Motor Neurone Disease (MND)

Peter - Interview 20

Female
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.

Audio & video

(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.

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