whatjoy 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, thats it. God, youre a wonder, joy. Best weve done. It really is. And the background was less, or you screened out. . Ive got the background under control now. Here we are, from you in the parkinsons centre that you went to, to here, its amazing, isnt it . I mean, that time when you smelt les on other people, and now were here. Its sort of amazing. It is very humbling, as a mere measurement scientist, to help to find some signature molecules to diagnose parkinsons. It wouldnt have happened without joy, you know . Thats the most important thing. It wouldnt have happened without her, and so for all the serendipity it wasjoy 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 were beginning to do that. Its been worthwhile, then . Its been worthwhile, yeah. Yeah. Joy has met many remarkable people a she investigates her ability. Back in perth, joy is meeting up with two old friends. I think that ones super. Isnt she brilliant . Rena and betty have been an important support forjoy as shes campaigned on parkinsons. Renas husband ivan had the disease, as did bettys john. These three women saw changes in their husbands well before they were diagnosed, notjust 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 didnt actually hit me. I didnt 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 hed got into a state. I dont think theyre aware. He did not know. They dont realise its happening, do they, probably until the last minute. Not everyone who has parkinsons 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. Thats true. They ignored the early signs, i think if he thought it could do some good, he would say, right, go for it. Yes. Less last six weeks, he started writing. He did it because he wanted medicine to know what had happened to him, and he knew they didnt. The repercussions of your standing up and saying, i can smell parkinsons, have not been in this country alone. No. Its worldwide. It is worldwide. Yes. People havejoined 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 thinkjoy really did kick sta rt an avenue of research that was, essentially, non existent at the time. Im really excited. Im also incredibly humbled because, in the end, the story comes from joy, who lived with les for a very long time and now he isnt here any more. I think were still at the beginning of it, but, i dont know, its been an exciting journey, and i really look forward to see where its going to lead to in the future. Having lived with les, we were together 35 years of parkinsons, we were married for 42 years when he died, so i dont 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. Skies across the uk this afternoon fairly grey and uninspiring once again. Not much colour to brighten things up, but these guys will turn more blue next week. Some have also got the wet weather, palace of devon and cornwall, the west, a weather front sitting here, not moving anywhere in a hurry through the rest of today, maybe bursts of rain on southern facing hills, but notice how it fractured mens fragments. The ring gets pat you into the morning, most will be dry, staying cloudy to keep temperatures up, but any breaks in the cloud, a touch of frost and there will be mist and fog over the hills. It will be another great start for tomorrow, patchy rain and drizzle to the western fringes, but the cloud may break here and there, slightly better chance tomorrow that summer will see blue skies, particularly across scotla nd blue skies, particularly across scotland and Northern Ireland, as the wind picks up through the afternoon, temperatures may be down on todays. Here comes a change, we go into the evening across scotland and Northern Ireland with very wet and Northern Ireland with very wet and windy weather, possibly severe gales for a time, transferring to the western fringes overnight, maybe gales elsewhere as it is pushed to the south east, on the first part of the south east, on the first part of the morning. We will see brighter skies, but get ready for colder air and windy conditions, certainly a wet and windy start on monday for the computers in east anglia, that will clear, then sunny spells and a scattering of showers, some heavy and sundry in the west. Temperatures will drop further into tuesday and winds will remain strong, showers powering their way east, some becoming wintry as temperatures fall, a mixture of rain, sleet and snow, merely across northern areas. When tonight into thursday, you need to watch this area of low pressure. This could bring in bad conditions, how far north it gets is a big uncertainty, because we will also see a spell of snow, so it is a week to keep a close eye on conditions. There will be called the winds, much windier than we have seen in the past week and it will be cold enough for many to see a little bit of snow at some point. This is bbc news. The headlines at 3pm. Ministers are urged not to bail out the troubled construction company, carillion, as the bbc understands high level government meetings are to take place this weekend. It cant possiblyjust bail out the company because then you have a position where the private sector is allowed to privatise profits but then the government nationalises the losses a problem we had with the banks. The African Union demands an apology from President Trump for derogatory remarks he reportedly made about the continent. Warnings of a tooth decay crisis amongst children in england. A record 43,000 operations to remove rotting teeth were carried out last year. Also in the next hour. Tributes are paid to bella emberg, who has died at the age of 80