Motor Neurone Disease (MND)

Liz - Interview 22

Age at interview: 45
Age at diagnosis: 37

Brief outline: Liz was diagnosed with rare inherited (familial) form of MND 8 years ago (1998). Sixth member of her family to be diagnosed. Has weakness in her arms and legs, and some speech difficulties. Has a PEG but does not use it yet.

Background: Liz is a former classroom support worker for special needs, divorced, with 2 children aged 18 and 17. Ethnic background/nationality' White British.

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Liz's mother died of motor neurone disease when Liz was 3, but she did not discover this was the cause until she was 19. Two uncles also died from MND, and her maternal grandfather probably did too, although his death certificate said the cause of death was 'creeping paralysis'. Liz and her sister got in touch with the newly formed Motor Neurone Disease Association in 1980, but at the time were advised it was just coincidence and not something they should worry about. When Liz's sister was diagnosed in 1992, it became obvious that the family was affected by the rare inherited or familial form of MND. By this time, Liz already had two young children. Her sister died within 2 years of diagnosis.

About three years later in 1998 Liz herself started feeling heaviness in her legs and was referred to a neurologist. MND was diagnosed, and she was put straight onto riluzole. She wonders if this has helped slow the progression of the condition, as she has lived years longer than other members of her family. A cousin has recently been diagnosed and her condition is deteriorating much faster. 

Telling her children was the hardest thing, because they had seen their aunt with MND and knew about the condition. She promised them she would fight it, and wants them to remember her as someone who lived as full and active a life as possible. If she had known the family had the inherited form of the condition she is not sure she would have had children, but she would not be without them now. She feels they have given her something to live for, to support them and see them through school. The children themselves both say they do not want to have any children, and they do not yet want to have screening for the SOD-1 gene mutation because they would rather not know. 

Liz's husband found it very difficult to cope with the diagnosis, and they split up two years after she was diagnosed. She lives in a flat with the children which they have had adapted so they can all stay there. She has a carer every morning, and all day one day a week. Liz carried on working as a classroom assistant until three years ago, when she was finding it difficult to walk around at school and could no longer talk loudly enough in class. Giving up work and becoming dependent on benefits was a very difficult decision, and she finds it frustrating that she has to be reassessed for suitability for work in order to keep her benefits. 

Liz has since become a visitor for the MND Association. Although she uses a wheelchair and scooter she can still driver an automatic car, and this has been really important in maintaining her independence. Her speech is slowly becoming more affected, and she has had a few choking fits. The children have had to call an ambulance twice. She has found that staying calm and leaning forward helps her recover. She has had a PEG feeding tube fitted, but so far she has not needed to use it. She has been told she may need it replacing before too long, and sometimes feels perhaps she should have waited a bit longer before having it.


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