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Joe - Interview 32

Age at interview: 64
Age at diagnosis: 43
Brief Outline: Joe developed Parkinson's disease while in his 40's. Deep Brain Stimulation when he was 60 produced a dramatic improvement in his symptoms.
Background: Civil partnership.

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Joe developed Parkinsons disease 20 years ago when he was 43. For some years he could continue working as an actor, but when his symptoms became so severe that he couldn’t even continue with radio work, and he began to feel that life was not worth living, he opted for the operation known as Deep Brain Stimulation. Immediately after his operation he noticed a marked improvement in his symptoms. Five years later he is still much better than before the operation. He still has to take some anti PD medication and has some difficulty with his speech and some athetoid movements when he is tired.
 
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Joe had found the PDS very helpful, if a bit unrealistically upbeat, when things were very...

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The Parkinson’s Disease Society has in the past been for me an enormous help, although I said that being ill made one feel lonely it hasn’t led me to join a branch with the PDS or want to meet other people that have the illness. I’m not a joiner, I’m not a club person so I’ve remained with myself in dealing with the illness. The PDS has helped with its literature, telling everyone about advances in treatment, problems of treatment, sorts of treatment available, difficulties as the illness progresses, different people’s experience you get told through the magazine. It’s all a bit upbeat and one can sometimes feel irritated by that because it’s not an easy illness to have but I think they do a good job for the most part. I have made, I have contributed in the past to a couple of the videos. It’s a while since I was in touch with them, and I’ve needed them less since the operation. If I hadn’t had the operation I don’t know whether I’d still be around, but I think if I were I’d need their help quite a lot.

 

Joe’s speech problem has changed since DBS. His speech therapist encourages him to make an effort...

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I had speech difficulties before the operation, the kind of Parkinson’s patients often find, I spoke too quickly so I tumbled over the words, and I spoke too quietly for people to hear, I’ve always been quiet of speech, and I am still, but it was worse when I was definitely a Parkinsonian.

 

And this is now something different you think or?

 

This is a different set of speech problems yes, I’m still too quiet and one of the ways my speech therapist tries to combat that, she says, she says it’s not particularly helpful to try to think of articulation as something to aim for, what she usesis volume, that one should try to be loud. Apparently if you have Parkinson’s you think you’re speaking at a level that is normal but in fact it’s below normal, so if you aim for something, something that seems to you to be too loud you’re likely to hit a normal level of speech.

 

Is your tongue a problem at all?

 

The tongue and the lips articulating is a problem, getting the breath right I don’t, I think there’s something psychological about it as well as physical. I don’t know if I can explain why I think that. Emotion certainly comes into it, if I get angry with someone on the telephone my speech gets clearer and louder when I express that anger. When I’m telling someone about something important to me I’m likely to be able to speak better than if I’m just saying, “Pass the salt please.” So I think, I think there’s a complication in the speech form which I don’t fully understand.
 

Joe explains what he was told about the operation before he accepted and why he agreed to have it.

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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.
 

Joe explains why it was necessary to be awake during the operation.

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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, how’s 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.
 

Joe realised almost at once that the operation had been a success. He explains some of the...

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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.
 

Joe compares his own improvement with that of other people he sees in the neurological outpatient...

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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 who’ve 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 who’s 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.
 

Joe's condition has gradually deteriorated since his operation and at times he finds himself...

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I tend not to think about the future, it’ll come when it comes.

 

Do you ever worry about it?

 

I do yes. Somebody said we’re all mad at night, and of course if I awake in the night with black thoughts. I think what I hope is that I will die before it’s too difficult because the illness of course is progressive deterioration, and underneath the massive improvement I’ve had in my symptoms I think I can still sense the illness going on. This speech is one thing that indicates that it’s still operating, My problems with balance are another indication, the illness hasn’t been cured by the operation it’s been ameliorated.
 
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Joe's social life improved at first after his deep brain stimulation operation but as some of...

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I find because I have difficulties talking now, I find it quite difficult to connect with even friends because conversation is not easy, and I suppose I tend to give up before I start. And certainly with strangers at parties it becomes something I find almost impossible to do, you know, the routine of where you live, what work you do, the sense of connecting with other people is difficult to get, so I begin to feel again some of that isolation I felt when I was pretty ill.
 

Joe experienced a kind of compulsive behaviour which seemed to him excellent till he was warned...

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There’s a drug I was on for some time, about ten years ago, I wish I could remember it, I can’t remember what it was called, but I was doing it, a creative a writing course in [city] at the time, and it made me very creative, and I didn’t need much sleep, I slept very few hours and I wrote screeds and screeds but when I saw again a psychologist I was seeing at that point because I was suicidal, he said, “You’ll have to stop this, this drug because you’ll crash. Do you feel wonderful?.” And I said, “Yes I feel marvellous.” He said, “I’m sorry you have to come off.” Pergolide that’s what it was called. So that was a drug that affected me.
 

Giving up being an actor left Joe uncertain and unhappy about who he was.

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Yes [sighs]... it does wipe out your life, and actors of course don’t retire they keep going till they drop, so when I had to stop working I found it very difficult indeed because my sense of who I was was very intimately bound up with my acting, if I wasn’t an actor who the hell was I? What was I for? And I was very depressed for a time and found it very difficult. But I’ve got used to not doing it any more and now it seems to be such a frightening job I could never do it, when I think of things I coped with, as an actor, I mean silly things like quick changes and remembering which character I was playing and at what point in a play it seems to be very, very hard to do.
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