JENNY BROCKIE: Welcome everybody, good to have you with us tonight. Andrew, tell us about some of the things you do in your sleep?
ANDREW JAMROZIK: I've done a range of things. I have fallen sideways off the bed probably that was one of the first things I did when I started sleepwalking. More recently I've run out of the bedroom into the lounge room, trying to get away from a snake that was obviously in the bed. It happened twice in the one night, just to clarify. Thought there was a snake the first time, got up, ran into the lounge room, realised that it was just a dream, went back to the bed. An hour later did exactly the same thing, ran into the lounge room, hit the balcony door, couldn't get it open, ran to the other side of the apartment, almost bowling Kat over who was then trying to see what was going on. Ran out on to the bright lights of the hallway, which is a communal area, looking up the security camera in my underwear and realised that I'd made a bit of an error.
JENNY BROCKIE: Now you've also thrown yourself head first off the bed onto the floor, is that right?
ANDREW JAMROZIK: Yeah, yeah, that was about two years ago, after I'd just met Kat.
KAT YOUNG: Using me as the catapult, pushed himself off the bed so I wake up to a giant person clambering over me, putting his whole weight on my knee and I actually couldn't walk the next day because my knee was all swollen.
ANDREW JAMROZIK: That one I remember because I was in a swamp in a dream and I was trying to get out of the swamp and I actually woke up heading towards the floor.
JENNY BROCKIE: And you also try to hold up walls in your sleep?
ANDREW JAMROZIK: Yeah, that's quite common. Sometimes I've woken holding on to the wall because I think the apartment is about to fall down, sometimes it's the bedhead as well.
JENNY BROCKIE: So how often do you do these sorts of things?
ANDREW JAMROZIK: When, when it's hot, when the weather's hot so 25 degrees centigrade or higher in the room, I probably do it three times a week or more.
KAT YOUNG: Yeah, I haven't slept in three years. Yeah, I haven't had a great night’s sleep.
ANDREW JAMROZIK: Sleep is one of her challenges.
JENNY BROCKIE: When did it start?
ANDREW JAMROZIK: Probably in my mid-20s.
JENNY BROCKIE: And how aware are you of those things when you're doing them?
ANDREW JAMROZIK: I'm, I'm only aware generally if I wake up or if I do something which wakes me up, like I dive on to the floor or I …
JENNY BROCKIE: Or see a security camera?
ANDREW JAMROZIK: Yeah, exactly, or the bright light comes on, then that generally triggers, triggers me probably to wake up I would say, yeah.
JENNY BROCKIE: Kat, you bear witness to all this, what's the most extreme thing he's done from your point of view?
KAT YOUNG: Probably the most extreme was the one where he tried to get out of the balcony door because we were probably two floors up at that stage and that scared the hell out of me. And I thought he was going to bowl me over so it was sort of - that was quite freaky because he's so tall and you know a lot heavier than me and I wouldn't have stood a chance if he'd knocked me over.
JENNY BROCKIE: It's a very lively time you have at night. Does he seem awake or asleep?
KAT YOUNG: Awake, he argues with me that he's awake and I said no, you're asleep, I can tell. And he's like no, I'm awake. So he is fully awake, he looks awake, he looks at me, he talks to me.
JENNY BROCKIE: And do you remember those conversations?
ANDREW JAMROZIK: No, no, like, a lot of the times I do something that wakes Kat up, I might say something to her, she'll talk back, tell me to go back to sleep and I'll go back to sleep. So a lot of it is just talking. I have no knowledge of any of those events.
JENNY BROCKIE: Joel, you're listening to this?
JOEL PILLAR: Yeah.
JENNY BROCKIE: You're here with your partner Alex who also sleep walks?
JOEL PILLAR: Yeah, she does.
JENNY BROCKIE: Any of that sound familiar?
JOEL PILLAR: Sounds very familiar, particularly lack of sleep, I don't think I've slept well for four years. But Alex is very active at night. She does a range of things, she does a lot of sleepwalking, she does a lot of sleep eating, she sleep hides in cupboards. She does a number of things.
JENNY BROCKIE: What do you mean she sleep hides in cupboards?
JOEL PILLAR: Sometimes I wake up and the bed will be empty next to me I'm like “oh, where's Alex” and the house is all dark. I look around for a bit and then eventually I'll hear some breathing coming from a cupboard and I'll pull aside the clothes or open the door and she's just in there with her head against the wall just - or curled up into a thing in the cupboard and I'm like what are you doing in the cupboard and she's sound asleep.
JENNY BROCKIE: What else does she do?
JOEL PILLAR: She sleep eats a lot, so she'll just wake up in the morning and there will be a bunch of wrappers or a bowl of cereal half eaten or something on the ground and she won't remember anything about it. But probably the thing that worries me is when she sleep walks out of the house and so sometimes I'll wake up just having heard the front door close and I'll jump out of bed and run after her and she'll be down the street, head like really focused, concentration and just powering down the street and I'll run out there, just wearing some boxers or something, both of us in our pyjamas and I'll catch up with her and I'll turn her around and come on, come back home.
JENNY BROCKIE: And Alex, do you know you're doing it when you're doing it?
ALEX ROGERS: No, I don't know that I've done it but quite often if something triggers my memory, I have like a vague recollection, especially with the sleep eating.
JENNY BROCKIE: And do you know why you get into cupboards?
ALEX ROGERS: I think it's cosy.
JENNY BROCKIE: Do you often get into cupboards?
ALEX ROGERS: Um, I think I often do in strange places. We went away to New York and I was in the cupboard.
JENNY BROCKIE: Any old cupboard?
ALEX ROGERS: I think I might get a bit lost sometimes as well and end up in the cupboard, I've think that might have happened in New York because it wasn't an interesting cupboard.
JOEL PILLAR: It usually happens when she's missing her family a lot who live in Adelaide, she'll do it three or four times a week and so I will go after her, I'll just turn her around and go where are you going?
JENNY BROCKIE: She's walking to Adelaide?
JOEL PILLAR: So she'd be on the sidewalk, 100 metres from the house, and power walking.
JENNY BROCKIE: From Sydney?
JOEL PILLAR: From Sydney. I don't know if it's clearly thought out at that point.
JENNY BROCKIE: And again, are you aware of that?
ALEX ROGERS: I'm aware that I want to go home, I'm aware that I probably wouldn't be able to walk there, but I'm not really aware that I'm doing it at the time, no.
JOEL PILLAR: Yeah, there's a clear moment when she wakes up often and for that few seconds she's very confused about where she is and you can see it change in her face when she's just like where am I, what's just happening?
JENNY BROCKIE: Kat, you're nodding? Same thing?
KAT YOUNG: Yeah, exactly the same thing. It's like a switch he's sort of turned on and you can tell from the moment that he's gone from being asleep to actually being awake and particularly when we argue about whether he's actually awake or not.
JOEL PILLAR: We have that same experience of discussing whether she's awake or not. And in my experience, her, she doesn't have really ability to process complicated things when she's sleep talking to me and so my trick has always actually been to ask her are you awake and that tends to confuse her and so if she's awake she'll just say yeah, I'm awake. If she's asleep she'll be like, she'll look around and she'll screw up her face and she's not sure how to deal with that question.
JENNY BROCKIE: Okay, do you test her though when she's in this state?
JOEL PILLAR: Yeah. One time I thought well this will be interesting, I'm going to teach her something when she's asleep, which was the word touché, which is a French word for touch that they use in fencing, and see if she remembered it when she woke up. I woke her up, had no idea what the word meant. When she next fell asleep I asked her about it and she said yes, I know what that is, it's the French word for touch and it's from fencing.
JENNY BROCKIE: Interesting?
JOEL PILLAR: That totally blew my mind, I'm like I don't know how, I don't know how to make sense, I have to go and ask Dr Karl from JJJ or something. I never got round to it.
JENNY BROCKIE: We've got a few people who may be able to help with this, yeah.
JOEL PILLAR: That's right.
JENNY BROCKIE: Interesting. Kat, you might be getting ideas at this point.
KAT YOUNG: Yeah, I've got a whole list of ideas now.
JENNY BROCKIE: Do you worry about safety with any of this, yeah?
ANDREW JAMROZIK: I worry for the fact that when I eventually have kids I might embarrass myself or I might - I think my biggest concern is that given the physical nature of my sleepwalking, I may do something which in some ways, obviously not harmful but I might do something given that my size and you know, babies are small, that's my concern, that you know, maybe I need to be in a cage and that, and that I think, I think that, yeah, maybe just, I need to be just a bit of a distance way because I don't know what I do at night really.
JENNY BROCKIE: And you're having a child?
KAT YOUNG: I am, yes, yes, so it does weigh on my mind a little bit sometimes, yeah, being pregnant. I'm like not showing too much yet but I sometimes worry about when I'm the size of a whale that I'm not going to be able to be as agile and grab him or run after him and make sure that he's awake.
ALEX ROGERS: I worry about other people's safety sometimes. Like I don't know, what if I decide to drive the car in my sleep?
JOEL PILLAR: Oh, I've caught her in the car, in the car starting up the car and stuff when she's fast asleep. That was actually very scary, I just recalled that just that, when I realised that this was happening quite a lot, I started to put the chain on the door, because that is a little bit harder for her to figure out in her sleep.
JENNY BROCKIE: So Alex, do you think you're conscious or not when you're doing these things?
ALEX ROGERS: Um, I don't know. I think it depends how you define consciousness because I can recollect what I'm doing but I don't know if I'm moving my body voluntarily. I don't really know the answer to that question.
JENNY BROCKIE: Alright, Tristan Bekinschtein, you study the transitions between states of consciousness and you've recently been looking at sleep. What's going on here when these people are sleepwalking?
PROFESSOR TRISTAN BEKINSCHTEIN, UNIVERSITY OF CAMBRIDGE: It's very interesting. We actually don't know a lot about sleepwalking, it's very difficult to catch what kind of sleep stage or what type of sleep are they in when they are sleepwalking. There's a couple of studies and they are pointing out that they are truly asleep, they're not just awake with a disconnection, but they are with some sleep markers. So it feels like the disassociation between their cognition, the capacity to be connected to what they're doing.
JENNY BROCKIE: So are they conscious or not when they're sleepwalking?
PROFESSOR TRISTAN BEKINSCHTEIN: I think, I think they're conscious in a very, in a particular way. I think they're conscious in a similar way that you are conscious when you are sleeping.
JENNY BROCKIE: What do you mean by that?
PROFESSOR TRISTAN BEKINSCHTEIN: When someone's dreaming they have a full conscious experience in their dreams, they're just not aware in the sense that they are aware when they're awake. You are acting and disassociation of your capacity to remain aware of what you're doing. It's what they call recognition disassociation of the agency. It's like when you're doing something in a completely mindless, you're just doing something very automatic and you suddenly are awake, you're not monitoring any more.
JENNY BROCKIE: Okay, so almost like habitual behaviour, almost like doing things on automatic pilot?
PROFESSOR TRISTAN BEKINSCHTEIN: So it's not necessarily automatically, they feel they can do, it feels they can form memories as in the case of the touché word. So in this sense there is some flexibility in their behaviours, it's not automatic only but seems to be dependent on the context. They can only, you know, remember that word or that learning in that context. In this case seems to be the other way as if these people could have another type of consciousness that we don't have, or we haven't, you know, developed - Gifted people.
JENNY BROCKIE: Gifted people, that's another way of looking at it. How do you define consciousness then?
PROFESSOR TRISTAN BEKINSCHTEIN: Consciousness, when you become aware of something, either your surroundings or yourself or your mental thoughts, so these three levels is, one of these places is sleepwalking phase. I don't think they're aware of themself being in the dream or in the sleepwalking. I think that third level, the metacognition level I think is lacking but they can tell me what they think.
JENNY BROCKIE: What do you think when he describes it that way?
KAT YOUNG: I agree, I think that he's definitely not aware until he's awake.
JOEL PILLAR: It's not black and white like asleep or awake. You go through phases and when she's half way between those two she will remember more often remember that, but there's things that she won't remember at all, yeah, definitely.
ANDREW JAMROZIK: And in some cases I've actually discussed with Kat the things that are on my mind, even if I don't remember in the morning that's my discussion.
KAT YOUNG: Yes, I get difference answers as well because I find that he sometimes does talk to me about things that are on his mind and then the next day I'll be like do you remember what we talked about and he's like oh, vaguely, and he will either close off or not really give me much or whatever. So it does get very frustrating because you get like two different people sometimes.
JENNY BROCKIE: Natalia, you're a research psychologist and you have what are called lucid dreams. Describe what lucid dreams are for us and describe yours?
NATALIA ZMICEREVSKA: Well for me lucid dream is basically when I'm totally aware of myself and that I'm actually dreaming within the dream while the dream is happening, and it's been happening to me since I was about twelve or thirteen. I was reading a book by Carlos Castanada, Carlos Castanada is anthropologist who described his training in Shamanism and he described the technique which supposedly allowed you to become conscious in your dreams. So I started trying it for about two or three weeks and the technique was to find your hands in the dream. So every night before going to sleep I was concentrating and setting my intention and focusing okay, I'm going to find my hands in my dream and after about two or three weeks of practicing, it happened and I actually realised oh, my God, I am, I am somewhere, I'm within my dream, my body is asleep in my bed, but where, where am I? What's this space?
JENNY BROCKIE: Why? Why did you want to do it?
NATALIA ZMICEREVSKA: Because I was fascinated of what is it, what is our mind, what is our consciousness? There is so much more that we don't know about ourselves, what can it teach me about a nature of our mind?
JENNY BROCKIE: So do you manipulate your dreams when you become conscious in them?
NATALIA ZMICEREVSKA: Yes. I can control my dreams, I can do whatever I set out to do and usually I try to do things that I obviously can't do in real life, so things like flying, things like going through the walls.
JENNY BROCKIE: So you think you're conscious in your dreams?
NATALIA ZMICEREVSKA: I am full I conscious, I have a memory, I know who I am, I know that my body is in bed, that I'm asleep at the time and…
JENNY BROCKIE: How do you know you're asleep?
NATALIA ZMICEREVSKA: I just know because I remember going to sleep, I remember going to bed, I know, I have full memory of what happened just immediately before the dream happened.
JENNY BROCKIE: Tristan, I'm sure a lot of people listening to this story would be scratching their head and wondering about it. What is a lucid dream? Is it an identified thing?
PROFESSOR TRISTAN BEKINSCHTEIN: Lucid dreaming is, lucid dreaming is a very interesting, you know, technique you can develop. And interestingly in a time in the '80's it used to be quite common for kids who have night terrors to try to train them to fight their demons, fight the thing that was scaring them in their sleep. So some psychiatrists will give the kid, you know, something like a wooden sword and if they will have the night terrors they will fight back the nightmare in the dreams. So it's something that can be, can be trained, it's not for everyone, it's not so easy and it can happen when you're a kid but it's very difficult to do when you're an adult.
JENNY BROCKIE: Okay, when Natalia lucid dreams, when anyone lucid dreams, are they conscious or not?
PROFESSOR TRISTAN BEKINSCHTEIN: Yeah, I mean effectively very few people are aware that they are in a different state so definitely it's gaining awareness, a particular kind of awareness of being in a different context, it has nothing to do with wakefulness because you're not acting, your sleeping patterns are completely preventing you from acting your dream. The question is if the people are sleepwalking, are they acting their dreams and we think that's not the case.
JENNY BROCKIE: Okay, alright - Nao, you study consciousness, do you think Alex and Andrew are conscious or not when they're sleep waking?
ASSOCIATE PROFESSOR NAO TSUCHIYA, MONASH UNIVERSITY: I think probably they are conscious but there are several important things to note. Consciousness and memory tend to go together, when you're conscious, when you're awake you remember well. When you are not conscious you don't remember. But also disassociation happens. You can do many complicated things but completely unaware, or many complicated things and you are aware but don't remember. You can't distinguish from outside.
JENNY BROCKIE: But can you then measure which one of those two options it is by monitoring the brain or by doing a scan of the brain or whatever you do?
ASSOCIATE PROFESSOR NAO TSUCHIYA: In principal, yes, it should be but there are always ethical reasons to - not to do it. For example, in animals, we can always implant electrodes.
JENNY BROCKIE: That's something to look forward to?
ASSOCIATE PROFESSOR NAO TSUCHIYA: But this kind of thing actually happens in the hospital, for example, to monitor epilepsy. So if it happens that this epileptic, you know, people do sleep walk, you know, then it could be investigated in that way.
JENNY BROCKIE: So you think it is possible to establish the question of consciousness with sleepwalking?
ASSOCIATE PROFESSOR NAO TSUCHIYA: Yes, I think so, in principle.
JENNY BROCKIE: So what so some of other our experts here think? What do you think Andrew?
ASSOCIATE PROFESSOR ANDREW DAVIDSON, ROYAL CHILDREN’S HOSPITAL: I think it's a fascinating discussion. Whether you can actually measure that - sceptical. We don't really know where consciousness is in the brain and the tools that we have to try and measure if somebody's consciousness are very, very crude.
JENNY BROCKIE: Mary- Louise, you were put into an induced coma last year after a cardiac arrest.
MARY LOUISE CLIFFORD: Yes.
JENNY BROCKIE: Do you remember anything from the time you were in that coma?
MARY LOUISE CLIFFORD: I remember being in the back of the ambulance and the conversation that the ambulance drivers speaking to the hospital. Then there's nothing for a while and then I thought I was at a party trying to video people coming in and out of the party from underneath a canopy of a boat.
JENNY BROCKIE: Was this technically while you were in the coma?
MARY LOUISE CLIFFORD: Yes, this was while I was in the coma.
JENNY BROCKIE: And you were imagining all this? You describe it as being like a parallel universe?
MARY LOUISE CLIFFORD: Yes, it definitely was because it seemed very, very, very real to me, as if it's like being in this space now.
JENNY BROCKIE: What were the doctors telling your family while you were in this parallel universe?
MARY LOUISE CLIFFORD: That there was very, very little chance of survival. Those conversations are still very clear in my mind and smells were very conscious, people who were in the room, their smell, their touch, their voices.
JENNY BROCKIE: And during this time you weren't responding to anything to stimulus from…
MARY LOUISE CLIFFORD: Not for the first ten days until I started to come out of the coma and I then was squeezing hands and having some eye movement, but up until that point there was nothing to indicate that I was ever coming back. So I really didn't know I was in a coma. I thought I was at a party.
JENNY BROCKIE: Trish, you're Mary- Louise mum, you were there every day, you are also a registered nurse. Was she showing any signs of consciousness?
TRISH CLIFFORD: The doctors weren't sure but I felt that there probably was but I don't know. Finally when they couldn't wake her up they decided to do a brain scan thinking there wasn't going to be much hope, if she survived physically certainly she would have a lot of brain damage, and I just said to the intensivist, I breed them tough, she's the eldest of my five children, and she went away and he came back he said: "Well tough mum, come over here there's three little spots, she's going to be okay."
JENNY BROCKIE: She's going to be okay? What happened when you woke up, do you remember?
MARY LOUISE CLIFFORD: It was very disorientating because I was ventilated and I couldn't move because I was just in such a bad way. But I was very conscious of hands and people touching and squeezing and very conscious that I was upset, that I was upsetting other people.
JENNY BROCKIE: And you remembered a paramedic's voice too?
MARY LOUISE CLIFFORD: Yes. For my birthday I went to see the paramedics because they gave me an extra birthday that nobody thought I was going to have and I met the ambos to give them a gift and this person spoke and I went oh, my goodness, you're the voice in my head. I hear you talking on the radio doing a very clinical handover - 41 year old female, resuscitation on site, and that was just a mind blowing moment.
JENNY BROCKIE: So do you think, I mean this is obviously a huge experience for anybody to go through, do you think that you were conscious when you were in that parallel universe that you described? How do you think of it?
MARY LOUISE CLIFFORD: I think I was in a different type of consciousness. I don't think that I was able to talk to people or express any needs or wants. But I obviously was aware of what was going on around me and my brain was going hey, what's going on? And it just tried to make sense.
JENNY BROCKIE: It was trying to process?
MARY LOUISE CLIFFORD: Trying to process, trying to work out why I was here and what was going on.
JENNY BROCKIE: Trish, what was she like when she woke up?
TRISH CLIFFORD: Oh, she was bizarre, the conversations were just really bizarre - the boats and the big four wheel drive with the giant wheels running over people. Her first real response was her boss has a very gentle, deep voice and her first response was to him, but then it got worse. She was really cranky with me and very emotional. We're all a very emotional lot anyway but I mean she just astounded everybody and look where she is now. 19 minutes with no oxygen.
JENNY BROCKIE: Are you okay? It's hard going back over it, yeah?
TRISH CLIFFORD: Yeah.
JENNY BROCKIE: Dominic, you're a neurologist and you deal with cases like this. How do you work out whether a person is conscious or not when they're in a coma?
PROFESSOR DOMINIC THYAGARAJAN, MONASH HEALTH: Yeah, consciousness is a thorny problem, but as neurologists we're fairly simple minded folk, we think of consciousness operationally and we try to establish the presence of two broad brain mechanisms. One is that of arousal which, translated into English, is wakefulness really, the presence or absence of wakefulness. And then awareness, so awareness of oneself, the inner states we were talking about earlier or awareness of the environment. And when those things are present then we consider a person to be conscious. But these states exist on a continuum.
JENNY BROCKIE: So how good are you at identifying where someone is in terms of those states?
PROFESSOR DOMINIC THYAGARAJAN: We can ascertain certain things. For example we can tell whether a person is there a state like anaesthesia which is coma, where there is no sleep wake cycle. Some people, such as Mary- Louise, move into a phase where they have the reestablishment of a sleep wake cycle so they might open their eyes and they might develop certain EEG, that's electro encephalography signatures of sleep and wake. So we can establish that. But they may have no awareness either of the environment or themselves, so this is something called a vegetative state. And some people may stay in such a state but other people emerge from that into something that's a little bit in between that, again on this continuum, and full wakefulness which is something like a state where there is limited awareness of the environment and of the self.
JENNY BROCKIE: And can you be certain about something like a vegetative state?
PROFESSOR DOMINIC THYAGARAJAN: No, I don't think we can. Until we can directly ascertain the content of a person's mind we will always make an inference and that's hard enough in, to ascertain the contents of a person's mind when you're dealing with a person who is fully conscious and wakeful.
JENNY BROCKIE: So what do you think consciousness is?
PROFESSOR DOMINIC THYAGARAJAN: Well, I don't want to define it. I, I, I'd like to go back to my trade which is trying to establish whether a person has arousal and whether they're aware and some of this can't be determined in a single sitting. One has to repeatedly study a person with a clinical examination to determine how consistently their behaviour might indicate that they're aware of themselves or not. Because people like Mary- Louise coming out of such states, there are many automatic movements that do occur that appear to be volitional but they aren't and sometimes this confuses relatives.
JENNY BROCKIE: So they appear to be, you know, intentional? They appear to be something somebody is doing intentionally when in fact they're not, they're like an automatic reflex?
PROFESSOR DOMINIC THYAGARAJAN: Some of these are reflexive movements.
JENNY BROCKIE: Kate Allatt in Sheffield, you had a stroke in 2010 and you woke up in hospital three days later. What condition were you in when you woke up?
KATE ALLATT: I was in a coma, as you said, for three days and I knew nothing in that coma, absolutely nothing. When I woke up I was very conscious. I knew exactly where I was with the machine, I was on life support breathing for me. I knew who came to see me, although the first few days I was assessed as being in a persistent vegetative state. When I woke up from my coma I was in a locked in state, completely locked in, my friends who visited me noted that my response to seeing someone who loved me coming to visit me was to cry tears. But there was no noise, they were just, they were just tears rolling down my face.
JENNY BROCKIE: Sorry, when you say you were in a locked in state, you couldn't move anything, could you? You couldn't say anything, you couldn't touch anything?
KATE ALLATT: I'll tell you what I could do. All I could do was see and hear and I could feel anybody touching me. So the messages came one way but not the other way.
JENNY BROCKIE: Could you hear what the medical staff were saying about you?
KATE ALLATT: Absolutely. I heard conversations about me, I mean people talking about me as if I wasn't there, talking over me. I heard conversations about patients next to me in ICU. I was there for nine weeks, you know, unfortunately having their feed withdrawn because they couldn't do any more for them and then they obviously went on to die which was very, very distressing. So yeah, I heard a lot of stuff I wish I didn't.
JENNY BROCKIE: Did anyone else know that you were understanding what was going on?
KATE ALLATT: My friends actually made their own letter board and they came in and said to me: We know you're in there Kate and we're going to try and figure out a way to let you communicate with us. The first word I spelt out took about half an hour and I'm not joking and I started with, I started with A, blink once all the way to S, went blink once - I blinked twice at that point and then back to A, blinked once all the way to L, blinked twice, and then back to A and blinked once all the way to E, and my friend fortunately put me out of my misery and she said "sleep" Jackie, I can't sleep at night and I blinked twice - at that moment it was like a kava bottle erupting, It was the most monumental moment knowing that I was for the first time being understood in two weeks.
JENNY BROCKIE: So for two weeks you couldn't communicate that to anybody?
KATE ALLATT: No.
JENNY BROCKIE: What was that like?
KATE ALLATT: Um, it was utterly horrendous, it was, it was - it was like being buried alive, I was so bored, fearful, upset, angry, in denial, scared, hot, I couldn't regulate my temperature, in constant fear that actually the conversations with my loved ones were that I wasn't worth being saved.
JENNY BROCKIE: Were you being tested in that two weeks when you were locked in? Were you being tested for consciousness, for awareness?
KATE ALLATT: No, no, not in that two weeks and I go back to what your neurologist said, it's down to the frequency of the assessing of the patient. So you might be in a persistent vegetative state immediately after coming out of a coma but within days you might be emerging and I wasn't tested sufficiently quickly enough.
JENNY BROCKIE: Were you given brain scans and things like that to test brain activity?
KATE ALLATT: No, no, not to test, not an EEG. I only had MRI scan, scans actually.
JENNY BROCKIE: And did that, did those not show anything?
KATE ALLATT: That didn't detect activity, that didn't detect activity. That just detected a huge multiple brain stem stroke caused by an infarction and occlusion, you know, on my brain stem.
JENNY BROCKIE: Dominic, your response to this story, how can you be sure with those people that you get it right?
PROFESSOR DOMINIC THYAGARAJAN: Well, Kate's harrowing story is that a of a person who is locked in and a person in this state is fully conscious and aware. Consciousness and awareness arises from the hemispheres of the brain.
JENNY BROCKIE: Does that happen often?
PROFESSOR DOMINIC THYAGARAJAN: Well yes, frequently, it does. It's not terribly difficult for a neurologist with access to some investigations, not even as sophisticated as the ones that Kate had, MRI for example, to come to the conclusion that the person might be in a locked in state.
JENNY BROCKIE: Okay, you're…
KATE ALLATT: Can I just ask, can I just say something sorry?
JENNY BROCKIE: Sure.
KATE ALLATT: I do agree with the neurologist but I'm just making the point that the speed at which I improved was faster than my assessments. Now you might think two weeks isn't very long to be like that, but for someone not to be able to communicate or be given an opportunity to try and establish a communication system, those two weeks is a hell of a long time when you've just got a clock on the wall.
JENNY BROCKIE: Lauren, you're husband Michael had an aneurism and a series of strokes in late 2012. Can you tell us what happened to Michael?
LAUREN BELLERT: Okay. So were about to go overseas the following day so I was packing our bags and he had actually been at a Christmas party for work the night before so he was feeling a bit sorry for himself and at this stage, just to feel you all in, I was actually three months pregnant with our twins. So I was going through the suitcase and saying do you want to take this and then all of a sudden he says why are you packing? And I'm like what do you mean, why am I packing? And I said we're going to Hawaii because I'm pregnant and he's like you're pregnant? And then his face has just dropped and he had no memory that I was three months pregnant. And that's when the alarm bells went off for me. I rang my mum and I said I don't know what to do, what's going on, and I took him down to Accident and Emergency.
JENNY BROCKIE: And he went into a coma?
LAUREN BELLERT: It's a bit, he went, from being aware but sort of like childlike, scared, to babbling incoherently, not knowing where he was. It took some time to get him in for a scan but when they eventually got him in for a scan they saw the bleed and they put him in an induced coma. So I'm not sure if he went into a coma or they just induced him once they saw the bleed.
JENNY BROCKIE: And you have Parkinson's?
LAUREN BELLERT: Yes.
JENNY BROCKIE: And Dominic is your doctor?
LAUREN BELLERT: Yes, yes, it is a small world.
JENNY BROCKIE: It is a very small world.
LAUREN BELLERT: Yes, so that's why I'm twitching as well, a little bit nervous.
JENNY BROCKIE: You're doing really well?
LAUREN BELLERT: Thank you.
JENNY BROCKIE: When did Michael come out of the coma?
LAUREN BELLERT: So they took the sedation off, they started to take it off New Year’s Eve, so New Year's Eve 2012.
JENNY BROCKIE: And was he responding much at that point?
LAUREN BELLERT: No, they couldn't get anything out of him and it was all very pessimistic at that stage.
JENNY BROCKIE: So what were the medical staff telling you to expect?
LAUREN BELLERT: You know, he's not responding, he should be like opening his eyes, he should be tracking. Once he starts doing that that means that, you know, things are different, but at this stage it's not looking good and, yeah, it wasn't very nice to hear.
JENNY BROCKIE: Let's have a look at your family now.
LAUREN BELLERT: Okay.
BELLERT FAMILY VIDEO PLAYED:
LAUREN BELLERT: I like to tell him funny anecdotes about what the girls have done because and they so funny and so cute. They've got so much personality and they're so smart, I mean I know everyone probably thinks that about their kids but like their personality is so similar to his and I think that that brings him a lot of joy to hear, that he's such a big part of them. I think seeing them every day just gives him the motivation to keep trying and to keep working at it himself because if he didn't have a reason then, you know, he probably wouldn't work as hard. I do a lot of the talking obviously. I ask him questions and he responds, if he's not able to respond through blinking I'll try other ways.
LAUREN BELLERT: I suppose because we've been together and known each other for twelve years they've just got that sort of bond.
LAUREN BELLERT: They always said don't give up hope. Yes, it takes time, but you know, I want to be able to be one of those people they talk about and they can say, you know, he got through it and yes, it took him a while but, you know, he's now got this family and he's at home and you know.
LAUREN BELLERT: Sorry about being so loud.
JENNY BROCKIE: You've got me going as well.
LAUREN BELLERT: I haven't seen them today so it's really hard for me to watch that.
JENNY BROCKIE: Yeah. He's in a nursing home now?
LAUREN BELLERT: Yeah.
JENNY BROCKIE: How's he going?
LAUREN BELLERT: Look, he's doing so well. Like for the situation that he's in, he's doing so well. He's come so far, he's been from, you know, minimally conscious, not responding, opening his eyes to like tracking and now he follows commands. I know that he understands everything because we can communicate through blinks and closing eyes and he laughs at my jokes.
JENNY BROCKIE: When did you first think he understood what was going on?
LAUREN BELLERT: I suppose, as I said it is a blur, there's some key moments that I do remember. One of the ones was I was working on his concentration and I had a comedy skit up and we were watching it and the guy, pretending to be a horse. Now to understand this, I find animal humour very funny, like you know, send me a picture of a dog dressed up in a little costume and I'd be laughing and Michael knows me that well and like we were watching it together and I laughed and then he laughed and I'd never heard him laugh since it all happened. I hadn't heard him laugh, hadn't seen him smile, and just the fact that he was laughing so much that I thought it was funny, I knew that that's what his reaction was about.
JENNY BROCKIE: So how much do you think he comprehends now?
LAUREN BELLERT: Oh, he's fully aware. I think the problem with Michael is not that he's aware or he's conscious, it's just he can't put the signals out, I suppose, is the correct terminology. It's hard for me to know what is going on inside him because he's not verbal and a lot of the input or the information that I get from him is me asking the question. So I have to ask the right question to know the right, the answer and I don't know all the questions.
JENNY BROCKIE: But you can't think of everything?
LAUREN BELLERT: I know, but that's me though.
JENNY BROCKIE: Yeah. Elaine, I wonder how you felt watching that, that piece, as a nurse and how much do you go on instinct?
ELAINE MCGLOIN: When we're caring for them and that's what we do, like we care for them, you might be there for a twelve hour shift, an eight hour shift or a ten hour or a twelve hour shift so you're around them quite a lot. We do the formal assessments but you watch them with their families, watch their families with them. With the patients who have been with us a while we sometimes see the opposite way. That we know that there's something maybe not quite right with them, that their Glasgow coma scale is the same, but you've got this, you think that maybe there isn't something quite right and then an hour other two later you notice that their temperature goes up and then their Glasgow coma scale goes down.
JENNY BROCKIE: Goes down? What about making sure it's not just a reflex action that people are having? I mean how do you make, how do you determine that, what somebody is doing when they blink, is it reflex just to blink rather than a response?
ELAINE MCGLOIN: So when we're assessing the awareness, I will sometimes put my fingers in their hand and say now wriggle your toes and if just squeeze my fingers then for me that's more of a reflex, they're not doing what I asked them to do. With the eye blinking, we usually try and get people to do things three times to see if they can replicate it and so we usually sort of ask them to blink twice for yes and maybe three times for no, just so that we're not misinterpreting a one off blink.
JENNY BROCKIE: And what about the way you talk in front of patients.
ELAINE MCGLOIN: We always teach new staff coming in to care for the patients that just assume that the patient can hear you. So always speak to them like they can hear you, even the patients who are completely comatose, we ask the nurses to speak to them as if they can hear.
JENNY BROCKIE: Let's talk about anaesthesia, when we try to make people unconscious, which I think is interesting too. Now Rosie, you're two and a half year old Aston had his tonsils and adenoids out a few months ago, describe what he was like coming out of the anaesthetic?
ROSIE HARRISON: It was pretty harrowing to watch. He just came out and was thrashing about and screaming and carrying on.
JENNY BROCKIE: You described him as being like the devil?
ROSIE HARRISON: He was, I'm not even religious but I was saying to the nurses oh, this is isn't my son, this is devil spawn because my son is just so far from that. He's happy go lucky, he smiles, laughs.
JENNY BROCKIE: So this was really extreme, you were seeing like a completely different person?
ROSIE HARRISON: Oh, yeah, yeah. Like I was holding him down and another nurse was holding him down.
JENNY BROCKIE: How long did it last?
ROSIE HARRISON: All the nurses are apologising and stuff. I think about twenty minutes, I'm not 100 percent sure, like from…
JENNY BROCKIE: Did he recognise you as he was coming out?
ROSIE HARRISON: No, not at all. He was looking at me but through me. Yeah, it was a really vacant sort of gaze and he was screaming out mummy, and he wanted his mum and I'm going it is mum. There was someone else in there, it wasn't my son.
JENNY BROCKIE: Andrew, you're an anaesthetist who works with children, what's going on here?
ASSOCIATE PROFESSOR ANDREW DAVIDSON: It's a typical cares of what we call emergence delirium which happens in 5, 10 percent of preschool children typically and they come out of the anaesthetic and they go berserk, and what you've described is exactly the hallmark of it.
JENNY BROCKIE: Do you know why it happens?
ASSOCIATE PROFESSOR ANDREW DAVIDSON: We wish we knew why it happens, if you actually look at the EEG when they're in a delirium it's like part of the brain is awake and part of the brain is still anaesthetised and interestingly talking about the sleep waking before is that the emergence delirium looks exactly like a night terror and a night terror is when a child wakes up of about the same age and they scream and they're inconsolable, it's lasts about twenty minutes, they just look through the parents and then they fall back to sleep.
JENNY BROCKIE: So are they conscious or not, these children?
ASSOCIATE PROFESSOR ANDREW DAVIDSON: I would say that they're not conscious because they can't actually integrate what's going on.
JENNY BROCKIE: And children require more anaesthetic than adults sometimes?
ASSOCIATE PROFESSOR ANDREW DAVIDSON: Yes, yes.
JENNY BROCKIE: Why?
ASSOCIATE PROFESSOR ANDREW DAVIDSON: We don't know.
JENNY BROCKIE: You don't know?
ASSOCIATE PROFESSOR ANDREW DAVIDSON: They just do.
JENNY BROCKIE: They just do.
ASSOCIATE PROFESSOR ANDREW DAVIDSON: Not a lot more, only about 30 percent more.
JENNY BROCKIE: Fascinating, and you've got no idea why?
ASSOCIATE PROFESSOR ANDREW DAVIDSON: Absolutely no idea why.
JENNY BROCKIE: I love this, having a whole bunch of scientists doctors in here saying we don't know, we just don't know.
ASSOCIATE PROFESSOR ANDREW DAVIDSON: But at least we do know that they need more anaesthetic.
JENNY BROCKIE: Alright, David, you've done a study with Andrew on emergence delirium in kids, what do you think? Was Aston conscious or not conscious when he acted like the devil?
PROFESSOR DAVID LILEY, SWINBURNE UNIVERSITY OF TECHNOLOGY: I think part of the difficulties that we have talking about consciousness and brain activity and what actually corresponds to a conscious state and how to detect whether someone's conscious is very much tied up with the fact we still don't know how anaesthetics actually work. So you know, they're the oldest medical intervention that we really have, you know 150 years old, still 150 years later we're still kind of in the dark about actually how they work. They work very effectively, they're very safe, on the whole. But in terms of our actual knowledge of what's actually going on with anaesthesia, we're still really, you know, I would say to use a rather ridiculous analogy pre Copernican in our understandings of firstly how anaesthetics work but also how they actually relate to measurable function.
But with respect to the emergence delirium one, what we found when we actually look at the EEG was that basically in a sense their activity in their frontal lobes appeared to be enhanced, suggesting that the anaesthetics induced a hyper arouseable or a hyper excitable state and so the kids are more likely to be pushed into a state…
JENNY BROCKIE: Into extreme behaviour?
PROFESSOR DAVID LILEY: Extreme behaviour, that's right, yes.
JENNY BROCKIE: But I guess - that's why we're here, can you determine whether they're conscious when they're doing that or not?
PROFESSOR DAVID LILEY: Well I would…
JENNY BROCKIE: Whatever that means?
PROFESSOR DAVID LILEY: Well, whatever that means. Well, I would say, probably by no acceptable definition would they be conscious.
JENNY BROCKIE: Nao, do you think we'll ultimately be able to accurately measure what consciousness is?
ASSOCIATE PROFESSOR NAO TSUCHIYA: I would say in principle, yes. And also to be kind of provocative, to be provocative I'd say actually we have quite a good understanding of what the consciousness in fact, sort of in a different opinion from others. But what is pretty clear from the description of the persons who had this locked in syndrome is the consciousness completely independent of the input to the brain and also output from the brain. What's inside the brain is generating it, that's why she couldn't move any of the muscles but she was completely aware of everything, right?
So any kind of assessment or any kind of measurement that relies on input side or outside side, motor behaviour, is going to fail, I'm pretty sure it's not going to work, and one particularly interesting and promising approach has been published last year in scientific journal that claims that they can actually distinguish between locked in syndrome from vegetative state and also minimally conscious states from vegetative state, and also different depths of anaesthetic can also be distinguished.
So the idea is relatively simple. Instead of just measuring or observing the EEG pattern, what they did was protruding the system by stimulating or using a magnetic pulse or electrical pulse to the brain and they measured how it reverberated in the brain and if the reverberation or response of the brain itself is in a sense very complicated, then that correlates with the level of consciousness. And it seems to work really well so far.
JENNY BROCKIE: Okay, so you're more definitive than the others?
ASSOCIATE PROFESSOR NAO TSUCHIYA: I'm more optimistic.
JENNY BROCKIE: You're more optimistic. You think we're going to be able to work this out? Andrew, what do you think, can you imagine a time when we'll be able to accurately measure these things?
ASSOCIATE PROFESSOR ANDREW DAVIDSON: I'm a little bit more pessimistic. I think we can tell when people are unconscious most of the time but I still think that we don't really understand what consciousness is.
JENNY BROCKIE: David, what do you think?
PROFESSOR DAVID LILEY: I think it's unlikely because you're trying to measure a qualitative phenomenon. I mean the thing about consciousness that's unique is not only the fact that we can process information but there's the content of our thought which is different for everybody. So I think you can't reduce a complex system down to one single number or variable like that. It's like trying to produce a big city like Sydney down to just one number - I mean it just doesn't make any sense.
JENNY BROCKIE: Tristan, what do you think? Do you think there will come a time when we can be more certain about the line between being conscious and not?
PROFESSOR TRISTAN BEKINSCHTEIN: For sure, yes, that's why we're doing research what for. I mean in this discussion, definitely with now and we all the time pushing the limit and pushing the boundary of how much we know about the limits of consciousness. So I don't see why we won't reach a point where we have a readily interesting understanding and agreement, the same way it happened with memory and happened with attention, happened with language.
JENNY BROCKIE: What do you think Dominic?
PROFESSOR DOMINIC THYAGARAJAN: I don't know. I really don't know, I think it is, it is, if I - I don't think it is actually solved.
JENNY BROCKIE: Yeah, I think we could probably all agree on that, don't you think? Not actually solved. This has been fascinating and my apologies to the philosophers at home. You know, I'm sure we'll have you on a whole other time to talk about some of this territory. Thank you so much for joining us tonight. Thank you so much for your stories, really wonderful of you to share those stories with us and Kate had to leave us from Sheffield but my thanks to her. So thank you very much for that and that is all we have time for here, but do keep talking on Twitter and Facebook. Thanks everybody. Thank you.