Motor Neurone Disease (MND)

Michael - Interview 29

Age at interview: 40
Age at diagnosis: 39

Brief outline: Michael was diagnosed less than a year ago in 2006 after noticing weakness in his right arm. His arm weakness remains his main symptom, and it has got worse. Currently he is on sick leave from work.

Background: Michael is a business manager (motor sales), married with 2 children, aged 11 and 9. Ethnic background/nationality' White British.

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Michael noticed weakness in his right arm in late 2005. His doctor referred him to hospital. At first the consultant specialist thought it might be a virus, but referred him to a colleague for further tests. While he was still in hospital, the results came back and staff said they would rather tell him once his wife Sam had got there. Immediately Michael suspected it was bad news. To be told it was MND was 'crushing, devastating' and Michael felt there was no hope left.

Deciding what to say to their young children was one of the worst things. The children know the name of the condition, and that their father may need a wheelchair, but Michael and Sam decided they did not want to tell them everything. They want the children to have as happy a childhood as possible, and do not worry too far in advance about what will happen. They have read the MND Association booklet about telling children, but they would have liked more help in deciding how to talk to the children.

Michael was so shocked by the initial diagnosis that he became quite depressed and found it very hard to come to terms with what he calls 'the future you won't have'. He gets easily frustrated by not being able to do ordinary things like hold a pen or brush his teeth, though he tries to find practical ways round these problems. Not being able to hold a pint or wave a football scarf has also been difficult for him. So far his main symptom remains arm weakness. He prefers not to think very far ahead about what the future holds. His wife takes on more of the responsibility for finding information and planning ahead, which makes him feel both grateful and guilty. 

He has tried to avoid thinking about how much time he has left. When his GP started discussing this with him recently, it was another big emotional set-back, and Michael had to stop working because he was feeling too fragile emotionally. He now also needs more help using the bathroom, and it is hard to ask work colleagues to help. Michael works in motor sales and loves his job - driving and cars are still his passion - but he is beginning to feel he wants to spend more time enjoying life with his family while he still can. Although he gets very emotional very easily, he finds humour helps. His advice to others - if possible - is not to allow themselves to be as overwhelmed by the diagnosis as he was and to 'get on and do as much as you can earlier on'.


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