The Mind Reader: Unlocking My Voice Panorama


The Mind Reader: Unlocking My Voice

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Happy birthday to you, happy birthday to you, happy birthday

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dear Alex, happy birthday to you! Alex, blow! We are both 19 now so

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we are both grandads! Not the ideal place to envisage him spending his

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90th but you have to make the best of things. You are doing so well

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and looking even more well. As soon as you are home, you can get back

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to the good old days. Stay strong, mate. All my love. He had been out

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with his friends for one of his best friend's 18th birthday party.

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There was a big group coming back on the bus. Pianist is bus stop.

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Alex are being Alex and being extremely impulsive decided he was

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not going to wait, he opened the emergency doors and walked off. It

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was going at 25 miles an hour, he missed his footing, landed on a

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parked car and bounced off and landed on his head. He might make a

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complete recovery, he might make no recovery whatsoever. That is the

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one thing doctors have been consistent about right the way

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through, they cannot tell us anything. Some people with really

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bad brain damage can make incredible recoveries and some

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people with a tiny knock on the head can die.

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This is a film about patients who have no voice. About parents who

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want to communicate with their loved ones. Michael, Michael, it is

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mum and dad. And the people trying to help them. Young men who have

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suffered traumatic brain injuries and emerged from a coma into a

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twilight world, awake but not necessarily a where. I am going to

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ask you a question about you and the way you are feeling. But now

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the hope is to reach inside the closed world of their minds and

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make contact. Imagine. Is this the most significant question you have

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ever asked a patient? By a long shot, yes! If scientists can

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release their thoughts, it can release them from a silent world,

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unlocking feeling and memories and giving them back a voice. That was

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really exciting. You answered the questions right, fabulous. That is

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In all the years I have been reporting from the BBC, I have

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wanted to tell the story of these patients, and with a unique access,

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now can. I have come to the Royal Hospital for Neuro-disability in

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London which specialises in the rehabilitation of brain injured

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patients. This is Alex. Staff here will try to assess whether he is

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minimally conscious with fragments of understanding or vegetative,

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with no awareness at all. There are thought to be hundreds of patients

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like him in Britain. Hello, Alex, my name is Clare. You are at the

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Royal Hospital for Neuro-disability. We are going to work together now.

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The hospital has pioneered an assessment programme called SMART

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which explores all five senses, looking for the smallest physical

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responses, anything that might show awareness and allow communication.

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Look at no. We are looking at all the individual senses and breaking

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them down separately so we have a chance to know which areas Alex

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might be responding to. We are trying to see where his response

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levels are. The challenge is to work out whether Alex's brain can

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process site and sounds or are his responses just in voluntary

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reflexes. I would like to know if there is recognition, if there is

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consciousness, if he is happy. Yes, basically, what the levels are.

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Nobody can ever tell us what to expect and what the prognosis is

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really going to be but I would like to know where he is, how alert, how

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conscious. The day after his accident we all went to the pub, a

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great excuse to go to the pub, and signed it. That was his first card

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he ever got. Jess is Alex's girlfriend. There had been going

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out for four months when he had his accident. These are the boys, the

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lads. I think that was prom night. The beer in their hands. There is

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Max, Matt, Liam and Alex. Part of his skull had to be removed and his

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brain is compressed. Beset with health problems, he appears on

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responses. Family, tell me a bit about Alex, what was he like before

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his accident? Vibrant! Fun. A nightmare! Always difficult, but

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absolutely wonderful. Sorry. I'll be all right, I'll be all right. It

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is difficult because everyone asks you the same question, how is your

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boy? He is asleep. Does he recognise you? I don't know. Does

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he talk? No. You answer that 10 or 15 times a day sometimes.

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He woke up for a little bit but he sort of wakes up for 10 minutes and

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then his of St -- then he is asleep for three hours. You have got to

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patient with it. I talk to him. I think if I was him I would want

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someone to talk to made all the time. I talked to him and tell him

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he looks better every day. I hope This is Michael. Hello, Michael.

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Michael, it is mum and dad. knowing if he can remember anything,

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his parents tell him who he is every time he sees him. Your name

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is Michael Edward Taylor. When you went to school we used to take you

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there in the car because it was too far to go by bike. Do you remember

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we used to go over that bridge where dad hit it one day in the ice.

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It scratched his car. You were in there with me at the time. I was

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really cross, wasn't tired? What the families want to know, are

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their words fallen into a void? What is it that remains within? Are

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their thoughts, memories, recognition? Injured in a car

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accident, Michael has already been diagnosed as being in a vegetative

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state. But the RHN has a reputation for detecting awareness that others

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have missed and his parents would like a second opinion. On a good

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day I would like to think there is some level of understanding. But if

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I am really depressed, I am not so sure. I do generally feel there is

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something. One of the problems is, you do not know what he sees. He

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cannot tell us if it is a shadow, an image, light or dark. He may see

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fairly well but he does not understand what he sees. He may not

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even recognise us. That is what this test is all about, is there a

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possibility, is there something inside him? This one area that we

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can work on and maybe things will work out from there. That was

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Coffey. To you remember some of the What did we do next? We decided we

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wanted to be a chef. I did not see that one coming. That was sold.

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came to your meals are you did at college. They were really nice. I

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remember the pudding, I think it was a trio of lemon puddings.

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X-rays were taken two days ago. Something else which haunts the

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families is the idea their sons could be in pain. Vegetative

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patients make me flex muscle responses. -- reflex muscle

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responses. All right, Alex. Sorry. It looks like real distress but if

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Alex has no awareness, his brain cannot perceive pain. Clearly, it

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To minimise any risk of discomfort, Alex is measured for splints. These

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will stretch Lynn's the left and rigid because signals from the

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brain have stopped. It will mean he has something to wear to give him a

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prolonged stretch because at the moment his hands rest quite bent.

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The strapping is all in place. Perfect. That is good. Well done,

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Michael's parents are about to get the results following weeks of

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physical assessments at the Royal Hospital for Neuro-disability.

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of the reasons for his admission is for a second opinion. Clinically,

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after all these bedside assessment and SMART assessment and

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assessments by other disciplines as well, it is confirmed that he is in

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a vegetative state. The diagnosis that Barbara and John feared is

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confirmed. But the RHN offers something unusual, a research

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project at Addenbrooke's Hospital in Cambridge where neuroscientists

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will use brain scans to look for hidden awareness. I know we have

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had a fabulous job done here and when they say put your mind at rest,

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it is hardly the feeling you get when you are finally told that

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Michael is in a vegetative state. Although it has closed some doors,

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there are still doors open so I think it is vitally important that

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we go to Addenbrooke's and especially, it bothers us both

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quite a lot, we do not want to think he is ever in pain and we are

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not there to look after him. As a standard finding in a vegetative

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state, they do not perceive pain but they could respond reflexively

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to application of any pain. would jump. That is right.

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diagnosis means Michael is unaware of himself or the world, but it

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also confirms that he is not suffering. Sometimes when he looks

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at me I think, is he trying to get something through. It is very

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difficult to accept that that is probably not the case. I think it

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is a question of coming to terms, is Michael better off in a

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vegetative state, if been totally unaware, or having some awareness

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and living a very difficult life. As a mother, I'm not sure I would

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not choose the vegetative state but you always want hope. The trouble

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is, you want a big improvement, you do not just want some improvement.

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You want life worth living. A what the family would like to know is,

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is there any brain activity or cognitive activity? If it is there,

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then of course that will give them some hope. It it is not there,

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again it is helpful as well because it gives them an opportunity to

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come to terms with the disability Michael is on his way from Putney

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to Addenbrooke's Hospital in Cambridge. After weeks of

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painstaking observation, a brain scanner will search for hidden

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awareness. Could a machine find Science may provide the answers the

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families are looking for. And the work of this man, neuroscientist

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Professor Adrian Owen. I first came across Adrian's

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research when he used a brain scanner to detect awareness in a

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patient who was really incapable of responding in any way and seemed to

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be in a vegetative state. And this really is a landmark discovery.

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It's got huge implications, legal implications, implications for

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clinical care, for medical ethics, and so on and so forth.

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So, Adrian, let's start off with a very easy question, what is

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consciousness? Whoa! I thought you were going to

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throw me a soft ball to start off with, Roger! Consciousness.

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Professor Owen is a neuroscientist who specialises in searching for

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consciousness in patients on the edge of awareness. His research,

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published in leading medical journals, has seen him dubbed 'The

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Mind Reader' through the use of fMRI, functional Magnetic Resonance

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Imaging. FMRI is a technique that we use for

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looking at brain function. We've been using it to explore whether

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any patients who appear behaviourally vegetative, or

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minimally conscious, can actually do more with their brains. Is it

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possible that they can activate parts of their brains in a way that

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would allow us to conclude that they've got some residual functions

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that are not apparent from clinical Michael will be given simple

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instructions, to see if he can respond with his mind.

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We're going to ask him to think of certain things and we're going to

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see if we can pick up the brain activity that is associated with

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him thinking those things. OK, you are doing ever so well.

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One of the interesting things about the brain is, if you imagine doing

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some things, the areas that will be activated are the very same areas

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that will be activated if you were to actually do those things.

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And we'll ask him to imagine playing a game of tennis. Now the

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reason we do this is not because we want to know whether he can play

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tennis, but when people imagine playing tennis, it always activates

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an area called the pre-motor cortex, right here. In which case, we'll be

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able to detect that in his brain, and we'll know that he is making a

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response. It's not a response with his body, but it is a response with

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his brain. Well done, you're doing really well

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there. Well done. OK, we're just doing a couple of

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quick structural scans, just to make sure we have Michael in the

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correct position. OK, Michael, we're going to start

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the scan now. We want you to try and imagine something for us. You

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are going to hear just two words. You'll either hear the word

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"tennis" or you'll hear the word "relax." When you hear the word

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"tennis," I want you to really imagine that you are playing a game

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of tennis. Just keep imagining playing tennis, and do that until

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you hear the word "relax," and then what I want you to do is to just

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rest. And we'll do that a few times backwards and forwards between

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imagining playing tennis and then relaxing.

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Off we go, then, guys. So the areas that are in red.

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The scanner can pinpoint the areas of the brain that are working

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hardest while someone is thinking. These receive more oxygen-rich

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blood, which show up as red blobs on the screen.

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So it's the areas in red that we're really interested in.

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Initially, Michael's scan looks promising.

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But as you can see, it's actually very variable.

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Michael's brain activity must follow the pattern of commands for

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the team to conclude that he is responding. Otherwise, it could be

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chance. They said you were absolutely

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brilliant. His parents will get the results

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later. The use of brain scans to search

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for awareness has sparked international interest, such as in

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Canada. List is the City of London, Ontario. -- this is.

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This is Scott. For over a decade, every medical assessment has

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concluded he is vegetative. But his parents, Jim and Anne, are

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convinced Scott can respond. Give us a thumbs-up, Scott, if you

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want Dad to drive! What do you think? You're not going to make a

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decision. Give us a thumbs-up!

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Or maybe you are saying no? You don't want Mum in your face. I

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think he's shutting us out. You just don't want to respond right

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now, do you? He was crossing an intersection and

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he got hit by a police car, and it just T-boned him, sent him spinning

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down the street. And it was just catastrophic.

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Catastrophic, yeah. They really gave us no hope

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whatsoever. They gave him two years to live, and that's 12-and-a-half

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years ago. At the hospital, most of the staff

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go with the party story that he is vegetative.

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Do you think Scott can understand what you're saying to him?

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Oh, yes, yeah, he does. And he responds and he uses his eyes, he

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uses his thumbs, for yes and no. Hi, Scott, it's Brian Young, Dr

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Young here. Could you try just lifting your thumb for me to

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command? Just lift your thumb up? You've been his doctor for ten

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years? Yes, I've seen him repeatedly and

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I've never seen any evidence of responsiveness in Scott. Do you

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think perhaps that it's either that he'll do it for his family, or

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perhaps it's wishful thinking on their part? Yes, it's hard to say.

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It could be that it's inconsistent, that he sometimes does respond in a

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meaningful way to them, but one has to go with one's own observations,

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and I think there is the Scott is on his way to the

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University of Western Ontario. There we go.

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He'll meet Professor Owen, who's now based in Canada.

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Scott, right, this is your big chance. We really want you to try

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as hard as you can to imagine playing tennis for us. OK, we're

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going to ask you to imagine playing tennis quite a few times while you

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are in the scanner. And if you can do that, then we'll be able to see

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your brain activating. So I want you to imagine you are standing on

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a tennis court and moving your arm around as much. As you can, all

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right? So we're going to put you in the scanner now, just do your best,

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stay awake. This is a big challenge for brain-

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injured patients. It requires hearing, recall, understanding, a

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functioning mind. OK, Scott, it's Adrian speaking,

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and we're ready to start the first scan. This is where I want you to

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We've got a little bit of activity OK, yeah, we've got something.

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OK, this is what we want, here. OK, so we've definitely got more

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activity than we had previously. Something remarkable is happening.

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Confounding more than a decade of medical assessments, Scott is

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We're on tennis. Yeah? That's looking pretty good, actually,

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Fergus. That's quite striking, isn't it?

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Yes. Scott's been in the scanner more

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than an hour and needs a rest, but the team feel his responses clearly

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suggest awareness. Didn't you do good in there? I

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heard you did real well. He would like you to come back

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tomorrow. Because he said you are doing so well that he'd like to try

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a few more things tomorrow. Do you think you'd be up to it? Where's

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your hand? You trying to give us the thumbs-up? There, we got a nice

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big thumbs-up. OK, he's willing to OK, Steven, going to let you listen

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to some of your book, Pillars of the Earth, OK?

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Life can change utterly in a moment. All the families in this film know

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He was driving to work when his van came off the road in ice and hit a

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telegraph pole. Are you going to turn your head

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around? Thank you. The clustered shafts of the piers

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rose gracefully through the gallery and became the ribs of the vault,

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curving over to meet in the middle of the ceiling.

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Steven was very easy as a kid. No problems with him. I mean, he

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wasn't a push-over, don't get me wrong. He had his own mind, but

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Steven was the type of person, if you really had a real blow-out with

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him, five minutes later, "Hi, Mum, can you get" you know? He was that

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type of person. He would come around.

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He wouldn't be holding back for days and not speaking, he'd just

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come around, just like that. He was pretty active, into different kinds

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of sports. He had lots and lots of friends. He liked his family, very

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family-oriented. But Steven cannot communicate what

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memories he has of weddings, family celebrations, life before his

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accident. Or whether he knows who or where he is.

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The doctor who was on at the time took us aside and said, he

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basically said that he didn't think it was too bad at this point. He

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said that he kind of expected Steven to come around between 12

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and 16 hours. He actually stayed in a coma for three-and-a-half months.

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And then at some point, he did open his eyes. But he didn't wake up in

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the sense. No, no. That we would understand it.

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That's right, yep. Sorry, Steven, this is a little bit

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different from the usual. In the search for answers, Steven's

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parents, originally from Glasgow, have brought him to Professor Owen.

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What are you hoping to learn here? We've always felt that Steven is in

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there, right? And we've used different techniques about trying

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to get him to answer for a yes or a no. It might be two blinks of an

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eye for a yes, the raising of his hand for a yes. And definitely, at

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times, he can do that, but it's not consistent. So even ourselves,

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we're always left with, was he just blinking his eye right now, or was

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that just a natural movement, or did he definitely say yes?

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John and Ann have been hoping for When you hear the word tennis, what

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we want you to do is to imagine that you're playing a game of

0:28:080:28:13

tennis. Now, I don't need you to run around the court, you can stand

0:28:130:28:15

still. Tennis.

0:28:150:28:20

Yep, that is really, really cool. Just like Scott, Steven's brain

0:28:200:28:24

activity is matching the commands he's being given in the scanner.

0:28:240:28:27

And we're seeing this activity right at the top of his brain, and

0:28:270:28:31

those are in the motor regions. Those are the areas of your brain

0:28:310:28:35

that if you were able to play tennis, those are the areas of your

0:28:350:28:39

brain you'd use to produce those types of movement. So that's very

0:28:390:28:45

exciting. Good, good.

0:28:450:28:50

That was really exciting. This is strong evidence of

0:28:500:28:55

awareness. But can he do more? The question is, what do we do

0:28:550:28:59

next? We could ask a question, something

0:28:590:29:02

that's actually relevant to him. I was wondering if there's

0:29:020:29:04

something that might be relevant to him?

0:29:040:29:07

The team plan a series of personal questions only the family could

0:29:070:29:17
0:29:170:29:21

He's moving in the scanner - so the team cannot interpret the results.

0:29:210:29:31
0:29:310:29:37

Steven's sense of identity is still unclear. Part of me wanted to say,

0:29:370:29:42

do you know who you are? That type of thing, because batter so

0:29:420:29:48

important to us, to know that he is aware of who he is. It would be

0:29:480:29:52

nice to know how he is feeling, if he is fearful, try not to be

0:29:530:29:57

fearful because we are always here for him. If he knows we are going

0:29:570:30:07
0:30:070:30:08

to be his champions, that will make him feel better. Really good, you

0:30:080:30:18
0:30:180:30:19

did well, excellent. Really good, you did excellent. It is all good,

0:30:190:30:28

man. Going in the right direction. Does that suggest that he is

0:30:280:30:34

conscious? That is what I would conclude, yes. I feel quite

0:30:350:30:39

confident about that. On the basis of a single scan and patients I

0:30:390:30:43

have seen this happen from time to time before, I'm pretty confident

0:30:430:30:50

that he has a level of awareness. think it is hard for people to

0:30:500:30:58

imagine what it must be like to be in its Stephen's situation. Is the

0:30:580:31:02

fact that he is awake and aware, that he is conscious, does it make

0:31:020:31:10

it better for him or worse for him? We do not know the answer. I can

0:31:100:31:14

only imagine it would be like being buried alive. You have no way of

0:31:140:31:20

being able to communicate with the outside world, even to indicate

0:31:200:31:30

that you are awake and aware. you're in. But there is hope. Some

0:31:300:31:34

patients do emerge. In Putney, there is someone who knows what

0:31:340:31:38

it's like to have an active mind trapped in a body he couldn't

0:31:380:31:48
0:31:480:31:53

control. This is Stewart. As so often it was a car accident that

0:31:530:31:57

left him brain injured and unable to communicate. Doctors thought he

0:31:570:32:07

might be in a vegetative state. were told when we saw the

0:32:070:32:14

consultant, when Stewart was still in intensive care, that basically

0:32:140:32:19

at six months or a year, what if you saw was what you would get.

0:32:190:32:24

That did not seem right to me. I dismissed it straightaway.

0:32:250:32:29

Thankfully, in Strood's case, and it is not always the case, I am

0:32:290:32:34

aware of that, it has proved incorrect and we have got him like

0:32:340:32:40

he is today. -- in Stewart's case. Stewart's slowly emerging

0:32:400:32:43

consciousness was spotted by his family and staff here. He was among

0:32:440:32:46

the early patients sent to Cambridge where brain scans

0:32:460:32:55

confirmed his growing awareness. was really good because Stewart was

0:32:550:33:01

not doing much at the time. He said Stewart had a learning ability and

0:33:010:33:06

he felt that at some point he would use an electric wheelchair. It gave

0:33:060:33:11

us some real hope and determination that there was more in there that

0:33:110:33:18

we would bring out and we have. after four years in Putney, Stewart

0:33:180:33:27

is ready to go home. It is all steam ahead and we are very excited.

0:33:270:33:31

Stewart is counting down the days. But he still remembers a time when

0:33:310:33:40

communication was impossible. How frustrating was it not being

0:33:400:33:50
0:33:500:33:50

Apology for the loss of subtitles for 67 seconds

0:33:500:34:57

You would scream at a wall? Would In Cambridge, Michael is having

0:34:570:35:07
0:35:070:35:09

another session in the scanner. His first set of results were negative.

0:35:090:35:13

I guess one of the most important things is we are going to repeat

0:35:130:35:19

what we did on Monday. We will look again to see if we can get a

0:35:190:35:24

response. Will we see some brain activity? That is important because

0:35:240:35:29

these patients all fluctuate. Sundays they may respond and other

0:35:290:35:39
0:35:390:35:40

days they won't. Hello, Michael, it is Adrian again. You were doing

0:35:400:35:46

really well. We want you to do what we asked you to do in the week.

0:35:460:35:51

Tennis. But from all Michael's scans, the team have not been able

0:35:510:36:01
0:36:010:36:04

to detect any evidence of awareness. His parents, Barbara and John, have

0:36:040:36:11

just been given the news. This is like a bereavement. It is like a

0:36:110:36:18

bereavement which will not end in two weeks or three weeks. We are

0:36:180:36:27

still treating him exactly the same way now as we did. We are obviously

0:36:270:36:36

upset. I think we will take comfort from it. I am really glad that you

0:36:360:36:45

came and that we scanned my God. We gave him five chances -- that we

0:36:450:36:50

scanned Michael. We gave him five chances to see if he could produce

0:36:500:36:58

a response on Oct. Unfortunately, on five occasions, we did not see

0:36:580:37:03

anything that suggests he is aware of the situation he is in. He had a

0:37:030:37:12

good crack at it. Yes, he did. sure, had he been in some position,

0:37:120:37:19

he would have done. The journey to find a voice for these patients is

0:37:200:37:25

long and hard. But all the families involved in this research, it is a

0:37:250:37:31

journey they must travel, no matter what the odds. We showed something

0:37:310:37:36

like 20 % of these patients can generate these patterns of activity

0:37:360:37:41

with their brains. It was important for us that people keep that in

0:37:410:37:46

proportion. It does not mean all vegetative patients are conscience

0:37:460:37:54

but Ace simple -- eight small minority seem to be. In Putney,

0:37:540:37:59

Alex has not been able to be assessed. Repeat infections mean it

0:37:590:38:09
0:38:090:38:10

will be a year before he is able to go to Cambridge. In Canada,

0:38:100:38:14

Stephen's parents have brought him back for another opportunity to

0:38:140:38:19

make contact. It is a chance to resolve their biggest question,

0:38:190:38:29
0:38:290:38:29

does he know where he is? Another go in the scanner. Last time, he

0:38:290:38:34

revealed he could respond in the scanner. Now the communication goes

0:38:340:38:41

much further. Stephen is asked about a family member born three

0:38:410:38:46

years after his accident. I want you to imagine playing tennis, only

0:38:460:38:52

if the answer to the question is yes. The question is, does your

0:38:520:38:56

sister have a daughter? We are going to start the scan now.

0:38:560:39:06
0:39:060:39:13

Imagines. He is quite still. He is He has this whole band of activity.

0:39:130:39:21

Well done, that was fantastic. That was absolutely wonderful, very good

0:39:210:39:26

activity. We could see your brain lighting up when you were trying to

0:39:260:39:33

answer the question. That was absolutely great. I asked him

0:39:330:39:40

whether his sister Jen, whether he thinks she has a daughter or not.

0:39:400:39:45

That was the question. What we were interested in doing is finding out

0:39:450:39:50

whether he is aware of that and can lay down new memories since his

0:39:500:39:54

accident. He very clearly imagined playing tennis when I asked him to

0:39:540:39:59

do that. He was activating the top part of his brain there which is

0:39:590:40:04

what I told him to did took say yes. There is no question he was

0:40:040:40:09

activating the top part of his brain. I think he does know about

0:40:090:40:15

Kayleigh. I think that is an important piece of information.

0:40:150:40:18

sister will be delighted to hear that as well, the whole family!

0:40:180:40:27

Even Kayleigh! It is another extraordinary moment. Stephen has

0:40:270:40:32

shown he is continuing to create and store memories about his family.

0:40:320:40:37

It suggests he is aware of himself and those around him, but the

0:40:380:40:45

extent of his abilities remains unknown. You did absolutely great.

0:40:450:40:49

I don't know if you heard that, he said you were a superstar. You

0:40:490:40:52

answered the questions right and we will tell Kayleigh that you know

0:40:520:41:02
0:41:020:41:03

all about her. Fabulous. What will the knowledge that Stephen is able

0:41:030:41:07

to build up memories, what will that mean for the future and the

0:41:080:41:13

way you relate to him? It gives us the impression that he will be able

0:41:130:41:18

to keep up with the books, he will be able to stop at a chapter, start

0:41:180:41:23

at the next chapter, he remembers what he was told previously. It is

0:41:230:41:31

good. It's very good. As we have said before,... We know it is not

0:41:310:41:35

just white noise he is listening to. He is retaining net and eventually

0:41:350:41:44

he will tell us, I don't like that book, I want something else. Scott

0:41:440:41:49

is also back for another session in the scanner and will again confound

0:41:490:41:59
0:41:590:42:01

the diagnosis that he is vegetative. The question is, is a banana

0:42:020:42:08

yellow? The questions start easy, but Scott has to make complex

0:42:080:42:13

choices. This time, if he wants to answer yes, he has to imagine

0:42:130:42:18

walking around his house which produces another distinct pattern

0:42:180:42:28
0:42:280:42:28

of brain activity. This is almost exactly the same as it was. There

0:42:280:42:34

is a big peak fare in the imagined task, a trough when he is relaxing.

0:42:340:42:38

Then another peak when he is imagining. It tells us he is saying

0:42:390:42:43

the banana is yellow. We told him to imagine moving around in his

0:42:430:42:50

house when he heard the word imagined. Communication established,

0:42:500:42:56

Scott can in theory be asked anything. Science has given him

0:42:560:43:06
0:43:060:43:13

But what should you ask a man who last spoke 12 years ago? Probably

0:43:130:43:20

the kind of questions we would like to ask him... Would upset him.

0:43:200:43:24

think. Why do you say that? Because it would be very emotional

0:43:240:43:32

questions. Do you ever feel that Scott might have preferred not to

0:43:320:43:42
0:43:420:43:43

be here now? The question is quality of life and wonder what he

0:43:430:43:52

would want, most definitely. It has crossed our mind, crossed my mind.

0:43:520:43:56

We want to make the best that we can for him and will continue to do

0:43:560:44:04

so. He was such an active person, both mentally and physically. I

0:44:040:44:09

don't know. He is not one to give up. I think if it was me, I

0:44:090:44:19
0:44:190:44:24

He is such a clear responder, they reached something of fundamental

0:44:240:44:29

importance to the families, and briefly, they lift the curtain on

0:44:290:44:33

the hidden world of these patients. We're going to ask you a question

0:44:330:44:36

about you this time, a question about you and the way that you are

0:44:360:44:40

feeling, and I want you to try and answer this question for us. I want

0:44:400:44:44

you to tell us whether you are in any pain? Think about your body.

0:44:440:44:50

Does any part of your body actually hurt right now? Are you in pain? If

0:44:500:44:53

the answer to that question is a yes, when you hear the word

0:44:530:44:56

"imagine," I want you to think about moving from room to room in

0:44:560:45:01

your house. Think of all the rooms, and the furniture and the pictures

0:45:010:45:06

on the wall, and where the television is. Look around the room

0:45:060:45:10

in the mind and try to imagine what it's like. If the answer to the

0:45:100:45:14

question is a no, I want you to imagine playing tennis. The

0:45:140:45:18

question for you to think about is, are you in any pain? Does any part

0:45:180:45:28
0:45:280:45:33

Could you ever imagine Scott making a decision about whether he wanted

0:45:330:45:43
0:45:430:45:47

Well, if he was able to be able to make that decision, and to, for us,

0:45:470:45:57
0:45:570:46:00

to be sure that's what he wants, we would have to go with what he wants.

0:46:000:46:05

He would have to bring up the subject. If he was able to, and

0:46:050:46:09

bring it up, then we could, or we would talk about it, but it's not

0:46:090:46:14

something I would ever broach with him, or anything else. It would

0:46:140:46:17

have to be totally his decision, and he would have to bring it up,

0:46:170:46:23

because we're here, and we will be here for him for as long as we can.

0:46:230:46:28

So, no, I wouldn't ever bring up something like that to him.

0:46:280:46:31

If the answer to the question is a no, when you hear the word

0:46:310:46:36

"imagine," I want you to imagine playing tennis. So the question for

0:46:360:46:44

you to think about is, are you in any pain? Imagine.

0:46:440:46:48

Isn't that where we were in the last scan? That is where we were in

0:46:480:46:53

the last scan. Yes, looks like that.

0:46:530:46:58

That's bang-on where we were in the tennis condition. Remember, you

0:46:580:47:07

said it was a little bit further back?

0:47:070:47:11

Relax. Yeah, yeah.

0:47:110:47:15

Ooh. Adrian, what's happening?

0:47:150:47:18

We're seeing activity in exactly the same area of the brain that was

0:47:180:47:20

activated during the tennis condition, which is, of course,

0:47:200:47:26

really a relief. Right, so what does that tell us

0:47:260:47:30

that he's imagining trying to answer?

0:47:300:47:33

It tells us that he's imagining playing tennis, and I've told him

0:47:330:47:37

to imagine playing tennis if the answer to the question is no.

0:47:370:47:41

So that would suggest he's not in pain.

0:47:410:47:49

That would suggest that he's not in pain, which is a big relief.

0:47:490:47:52

Have you ever asked that question before of any patient?

0:47:520:48:00

No. No. That's amazing, that's bang-on where it was in the

0:48:000:48:05

previous scan. It's exactly where it was in the tennis-playing scan

0:48:050:48:12

and it's getting bigger and bigger. And it's in a position far away

0:48:120:48:15

from any of the areas that were active during the spatial

0:48:150:48:18

navigation scan. Could it just be a fluke?

0:48:180:48:24

No, because what we had is two separate networks of brain activity.

0:48:240:48:28

One for tennis and one for spatial imagery. And we're asking him to do

0:48:280:48:32

one of those two things to answer the question. So the chances of one

0:48:320:48:35

of those two things happening again is negligible.

0:48:350:48:40

He's making a conscious choice? He's making a conscious choice

0:48:400:48:42

between two possible responses, and we measured those responses at the

0:48:420:48:46

start of the study. Is this the most significant

0:48:460:48:48

question you've ever asked a patient?

0:48:480:48:54

By a long shot, yes! This is extremely important information.

0:48:540:48:57

This is exactly what we've been working to achieve, to be able to

0:48:570:49:00

ask questions that might actually make a difference to patients'

0:49:000:49:06

lives. You're a pioneer. You're the first

0:49:060:49:11

person that's been able to answer a clinical question like that. That's

0:49:110:49:21

so good, sweetheart, I'm proud of you. Daddy will be proud of you.

0:49:210:49:24

In Britain, the courts have allowed some vegetative patients to die by

0:49:240:49:30

the withdrawal of feeding tubes. This scanning technology is not a

0:49:300:49:34

pathway to ending life. It's impossible to assess the competence

0:49:340:49:42

of patients to make that decision. Rather, the aim of families and

0:49:420:49:48

scientists is to make difficult lives a little better.

0:49:480:49:51

We can ask people if they are depressed, or if there are things

0:49:510:49:55

that we could do to improve the quality of their lives. And these

0:49:550:49:58

might be very simple things like the entertainment that we provide

0:49:580:50:03

them with. Or the times of day that we decide that they should be

0:50:030:50:07

washed or they should be fed. And, you know, all of these things can

0:50:070:50:12

improve people's quality of life. Scott still appears vegetative in

0:50:120:50:14

all physical assessments, but his specialist agrees the scans tell

0:50:140:50:22

the true story. I was amazed, to be honest. He had

0:50:220:50:25

the clinical picture of a typical vegetative patient. No emotional

0:50:250:50:31

response, no fixation, or following with his eyes. He didn't have any

0:50:310:50:33

spontaneous movements that looked meaningful, and I was quite

0:50:330:50:36

impressed and amazed that he was able to show these cognitive

0:50:360:50:45

responses with fMRI. It was really very convincing to me.

0:50:450:50:51

And he believes the research re- writes the rules.

0:50:510:50:54

We can no longer just rely on behavioural responses to tell if a

0:50:540:50:57

person is vegetative or not. Twenty per cent of these patients really

0:50:570:51:00

are capable of showing cognitive responses and we need these special

0:51:000:51:03

techniques to show that. I think that has to be introduced into the

0:51:030:51:13
0:51:130:51:19

Careful, up the ramp. Alex is finally well enough to be

0:51:190:51:22

assessed in Cambridge. On several occasions in the last year, he's

0:51:220:51:32
0:51:320:51:32

been critically ill. But the wait is now over.

0:51:320:51:36

You must have thought this day might never come.

0:51:360:51:40

Yeah, almost a year ago that we were supposed to be here. So, yes,

0:51:400:51:44

it's quite exciting. You must have lots of questions

0:51:440:51:47

you'd like answered. Um, yes!

0:51:470:51:53

Obviously, yes, but I just can't think of them at the moment. No, I

0:51:530:51:57

just want to know what's going on, really. We've had such a horrible

0:51:570:52:00

year and it's nice to actually get something going that looks positive

0:52:000:52:06

for a change. Hi, Alex, we're just going to

0:52:060:52:10

straighten your legs down just a little bit. See how straight we can

0:52:110:52:14

get them before we get you in the scanner. Whoops! Where are you

0:52:140:52:23

going? Just relax for us. Relax. Everything is going to be all right.

0:52:230:52:25

Are you going to wake up for us, Alex?

0:52:250:52:30

Well done, you're doing really well. The unique shape of Alex's brain

0:52:300:52:32

presents a challenge to the research team.

0:52:320:52:36

We're going to ask you to do a task for us. You will hear two words.

0:52:360:52:39

You will hear two words. The major problem we actually have

0:52:390:52:42

is that because he's had a craniectomy, so we have got the

0:52:420:52:45

missing part of the skull, so his brain is significantly squished

0:52:450:52:48

here, it's all collapsed in. So we're not quite sure where we are

0:52:480:52:52

going to be looking with the activation.

0:52:520:52:59

Do you want to have a look at that? Yeah, interesting.

0:52:590:53:04

There are so many things that you must want to know?

0:53:040:53:08

Yeah, what he can and can't do would be good. Cos I think he can

0:53:080:53:12

do things that Sally doesn't know if he can do things. So it just

0:53:120:53:14

depends on what the tests say, really.

0:53:140:53:16

Sometimes, when I speak to him, I think he's really listening,

0:53:160:53:22

hopefully that he can. But other times, he's in his own little world.

0:53:220:53:26

So I'm not too sure. 50-50, really. When I'm having a stern word with

0:53:260:53:31

him, he listens. Alex, just relax, calm down. You're

0:53:310:53:35

OK, you are doing really, really well. We're almost finished. We're

0:53:350:53:38

going to show you some things on the screen again.

0:53:380:53:42

Alex is shown a series of images. A chequerboard, colours, shapes,

0:53:420:53:52
0:53:520:53:54

random objects and faces, The team want to know if his brain

0:53:540:53:57

registers this information as a face, or house, rather than just

0:53:570:54:07
0:54:070:54:07

light coming in. We've seen some activities, but we

0:54:070:54:12

need to check that they are genuine activities. So still anything that

0:54:120:54:19

we've seen today, we really need to analyse it in a better way.

0:54:190:54:23

The results will come later. In your own mind, do you feel in

0:54:230:54:27

your heart of hearts that he is aware?

0:54:270:54:29

Well, he's strong enough to get through all he's been through

0:54:290:54:34

before, so I don't see how he can't through everything else. I'm just

0:54:340:54:37

praying for him all the time, hopefully he'll get better. You

0:54:370:54:40

know, we've seen him better than this, before the sickness started,

0:54:400:54:44

so if he can get there, he can get there again, definitely.

0:54:440:54:50

You've been an incredible support. I hope he knows that! I think he'd

0:54:500:54:52

have done the same for me, definitely.

0:54:520:55:01

Bye, Alex, see you next week. Love you loads. He doesn't care, does

0:55:010:55:04

he?! Yes, he does!

0:55:040:55:07

After a heartbreaking diagnosis, Michael is back at his permanent

0:55:070:55:11

hospital home. But nothing has changed for his parents. The faith

0:55:110:55:16

of the family endures. You just think he's going to start

0:55:160:55:23

talking to you, don't you? Yes.

0:55:230:55:26

All the staff here seem to think that when we come and talk to him,

0:55:260:55:33

they see something happen when we come, so that's great. It's

0:55:330:55:38

fabulous. We would like to think that he could sense that Mum and

0:55:380:55:46

Dad are here, and we're still here for him.

0:55:460:55:51

Put some music on, then, shall we? I was playing some of the oldies

0:55:510:55:56

the other day. Some of the ones you used to listen to when you were

0:55:560:56:00

little. Who were the two Scottish guys, I would walk 500 miles?

0:56:000:56:07

Proclaimers! Proclaimers. I would walk 500 miles.

0:56:070:56:17
0:56:170:56:37

And this is why it all matters, for days like this. A moment Stewart

0:56:370:56:40

and his family thought might never come.

0:56:400:56:43

So I'm saying, on behalf of everybody at the Royal Hospital of

0:56:430:56:49

Neuro-disability, to wish you the very, very best for going home.

0:56:490:56:52

These days are, well, if they are special for us, it doesn't compare

0:56:520:56:57

with how special it is for you and your mum and dad. But it's what we

0:56:570:57:00

just live for, days when people can go off and look after themselves,

0:57:000:57:04

be looked after at home, and be so much better than they were, like

0:57:040:57:14
0:57:140:57:30

you are, so much better than when Is it good, Stewart?

0:57:300:57:35

It's amazing, at long last. It just seems a bit overwhelming at the

0:57:350:57:38

minute. I think it will slowly sink in when the weekend has gone by and

0:57:380:57:48
0:57:480:58:02

I loved being at home? Alex has returned to Putney.

0:58:030:58:06

Against all the odds, his mum Sally has had good news.

0:58:060:58:08

You did really, really well, sweetheart. You did really well.

0:58:080:58:12

Yeah? The tests showed that you are in there and we've just got to

0:58:120:58:17

fight to get you back out again. The results suggest he is conscious

0:58:170:58:23

some of the time and may be able to recognise the faces of his family.

0:58:240:58:31

Alex's journey has begun. What would your ambition be for him

0:58:310:58:39

for the future? Realistically.

0:58:390:58:41

Realistically, communication, awareness, and as long as he's

0:58:410:58:45

happy. Cos we've had no communication now for 18 months.

0:58:450:58:49

What does that knowledge of his growing awareness mean to you?

0:58:490:58:55

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