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Peter - Interview 20

Age at interview: 64
Age at diagnosis: 56
Brief Outline: Peter was diagnosed with primary lateral sclerosis (PLS) 8 years ago (1998). Symptoms progressed quickly at first, but now more slowly. His speech was severely affected, so he was interviewed through his wife Ann. His mobility is also affected.
Background: Peter (aged 64) and Ann (aged 58) are a married couple, both retired teachers, with 2 adult children. Ethnic background/nationality' White British.

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(Peter's speech has been affected. He tells his story through his wife, Ann)

Peter's wife first noticed he was having problems walking when they were on holiday about nine years ago (1997). He started to find it hard to keep his balance when cycling and exercising at the gym. He went to his GP several times, but was reassured it was stress. About a year later, he had a fall at the school where he taught, and the county medical officer referred him to a local neurologist. The neurologist was unsure if it was motor neurone disease. He sent Peter for a second opinion to a specialist in London, who told them Peter did not fit the normal diagnostic criteria for MND, which they were pleased about. They only discovered it was the primary lateral sclerosis form of MND when they were going on holiday a few months later and needed to know what to put on the travel insurance form. They described this news as “a reprieve”, and feel very fortunate. 

As no-one could tell them how it would progress or offer any treatment, they stopped going to the London clinic, but Peter still sees a local neurologist as necessary. He was unhappy with the way his first GP put it all down to stress so he changed to a new GP, who now manages most of his care. They manage without any help from paid carers, and try to avoid medical services as far as possible. Although most services Peter has received have been good, he feels it is important that any staff coming to their house should make sure they are well informed about the condition, as this has not always been the case.

At first Peter's symptoms progressed quite quickly, and he retired from teaching. Then he feels the progression slowed. He uses a walking frame at home, and has an electric scooter to go into town. Within the last 5 years his speech has been increasingly affected. They have had low times, and Peter finds he gets very emotional, but they are determined to keep a sense of humour. He has learnt computer skills, so he can keep in contact with family and friends through e-mail, but he does not want a Lightwriter, partly because he does not like the sound of the voice. He tends to use pen and paper instead.

Ann and Peter see it as 'our illness, not just Peter's'. They decided early on that they would deal with it in their own way, by ignoring it as far as possible, and trying to do as many things as they can. They see PLS as life-changing rather than life-threatening. Peter still goes to the gym regularly and the trainers work out personal exercise programmes for him to keep fit. Ann maintains many of her own activities, and they take lots of holidays. It can be difficult to organise trips abroad, but well worth the effort. They are conscious that they have enough money to do all these things, partly because Peter had insurance against long term sickness which pays his salary, but not everyone is so fortunate. They would like more to be available to other people, especially exercise facilities and support.

 

At first they were told his symptoms did not fit the diagnostic criteria for MND. They were happy...

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Ann: Well, the, the first lot, set of investigations were locally, and that required an MRI scan and blood tests and reflex tests. And really - and that was done on a daily basis. We had to go several times to the hospital. But obviously when we went for London, to London - and that, and they were just the, they were the same set of tests, which was very reassuring to think that, that the second tests, set of tests had the same results, so nothing could actually slip through on a local front. And they were the same. But you stayed in hospital for that, didn’t you?
 
Peter: Yeah.
 
Ann: But, and that was that. I mean, we were told he hadn’t got full-blown motor neurone. He didn’t, and we decided to come home and get on with it.
 
Was that the point at which you were told it might be primary lateral sclerosis? Or when did that happen?
 
Ann: That, that, I think that, that was a little later. In, in that when, when we went to see - because we did continue to see our local neurologist, didn’t we? [R1: yeah]. And I think as it progressed a little, that’s when the PLS came up [R1: yeah], wasn’t it?
 

So up till that point you were carrying on thinking it wasn’t…

 

Ann: Motor neurone.

 

…motor neurone. You just didn’t know?

 
Ann: And we just didn’t know what it was. It was a neurological disorder that they really didn’t understand, and didn’t know.
 
Peter: [starts writing]
 
Is there something Peter wants to add?
 
Ann: Yes, [reading] not, nothing - oh, and they said there was nothing left that they could do.
 
OK.
 
Ann: That was it really. And it was, “Go, go home and see how you get on.” And that’s how it was, wasn’t it?
 
Peter: Yeah [still writing].
 
Ann: [reading] Oh, and because they’d done all the tests, that was it, and then - then they called it primary lateral sclerosis, yes. Because that’s what was left. [Peter laughs]. I think they can have tests for other kin-, forms of motor neurone, but not for primary lateral sclerosis. Or that is the one that’s left. So that’s what they call it. That was, yes, that was the impression we got, yes.
 
Peter: Yeah.
 
Ann: Now I have to say in all this that probably we were very ignorant. And we also buried our heads in the sand and didn’t want to know.
 
Peter: Mmm.
 
Ann: We didn’t want to go and look - I mean, I don’t think we had the Internet then, nine, eight, nine years ago, but we didn’t want to know how bad it was going to be. We just wanted to get on on a day-to-day basis.
 
Peter: Yeah, yeah.
 
Ann: That was how we cope, and that’s how we still cope, we - daily, isn’t it?
 
Peter: Yeah.
 
Ann: Apart from when we book the holidays [Peter: laughs], which obviously is - so.
 
So do you remember a, sort of a moment at which you were given a diagnosis of PLS?
 
Peter: No.
 
It’s just sort of crept up on you?
 
Peter: No.
 
Ann: Yes, yes, it has. Well, do you know, that’s, I can’t specifically remember when.
 
Peter:  [shakes head]
 
Ann: And you can’t either. No, it’s crept up on us really, you’re quite right. That’s a good, yes, that’s a good way of putting it. We were just, “Ah, it’s not motor neurone.” That was that. And also, you see, Peter’s condition didn’t deteriorate. Initially it, he det-, his legs and his walking deteriorated very quickly, but he did plateau then for about four years, didn’t you?
 
Peter: Yeah.

 
 
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They consulted a homeopath but decided not to follow the advice given. They don't believe in ...

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There was a rugby player, wasn't there, who had ALS, quite a famous rugby player, and he was doing a lot of quirky things to try and stop the progress of it. But I'm not sure how that's worked out for him. But we looked at the quirky things and decided, no, they weren't for us'

But we did actually go and see, we did try some alternative therapies, and we went to London to visit a homeopath, who said, 'Take out all your mercury fillings. And don't eat dairy and don't eat wheat.' So that didn't suit. Because the answer was there was nothing she could do. And that is, the answer is that there is nothing that can be done, and you have to live with it the way it is.

 

Peter goes to the gym to maintain upper body strength - he feels lucky he can afford it. He'd...

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Ann' But he does like to be on his feet and he does like to stretch his leg, his legs. I think the one - yes, you bought that a year, didn't you? A year after you were, started to deteriorate, yes. And that's been just wonderful. But the one thing that he has kept doing, and we think has helped Peter, is that he used to go to the gym a lot, and he still goes to the gym. He goes to the gym twice a week and has a personal trainer, who stretches his legs and his muscles, makes him do lifts. His, his upper body strength has been kept up to speed, which means that when he does fall he can help himself to get up, which is wonderful, because I can't lift him.

Ann' [laughs] But together we can do it, together we can do it. So he goes to the gym twice a week for a trainer. He also goes on his own, and walks on the treadmill - very, very slowly, but that keeps his legs moving. And he sees a physical therapist once a month who gives him a nice massage, which he thinks is wonderful. And she's blonde as well, so that helps [laughs]. [Peter' writing].

I guess with those walking, the treadmills, you can, you've got something to hold on to, haven't you?

Peter' Yeah.

Ann' Mmm.

So actually they're ideal in that way.

Ann' Yes. But as you say [reading], I mean unfortunately you have to pay for all this yourself. And if something like this could perhaps be on offer a little more for other people.

Peter' And, and we -- [Writing].

Ann' Well, I know we pay a lot of money. I don't think we need to go there [laughs]. We do pay a lot of money. But that's fine because we can, you know, that's what we can do. But unfortunately there are people who can't, and if things were, you know, were on offer like that. Also a hydrotherapy pool would be wonderful, if there was one that he could use. But we've discovered that the nearest is [city] and that would be'

So do you go swimming? Can you?

Peter' No.

Ann' When we go on holiday he can - no, he did used to go swimming. There is actually a, a heated pool at the local handicapped school, isn't there? school for handicapped children. But he, there was no help there, and he nearly drowned twice. [Peter' laughs]. So we decided that probably wasn't the best thing. And it did put you off a little, didn't it?

Peter' Yeah.

Ann' But when we go on holiday, we - we tend now to go back to the same places because we, familiarity is very helpful. And there is the pool in Florida, when we go over to Florida, that he can actually go in and he can do his leg lifts and he can do some exercises in there. And because it's in the water it's much better for him.

Peter' Yeah.

Ann' So, so that's, that's good.

 

A plan to have a paid carer fell through. They manage together and find their own solutions....

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Ann' And then we were into the summer holidays, and that was fine because I was at home. And then I said, 'Well, look, in September you're going to have to have a carer in. Because I can't go to work, you know, not knowing that you're all right.' Well, Peter didn't, didn't want anybody. 'I'll manage, I'll manage.' And as one of the OTs had pointed out, even if it was just somebody to help him to get dressed in the morning, so that he didn't have to struggle with that, and then he'd got more energy for whatever else he wanted to do. So we, we managed to find somebody, and the day before she was due to start she, she fell over or she hurt her back and that was the end of that. So there was absolutely nothing we could do. We were thrown in at the deep end, or Peter was. And he's, hasn't needed anybody.

Peter' No.

Ann' So I help, now I'm at home, I mean I can help him if he's up and about, or he can still dress himself. And he can do it all, it just takes a long time.

Peter' Yeah.

Ann' But he is able to do it. So, and he doesn't give up, you see. So I mean that's the thing, you've got to be really quite tenacious about it all. And who else have we had? Oh, we did have a urologist, didn't we? Because at one time Peter was having problems getting to the toilet, and it was particularly when we were on journeys and things. And but we've now decided that we didn't really need that. If we'd just looked, as I said, out of the box slightly, there are ways and means. And if on a journey you just stop every hour and a half, and you just get out and you go to the toilet whether you feel the need or not, then you've covered that base. I mean, still in the house sometimes it's a problem, because he can't get quickly enough to the toilet. But it's few and far between. It does happen, it is distressing, but it's not a large percentage of the time. So I mean, and, and you can get quite low about that, can't you? But then we can move on.

Peter' Yeah.

Ann' So that's the main thing, that we can move on [laughs]. So I think actually if, all in all that if we've asked for help, we've been given help. And unfortunately there isn't a lot of help that's going to change the situation, that's the thing. And in the end it's like anything, it's down to - the illness really is our illness, it's not just Peter's. Oooh! And we have to cope with it in our own way. And I suppose in some ways we cope with it by trying to ignore it, [Peter' mmm] by just doing what we can in the best way we can.
 
 

Travelling abroad can be difficult to arrange but it's worth the trouble. PLS does not seem to be...

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Ann' My perspective then. Arrange, well, holidays, I think perhaps one of, I think you can be put off by airports because - and aeroplanes - because every airport and every aeroplane, company airline seem to have a different policy of handling people with disabilities. And Peter has a scooter which we, we can break into pieces and we can put on an airline. But every airline does it in a different way. And so you could easily, you could be put off, I think. But just keep going, because the end does justify [laughs] the upset I think. Because when you get there, and, and as I say sunshine's terribly helpful, that, that justifies it. But it can be stressful for the person who's having to organise it. It's quite...

Is travel insurance a, an issue?

Ann' Not with, if we said motor neurone it would be, if we say PLS it isn't. So I don't know. So we've not had a problem. 

Peter' No.

Ann' No, we were upfront right at the very beginning, and we've not had a problem with that, have we?

Peter' No.

Is that because you think people just don't know what it is, really?

Peter' [nods]

Ann' Well, I think, I think that is probably correct. But also they obviously have a list, because they say, 'Oh, I just need to refer to my list.' 

Peter' Yeah.

Ann' So whether it's on the list or whether they confuse it with something else, I don't know. But fortunately we've not had to claim on it [laughs] because Peter's been fine, haven't you? when we've been on holiday. So I think, but I just think in the last sort of four or five years - oh, or, well, even more recently than that, people are more aware of disabilities and more helpful. Airports have got their systems going much better than they used to be. And we were, we were in Africa recently and, and, you know, there they were marvellous. They've got the wheelchairs and they've got the Ambilift. And so it can be done. 

Peter' Mmm.

Ann' It's not always easy, but it can be done.

 

Everyone has to find their own way of coping. They both feel it is important to maintain their...

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Ann' That's why I really think that, well, for us and, you know, for the way we've, we've treated this, you just have to get on with it in your own way. [Peter' Yes]. There is no right or wrong way. It's what's right for you. And people, you know, might say, 'Well, I wouldn't do it that way.' But you have to do it your way. I think that's what's important.

Ann' And also, well, from my point of view, Peter's very understanding when I want to do things. We always did our own thing prior to his illness, that we, you know, we had our own interests and - or our own careers or - and we, and I, he's not resentful of me doing things that I normally did, even when we, he can't do the same things. So I think that's - but I don't think he is [both laugh]. You know, so he's fine to let me do my thing as well. And I think that's really important. Otherwise you could feel very very resentful. So that's really important.

 

Their way of coping was to ignore the condition. It's only more recently they've admitted it to...

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Ann' [pause, reading - Peter laughs] Well, yes, Peter's just written that, 'Everyone thought I'd be dead now.' And I think a lot of people did think he would die, that he'd got four or five years really, because it was, it was quite a dramatic decline initially. And, and now he's still here [both laugh], driving us all mad. No, I just think we buried our heads in the sand. As I say we lived with the way it was. 

Peter' Yeah, yeah. Yeah. 

Ann' We didn't, I mean for two supposedly intelligent people [laughs] we dealt with it in perhaps a strange way...

Peter' Yeah, yeah.

Ann' ...but it was our way. And it's only in the last four years that we've admitted to ourselves that he has got a form of motor neurone. I mean, we couldn't even say the words really, could we? 

Peter' Yeah, no.

Ann' We can say it now because it's not, you know, as dire as a full-blown motor neurone is. 

Can you just..?

Ann' We're just grateful that he can do what he can do. And I'm just grateful he's still here, as we all are [Both laugh].

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