1 00:00:04,000 --> 00:00:07,040 This is the woman who can smell Parkinson's. 2 00:00:08,200 --> 00:00:11,720 That may sound impossible, but it's true. 3 00:00:11,720 --> 00:00:13,800 She was telling us 4 00:00:13,800 --> 00:00:17,280 that this individual had Parkinson's before he knew, 5 00:00:17,280 --> 00:00:20,960 before anybody knew, so then I really started to believe her, 6 00:00:20,960 --> 00:00:23,600 that she could really detect Parkinson's. 7 00:00:23,600 --> 00:00:29,000 But this is also a story about one woman's promise to her dying husband. 8 00:00:29,000 --> 00:00:31,840 He said to me, "You won't let this go, will you? 9 00:00:31,840 --> 00:00:33,600 "You promise you will do it?" 10 00:00:37,680 --> 00:00:40,000 I'm doing it. 11 00:00:40,000 --> 00:00:42,520 How does Joy do this? 12 00:00:42,520 --> 00:00:47,480 Could her ability really change the lives of people with Parkinson's? 13 00:00:47,480 --> 00:00:51,200 BBC Scotland has been following the scientists 14 00:00:51,200 --> 00:00:53,440 who will answer those questions. 15 00:00:54,760 --> 00:00:56,200 I'm really excited. 16 00:00:56,200 --> 00:00:58,720 I'm also incredibly humbled 17 00:00:58,720 --> 00:01:01,160 because in the end these come 18 00:01:01,160 --> 00:01:03,400 from patients and the story comes 19 00:01:03,400 --> 00:01:05,920 from Joy who lived with Les 20 00:01:05,920 --> 00:01:07,400 for a very long time 21 00:01:07,400 --> 00:01:09,160 and now he isn't here any more. 22 00:01:11,640 --> 00:01:14,120 It's an amazing story, 23 00:01:14,120 --> 00:01:17,520 offering hope to millions of people around the globe. 24 00:01:29,160 --> 00:01:32,200 It was a really strange sensation that day. 25 00:01:35,560 --> 00:01:38,720 I have to take a deep breath every time I come in this room. 26 00:01:40,920 --> 00:01:42,880 I could smell it all around me. 27 00:01:44,800 --> 00:01:49,200 Joy Milne is remembering the moment that changed her life. 28 00:01:49,200 --> 00:01:54,360 She'd taken her husband Les, who had Parkinson's disease, 29 00:01:54,360 --> 00:01:56,720 to a support group meeting. 30 00:01:56,720 --> 00:02:00,600 I was giving a talk about stem cells and Parkinson's disease 31 00:02:00,600 --> 00:02:03,840 in our institute here 32 00:02:03,840 --> 00:02:05,360 and at the end of the talk 33 00:02:05,360 --> 00:02:07,240 I entertained some questions 34 00:02:07,240 --> 00:02:12,040 as I would normally do and this was when I first heard Joy's voice. 35 00:02:12,040 --> 00:02:16,480 I have to say it was a truly out-of-body experience. 36 00:02:16,480 --> 00:02:19,960 I didn't hear a word anybody said during the meeting. 37 00:02:19,960 --> 00:02:22,960 "I've got to do this, I've got to do this. No, I can't do... 38 00:02:22,960 --> 00:02:24,800 "I've got to do this." 39 00:02:24,800 --> 00:02:29,080 And I kept on saying to myself, "I have got to stand up and say this," 40 00:02:29,080 --> 00:02:32,240 and the next thing my knees locked and I was standing up... 41 00:02:33,280 --> 00:02:34,520 ..and my sentence, I said, 42 00:02:34,520 --> 00:02:38,640 "Why are we not using the smell of Parkinson's to diagnose earlier?" 43 00:02:42,440 --> 00:02:43,720 Total silence. 44 00:02:49,280 --> 00:02:53,320 Tilo went back to his normal work on stem cells, 45 00:02:53,320 --> 00:02:57,600 but he couldn't stop thinking about Joy's question 46 00:02:57,600 --> 00:03:02,040 and three weeks after the meeting, he decided to track her down. 47 00:03:02,040 --> 00:03:05,080 I found out her name was Joy, Joy Milne from Perth, 48 00:03:05,080 --> 00:03:11,560 and I got her phone number and I phoned her and asked her, 49 00:03:11,560 --> 00:03:13,360 "Why did you ask me that question? 50 00:03:13,360 --> 00:03:15,040 "This is a very strange question to ask 51 00:03:15,040 --> 00:03:18,640 "and we didn't get to speak about it after the lecture." 52 00:03:18,640 --> 00:03:24,160 And then she went into her story that her husband Les started 53 00:03:24,160 --> 00:03:29,640 having a change in odour well before he had any signs of Parkinson's. 54 00:03:29,640 --> 00:03:34,160 Once Tilo had found Joy, he needed to test her to see 55 00:03:34,160 --> 00:03:38,240 if her seemingly impossible claim could be true. 56 00:03:38,240 --> 00:03:43,000 I consulted with a few people and there was ideas of having people 57 00:03:43,000 --> 00:03:47,440 with Parkinson's walk past her, etc, and having her blindfolded, 58 00:03:47,440 --> 00:03:50,360 but people with Parkinson's have a particular shuffle, 59 00:03:50,360 --> 00:03:55,880 so eventually we settled on, "Let's get an article of clothing 60 00:03:55,880 --> 00:03:59,640 "that people of Parkinson's and people without Parkinson's wore," 61 00:03:59,640 --> 00:04:03,840 and then we would just give Joy the articles of clothing, 62 00:04:03,840 --> 00:04:06,800 so not meet the person, not be anywhere near the person, 63 00:04:06,800 --> 00:04:08,600 just something that the person wore. 64 00:04:08,600 --> 00:04:12,080 So Joy was given 12 T-shirts to smell - 65 00:04:12,080 --> 00:04:14,720 six worn by Parkinson's patients 66 00:04:14,720 --> 00:04:17,720 and six by volunteers without the disease. 67 00:04:17,720 --> 00:04:21,000 We were amazed at how accurate she was. 68 00:04:21,000 --> 00:04:24,360 She told us seven of these people had Parkinson's 69 00:04:24,360 --> 00:04:28,360 and five of them didn't, so she was really, really accurate. 70 00:04:28,360 --> 00:04:30,800 So there was one person that didn't have Parkinson's 71 00:04:30,800 --> 00:04:33,400 that she said had Parkinson's, so that was her only mistake, 72 00:04:33,400 --> 00:04:37,080 so we thought 11 out of 12 is quite good. 73 00:04:37,080 --> 00:04:41,400 Well, tell me the numbers of how good you were at working out who had what. 74 00:04:41,400 --> 00:04:45,160 11 I got right and of course there was this one in the wind... 75 00:04:46,880 --> 00:04:50,160 ..that, you know, we disagreed with. 76 00:04:52,000 --> 00:04:54,080 That one result was a T-shirt 77 00:04:54,080 --> 00:04:57,080 worn by a member of the control group, Bill. 78 00:04:57,080 --> 00:05:00,520 He had not been diagnosed with Parkinson's, 79 00:05:00,520 --> 00:05:02,800 but Joy was sure he had the condition. 80 00:05:04,000 --> 00:05:07,440 Maybe ten weeks, three months later Bill phoned up and said, 81 00:05:07,440 --> 00:05:10,040 "Well, I've got Parkinson's." 82 00:05:10,040 --> 00:05:14,920 And Tilo went, "Ah! That changes everything." 83 00:05:14,920 --> 00:05:18,520 She was telling us that this individual had Parkinson's 84 00:05:18,520 --> 00:05:21,080 before he knew, before anybody knew, 85 00:05:21,080 --> 00:05:23,200 so then I really started to believe her, 86 00:05:23,200 --> 00:05:26,640 that she could really detect Parkinson's simply by odour 87 00:05:26,640 --> 00:05:29,680 transferred onto a shirt that a person with Parkinson's was wearing. 88 00:05:35,760 --> 00:05:39,120 A few months after Joy passed the T-shirt test, 89 00:05:39,120 --> 00:05:42,520 I brought her story to the world. 90 00:05:42,520 --> 00:05:46,200 I've covered hundreds of stories over the years 91 00:05:46,200 --> 00:05:48,880 but this one was a bit different. 92 00:05:48,880 --> 00:05:52,360 It was incredible, almost unbelievable, 93 00:05:52,360 --> 00:05:58,120 and it was clear that Joy's story had a massive impact on the millions 94 00:05:58,120 --> 00:06:02,360 of people living across the world with this terrible disease. 95 00:06:09,840 --> 00:06:11,720 Joy knows only too well 96 00:06:11,720 --> 00:06:16,440 what Parkinson's disease means for patients and their families. 97 00:06:16,440 --> 00:06:21,280 Her husband Les was diagnosed with the illness in his mid-40s. 98 00:06:21,280 --> 00:06:24,120 Les and Joy loved to travel. 99 00:06:24,120 --> 00:06:28,720 He was a consultant anaesthetist, Joy was a nurse and lecturer. 100 00:06:28,720 --> 00:06:32,560 They met in their teens and built a life together. 101 00:06:32,560 --> 00:06:35,400 Even as two medical people, 102 00:06:35,400 --> 00:06:39,160 we weren't prepared for what was about to happen. 103 00:06:39,160 --> 00:06:42,480 Les had always been sporty, playing water polo, 104 00:06:42,480 --> 00:06:47,120 swimming for Scotland and he was a keen golfer. 105 00:06:47,120 --> 00:06:51,120 He had had to give up his golf, he loved his golf. 106 00:06:51,120 --> 00:06:56,200 His friends still took him out in the buggy, but it wasn't the same. 107 00:06:58,040 --> 00:07:01,080 Les died at the age of 65. 108 00:07:01,080 --> 00:07:04,880 By the end, there was little he could do for himself. 109 00:07:04,880 --> 00:07:11,920 He weeded our pathways and our garden and after he died, 110 00:07:11,920 --> 00:07:16,280 it was one of my bad days, cos there was weeds everywhere. 111 00:07:17,960 --> 00:07:23,920 You know, and I thought, yes, it was one of the really... 112 00:07:25,200 --> 00:07:28,120 It was one of his sanity things. 113 00:07:28,120 --> 00:07:30,440 I could see him go and get the bucket 114 00:07:30,440 --> 00:07:32,520 and he knew he could do that. 115 00:07:36,040 --> 00:07:41,560 Joy had spent over 40 years with Les and her last promise to him was that 116 00:07:41,560 --> 00:07:47,280 she would investigate her special ability and how it might help others. 117 00:07:47,280 --> 00:07:50,440 He said to me, "You won't let this go, will you? 118 00:07:50,440 --> 00:07:51,960 "Promise you will do it?" 119 00:07:56,480 --> 00:07:57,480 I'm doing it. 120 00:08:06,560 --> 00:08:09,960 Tilo had proved Joy could smell Parkinson's. 121 00:08:09,960 --> 00:08:14,680 The disease is the second most common neurodegenerative condition 122 00:08:14,680 --> 00:08:19,240 after Alzheimer's, but there's no cure and not even a test. 123 00:08:19,240 --> 00:08:21,800 Might Joy's ability help change that? 124 00:08:23,200 --> 00:08:25,840 So you can imagine a small collection 125 00:08:25,840 --> 00:08:27,720 of fairly inexpensive tests 126 00:08:27,720 --> 00:08:31,520 and a skin swab for an odour would be very inexpensive. 127 00:08:31,520 --> 00:08:33,240 That's a game-changer - 128 00:08:33,240 --> 00:08:35,760 if you can give someone a very accurate prediction 129 00:08:35,760 --> 00:08:37,400 if they're on the verge of Parkinson's 130 00:08:37,400 --> 00:08:41,920 based on molecular signatures on their skin. 131 00:08:47,640 --> 00:08:50,560 Tilo brought Perdita Barran on board. 132 00:08:50,560 --> 00:08:53,480 She's an expert in chemical analysis. 133 00:08:54,640 --> 00:08:57,440 She's trying to isolate the actual molecules 134 00:08:57,440 --> 00:09:00,000 that form the smell Joy smelt. 135 00:09:01,560 --> 00:09:04,280 Perdita's team have been collecting samples 136 00:09:04,280 --> 00:09:06,320 from patients with Parkinson's 137 00:09:06,320 --> 00:09:08,520 and a control group of those without. 138 00:09:10,720 --> 00:09:13,960 They want to see if there are molecular signatures 139 00:09:13,960 --> 00:09:16,480 that only the Parkinson's patients have. 140 00:09:16,480 --> 00:09:20,600 Perdita is running the samples through a mass spectrometer - 141 00:09:20,600 --> 00:09:24,440 a device that isolates and weighs individual molecules. 142 00:09:24,440 --> 00:09:26,520 Most of the molecules will be the same. 143 00:09:26,520 --> 00:09:29,320 Most people have a lot of the same metabolites, 144 00:09:29,320 --> 00:09:31,680 based on what we've eaten or how we are that day, 145 00:09:31,680 --> 00:09:34,920 but people with Parkinson's have some different molecules. 146 00:09:34,920 --> 00:09:36,360 That's what Joy's smelling 147 00:09:36,360 --> 00:09:38,360 and that's what we're identifying here. 148 00:09:38,360 --> 00:09:41,520 So what's causing that smell? 149 00:09:41,520 --> 00:09:46,600 At first, researchers focused on the underarms of the sample T-shirts, 150 00:09:46,600 --> 00:09:48,960 thinking it might be sweat, 151 00:09:48,960 --> 00:09:52,880 but Joy found the smell was strongest at the neck. 152 00:09:52,880 --> 00:09:56,240 That suggested that the smell came from sebum, 153 00:09:56,240 --> 00:09:59,240 an oily substance we secrete on our skin. 154 00:09:59,240 --> 00:10:04,120 And that fits Parkinson's, where we've known for 200 years 155 00:10:04,120 --> 00:10:07,680 that waxy skin was associated with the disease. 156 00:10:11,360 --> 00:10:15,760 Perdita and Joy are hoping that as they learn more about the smell, 157 00:10:15,760 --> 00:10:19,760 it might lead to more than just a test, it could tell us 158 00:10:19,760 --> 00:10:24,680 much more about the early stages of Parkinson's itself. 159 00:10:24,680 --> 00:10:28,680 Can we find out enough about the very early stages of the disease 160 00:10:28,680 --> 00:10:30,320 that we could... 161 00:10:30,320 --> 00:10:34,320 Then we... Drug companies could develop some medication 162 00:10:34,320 --> 00:10:38,680 that would really prevent the devastating effects. 163 00:10:38,680 --> 00:10:41,400 So far we can only alleviate them for some time, 164 00:10:41,400 --> 00:10:44,040 but if we could prevent them, that would be wonderful. 165 00:10:44,040 --> 00:10:45,240 We'll see. 166 00:10:46,400 --> 00:10:52,040 Today, Joy is in Manchester to see Perdita's first set of results 167 00:10:52,040 --> 00:10:54,320 and they're very encouraging. 168 00:10:54,320 --> 00:10:57,520 Each of these red bars represents a molecule 169 00:10:57,520 --> 00:11:00,320 only found in the Parkinson's patients. 170 00:11:00,320 --> 00:11:02,680 Here we have ten features, 171 00:11:02,680 --> 00:11:06,600 ten molecules that are distinctive to that population, 172 00:11:06,600 --> 00:11:12,760 and so we think that those molecules may well be what Joy is smelling, 173 00:11:12,760 --> 00:11:15,760 cos this type of analysis was most similar to Joy's smell. 174 00:11:15,760 --> 00:11:17,840 How do you feel, looking at that? 175 00:11:19,680 --> 00:11:24,280 Right, yes, it's real. This is very, very real. 176 00:11:24,280 --> 00:11:29,760 Now you knew, you felt it was real anyway... Oh, yes. 177 00:11:29,760 --> 00:11:31,960 ..but now you can see the results there. 178 00:11:31,960 --> 00:11:35,240 But that's medical and scientific proof. 179 00:11:36,680 --> 00:11:40,760 Well, you are scientific proof, too, Joy. Yes, I know. 180 00:11:40,760 --> 00:11:43,440 It's just that we know what these molecules are... Yes. 181 00:11:43,440 --> 00:11:45,920 ..and you just know it as a smell. What would Les say? 182 00:11:45,920 --> 00:11:48,520 Oh, don't, don't... 183 00:11:50,320 --> 00:11:53,440 He'd really be pleased. The medical man. 184 00:11:53,440 --> 00:11:57,480 Well, that's the last six weeks of his life, that's what he wanted. 185 00:11:59,080 --> 00:12:00,080 Mm. 186 00:12:07,080 --> 00:12:11,520 Joy first noticed Les's smell 30 years before he died 187 00:12:11,520 --> 00:12:15,840 and ten years before he was diagnosed with Parkinson's. 188 00:12:15,840 --> 00:12:18,720 It was a new smell, I didn't know what it was, 189 00:12:18,720 --> 00:12:23,400 I had not met it anywhere else, so it wasn't in my memory. 190 00:12:23,400 --> 00:12:27,520 I kept on thinking, "Goodness, this smell." 191 00:12:27,520 --> 00:12:29,040 I kept on saying to him, 192 00:12:29,040 --> 00:12:32,920 "But you're not showering, what's wrong? What are you doing?" 193 00:12:32,920 --> 00:12:36,840 And he became quite upset about it. 194 00:12:36,840 --> 00:12:40,720 He really did, so I just had to be quiet. 195 00:12:40,720 --> 00:12:46,720 But after Les was diagnosed, he joined a Parkinson's support group 196 00:12:46,720 --> 00:12:49,400 and Joy made a surprising discovery. 197 00:12:50,600 --> 00:12:53,920 We sat down, we were having a cup of tea and I said to him, 198 00:12:53,920 --> 00:12:56,560 "Those people smell the same as you." 199 00:12:56,560 --> 00:12:58,960 And he said, "What? What are you talking about?" 200 00:12:58,960 --> 00:13:04,800 I said, "The people with Parkinson's in that room smelt the same as you." 201 00:13:06,600 --> 00:13:12,400 So he looked at me and he said, "We have to go back and do this again." 202 00:13:12,400 --> 00:13:16,520 Being the doctor, have to have more proof! 203 00:13:16,520 --> 00:13:19,320 And then I started going round thinking, 204 00:13:19,320 --> 00:13:21,240 "Would you like a chocolate biscuit?" 205 00:13:21,240 --> 00:13:23,320 SHE SNIFFS 206 00:13:23,320 --> 00:13:24,600 Oh, Joy. 207 00:13:26,560 --> 00:13:31,280 And went home, and as soon as I was in the car, 208 00:13:31,280 --> 00:13:34,640 he said, "Well?" I said, "It's amazing. 209 00:13:36,320 --> 00:13:41,600 "There's all different levels but the smell is there." 210 00:13:49,560 --> 00:13:53,760 We wanted to know more about Joy's sense of smell so we brought her 211 00:13:53,760 --> 00:13:58,000 to the world's leading perfume school just outside Paris. 212 00:13:58,000 --> 00:14:00,360 She's come to be tested. 213 00:14:00,360 --> 00:14:04,200 So, Joy, we will conduct with you the test 214 00:14:04,200 --> 00:14:07,800 we're conducting with young students that we will hire 215 00:14:07,800 --> 00:14:09,160 in the perfumery school. 216 00:14:12,120 --> 00:14:13,840 OK. 217 00:14:13,840 --> 00:14:17,760 So just be careful not to touch your nose, so you won't get contaminated. 218 00:14:19,120 --> 00:14:24,240 Joy is given samples of chemicals at very small concentrations. 219 00:14:24,240 --> 00:14:26,120 Initially, she does well... 220 00:14:28,760 --> 00:14:32,760 ..but what becomes clear is that as she's exposed to more and more 221 00:14:32,760 --> 00:14:38,320 smells at higher concentrations, her sense of smell becomes overwhelmed. 222 00:14:42,320 --> 00:14:44,600 I'm... I found that very... 223 00:14:44,600 --> 00:14:49,840 Joy, a round of applause - it's difficult, it's overwhelming 224 00:14:49,840 --> 00:14:52,680 and I know that you're very used to smelling 225 00:14:52,680 --> 00:14:54,200 very, very mild differences 226 00:14:54,200 --> 00:14:56,800 and here it we can be overwhelming 227 00:14:56,800 --> 00:15:01,680 and you have to be brave to go up to the end with all those smells. 228 00:15:01,680 --> 00:15:04,480 You will recover! Thank you. 229 00:15:07,720 --> 00:15:11,800 What the tests prove is that, unlike the other students here, 230 00:15:11,800 --> 00:15:16,320 Joy's sense of smell just can't cope with strong samples. 231 00:15:16,320 --> 00:15:20,040 Her nose is, if anything, too sensitive. 232 00:15:20,040 --> 00:15:24,120 I think you are part of a very, very tiny percentage of the 233 00:15:24,120 --> 00:15:26,880 population that is, first, 234 00:15:26,880 --> 00:15:30,320 extremely sensitive at the low level of a smell. 235 00:15:30,320 --> 00:15:34,800 Yes. And that is doubled by another capacity that is extremely rare, 236 00:15:34,800 --> 00:15:37,040 of paying attention to it. Yes. 237 00:15:37,040 --> 00:15:41,160 In terms of the population range, I don't know where you will stand, 238 00:15:41,160 --> 00:15:45,320 but it's the first time I'm meeting someone like that. For sure. 239 00:15:45,320 --> 00:15:49,880 Professor Perdita Barran, when she was looking at how I was smelling 240 00:15:49,880 --> 00:15:52,520 and how the results were coming on the spectrometer, 241 00:15:52,520 --> 00:15:53,840 she just said to me, 242 00:15:53,840 --> 00:15:56,320 "You're somewhere between a human and a dog." 243 00:15:56,320 --> 00:15:59,080 OK. That means exactly that, yeah. 244 00:16:02,160 --> 00:16:05,880 Joy's time at Givaudan has confirmed she's special, 245 00:16:05,880 --> 00:16:12,080 and that her special sense of smell is a key part of what makes Joy Joy. 246 00:16:12,080 --> 00:16:16,880 My experience of life is that I smell everything 247 00:16:16,880 --> 00:16:20,040 as I go through anywhere. All day. 248 00:16:20,040 --> 00:16:21,840 I just smell things. 249 00:16:21,840 --> 00:16:24,120 And sometimes I waken up in the morning 250 00:16:24,120 --> 00:16:26,800 and I haven't opened my eyes and I smell. 251 00:16:26,800 --> 00:16:28,680 And that's what I do, 252 00:16:28,680 --> 00:16:31,880 because I want to see how... 253 00:16:31,880 --> 00:16:34,400 ..how things are around me. 254 00:16:43,880 --> 00:16:48,360 Entering Joy's world is entering a world dominated by smell. 255 00:16:48,360 --> 00:16:52,400 Her ability could revolutionise how we see Parkinson's, 256 00:16:52,400 --> 00:16:53,840 but every day, 257 00:16:53,840 --> 00:16:58,560 she faces the possibility of an almost impossible dilemma. 258 00:16:58,560 --> 00:17:05,520 You've established that, yes, I can walk in a room of Parkinson's people 259 00:17:05,520 --> 00:17:08,240 and I can smell it, 260 00:17:08,240 --> 00:17:11,760 both in Perth, Glasgow, in Edinburgh. 261 00:17:14,000 --> 00:17:16,960 Can you smell it other places, though? 262 00:17:16,960 --> 00:17:19,040 Yes, I have. 263 00:17:19,040 --> 00:17:21,240 Ethically, I cannot tell somebody, 264 00:17:21,240 --> 00:17:23,520 because, 265 00:17:23,520 --> 00:17:25,240 um... 266 00:17:25,240 --> 00:17:27,400 The test isn't there yet. 267 00:17:27,400 --> 00:17:29,240 We're going to be there soon, 268 00:17:29,240 --> 00:17:31,400 but it isn't there yet. 269 00:17:31,400 --> 00:17:36,680 Can you give me an example, then? There has been...queries 270 00:17:36,680 --> 00:17:39,720 as I've walked past people, 271 00:17:39,720 --> 00:17:42,240 especially one in Tesco's. 272 00:17:42,240 --> 00:17:44,680 But he was a complete stranger. 273 00:17:44,680 --> 00:17:48,440 I've been lucky that I haven't come in contact too often. 274 00:17:48,440 --> 00:17:51,200 There was a woman who was saying she had problems, 275 00:17:51,200 --> 00:17:53,920 she'd been to the doctor for this and that, and I'm thinking... 276 00:17:53,920 --> 00:17:55,480 SHE SNIFFS 277 00:17:55,480 --> 00:17:58,800 ..and I got nearer this person and nearer this person, 278 00:17:58,800 --> 00:18:00,840 and I knew she had Parkinson's. 279 00:18:00,840 --> 00:18:03,040 You knew she had Parkinson's. 280 00:18:03,040 --> 00:18:04,480 Yes. 281 00:18:04,480 --> 00:18:07,400 From what she was saying to her friends about what was 282 00:18:07,400 --> 00:18:11,960 happening to her, and I got close enough. 283 00:18:15,760 --> 00:18:19,040 But, ethically, you think you can't do anything? 284 00:18:19,040 --> 00:18:21,160 Well, we had the discussion, 285 00:18:21,160 --> 00:18:22,640 if... 286 00:18:22,640 --> 00:18:26,440 you were her GP and this woman turned up and said, 287 00:18:26,440 --> 00:18:29,400 "The woman who can smell Parkinson's tells me 288 00:18:29,400 --> 00:18:31,360 "I have Parkinson's," 289 00:18:31,360 --> 00:18:34,160 it's not going to bode well for them, 290 00:18:34,160 --> 00:18:36,440 and it wasn't going to bode well for us 291 00:18:36,440 --> 00:18:38,040 and the research either. 292 00:18:39,840 --> 00:18:42,000 I know. It's terribly difficult. 293 00:18:42,000 --> 00:18:44,440 I live with it, but it's terribly difficult. 294 00:18:47,400 --> 00:18:52,040 That fact that Joy can't warn people makes it even more important to her 295 00:18:52,040 --> 00:18:56,200 that her ability leads to a reliable test, 296 00:18:56,200 --> 00:18:59,640 a test that could diagnose Parkinson's early. 297 00:19:05,480 --> 00:19:09,520 In an unassuming industrial park outside Cambridge, 298 00:19:09,520 --> 00:19:13,120 Joy and Perdita are hoping they're about to take another 299 00:19:13,120 --> 00:19:15,400 step closer to achieving that. 300 00:19:18,120 --> 00:19:21,680 Joy is smelling samples from Perdita's study. 301 00:19:21,680 --> 00:19:24,120 They're taken from real patients. 302 00:19:25,560 --> 00:19:32,200 At the same time, a mass spectrometer is analysing exactly the same sample. 303 00:19:32,200 --> 00:19:36,280 So, the purpose of this experiment is to see whether Joy can 304 00:19:36,280 --> 00:19:39,840 distinguish the Parkinson's smells from the samples that we've 305 00:19:39,840 --> 00:19:42,240 taken from patients as they're separated, 306 00:19:42,240 --> 00:19:44,960 and if she smells it and presses a button 307 00:19:44,960 --> 00:19:46,520 to say she's smelt it, 308 00:19:46,520 --> 00:19:48,680 the mass spectrometer weighs it at the same time 309 00:19:48,680 --> 00:19:51,080 and we'll then know right away what that molecule is. 310 00:19:55,720 --> 00:19:59,800 Joy and the mass spectrometer pick out five key molecules 311 00:19:59,800 --> 00:20:02,120 associated with Parkinson's. 312 00:20:04,160 --> 00:20:08,160 They're getting ever closer to understanding exactly what Joy 313 00:20:08,160 --> 00:20:09,920 is smelling. 314 00:20:13,160 --> 00:20:14,920 Yes, that was really exciting. 315 00:20:14,920 --> 00:20:18,040 It was right there in the middle, right there in the middle. 316 00:20:18,040 --> 00:20:20,280 So I had five smells there. 317 00:20:20,280 --> 00:20:23,840 I had two bottom, the base ones, and then I got three. 318 00:20:23,840 --> 00:20:27,160 And then, of course, that bit, I kind of... 319 00:20:27,160 --> 00:20:29,160 Oh, that's it. 320 00:20:29,160 --> 00:20:31,040 That was... 321 00:20:31,040 --> 00:20:33,320 God, you're a wonder, Joy. 322 00:20:33,320 --> 00:20:34,800 Best we've done. It really is. 323 00:20:34,800 --> 00:20:37,480 And the background was less, or you screened out...? 324 00:20:37,480 --> 00:20:40,000 I've got the background under control now. 325 00:20:40,000 --> 00:20:43,440 Here we are, from you in the Parkinson's centre that you went to, 326 00:20:43,440 --> 00:20:45,520 to here, it's amazing, isn't it? 327 00:20:45,520 --> 00:20:48,680 I mean, that time when you smelt Les on other people, 328 00:20:48,680 --> 00:20:51,800 and now we're here. It's sort of amazing. 329 00:20:51,800 --> 00:20:57,400 It is very humbling, as a mere measurement scientist, 330 00:20:57,400 --> 00:21:01,320 to help to find some signature molecules 331 00:21:01,320 --> 00:21:03,360 to diagnose Parkinson's. 332 00:21:03,360 --> 00:21:05,680 It wouldn't have happened without Joy, you know? 333 00:21:05,680 --> 00:21:07,520 That's the most important thing. 334 00:21:07,520 --> 00:21:09,320 It wouldn't have happened without her, 335 00:21:09,320 --> 00:21:12,640 and so for all the serendipity it was Joy and Les 336 00:21:12,640 --> 00:21:16,200 who were absolutely convinced that what she could smell 337 00:21:16,200 --> 00:21:19,520 would be something that could be used in a clinical context, 338 00:21:19,520 --> 00:21:22,240 and so now we're beginning to do that. 339 00:21:22,240 --> 00:21:23,600 It's been worthwhile, then? 340 00:21:23,600 --> 00:21:26,720 It's been worthwhile, yeah. Yeah. 341 00:21:35,760 --> 00:21:41,400 Joy has met many remarkable people as she investigates her ability. 342 00:21:41,400 --> 00:21:44,040 One is Susana Camara Leret. 343 00:21:44,040 --> 00:21:47,040 She's an artist who's interested in smell, 344 00:21:47,040 --> 00:21:50,880 and she's convinced Joy's ability is about more than just 345 00:21:50,880 --> 00:21:52,400 a remarkable nose. 346 00:21:54,160 --> 00:21:57,440 What's very unique about Joy is that she was a nurse 347 00:21:57,440 --> 00:22:02,760 and she was exposed to many smells that are, you know, 348 00:22:02,760 --> 00:22:06,200 linked to different illnesses and different changes in the body 349 00:22:06,200 --> 00:22:09,520 and because of that, she has a different relationship to 350 00:22:09,520 --> 00:22:12,360 these kind of odours that might play a very important role 351 00:22:12,360 --> 00:22:15,400 in understanding how smell could be used as a biomarker, 352 00:22:15,400 --> 00:22:18,360 for example, to detect different diseases, 353 00:22:18,360 --> 00:22:22,680 or to understand the way that the body changes through them. 354 00:22:24,400 --> 00:22:26,520 When Susana approached Joy, 355 00:22:26,520 --> 00:22:31,200 she offered to work on building Les's smell up from scratch. 356 00:22:31,200 --> 00:22:36,080 Today, they're sampling some of the powerful musky elements of the odour. 357 00:22:36,080 --> 00:22:38,920 They agreed to share what they've got so far 358 00:22:38,920 --> 00:22:41,360 with my delicate nose. 359 00:22:41,360 --> 00:22:46,000 So, this is based on some of the compounds that we smelled 360 00:22:46,000 --> 00:22:50,080 that Joy identified as the muskiness that she could smell, 361 00:22:50,080 --> 00:22:51,600 but also the fattiness. 362 00:22:51,600 --> 00:22:53,880 There's this kind of oily smell, 363 00:22:53,880 --> 00:22:55,880 probably because of the sebum. 364 00:22:55,880 --> 00:22:58,520 I feel like a whisky-taster here. 365 00:23:00,560 --> 00:23:03,240 A kind of layer of fat. Mm-hm. 366 00:23:03,240 --> 00:23:05,560 Sort of. Can you get the musk? 367 00:23:06,640 --> 00:23:08,640 Yeah, kind of underlying that. 368 00:23:08,640 --> 00:23:10,000 Mm-hm. 369 00:23:10,000 --> 00:23:11,840 It needs to be stronger. 370 00:23:14,360 --> 00:23:17,320 Which one has the sweaty-feet mix in it? 371 00:23:17,320 --> 00:23:18,800 This one. 372 00:23:23,720 --> 00:23:25,160 Gosh. Try this one. 373 00:23:25,160 --> 00:23:27,160 That's the best I've smelt it. 374 00:23:31,560 --> 00:23:33,840 Smell them together. 375 00:23:35,560 --> 00:23:37,480 SHE CLEARS HER THROAT 376 00:23:41,280 --> 00:23:43,960 I don't think I could smell that again. 377 00:23:45,360 --> 00:23:47,840 Oh, yes. The base of that's good. 378 00:23:53,880 --> 00:23:57,960 Back in Perth, Joy is meeting up with two old friends. 379 00:23:57,960 --> 00:23:59,840 I think that one's super. 380 00:23:59,840 --> 00:24:02,400 Isn't she brilliant? 381 00:24:02,400 --> 00:24:07,120 Rena and Betty have been an important support for Joy 382 00:24:07,120 --> 00:24:09,760 as she's campaigned on Parkinson's. 383 00:24:09,760 --> 00:24:12,920 Rena's husband Ivan had the disease, 384 00:24:12,920 --> 00:24:14,480 as did Betty's John. 385 00:24:16,440 --> 00:24:20,200 These three women saw changes in their husbands 386 00:24:20,200 --> 00:24:22,360 well before they were diagnosed, 387 00:24:22,360 --> 00:24:25,800 not just smell but embarrassing things like constipation 388 00:24:25,800 --> 00:24:29,760 and impotence and, most difficult of all, 389 00:24:29,760 --> 00:24:34,600 gentle men suddenly troubled by depression and aggression. 390 00:24:34,600 --> 00:24:39,200 Although it only happened twice with us that Les lifted his hand to me, 391 00:24:39,200 --> 00:24:44,080 I do know that it was totally out of character. 392 00:24:44,080 --> 00:24:47,120 Indeed. Mm-hm. Totally out of character. 393 00:24:47,120 --> 00:24:51,800 All of that is a long time before diagnosis. Yes. 394 00:24:51,800 --> 00:24:56,920 I had that type of incident also, where he didn't actually hit me. 395 00:24:56,920 --> 00:24:58,120 I didn't get hit. 396 00:24:58,120 --> 00:25:00,400 I was very bruised in my arm, 397 00:25:00,400 --> 00:25:03,160 etc, and he had no idea. 398 00:25:03,160 --> 00:25:07,960 I mean, he was so apologetic afterwards, etc, 399 00:25:07,960 --> 00:25:10,120 and he really was... 400 00:25:10,120 --> 00:25:13,600 I mean, he was devastated that he'd got into a state. 401 00:25:13,600 --> 00:25:16,000 I don't think they're aware. He did not know... 402 00:25:16,000 --> 00:25:18,200 They don't realise it's happening, do they, 403 00:25:18,200 --> 00:25:19,920 probably until the last minute. 404 00:25:25,640 --> 00:25:28,960 Not everyone who has Parkinson's will see behaviour changes 405 00:25:28,960 --> 00:25:31,920 like John, Ivan and Les. 406 00:25:35,040 --> 00:25:38,920 And Les, in particular, also suffered from dementia, 407 00:25:38,920 --> 00:25:42,040 but what these women want is an open discussion 408 00:25:42,040 --> 00:25:44,240 of everything that can happen, 409 00:25:44,240 --> 00:25:49,400 to make sure families get support and the disease is spotted early. 410 00:25:49,400 --> 00:25:51,440 The kind of person he was, 411 00:25:51,440 --> 00:25:55,360 I know that he would have felt very embarrassed about it all, 412 00:25:55,360 --> 00:25:59,680 but at the same time, if he thought, by disclosure, 413 00:25:59,680 --> 00:26:05,400 one was going to be able to influence people 414 00:26:05,400 --> 00:26:08,120 who are having early signs, 415 00:26:08,120 --> 00:26:10,960 which are being ignored - or they are ignoring, 416 00:26:10,960 --> 00:26:13,240 as our husbands did... That's true. 417 00:26:13,240 --> 00:26:15,480 They ignored the early signs, 418 00:26:15,480 --> 00:26:18,520 I think if he thought it could do some good, 419 00:26:18,520 --> 00:26:21,760 he would say, "Right, go for it." Yes. 420 00:26:21,760 --> 00:26:24,120 Les's last six weeks, 421 00:26:24,120 --> 00:26:26,240 he started writing. 422 00:26:26,240 --> 00:26:29,280 He did it because he wanted medicine to know 423 00:26:29,280 --> 00:26:33,960 what had happened to him, and he knew they didn't. 424 00:26:33,960 --> 00:26:37,720 The repercussions of your standing up and saying, 425 00:26:37,720 --> 00:26:42,280 "I can smell Parkinson's," have not been in this country alone. 426 00:26:42,280 --> 00:26:45,160 No. It's worldwide. It is worldwide. Yes. 427 00:26:45,160 --> 00:26:49,240 People have joined us and said... So we should be very privileged! 428 00:26:50,640 --> 00:26:54,120 To stand up and say it, I was frightened that day. 429 00:26:54,120 --> 00:26:57,960 Even as a nurse, and with Les backing me... Yes. 430 00:26:57,960 --> 00:27:01,000 ..we knew it was the right thing to do. 431 00:27:01,000 --> 00:27:05,960 But you did it, and look where we are now. Where we are now. 432 00:27:09,240 --> 00:27:13,840 I think Joy really did kick-start an avenue of research 433 00:27:13,840 --> 00:27:17,600 that was, essentially, non-existent at the time. 434 00:27:21,360 --> 00:27:23,320 I'm really excited. 435 00:27:23,320 --> 00:27:27,400 I'm also incredibly humbled because, in the end, 436 00:27:27,400 --> 00:27:32,600 the story comes from Joy, who lived with Les for a very long time 437 00:27:32,600 --> 00:27:34,920 and now he isn't here any more. 438 00:27:37,120 --> 00:27:39,640 I think we're still at the beginning of it, 439 00:27:39,640 --> 00:27:42,640 but, I don't know, it's been an exciting journey, 440 00:27:42,640 --> 00:27:44,920 and I really look forward to see where it's going to lead 441 00:27:44,920 --> 00:27:46,360 to in the future. 442 00:27:48,880 --> 00:27:52,520 Having lived with Les, 443 00:27:52,520 --> 00:27:56,600 we were together 35 years of Parkinson's, 444 00:27:56,600 --> 00:28:00,480 we were married for 42 years when he died, 445 00:28:00,480 --> 00:28:11,000 so I don't want other families to have the same experience. 446 00:28:12,560 --> 00:28:16,880 I want relief for them. 447 00:28:16,880 --> 00:28:22,480 I want to see a better understanding within medicine, 448 00:28:22,480 --> 00:28:28,920 a better education for the general public, 449 00:28:28,920 --> 00:28:33,400 and the hope that, with early diagnosis, 450 00:28:33,400 --> 00:28:37,000 there is going to be treatment.