he consultant in the hospital treated me for, with some medicines, they tried, roughly eight different kind of medicines you know?Nothing worked on me, then in the end he suggested it’s, it has to be Parkinson’s, you know, because I’m not responding to any medication at all.So he still kept on treating me, calling me back in every six months and the problem was getting worse and worse and worse, more in right arm than in left.The tremor was getting bigger and more in right arm than left but both arm were shaking. I could not hold a glass of water, I couldn’t shave, I couldn’t pull a zip up, I couldn’t do or undo a button of shirt, you know, the shaking was so bad, so the consultant from my local hospital sent me to [another] hospital, you know, for consultation there.And the surgeon andthe consultant, which is I believe above him, you know?

So they looked up on me and they diagnosed me as Parkinson but it’s increasing, by then I was about, with this disease, about two or three years I think, andthey said, Well it’s, it’s, it’s out of control now, it cannot be controlled with the medication, but you remain on the medication, we’ll enter you a Parkinson’s Disease StudyWhich they done, at that time I don’t know what it meant, but then as time went by I experienced what it meant, you know?They kept calling me in the hospital to, do various tests, you know, walking, picking things up,doing things, you know?Andthey kept me calling in again and then they decided that nothing seems to be working on me and I’m physically okay to have a surgery, so they thought about it several times whether go ahead with the surgery, you know, I said, If there’s no cure for it I’ll either live with this, which is impossible, or I’ll have a surgerySo they looked at my state, they looked at my condition, they looked at my age and whatever and they thought the surgery might be the answer because I look, I’m not ninety-five years old or something like that, you know?I look quite capable ofputting up with the surgery, you know.

Perhaps at this point I mention that I’m very well apart from my speech which has been affected because I’ve had an operation on my brain, which has made an enormous difference to me. But before that operation which took place about five and a half years ago I was very, I was getting very disabled and very troubled by dyskinesias, by involuntary movements, my walk was very poor, I needed help with various things during the day I had to be watched carefully night and day.So I was getting fairly ill and pretty suicidal too because it seemed to me it was an intolerable way to live, so the operation came in good time and I’m very grateful for it.

My memory fails me quite often but I think, the operation was suggested to me because I was young enough and it seemed that my symptoms were the kind that could be helped, not every symptom is helped by, by the operation I think they suggested the tremor and the stiffness could be helped.

It was my neurologist’s suggestion that I might be suitable for the operation on the NHS because it’s very expensive, costs about twenty-five thousand, so I’m very, I’m worth a lot of money.

So when it was first suggested to you what was explained to you about what it might mean? And did you have reservations about it?

Well it sounds quite frightening because it was explained to me that I would be awake, it would take most of the day, they would drill into my scalp and insert electrodes which would be connected to a battery, a neuro-stimulator under my collarbone.It was carefully explained to me that the risks were of bleeding, stroke, death and I asked of course what the percentage likelyhood was of any of those things I can’t remember what I was told. But I, it was explained to me that there were these risks.So did I want to go ahead. As I said earlier I was finding life intolerable so it seemed to me there was nothing to lose, and I did trust the professor very much.I didn’t have any serious doubts and no doubt about the outcome either.

Well actually I was looking forward to it, I was, although it is scary, you know, because they, they, they pointed out it was risky, operation carries risks, you know, infections, rods notin the right place, things like that you know?It does carry risks, I said, Well if carry risks, I’ve got to die one day so I die, I want to die, if I die on operation, operating table so be it, you know, but I can’t live with this, I can’t live with this, it’s so embarrassing, you know

…in my communitythe operations are normal, someone’s having a heart bypass, some’s having a back operation, someone’s having something removed, so I was considered among, among those patients, you know, and the prayers were held for me in the local mosque, you know, God make him healthy.

He comes back with us, things like that, you know, as well but that’s quite normal for my community, you know?I mean several people that I know have a heart bypass and I was considered that oh I’ve got this thing fitted in me the same asthey fit, they fit thething in the heart, you know?

So is that, I mean when you were going before you had it did you think it was quite likely that you might die?

Well that’s, that’s it that’s the risk they tell you don’t they?If something goes wrong,I didn’t think I would die but I thought some other things, like I end up in no brain, I end up with damaged brain, I end up mad, I end up, things like that, you know, but never thought of, that I would go to sleep, you know, that I’ll die.

And that must have been quite frightening to have those thoughts?

Not really no, no I, you see our belief is a religious-wise that whoever is born in this world has to go back to his creator. I mean dies, and that’s it, some die forty years old, some die sixty years old, some die twenty-five years old. So if you, if you keep that in mind and you and I both have to go one day then, then nothing, then no other fears attack you, you know, no other fears overpower you, you know?

The operation, you’re awake because they need you to respond to questions and also to indicate I suppose by movement whether they’re targeting the right part of the brain, they’re aiming for some, some are very small and very precise, and they need your help to do that.It isn’t, it sounds horrific, drilling in to the brain while you’re awake but it isn’t at all, the reason for this as I understand it is the brain has no nerve cells so it doesn’t feel pain.I think. So you don’t feel the pain as they drill into the scalp which of course does have nerve endings you have a local anaesthetic.

Your head is held in a clamp, it’s an extraordinary experience, they’re drilling in, and you’re not feeling pain anything much, it’s as if there’s an aeroplane inside your head, there’s so much noise.I’m a great holder of hands and also it’s, an enormous comfort if somebody holds your hand.

Did you speak?

I spoke The professor has, it’s not a mantra but I can’t think of a perfect word, he would say to me, This is a night mail crossing the border bringing the cheque and the postal order, hows it go on Mister George?And I had to tell him how it went on, as I spoke I think mainly in answer to questions.

The only experience I had during the operation was that, I was looking up at the ceiling and I could see double, double vision, you know, I can see it’s, it’s the lightbulbs, operation light [laughs] operation room lightbulbs you know?I can see, suddenly see two, you know, one becomes eleven, you know?And then they, they done something and eleven becomes one, and when it became one I said, Oh that’s okay I don’t see double vision nowAnd they locked it there, you know?That was, that was to do with the depth of the laterals I believe you know?

When did you realise that it had been a success?

Almost at once.The brain is shocked or stimulated just by the insertion of the electrodes so before they set up the connection with the battery, which happens two or three days afterwards, there’s some improvement just from the electrodes going into the brain.So, I was no longer, when I was in hospital having this operation in the preparation days before it I tried to be as independent as possible which meant I fell a couple of times going to the loo because I didn’t look for help, so after I had the operation going to the loo was a breeze, I could walk without assistance.I was very tired I think after the operation, can’t quite remember, I had lots of friends come to see me.

I think the difference the operation made was that I began to feel like me again rather than like Parkinson’s which had become so dominant.And, I think the prevailing feeling I had when I was so ill was one of loneliness, nobody can actually understand what it feels like, which makes you feel very isolated.

I’ve had some fantastic effects. All my life I have had sleeping problems. Suddenly I can, when I go to bed at night I fall asleep [laughs], quite simply. And to an insomniac, which I have been since I was a child, so it’s something familial perhaps. But it’s so fantastic [laughs]. Apart from that, I don’t think well the, the tremor has gone, or is being kept in check by very small doses of a different or a differently working drug. And I am in need of no Levodopa and I think that just as earlier I have good days and bad, I also now have good days and bad, but the fluctuations are much less. And therefore I often forget to take my medication. it’s not so, not as serious as it was. So that’s I think the gist of my story [laughs].

So what impact has the operation had on your being day to day life now?

Well you know the operation comes at the time when I’m ready for pensioning so there’s a big change anyway. And I, I can’t say that I experience, you know, it’s strange I, I don’t experience much change. But that is because of my denial of the disease in the first place and in a way I can see the change more in the reaction of my friends because they can’t stop staring at me [laughs]. And now they confess that, oh yes I, I was really shaky before and they were sometimes scared by what they saw, although they didn’t tell me. And myself, I was inside, I was never shaky [laughs] I, I wasn’t much, much influenced by that disease. It never, I never allowed it to take me [laughs], so I never became a patient.

When I go to hospital for check-ups or to make adjustments, which I endlessly do, trying to get things as good as it can be, I have met other patients whove had the operation, you can usually tell because they’ve got these lumps on their head like I have…

…those bumps there are where they drilled into the scalp and they sort of plug all the holes they made.So I can usually tell when I see another patient whos had the operation, especially if like me they’re losing their hair.Women it’s not so easy to tell.It seems to be there are people who have been less helped than I have, who still have some tremor, speech problems, perhaps some troubles walking still.My walking is excellent now, beginning to be less so but that, that I think is just because I’m getting older, the knees are going like they do when you’re older.

And he tried me on, must have been about a dozen other tablets, but none of them seemed to be working.And I, I just heard about this operation.It wasn’t GDNF, it was something else.And I, soI kept on to him, the surgeon, Can I have that?Can I have that becauseI don’t want to be an old manAnd he said, No, you’re still too youngEventually he referred me to a surgeon whod done the operation, whod done the operation and how can I put it? There’s always a consultant and a surgeon.I was referred to the consultant and he point-blank told me that I was too good for the operation.He went all through the, the benefits of this operation and then told me, You’re too goodBut luckily the surgeon was next door and he said, You’d be an ideal candidate for this, this operation

And then, sothey put me on what they call 90 day trial. What they call themselves psychoanalysis, something like that. The person that tests your mind and make sure you’re, you’re sane.And you done tests like separating coins and, with one hand and clicking a counter with the other hand, and putting pegs in boards, and memorising numbers he said and you’ve got to say them backwards.Andthat was, that was hard because I was getting tired.And, and then the results come back through and he said, Yes, we’ll, we’ll accept him on, on the course for this operationBut I didn’t know that there was only ten people that were able to, that’s all they, they were allowed to do.

And so 90 day come, you go to hospital, they take you off medication. They do a video and they send you away again to do a six day and 30 day. Then on the 30 day one, they get you to sign all the consent forms but still tell you the, the morning of, before the operation you’ll go and do some more tests.But you could still fail.If, if you’re good enough you could still fail.We won’t operateSo then I thought, OhSo I thought, I can just do my . . I thought, I’ll just do my bestBut what they don’t tell you is your best, they want the worst from you.I was thinking, Oh, I got that right, got that rightBut I was getting it wrong.And the one I failed on miserably was the smell test.I couldn’t tell the difference between petrol and soap, because my sense of smell had gone and everything like that.And then, well he come up and said, Go home and get a bag and come back in.You’re going down for surgery in a couple of days’ timeSo I talked to my family.They, they told me the risk, the hospital told me the risk that was involved, because it’s a new, such a new operation, there were risks thatI wouldn’t come out, come out of surgery.I thought, Well, I’ve got to go for it

I think it was about a week or two weeks I noticed I could write more, I could keep it on the line.It was, it wasn’t getting smaller, it was getting, I could read it.I could do things like sensitive, turn over heavy milk bottles, turn tissues, whereas before I couldn’t do that.And I thought, This is greatAnd then he said, Every month you’ve got to come . . I’ve got to go back.He said, It lasts, it only lasts a month, then you’ve got to be topped upAnd then, Oh, this is great.This is the cureAnd the company, the drug company who owned the, who developed the drug, they come down from America to see, to see us all, because they couldn’t believe the results.Because they always thought it would take about two to three years before you see any, any improvement and to see somebody in two to three months walking, doing things.Because they’re, they’re, they’re different tests from, in America.They weren’t convinced they had done it right in the hospital I was at.So they done all sorts of tests like finger clicking and touching your nose and doing everything like that.And they was amazed.She said, she even said, Oh, it, it’s, it’s cured it

But, unfortunately, that, that went on for about two, no, was it? two years.I had my life back.And then all of a sudden we just got a phone call out of the blue from the hospital saying the drug,all top ups now had been suspended.They just pulled the plug on it.Of course we was all devastated.Thought, What’s going to happen nowBut I, well, I was, I was one of the lucky ones, because whereas they used, because they’ve got a pump in them, they used to pump, they used to pump all the, the, the drug up to you, but they didn’t turn mine off.They used to, they had to turn everybody’s pump off and put some, what do you call, saline solution in, just to keep the, the pipes all washed and clean.

But for about three months I was going in there and I couldn’t understand why they was getting me in and just telling me to go home quick.But then I found out if I did stop they was topping me up all the time with this drug, which they shouldn’t have been, because they believed that if they had one person they could still show results.But eventually they was forced to stop.So, but all the other nine have had their pumps taken, all their wirings, but I’ve still got mine in.And then, that went on for, oh, about two years.And we was all, we was ringing each other up, we was all going, How are youOh, I’m poor, I’m bad nowAnd then they, they always said to us after the first operation,You, if you want, you can always, if you feel like it you can always have the, the DBS operation.There’s no question you will get that