Barbara Thompson: Playing Against Time

This is a film about Parkinson's disease,

one of the world's most common neurological disorders,

affecting 120,000 people in the UK alone.

The composer and virtuoso jazz saxophonist Barbara Thompson

was first diagnosed with Parkinson's in 1997,

one year after being awarded an MBE for her services to music.

Parkinson's disease is a progressive disorder of the central nervous system

in which sufferers lose control over the movements of their limbs and fingers,

becoming either a shaker, unable to stop moving,

or, like Barbara, a freezer, only able to move by taking drugs.

-This is a month's supply of tabs!

-Yeah.

A particularly tough problem if you're an improvising jazz musician.

Filmed at intervals across a period of five years,

this is a record of Barbara's astonishing determination,

aided by her husband jazz rock drummer Jon Hiseman,

to cope with her condition in ways that still enable her to compose

and to perform.

Builder's tea or Lady Grey?

Builder's would be very nice.

Builder's?

Do you do a lot of cooking still?

All of it.

I do the baked beans on toast.

Yeah, I mean what I do is...

there's certain things I can do before I've taken the medication,

but it's not a lot.

I don't put things off any more, I do them,

because I never know when I will be able to do them or not.

Oh, I'm going to sneeze...

Oh, oh! Ooh.

Oh!

-What's that?

-Oh!

Oh, I've strained a muscle here and when I sneeze or cough or...

Oh, you know it's a living nightmare, really, at the moment.

I keep wanting to pinch myself,

and say, you know, "This isn't happening!"

You know, it just doesn't seem possible.

We've been on a rollercoaster ride, really, for ten years.

At first, we didn't believe it.

At first, there was not much difference to the way we lived our lives,

but gradually things got more and more difficult,

and where we are now is, we're at the crossroads.

We're at the crossroads between everything being OK

and having to seriously change the way we live our lives.

In 1979, Barbara and Jon's musical partnership

was the subject of a 60-minute BBC documentary

and recently a new book has been written about them.

'In the old days we were balancing our musical life with the children,

'touring, being away, coming back, in and out all the time.

'Now, of course, it's balancing music and Parkinson's.'

We are not reliable as people anymore,

and it's becoming difficult.

We can live to our deadlines,

but it's becoming increasingly difficult to live to other people's.

I could organise a trip,

so that next August 17th we're on a stage in Vienna,

I mean, I can do that, that's easy,

but will we actually be able to walk out on that stage in Vienna

when the audience is ready?

That's what we don't know and that means it becomes very difficult

to take those kinds of things.

No, it's going to be a bit of a game, this is, I think.

Well, I mean...life is a game and...

-Yeah, nobody ever said it was going to be fair.

-No.

Barbara's band Paraphernalia,

with various changes of personnel along the way,

has been successfully touring, mostly in Europe, since the 1970s.

In 2005, with Barbara's physical condition increasingly unpredictable,

they set out on a farewell tour.

I'm glad to be back, but I don't know how long it will be before...

Well, as long as we can. We might get lucky.

We've always been lucky so far, so maybe we'll get lucky again.

The latest album, Never Say Goodbye,

I've written a lot of very happy things.

It's very up in mood. Got spirit, you know...

and hope.

Hope, spirit...joy.

Parkinson's disease was first defined as a medical condition

by James Parkinson, in London, in 1817.

Until then, it had been known from ancient times as the shaking palsy.

Parkinson's disease results from the loss of a chemical neurotransmitter in the brain called dopamine

and treatment of the disease involves the taking of various dopamine substitutes.

-Hiya.

-Hi, how are you?

-Sorry about the delay, we've been rather busy.

-No, no. No problem.

-Have a seat.

Do you want an improved quality of life?

Are you happy with your quality of life? That's the most important guide.

Well... BARBARA LAUGHS

-I'd rather be without all this!

-Yes.

-But that it isn't going to go anywhere, is it?

-Right.

-So reality tells you...

-Stem cells, stem cells!

I don't think it lays in stem cells.

There's loads of other things coming along, but it's maybe stem cells,

but the new drugs, like Duodopa, are really changing people's lives.

You're trying to replace a chemical like DOPA,

that we have normally to run a smooth run 24 hours a day

to deal with our emotions, our downs and our ups.

We're trying to mimic that with drugs.

-Her movements are the side effects of the drugs rather than the Parkinson's itself?

-Yes.

Cos we're trying to mimic an action of a chemical and we could go way over the top or way under,

but what is too much for a patient, for Barbara, may not be too much for another patient.

If I was to give another patient Barbara's dose, it would be too small.

-And if I gave Barbara their dose, she'd be on the floor.

-Yes.

So that's why it's fine-tuning you all.

There's no two patients the same and some patients cannot be treated.

Oh, that's a tragedy.

-They won't respond to medication.

-Right.

So you're lucky, in the sense we can still treat you and the medication to them is lost.

-Well, without it, I mean...

-You can't move?

-No.

'I find myself sharing a journey with Bill Worrall,

'who is a fellow Parkinson's sufferer.

'A few years ago, he played the keyboards in my band Paraphernalia

'and a wonderful player he was.'

-Sorry, I'm just seizing up all the time.

-Yeah.

It's just an unbelievable struggle just doing that much.

It's, it's hard to actually...

..put into words.

Do drugs allow you to play now?

No, they... No, unfortunately, I'm very different from Barbara,

in that respect.

With her, she gets back to pretty much normal,

or does completely get back to normal, whereas...

with me, they allow me to function, but they don't affect my left hand.

Even if I think I'm going to play a certain chord and...

I'll be looking at my hands and they literally won't move.

I mean, the right hand, as I say, I can get to do something.

But my left hand, to do the same thing would be...

I mean, the other thing is, you can't actually control it...

Well, I'd say it's dexterity.

I mean, if I really thumped the note,

if I think, "I've got to play that note," then I could.

But, if I wanted to play it softly...

I'm doing that and then...

It's very hard judging the amount of pressure you need to actually play.

What about your right hand?

Why do you think your right hand operates differently to your left?

Well, it's a known thing about Parkinson's...

-So, it's the left side?

-It was. It starts with one limb

and then progresses, normally, to the other limb that's on the same side.

It's obviously my left hand predominantly now

and it will...then progress to the left leg,

which I can feel it happening.

And how did it first manifest itself for you, Barbara?

It was just that we were doing a revival of some of some old stuff that Andrew Lloyd Webber had written,

and he'd got the Variations team together

-and I just had this thing to play on flute, you know...

-Is that The South Bank Show?

Yeah, it's me playing it on The South Bank Show now,

and it's such an easy thing

and I thought, "Oh, God I haven't done enough practise," you know.

Then I thought, "Oh, dear, dah-dah-dah-dah, that's not very clear", you know.

So I practised it hard and I played it OK,

but that was the first sign I had that something wasn't right

and then, after that, it was low trills,

you know, with the right hand.

I mean, I can do it fine now,

because the medication makes my fingers work.

This is like a nicotine patch.

Just shows how technical I am!

"Rotigotin... Rotigotine."

"Roti," like roast, French for roast, "got nee".

All right, Rotigotine. SHE LAUGHS

Anyway, you wear one every 24 hours and it's a dopamine agonist.

They think it actually stops your condition deteriorating further.

I take Stalevo, which is dopamine, it's the lowest supply you can get.

I take this every hour.

If you didn't take this pill now, what would happen?

I would gradually run out of dopamine

and I would end up not being able to walk and...

..totally helpless, really. It's...

-And feeling desperate.

-Yeah, and feeling awful.

-You get quite desperate.

-Yes, yes.

-That's the point.

-I mean, it's a psychological problem, too.

-Yeah.

And of course, then, of course, you live a lot of your life fearing going down.

It's a sort of Pavlovian thing,

-so this becomes another problem.

-I'm nervous if I'm out.

-Yeah.

I'm not nervous when I'm at home, because it doesn't matter.

'Barbara, somehow...'

She heard Roland Kirk and she absolutely decided

that she could play two saxophones at once, as well.

And the great thing about her was that she always played them in tune.

She can still play two saxophones, but the crisis at the moment

is that she can't really practise with any regularity,

because she's going down all the time.

It takes a lot of energy to play the saxophone.

Ah, I haven't played it for about 20 years!

Barbara's standard was very high and this is the problem at the moment.

It's difficult for her to hold for long periods,

she's moving about all the time, gently,

and, of course, she's going down all the time,

so, you know, she can do something in the morning,

but of course, when she gets to this afternoon she's wiped out, she can't practise.

-How are you feeling now?

-Terrible.

-Really?

-Yes.

-Really.

-What is the whole process of feeling...?

Well, what happens is,

I've run out of dopamine and...basically it's hard to stand,

it's hard to, you know, I feel exhausted.

I can just about keep my balance and...

..you know, I'm very weak and I just feel like a rag doll.

This is one of my best places,

because I can get in easily and prop myself up and just go to sleep.

If I get an attack and go down,

the first thing is, you're fighting the weight of your clothes.

My arms find it difficult to...

It sounds ridiculous, but a coat can be too heavy for me

and at night, if I'm sleeping,

I can't stand the weight of a duvet over me, you know, when I'm down,

because, when your muscles aren't working,

you've got no strength at all.

'Not being reliable, with Parkinson's,

'means, of course, you just can't know when you're going to go stiff,

'when you're not going to be able to move.

'Psychologically, you begin to fear the business of coming down.

'So when you come down, you begin to actually then get aberrations about

"Oh, my God," you know, "I can't go on like this, I can't..."

But the interesting thing is that, as soon as Barbara comes up,

she's, "Oh, let's...", you know, she's back to her old self again.

'When the Parkinson's Society asked me to perform at their Christmas do,

'I wrote an arrangement of Fanaid Grove

'for solo alto sax, choir and organ.'

The Fanaid Grove was originally recorded in an old abbey in France.

-So how many years has it been now?

-12.

My right side, it's my feet,

-I often don't know what my right foot's doing.

-Don't co-ordinate?

-No.

Stand up for me, turn around.

Movements are good.

If anything, you're just that little bit over,

but you probably prefer to run over.

I'm just going to pull you back, just hold yourself.

OK. A bit of a wobbler.

'The whole trick is, how do you deliver the drug that works?'

And we are hoping that Apomorphine,

delivered via a small electric pump

and an infusion line into the stomach area,

will solve the problem.

'The people at King's have had people on this for 14 years

'and they're still OK.'

'And, in theory, 14 years from now we will get some kind of a fix.'

We've got a little film here.

-This was taken in 2005.

-That was 2005.

Now, you can see that Barbara...

It's quite a fast tune...

and this dancing movement with her legs,

she's actually had at least for the last ten years.

-But, effectively, she's reasonably stable in front of the mic.

-Yeah.

And if you saw that on a stage, it would never occur to you there's anything funny going on.

OK?

Now, we did a concert recently at Ronnie Scott's.

Now this was three weeks ago, four weeks ago.

You can see this is a slow tune...

-..and you can look at the twisted nature of her trunk.

-Yes.

She's actually quite twisted over, in a way she never was.

-I had a terrible downer just before...

-Yes.

-I had to take...

-Yeah.

-..an extra hundred.

-You had taken a Levadopa...?

-Yeah, because I had a real downer.

-Oh, yeah.

In the dressing room before we went on.

-When Barbara was doing the injection before she played...

-Yes.

..before she was taking Levadopa, she had to lay down immediately for half an hour afterwards,

because otherwise she felt incredibly sick every time.

-I was actually sick.

-And she was sick several times,

-in a bucket by the stage.

-Yeah.

And then walked on and played beautifully! My life!

-Her life! So...

-The band were looking on!

The band just couldn't get this together at all,

and the promoters used to come in just before the gig,

"Have a wonderful gig," and Barbara was throwing up in a bucket

and you can imagine this was insane. Anyway, we did the gigs and it all worked fine.

The question, really, is what are the implications for that kind of thing, wearing a pump?

We've to take into consideration that you've now had Parkinson's for about 11 years,

so you're no longer in the so-called "early,"

or what some people call the "honeymoon", stage of Parkinson's,

you're in the so-called, "complex" stage of Parkinson's.

Using Apomorphine is a particularly good option,

because it will rationalise your oral treatments.

In spite of everything, you're now having to take several tablets, several times a day.

For a busy person, that's often quite difficult,

whereas with the Apomorphine infusion, you just put it on

in the morning, take it off in the evening.

-And you could programme the pump to deliver the drug for 12, 16 or 18 hours.

-Very interesting.

And this could address the problems we're having with sleep,

and when I say, "we", I mean we're still trying to sleep together. It's a bit of a game!

In fact, it would be over a year before Barbara's new treatment was given the official go-ahead.

I wrote Smokey Embrace after I got Parkinson's.

In fact, I did most of my composing after I was diagnosed,

because I thought I didn't have much time,

so I felt I must get on with it.

So in the last ten years, I've killed myself composing!

Now this is my domain, my own domain, which is very important to me,

to have a space like this to disappear to.

Whoever's in the house, I don't know if they're there or not,

so I can just work away.

SYNTHESISED VIOLINS AND HORNS PLAY

The French horns start.

Because of the difficulty of playing,

has composition taken over more of your life?

Erm...definitely.

I'm really a, sort of, full-time composer.

Tons of stuff.

This is The Crossing...

which is a big orchestral work which I'm trying to write.

BASS AND PERCUSSION

I have the controller somewhere...

Perhaps turn this volume down a bit?

Oh, I can turn the volume down.

The Crossing is a symphonic piece based on rush hour in Rome.

It's one of the most complicated pieces I've ever done.

So, it's an enormous score.

Do you think there's a relationship between music and Parkinson's Disease?

Yeah, it's my escape, because however awful I'm feeling,

I can listen to something like this, you know,

and then think about what I'm doing with it, you know.

I can forget myself, you know...

and that's, you know, why I'm happy here,

because I've been in dire straits

and I've come up here and I've just put on...

and then, you know, a few hours later, you feel better.

I really, I mean, John asks me how I'm feeling

and I don't like him doing that, cos I don't want to be reminded.

You know, I just want to get on with things as normally as possible

and be creative.

Has your experience been that people who are...

let's say, obsessive, or driven,

or who have a cause in life, or a vision,

something they want to achieve,

do you find they cope better with Parkinson's?

Those personalities are more prone to develop Parkinson's.

People who are very driven, often very obsessional...

they have a higher rate than normal of developing Parkinson's.

As a result, you're quite right, they are more likely also to cope with it better.

And, paradoxically, now we also know

that some of the drugs might actually, again, unmask those obsessional features.

So, it's a very complex issue,

how the whole personality interacts

with what is otherwise, broadly thought to be largely a motor syndrome,

where you have slowness, stiffness, difficulty with performing.

So, in a way, this is genetically written.

Her obsession since she was a young girl, with playing and performing and driving herself forward,

becoming one of the few lady saxophone successful players in the world,

-this has all, in a way, been written in the books...

-Yeah.

..to lead to something exactly like this?

It's all your fault!

THEY LAUGH

I love actually writing music, that is no problem.

What the problem is sorting it out...

SHE CHUCKLES

..so that other people can play it!

OK, so, we'll do that and we'll go from...

An improvising multi-instrumentalist,

Barbara has also composed orchestral, choral and chamber works for classical musicians.

Me, I don't write my music. It writes itself, you know.

I'm just the medium through which it passes.

I'm trying to show the saxophone off as well as it can be shown,

the things that it excels at.

It helps a lot to have first-hand knowledge of instruments when you write for them.

I know what the instruments can do.

It's such a versatile instrument,

that you can write lots of different effects.

They can sound like bells they can...growl,

they can shriek.

As a saxophonist you must be a tough audience for students to play to?

When they realise that I'm on their side

and all I want to do is make them sound as good as possible.

I'm not there to tear them down.

This was the recording of the Tuba Concerto with Foden's Brass Band,

one of the top brass bands in the country,

and James Gourlay, who is one of the world's foremost tuba players.

-HE LAUGHS

-James! Scary!

'Barbara's music is really challenging'

because it's about the hardest thing written for the tuba ever,

because the lines are very much like saxophone lines,

but a challenge should always be met.

This whole album features the tuba.

It's a very unusual album and...

I've written a duet.

They do multi-phonics. You know, they do chords as well, and harmonics.

'And because I'm not, you know, a brass player, I don't write for it.'

You know, it's something different in the way that they're used to.

This final part is where they go into a rhythm

and they really, they played it beautifully.

Yes, they go into a sort of groove, which is nice.

-JAMES:

-I think it's in its own language,

which is in a place between jazz and classical.

You have to play it in a classical way, almost a straight way,

but at the same time, you can't ignore the jazz influences there,

particularly when you're articulating phrases.

Why Double Trouble?

Well, they said they should be called Triple Trouble! SHE LAUGHS

And Quadruple Trouble they said!

It should be called Quintuple Trouble, not Double Trouble!

I think it's an insult to his worthiness not to give him a challenge.

It's too high and too hard,

and we can just barely get through without falling down.

'I write quite a lot of stuff, these days, for other people

'because the medication that I have to take

'makes it increasingly difficult for me to guarantee being on the stage at a certain time.'

'I can't put my right foot on stage, I feel like I'm going to fall over.'

So you feel like you're falling all the time?

I feel like I'm going to fall over.

I feel very precarious.

You're down at the moment?

Yeah, I'm very... I'm halfway down and halfway up.

I took a tablet at 6.25...

and I've been on a downer since then.

I have to work out when I should take one before we go on stage,

but I'm not sure when we're going on stage.

I've taken a strong one now, but I'm...well, stronger

but I will take a weak one before I go on stage,

otherwise I will be having too much movement

and I won't be able to hold the saxophone.

Still...

who am I to complain?

THEY LAUGH

There are certain things that when you've done it all your life, like playing tennis,

I can still play the shots that I have always played

and the same with table tennis cos, you know, it's an automatic reaction.

'And it's the same playing an instrument.'

It's not logical that you should be able to do them, really,

but I think sport and music is, sort of...exceptional,

the effect it has on you.

That's why PD sufferers should do as much as possible of both

cos, you know, frankly, though I'm knackered, I enjoy this.

'When I'm swimming, I can feel what is wrong with me.

'I can feel the weakness where there never used to be weakness.

'I find it's a good monitor, and it's great to feel free as well

'because the thing about Parkinson's is that you feel very heavy a lot of the time.'

There is certainly a very strong emotional, or motivational, element

to the whole issue of the motor expression of Parkinson's

and it's this area that's fascinating

and that we are really learning about at the moment.

So, music itself, do you think has a beneficial effect upon Parkinson's sufferers?

Well, it certainly would reduce many of the other stress related...

or rather "stressors", of the condition.

OK, you ready, everybody? Alles klar? Right.

-Jawohl, mein Herr!

-A one, a two, a one, two, three...

# I got blues in the morning Blue pills, reds and whites

# I got blues in the morning Blue pills, reds and whites

# They get me through my days

# And they get me through my nights... #

Leading the choir is the dynamic jazz singer Carol Grimes

and the sardonic blues they're singing is about Parkinson's

and written by choir member George Foster.

# Good morning pills Pills, what do you do?

# Good morning pills Pills, what do you do?

# You help my shakes But you have side effects, too

# You make me

# Shake, rattle, when I walk... #

When you engage your mind in something

that you are very at home in doing, music for instance,

it might actually have a beneficial effect

on some of the Parkinson's symptoms.

Anything that you have a high intensity of mental input to,

often has an interesting beneficial effect

on the motor problems of Parkinson's.

So, for instance...

many people with tremor, it may not come out normally,

but when you ask the person to mentally exercise,

do dual tasking, the tremor will come out.

There are these mysteries about Parkinson's.

Just the whole concept of how, you know, your hobbies

and how your passion for doing things,

how it affects the motor expression is a really fascinating one,

and one that we do not know, really, much about.

# Oh L- Dopa I've saved you till last

# Oh L- Dopa I've saved you till last

# To give me a rhyme For Diss-kine-easy-ass

# Cos I got a dis-regulated brain

# Driving me insane

# Dis-regulated brain

# Driving me insane

# I'll tell you what I mean

# I got those Dopamine

# Disregulation

# Syndrome blues...

# And bright orange pee-eee-ee, yeah! #

Whoa! THEY CHEER AND APPLAUD

I mean, it beggars belief that you could have an evening

of the most amazing entertainment, courtesy of this wretched disease

but, at the same time, buoyed up by the courage

and the amazing fortitude...

and, sort of, desire to conquer by the people who have it.

In 2005, at the Oxford Playhouse,

Barbara took part in a Parkinson's benefit event,

hosted by Jon Snow and Libby Purvis.

-Well, Barbara!

-APPLAUSE

Now, there was a terrible rumour going around several years ago, in the jazz world,

that you had, in fact, retired from touring,

because you were not well enough to play. Who put this about?

BARBARA LAUGHS

Well, it was partly my fault, because I decided to do a farewell tour

and that's always fatal! LAUGHTER

Has the music actually physically helped you?

I think it does.

I think anything where you forget what you are and who you are,

and just go with the rhythm is going to help you.

APPLAUSE AND CHEERING

But how about playing for Parkinson's Awareness events?

Yeah, I'm happy to do that.

I mean, that's a good cause and I'm hoping to do some more of that.

When... As you can see, I'm in a mess here!

When I've got myself sorted out,

in the autumn, I want to get on and write this piece for Tom Isaacs.

# That's life

# No, I can't deny it

# We Parkies need help

# And you can supply it

# It's been 11 years of shaking I've endured

# Now I feel it's time

# It's time

# To be cured. #

APPLAUSE AND CHEERING

Diagnosed in his twenties,

Tom Isaacs wrote a book about his marathon walk around Britain

to raise public awareness of Parkinson's.

And Barbara has now joined his campaign for a cure.

We're both trying to get on and do things and not let it,

you know, not give up, really.

We're both fighting, fighting is the word,

we're fighters in arms together.

-Oop!

-Oh!

We're not one for big rallies, it's all or nothing, isn't it!

-Ah!

-Eight-ten.

'What are the chances of an international jazz musician,

'saxophonist, and a chartered surveyor from Watford getting together?

'You know, in a strange way,

Parkinson's is bringing people like us together,

which is great.'

When one Parkie's person goes dyskinetic,

the other person does usually, as well.

-And you said that was Billy Joel.

-It is, a Billy Joel song,

-it's a song that I quite liked when I was younger

-Ah.

Cos it was...all about

how women are.

Oh right. SHE LAUGHS

And now it's how Parkinson's...

-How Parkinson's is, yeah, it is kind of the banes of my life!

-Yes.

Are you ready down there, then?

# To the fridge in the morning I reach for my juice

# There's a sign on the top Says "Shake well before use"

# But I don't need instructions I have expertise

# Completely superfluous message With Parkie's disease

# My shaving blade's waving around Like a hurricane

# It's a bit like the Texas Chainsaw Bathroom Massacre

# My electric toothbrush It needs no batteries

# I don't need power Cos I've got the Parkie's disease

# One thing with this Parkie's Of which I am sure

# That right now the science is out there

# To lead us to a cure. #

A lot of your lyrics finish with this up-vision, Tom,

about hope for an actual cure.

When Barbara was first diagnosed, the first thing was,

"In three, four years, five years, there'll be a fix,"

and, of course, it was a fantasy.

I was told it was going to be five years and, 15 years on, here we are,

and yet, there is enormous hope out there. The problem lies...

I think the cure is a process.

I don't see it as a fixed single event,

that one day we're all going to have Parkinson's,

the next day it will have gone magically.

It's not going to happen like that. It'll be a step by step process.

A lot of the onus is on us, the patients, to make more of a play,

to get more involved in the scientific process, to...

Encourage.

..to encourage and to really hit home what this condition's all about

and I think if we do that, then everything will be accelerated.

'Right, I've had Parkinson's for 14 years'

and since then, I've turned my attention to telling people

what Parkinson's is all about, to make people understand it.

Cos how can anyone even hope to treat Parkinson's

without having knowledge of what it's like to have it?

'I don't have to use my fingers so much,'

I don't have to write, or play saxophone.

All I need to do is to be able to speak to people

'and communication is all-important to me.'

As you all know, there is no known cure for Parkinson's,

and although it doesn't kill you, it is a life sentence.

Parkinson's challenges everything in life that is taken for granted,

there is no respite.

That's the challenge in Parkinson's

and that's why the work you are doing here at Oxford Bio Medica

is so important. Your product ProSavin is very exciting.

I didn't get paid to say that. I mean it. It really is.

There's things called growth factors,

which basically have been shown to re-grow the cells in the brain,

re-grow the networking in the brain that's lost.

But the problem is how we deliver it into the body and into the brain

so that it can work its wonders.

'There is all sorts of research going on

in Bristol, Holland, and the States,

'and we're getting there, you know.

'We're getting into the realms of delivering this molecule.'

Another form of treatment is a surgical procedure,

known as deep brain stimulation.

Although apprehensive of invasive brain surgery,

Barbara and Jon went to find out about it

from its foremost UK practitioner.

We're passing a wire into the brain

and passing a wire in the brain

has an intrinsic risk of haemorrhage,

causing a stroke or death.

But it's also true that no surgery

I do is entirely safe, I'm a neurosurgeon.

-Well, nothing's safe, anyway.

-No.

-But it's safer than most procedures.

-Right, yeah.

-Well what are we seeing there?

-Well, basically a plain X-Ray

of a patient's front.

Side, front and top

You can see that the cables are coiled under the scalp

and the electrodes are going in

to the target deep in the brain, all right. You can see?

And this is from the top

and you can see the cables under the skin that we'll be hooking up

to pass under the skin to go to the pacemaker.

I'm still interested in keeping my musical career going...

-Sure. Sure.

-..for myself.

So what do you find, when you treat people who use their hands

with what they're doing,

can they actually get back to what they were doing before Parkinson's?

Yes, if you were to be admitted to our unit

we would do a scan of your brain,

to look at the various targets we would like to implant

and then it would be possible

for us to give you a fairly accurate prediction

of how well you'd be after surgery.

And deep brain stimulation

has allowed musicians to go back to work.

In the right people, done by experienced surgeons,

I think it's a marvellous procedure.

Now this is how the operation is done, you see.

This is a patient with a tremulous Parkinson's disease,

-you can see he's wide awake...

-Yeah.

..and he's got this frame bolted to his head

and he's just had a scan to map out the sub-polaric nucleus.

And if you see this hand, you see its tremors

and if you watch that hand as we turn the current on,

you'll see the tremor disappear.

There it is, look.

Then my neurologist will examine him...

Then you'll see it's rock steady.

There it is, you can see the rigidity,

the stiffness, has completely gone.

Extraordinary.

And then we do it for the other side

and with everything going well,

the patient is put to sleep

and the connecting cables are run from the deep brain electrodes,

behind the ear under the skin, to a pacemaker

that we can put under the skin either in the chest

-or in the abdomen.

-Right.

-Have you any that have had it done say 15 years ago...

-Yes, yes.

..and it's still working fine?

Well yes, what happens is that surgery is dramatic

at alleviating the symptoms that we choose to alleviate, you see,

but, with time, Parkinson's develops other symptoms that don't respond,

like they can hyper-salivate,

you see they can develop sleep disorders.

They can develop bowel problems.

Some of them can become

cognitively impaired, you see.

Those aspects of Parkinson's disease

are not stopped by deep brain stimulation or anything else.

What do you think the long term chances

of a real fix coming in the next, say 15 years?

Parkinson's disease, being a multi-faceted disease,

I would find it hard to believe that one would find a cure for it,

but something that slows its progression is probable.

Right.

As a drug, rather than a...?

It could be reparative,

repairing the loss of dopamine cells in the brain.

So this could be the famous stem cell syndrome?

Yes, a sort of stem cell, yeah, whatever variety is used.

There are still quite a lot of problems to be sorted out with it

before it becomes a clinical reality.

A stem cell therapy, I believe,

would be a possible therapy in about 15 years.

Has what you heard changed your mind about deep brain surgery?

'It's fascinating,

'but I still don't like the idea for myself.

'It may work for some people but for me, it's the last resort.'

This is A Slow Tango and it's one of the darkest pieces that we play.

One of the great inventions of the, over the last century...

To make his life easier,

Barbara's fellow sufferer, Bill Worrall,

has invented ingenious personal solutions to simple problems,

like holding a phone...

A bit of Velcro on your cap

-and Velcro on your phone...

-JON LAUGHS

and there we have one solution.

That's just absolutely great, Bill!

Absolutely perfect, mate...

..or watching TV while lying down.

So, I lie down on the floor and watch it in a mirror,

a mirror view, as it were.

At the same time, the unbearable experience

of living with Parkinson's can lead to a desperate search

for alternative, quasi-medical, magic cures.

The last time we met, you and Barbara had just been to Spain.

Yeah.

Now, you'd been to Spain to have these little tiny titanium needles

-implanted in your ears.

-Yeah.

By a man who charged you an awful lot of money to do this.

The chap said to Barbara, when he was doing you,

"Don't worry. I'll do you this afternoon,"

-and Barbara didn't have it done.

-Yes.

So I'm very interested to know what has happened in the interim?

Well, the simple answer is things have got a lot worse.

How long did it take to start feeling worse?

Well, it's been gradual,

but it certainly was several months

before it was quite as obvious

as it has been recently.

So, I mean I've basically got about 56 in each ear. You can feel it.

So on the outside here, yes...

Right, yes, yes, so, on the outside here

-all the way down towards the lobe...

-Yeah.

..you've got 56 little titanium needles, in each ear,

-implanted under the skin?

-Yeah.

And you paid how much for this?

It was about seven grand.

Just literally, like with a clicker, you put one in and you go "Click!"

It was a bit of a shot in the dark.

I mean, obviously, financially, it was a lot of money,

but the thing that attracted me to it, other than that,

was it was fairly non-invasive.

If nothing happens, the only thing

there'll be is a dent in my bank balance.

You've only got to keep an eye on Michael J Fox,

-cos if there's a cure, he'll have it.

-He's first in line!

Well, it's the same with Muhammad Ali, isn't it?

Yeah, sure, sure.

-If people with that amount of money haven't found it, then...

-Exactly.

-..what chance for the likes of us?

-Exactly, exactly.

'When I play a ballad, I'm actually singing.

'I'm playing an instrument but I am singing words in my...

'You know, there's a meaning to it.

'Nightwatch is very lonely. She is by herself.'

You know, I just imagine when I'm playing that she's there.

She's trying to stay awake, you know, it's late.

During this gig at Ronnie Scott's, Barbara's L-dopa tablets

were inducing movements that made it difficult for her to hold

the saxophone steady in her mouth.

Unless she could change to the recommended new apomorphine treatment,

Barbara realised she'd no longer be able to play in public.

I'm feeling totally dead.

-You're feeling totally dead?

-Yeah.

I don't know whether I can move anything.

How could you possibly have played the way you played last night?

I don't know. I've got to get up now.

I've got to get up.

Let's see if it makes you think about yourself.

Oh.

When I'm actually...not up,

I sometimes strain my right hand,

by doing things with it which I shouldn't be doing.

It's twice the size of my left one.

-Do you ever see things that are not there?

-Oh, yeah, all the time.

But actually, it is there,

but it's shapes of things, of something else.

For example, when I got out of bed at three o'clock this morning

there was a big individual just by me

in a sort of cap, very tall.

Welcome to the world of Parkinson's!

Yeah, but are they there and we don't see them?

With other patients, you get a whole film set outside.

They call the police, cos they haven't asked permission to film

-and so on.

-Oh, really?

-Yeah, you often get this behaviour

as Parkinson's advances on.

Barbara thinks there's a film crew in here with us now!

There's a surprise!

So, we're all having hallucinations!

LAUGHTER

Mike. Mike!

Mike? Mike's not here, darling.

Can you help me up in a sitting position, please?

-I feel sick.

-Oh, yeah?

-Yeah.

-I need to be helped.

-I'll get you up.

I'm...I'm paralysed now. I can't move.

Oh, that pain on my side.

Come on.

-Come on.

-What are you doing?

-Come on.

-Hold on a minute.

'Sometimes she can stand at the window and tell me what's going on

and of course there's nothing going on outside the window.

We know it and we talk about it.

-It's like a waking dream for Barbara.

-Sure.

We're assuming, at the moment, there's nothing to worry about.

Again, these sound, to me, like hallucinations...

and the so-called benign hallucinations

-will give us insight about it.

-Yeah, I don't worry about it.

When they become scary, when they become troublesome,

when they intrude on your personality,

when they make you behave in an irrational manner,

that's when, really, we need to probably think about it.

We do know that hallucinations,

delusions, paranoia, etc.

are all, CAN all be caused by dopamine agonists.

You ready? Here we go.

-Oh darling.

-Oh!

-What's up, huh?

-Oh, oh.

Oh.

Sometimes I think I'll never walk again.

-(There we go.)

-God.

SINGING:

'I wrote this piece and recorded it with Big Sky

'for the Norwich Community Choir.

'I think most of my music is based

'on either universal truths

'or images of everyday life.

'Writing choral music, you have to be careful

to match the music to words,

'and when I chose a poet for my work, Journey,

I had to search...

'..and I found Tagore.

'He was the answer to my prayers.'

I found a lot of the poems very close to the home truths

of what we are and what we are about,

and the fact that we are on a journey through life,

and that the destination

is least where you think it is.

Months went by, as arguments took place about which health authority

would provide Barbara's new Apomorphine treatment.

The problem started over a year ago now,

when Ray Chaudhuri, the specialist, recommended she go on this drug.

We're a year away now and we still haven't got it.

I wrote to the MP, claiming that,

in fact, she wasn't getting this

because they couldn't make up their mind

who was going to pay for it.

When somebody like Barbara, 12 years into Parkinson's,

needs a serious drug that's going to be very expensive,

then, at the end of the day,

somebody's got to be made to pay for this

and I believe the problem is about funding

and it's being hidden in this euphemistic phrase,

"shared care guidelines".

Work is waiting for us, but work, of course, has to be fixed up

six or nine months ahead

and, until we can get some sense of what Apomorphine will do for her,

we are caught like rats in a trap here, unable to work,

with all the people that would normally be working with us unable to work, either.

At last, in November 2009,

the funding issues were resolved.

So, we're a year after Ray first suggested this

and six months after you did the challenge.

I don't want to experience what you two have been through.

Somehow, it's all come together in a week.

-So, you have your pump ready?

-Yes.

At the moment, it's set at 0.3 and your bonus is 0.3.

-Right.

-This is your bonus but we'll go through all this

once I've switched you on. It's pointless going over this

-when your brain's not totally switched on.

-That's right!

It's a waste of time, so we're better off doing it when you're actually on.

Let's now run you through and you're all ready to go.

So, this is your big moment.

Right.

-Going to go into your tummy.

-Yeah, whatever you want.

I'll show you, if you watch carefully.

Done. That's it. Simple as that.

Hold on to your pump.

OK, let it go for me.

And that's all set now, to run.

-Right.

-OK, that's you up and running.

-Not so bad, huh?

-No. You can do that, can't you?

Yeah, sure. No probs, darling.

So, how do you feel?

I don't know.

It's tiny what's going in.

This is bypassing your gut.

It's going straight into your system, subcutaneous,

into the brain, and gently working on the receptors, to switch them on.

And it's not being interfered with by food and drink.

-No, it's not.

-The tablets are, and that is what's bringing

-all this uncertainty into it when you take tablets.

-Yes.

-I'm getting taller.

-Yeah, you're straightening up nicely now.

Let's have a look at your hand movements.

Much better. It's getting there.

-Your face is clearing.

-Yeah.

-I can see the movements

Should've brought your saxophone in, you could have given us a tune!

SAXOPHONE MUSIC

-Feel good?

-Yeah.

I feel like a huge cup of tea.

-Can we have a cup of tea?

-Yes, you can have a cup of tea.

Amazingly, soon Barbara's condition

improved to the point where Jon could include her

in the line-up for the forthcoming tour

of his veteran rock band, Colosseum.

I'm going to go and tell him that.

-What about the length of the set, though?

-It's scheduled for an hour

and a half, including encores. It's seven o'clock til 8.30.

Did you think you'd ever be performing with Colosseum again?

I didn't think so, no.

Is this the first tour you've done for a long time?

Yes, it is.

The last concert I did was at Ronnie Scott's, with Paraphernalia.

Kitchen and saxophone is your job, if you don't mind!

Look, I can't be in two places at once!

Why not? Why not?

I can't get lunch and do the rehearsal!

I didn't think I'd be playing with anyone, actually,

let alone Colosseum!

I was really getting in a bad state, actually.

I mean, it's still not straightforward,

but it's a million times better than it was.

Back to the real world.

Back to the real world!

Yes, it's true.

It feels fine, it doesn't hurt at all.

-This one doesn't hurt at all?

-No.

-You've got a nasty bruise there from a previous thing.

-Yeah.

The needle stays in from nine in the morning until about...

One in the morning, sometimes.

One in the morning, sometimes.

And although that's not painful,

she wouldn't really know it was there. The trouble is that

after you've taken it out,

-it produces these little nodules under the...

-Lumps.

-..skin.

You can't insert into those nodules.

In the end, after six months, the whole of her stomach now

is virtually unusable, because of these nodules.

We have to actually massage them away,

but this is proving very difficult.

There's so many little bits to this

and when we're at home, we're very well organised.

-But here, of course...

-That's why you really need someone

to do it with you. You can't really do this by yourself.

I have one pack in my case, she has one pack in another

and that way, we are able always to make sure

that we've got the stuff with us, you see...

when we're travelling.

This goes on here, like this.

And then we take some of these.

The reason why this drug has not been more widely used

is that actually it produces sickness,

it produces low blood pressure

and it has to be tolerated.

And the way to tolerate it is you now can take drugs for the sickness

and you watch the low blood pressure.

Slowly, you ramp up the drug

and you become completely inured to it, in the end.

Yeah. I mean, it's a miracle drug, really.

When I'm on it, I just carry on normally.

You can't ask for more than that, can you?

But, you know, when I'm not on anything, I can't hardly move.

What I'm going to do is I'm going to prime the pump.

There it is, there it comes, so now I stop the pump.

This is quite a complicated learning process for you, Jon?

Well...I'm just a techie, you know.

It's good it's this way round, not me doing it.

This is sticky now, and now we take the sheath off.

And there's the needle, OK?

And it's one movement. You've got one chance only

and there it is, like so. OK?

The drug's now going in quite fast,

much faster than it would do normally,

but this is a boost. This is to switch her on.

All I have to do now is wait for this drug to work.

Bloody jazz musicians, you know,

and their bloody drugs!

If the audience you're playing to tonight could see you like this,

they'd never believe it, would they?

I mean, they'd never believe it. It's incredible.

It's a miracle this drug, definitely.

Here.

Oh, right. So you've got completely new gear for this?

Oh, absolutely.

The perfect jeans, yeah.

They look good.

And this is...

This is a new purchase?

-Yeah, my new top.

-Oh, right.

Yeah? It's just an excuse to dress up, really!

I play in comfortable, relatively loose trousers.

The most important thing is the bottoms aren't wide enough

to catch the pedals on the rebound. If they catch,

I can get sucked into the vortex of my own drum kit!

Dirk, who's our agent for Europe, needs a lead time.

Nine months. The big problem for me with Barbara

is making the decision that in nine months' time,

she's going to be in good enough shape

to do a rigorous European tour, and I'm saying to him,

"We're on a rollercoaster ride with this Apomorphine,

"with Barbara's Parkinson's and I just can't tell you."

This is going to be a little ticking time-bomb

for which there is no real answer.

We've got 18 people on the road with the band

and you commit those people and their livelihoods.

You can't just say, two months before the tour,

"Sorry, we're not going to do the tour".

And this is going to be the problem.

Not so much the fact that she might not be able to play on a given date,

but how can I be sure nine months ahead?

We could go on for ever. And Barbara can be composing in her nineties,

as many composers have done.

And this means that there's no end, really.

As long as we can be creative, which is what we've done all our lives,

we are in a very, very lucky, fortunate situation.

We've organised our lives so that we didn't have to compromise,

we could make our own music, create our own public.

I get the feeling, when I see you play, you forget about it.

Somehow you get so caught up in the moment of playing,

that your body has a power

which you almost can't imagine it still has.

Yeah, I do forget about it. I think about the music.

# Welcome to Vienna

# And welcome to tomorrow's

# Blues. #

APPLAUSE AND CHEERING

It's 14 years, nearly 14 years now.

Music has helped me really live with it as long as I have.

Subtitles by Red Bee Media Ltd