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Vim - Interview 32

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.

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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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His wife has to leave early for work and gets very tired caring for him as well, but they need...

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What about your wife? Has she met anybody else who's a carer?

No, she hasn't, not yet. I think because she's working as well. Mind you, she leaves around 5 in the morning, she doesn't come back till about 2.30 in the afternoon. And then she's so tired that she needs to sleep for one hour. Then she is looking after me. I think it's too much for her at the moment. She works for security at the airport. So it's half an hour travelling as well. And then to run the house you can't have one person just working. You need both incomes to pay for a mortgage.

 

He couldn't take in how serious the diagnosis was. He had to ring the doctor to ask what he'd...

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OK. And when you first saw the neurologist, did they mention motor neurone disease?

No, they, he didn't. But, mind you, with a check-up every single week, I think it came to the point where he knew what it was. But, mind you, when he did diagnose and tell me - because to tell you the truth I did not know anything about what motor neurone disease was - he said to me, 'Right, this is a very serious condition. It is life-threatening.' And I just walked out and said, 'Okay' [laughs]. Because apparently I didn't know what it was. I thought, okay, it was something that could get cured as time comes. So when I came home, my son actually asked me, 'Dad, how did the appointment go?' I said, 'It went fine.' And he said, 'What did the doctor say?' I said, 'He said something, that I've got something beginning with M, MS?' He said, 'It's not MS?' I said, 'No, I'm sure he didn't say that word.' He was - then I phoned the doctor up and I said, 'Excuse me, can you tell me what it was again, because my family wants to find out.' He goes to me, ' Mr [own surname], I did tell you what it was. You can write it down. It's motor neurone disease.' And that's when my son looked it up on the Internet. That's when it really hit us. And then he actually called all the family in. He goes, 'You can bring all your brothers, sisters, nieces, and I will explain it to them.' So the next day we actually went to the doctor. He called us in a private room and he told us. And everybody came out in tears.

And just, just going back to that bit. I mean it, it must have been awful for your son'

Yeah.

'looking on the computer and seeing.

Yeah. 

I mean, how, how did he feel about that?

Well, he took it really serious, and he told me to have a look. That's when it really hurt me. I think to tell you the truth when I found out what it was and what it was going to, I think six months I was like in a corner crying every single day. And then, I don't know, after six months I thought, 'Enough is enough. I've got to try and stay positive and live as long as I can.' But then I've got a lot of support from my family, my GP, Social Care, occupational therapy, everyone. They're all a great help.

What about your, your wife's reaction at that point?

She's always in tears, even when she looks at me now, in pain, she's always sort of got tears in her eyes. She's always trying to say to me, 'Stay positive. It's not what you think it is. It'll be curable.' I don't know. I think when you've got to go through it, it's really hard. I mean when you hear it from someone that they've got motor neurone disease, you think, 'Okay, yeah.' But when it comes to you, I think that's when you feel it.

 

He read all the MND Association information so he knew what he was facing, then put it aside. The...

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When I got in touch with the Motor Neurone Disease Association, they were so quick. I mean, I could ask them anything about my condition, they would tell me. Like when the flickering started in my arms and legs, they said to me, 'Yeah, that's quite normal.' But they're very, very helpful. I mean, at least it's in your mind, 'Yeah, this is what's to come, this is how it's going to be.' And with the information-wise they sent me a big booklet with the, all the information on it, and I read all that. It's very, very helpful.

So you read all the way through?

Yeah.

Because sometimes people don't want to read.

No, no. I did. 

Yeah.

Yes. I think it's really nice to know what you're going through. At the end of the day it might not happen to you, but then it's always nice to know. I mean, you, I've read it, it's gone out of my mind, I've put it to one side. And I think the only thing you can do is stay positive, and not...

Okay, so you sort of, like you, you wanted to know'

Yeah.

'at that point, but then you just'

Yeah.

'put it aside?

Yeah, mm.

Was there anything about the information that you got from the hospital, or didn't get, that you think could have been done differently?

I think if, they should, like when the consultant actually knows what it is when he diagnoses you, I think the information should be available there and then. I think the Motor Neurone Disease and the doctors, they need to communicate, or they should have information [brief microphone interference] available at the hospital.

 

His employers were helpful and tried to find alternative work, but he had to stop work quite...

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Because I was a manager for twenty years there are a lot of people. And I think a great help is my general manager at work. She's helped me a lot, and she still comes to visit me like every month. And now they actually want to set up a charity for Motor Neurone Disease Association within the stores. So that's going to be a huge success.

So tell me a bit about work and how it affected work, and.

Mainly - because I used to do a lot of speeches at work - well, they all noticed that my speech was slowing down as well. I think that's when I went to the doctor as well, just for a check-up. But apparently when I was diagnosed this got worse really, really quick and the walking, climbing the stage all got affected. And about six months later I had to just retire off work.

Did they try and find alternative work for you in the meantime?

They were a great help, like sort of telling me to sit in the office, do the paperwork. But I got to the situation where I could not even sit for a long period. And then my speech really gave me up. But they were a great help.

And I think you said they made it possible for you to retire?

Yeah, on early ill retirement. So because it's a big company I'm, was well looked after. So I think that's a good sign.

So financially, how, how have things changed for you financially?

Financially, I think I'm the same to what I was working. Because of the company and twenty years' service, the pension came out better than what I expected. So it's not like you're going to lose your house, and you've got one big headache. So the work people that way have looked into that, all the bills, my mortgage payments, and then retired me off in that way. And I think they've been a great help.

 

He likes to get into the sunshine and plans holidays every few months.

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At the moment because I've got from my GP and my consultant, it's, 'Just do things that, what you want to do. Go and see places that you want to see.' At the moment I think that's what I'm doing and it's working. It's sort of one thing off your head. I've tried, I've been to India, I've tried like staying in the sun, which obviously helps a great deal, and I think it just relaxes your mind. I mean, I know there's people out there who think they can't afford it or - but I would say, 'Give it a go.' It relaxes your mind.

Mm. So how often do you go on holiday at the moment?

At the moment I go like probably, maybe every couple of months, maybe at least three or four times a year, maybe even if for the week, just to get away. Enjoy it while you can. You don't know what tomorrow's going to bring.

 
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He advises people to stay positive and get in touch with any organisation which can offer help...

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I would make one point. It's people who are suffering from this, I would say to them is, stay positive. Get in touch with all, anyone you can, like Social Services, the council, Motor Neurone Disease. They're all a great help. Anything you want, they'll help you. Because there's no point just sitting at home and thinking, 'Okay, I've got this. I don't want to know anyone else. I don't want to get in touch with anyone.' Just stay positive. I think you'll live longer.

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