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A film about dementia, disconnection and seeing the world differently.

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.Ìý BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE ³ÉÈË¿ìÊÖ CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

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IN TOUCH – The newest star of Doctor Who

TX:Ìý 27.11.2018Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌý PETER WHITE

PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý LEE KUMUTAT

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White

Good evening.Ìý Tonight, it sounds like a dream role in a legendary TV show.

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Clip – Doctor Who

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White

We meet the young visually impaired actor who will be watched by millions next week.

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But first, an eye condition which, to my knowledge, we’ve never featured on In Touch before.Ìý Doug Banks began to experience problems with his eyesight around four years ago.Ìý Initially his symptoms were put down to overwork and a stressful job, both by Doug and his GP, but when his difficulties persisted Doug took things into his own hands and began to do his own research.Ìý Having ruled out direct eyesight problems he went back to his GP who ordered a full health check, including an MRI scan.Ìý What they found was surprising and devastating.Ìý It turns out that Doug has a rare form of Alzheimer’s disease known as PCA or posterior cortical atrophy.

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Well I’ve been talking to Doug about PCA’s effect on him and finding out more about the disease generally from David Reynolds, from Alzheimer’s Research UK.Ìý Doug first.

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Banks

My eyesight is fine.Ìý The main problem for me is that what I see cannot be interpreted by my brain, my brain can’t work out what it is I’m looking at, what I do with it, where is it.Ìý There are some weird things about it as well, I can read very small print but I can’t read a newspaper.Ìý I’ve looked at signs six feet high and can’t read them because my brain can’t process it.Ìý Okay.Ìý Another one is playing golf – if I try and play golf, I can’t hit the ball.Ìý But I can play badminton because the shuttle cock’s moving and that’s not a problem.Ìý And that’s weird, it’s almost counterintuitive.

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Reynolds

What’s happening to Doug’s brain is similar to what happens to people who develop kind of ordinary symptoms of Alzheimer’s disease, parts of his brain are degenerating and his brain cells are dying off and that’s producing the symptoms he has.Ìý The key difference is, in Doug’s case, in posterior cortical atrophy, it’s the back of the brain that has these problems and that’s the bit of the brain that processes the visual information coming from your eyes.

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White

And one of the first symptoms of this, as you say, is vision loss, not memory loss, why does that happen?

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Reynolds

So, it’s all to do with which bit of the brain is affected by the disease.Ìý Because it’s the back of the brain that processes the information coming from your eyes, not just the picture that your eyes collect but also putting it into context of what the different objects of scene is about and if you’re trying to do something like say, I don’t know, pick up a cup of coffee using that information to guide your hand to the cup of coffee.Ìý And because it’s that bit of the brain that does that kind of processing that leads to the symptoms that people like Doug can struggle with.

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White

So, you didn’t have any experiences of memory loss?

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Banks

No and this is why it’s different, some people don’t get that sometimes because it’s less about memory and it’s more about the visual.Ìý Of course, in the latter stages it’s meant to become similar to classic Alzheimer’s with memory loss and not being able to recognise people and things like that.Ìý There’s one or two other aspects of it where it affects your ability to read and write – I can’t read and write so well now.Ìý I can’t do calculations, I can’t handle money very well because I can’t see what I’m dealing with there.

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White

Which obviously all these things relate to work, you were doing a fairly high-powered job and one of your concerns is that you want to be able to go on doing something, something useful.

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Banks

Yeah, I mean I’ve been doing – I’ve worked in the IT business for getting on for 30 years and I know I can’t depend so much on the fact that I can get things done as quick or I might miss things out or I’ve got to get someone to check things.Ìý Although I’ve still got the same knowledge, the same experience, I can’t get to it as quickly.

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Reynolds

Many of the people who have PCA are relatively young, kind of 50 to 65 is a typical age of onset.Ìý So, a good 10 or 15 years earlier than say a typical Alzheimer’s patient.Ìý And of course, the symptoms are very different.Ìý So, often someone might go to have their eyes tested, for example, and find actually their vision is fine but that doesn’t explain the symptoms that they are having.

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White

Now Doug is desperate to work.Ìý Can people go on working in the early stages of this disease?

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Reynolds

It really depends on Doug’s symptoms and what kind of work he does, also whether he can get support from home and the workplace to enable him to keep working.Ìý So, it’s a difficult question to answer.Ìý Certainly, we would encourage people to go on living as normal a life as possible and try and work out ways you can compensate for challenges with vision or other aspects of the disease but it is a very individual thing.

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White

And it must be very frustrating if most things still seem to be working fairly normally, not to be able to do some of the things that you’ve been trained to do.

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Reynolds

Absolutely.Ìý As with all of these diseases that affect your brain it has an enormous impact on the person themselves and often on their family and friends as well.

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White

You’ve had a diagnosis which has all kinds of implications, including a shortening of life, you’re in your 50s, why is it so important to you that you work?

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Banks

Why work?Ìý Well, obviously, as a professional person work is a big part of your life.Ìý The credit crunch didn’t help matters, shall we say but also the fact that people say to me well why don’t you just finish work and go and just live everyday and experience things.Ìý Fine, but you need money for that and because I’ve got no income now, I’ve had no income at all since last November, it’s not something you can simply cope with – so to find ways of carrying on, shall we say.

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White

Just explain how Doug’s disease might progress, given that the vision loss or the vision difficulty of interpretation happens first.

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Reynolds

With these kinds of diseases that are a neurodegenerative disease, so your neurons, your brain cells, are dying off, it starts in a particular part of the brain, in this case the bit that processes visual information but it will spread to other areas.Ìý So, as posterior cortical atrophy progresses it tends to lead on to symptoms with problems with remembering, with thinking, with being able to recognise objects or people.Ìý And that will get worse and worse over time as the disease progresses.

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White

And can you give us any kind of timescale on this?

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Reynolds

So, there’s an awful lot of variation between different patients.Ìý It will typically be over a number of years, five to 10 years, but some patients will progress much more quickly, some much more slowly.Ìý And unfortunately, as scientists we haven’t really got to the bottom of why that is or how to slow it down.

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White

This is very unusual Doug, what would help you, what are you looking for really?

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Banks

Well what I’m thinking of, I’m slowly coming to terms with the fact that I’m not going to get back to my job and so what – I’m going to do something else now and I’m thinking well what can I do, forget what I can’t do, what can I do.Ìý And whilst I’m still fit and well and I can get out and about I’d like to do something that’s worthwhile, in terms of maybe something around dementia or Alzheimer’s or whatever, but I need to be in a position where I can earn money and pay – support my wife and so on.Ìý And obviously I’m thinking ahead, planning ahead, to make sure she’s safe, you know, in the long term.

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White

And do you have a prognosis for that and how it might continue to develop?

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Banks

Well the prognosis is that once you’re diagnosed, I was diagnosed in July 2016, your life expectancy is within 10 years.Ìý

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White

And as far as the visual aspect of it?

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Banks

On the visual aspect of it, it’s basically – it’s progressing, it’s progressing aggressively and each day is a challenge, I guess, yeah.Ìý I’ve got several pairs of glasses at home, again they don’t really help much at home and the prospect is – I had a neurologist’s appointment in October and he suggested that what it actually turns out to be is like looking through a broken mirror, a shattered broken mirror that you can’t, you know, you can still see colours and shapes but you can’t interpret any of it.

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White

That was Doug Banks and before Doug you heard David Reynolds of Alzheimer’s Research UK.

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If you want to know more about Doug’s condition and the support available, you’ll find links to the charity and to a video giving more information on our website.

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Finding work is also on the mind of Jenny Hut.

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Hut

Thank you for covering the issue of those losing their sight who aren’t children or older people.Ìý I was recently diagnosed with Inherited Retinal Degeneration when I was in my early 40s.Ìý It’s been frustrating trying to find any services locally or nationally to meet my needs as a parent and someone who wishes to find employment.Ìý Services generally offered to me are during the working day, therefore making me feel as though it’s expected that I will never get a job.Ìý So far, I’ve been offered numerous craft groups, coffee mornings or trips out – none of which is relevant.Ìý How will I remain an active useful member of society, not side-lined and just able to meet up with people socially?

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White

Well Ellie Wallwork could be forgiven if finding work doesn’t seem too much of a problem for her at the moment.Ìý Every actor longs for that big break and for Ellie it could have hardly have come much bigger or much earlier.Ìý She’s 18 and next Sunday she’ll be playing a leading role on one of TV’s most enduring series.Ìý Doctor Who’s already broken new ground with this series with the first female doctor and next Sunday Ellie will be playing the lead guest part.Ìý And she joins us from our Hereford studio.

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So, Ellie, first of all, very exciting and congratulations…

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Wallwork

Thank you.

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White

But tell us as much as you can about your lead role without spoiling the plot.

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Wallwork

Her name’s Hanne, she’s a young teenager and she’s completely or near on completely blind.Ìý And you first see her really – she’s sort of been in this cottage for a while and there is this monster lurking in the woods and lots of sort of terrifying sounds and she’s a scared character, the first time you see her she’s frightened.Ìý And then lots of interesting things happen to her.

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White

But they haven’t actually travelled in time have they for this, I think you’re in the present aren’t you?

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Wallwork

No, yes, yes, the present, yeah.

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White

Which is unusual.

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Wallwork

Yeah.

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White

So, how did you land this part Ellie?

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Wallwork

So, I did a film when I was 11 and from that film I got an agent and over the years she’s been getting me some roles and some auditions and I think it was September last year she put me up for an audition.Ìý And I didn’t actually know what it was at first, I had no idea, it was just a major ³ÉÈË¿ìÊÖ drama, lots of secrecy, can’t tell anybody.Ìý And then I got the audition and it was for Doctor Who and I went for it in London and I got the part, which is wow.

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White

I gather your dad is a big Doctor Who fan.

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Wallwork

Yes, massive fan, he loves it.

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White

So, what’s his reaction to this?

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Wallwork

The first time, when I told him that I was going for an audition, we were actually in the car and he came back from – I think it was like getting some petrol or something – and he didn’t speak for about five minutes because he was so shocked, he was like what!! Because it’s his childhood show really, he loves it, he loves the show.

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White

Dream come true for him.Ìý You mentioned earlier experience, there was a film called Imagine, wasn’t there, that we featured on In Touch.

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Wallwork

Yes, that’s right.

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White

Is that what kind of got you really hooked on this?

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Wallwork

Yes, because I remember doing it and feeling really, really happy and feeling really at home and it made me want to do it even more.Ìý And this – the Doctor Who sort of part underlined that.Ìý So, it’s really made me want to pursue it more.

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White

So, is that kind of part of the Ellie Wallwork life plan now – acting?Ìý Because you’ve got various other strings to your bow haven’t you.

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Wallwork

Yeah, I don’t really know what I’m going to do, I kind of want to keep my options open because I don’t want to commit myself to a career path right now.Ìý But I’d definitely love to pursue acting in the future.

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White

Tell us a bit more about the filming – I mean what was that like, on such a set, on such an iconic show, ain’t the word but if ever it applies to anything it apples to this?

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Wallwork

Yes.Ìý It was amazing.Ìý I always felt like I belonged, I always felt included.Ìý They made a lot of effort to make me feel at home really.Ìý They always helped me in terms of like guiding me around the set and we always blocked out scenes beforehand.Ìý And filming with the cast was fantastic, they’re all so funny and I got on with them so well.Ìý And I really, really felt happy there.

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White

Did you have to do any stunts?

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Wallwork

Well actually, I had a stunt double, which is really hilarious to say but I did do a couple…

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White

Was she blind?

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Wallwork

No, sadly not.Ìý But yeah, I did a couple of stunts but not anything too serious because I wouldn’t have been able to do it, I don’t think.

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White

But it absolutely lived up to your expectations obviously.

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Wallwork

Definitely, I mean I don’t really know what expectations I had, I mean it’s Doctor Who, what can you think would happen?

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White

Let’s just talk a bit more about you because when we first met you were at mainstream school and you’re now at a specialist college in Hereford.Ìý How is that different and why have you gone that route?

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Wallwork

So, my independence wasn’t great when I was in mainstream because I pretty much gave everything up for my A Levels and GCSEs.Ìý And so, I wanted to take a gap year anyway before I went to uni, because that’s what I plan to do next year and I wanted to get some support for independence and IT and living skills and that kind of thing and I decided on Hereford because it seemed like a good step, sort of not quite sixth form but not also uni, so it was a good transition.

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White

People react in different ways, sometimes people who’ve always been at mainstream go into a college that’s just for blind people, feels uncomfortable, what about you?

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Wallwork

I had a lot of adjusting to do, I think, I love the place, honestly, I think it’s great and I think it’s done a lot for me.Ìý There’s certainly, I mean it’s not been easy because I wouldn’t have expected it to have been because I’ve spent all my life in mainstream but I think I’ve adjusted really well and I’m really enjoying myself now.

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White

So, I have to ask you – how have your new fellow students reacted to your stardom?

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Wallwork

I don’t really know, people have been approaching me and been like – oh is it true you’re in Doctor Who – and I haven’t really known how to react, I’ve just sort of gone…

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White

Have they a bit annoyed you – you know when people come to somewhere new it’s bad enough, you have to fit in and then it turns out that you’re this megastar.

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Wallwork

Lots of people wondered – I mean I’m not really a megastar but lots of people have wondered why I didn’t say and I was well I couldn’t because if it had got out then it wouldn’t have been great and I needed to keep it a secret which was so difficult.

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White

You said some things had been difficult, difficult to adjust to, can you give us examples?

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Wallwork

Honestly, it’s mostly living away from home.Ìý Like the social environment has been completely fine because I don’t know I fit in really, really well but it’s mostly getting used to just doing stuff on my own, it sounds really weird like, I sort of – when I first put my washing on myself, because I didn’t know how to do that before because my washing machine at home was a touchscreen, it was – I don’t know it felt like I was achieving something.

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White

So, these were things that perhaps you did get a bit spoilt about at home which you’re now having to do.

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Wallwork

Exactly and I’m like far from being like oh I have to do this, I’m actually revelling in the independence.Ìý I’ve always wanted to be independent and this is the closest I’ve ever got and that’s made me happy.Ìý Like even just simple things like cooking or just doing things I wouldn’t have ordinarily done at home because I was focused on studying and stuff like that, it’s felt like a victory really.

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White

Ellie Wallwork, yet another victory then for you, thanks so much for joining us…

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Wallwork

Thank you.

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White

…and congratulations.

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Wallwork

Thank you.

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White

Doctor Who, starring Ellie, is on ³ÉÈË¿ìÊÖ 1, that’s Sunday 2nd December at 6.30 pm.Ìý Ellie’s next step may well be university where she’ll be entitled, like other visually impaired students, to Disabled Students Allowance.Ìý Now that’s meant to help with the extra costs of your disability when you’re studying, could include things like access technology, transcription of coursework in an accessible form, help with getting around the campus and taking notes in lectures.Ìý But a number of organisations, including the Pocklington Trust, have written to the Department for Education saying the allowance isn’t working as it should, especially when it comes to finding the right support workers for students.

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Tara Chattaway, explained what they wanted from the government.

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Chattaway

The technical guidance is very specific on the type of support that a student can receive.Ìý If somebody has an assessment and they need support that’s not on that list then they’re not able to receive it.Ìý And it’s kind of very generic actually, it doesn’t really match the needs of some of the students.Ìý And the second part of it, is that it has a very, very strict list on the type of qualifications that those people providing support should have and it doesn’t allow for experience.Ìý So, they’re told, okay, you should have however many hours a week but then there’s not the right numbers of people out there with that specific qualification to be able to provide that support.Ìý So, I’ve heard from a number of students at the moment in their first year of university who’ve gone their first semester with no support because they can’t find the right people to support them.

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White

Tara Chattaway.Ìý Well the briefing that they sent has been acknowledged by the Department for Education but they’re still awaiting a full response.Ìý But in a programme dedicated to students next week that’s just one of the things that we’re going to be discussing with a panel of students.

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Doctor Who sound effects

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You can call our actionline with your thoughts on 0800 044 044, email intouch@bbc.co.uk or click on the contact us link on our webpage.Ìý From me, Peter White, producer Lee Kumutat and the very latest star of Doctor Who, goodbye.

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Wallwork

Goodbye.

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Doctor Who sound effects