Speechless

This programme contains some strong language

As many days of the year as possible, I begin here.

Other than constant chatter in my head,

it's a time that is largely language-free.

If, that is, it is ever possible to be language-free.

In 2011, my brother-in-law, Dennis, had a stroke that significantly

affected his ability to use language -

particularly cruel for a man whose living had been as a journalist,

a writer.

Until Dennis had his stroke,

I hadn't realised just how common aphasia is.

Dennis had joined the ranks of over a third of a million people living

in the UK whose language, to some degree, has gone missing -

the vast majority the result of stroke.

People like Barry.

I...need...some...help.

And Junior.

I'm anxious about language.

-You're anxious?

-Yes.

Two men who know what it is to live in a world where a sudden storm in

the brain has left them unable to rely on what is the invisible

mainstay of life - language.

This is a film about language and its loss,

about aphasia and about the organ that controls it all.

Queen's Square in London and the National Hospital for Neurology

and Neurosurgery.

Everything that goes on behind these walls is about the brain.

In February 2017, I meet Barry,

an inpatient on the hospital's neuro-rehab unit.

Barry has been in hospital every day since a devastating stroke

four months earlier.

Once a gym-loving fitness fanatic,

he now finds himself in a wheelchair barely able to use the right-hand

side of his body,

and barely able to speak.

He's now halfway through a stay on the rehab unit that's intended to

help him back into the world.

So we did talk about this earlier in the team meeting.

-Yes.

-We were talking about...

..thinking about making a visit home.

-Yes.

-Do you want to talk about that?

Months, months.

Three months.

You haven't been home in three months?

-Four months.

-Four months.

Four months.

Four months.

Do you mean it's four months since the stroke?

-Yes.

-Or you're not due to go home...

..for four months?

-Ah...

-Since the stroke?

Four months.

Four...months.

Four months haven't

go home.

You haven't been home in four months?

Yes. Yes.

-It's a long time.

-Ah...

Are you looking forward to going home?

-No.

-No.

Why not?

-Are you scared?

-Yeah.

Yeah. What makes you frightened?

Four months. Four months.

Four months.

So this is the CT scan,

so the Cat scan that was performed on Barry when he was initially

admitted to Watford General Hospital.

So in this scan the white areas, the bright white is bone.

And what you can see here are Barry's eyes and his nose.

And it is immediately apparent, is it, that there's a lot of...

-I couldn't see it terribly clearly that there is a lot of damage.

-OK.

So that's the initial scan.

OK.

This is the normal side of the brain, the right side.

-Yeah.

-And this darker bit...

..is what we call kind of the low density.

So it's much darker.

This is all the affected area of the brain here.

So, basically, the brain tissue,

when the blood supply has been cut off, the brain tissue dies.

This is the brain of a man in his 70s who died of a cancer-related death,

so it's essentially, from a neuropathological perspective, a normal brain.

The vast majority of the brain is the cerebrum,

which is divided into left and right cerebral hemispheres.

So when you're looking from the outside of the brain, what you are

seeing, really, is the cerebral cortex.

So different areas of the cerebral cortex

are involved in different functions, different neurological functions,

so the area I've marked in blue at the back of the temporal lobe

is Wernicke's area,

and that's an area that's important in the comprehension of language.

The other important speech area, which I've marked in red here,

is at the bottom of the frontal lobe, the left frontal lobe.

That is called Broca's area, and that's responsible for the

production and planning of speech.

So in the vast majority of people,

language areas are entirely on the left hemisphere.

What do you understand language to be?

I would say language is something that's almost completely uniquely

human and it's one of the things that has enabled us

to do so well as a species.

And the reason for that, I think,

is because it allows us to model the world.

So how can we plan for something that we're going to do next Wednesday

if we don't have language? So "next Wednesday" allows us to talk about a

specific potential event forward in time and without language we can't

really do that. We can have a concept of time and a concept of things

happening in the future or the past, and I suspect other animals do that,

but for precise planning, we really need language.

And language is a form of abstraction.

It's a way of abstracting the world and getting control of it.

Barry, 55 years old - still young for a stroke.

Why had it happened? The frightening thing is that it wasn't fully clear.

The only certainty is that for this landlord and father of three

grown-up children, married to his childhood sweetheart, Linda,

life has been dramatically knocked off course.

Now Barry is living alongside other men and women recovering from a

variety of neurological conditions,

their days divided between therapies and family visits.

Barry, what's your favourite biscuits?

-Jammie Dodgers?

-Yeah.

Linda visits most afternoons,

often bringing cake and biscuits to share with the other patients.

One day, she tells the story of Barry's stroke,

describing how an ordinary working day had ended with the whole family

concerned that Barry had not come home.

Jess was calling all the hospitals.

She thought maybe you'd been in an accident and they hadn't identified

you. So Jess was on the phone all night.

Sam calling, calling all night all the hospitals.

So then, at about 7.30 in the morning,

Sam called a private detective and he was able to tell us roughly the

vicinity where your phone was.

So Ben and Sam jumped in Ben's car and went towards Borehamwood,

where your phone was.

Jess and Tammy went down the A1 and Tammy said, "Stop, stop!

"I think that's my daddy's van."

And Tammy ran back down the A1 and found you.

-Oh!

-And then she called the ambulance.

We've estimated you were maybe 12, 15 hours in the van.

Ten. Ten hours.

Ten hours.

-What's ten hours?

-In a van?

Yeah. Oh...

Do you remember being in the van, Barry?

No.

It's good you don't remember that. It's better.

I worked hard to...

..accept what had happened...

..but I couldn't really do that until I got over the shock,

the shock of him being in the van on his own all night,

the shock of him having the stroke.

Then I worked on accepting the situation it put him and myself...

..and our children.

Barry was always a real people's person, full of life.

A bit of a lad. I just think...

..at times he must feel very lonely, very isolated.

Not fully understanding what one is saying.

Not being able to join in the conversation.

So, for me, that's the biggest challenge.

-COMMENTATOR:

-It's a flick on from Junior Agogo. It's Richard Walker.

Can he find Ryan Williams? He does! It's Agogo!

Surely! It is!

This is Junior Agogo,

former Premier League footballer and former patient on the neuro-rehab unit.

Great ball to Agogo. What a goal!

Junior had had a stroke in January 2015 when he was just 36 years old,

two years after ending his football career.

Today, he lives in London with his dog, Blanket, and his mother, Jeannie.

The flat is a shrine to his football days.

He's made a good physical recovery from his stroke,

but he still struggles greatly with the impact that it's had

on his language.

Do you remember how long it was before Junior was able to speak again?

I think it's after... It's after a year.

-No, no, no.

-No, after six months, sorry.

No, no, no. After three months.

Was it? No, no, no, three months, the first word you said was...

-BOTH:

-"Fucking hell."

-Yeah, yeah.

-"Fucking hell."

And I said, "Don't be swearing!"

Then the second one was...

There were some things that he was saying and I couldn't understand

what it was. He was trying, he was struggling, you know?

I think it was after six months that you started... The speech started coming out.

-Yeah, yeah.

-When he started doing his speech therapy.

Did they find out why you had a stroke?

-No.

-No, they still can't, you know...

-No.

But...

I'm alive, I'm well.

-Let's see what...

-Yeah, but deep down in your heart,

there is something bothering you.

-Yes, yes, yes.

-Yeah?

OK, look, let's get on to my football days, yeah?

HE LAUGHS

-Oh, God!

-Yeah!

So, where are we here?

This one was Barnet.

Barnet.

That's Nottingham.

Nottingham. Bristol.

-There's Ghana.

-Yeah, Ghana, as well.

Ghana? How many times did you play for Ghana?

27 times.

Wow! How many years did you play for?

For 17 years.

-At the very top level?

-Yeah, yeah, yeah.

Come on.

-This is the Hall of Fame, is it?

-Yeah.

This one.

-Michael Essien.

-Yeah.

-Chelsea.

-Yeah.

Yeah.

Samuel Eto'o.

-Oh, right.

-Didier Drogba.

Wow, Drogba. Are these guys you're in touch with?

Um, now, nobody gets in touch with me.

LAUGHTER

-Really?

-Yeah.

Do you think that's because... Is that you, because you're not getting

-in touch with them?

-I don't know, man,

because I used to talk with a couple of boys in the national team,

but when the stroke happened, they all said, "No".

How do you know that? Do you mean they said "No",

-or you stopped talking to them?

-Because I couldn't speak.

-Yeah?

-Yeah.

Yeah, Blanket!

Blanquito, out.

Are you still struggling to find words,

or are you just not putting yourself in a position where you use them

because you're anxious about language because of what happened to you?

Yeah, yeah. I'm anxious about language.

-You're anxious.

-Yes.

What about finding the words and stuff?

-Are you able to...?

-No, no, I can find the words, but I'm anxious

to... Because I am anxious if I get the word wrong.

Does that happen often?

-Oh, many times.

-Yeah.

He's just struggling to bring out that word,

that particular word he wants to say, and that word is not

coming out, you know? So that's also...

I want to speak like you three.

-Um-hm.

-Yeah.

Yeah.

That's all.

That's all.

It seemed to me that Junior's language is pretty good.

He can describe his world, present and past.

But he of course doesn't see it like that.

He is living with an acute sense of loss.

Four months after his stroke,

Barry has none of Junior's admittedly hesitant fluency.

One day, so that Barry's speech therapist Jonathan might know him better,

Linda brings in a DVD of a BBC programme, Homes Under The Hammer,

in which Barry had appeared some years before.

There he is.

-LUCY ALEXANDER:

-The new owners are brothers Barry and Tony.

They like to buy houses that need some TLC and bring them back to life.

Part of the appeal for Barry was the location.

Barry, where is your shirt?

All right, hang on a minute.

Can I just pause?

Barry, You look so different.

You've got dreadlocks.

And no top on.

LAUGHTER

It must have been warm.

Yes, yes.

So I want to know all about you.

Well, I spent 25 years with a big plc.

And I managed to get made redundant four years ago.

And that was an opportunity.

It was an opportunity to do what I'm doing now. Having spent many years

with a big company, working my 12 hours a day, short hair, suit,

-I can now do what I want.

-You've gone mad.

I mean, look at me, I can do what I want, which is great. And I'm delighted I'm doing what I'm doing.

I wish I'd done it ten years earlier.

-You are a landlord?

-I am a landlord, yes.

What type of landlord are you, then?

As my wife would say, I'm a very soft landlord.

I'm too easy-going. I believe, in life, if you're courteous with

people, if you're fair with people, they reciprocate. It goes both ways.

Can I pause it?

I really got a sense of you as quite a bubbly character.

Yeah. Yeah.

And you were really talking lots and lots and lots.

Yes, yes, yes.

I...

That was fun...

So your talking was really clear.

-Yeah?

-Yeah.

-Yeah.

-The other part of you as a landlord,

you said to be courteous to people.

-Yes.

-So there's something about you and your communication that is very

fair, courteous.

Yes. Yes.

-Yes.

-We notice that now,

we still notice that you have that...

..sort of value of courtesy.

Yes, yes, yes.

Even though you have got aphasia.

No.

Thirsty...

-Courtesy.

-Kirsty.

-Mm-hm.

That...

Oh!

Brains have been around for a very, very long time.

Human language, possibly as little as 100,000 or 200,000 years.

So the view is it must have somehow been grafted onto brain regions that

were already there. And if we look at some of those brain regions,

those areas of the brain, we know do other things anyway.

So the frontal part of the brain is to do with...

..decision-making, memory.

For instance, we have a verbal working memory,

which seems to involve certain parts of the brain quite similar to,

very close to, or identical with language areas.

So it's possible, in the extreme view,

that there is no such thing as a purely language part of the brain.

Now I've sliced the brain,

you can see the left side here where the red ink is...

..is the Broca's speech area.

Where a lesion there - a stroke or a tumour, for example -

may cause an expressive aphasia,

where they knew what they wanted to say, they could comprehend language,

but they struggled to get the words out.

You can see further back, where the blue ink is, that's the Wernicke area.

A stroke there, for example, would cause receptive aphasia,

where the sufferer can speak fluently

but often devoid of any meaning.

So I have here slices of a different brain.

You can see...

..in this area here, in the inferior frontal lobe,

at this level there is an old cavity there,

which is an old stroke or cerebral infarct.

So, it's literally a hole, yeah.

So the blood flowing to that part of the brain will have been cut off

and that part of the brain will have died.

So this patient may have had an expressive aphasia during life

where they know what they want to say, but they can't get the words out.

The modern view is that language is instantiated within the brain as a

network of key nodes and that's probably why people can improve with

therapy, because if there was just one region that did one job and

nothing else, if that bit becomes damaged, how can anything take over?

It's not possible, it's gone.

Unless you grow a new bit of brain.

Whilst the brain is changing all the time - it's a dynamic environment -

it doesn't seem like you can grow a new brain any more than you can grow

a new finger. But if we think of language function,

if it's shared across multiple regions with multiple connections and there's damage to that network,

that gives us some hope that therapy could work, because with a bit of

experience-dependent learning we can perhaps retrain the brain

to learn.

Retraining Barry's brain to improve his communication is the business

of the speech and language therapists on the neuro-rehab unit.

Do you know any good strikers, then?

Rooney.

Sometimes Barry's sessions with Jonathan focus on straightforward

conversation, the give and take that underpins all relationships.

-He's a striker?

-Yes.

-All right. Tell me that.

-So...

-Wayne Rooney...

-Is a...

Striker.

Right.

Who does he play for?

Erm... W... No, no, no.

Ma... No, no, no.

However effortful and fractured the conversation,

it's still possible and meaningful.

And Barry's identity, the Barry-ness of Barry,

seems to transcend language.

Manchester United.

United.

-Manchester United.

-Yes.

OK.

-So...

-Oh!

Other sessions with Jonathan can feel more like a linguistic

boot camp, in which Barry's given very specific language drills.

-Jacket.

-With me...

-BOTH:

-Where's my jacket?

When, for example, you ask him to repeat phrases,

are you...

just trying to give him, like, a kind of card he can carry

so he can answer that, he can use that as a useful sentence in social situations,

or is the act of repeating and repeating and repeating

somehow fixing a broken bit of his brain?

I think we know that with the therapy that we're doing,

what we're trying to achieve is generate neuro-plasticity,

so the areas that are functioning in the brain that are still working for

Barry, we're really trying to target and we're really trying to get to

work better and compensate for the area that's been really damaged.

So with exercises like the repetition,

or with exercises like looking at pictures and hearing a sentence

and trying to understand the meaning of that,

we're working towards activating areas around the damaged area.

I...need...some...help.

Yeah?

I...need...some...help.

-Good.

-You're using most of your brain all the time,

you can't afford to have any spare bits doing nothing,

but we've mentioned how the brain is a network and when you've got networks,

it means you've got the potential to re-channel, so it's a simple analogy,

but I think it's a reasonable one. If you think of a metro network like the London Underground and you take

out King's Cross, a major node in that network,

you say, "Well, is the whole thing going to come to a halt?"

Initially, of course, there'll be all sorts of problems,

but over time and with a bit of help, you could bypass.

You're going to have to change here, here and here, whereas you would only have changed once.

And I personally think that happens a lot with language.

I think that's mainly what we're doing in terms of neuro-plasticity.

The brain's plasticity is related to its age.

The younger it is, the more it can adapt to new circumstances.

Junior had youth on his side in his impressive recovery.

That and the fact that, unlike Barry,

he was brought quickly to hospital.

In the world of neurology, they say "time is brain".

For every hour without treatment,

a stroke-affected brain ages by more than three and a half years.

Junior was in hospital within 60 minutes of the onset of his symptoms

and was given medication to dissolve the clot which was also physically

removed from his brain.

What happened on the day you had the stroke?

I know you don't remember it all, but can you kind of take us through what happened?

I was running with my dog, I was coming back home

and...

DOG WHIMPERS

..I was near the Marriott Hotel...

-Shut up.

-..and the stroke happened.

-Shut up.

-And when I got up, I was in hospital...

..with my mum saying that I couldn't speak.

I was...

I was in a bad way.

-Yeah?

-Mmm.

But now, I'm doing OK, but...

-..yeah.

-Just came out of the blue?

-Yeah.

-No warning?

-No.

-No, I don't think so.

I thought you said you had a blackout, you felt dizzy.

Yeah, no, no, no, I felt dizzy.

But I was thinking that...

..I've not eaten.

-Oh, OK.

-Yeah.

-On the day.

-Yeah.

Cos I run in the morning...

..at five, no...

-..five o'clock.

-Was Blanket actually with you when you had the stroke?

-Yeah.

-What did he do?

-He ran home?

-No, no, no, no, he came to my...

He went on my test.

-Chest.

-Chest.

Yeah.

Actually, the ambulance, the lady that treated him,

said Blanket was sitting on his chest and Blanket didn't want anyone to touch him.

So, like, if they wanted to take off his clothes, he was barking.

When you woke up, you came round, can you remember what you were thinking?

Cos you couldn't speak - could you not have thoughts?

Yeah, I had thoughts.

But I'm saying that, "Where is my voice?"

I was baffled, man.

Could you understand what people were saying to you?

Yes, yes, yeah.

But I was thinking, like, "Where is my voice?"

I cannot speak.

Were you able to sort of have kind of conversations in your head?

Were you able to kind of form in your mind what you wanted to say?

Yeah.

Yeah. But it was mad, man.

Because I could think it, but I couldn't say it.

And it was mad.

Do you think a big part of the next challenge is your confidence?

Yeah.

I haven't got any confidence.

-You've lost that.

-Yeah, yeah.

But it's OK.

Did you tend to hide away, or...?

Yeah.

But that's life.

Junior's stroke seemed to haunt him.

His mother said that sometimes he spent whole days in bed,

avoiding the risk of being in situations where his language

might let him down.

Do you make chicken soup?

Yes.

It's quite... It's quite nice, but it's not very difficult.

It's not something that's... It's quite easy to do.

Chicken soup.

-Chicken soup.

-Am I right?

Chicken soup.

For Barry, his world since his stroke is dominated by the here and now,

his days divided between various therapies preparing him for the

ultimate goal of a return to life at home.

There's occupational therapy with Shauna,

his key worker helping him with all aspects of practical daily life.

Well done, yeah, that's OK. Bring your hand in.

Physiotherapy is with Ellen, working to get Barry back on his feet.

-Thank you.

-Can you still breathe?

-No. Yeah.

-Yes.

-Can you still breathe?

-Yes.

-Good.

Left, right, left, right foot, left foot, right foot.

And most weeks, Barry has a session with the unit's

neuropsychologist, Sherilyn.

It's her role to help Barry with his emotional life,

especially his anxiety about returning home.

Who's going to be at home tomorrow?

-I don't know.

-Cos Linda's in Spain, isn't she?

-Yes.

-Do you still have a house key?

Yes.

Wowee!

Home seems to hover over everything.

Sometimes, the prospect appears to excite Barry, but mostly,

it fills him with dread.

And then, if you feel comfortable, we will drive up to here.

He'd made it clear that he was worried that with his

language problems, he couldn't call for help.

But it feels deeper than that.

A series of home visits are planned by Barry's team.

Photos and videos of his house are shown to him to try and reduce his anxiety.

Is this a room that you would sit in a lot?

-I don't know.

-OK.

I don't know.

Are you trying to say to us that you're not sure how you're going to

feel about this?

I don't know. I don't know.

-It's been a while, hasn't it?

-I don't know.

OK, shall we look at another picture, Barry?

-What's this one?

-Bathroom.

Have things changed much?

Yes. Yes.

In the house or with you?

Erm...

-Both.

-Does it still feel like your house?

No.

Yeah.

But we'll do this in small stages until you feel comfortable,

until you get used to it and then until it starts feeling more like

your home.

-You're doing really well.

-No, no.

No, no, these things will be difficult, Barry, they will.

But this is the best way to do it,

rather than just take you there and leave you.

To deal with it, the anxiety.

This is a nice, gradual way for you to get used to seeing it again.

For you to connect again with your home.

Oh.

Barry, I think this plan of going there and experiencing what it feels

like to be there will be really helpful for you.

-Thank you.

-Yeah.

-You're not going to do it on your own.

-Yeah.

Oh...

-Ready for another one?

-Yes.

-Go on, then.

-I'm going to show you the outside of the van first.

Are you ready?

Linda said that you loved this van almost more than her.

Is that true?

Yeah.

She's got a lot to compete with, hasn't she?

That van...

-Happy.

-Happy.

Happy, lucky, seven days a week.

-Seven days a week you'd be in that van.

-Yeah.

No wonder Linda thinks you love it more than she does.

P, Q, R...

Now you're just doing the alphabet.

-Michael's going to bring you up, OK?

-Thank you.

-Oh.

-How are you feeling about this?

I don't know whether...

I... Confused.

-Confused.

-You're feeling confused?

Yes.

-One minute.

-OK.

Can we just drive up quite slowly, Mike?

-Is that OK?

-Just drive past quite slowly. OK. So we're just going to drive slowly past.

-No.

-Yeah.

-No.

-That one there.

-That one there.

That one there.

OK.

Yeah, ready, steady...

It's all right.

OK. So just look around slowly.

Those pictures of your kids up on the mantelpiece.

OK.

Yep. All up there. Lots of pictures, aren't there?

-Uh.

-Three kids. Yeah, lovely.

Are you happy to sit here for a while?

-No, no, no.

-Or do you want to go somewhere else?

-I don't know.

-Remember we said that you might be happy in the kitchen?

Oh.

Oh.

OK.

Look at this one.

Oh.

I don't know whether...

It's a lovely photo, isn't it?

Is it after you got married?

You've got a ring on the finger there.

Yeah. OK.

And then more photos up here.

These look like photos of parents.

-Yeah.

-Yeah.

Is that... Is that you?

-Yes.

-Oh!

Is that you and your brother?

-Yeah.

-Oh, and you had a dog, as well.

Do you want to leave, Barry?

Do you want to leave?

-Yes.

-You want to leave.

-Yes.

-All right.

-Back to the ambulance.

-Thank you.

-OK.

Aphasia is sometimes described as an invisible disability.

It's only when you talk to someone that you might know it's there.

And it's only by talking or trying to talk that a person with aphasia

can make any degree of recovery.

"Use it or lose it,"

I was constantly told by the neurologists and therapists.

Two years after his stroke, Junior's still struggling with this.

He makes occasional visits to the neuro-rehab unit to discuss his

progress with consultant speech and language therapist Jax.

How has your week been?

My week hasn't been too good.

Why?

Because the stroke, man.

I know that it's for the rest of my life, yeah.

-Yeah.

-But it's getting me down a bit.

Who do you talk to about that?

No-one.

So he had his stroke two years ago.

Presented with severe aphasia.

It was difficult to assess him cos his language was so impaired.

Was he speaking at all?

Not at the beginning, he wasn't speaking at all at the beginning.

When I first saw him, he couldn't say anything at all.

But started to make quite a...

..quick recovery in the early stages

of some words, some gestures.

But it's been much slower in the last year.

Is that because of the area of the brain that's been damaged,

or is that because of his approach to the problem that he now faces?

I think it's both. I think it's a psycho-social adjustment to the

level he's at. It's about who you are, how you want to move forward.

You know, some people with a level of language as Junior might do more,

some people might do much less.

But he doesn't go outside his safety zone at the moment.

Your aphasia isn't the thing that's really stopping you doing these

things any more, your aphasia's...

You're good.

Am I good?

-Yeah.

-But you see it, but why doesn't other people see it?

-See what?

-That I'm good.

Do you behave differently, less confident?

-Yeah.

-Yeah.

So in this room, you're quite confident, aren't you?

Yeah. Do you remember...

-Why is that?

-Why do you think?

But I know you?

But when I spoke to...

You don't like being judged.

-Yes.

-You don't like your communication being judged, do you?

Yeah.

-But I was...

-But no-one likes that, being judged on their communication.

No, of course. No, of course they don't.

Of course they don't. With me, you, other people here,

he communicates really quite well,

in the moment, functionally, ably,

and socially, to some degree.

But beyond that,

he doesn't have the free flow of language to communicate his needs,

his thoughts.

-But is that...?

-It's a concern.

But if he's having trouble having thoughts...

-..is that because he can't...?

-He says he doesn't have.

But does he need language to have thoughts?

Well, that's... That's the million-dollar question.

Some patients claim that they just really have a problem with word-finding.

They feel like it's about this gap between having ideas and then

having the words to express them.

They just can't grab the words in order to spit them out to tell them

to you. And in that case,

you can almost think of them as someone who is language-locked-in,

so that inside their head,

everyday language is going on relatively normally.

But when they want to communicate with you and find those language

tokens and spit them out as speech, they can't do it.

I'm not sure how common that happens.

I think there's a bit of a halfway house where if your word-finding

difficulties are bad enough, you will also...

Certain ideas are hard to grasp, as well,

because you just cannot hold certain abstract ideas in your mind if you

haven't got those language tokens...

..as sort of placeholders.

But we can almost judge from behaviour,

so patients with aphasia have not lost knowledge of the world,

they do not have what we call a semantic problem with the world.

They may make what we call semantic errors, so when they want to say dog, they may come out with cat,

but that is a sort of language error.

They know what a dog is, they know what a cat is, they know who you

are, they know who they are, they know everything around them.

So they don't have a problem with understanding the world,

but they have a problem with the language aspects,

the way of understanding the world in a more abstract level.

It seemed to me that Junior's discomfort in the world in a sense

confirms his understanding of the world and the situation that he

finds himself in with his aphasia.

-Hello, Daddy.

-She's videoing you.

My brother-in-law's aphasia was very different.

-Hello.

-Dennis' stroke had been like a sniper attack on his language only,

sparing his mobility,

but leaving him speaking a sort of colourful gibberish,

with all the rise and fall of meaning,

but none of the actual sense,

at least not to anyone else.

Dennis, can you say something for the camera?

Say something, make a speech.

Hello.

UNINTELLIGIBLE WORDS

LAUGHTER

It wasn't ever entirely clear -

did Dennis think he was making sense and we were not?

Did he understand others from their words or from their actions and gestures?

Dennis lived like this for four years until his death.

It must have been isolating, lonely,

despite being at home with those he loved.

Is it nearly lunchtime?

In the weeks after Barry's first home visit,

his mood declines dramatically.

He seems to withdraw from the world,

as if the home visit had been a sort of statement of all that he's lost,

something too much to bear.

Barry, I'm going to do your hair.

Even with his closest friend, Barry seems to shut down.

Barry, do I look funny with glasses?

Yeah.

I'm quite nervous doing your hair, by the way.

It's very tricky, you know.

Very tricky, Barry.

-OK?

-It's hard to know what's going on in Barry's head.

It must be exhausting, forever hunting for that

tip-of-the-tongue thing when you can't quite

get to the word, the name or the place

that you know is in there somewhere. If only.

And I'd heard that one patient with aphasia had described his thoughts

as sticky, as though the inner chitchat of daily thinking

got constantly snagged on its way out into the world.

This is true friendship.

It's been a pleasure.

I'm going to take this off.

How long have you two guys known each other?

Barry, how long have we known each other?

Barry.

How long have you known me?

How long have you known me, Barry?

Ten years?

-22 years.

-22 years, yeah, move forward a bit.

22 years, roughly.

All right.

I'll clean you up, don't worry.

You happy? OK.

OK. Give me two minutes, I'll just finish it.

How are you?

How are you feeling in yourself?

I hear it's been a hard week.

Yeah?

I know that when you come closer to going home, it gets difficult.

OK. But when you go home, you will have more support,

there will be more therapists from the community.

OK? Six months here is a long time.

It's good to get home because you won't need to be in a hospital,

you'll need to be at home with people coming to you,

you know, doing the things you want to do in your house.

OK?

Because here, it's not home.

You know?

But you will still have ongoing...

..rehabilitation, OK?

It doesn't stop when you leave us.

Yeah?

OK.

So when I see Barry on his own in the day room, sitting there,

is his head sort of in conversation, or is it a blank space?

Erm...

-Or we don't know?

-Who can know?

He can't tell us, so everything is...

..an assumption, really.

You know, it's very difficult, you know,

if somebody is not able to write and is not able to speak,

it's very difficult to know exactly what's going on.

We can ask whether he has a word in his head, you know,

but he can't get it out, or he's searching for a word.

It's very difficult to drive that down.

I would imagine

there's a lot of activity there - whether it's with words,

it's difficult to say for him.

But we are aware he is significantly cognitively impaired, as well.

His ability to process things,

the speed with which he kind of works through things and generates

an output has been impacted on.

You would have trouble understanding your place in the world if you lived

on a desert island and had nobody to talk to,

so when you discuss things with people, your ideas change.

That's the whole point.

The other thing I'd say is that language is social.

I mean, Wittgenstein tells us that and I think he's right.

So there's no such thing as a private language, there's no...

There's no utility to a private language, there's no point in it.

I'm not sure I fully understand that.

Is that the notion that language only exists for social interaction?

So we may all have a different, or slightly different, perception of

red, or what we would call red. I mean, this is a classical argument.

How do I know that the red you're seeing is the red I'm seeing?

At some level, we'll never know that, because that's to do with perception.

But as soon as we give it a label, and we call it red, that's when we

start discussing it and it becomes a thing for both of us.

And we know that we've got a shared object or subject that we're talking

about, and that's really what Wittgenstein meant when he said

there's no such thing as a private language.

Sorry, Barry, just giving your leg a bit of a stretch.

So, Barry, if I wanted to buy in south London...

-Yeah.

-..what area would you recommend me to buy?

-Leytonstone.

-What about South London?

-Clapham.

-Clapham?

-Yeah.

-That's expensive.

Not for my budget, I don't think.

-Lewisham.

-Lewisham.

OK. Catford area, around there?

-Maybe.

-Yeah.

£800,000.

-£800,000?

-Yeah.

Yeah, I don't have that kind of money,

I don't think I've got a deposit to put on that.

I'm going to have to move out of London, Barry.

Yes. Yes.

Good. Better.

OK.

-You all right?

-Yes.

So we're going to do some walking on that leg.

-Yes.

-OK. Off we go.

Right, bigger steps. You OK?

-Yes.

-OK. Bigger step on the right.

Big step.

Good. Now, a bit faster.

That's it. Bigger step on that leg.

For both Barry and Junior - for everyone with aphasia -

it seems that being able to be in the world with depleted language

is the most essential, but also the hardest task of all.

What have you been up to?

Now?

No, since I last saw you.

Since I last saw you?

I went to the cinema...

..this weekend.

I saw Fast And Furious 8.

It was good, man.

But this...

Vin Diesel has got to stop acting in Fast And Furious.

He's done it eight times, man.

Yeah.

Yeah, but, Vin Diesel is a good actor.

What have you got coming up, any plans?

I need to get my...

..communication back on point

with speech and language therapists.

Have you found one you're going to work with?

Yeah. Yeah.

Great. How often are you seeing someone?

-Twice a week.

-Great.

Is that going well?

It's going OK.

-It's going OK.

-Good.

I'm cold, man. Yeah, yeah.

-You better go.

-Yeah.

-See you later, man.

-OK.

-All right.

-Thank you for coming here.

Yeah, cool.

-Oh!

-As Barry's stay on the unit approaches its end,

despite his many improvements,

he remains reluctant to accept that he will soon be moving home.

After almost seven months in hospital,

it's understandable that the institution has become the home.

But it feels more than that.

It seems that part of the problem for Barry is not being able to

acknowledge the progress that he is making,

nor perhaps accept the extent of the damage to his brain.

That's what it looks like if you've got a problem in your language area.

Brains just don't get better easily.

As you know. How many months?

Six months. Seven months.

Yes, yes.

And have you got better?

-No.

-No?

-Yes.

-What's got better?

What can you do now?

What can your brain still do?

-Think.

-Think, yeah.

-Talk?

-Talk.

-Walk.

-Walk.

-It's supposed to be walk, it's a funny gesture.

-Walk.

-Sometimes, you get cross because it's not happening

-quick enough.

-Yeah.

Are you OK about that some days?

And then not on other days?

-No.

-No.

-Always want it to be quicker, don't you?

-Yes, yes.

-It's all right.

It's a tough one. So tough, Barry.

How do you...

How do you, you know, keep getting motivated?

-I don't know.

-Because you are so good at that.

Oh, you hate people praising you, don't you?

You don't like it when I praise you. No.

It's not a great thing, is it, a stroke? No.

Five days before his final discharge,

Barry goes on one last home visit.

On Tuesday, then, what time do want to go?

I don't know.

Most people kind of stick around until just after lunch.

-They have some tea and cake with everybody.

-Yeah.

-Do you want to do something like that so that you can say goodbye to everyone?

-Yes. No.

I don't want...

-..fuss.

-You don't want a fuss?

OK. And when you are saying you do not want a fuss,

what do you mean by that, Barry?

Are you talking about when you come home?

I don't know whether...

..it's viable.

-Viable?

-Viable.

-Yes.

-OK.

So you... Are you talking about coming home and managing at home?

-No.

-OK.

Are you talking about needing some help at home?

-Yes.

-Yeah.

Debs and the community team, they are there to help you get stronger.

So rehab isn't over.

You don't need to stay in with us, Barry.

You need to come home now.

Yeah?

On the eve of Barry's last day in the unit,

he and Linda have a final meeting with a neuropsychologist, Hannah.

How do you feel about your relationships at the moment

with Linda or with your children?

In terms of being able to speak with them?

How do you feel you get on with Linda when you can't speak so clearly?

Hit and miss. And can I ask Linda the same question?

Yes.

How is it for you in terms of your relationship with Barry since he has

not been able to speak so clearly?

Sad.

One of the things which we know following a stroke is that people

have lots of losses.

-Yes.

-And one of the most significant losses that can happen is

-in terms of aphasia...

-Yes.

..and not being able to speak so clearly or understand easily.

-Yes, yes.

-And it then leads to a whole element of

what your role is and what other people's role is who you know

and the difficulties that can follow

in the renegotiation of relationships.

Is that something that you have experienced, Linda?

Mm.

Hassle, hassle, hassle.

-Hassle.

-Yeah.

Is that hassle for you, or do you feel that you are a hassle?

I don't know.

I don't know.

Hassle, hassle, hassle.

Hassle for who?

-You.

-Me?

-Me, you.

-For you, as well?

-Yes.

-And for me?

-Yes.

What you used to say all the time was, "It is what it is."

-Yeah.

-When things happened.

-Yeah.

-Well, it is what it is.

-Yes.

-So, it is what it is, you have had a stroke,

and now you need to come home tomorrow and continue with your

rehabilitation at home.

Yes.

# Regrets, I've had a few

# But then again...

# Too few to mention... #

I don't know.

Six months. Six months he has been in this bed.

Six long months.

# I've planned each charted course

# Each careful step... #

Are you feeling ready for this?

Yes.

# Much more than this...

# I did it my way. #

OK, so, which hand do you want to shake with? That hand, or that hand?

I don't know.

Both hands.

Really good.

Yeah.

-Thank you, thank you, thank you.

-Thank you.

-Thank you.

You are very welcome.

-Yeah, yes. Yeah.

-I've enjoyed working with you.

-Thank you, thank you, thank you.

-You're very welcome.

Oh, well done.

It's been a pleasure.

Bye-bye.

Bye-bye.

-No tears.

-Bye, Barry.

I'm going to cry.

All the very best.

Do you know what? We are going to turn around.

Are you going down? Yeah, we're going down.

Oh, look, we've got the farewell party.

Ellen and Shauna.

Our girls, our best girls.

-Bye. Bye.

-Bye.

Bye. Bye.

# And now, as tears subside

# I find it all so amusing

# To think I did all that

# And may I say, not in a shy way

# Oh, no, oh, no, not me

# I did it my way... #