0:00:39 > 0:00:42This is a film about Parkinson's disease,
0:00:42 > 0:00:45one of the world's most common neurological disorders,
0:00:45 > 0:00:48affecting 120,000 people in the UK alone.
0:00:58 > 0:01:03The composer and virtuoso jazz saxophonist Barbara Thompson
0:01:03 > 0:01:07was first diagnosed with Parkinson's in 1997,
0:01:07 > 0:01:12one year after being awarded an MBE for her services to music.
0:01:17 > 0:01:22Parkinson's disease is a progressive disorder of the central nervous system
0:01:22 > 0:01:26in which sufferers lose control over the movements of their limbs and fingers,
0:01:26 > 0:01:30becoming either a shaker, unable to stop moving,
0:01:30 > 0:01:34or, like Barbara, a freezer, only able to move by taking drugs.
0:01:34 > 0:01:38- This is a month's supply of tabs!- Yeah.
0:01:38 > 0:01:41A particularly tough problem if you're an improvising jazz musician.
0:01:50 > 0:01:54Filmed at intervals across a period of five years,
0:01:54 > 0:01:57this is a record of Barbara's astonishing determination,
0:01:57 > 0:02:00aided by her husband jazz rock drummer Jon Hiseman,
0:02:00 > 0:02:05to cope with her condition in ways that still enable her to compose
0:02:05 > 0:02:06and to perform.
0:02:14 > 0:02:17Builder's tea or Lady Grey?
0:02:17 > 0:02:19Builder's would be very nice.
0:02:19 > 0:02:21Builder's?
0:02:21 > 0:02:23Do you do a lot of cooking still?
0:02:23 > 0:02:24All of it.
0:02:24 > 0:02:26I do the baked beans on toast.
0:02:27 > 0:02:30Yeah, I mean what I do is...
0:02:30 > 0:02:34there's certain things I can do before I've taken the medication,
0:02:34 > 0:02:35but it's not a lot.
0:02:35 > 0:02:38I don't put things off any more, I do them,
0:02:38 > 0:02:43because I never know when I will be able to do them or not.
0:02:43 > 0:02:45Oh, I'm going to sneeze...
0:02:45 > 0:02:47Oh, oh! Ooh.
0:02:47 > 0:02:48Oh!
0:02:48 > 0:02:50- What's that?- Oh!
0:02:50 > 0:02:55Oh, I've strained a muscle here and when I sneeze or cough or...
0:02:55 > 0:03:01Oh, you know it's a living nightmare, really, at the moment.
0:03:01 > 0:03:03I keep wanting to pinch myself,
0:03:03 > 0:03:06and say, you know, "This isn't happening!"
0:03:07 > 0:03:10You know, it just doesn't seem possible.
0:03:10 > 0:03:14We've been on a rollercoaster ride, really, for ten years.
0:03:14 > 0:03:16At first, we didn't believe it.
0:03:16 > 0:03:21At first, there was not much difference to the way we lived our lives,
0:03:21 > 0:03:24but gradually things got more and more difficult,
0:03:24 > 0:03:26and where we are now is, we're at the crossroads.
0:03:26 > 0:03:29We're at the crossroads between everything being OK
0:03:29 > 0:03:33and having to seriously change the way we live our lives.
0:03:44 > 0:03:48In 1979, Barbara and Jon's musical partnership
0:03:48 > 0:03:52was the subject of a 60-minute BBC documentary
0:03:52 > 0:03:55and recently a new book has been written about them.
0:03:58 > 0:04:03'In the old days we were balancing our musical life with the children,
0:04:03 > 0:04:06'touring, being away, coming back, in and out all the time.
0:04:06 > 0:04:10'Now, of course, it's balancing music and Parkinson's.'
0:04:11 > 0:04:14We are not reliable as people anymore,
0:04:14 > 0:04:16and it's becoming difficult.
0:04:16 > 0:04:17We can live to our deadlines,
0:04:17 > 0:04:21but it's becoming increasingly difficult to live to other people's.
0:04:21 > 0:04:22I could organise a trip,
0:04:22 > 0:04:26so that next August 17th we're on a stage in Vienna,
0:04:26 > 0:04:28I mean, I can do that, that's easy,
0:04:28 > 0:04:31but will we actually be able to walk out on that stage in Vienna
0:04:31 > 0:04:33when the audience is ready?
0:04:33 > 0:04:36That's what we don't know and that means it becomes very difficult
0:04:36 > 0:04:38to take those kinds of things.
0:04:38 > 0:04:40No, it's going to be a bit of a game, this is, I think.
0:04:40 > 0:04:45Well, I mean...life is a game and...
0:04:45 > 0:04:48- Yeah, nobody ever said it was going to be fair.- No.
0:04:58 > 0:05:00Barbara's band Paraphernalia,
0:05:00 > 0:05:03with various changes of personnel along the way,
0:05:03 > 0:05:08has been successfully touring, mostly in Europe, since the 1970s.
0:05:10 > 0:05:15In 2005, with Barbara's physical condition increasingly unpredictable,
0:05:15 > 0:05:17they set out on a farewell tour.
0:05:24 > 0:05:30I'm glad to be back, but I don't know how long it will be before...
0:05:30 > 0:05:33Well, as long as we can. We might get lucky.
0:05:33 > 0:05:37We've always been lucky so far, so maybe we'll get lucky again.
0:05:40 > 0:05:43The latest album, Never Say Goodbye,
0:05:43 > 0:05:45I've written a lot of very happy things.
0:05:45 > 0:05:50It's very up in mood. Got spirit, you know...
0:05:50 > 0:05:52and hope.
0:05:52 > 0:05:56Hope, spirit...joy.
0:06:15 > 0:06:19Parkinson's disease was first defined as a medical condition
0:06:19 > 0:06:23by James Parkinson, in London, in 1817.
0:06:23 > 0:06:28Until then, it had been known from ancient times as the shaking palsy.
0:06:33 > 0:06:40Parkinson's disease results from the loss of a chemical neurotransmitter in the brain called dopamine
0:06:40 > 0:06:45and treatment of the disease involves the taking of various dopamine substitutes.
0:06:45 > 0:06:46- Hiya.- Hi, how are you?
0:06:46 > 0:06:51- Sorry about the delay, we've been rather busy.- No, no. No problem. - Have a seat.
0:06:51 > 0:06:54Do you want an improved quality of life?
0:06:54 > 0:06:58Are you happy with your quality of life? That's the most important guide.
0:06:58 > 0:07:00Well... BARBARA LAUGHS
0:07:00 > 0:07:04- I'd rather be without all this!- Yes.
0:07:04 > 0:07:06- But that it isn't going to go anywhere, is it?- Right.
0:07:06 > 0:07:09- So reality tells you... - Stem cells, stem cells!
0:07:09 > 0:07:10I don't think it lays in stem cells.
0:07:10 > 0:07:13There's loads of other things coming along, but it's maybe stem cells,
0:07:13 > 0:07:17but the new drugs, like Duodopa, are really changing people's lives.
0:07:17 > 0:07:19You're trying to replace a chemical like DOPA,
0:07:19 > 0:07:23that we have normally to run a smooth run 24 hours a day
0:07:23 > 0:07:26to deal with our emotions, our downs and our ups.
0:07:26 > 0:07:28We're trying to mimic that with drugs.
0:07:28 > 0:07:33- Her movements are the side effects of the drugs rather than the Parkinson's itself?- Yes.
0:07:33 > 0:07:38Cos we're trying to mimic an action of a chemical and we could go way over the top or way under,
0:07:38 > 0:07:42but what is too much for a patient, for Barbara, may not be too much for another patient.
0:07:42 > 0:07:45If I was to give another patient Barbara's dose, it would be too small.
0:07:45 > 0:07:48- And if I gave Barbara their dose, she'd be on the floor.- Yes.
0:07:48 > 0:07:51So that's why it's fine-tuning you all.
0:07:51 > 0:07:55There's no two patients the same and some patients cannot be treated.
0:07:55 > 0:07:56Oh, that's a tragedy.
0:07:56 > 0:07:59- They won't respond to medication. - Right.
0:07:59 > 0:08:03So you're lucky, in the sense we can still treat you and the medication to them is lost.
0:08:03 > 0:08:05- Well, without it, I mean... - You can't move?- No.
0:08:14 > 0:08:20'I find myself sharing a journey with Bill Worrall,
0:08:20 > 0:08:23'who is a fellow Parkinson's sufferer.
0:08:23 > 0:08:28'A few years ago, he played the keyboards in my band Paraphernalia
0:08:28 > 0:08:31'and a wonderful player he was.'
0:08:35 > 0:08:37- Sorry, I'm just seizing up all the time.- Yeah.
0:08:37 > 0:08:39It's just an unbelievable struggle just doing that much.
0:08:39 > 0:08:41It's, it's hard to actually...
0:08:43 > 0:08:44..put into words.
0:08:44 > 0:08:46Do drugs allow you to play now?
0:08:48 > 0:08:51No, they... No, unfortunately, I'm very different from Barbara,
0:08:51 > 0:08:53in that respect.
0:08:53 > 0:08:56With her, she gets back to pretty much normal,
0:08:56 > 0:08:59or does completely get back to normal, whereas...
0:08:59 > 0:09:03with me, they allow me to function, but they don't affect my left hand.
0:09:03 > 0:09:07Even if I think I'm going to play a certain chord and...
0:09:07 > 0:09:10I'll be looking at my hands and they literally won't move.
0:09:10 > 0:09:14I mean, the right hand, as I say, I can get to do something.
0:09:16 > 0:09:19But my left hand, to do the same thing would be...
0:09:21 > 0:09:24I mean, the other thing is, you can't actually control it...
0:09:24 > 0:09:26Well, I'd say it's dexterity.
0:09:26 > 0:09:28I mean, if I really thumped the note,
0:09:28 > 0:09:31if I think, "I've got to play that note," then I could.
0:09:31 > 0:09:35But, if I wanted to play it softly...
0:09:35 > 0:09:37I'm doing that and then...
0:09:37 > 0:09:41It's very hard judging the amount of pressure you need to actually play.
0:09:41 > 0:09:43What about your right hand?
0:09:48 > 0:09:51Why do you think your right hand operates differently to your left?
0:09:51 > 0:09:54Well, it's a known thing about Parkinson's...
0:09:54 > 0:09:57- So, it's the left side? - It was. It starts with one limb
0:09:57 > 0:10:03and then progresses, normally, to the other limb that's on the same side.
0:10:03 > 0:10:06It's obviously my left hand predominantly now
0:10:06 > 0:10:08and it will...then progress to the left leg,
0:10:08 > 0:10:10which I can feel it happening.
0:10:10 > 0:10:13And how did it first manifest itself for you, Barbara?
0:10:13 > 0:10:19It was just that we were doing a revival of some of some old stuff that Andrew Lloyd Webber had written,
0:10:19 > 0:10:22and he'd got the Variations team together
0:10:22 > 0:10:26- and I just had this thing to play on flute, you know... - Is that The South Bank Show?
0:10:26 > 0:10:29Yeah, it's me playing it on The South Bank Show now,
0:10:29 > 0:10:31and it's such an easy thing
0:10:31 > 0:10:35and I thought, "Oh, God I haven't done enough practise," you know.
0:10:39 > 0:10:42Then I thought, "Oh, dear, dah-dah-dah-dah, that's not very clear", you know.
0:10:42 > 0:10:45So I practised it hard and I played it OK,
0:10:45 > 0:10:49but that was the first sign I had that something wasn't right
0:10:49 > 0:10:52and then, after that, it was low trills,
0:10:52 > 0:10:54you know, with the right hand.
0:10:55 > 0:10:58I mean, I can do it fine now,
0:10:58 > 0:11:02because the medication makes my fingers work.
0:11:03 > 0:11:05This is like a nicotine patch.
0:11:05 > 0:11:08Just shows how technical I am!
0:11:08 > 0:11:13"Rotigotin... Rotigotine."
0:11:13 > 0:11:19"Roti," like roast, French for roast, "got nee".
0:11:19 > 0:11:22All right, Rotigotine. SHE LAUGHS
0:11:22 > 0:11:28Anyway, you wear one every 24 hours and it's a dopamine agonist.
0:11:28 > 0:11:34They think it actually stops your condition deteriorating further.
0:11:34 > 0:11:42I take Stalevo, which is dopamine, it's the lowest supply you can get.
0:11:42 > 0:11:44I take this every hour.
0:11:44 > 0:11:47If you didn't take this pill now, what would happen?
0:11:47 > 0:11:50I would gradually run out of dopamine
0:11:50 > 0:11:56and I would end up not being able to walk and...
0:11:58 > 0:12:03..totally helpless, really. It's...
0:12:03 > 0:12:05- And feeling desperate. - Yeah, and feeling awful.
0:12:05 > 0:12:08- You get quite desperate. - Yes, yes.- That's the point.
0:12:08 > 0:12:10- I mean, it's a psychological problem, too.- Yeah.
0:12:10 > 0:12:15And of course, then, of course, you live a lot of your life fearing going down.
0:12:15 > 0:12:17It's a sort of Pavlovian thing,
0:12:17 > 0:12:20- so this becomes another problem. - I'm nervous if I'm out.- Yeah.
0:12:20 > 0:12:23I'm not nervous when I'm at home, because it doesn't matter.
0:12:31 > 0:12:34'Barbara, somehow...'
0:12:34 > 0:12:37She heard Roland Kirk and she absolutely decided
0:12:37 > 0:12:41that she could play two saxophones at once, as well.
0:12:41 > 0:12:46And the great thing about her was that she always played them in tune.
0:12:56 > 0:12:59She can still play two saxophones, but the crisis at the moment
0:12:59 > 0:13:03is that she can't really practise with any regularity,
0:13:03 > 0:13:06because she's going down all the time.
0:13:06 > 0:13:09It takes a lot of energy to play the saxophone.
0:13:25 > 0:13:28Ah, I haven't played it for about 20 years!
0:13:37 > 0:13:41Barbara's standard was very high and this is the problem at the moment.
0:13:41 > 0:13:45It's difficult for her to hold for long periods,
0:13:45 > 0:13:47she's moving about all the time, gently,
0:13:47 > 0:13:50and, of course, she's going down all the time,
0:13:50 > 0:13:52so, you know, she can do something in the morning,
0:13:52 > 0:13:57but of course, when she gets to this afternoon she's wiped out, she can't practise.
0:13:57 > 0:13:59- How are you feeling now?- Terrible.
0:13:59 > 0:14:02- Really?- Yes.
0:14:02 > 0:14:04- Really.- What is the whole process of feeling...?
0:14:04 > 0:14:06Well, what happens is,
0:14:06 > 0:14:13I've run out of dopamine and...basically it's hard to stand,
0:14:13 > 0:14:17it's hard to, you know, I feel exhausted.
0:14:17 > 0:14:20I can just about keep my balance and...
0:14:22 > 0:14:28..you know, I'm very weak and I just feel like a rag doll.
0:14:30 > 0:14:32This is one of my best places,
0:14:32 > 0:14:38because I can get in easily and prop myself up and just go to sleep.
0:14:38 > 0:14:41If I get an attack and go down,
0:14:41 > 0:14:46the first thing is, you're fighting the weight of your clothes.
0:14:46 > 0:14:48My arms find it difficult to...
0:14:48 > 0:14:51It sounds ridiculous, but a coat can be too heavy for me
0:14:51 > 0:14:54and at night, if I'm sleeping,
0:14:54 > 0:14:59I can't stand the weight of a duvet over me, you know, when I'm down,
0:14:59 > 0:15:01because, when your muscles aren't working,
0:15:01 > 0:15:03you've got no strength at all.
0:15:07 > 0:15:09'Not being reliable, with Parkinson's,
0:15:09 > 0:15:13'means, of course, you just can't know when you're going to go stiff,
0:15:13 > 0:15:14'when you're not going to be able to move.
0:15:14 > 0:15:18'Psychologically, you begin to fear the business of coming down.
0:15:18 > 0:15:22'So when you come down, you begin to actually then get aberrations about
0:15:22 > 0:15:25"Oh, my God," you know, "I can't go on like this, I can't..."
0:15:25 > 0:15:29But the interesting thing is that, as soon as Barbara comes up,
0:15:29 > 0:15:33she's, "Oh, let's...", you know, she's back to her old self again.
0:15:46 > 0:15:51'When the Parkinson's Society asked me to perform at their Christmas do,
0:15:51 > 0:15:55'I wrote an arrangement of Fanaid Grove
0:15:55 > 0:15:59'for solo alto sax, choir and organ.'
0:15:59 > 0:16:07The Fanaid Grove was originally recorded in an old abbey in France.
0:16:37 > 0:16:40- So how many years has it been now?- 12.
0:16:41 > 0:16:42My right side, it's my feet,
0:16:42 > 0:16:46- I often don't know what my right foot's doing.- Don't co-ordinate?- No.
0:16:46 > 0:16:50Stand up for me, turn around.
0:16:50 > 0:16:51Movements are good.
0:16:51 > 0:16:53If anything, you're just that little bit over,
0:16:53 > 0:16:55but you probably prefer to run over.
0:16:55 > 0:16:59I'm just going to pull you back, just hold yourself.
0:17:02 > 0:17:04OK. A bit of a wobbler.
0:17:10 > 0:17:16'The whole trick is, how do you deliver the drug that works?'
0:17:16 > 0:17:20And we are hoping that Apomorphine,
0:17:20 > 0:17:24delivered via a small electric pump
0:17:24 > 0:17:28and an infusion line into the stomach area,
0:17:28 > 0:17:30will solve the problem.
0:17:33 > 0:17:37'The people at King's have had people on this for 14 years
0:17:37 > 0:17:38'and they're still OK.'
0:17:40 > 0:17:44'And, in theory, 14 years from now we will get some kind of a fix.'
0:17:49 > 0:17:51We've got a little film here.
0:17:52 > 0:17:55- This was taken in 2005. - That was 2005.
0:17:55 > 0:17:58Now, you can see that Barbara...
0:18:01 > 0:18:04It's quite a fast tune...
0:18:04 > 0:18:06and this dancing movement with her legs,
0:18:06 > 0:18:09she's actually had at least for the last ten years.
0:18:11 > 0:18:18- But, effectively, she's reasonably stable in front of the mic.- Yeah.
0:18:18 > 0:18:22And if you saw that on a stage, it would never occur to you there's anything funny going on.
0:18:25 > 0:18:26OK?
0:18:28 > 0:18:33Now, we did a concert recently at Ronnie Scott's.
0:18:33 > 0:18:37Now this was three weeks ago, four weeks ago.
0:18:37 > 0:18:40You can see this is a slow tune...
0:18:40 > 0:18:44- ..and you can look at the twisted nature of her trunk.- Yes.
0:18:44 > 0:18:47She's actually quite twisted over, in a way she never was.
0:18:49 > 0:18:52- I had a terrible downer just before...- Yes.
0:18:52 > 0:18:55- I had to take...- Yeah. - ..an extra hundred.
0:18:56 > 0:19:00- You had taken a Levadopa...? - Yeah, because I had a real downer.- Oh, yeah.
0:19:00 > 0:19:02In the dressing room before we went on.
0:19:02 > 0:19:07- When Barbara was doing the injection before she played...- Yes.
0:19:07 > 0:19:12..before she was taking Levadopa, she had to lay down immediately for half an hour afterwards,
0:19:12 > 0:19:15because otherwise she felt incredibly sick every time.
0:19:15 > 0:19:18- I was actually sick. - And she was sick several times,
0:19:18 > 0:19:20- in a bucket by the stage.- Yeah.
0:19:20 > 0:19:24And then walked on and played beautifully! My life!
0:19:24 > 0:19:26- Her life! So...- The band were looking on!
0:19:26 > 0:19:28The band just couldn't get this together at all,
0:19:28 > 0:19:31and the promoters used to come in just before the gig,
0:19:31 > 0:19:34"Have a wonderful gig," and Barbara was throwing up in a bucket
0:19:34 > 0:19:38and you can imagine this was insane. Anyway, we did the gigs and it all worked fine.
0:19:38 > 0:19:44The question, really, is what are the implications for that kind of thing, wearing a pump?
0:19:44 > 0:19:49We've to take into consideration that you've now had Parkinson's for about 11 years,
0:19:49 > 0:19:51so you're no longer in the so-called "early,"
0:19:51 > 0:19:55or what some people call the "honeymoon", stage of Parkinson's,
0:19:55 > 0:19:58you're in the so-called, "complex" stage of Parkinson's.
0:19:58 > 0:20:02Using Apomorphine is a particularly good option,
0:20:02 > 0:20:06because it will rationalise your oral treatments.
0:20:06 > 0:20:10In spite of everything, you're now having to take several tablets, several times a day.
0:20:10 > 0:20:13For a busy person, that's often quite difficult,
0:20:13 > 0:20:16whereas with the Apomorphine infusion, you just put it on
0:20:16 > 0:20:18in the morning, take it off in the evening.
0:20:18 > 0:20:24- And you could programme the pump to deliver the drug for 12, 16 or 18 hours.- Very interesting.
0:20:24 > 0:20:28And this could address the problems we're having with sleep,
0:20:28 > 0:20:32and when I say, "we", I mean we're still trying to sleep together. It's a bit of a game!
0:20:32 > 0:20:38In fact, it would be over a year before Barbara's new treatment was given the official go-ahead.
0:20:45 > 0:20:49I wrote Smokey Embrace after I got Parkinson's.
0:20:49 > 0:20:53In fact, I did most of my composing after I was diagnosed,
0:20:53 > 0:20:56because I thought I didn't have much time,
0:20:56 > 0:20:57so I felt I must get on with it.
0:20:57 > 0:21:02So in the last ten years, I've killed myself composing!
0:21:25 > 0:21:31Now this is my domain, my own domain, which is very important to me,
0:21:31 > 0:21:33to have a space like this to disappear to.
0:21:33 > 0:21:37Whoever's in the house, I don't know if they're there or not,
0:21:37 > 0:21:39so I can just work away.
0:21:39 > 0:21:41SYNTHESISED VIOLINS AND HORNS PLAY
0:21:49 > 0:21:50The French horns start.
0:21:53 > 0:21:55Because of the difficulty of playing,
0:21:55 > 0:21:59has composition taken over more of your life?
0:21:59 > 0:22:01Erm...definitely.
0:22:03 > 0:22:06I'm really a, sort of, full-time composer.
0:22:06 > 0:22:08Tons of stuff.
0:22:08 > 0:22:10This is The Crossing...
0:22:10 > 0:22:15which is a big orchestral work which I'm trying to write.
0:22:17 > 0:22:19BASS AND PERCUSSION
0:22:19 > 0:22:21I have the controller somewhere...
0:22:23 > 0:22:25Perhaps turn this volume down a bit?
0:22:25 > 0:22:27Oh, I can turn the volume down.
0:22:28 > 0:22:36The Crossing is a symphonic piece based on rush hour in Rome.
0:22:36 > 0:22:40It's one of the most complicated pieces I've ever done.
0:22:40 > 0:22:42So, it's an enormous score.
0:22:42 > 0:22:46Do you think there's a relationship between music and Parkinson's Disease?
0:22:46 > 0:22:52Yeah, it's my escape, because however awful I'm feeling,
0:22:52 > 0:22:54I can listen to something like this, you know,
0:22:54 > 0:22:58and then think about what I'm doing with it, you know.
0:22:58 > 0:23:01I can forget myself, you know...
0:23:01 > 0:23:04and that's, you know, why I'm happy here,
0:23:04 > 0:23:06because I've been in dire straits
0:23:06 > 0:23:08and I've come up here and I've just put on...
0:23:08 > 0:23:12and then, you know, a few hours later, you feel better.
0:23:12 > 0:23:15I really, I mean, John asks me how I'm feeling
0:23:15 > 0:23:20and I don't like him doing that, cos I don't want to be reminded.
0:23:20 > 0:23:25You know, I just want to get on with things as normally as possible
0:23:25 > 0:23:27and be creative.
0:23:38 > 0:23:41Has your experience been that people who are...
0:23:41 > 0:23:44let's say, obsessive, or driven,
0:23:44 > 0:23:47or who have a cause in life, or a vision,
0:23:47 > 0:23:49something they want to achieve,
0:23:49 > 0:23:53do you find they cope better with Parkinson's?
0:23:53 > 0:23:57Those personalities are more prone to develop Parkinson's.
0:23:57 > 0:24:03People who are very driven, often very obsessional...
0:24:03 > 0:24:08they have a higher rate than normal of developing Parkinson's.
0:24:08 > 0:24:13As a result, you're quite right, they are more likely also to cope with it better.
0:24:15 > 0:24:18And, paradoxically, now we also know
0:24:18 > 0:24:22that some of the drugs might actually, again, unmask those obsessional features.
0:24:22 > 0:24:25So, it's a very complex issue,
0:24:25 > 0:24:28how the whole personality interacts
0:24:28 > 0:24:34with what is otherwise, broadly thought to be largely a motor syndrome,
0:24:34 > 0:24:37where you have slowness, stiffness, difficulty with performing.
0:24:37 > 0:24:41So, in a way, this is genetically written.
0:24:41 > 0:24:46Her obsession since she was a young girl, with playing and performing and driving herself forward,
0:24:46 > 0:24:50becoming one of the few lady saxophone successful players in the world,
0:24:50 > 0:24:53- this has all, in a way, been written in the books...- Yeah.
0:24:53 > 0:24:56..to lead to something exactly like this?
0:24:56 > 0:24:58It's all your fault!
0:24:58 > 0:25:01THEY LAUGH
0:25:01 > 0:25:04I love actually writing music, that is no problem.
0:25:04 > 0:25:07What the problem is sorting it out...
0:25:07 > 0:25:09SHE CHUCKLES
0:25:09 > 0:25:11..so that other people can play it!
0:25:11 > 0:25:14OK, so, we'll do that and we'll go from...
0:25:14 > 0:25:17An improvising multi-instrumentalist,
0:25:17 > 0:25:23Barbara has also composed orchestral, choral and chamber works for classical musicians.
0:25:32 > 0:25:36Me, I don't write my music. It writes itself, you know.
0:25:36 > 0:25:40I'm just the medium through which it passes.
0:25:43 > 0:25:49I'm trying to show the saxophone off as well as it can be shown,
0:25:49 > 0:25:52the things that it excels at.
0:25:55 > 0:26:01It helps a lot to have first-hand knowledge of instruments when you write for them.
0:26:01 > 0:26:04I know what the instruments can do.
0:26:06 > 0:26:08It's such a versatile instrument,
0:26:08 > 0:26:12that you can write lots of different effects.
0:26:12 > 0:26:15They can sound like bells they can...growl,
0:26:15 > 0:26:17they can shriek.
0:26:28 > 0:26:33As a saxophonist you must be a tough audience for students to play to?
0:26:33 > 0:26:35When they realise that I'm on their side
0:26:35 > 0:26:40and all I want to do is make them sound as good as possible.
0:26:40 > 0:26:43I'm not there to tear them down.
0:26:54 > 0:26:58This was the recording of the Tuba Concerto with Foden's Brass Band,
0:26:58 > 0:27:00one of the top brass bands in the country,
0:27:00 > 0:27:06and James Gourlay, who is one of the world's foremost tuba players.
0:27:16 > 0:27:18- HE LAUGHS - James! Scary!
0:27:20 > 0:27:23'Barbara's music is really challenging'
0:27:23 > 0:27:27because it's about the hardest thing written for the tuba ever,
0:27:27 > 0:27:31because the lines are very much like saxophone lines,
0:27:31 > 0:27:33but a challenge should always be met.
0:27:33 > 0:27:35This whole album features the tuba.
0:27:35 > 0:27:41It's a very unusual album and...
0:27:41 > 0:27:44I've written a duet.
0:27:50 > 0:27:57They do multi-phonics. You know, they do chords as well, and harmonics.
0:28:16 > 0:28:21'And because I'm not, you know, a brass player, I don't write for it.'
0:28:21 > 0:28:26You know, it's something different in the way that they're used to.
0:28:26 > 0:28:28This final part is where they go into a rhythm
0:28:28 > 0:28:31and they really, they played it beautifully.
0:28:33 > 0:28:37Yes, they go into a sort of groove, which is nice.
0:28:55 > 0:28:57- JAMES:- I think it's in its own language,
0:28:57 > 0:29:02which is in a place between jazz and classical.
0:29:02 > 0:29:07You have to play it in a classical way, almost a straight way,
0:29:07 > 0:29:11but at the same time, you can't ignore the jazz influences there,
0:29:11 > 0:29:15particularly when you're articulating phrases.
0:29:15 > 0:29:17Why Double Trouble?
0:29:17 > 0:29:20Well, they said they should be called Triple Trouble! SHE LAUGHS
0:29:20 > 0:29:22And Quadruple Trouble they said!
0:29:22 > 0:29:26It should be called Quintuple Trouble, not Double Trouble!
0:29:26 > 0:29:31I think it's an insult to his worthiness not to give him a challenge.
0:29:31 > 0:29:33It's too high and too hard,
0:29:33 > 0:29:37and we can just barely get through without falling down.
0:29:42 > 0:29:45'I write quite a lot of stuff, these days, for other people
0:29:45 > 0:29:48'because the medication that I have to take
0:29:48 > 0:29:54'makes it increasingly difficult for me to guarantee being on the stage at a certain time.'
0:29:59 > 0:30:04'I can't put my right foot on stage, I feel like I'm going to fall over.'
0:30:04 > 0:30:06So you feel like you're falling all the time?
0:30:06 > 0:30:08I feel like I'm going to fall over.
0:30:08 > 0:30:11I feel very precarious.
0:30:11 > 0:30:12You're down at the moment?
0:30:12 > 0:30:15Yeah, I'm very... I'm halfway down and halfway up.
0:30:15 > 0:30:19I took a tablet at 6.25...
0:30:19 > 0:30:22and I've been on a downer since then.
0:30:24 > 0:30:28I have to work out when I should take one before we go on stage,
0:30:28 > 0:30:31but I'm not sure when we're going on stage.
0:30:31 > 0:30:34I've taken a strong one now, but I'm...well, stronger
0:30:34 > 0:30:36but I will take a weak one before I go on stage,
0:30:36 > 0:30:39otherwise I will be having too much movement
0:30:39 > 0:30:41and I won't be able to hold the saxophone.
0:30:41 > 0:30:43Still...
0:30:43 > 0:30:45who am I to complain?
0:30:45 > 0:30:48THEY LAUGH
0:32:08 > 0:32:12There are certain things that when you've done it all your life, like playing tennis,
0:32:12 > 0:32:16I can still play the shots that I have always played
0:32:16 > 0:32:20and the same with table tennis cos, you know, it's an automatic reaction.
0:32:22 > 0:32:25'And it's the same playing an instrument.'
0:32:27 > 0:32:31It's not logical that you should be able to do them, really,
0:32:31 > 0:32:37but I think sport and music is, sort of...exceptional,
0:32:37 > 0:32:39the effect it has on you.
0:32:39 > 0:32:42That's why PD sufferers should do as much as possible of both
0:32:42 > 0:32:47cos, you know, frankly, though I'm knackered, I enjoy this.
0:32:53 > 0:32:56'When I'm swimming, I can feel what is wrong with me.
0:32:56 > 0:33:01'I can feel the weakness where there never used to be weakness.
0:33:01 > 0:33:06'I find it's a good monitor, and it's great to feel free as well
0:33:06 > 0:33:10'because the thing about Parkinson's is that you feel very heavy a lot of the time.'
0:33:10 > 0:33:16There is certainly a very strong emotional, or motivational, element
0:33:16 > 0:33:20to the whole issue of the motor expression of Parkinson's
0:33:20 > 0:33:22and it's this area that's fascinating
0:33:22 > 0:33:24and that we are really learning about at the moment.
0:33:24 > 0:33:30So, music itself, do you think has a beneficial effect upon Parkinson's sufferers?
0:33:30 > 0:33:36Well, it certainly would reduce many of the other stress related...
0:33:36 > 0:33:39or rather "stressors", of the condition.
0:33:39 > 0:33:42OK, you ready, everybody? Alles klar? Right.
0:33:42 > 0:33:46- Jawohl, mein Herr! - A one, a two, a one, two, three...
0:33:53 > 0:33:57# I got blues in the morning Blue pills, reds and whites
0:33:59 > 0:34:04# I got blues in the morning Blue pills, reds and whites
0:34:06 > 0:34:07# They get me through my days
0:34:07 > 0:34:11# And they get me through my nights... #
0:34:14 > 0:34:18Leading the choir is the dynamic jazz singer Carol Grimes
0:34:18 > 0:34:23and the sardonic blues they're singing is about Parkinson's
0:34:23 > 0:34:25and written by choir member George Foster.
0:34:25 > 0:34:30# Good morning pills Pills, what do you do?
0:34:32 > 0:34:37# Good morning pills Pills, what do you do?
0:34:38 > 0:34:43# You help my shakes But you have side effects, too
0:34:45 > 0:34:46# You make me
0:34:46 > 0:34:49# Shake, rattle, when I walk... #
0:34:49 > 0:34:51When you engage your mind in something
0:34:51 > 0:34:56that you are very at home in doing, music for instance,
0:34:56 > 0:34:59it might actually have a beneficial effect
0:34:59 > 0:35:01on some of the Parkinson's symptoms.
0:35:01 > 0:35:08Anything that you have a high intensity of mental input to,
0:35:08 > 0:35:12often has an interesting beneficial effect
0:35:12 > 0:35:14on the motor problems of Parkinson's.
0:35:14 > 0:35:17So, for instance...
0:35:17 > 0:35:21many people with tremor, it may not come out normally,
0:35:21 > 0:35:25but when you ask the person to mentally exercise,
0:35:25 > 0:35:27do dual tasking, the tremor will come out.
0:35:27 > 0:35:31There are these mysteries about Parkinson's.
0:35:31 > 0:35:36Just the whole concept of how, you know, your hobbies
0:35:36 > 0:35:38and how your passion for doing things,
0:35:38 > 0:35:42how it affects the motor expression is a really fascinating one,
0:35:42 > 0:35:46and one that we do not know, really, much about.
0:35:46 > 0:35:50# Oh L- Dopa I've saved you till last
0:35:53 > 0:35:57# Oh L- Dopa I've saved you till last
0:36:00 > 0:36:03# To give me a rhyme For Diss-kine-easy-ass
0:36:05 > 0:36:09# Cos I got a dis-regulated brain
0:36:09 > 0:36:12# Driving me insane
0:36:13 > 0:36:16# Dis-regulated brain
0:36:16 > 0:36:19# Driving me insane
0:36:19 > 0:36:22# I'll tell you what I mean
0:36:22 > 0:36:26# I got those Dopamine
0:36:26 > 0:36:29# Disregulation
0:36:29 > 0:36:34# Syndrome blues...
0:36:37 > 0:36:43# And bright orange pee-eee-ee, yeah! #
0:36:43 > 0:36:46Whoa! THEY CHEER AND APPLAUD
0:36:46 > 0:36:49I mean, it beggars belief that you could have an evening
0:36:49 > 0:36:54of the most amazing entertainment, courtesy of this wretched disease
0:36:54 > 0:36:57but, at the same time, buoyed up by the courage
0:36:57 > 0:36:59and the amazing fortitude...
0:36:59 > 0:37:04and, sort of, desire to conquer by the people who have it.
0:37:08 > 0:37:12In 2005, at the Oxford Playhouse,
0:37:12 > 0:37:15Barbara took part in a Parkinson's benefit event,
0:37:15 > 0:37:18hosted by Jon Snow and Libby Purvis.
0:37:18 > 0:37:20- Well, Barbara! - APPLAUSE
0:37:25 > 0:37:29Now, there was a terrible rumour going around several years ago, in the jazz world,
0:37:29 > 0:37:31that you had, in fact, retired from touring,
0:37:31 > 0:37:34because you were not well enough to play. Who put this about?
0:37:34 > 0:37:35BARBARA LAUGHS
0:37:35 > 0:37:39Well, it was partly my fault, because I decided to do a farewell tour
0:37:39 > 0:37:42and that's always fatal! LAUGHTER
0:37:42 > 0:37:45Has the music actually physically helped you?
0:37:45 > 0:37:46I think it does.
0:37:46 > 0:37:50I think anything where you forget what you are and who you are,
0:37:50 > 0:37:53and just go with the rhythm is going to help you.
0:38:09 > 0:38:11APPLAUSE AND CHEERING
0:38:11 > 0:38:16But how about playing for Parkinson's Awareness events?
0:38:16 > 0:38:19Yeah, I'm happy to do that.
0:38:19 > 0:38:24I mean, that's a good cause and I'm hoping to do some more of that.
0:38:24 > 0:38:27When... As you can see, I'm in a mess here!
0:38:27 > 0:38:28When I've got myself sorted out,
0:38:28 > 0:38:33in the autumn, I want to get on and write this piece for Tom Isaacs.
0:38:33 > 0:38:34# That's life
0:38:34 > 0:38:39# No, I can't deny it
0:38:39 > 0:38:42# We Parkies need help
0:38:42 > 0:38:44# And you can supply it
0:38:44 > 0:38:48# It's been 11 years of shaking I've endured
0:38:53 > 0:38:57# Now I feel it's time
0:38:57 > 0:38:59# It's time
0:38:59 > 0:39:03# To be cured. #
0:39:03 > 0:39:05APPLAUSE AND CHEERING
0:39:05 > 0:39:07Diagnosed in his twenties,
0:39:07 > 0:39:10Tom Isaacs wrote a book about his marathon walk around Britain
0:39:10 > 0:39:14to raise public awareness of Parkinson's.
0:39:14 > 0:39:18And Barbara has now joined his campaign for a cure.
0:39:18 > 0:39:22We're both trying to get on and do things and not let it,
0:39:22 > 0:39:24you know, not give up, really.
0:39:24 > 0:39:27We're both fighting, fighting is the word,
0:39:27 > 0:39:29we're fighters in arms together.
0:39:29 > 0:39:31- Oop!- Oh!
0:39:32 > 0:39:36We're not one for big rallies, it's all or nothing, isn't it!
0:39:38 > 0:39:39- Ah!- Eight-ten.
0:39:39 > 0:39:44'What are the chances of an international jazz musician,
0:39:44 > 0:39:48'saxophonist, and a chartered surveyor from Watford getting together?
0:39:48 > 0:39:50'You know, in a strange way,
0:39:50 > 0:39:53Parkinson's is bringing people like us together,
0:39:53 > 0:39:54which is great.'
0:39:56 > 0:39:59When one Parkie's person goes dyskinetic,
0:39:59 > 0:40:01the other person does usually, as well.
0:40:01 > 0:40:05- And you said that was Billy Joel. - It is, a Billy Joel song,
0:40:05 > 0:40:08- it's a song that I quite liked when I was younger- Ah.
0:40:08 > 0:40:11Cos it was...all about
0:40:11 > 0:40:13how women are.
0:40:13 > 0:40:16Oh right. SHE LAUGHS
0:40:16 > 0:40:19And now it's how Parkinson's...
0:40:19 > 0:40:24- How Parkinson's is, yeah, it is kind of the banes of my life!- Yes.
0:40:24 > 0:40:26Are you ready down there, then?
0:40:33 > 0:40:39# To the fridge in the morning I reach for my juice
0:40:40 > 0:40:46# There's a sign on the top Says "Shake well before use"
0:40:46 > 0:40:51# But I don't need instructions I have expertise
0:40:51 > 0:40:59# Completely superfluous message With Parkie's disease
0:40:59 > 0:41:04# My shaving blade's waving around Like a hurricane
0:41:04 > 0:41:10# It's a bit like the Texas Chainsaw Bathroom Massacre
0:41:10 > 0:41:15# My electric toothbrush It needs no batteries
0:41:15 > 0:41:21# I don't need power Cos I've got the Parkie's disease
0:41:23 > 0:41:28# One thing with this Parkie's Of which I am sure
0:41:28 > 0:41:31# That right now the science is out there
0:41:31 > 0:41:34# To lead us to a cure. #
0:41:40 > 0:41:45A lot of your lyrics finish with this up-vision, Tom,
0:41:45 > 0:41:47about hope for an actual cure.
0:41:47 > 0:41:50When Barbara was first diagnosed, the first thing was,
0:41:50 > 0:41:53"In three, four years, five years, there'll be a fix,"
0:41:53 > 0:41:54and, of course, it was a fantasy.
0:41:54 > 0:41:58I was told it was going to be five years and, 15 years on, here we are,
0:41:58 > 0:42:03and yet, there is enormous hope out there. The problem lies...
0:42:03 > 0:42:05I think the cure is a process.
0:42:05 > 0:42:08I don't see it as a fixed single event,
0:42:08 > 0:42:11that one day we're all going to have Parkinson's,
0:42:11 > 0:42:13the next day it will have gone magically.
0:42:13 > 0:42:17It's not going to happen like that. It'll be a step by step process.
0:42:17 > 0:42:21A lot of the onus is on us, the patients, to make more of a play,
0:42:21 > 0:42:26to get more involved in the scientific process, to...
0:42:26 > 0:42:27Encourage.
0:42:27 > 0:42:31..to encourage and to really hit home what this condition's all about
0:42:31 > 0:42:35and I think if we do that, then everything will be accelerated.
0:42:36 > 0:42:39'Right, I've had Parkinson's for 14 years'
0:42:39 > 0:42:42and since then, I've turned my attention to telling people
0:42:42 > 0:42:45what Parkinson's is all about, to make people understand it.
0:42:45 > 0:42:47Cos how can anyone even hope to treat Parkinson's
0:42:47 > 0:42:50without having knowledge of what it's like to have it?
0:42:50 > 0:42:52'I don't have to use my fingers so much,'
0:42:52 > 0:42:54I don't have to write, or play saxophone.
0:42:54 > 0:42:57All I need to do is to be able to speak to people
0:42:57 > 0:43:01'and communication is all-important to me.'
0:43:01 > 0:43:05As you all know, there is no known cure for Parkinson's,
0:43:05 > 0:43:08and although it doesn't kill you, it is a life sentence.
0:43:08 > 0:43:11Parkinson's challenges everything in life that is taken for granted,
0:43:11 > 0:43:13there is no respite.
0:43:13 > 0:43:16That's the challenge in Parkinson's
0:43:16 > 0:43:19and that's why the work you are doing here at Oxford Bio Medica
0:43:19 > 0:43:23is so important. Your product ProSavin is very exciting.
0:43:23 > 0:43:27I didn't get paid to say that. I mean it. It really is.
0:43:27 > 0:43:29There's things called growth factors,
0:43:29 > 0:43:33which basically have been shown to re-grow the cells in the brain,
0:43:33 > 0:43:35re-grow the networking in the brain that's lost.
0:43:35 > 0:43:39But the problem is how we deliver it into the body and into the brain
0:43:39 > 0:43:43so that it can work its wonders.
0:43:43 > 0:43:45'There is all sorts of research going on
0:43:45 > 0:43:48in Bristol, Holland, and the States,
0:43:48 > 0:43:50'and we're getting there, you know.
0:43:50 > 0:43:54'We're getting into the realms of delivering this molecule.'
0:43:54 > 0:43:57Another form of treatment is a surgical procedure,
0:43:57 > 0:44:00known as deep brain stimulation.
0:44:00 > 0:44:03Although apprehensive of invasive brain surgery,
0:44:03 > 0:44:06Barbara and Jon went to find out about it
0:44:06 > 0:44:08from its foremost UK practitioner.
0:44:08 > 0:44:10We're passing a wire into the brain
0:44:10 > 0:44:12and passing a wire in the brain
0:44:12 > 0:44:16has an intrinsic risk of haemorrhage,
0:44:16 > 0:44:18causing a stroke or death.
0:44:18 > 0:44:21But it's also true that no surgery
0:44:21 > 0:44:24I do is entirely safe, I'm a neurosurgeon.
0:44:24 > 0:44:27- Well, nothing's safe, anyway.- No.
0:44:27 > 0:44:32- But it's safer than most procedures. - Right, yeah.
0:44:32 > 0:44:36- Well what are we seeing there? - Well, basically a plain X-Ray
0:44:36 > 0:44:38of a patient's front.
0:44:38 > 0:44:42Side, front and top
0:44:42 > 0:44:44You can see that the cables are coiled under the scalp
0:44:44 > 0:44:47and the electrodes are going in
0:44:47 > 0:44:51to the target deep in the brain, all right. You can see?
0:44:51 > 0:44:53And this is from the top
0:44:53 > 0:44:56and you can see the cables under the skin that we'll be hooking up
0:44:56 > 0:45:00to pass under the skin to go to the pacemaker.
0:45:00 > 0:45:04I'm still interested in keeping my musical career going...
0:45:04 > 0:45:06- Sure. Sure.- ..for myself.
0:45:06 > 0:45:11So what do you find, when you treat people who use their hands
0:45:11 > 0:45:13with what they're doing,
0:45:13 > 0:45:17can they actually get back to what they were doing before Parkinson's?
0:45:17 > 0:45:21Yes, if you were to be admitted to our unit
0:45:21 > 0:45:24we would do a scan of your brain,
0:45:24 > 0:45:28to look at the various targets we would like to implant
0:45:28 > 0:45:30and then it would be possible
0:45:30 > 0:45:32for us to give you a fairly accurate prediction
0:45:32 > 0:45:35of how well you'd be after surgery.
0:45:35 > 0:45:38And deep brain stimulation
0:45:38 > 0:45:41has allowed musicians to go back to work.
0:45:41 > 0:45:44In the right people, done by experienced surgeons,
0:45:44 > 0:45:46I think it's a marvellous procedure.
0:45:47 > 0:45:51Now this is how the operation is done, you see.
0:45:51 > 0:45:54This is a patient with a tremulous Parkinson's disease,
0:45:54 > 0:45:56- you can see he's wide awake...- Yeah.
0:45:56 > 0:45:59..and he's got this frame bolted to his head
0:45:59 > 0:46:02and he's just had a scan to map out the sub-polaric nucleus.
0:46:02 > 0:46:05And if you see this hand, you see its tremors
0:46:05 > 0:46:09and if you watch that hand as we turn the current on,
0:46:09 > 0:46:12you'll see the tremor disappear.
0:46:12 > 0:46:14There it is, look.
0:46:14 > 0:46:17Then my neurologist will examine him...
0:46:18 > 0:46:20Then you'll see it's rock steady.
0:46:23 > 0:46:27There it is, you can see the rigidity,
0:46:27 > 0:46:29the stiffness, has completely gone.
0:46:29 > 0:46:31Extraordinary.
0:46:31 > 0:46:34And then we do it for the other side
0:46:34 > 0:46:37and with everything going well,
0:46:37 > 0:46:39the patient is put to sleep
0:46:39 > 0:46:43and the connecting cables are run from the deep brain electrodes,
0:46:43 > 0:46:46behind the ear under the skin, to a pacemaker
0:46:46 > 0:46:51that we can put under the skin either in the chest
0:46:51 > 0:46:53- or in the abdomen.- Right.
0:46:53 > 0:46:57- Have you any that have had it done say 15 years ago...- Yes, yes.
0:46:57 > 0:46:59..and it's still working fine?
0:46:59 > 0:47:03Well yes, what happens is that surgery is dramatic
0:47:03 > 0:47:08at alleviating the symptoms that we choose to alleviate, you see,
0:47:08 > 0:47:13but, with time, Parkinson's develops other symptoms that don't respond,
0:47:13 > 0:47:16like they can hyper-salivate,
0:47:16 > 0:47:20you see they can develop sleep disorders.
0:47:20 > 0:47:22They can develop bowel problems.
0:47:22 > 0:47:25Some of them can become
0:47:25 > 0:47:28cognitively impaired, you see.
0:47:28 > 0:47:30Those aspects of Parkinson's disease
0:47:30 > 0:47:33are not stopped by deep brain stimulation or anything else.
0:47:33 > 0:47:37What do you think the long term chances
0:47:37 > 0:47:42of a real fix coming in the next, say 15 years?
0:47:42 > 0:47:46Parkinson's disease, being a multi-faceted disease,
0:47:46 > 0:47:50I would find it hard to believe that one would find a cure for it,
0:47:50 > 0:47:54but something that slows its progression is probable.
0:47:55 > 0:47:57Right.
0:47:57 > 0:48:00As a drug, rather than a...?
0:48:00 > 0:48:03It could be reparative,
0:48:03 > 0:48:08repairing the loss of dopamine cells in the brain.
0:48:08 > 0:48:11So this could be the famous stem cell syndrome?
0:48:11 > 0:48:16Yes, a sort of stem cell, yeah, whatever variety is used.
0:48:16 > 0:48:19There are still quite a lot of problems to be sorted out with it
0:48:19 > 0:48:22before it becomes a clinical reality.
0:48:22 > 0:48:24A stem cell therapy, I believe,
0:48:24 > 0:48:29would be a possible therapy in about 15 years.
0:48:36 > 0:48:41Has what you heard changed your mind about deep brain surgery?
0:48:41 > 0:48:42'It's fascinating,
0:48:42 > 0:48:45'but I still don't like the idea for myself.
0:48:45 > 0:48:50'It may work for some people but for me, it's the last resort.'
0:49:00 > 0:49:04This is A Slow Tango and it's one of the darkest pieces that we play.
0:49:41 > 0:49:46One of the great inventions of the, over the last century...
0:49:46 > 0:49:47To make his life easier,
0:49:47 > 0:49:50Barbara's fellow sufferer, Bill Worrall,
0:49:50 > 0:49:54has invented ingenious personal solutions to simple problems,
0:49:54 > 0:49:56like holding a phone...
0:49:56 > 0:49:58A bit of Velcro on your cap
0:49:58 > 0:50:02- and Velcro on your phone... - JON LAUGHS
0:50:02 > 0:50:07and there we have one solution.
0:50:07 > 0:50:09That's just absolutely great, Bill!
0:50:09 > 0:50:11Absolutely perfect, mate...
0:50:11 > 0:50:14..or watching TV while lying down.
0:50:14 > 0:50:16So, I lie down on the floor and watch it in a mirror,
0:50:16 > 0:50:19a mirror view, as it were.
0:50:19 > 0:50:22At the same time, the unbearable experience
0:50:22 > 0:50:26of living with Parkinson's can lead to a desperate search
0:50:26 > 0:50:28for alternative, quasi-medical, magic cures.
0:50:28 > 0:50:32The last time we met, you and Barbara had just been to Spain.
0:50:32 > 0:50:33Yeah.
0:50:33 > 0:50:38Now, you'd been to Spain to have these little tiny titanium needles
0:50:38 > 0:50:40- implanted in your ears.- Yeah.
0:50:40 > 0:50:43By a man who charged you an awful lot of money to do this.
0:50:43 > 0:50:45The chap said to Barbara, when he was doing you,
0:50:45 > 0:50:48"Don't worry. I'll do you this afternoon,"
0:50:48 > 0:50:50- and Barbara didn't have it done. - Yes.
0:50:50 > 0:50:54So I'm very interested to know what has happened in the interim?
0:50:54 > 0:50:57Well, the simple answer is things have got a lot worse.
0:50:57 > 0:51:00How long did it take to start feeling worse?
0:51:00 > 0:51:02Well, it's been gradual,
0:51:02 > 0:51:06but it certainly was several months
0:51:06 > 0:51:09before it was quite as obvious
0:51:09 > 0:51:12as it has been recently.
0:51:12 > 0:51:15So, I mean I've basically got about 56 in each ear. You can feel it.
0:51:15 > 0:51:18So on the outside here, yes...
0:51:18 > 0:51:20Right, yes, yes, so, on the outside here
0:51:20 > 0:51:23- all the way down towards the lobe...- Yeah.
0:51:23 > 0:51:26..you've got 56 little titanium needles, in each ear,
0:51:26 > 0:51:28- implanted under the skin?- Yeah.
0:51:28 > 0:51:31And you paid how much for this?
0:51:31 > 0:51:34It was about seven grand.
0:51:34 > 0:51:38Just literally, like with a clicker, you put one in and you go "Click!"
0:51:40 > 0:51:42It was a bit of a shot in the dark.
0:51:42 > 0:51:47I mean, obviously, financially, it was a lot of money,
0:51:47 > 0:51:50but the thing that attracted me to it, other than that,
0:51:50 > 0:51:52was it was fairly non-invasive.
0:51:52 > 0:51:54If nothing happens, the only thing
0:51:54 > 0:51:56there'll be is a dent in my bank balance.
0:51:56 > 0:51:59You've only got to keep an eye on Michael J Fox,
0:51:59 > 0:52:02- cos if there's a cure, he'll have it. - He's first in line!
0:52:02 > 0:52:05Well, it's the same with Muhammad Ali, isn't it?
0:52:05 > 0:52:06Yeah, sure, sure.
0:52:06 > 0:52:10- If people with that amount of money haven't found it, then...- Exactly.
0:52:10 > 0:52:14- ..what chance for the likes of us? - Exactly, exactly.
0:52:26 > 0:52:30'When I play a ballad, I'm actually singing.
0:52:30 > 0:52:34'I'm playing an instrument but I am singing words in my...
0:52:34 > 0:52:36'You know, there's a meaning to it.
0:52:36 > 0:52:40'Nightwatch is very lonely. She is by herself.'
0:52:40 > 0:52:44You know, I just imagine when I'm playing that she's there.
0:52:44 > 0:52:47She's trying to stay awake, you know, it's late.
0:52:55 > 0:52:59During this gig at Ronnie Scott's, Barbara's L-dopa tablets
0:52:59 > 0:53:02were inducing movements that made it difficult for her to hold
0:53:02 > 0:53:06the saxophone steady in her mouth.
0:53:06 > 0:53:10Unless she could change to the recommended new apomorphine treatment,
0:53:10 > 0:53:14Barbara realised she'd no longer be able to play in public.
0:53:43 > 0:53:45I'm feeling totally dead.
0:53:47 > 0:53:49- You're feeling totally dead?- Yeah.
0:53:51 > 0:53:54I don't know whether I can move anything.
0:53:54 > 0:53:57How could you possibly have played the way you played last night?
0:53:59 > 0:54:03I don't know. I've got to get up now.
0:54:03 > 0:54:04I've got to get up.
0:54:10 > 0:54:12Let's see if it makes you think about yourself.
0:54:21 > 0:54:22Oh.
0:54:22 > 0:54:28When I'm actually...not up,
0:54:28 > 0:54:30I sometimes strain my right hand,
0:54:30 > 0:54:32by doing things with it which I shouldn't be doing.
0:54:32 > 0:54:35It's twice the size of my left one.
0:54:37 > 0:54:42- Do you ever see things that are not there?- Oh, yeah, all the time.
0:54:42 > 0:54:45But actually, it is there,
0:54:45 > 0:54:50but it's shapes of things, of something else.
0:54:50 > 0:54:54For example, when I got out of bed at three o'clock this morning
0:54:54 > 0:54:57there was a big individual just by me
0:54:57 > 0:54:59in a sort of cap, very tall.
0:54:59 > 0:55:02Welcome to the world of Parkinson's!
0:55:02 > 0:55:05Yeah, but are they there and we don't see them?
0:55:05 > 0:55:08With other patients, you get a whole film set outside.
0:55:08 > 0:55:11They call the police, cos they haven't asked permission to film
0:55:11 > 0:55:14- and so on.- Oh, really?- Yeah, you often get this behaviour
0:55:14 > 0:55:15as Parkinson's advances on.
0:55:15 > 0:55:18Barbara thinks there's a film crew in here with us now!
0:55:18 > 0:55:21There's a surprise!
0:55:21 > 0:55:23So, we're all having hallucinations!
0:55:23 > 0:55:25LAUGHTER
0:55:25 > 0:55:28Mike. Mike!
0:55:28 > 0:55:30Mike? Mike's not here, darling.
0:55:30 > 0:55:34Can you help me up in a sitting position, please?
0:55:34 > 0:55:38- I feel sick.- Oh, yeah?- Yeah.
0:55:38 > 0:55:40- I need to be helped.- I'll get you up.
0:55:40 > 0:55:44I'm...I'm paralysed now. I can't move.
0:55:44 > 0:55:46Oh, that pain on my side.
0:55:49 > 0:55:50Come on.
0:55:52 > 0:55:54- Come on.- What are you doing?
0:55:57 > 0:55:58- Come on.- Hold on a minute.
0:56:03 > 0:56:07'Sometimes she can stand at the window and tell me what's going on
0:56:07 > 0:56:10and of course there's nothing going on outside the window.
0:56:10 > 0:56:11We know it and we talk about it.
0:56:11 > 0:56:14- It's like a waking dream for Barbara.- Sure.
0:56:14 > 0:56:17We're assuming, at the moment, there's nothing to worry about.
0:56:17 > 0:56:21Again, these sound, to me, like hallucinations...
0:56:21 > 0:56:24and the so-called benign hallucinations
0:56:24 > 0:56:27- will give us insight about it. - Yeah, I don't worry about it.
0:56:27 > 0:56:32When they become scary, when they become troublesome,
0:56:32 > 0:56:34when they intrude on your personality,
0:56:34 > 0:56:37when they make you behave in an irrational manner,
0:56:37 > 0:56:40that's when, really, we need to probably think about it.
0:56:40 > 0:56:43We do know that hallucinations,
0:56:43 > 0:56:45delusions, paranoia, etc.
0:56:45 > 0:56:48are all, CAN all be caused by dopamine agonists.
0:56:50 > 0:56:51You ready? Here we go.
0:56:53 > 0:56:55- Oh darling.- Oh!
0:56:55 > 0:56:58- What's up, huh?- Oh, oh.
0:57:00 > 0:57:02Oh.
0:57:02 > 0:57:05Sometimes I think I'll never walk again.
0:57:05 > 0:57:06- (There we go.)- God.
0:57:06 > 0:57:08SINGING:
0:57:25 > 0:57:29'I wrote this piece and recorded it with Big Sky
0:57:29 > 0:57:32'for the Norwich Community Choir.
0:57:32 > 0:57:34'I think most of my music is based
0:57:34 > 0:57:37'on either universal truths
0:57:37 > 0:57:40'or images of everyday life.
0:57:42 > 0:57:46'Writing choral music, you have to be careful
0:57:46 > 0:57:48to match the music to words,
0:57:48 > 0:57:53'and when I chose a poet for my work, Journey,
0:57:53 > 0:57:54I had to search...
0:57:56 > 0:57:59'..and I found Tagore.
0:57:59 > 0:58:03'He was the answer to my prayers.'
0:58:03 > 0:58:07I found a lot of the poems very close to the home truths
0:58:07 > 0:58:10of what we are and what we are about,
0:58:10 > 0:58:14and the fact that we are on a journey through life,
0:58:14 > 0:58:17and that the destination
0:58:17 > 0:58:21is least where you think it is.
0:59:00 > 0:59:05Months went by, as arguments took place about which health authority
0:59:05 > 0:59:09would provide Barbara's new Apomorphine treatment.
0:59:09 > 0:59:12The problem started over a year ago now,
0:59:12 > 0:59:15when Ray Chaudhuri, the specialist, recommended she go on this drug.
0:59:15 > 0:59:19We're a year away now and we still haven't got it.
0:59:19 > 0:59:22I wrote to the MP, claiming that,
0:59:22 > 0:59:24in fact, she wasn't getting this
0:59:24 > 0:59:26because they couldn't make up their mind
0:59:26 > 0:59:28who was going to pay for it.
0:59:28 > 0:59:32When somebody like Barbara, 12 years into Parkinson's,
0:59:32 > 0:59:37needs a serious drug that's going to be very expensive,
0:59:37 > 0:59:38then, at the end of the day,
0:59:38 > 0:59:41somebody's got to be made to pay for this
0:59:41 > 0:59:44and I believe the problem is about funding
0:59:44 > 0:59:47and it's being hidden in this euphemistic phrase,
0:59:47 > 0:59:49"shared care guidelines".
0:59:49 > 0:59:53Work is waiting for us, but work, of course, has to be fixed up
0:59:53 > 0:59:54six or nine months ahead
0:59:54 > 0:59:57and, until we can get some sense of what Apomorphine will do for her,
0:59:57 > 1:00:00we are caught like rats in a trap here, unable to work,
1:00:00 > 1:00:05with all the people that would normally be working with us unable to work, either.
1:00:05 > 1:00:07At last, in November 2009,
1:00:07 > 1:00:11the funding issues were resolved.
1:00:11 > 1:00:16So, we're a year after Ray first suggested this
1:00:16 > 1:00:18and six months after you did the challenge.
1:00:18 > 1:00:21I don't want to experience what you two have been through.
1:00:21 > 1:00:23Somehow, it's all come together in a week.
1:00:23 > 1:00:26- So, you have your pump ready?- Yes.
1:00:26 > 1:00:30At the moment, it's set at 0.3 and your bonus is 0.3.
1:00:30 > 1:00:33- Right.- This is your bonus but we'll go through all this
1:00:33 > 1:00:35once I've switched you on. It's pointless going over this
1:00:35 > 1:00:38- when your brain's not totally switched on.- That's right!
1:00:38 > 1:00:42It's a waste of time, so we're better off doing it when you're actually on.
1:00:42 > 1:00:45Let's now run you through and you're all ready to go.
1:00:45 > 1:00:48So, this is your big moment.
1:00:48 > 1:00:49Right.
1:00:50 > 1:00:53- Going to go into your tummy. - Yeah, whatever you want.
1:00:56 > 1:00:59I'll show you, if you watch carefully.
1:01:03 > 1:01:06Done. That's it. Simple as that.
1:01:06 > 1:01:07Hold on to your pump.
1:01:12 > 1:01:14OK, let it go for me.
1:01:19 > 1:01:22And that's all set now, to run.
1:01:23 > 1:01:26- Right.- OK, that's you up and running.
1:01:29 > 1:01:32- Not so bad, huh? - No. You can do that, can't you?
1:01:32 > 1:01:34Yeah, sure. No probs, darling.
1:01:36 > 1:01:39So, how do you feel?
1:01:39 > 1:01:40I don't know.
1:01:41 > 1:01:43It's tiny what's going in.
1:01:43 > 1:01:45This is bypassing your gut.
1:01:45 > 1:01:47It's going straight into your system, subcutaneous,
1:01:47 > 1:01:51into the brain, and gently working on the receptors, to switch them on.
1:01:51 > 1:01:54And it's not being interfered with by food and drink.
1:01:54 > 1:01:57- No, it's not.- The tablets are, and that is what's bringing
1:01:57 > 1:02:01- all this uncertainty into it when you take tablets.- Yes.
1:02:17 > 1:02:20- I'm getting taller.- Yeah, you're straightening up nicely now.
1:02:20 > 1:02:23Let's have a look at your hand movements.
1:02:23 > 1:02:27Much better. It's getting there.
1:02:27 > 1:02:30- Your face is clearing.- Yeah. - I can see the movements
1:02:30 > 1:02:33Should've brought your saxophone in, you could have given us a tune!
1:02:34 > 1:02:36SAXOPHONE MUSIC
1:02:53 > 1:02:55- Feel good?- Yeah.
1:02:55 > 1:02:58I feel like a huge cup of tea.
1:02:58 > 1:03:01- Can we have a cup of tea? - Yes, you can have a cup of tea.
1:03:02 > 1:03:04Amazingly, soon Barbara's condition
1:03:04 > 1:03:07improved to the point where Jon could include her
1:03:07 > 1:03:10in the line-up for the forthcoming tour
1:03:10 > 1:03:12of his veteran rock band, Colosseum.
1:03:12 > 1:03:14I'm going to go and tell him that.
1:03:14 > 1:03:18- What about the length of the set, though?- It's scheduled for an hour
1:03:18 > 1:03:22and a half, including encores. It's seven o'clock til 8.30.
1:03:22 > 1:03:26Did you think you'd ever be performing with Colosseum again?
1:03:26 > 1:03:27I didn't think so, no.
1:03:27 > 1:03:30Is this the first tour you've done for a long time?
1:03:30 > 1:03:32Yes, it is.
1:03:32 > 1:03:36The last concert I did was at Ronnie Scott's, with Paraphernalia.
1:03:36 > 1:03:39Kitchen and saxophone is your job, if you don't mind!
1:03:52 > 1:03:55Look, I can't be in two places at once!
1:03:55 > 1:03:56Why not? Why not?
1:03:56 > 1:03:59I can't get lunch and do the rehearsal!
1:04:20 > 1:04:23I didn't think I'd be playing with anyone, actually,
1:04:23 > 1:04:25let alone Colosseum!
1:04:28 > 1:04:32I was really getting in a bad state, actually.
1:04:32 > 1:04:37I mean, it's still not straightforward,
1:04:37 > 1:04:41but it's a million times better than it was.
1:05:23 > 1:05:25Back to the real world.
1:05:25 > 1:05:28Back to the real world!
1:05:30 > 1:05:31Yes, it's true.
1:05:46 > 1:05:49It feels fine, it doesn't hurt at all.
1:05:49 > 1:05:50- This one doesn't hurt at all? - No.
1:05:50 > 1:05:54- You've got a nasty bruise there from a previous thing.- Yeah.
1:05:54 > 1:05:58The needle stays in from nine in the morning until about...
1:05:58 > 1:05:59One in the morning, sometimes.
1:05:59 > 1:06:01One in the morning, sometimes.
1:06:01 > 1:06:03And although that's not painful,
1:06:03 > 1:06:07she wouldn't really know it was there. The trouble is that
1:06:07 > 1:06:08after you've taken it out,
1:06:08 > 1:06:12- it produces these little nodules under the...- Lumps.- ..skin.
1:06:12 > 1:06:14You can't insert into those nodules.
1:06:14 > 1:06:17In the end, after six months, the whole of her stomach now
1:06:17 > 1:06:20is virtually unusable, because of these nodules.
1:06:20 > 1:06:22We have to actually massage them away,
1:06:22 > 1:06:24but this is proving very difficult.
1:06:24 > 1:06:26There's so many little bits to this
1:06:26 > 1:06:29and when we're at home, we're very well organised.
1:06:29 > 1:06:32- But here, of course... - That's why you really need someone
1:06:32 > 1:06:35to do it with you. You can't really do this by yourself.
1:06:35 > 1:06:39I have one pack in my case, she has one pack in another
1:06:39 > 1:06:42and that way, we are able always to make sure
1:06:42 > 1:06:44that we've got the stuff with us, you see...
1:06:44 > 1:06:46when we're travelling.
1:06:47 > 1:06:51This goes on here, like this.
1:06:51 > 1:06:56And then we take some of these.
1:06:56 > 1:06:59The reason why this drug has not been more widely used
1:06:59 > 1:07:02is that actually it produces sickness,
1:07:02 > 1:07:04it produces low blood pressure
1:07:04 > 1:07:06and it has to be tolerated.
1:07:06 > 1:07:10And the way to tolerate it is you now can take drugs for the sickness
1:07:10 > 1:07:12and you watch the low blood pressure.
1:07:12 > 1:07:14Slowly, you ramp up the drug
1:07:14 > 1:07:18and you become completely inured to it, in the end.
1:07:18 > 1:07:22Yeah. I mean, it's a miracle drug, really.
1:07:22 > 1:07:26When I'm on it, I just carry on normally.
1:07:26 > 1:07:30You can't ask for more than that, can you?
1:07:30 > 1:07:35But, you know, when I'm not on anything, I can't hardly move.
1:07:35 > 1:07:39What I'm going to do is I'm going to prime the pump.
1:07:42 > 1:07:45There it is, there it comes, so now I stop the pump.
1:07:48 > 1:07:51This is quite a complicated learning process for you, Jon?
1:07:51 > 1:07:56Well...I'm just a techie, you know.
1:07:56 > 1:07:59It's good it's this way round, not me doing it.
1:08:01 > 1:08:05This is sticky now, and now we take the sheath off.
1:08:05 > 1:08:08And there's the needle, OK?
1:08:08 > 1:08:11And it's one movement. You've got one chance only
1:08:11 > 1:08:13and there it is, like so. OK?
1:08:13 > 1:08:15The drug's now going in quite fast,
1:08:15 > 1:08:18much faster than it would do normally,
1:08:18 > 1:08:20but this is a boost. This is to switch her on.
1:08:20 > 1:08:23All I have to do now is wait for this drug to work.
1:08:26 > 1:08:29Bloody jazz musicians, you know,
1:08:29 > 1:08:31and their bloody drugs!
1:08:36 > 1:08:39If the audience you're playing to tonight could see you like this,
1:08:39 > 1:08:41they'd never believe it, would they?
1:08:41 > 1:08:44I mean, they'd never believe it. It's incredible.
1:08:44 > 1:08:47It's a miracle this drug, definitely.
1:08:52 > 1:08:53Here.
1:08:54 > 1:08:58Oh, right. So you've got completely new gear for this?
1:08:58 > 1:09:01Oh, absolutely.
1:09:01 > 1:09:03The perfect jeans, yeah.
1:09:05 > 1:09:07They look good.
1:09:07 > 1:09:10And this is...
1:09:10 > 1:09:12This is a new purchase?
1:09:12 > 1:09:16- Yeah, my new top.- Oh, right.
1:09:16 > 1:09:19Yeah? It's just an excuse to dress up, really!
1:09:19 > 1:09:22I play in comfortable, relatively loose trousers.
1:09:22 > 1:09:26The most important thing is the bottoms aren't wide enough
1:09:26 > 1:09:29to catch the pedals on the rebound. If they catch,
1:09:29 > 1:09:33I can get sucked into the vortex of my own drum kit!
1:09:47 > 1:09:52Dirk, who's our agent for Europe, needs a lead time.
1:09:52 > 1:09:57Nine months. The big problem for me with Barbara
1:09:57 > 1:10:01is making the decision that in nine months' time,
1:10:01 > 1:10:03she's going to be in good enough shape
1:10:03 > 1:10:08to do a rigorous European tour, and I'm saying to him,
1:10:08 > 1:10:11"We're on a rollercoaster ride with this Apomorphine,
1:10:11 > 1:10:15"with Barbara's Parkinson's and I just can't tell you."
1:10:15 > 1:10:20This is going to be a little ticking time-bomb
1:10:20 > 1:10:22for which there is no real answer.
1:10:22 > 1:10:25We've got 18 people on the road with the band
1:10:25 > 1:10:28and you commit those people and their livelihoods.
1:10:28 > 1:10:31You can't just say, two months before the tour,
1:10:31 > 1:10:35"Sorry, we're not going to do the tour".
1:10:35 > 1:10:37And this is going to be the problem.
1:10:37 > 1:10:40Not so much the fact that she might not be able to play on a given date,
1:10:40 > 1:10:43but how can I be sure nine months ahead?
1:11:20 > 1:11:25We could go on for ever. And Barbara can be composing in her nineties,
1:11:25 > 1:11:27as many composers have done.
1:11:27 > 1:11:30And this means that there's no end, really.
1:11:30 > 1:11:35As long as we can be creative, which is what we've done all our lives,
1:11:35 > 1:11:39we are in a very, very lucky, fortunate situation.
1:11:39 > 1:11:43We've organised our lives so that we didn't have to compromise,
1:11:43 > 1:11:45we could make our own music, create our own public.
1:11:49 > 1:11:52I get the feeling, when I see you play, you forget about it.
1:11:52 > 1:11:55Somehow you get so caught up in the moment of playing,
1:11:55 > 1:11:57that your body has a power
1:11:57 > 1:12:01which you almost can't imagine it still has.
1:12:01 > 1:12:06Yeah, I do forget about it. I think about the music.
1:12:16 > 1:12:22# Welcome to Vienna
1:12:22 > 1:12:29# And welcome to tomorrow's
1:12:29 > 1:12:34# Blues. #
1:12:43 > 1:12:47APPLAUSE AND CHEERING
1:12:49 > 1:12:51It's 14 years, nearly 14 years now.
1:12:51 > 1:12:55Music has helped me really live with it as long as I have.
1:13:44 > 1:13:47Subtitles by Red Bee Media Ltd