Motor Neurone Disease (MND)

Judith - Interview 12

Age at interview: 58
Age at diagnosis: 55

Brief outline: Judith was diagnosed with Progressive Muscular Atrophy form of MND two years ago, after consulting two neurologists. Now she uses a wheelchair and mobility scooter.

Background: Judith is a retired English teacher, married with 2 adult children. Ethnic background/nationality: White British.

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Three years ago (2003) Judith noticed it was less easy to take part in Scottish dancing and yoga, and her feet started flopping when she walked. She had read a novel about someone with MND and wondered if it might be what she had. Her GP thought it might be myasthenia gravis, and referred her to a neurologist. After waiting four months to see him, he referred her for a second opinion to a professor at a specialist centre. She waited another three months for the appointment with the specialist, who admitted her for three days of hospital tests. By the time she was eventually diagnosed with a form of MND called Progressive Muscular Atrophy she felt sure she had the condition.

The professor explained that not everyone gets all the symptoms, which Judith found helpful in coping with the condition. She carried on teaching part-time until a year ago, when  it became too exhausting. She also stopped driving, and now has a shopping scooter and an electric wheelchair. They have an adapted car which takes her wheelchair, but it has not worked out as well as they hoped, as she finds it difficult to see out. 

They have had the bathroom at home adapted, and her husband has built a small ramp to get up the two steps to the bathroom, saving the cost of a stairlift. He has also made some lightweight transfer boards to assist in getting from one seat to another. She has a mobile arm support to help her eat independently. She feels her specialist care and services have been very well coordinated and staff have been very sympathetic and helpful.

She felt angry at first about having MND, and worried about becoming a burden on other people, but she is determined not to let it destroy her as a person. She takes a mild antidepressant to help with feelings of tearfulness, and also takes riluzole. She tries to live life to the full from day to day and not to dwell on the condition. She has taken up creative writing, which she finds very satisfying. She believes it helps to make daily tasks as simple as possible, and to recognise when you need to stop trying to do particular tasks and seek alternative solutions.

At the moment Judith is enjoying life and does not want to think much about how the condition will progress, but in future she may consider making a Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' to say she would not want to be resuscitated.


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