Motor Neurone Disease (MND)

Vim - Interview 32

Male
Age at interview: 45
Age at diagnosis: 43

Brief outline: Vim was diagnosed just over a year ago in 2006 with bulbar onset MND. His speech is affected but he can still talk, and he can still walk independently. He has retired early.

Background: Vim is a retired retail manager, married with 2 children aged 25 and 21. Ethnic background/nationality' British Asian.

Audio & video

Vim noticed in summer 2005 that his speech was changing and he felt he was losing words. At first he assumed it was a sore throat and saw his GP. Two months later it was getting worse and he went back to his GP, who referred him first to ENT and then to a neurologist. Vim thinks perhaps his GP guessed what it was but wanted to be sure before he said anything. 

In January 2006 the neurologist told him he had bulbar onset motor neurone disease, and explained that it was incurable and life-threatening. But Vim felt he could not really take this in at first and went straight off to work after the appointment. When he got home that evening his family asked him what the doctor had said and he could not remember the name of the condition, so rang the neurologist to check. It was only at this point, when his son looked it up on the internet that it really sank in. The neurologist offered to see Vim again the next day with all his family to explain, and they all came home in tears. They quickly got in touch with the MND Association and found the information provided really helpful.

For the first six months after diagnosis Vim was very depressed and spent a lot of time crying alone. He slept in the spare room and didn't want to be with anyone. His neurologist prescribed antidepressants and gradually he has become more positive and able to look forward again. All his family and friends have been very supportive and close, and he is very pleased with the support from health and social care staff.

Although his employers tried to help him stay at work, it became too difficult as his speech deteriorated and his legs and arms started to become weaker. However, they gave him early retirement and a good pension, and many of his colleagues still come and visit him regularly. They plan to set up a charity scheme at work to support the MND Association. The Citizens Advice Bureau also helped obtain the benefits he was entitled to.

Vim misses work a lot, as well as swimming, football and the gym. He stays at home during the day while his wife is working, because he is worried about falling if he goes out alone and no longer feels safe to drive, although he can still walk independently. However, he and his wife have decided to take as many holidays as possible, and look forward to getting away every few weeks. 

He feels it is good to be well informed and realistic about what will happen in future, but not to think about it too much once you have read the information. His advice to others is to stay positive and get in touch with all the organisations which can help you. He often wonders 'why me?' but every morning he thinks to himself, 'Thank God, I'm still here.'

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