Motor Neurone Disease (MND)

Liz - Interview 39

Female
Age at interview: 34
Age at diagnosis: 31

Brief outline: Liz was diagnosed with inherited form of MND in 2004. (Her father and uncle both had MND). Weakness in her legs progressed to her arms; she is now in a wheelchair. Her speech is unaffected.

Background: Liz is a former hydrologist (environmental scientist), married. Ethnic background/nationality' White British.

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Liz's father and uncle both had MND; her uncle died about 20 years ago and her father about 10 years ago. She and her sisters have therefore known for some time they might also inherit the condition, but Liz always assumed if it did happen to her it would probably be later in life, like her father. At the time of his death, Liz had already met her future husband at university, so they knew when they got married that it was a possibility.

Liz and her husband emigrated to New Zealand about three and a half years ago in early 2004, to experience a different way of life. Shortly after they settled in, Liz noticed her right foot was dropping. Given her family history, MND was diagnosed within about 3 months. It was a huge shock for both of them, and the first thing they had to decide was whether to come back to the UK. In the end they decided to stay in New Zealand as long as possible; as Liz says, they felt 'if ever quality of life was important, it was then.' She carried on working as an environmental scientist for about two years, at first full time and then gradually reducing her hours. Even when she decided to resign, her boss kept her on as a consultant so she could keep up contacts at work. 

Her husband's employers were also very helpful in letting him take time at home to look after her, but eventually they decided to employ a paid carer so they could each have some independence. Liz felt guilty that her husband had to do so much for her, and feels much happier having someone whose job it is to provide care. It has made her relationship with her husband feel more normal again. Deciding to use a wheelchair full time also made life easier and more independent in many ways, especially when she got an electric wheelchair. It meant they could go out together again and he could walk by her side instead of pushing. However, as the weakness in her arms has worsened, it is a source of sadness for Liz that she can't hug her husband or reach out to touch him.

In 2007, they returned to the UK so they could be nearer family and friends. Getting a new care network established here has been tiring and stressful, and she misses the hospice in New Zealand where she had a group of friends who would meet regularly to chat and do things together. But she still enjoys life and has a lot of support from family and friends. Most of the time she feels content 'living in the moment', enjoying company, eating out, going out for the day. Sometimes when she thinks about the future she is scared about losing that quality of life, and worried about what her husband will go through. Meditating helps her restore a sense of inner calm and reflection on the good things in life. She says, 'If you didn't have death, you didn't have disease, then you wouldn't quite see the richness of life either.'

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