Motor Neurone Disease (MND)

Phil - Interview 28

Age at interview: 60
Age at diagnosis: 59

Brief outline: Phil was diagnosed just over a year ago, after nearly 2 years of leg weakness. He is still able to walk at home but uses a wheelchair and scooter outdoors. He has some weakness in his right arm.

Background: Phil is a retired transporter fleet controller, married, with 2 adult children. Ethnic background/nationality' White British.

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Phil first noticed that he was losing feeling in his legs over three years ago in 2003. At first it was assumed he had a cardiovascular problem, but tests came back negative. Later he tripped over his foot and broke a rib, and at this point the GP suspected a neurological condition. After some months of tests, motor neurone disease was diagnosed. He and his wife Janet felt the neurologist was excellent in the way he told them, but Phil was so shocked he found it hard to think about anything except the fact that he had a terminal illness. The neurologist said he would refer Phil to another neurologist who specialised in the condition, but somehow the paperwork got lost. After two months of waiting to hear and feeling desperate, Phil contacted the Motor Neurone Disease Association to ask for their help. Within 24 hours he was put in touch with the specialist and the local MND Association nurse, and things began to improve.

Phil was impressed that the specialist gave him a tape-recording of their consultation, so he could listen to it again. He was also glad the specialist told him he could book a summer holiday. Up till then he had felt there was no point planning anything in the future. Now he and Janet take the view that they want to make the best of whatever time they have left together, and try to put the condition to the back of their minds. At the same time, he feels it is important to be realistic and acknowledge what is happening to you so you can get the help and equipment you need. The staff at the specialist clinic have given excellent support and advice. As Phil's leg muscles have become weaker, he has had changes made in the bathroom, and bought himself a wheelchair from a catalogue. He has a car adapted so he can use his left foot to accelerate, and loves the freedom of driving.

His employers were very supportive, and enabled him to stay at work as long as he felt he could continue. He has recently stopped working but is still on sick pay from his company. Phil wants to ensure that he and Janet have enough income to live on now, but also that she has enough left once he has gone. He advises people to claim every benefit to which they are entitled, so as not to use up their pension more than they have to.

Phil and Janet have a very close relationship and draw on each other and their friends and family for support. Having a sense of humour has helped them deal with some of the more difficult aspects of the condition, and personal care. Phil feels it is vital for his wife to keep up her own interests and social life, as well as doing lots of things together. They feel closer to each other now than ever.


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