Parkinson's: The Funny Side Inside Out South

My name's Paul Mayhew-Archer.

You don't know me,

but I may have been in your living room at Christmas time.

Not because I'm a thief, or Santa, but because of this.

-Enter if you're sexy and love Jesus!

-GIGGLING

Evening.

I'm a comedy scriptwriter who's been lucky enough to work with

some pretty funny people.

OK, what does it mean when that red light's on?

You're a prostitute?

And I've always looked on my own life as a bit of a sitcom.

I think, actually, this was the corner where I was propositioned.

And I didn't like to let her down too seriously,

so I just said, "Not today, thank you."

If you don't help me now, I'm afraid I'm going to have to tell them

you are actually Noel Edmonds.

I've spent my life trying to give people a laugh,

so when I was told, five years ago,

that I've got Parkinson's disease...

Ooh, maybe she can cure it?

Yeah, it's gone, you see. Isn't that amazing?

..I decided to focus on the funny side.

-Oh, damn you!

-This is my daily exercise.

'I'm even writing a rom-com for the BBC about Parkinson's,

'which is proof that my marbles have gone completely AWOL.

'And the funniest bit is, it's actually been commissioned,

'so I think their marbles have gone AWOL as well.'

Really weird!

Yes, thank you.

When I saw a neurologist and I was diagnosed, he said,

"You should expect five good years."

And I remember thinking, "Well, actually, you know, that's pretty good.

"Because up until now, I've had the odd good year, but never five!"

You know, wow! God, that's fantastic!

But those five good years are coming to an end

and I want to find out what might be next.

Five bad years?

Five not-so-bad years?

Five weeks?

As yet, there is no cure, so I want to find out what I might be in for,

who's doing what in the search for treatment...

Aaaaaaah!

..and above all, see when I'm entitled to free parking.

When I was diagnosed, I sort of walked up and down a little bit

for the professor and then he prodded me in the front and

then prodded me in the back and then he said, "Yeah, that's Parkinson's."

And my wife said, "How can you tell, just from that?"

And he said, "Well, no, there are other signs,

"like the fact that I know your writing is very small

"and also your facial muscles have quite frozen.

"For instance, you seem to be finding it quite hard to smile."

I said, "Well, that could be because you've told me I've got Parkinson's."

So, let's not start with hospital visits and neurologists.

Let's start with the most important thing of all.

I'm heading towards the most exciting aisle in any supermarket.

Which is of course the promised land.

Could you hold this for me, please?

Because I'm going in!

The vicar of Dibley was of course famous for her love of chocolate.

A bit of science here.

Parkinson's occurs when your brain produces less and less dopamine,

but there's a theory that chocolate encourages the brain to

produce dopamine, so as I see it, chocolate is a vital medicine

in the battle against Parkinson's and should really be on prescription.

A lot of people with Parkinson's, we, um...

From the drugs, usually,

we have certain obsessions.

I'm going to try these, I haven't tried them before.

It can be sexual, it can be gambling,

people have been known to lose thousands.

In my case, it's chocolate.

I just love chocolate.

If I can find a fantastic sort of bargain on chocolate,

that's marvellous and then of course I have to smuggle them

into the house, because my wife doesn't, you know, approve.

The trouble is, I could eat this in a day.

Actually, I could eat this in one sitting.

I COULD eat this before I even get home from the shop. Lovely.

The two of us are going to have the most fantastic evening together.

-You provide the booze and I'll provide chocolate for the evening.

-Fair enough!

That is a good deal, isn't it?

One person in every 500 in the UK has Parkinson's.

That's 127,000 of us.

Which means a lot of people fumbling for change at the checkout.

Thank you very much. This is where it gets difficult.

Trying to just get the money out.

-Thank you very much indeed. Sorry to keep you.

-That's OK.

What we talk about is being "off" and being "on".

And we're on when we're sort of alert and fine,

because the medication is having its maximum impact.

And then we're off when it's starting to lose...

Wear off, and we need some more.

But there will come a time, I'm sure, soon, when the illness

progresses a bit and I'll need more to keep me going,

because there'll be longer periods when I'm "off", as it were.

As usual, I'm running a little bit late.

I never allow enough time. I think I'm in denial, you know.

Fuelled by chocolate, I make a mad dash to the centre of Oxford for

a class run by the English National Ballet for people with Parkinson's.

By this time, you're probably thinking,

"I think he's faking it, I don't think he's got Parkinson's at all,

"the way he seems to be running." Maybe I haven't!

So you noticed this arm doesn't swing.

I can make it swing.

This used to happen naturally,

um, in the olden days, when the dopamine cells were producing dopamine,

so I have to sort of remember to do it.

CHANTING: Now-it-beg-ins!

GROANING

-Sorry, sorry.

-Again!

-Sorry, very sorry!

Sorry!

Just find a chair.

When you think of ballet, you probably think of Darcey Bussell and

Rudolf Nureyev, not a bunch of people with a form of brain damage

that causes a progressive degeneration of the entire nervous system.

But it turns out we might not be great at ballet,

but ballet is certainly great for us.

In!

What does it do for you, Jim?

It makes me walk upright and in a more balanced way.

And can I just check,

-do you leave cups of coffee lying around the house, Jim?

-I do.

And they get cold. I quite like cold coffee though.

I do, too!

I used to like coffee hot, but now,

I don't seem to get to it until it's been lying around for about an hour.

I've got really used to cold coffee.

Do you find that you drink cups of cold coffee and leave them

lying around the house?

Yes. Yes, I do.

Aha! Have we discovered a symptom?

-Arabesque! Reach up!

-'Probably not.'

Anyway, Sally was 59 when she was diagnosed.

She first noticed a tremor in her hand and tried to ignore it.

Then her voice got weaker and she became anxious in crowds.

So what do you get out of the dance classes?

When I go out, I feel I've just had an hour-and-a-half without Parkinson's.

I forgotten I've got Parkinson's.

PIANO MUSIC PLAYS

Now, what goes on in the middle is just remarkable.

-We do these lovely exercises, you and I giggle a lot...

-Get told off again.

-Get told off again!

But it's just relaxation with a lot of exercise.

Which sounds kind of wrong, but...it is.

Chris and Christine have been married for 51 years.

Chris is 71 and he was diagnosed nine years ago.

-And you get hallucinations, Chris, do you, from time to time?

-Yes.

At the moment, he's got a second bedroom that's through the wall,

in the bedroom.

He says he goes into it, but I'm not sure how.

-You see children, don't you?

-Yes.

-Two little girls?

-Yes.

It's amazing.

But Chris knows that it's not actually real, even though he sees it.

-Which is...strange.

-That's extraordinary.

So he knows it's a hallucination?

You see these things, but you know they're not real, is that right?

-Oh, yeah, yeah.

-That they don't frighten you?

-No, no.

-No.

You always strike me as incredibly cheerful about it all.

Yes... Not always. There are times when it's quite hard.

-But we get on and make the best of it, really, don't we?

-We do.

-And we laugh about your hallucinations, don't we?

-Yeah.

-Because they are quite funny sometimes!

-Quite strange ones.

Yes!

Anne Clark used to be a geography teacher

who travelled the world every chance she got, until very recently.

Do you find the dance itself helps?

Yes, I think it does.

How long have you had the Parkinson's?

Oh, ever since 1998.

-17 years.

-Mmm.

-Good Lord.

That's extraordinary.

I find the people in this group absolutely amazing.

Partly the fact that the people with Parkinson's remain so

high-spirited and joyous and positive about whatever the future might bring

and also the love and devotion that they get from their partners.

It just is really an eye-opener

and I find it very moving, even though I've got Parkinson's.

So I'm just full of admiration for them.

-Have you had anything to eat?

-Um, no, I haven't really.

'My wife Julie, who'll you notice gives me bananas, not chocolate,

'was one of the first people to spot that the way I moved was changing.

'It's a bit like sometimes I'm in slow motion.'

Can I have a bit of chocolate?

'Especially peeling bananas.

'Gosh, this really is TV gold.'

Quite nice.

We look back and realise how long he'd had it before he was

diagnosed, just over four... Well, four-and-a-half years ago.

And it makes sense of things.

Now, one of the things about the pills, is that they're quite small.

And for someone who has not very much dexterity in their fingers,

it can be a bit tricky.

But, anyway, there are two of them, and I take two of these.

Often, I forget whether I've taken two lots or one lot.

'Cold coffee and tablets are all very well at the moment,

'but what of the future?'

You could finish this one!

I don't worry about the future.

Oh, gosh! Oh, right. That's comforting.

-TEARFULLY:

-Sorry. I never think about that.

We prefer not to know in many ways.

Of course, one of the things I've learnt is that

I have to be very careful going upstairs,

even more so than going downstairs, because if I lose my balance

and I'm a bit wobbly, then I'm going to fall backwards rather than

forwards and then I don't actually know where I'm going to fall, so...

There we go, I'm up.

So, this is me now, coming into my little den up on the second floor.

This is where I write.

One thing I'll show you, one of the first things I noticed

that indicated that I actually had a problem, was my writing.

Because my handwriting's always been pretty bad, but if I start there...

There, you see.

If you notice, my handwriting gets smaller...

..and... HE LAUGHS

..so by the end, it's just...

I mean, can you read that? I mean, even I can't read that.

As the disease progresses, what may happen to me

is that I lose other abilities.

I might find it difficult to swallow,

I might have trouble with my... My voice might get weaker.

I'm already losing my sense of smell, I'm aware of.

There are various things that can happen.

But, on the other hand, they might not.

I know so little, but Oxford's full of people who might know a bit more.

Neuroscientist Dr Farhan Begg is one of them.

To start with, I'm going to read a list of words that

I'd like you to remember now and later on.

Listen carefully.

When I'm through, I want you to tell me as many words as you can remember.

It doesn't matter what order you say them.

Face, velvet, church, daisy, red.

Face, velvet, church, daisy, red.

Fantastic.

Can I just say, this is absolutely terrifying for me,

because I have this terrible fear that

if I don't remember all the words, I won't be going home.

I'll be going to A home, but it won't necessarily be my own home.

Now, repeating the words, faith, velvet, church, daisy...

OK, Yeah.

What I'm going to do is...

'Of course, the Holy Grail is early diagnosis

'and it could lie in a phone app.'

Now, when you're ready, I want you to say, "Aaaaaah" into the phone.

Aaaaaah.

'What can you tell from that?'

'We've managed to compare the differences between people

'with Parkinson's and people without Parkinson's.'

-'From an "Aaaaaah"?

-From an "Aaaaaah".'

One of the ten main things that we look at

looks to see if there's a breakdown in the voice with people

with Parkinson's that we don't get with people without Parkinson's.

So, just think, my "Aaaaaah" might contribute to ultimately an,

"Ah! We've worked out the answer of how we can find out about Parkinson's."

Remember those five words?

I hope you do, because you'll be tested on them later.

Anyway, words are pretty important to me.

I'm at a script meeting with my producers, Hilary Bevan Jones and Ellie Wood.

The film's called While We Still Can and I'm writing it

while I still can.

It's about my ballet class

and Hilary has a very personal reason for getting involved.

Dad had Parkinson's for, oh, crumbs, over 20 years.

And what was so extraordinary was he didn't actually get tremors,

but he got very stiff and his muscles on his face just froze up.

But the one thing that he could still do was play the piano,

right to the end.

And we got him to the piano and he sat there and he could play.

-And it was beautiful.

-And he had it for 20 years?

-20 years.

-Which means that he probably had it for 23 or 24 years?

-Probably.

Because normally you have it for four years.

-Yes. He died when he was just over 80... 82.

-Gosh.

Well, this is giving me lots of hope! LAUGHTER

This is fantastic! Hooray!

Hillary's dad lived for music. I live for laughs.

Sometimes, you think, "Ooh, that's very funny." And then it's not.

And sometimes you think, "Hmm, yeah, that might work."

If any person here knows of any just cause or impediment why these

two should not be joined together in holy matrimony, let them speak now.

There was a moment in a Dibley episode where it was the

Alice and Hugo wedding and I had this woman coming in

and interrupting the service.

-The groom is already married.

-SHOCKED GASPING

Oh. Sorry!

Wrong church.

And I was so excited when I wrote that joke,

that I actually sort of danced up and down.

It's sort of like discovering penicillin for me.

I know that sounds absolutely ridiculous,

but truthfully, that's what it was like.

HE LAUGHS

Slowy curl up through the spine, so gradually starting...

So, that was my penicillin moment.

Unfortunately, I don't have a cure for Parkinson's.

Getting taller and taller and taller.

Which is a pity, really, considering what some people have to put up with.

I get an assortment of types of nightmare that I've

classified over the years and one is screaming nightmares.

I've been on holiday once in the last two years, for a few days.

I had to take a friend with me, because you can't

scream down a whole hotel full of guests unknown to you.

Um, and you can't start dismantling the furniture in a hotel room,

because I do that at home.

I tried really hard to break in through the side of a wardrobe,

thinking it was a garage door and I was imprisoned in the garage.

It's not easy to live with.

I live on my own, I have to sleep with the bedroom windows shut

so that I don't wake the whole village, if I scream.

Blimey, Josephine.

And this is Anne, who also lives alone.

Well, at the beginning, it didn't seem all that bad,

though one realised it could get worse in the future.

But I was assured by various people that nobody died of Parkinson's.

RADIO: 'But if you are a stressed middle-aged woman...'

I find it difficult now to read,

which is strange, because I used to read about three books at once.

Now I mainly seem to be looking after myself, pills and things

like that and I'm finding it difficult to walk.

And to balance.

I can get up still,

I think without anybody else there and without anything to hold on to.

But I'm not sure how long that'll last for.

I haven't found it all that difficult, having Parkinson's.

And I'm grateful every time I think of the people

stuck in tunnels, in earthquakes...

..and with diseases like motor neurone disease and all that sort of thing.

I'm much luckier than they are.

Come on, everybody, shake a claw.

ALL: Let's hear you bellow, let's hear you roar!

'John Foster is a children's author

'and enjoys reading his poems in schools.

'He's had Parkinson's for over ten years and he has a serious tremor,

'but you wouldn't know it, because,

'and this is just amazing, he's got a thing in his brain which has

'transformed his life.'

Water splashed over the side...

-John, how are you?

-Hello, James. Good to see you.

-Come in, come in.

'I've come to the John Radcliffe Hospital in Oxford,

'where the deep brain stimulation device thing was put in.'

So, how did you know you'd got Parkinson's and at what stage

did it become important for you to have this thing put in your head?

I developed a slight tremor about ten years ago.

After four or five years, I was offered deep brain stimulation

which I was told would control the tremor.

It wouldn't take the tremor away, but it controls it.

And it's been life-changing. It gave me all my life back.

So, when you put this thing in his brain,

I mean, what's actually happening then?

When we put the wire in, it's a bit like

having a pacemaker but the wires are going in the brain

through small holes in the skull rather than in the heart, obviously.

And the electricity that is being delivered into your brain

is going to an area called the subthalamic nucleus,

which is one of the places we put wires for Parkinson's quite often

and it can really help with those kinds of symptoms.

The thing I'm thinking about is there's a Black & Decker,

and there's a bloke sort of... HE IMITATES DRILL

You know, and like a masonry drill.

Well, no, actually, the one we use is a hand drill.

And the, the...

PAUL HYSTERICALLY LAUGHS

'Oh, do calm down, Paul.'

Well, I am incredibly excited in a sort of, well,

I hope not in a ghoulish way, but also incredibly privileged to

actually see what happens when John switches this thing on.

And then obviously James is going to switch it back on again,

-because you won't be physically able to switch it on again.

-No.

The tremor, it will be so...er...marked

that I won't be able to do it.

OK. Over to, to you, John.

BEEP

-It's quite a violent tremor as you can see.

-Oh, my God.

I think that's enough. We'll put it back on. Stretch your arm out.

And you can see...

-..almost straight away.

-Oh!

That is...absolutely astonishing.

It's fantastic.

And when it's turned off and you're shaking that,

how does it actually feel?

It's quite distressing.

Because I've become so used to not having the tremor that

when it comes back as markedly as it does, it's quite distressing.

-Is it painful or is it...?

-No. It's just very annoying!

THEY LAUGH

Now, I'm laughing, but actually I find it incredibly moving,

because that could be me further down the line

and it's just incredibly useful and helpful to know that I could be

given this same sort of treatment by these people like James.

It's just... It's amazing.

'Controlling John's tremor is pretty miraculous,

'but what we'd really like is a cure.

'And I'm pinning a lot of hope on Oxford's Parkinson's Disease Centre.

'In this tiny room, they've made a massive discovery.

'Ground-breaking research, funded by Parkinson's UK, is going

'on here turning skin cells taken from people with Parkinson's into

'stem cells and then into brain cells to work out what's going wrong.'

You can see that we have the neurons, the brain cells,

growing in the dish

and then we can identify those which are the dopamine neurons.

They're the ones in green.

They're the ones that are not working properly.

In Parkinson's patients, eventually dying off, leading to the symptoms.

Right. So, what have you found out recently about...?

So, we are able to study these neurons, the dopamine neurons, the ones in green,

and recently we've been able to show that they accumulate

and release a key Parkinson's protein called alpha-synuclein.

This protein is mis-folded in the cell.

The cell can't process it properly, so it ejects it,

a bit like an ocean liner throwing its rubbish over the side.

It can't process it, it ejects it and then we think

it probably passes to the next neuron, the next dopamine neuron,

and that might be the way it spreads across the brain in a patient.

-So, it's like a domino effect across my brain?

-Exactly.

And we've recently found that, and this gives us new therapeutic opportunities,

because for a protein to spread,

it needs to be released from one cell and taken up by the next cell

and that gives us two potential targets for therapies.

So, while it's between cells?

And while it's between cells, it gives us another opportunity

that the immune system might be able to see it.

We might be able to develop vaccines or antibody therapies

where the immune system can come and clear out that protein as it tries to sneak from cell to cell.

'And while we're waiting, life goes on.

'And it goes on pretty well for some of us.'

'I did a skydive in 2012.

'It was very high and I dropped like a stone.

'With a very, very nice Liverpudlian behind me holding me, holding me tight.

'At first you think life is going to stop.

'Life as you know it.

'But in the end you've just got to brace yourself

'and just do something that you wouldn't otherwise do.

'And if I hadn't got Parkinson's, I'd never have done the dive, but I did.

'I'm not sure whether it's therapy.

'I certainly don't believe it's ballet from my point of view!

-'Or you, Paul.

-No.

'It's socialising, it's this meeting up at the end and talking to people.

'Finding out how people's last week has been.

'Yes, it's group therapy and R&R.'

APPLAUSE

-Now, earlier on, I did ask you to remember some words.

-Yes.

-I wonder if you could tell them back to me, please.

-'All together now...'

Face.

Velvet.

Church.

Daisy.

Red. Yes! Yes!

I'm not going to a home.

Oh, look, it's a sunset. I think it's time for me to go.

What have I learned?

A philosopher once said, I think it was Forrest Gump,

"Life is like a box of chocolates.

"You never know what you're going to get."

And Parkinson's is like a particularly rubbish sort of box of chocolates.

Every symptom, every chocolate is particularly disgusting.

But some are more disgusting than others.

And let's hope, as I come to the end of my five good years,

that I won't end up with the orange cream.

And there are things that I can do to help myself.

I can take advantage of the new therapies,

I can do exercise like the ballet,

I can keep myself cheerful by laughing at the disease,

and also, of course, I can have a go at this.

Thank you for being with me. Mmm.

HE LAUGHS WITH MOUTH FULL

Oh!

HE SOUNDS SATISFIED

Mmm.

Bye.

I did have an apple as well, but...

I think I'll stick to the chocolate.

Mmm.

I have no home to go to.

Cos my wife has chucked me out, cos I eat some chocolate, so...

This is actually my home now.

At least it's got a nice view, even though it is a bit cold.

Anyway, night-night.