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Motor Neurone Disease

People's stories

Rarer forms - PLS (primary lateral sclerosis)

Peter - Interview 20

Peter - Interview 20

Age at Interview: 64
Sex: Female
Age at Diagnosis: 56
Background: Peter (aged 64) and Ann (aged 58) are a married couple, both retired teachers, with 2 adult children. Ethnic background/nationality: White British.

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.

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Their way of coping was to ignore the condition. It's only more recently they've admitted it to themselves. It helps that it is PLS. [Peter cannot speak much].
Print 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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