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Peter - Interview 11

Age at interview: 72
Age at diagnosis: 67
Brief Outline: Peter was diagnosed six years ago. He experiences tremor, freezing and rigidity and considerable problems sleeping at night. He takes slow release Sinemet and Amitriptyline.
Background: Married, 2 adult children, retired salesman.

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Six years ago, Peter’s wife noticed that he had a tremor in his hands and that he was dragging his feet when he walked. He saw the GP who suggested that he might have Parkinson’s Disease and he was prescribed Sinemet. After a year, the tremor was slightly worse so Peter was referred to a consultant neurologist, who confirmed that he did have Parkinson’s Disease. For a while he took Mirapexin but it gave him a severe stomach upset so he had to stop taking it. Peter now takes slow-release Sinemet at bed time. 

 

The biggest problem Peter experiences is difficulty sleeping, and he is often awake for several hours during the night. He takes amitriptyline to help him relax and an occasional sleeping tablet. But he is very tired a lot of the time which affects his day to day life.

 

As well as the tremor and dragging of his feet, he experiences freezing when he is walking and he gets rigidity in his limbs at times, which can be painful.

 

He tries to stay positive by using humour to cope with his symptoms, and although he felt quite depressed when he was first diagnosed, he has more good days than bad days at the moment. It helps to meet others at the local support group to compare notes and to be in the company of people who understand what it is like to live with Parkinson’s disease.

 

Peter tried acupuncture but he didn’t think it made any difference. More recently he has been having Bowen treatment with a local practitioner once a week, which is a very soft muscle manipulation.   It makes him feel very relaxed and it takes the tenseness in his body away for a while. He recommends it to others.

 

Peter got the PDS to help him put together an information pack for people joining his local branch.

Peter got the PDS to help him put together an information pack for people joining his local branch.

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Join your local Parkinson’s Disease Society branch or support group, because they will have packages for newly designed, newly diagnosed sufferers. We’re putting ours together at the moment. Not every, not every society has this. We found a, a branch doing it in [city] and we’ve copied that. What we’re doing is we’re putting all the Parkinson’s leaflets together, we’re putting, we’re putting in a Parkinson’s DVD, and we’re putting these all inside a nice, brightly coloured plastic folder, a wallet rather, to give to newly diagnosed patients. We’re hoping that one of the next moves might be to sort of put those with the consultant or, or through the, through the Parkinson’s disease nurse as well. But certainly if they join the local group, they’ll, they, they’ll be able to get all the help that they want. You don’t even have to send to the Parkinson’s Society. If you join a local group, they will have all the leaflets. And you can get a leaflet for everything. It covers everything, it’s, it, really is wonderful. 

 

It’s a, a great help, it really is. There’s advice on exercise, sleep, medicines, oh, it covers absolutely every aspect that you would, you would want to know, particularly as a newly diagnosed person. I would, that’s the first thing to do, is to join the local Society branch or support group. The branch is a little bit more self-supporting. We’re not, we don’t qualify as a branch yet but we, we are what they call a support group. So we’re run by the, we’re overseen by the Parkinson’s Disease head office.
 

Having campaigned for a specialist nurse Peter describes his feelings now they have one.

Having campaigned for a specialist nurse Peter describes his feelings now they have one.

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And you see, now you see the neurologist every six months?
 
Every six months, yes. And of course, yes, what we can do now is talk to the Park-, we have a Parkinson’s nurse to talk to.  She doesn’t promise to be on the end of a phone, but she’ll take a message and she’ll get back to you, she always says within two days. Because I mean she, poor girl, she, she’s very good and we all like her. She, she’s the right person for the job, we’re all convinced of that. She’s a little bit above your average district nurse. She’s got a university degree and she was qualified to do this, that and the other. She was out of the district. She lives in [town]. And so all this is, I mean she’s really been pitched in at the deep end, but she seems to get on well with the two consultants at the neurology department in [town]. And we all, we all like her.  We’ve all, we’ve all met her at least a couple of times. And I’ve met her when she’s been with the neurologist. So I know if I get any problems, I’ve got an answer at the end of the phone. And the neurologists themselves are very good, not like a lot of places. They will, you can get a message to them and they will come back to you which I think is nice. And it doesn’t happen in every, in every, in every hospital and there also are a shocking shortage of neurologists in this country. 
 

Peter describes why he became enthusiastic supporter of the local branch of the Parkinson's...

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Peter describes why he became enthusiastic supporter of the local branch of the Parkinson's...

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You couldn’t keep me away now. I find them a great help, because you’re talking to fellow sufferers, you are comparing notes, you are enjoying yourself because you’re amongst people that can sympathise. We get some very good speakers.

 
We have a meeting every third, the last Wednesday in every month and we have a different speaker come each month. And there is always something of interest there for everybody. And, yes, it’s good to meet other people and compare notes. And although it affects people different, differently, when you come down to it everybody else has more or less been through the same period that you’re going through, except those that have only just been diagnosed or who only have it very, very slightly. 

 

Several members of Peter’s family are known to have had Parkinson’s; he wonders about the...

Several members of Peter’s family are known to have had Parkinson’s; he wonders about the...

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I asked him if Parkinson’s was hereditary. And there are two different views on this, but I think the main view is that that is possible. And we think that my father had Parkinson’s, but not absolutely certain. And one of his brothers was diagnosed with it just before he died. Well, he, I mean he was 82 when he died, so, but he was, he’d been diagnosed with it just. So I think there is a possibility that it’s something that I have inherited from my father’s side of the family.

 

Do you have any children?

 

Yes, I have a son and a daughter. And my daughter is so like me it just isn’t true and she worries to death about everything. And of course she’s, she’s obviously worried about it. But I’ve told her that she mustn’t worry about it because it doesn’t necessary, necessarily pass from father to daughter any more than it does father to son. And yet what I’ve found is, I don’t know how far your research has gone on this, but it seems to me there are more men that have it than, than there are women. I don’t know whether you’ve found that.

 

Yes, I think that is the case.

 

I mean I, obviously when we go to the meetings there are, there are females there with it, but the membership is, is predominantly men. So I don’t know what the reason for that is.
 

Peter was introduced to Bowen Massage and if it wasn’t so expensive he would have liked to have...

Peter was introduced to Bowen Massage and if it wasn’t so expensive he would have liked to have...

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And he went to a lady who does the Bowen treatment. Do you know about that? Oh, gosh. It’s a very, very soft muscle manipulation. That’s the best way I can describe it. It seems very, very simple. I go for that once a week. I shan’t be able to much longer because I can’t really afford the sessions to keep on going every week. But I come out of there feeling so relaxed and well. I go in for a. We have an hour’s session at a time. And it’s a thing which started off I think back in the 30s, something like that, in Australia. And the guy that did it just obviously had a, a gift for healing which is something I believe in very much. People, it is possible for people to have healing hands. I do believe in that. And he adopted this, it was a mining town in, in Australia, Kimberley I think it was, and he just used to sort of do this muscle manipulation. And people would come in sort of stooped and would walk, would walk out totally normally. He had two assistants, and when he died they kept it up. They eventually wrote it up. And it has now become a worldwide business. And this lady who gave my wife’s Barbara’s son this, the Bowen treatment, she said she had treated several Parkinson’s patients quite successfully. Well, thinking about that, you, successfully means curing, and you can’t cure Parkinson’s. But, yes, obviously it does work because you, it does bring you relief, but only for a very, very short time. I see this lady in the nearby town Stony Stratford and she’s absolutely super, and I’ve told her I want her living here permanently so that she can do it every day sort of thing, you know.

 

So what are the differences that you see?

 

I just feel so absolutely unwound and totally relaxed. And that is something that you can’t do with Parkinson’s. It is automatic, I can be sitting here and you’re watching something tense and exciting, exciting on television, which doesn’t happen very often these days, but I find I get the shakes. And I try and hold that down and I get, I get all tense and wound up. And the only way I can relax is if I go and lie down on there. So she seems to take that tenseness out of your body. But because you’ve got Parkinson’s, it doesn’t stay away for very long.
 

Peter and his wife enjoy going to the theatre but have to be careful to book the right seats.

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Peter and his wife enjoy going to the theatre but have to be careful to book the right seats.

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She doesn’t like going out on my own and leaving me. But we, I’ve got the phone here, I’ve got my mobile. I’ve got my books and I’ve got the television, music. I don’t really need to go any further than the toilet sort of thing, you know. So I always say, “Well, you go to your rehearsal for this, that and the other, whatever it is.” We still manage to get to the theatre. We like the theatre. And, but again I will only go if we can book certain seats, and it always has to be the end of a row. And I want to be on the end with my wife next to me, because I can’t imagine what it must be like to have a shaking wreck like me sitting beside a complete stranger, what it must be like for them when you go to the theatre, you know. So, yes, I will only go if I can sit on the end of a row. And we like to choose a certain area in the theatre in the dress circle, where you can stick, there is, the front row, you’ve got a tremendous amount of room to the side and in front of you.
 

Peter's colleague warned him off a 'frightening' book on Parkinson's. He has decided he would...

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Peter's colleague warned him off a 'frightening' book on Parkinson's. He has decided he would...

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And I’ve had, again this colleague of mine that I mentioned earlier, he has always very, been a very technically minded, nosy person, so he bought a, himself a really big hardback book from somewhere or other, a medical book on Parkinson’s disease. He said, “I found it really frightening.” “So” he said, “I wouldn’t recommend it to you.” I said, “No.” He’d, he’d offered to lend it to me but with that warning and I said, “No, I don’t think I want to know.” I’m not saying that I’m, I, I don’t want to become, I don’t want to look ahead. I want to sort of just make the most of what I’ve got now and not worry about what, where we might be next year. Obviously we think, we have to think about certain things.  
 

Peter had at first been put off by seeing someone whose operation was unsuccessful but then saw a...

Peter had at first been put off by seeing someone whose operation was unsuccessful but then saw a...

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I saw him for, two or three weeks ago. And he was just a shaking, trembling mess. I mean he can’t, he couldn’t, he couldn’t, I don’t know his age but he can’t be more than 50. But he and his wife had to pester and pester and pester before he finally got on the programme. And then he had to go through all sorts of tests and psychological examinations before they could decide that he was a suitable candidate. I mean it is quite a, a long operation, isn’t it? I mean it’s about eight hours I think. And you, you’re....
 

 

You’re, you’re awake and you’re, I think you’re sitting, aren’t you, or something like that? And it, it’s not a programme I watch avidly, please don’t think that, but on Richard and Judy one afternoon, I was just, I just happened to see it and I thought, “This guy’s a Parkinson’s sufferer.” Do you know what I’m going to say? I mean this was last year I think. And he’d had this brain stimulation. And he was a pleasantly set up looking guy, a little bit overweight perhaps, in his 40s I would think. He was a businessman and he travelled the world very successfully. I don’t know quite what it was he did. And he’d had this brain stimulation. And he’d got a thing like a, a remote control on his chest. And he said to Richard, he said, Richard said, you know, Richard being Richard, because he’s a twit, he said to him, he said, “What happens if you switch it off?” And he said, “Do you want to see?” So he said, “Well, yes, if you don’t mind.” And he switched this thing off, and he immediately started to shake, he was like a huge jelly.

 

 
I mean he was able to switch it back, and he just stopped the minute he switched it back on again. I thought, “My God.” So it obviously shows what a bad way you’re in before they, before they will do it. And again, yes, I mean I’m 72, so they’re not going to worry too much about me. But he was a younger guy. And, yes, I thought, I thought that was absolutely wonderful. So they’re getting there. 
 

Peter describes learning to handle the times when he is feeling down.

Peter describes learning to handle the times when he is feeling down.

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The thing I always think when I’m at my darkest, which doesn’t happen very often, I’ll see something on TV which will move me almost to tears and I think, “There’s always somebody . . .” That always makes me feel better about myself. You can always find somebody worse off than yourself. And, yes, I think that, that, that’s important to see things. It gives us all a reminder now and again sort of thing about how, how lucky we are.
 
I’m perhaps getting used to the idea of, “There ain’t no way out of this” sort of thing, you know. My wife will happily confirm that I’m a fairly quick-tempered man, which probably is the reason for my blood pressure, but I always cool off very, very quickly. But I, I, but because she is such a strong person, when she and I came together I found out I was on a losing streak every time I threw a paddy. So we talk, we, we talk. And I’ve learnt now to say to her in the morning if I’m having a tough time, which happens more and more now, I say, “Don’t speak to me this morning.” She says, “Oh, you’re feeling grumpy, are you?” And I say, “Yes. So don’t.” And she leaves me alone which is fine. Because otherwise she would, she would see that I was sort of under the weather and so ask lots of caring questions, “Can I do this? And can I do that?” because I mean she’s super, bless her, I don’t know where I’d be without her, and I would snap. So I, what I’ve learnt now to do is to tell Barbara when I’m feeling a bit down, a bit depressed. It doesn’t happen as much as it did, I don’t think. No, I think I’m, I’m getting, getting used to it sort of thing, you know. I’ve got to. I’ve got no alternative sort of thing. And at the moment good days are more often than bad days. 
 

Peter doesn’t want to go abroad any more. For one thing he believed the insurance would be very...

Peter doesn’t want to go abroad any more. For one thing he believed the insurance would be very...

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We wouldn’t dream of going abroad on holiday now. One reason is that I hate hanging around in, we both hate hanging around in airports anyway. Two is what might happen to me when I’m abroad. Your premiums go up when you’re 70 anyway on holiday insurance. And I think with Parkinson’s disease I’d probably have a job to get insured anyway. So, but that’s not a problem. But we do have to think twice about if we’re going away anywhere. And we’ve done very little of that in the last three years.

 

My home town is Bournemouth. I lived there for a good part of my life. And we do like to go back there once a year. And we’ve found a nice hotel in Bournemouth that if necessary would be able to cater for me. They’ve got invalid rooms, although we’ve just made sure we’ve got the right kind of room at the moment. They’re very understanding. We’ve, we’ve found a nice comfortable hotel there. And so, yes, we’re, we’re looking forward to going again for, just for a week maybe.
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