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Motor Neurone Disease (MND)

Work and career

Own work and career

Most people who talked to us had given up work, but some were still working and many had continued working for some time after diagnosis. Many of them talked about how important work was for them, both emotionally and financially. 

 
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He wants to continue working - it makes him feel useful and he enjoys interacting with other people.

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Age at interview: 55
Sex: Male
Age at diagnosis: 51
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How important is it to you to be able to keep working?

The fact is that it's very important for me, because I've been working in this area for a long time, and I'm with the same company since now twenty-five years. And for me it's very important because it's the progression of my career, leading me to do now application of a lot of my experience in the research and technology, where I'm working. So it's more intellectual rather than physical. Because I know that MND doesn't affect my intellectual capability etc, so I can use computers, I can do it. So it's for me one way to still exist and still be useful, and feel that I'm not useless. So it's very important, yes, to go every day, interact with people. And by luck I still can speak, and that's very important. I can communicate with people.

I've started now to have business trips again, like I used to have. And when I went to Amsterdam I was very happy because it was a conference I used to be previously. And I've seen people I have not seen for many years. And of course they were surprised to see me in a wheelchair, but they saw that I was still able to participate and contribute. And that was a very good feeling.

 

Continuing part-time work as an occupational therapist is psychologically important. Having MND...

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Age at interview: 39
Sex: Female
Age at diagnosis: 38
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Can you tell me a bit more about the benefits you got from continuing to work?

I think mentally a huge benefit because I can't do anything unassisted now. And I feel that I have more independence at work. I'm in my electric wheelchair in work because I'm actually based within a hospital. It's already designed for wheelchair use and special disabled toilets. Jobcentre Plus pay for someone to assist me because I can't actually do the physical job that I used to be able to do. But I can still use my clinical expertise to assist patients and I think it actually helps them to see me because they're elderly patients who have got a number of medical problems and they're finding it hard to cope at home. So when I say, 'Have you tried this?' And they say they don't like it. I can sort of say, 'Yeah, I tried it and I didn't like it either'. Or I can recommend things and perhaps seeing someone who is disabled recommending things for them, I don't know perhaps they find it a benefit. Perhaps they are absolutely in shock when they see me trundling up in my wheelchair. I don't know but it seems to be going well. 

And as I said, the, the support I get from my colleagues and that, and even that it's just that social interaction I get. If I wasn't at work, all, all my family and friends are in work. I would be stuck on my own and the only contact I would have would be with Homecare in the mornings and at lunchtime. I can't do anything for myself in the house so I'd be sat with my own, just with my own thoughts and that's when you become depressed. So it, the longer I can stay in work the better. I know I'll have to stop one day but it won't be without a fight [laugh].

You're currently doing two days a week.

In the summer holidays but when the children go back to school, I'm going to go back to three days a week then. Yeah [mmm].

And they come and pick you up do they?

I'm, unbelievably I'm still driving at the moment. My husband has to walk me to the car and he throws me in the car and puts my seatbelt on but other than that honestly the DVLA and my consultant said they're quite happy for me to drive [laugh]. So I still drive at the moment with special adaptations in the car. And then when I go to work. then I phone my colleagues in work and they come out and meet me with my wheelchair and help me to transfer from the car into my wheelchair then. And again at the end of the day they help me to transfer back into my car and my mother's waiting for me this end to help me transfer back out of the car again. So it works well.

 

He knew he could no longer demonstrate cars. He worried how his employers would react and how he...

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Age at interview: 60
Sex: Male
Age at diagnosis: 59
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I'd fallen a number of times in, particularly at work, and people noticed that. And you sort of laugh it off, 'Oh, there's water on the floor' or, you know, 'I fell over something.' But you're the only one falling over, so it tends to point you out to people. But it's, it's how you communicate, particularly at work, with your colleagues, but most importantly with your company. You don't know how they're going to react. You feel very insecure in terms of your future. Just because you've been diagnosed with a terminal illness doesn't mean all your bills are terminal. They carry on. You know, you've still got to live, you've still got to do the things that you've always done. Nobody comes charging out the sky with this thing that says, 'Don't worry. We'll pay everything from now on.' You've still got to earn a living, you've still got to make the decisions for that living. And I found it very, very traumatic in terms of when I communicated what was wrong with me to my company and my colleagues at work particularly. And deciding on it was, as I say, a very, very difficult decision. Fortunately you're not put in the situation that if you do have to go sick for whatever reason and you can't go to work that your GP will actually put down motor neurone disease. They will put down that, you know, you've got a, something wrong with your leg or whatever it might be, the outward sign, rather than communicate that you have a terminal illness. Fortunately I didn't need that facility in real terms. But obviously I chose how I told my company and when I told my company.

What would have been your anxiety about if the GP had put motor neurone disease? What would that have meant?

Well, if the company had seen it and said, 'Hang on, you've got a terminal illness' you know, I don't know how they would have reacted, you know. Would they have said, you know, 'We're going to terminate you from now' sort of thing, or, 'You...'? And particularly when I was in a job that I loved, which was demonstrating motor vehicles. And you can't demonstrate a motor vehicle if you can't drive it. And of course I couldn't drive. And I'd been doing things like training while this diagnosis had been going on, and I was training other people and I'd got other skills that the company could use.

 
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She can still drive to work and enjoys the independence and the income. She doesn't want to think...

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Age at interview: 54
Sex: Female
Age at diagnosis: 52
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Yeah, so being able to drive, and then going on from being able to drive to my job, the fact that I can still drive is fantastic. Because as I said to you earlier, I stopped going on trains on my own because of the problem, and anyway I couldn't walk far enough now to get on a train. I can drive up to London' They've got a parking space for me, I park the car, go in, do what I want to do, come out, get in the car and drive home. So it gives you a lot of independence. And I can still do my job, almost as well as I did it before. Nowadays I wouldn't go up into central London hospitals, whereas before I would do, because I'd just get on the Tube and go from one to the other, or I actually used to cycle up occasionally. So my job has really changed. And I'm lucky, really, in the type of job I do that I could sort of alter what I do and still manage to earn quite a good salary' And I like the fact that I'm independent. I have my own money and I can do what I like. And if I want to go and buy expensive clothes or spend loads of money on my children, which I do, then I can do it. And so again I don't want to think about the time when I won't be able to do it.

Clearly, the type and progression of each person's symptoms was important in deciding whether to continue working and for how long. But being able to stay at work also depended on other factors, including the nature of the work itself, the physical suitability of the workplace, how supportive employers were prepared to be, availability of aids and equipment, and the practicalities of travelling to and from work. 

Some people felt lucky to have a job they could carry on doing despite their symptoms, while others could not continue doing the same thing and either had to give up work or move to different duties if they had a supportive employer. The Access to Work scheme had helped several people by arranging travel and equipment, though a few reported some initial problems sorting out reimbursement for taxi fares.

 

He could continue teaching while only his legs were affected. His employers were very supportive...

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Age at interview: 45
Sex: Male
Age at diagnosis: 42
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Yeah, I kept working until about three weeks ago, actually. I just quit now. So, yeah, so I kept working, from diagnosis I kept working for a good 2 ' years. And that's you know, it's like I mentioned about the money, the longer you can keep working the better, because you need the money.

And how have your employers, how did they react?

Right, they, they've basically been helpful. They because I'm a teacher and they made some changes like I would always teach in the same room, which is quite unusual in, you know, it don't normally happen in the college where I work. So that made less moving around And then I also got onto, I mean they didn't do this, but I got onto this organisation called 'Access to Work' and they're a very good organisation. They're much better than the NHS or Social Services. They actually, if you need something they get it for you. And they got me like a little wheelchair, much smaller than this one and that was while I could still walk but I was just getting tired. And that's the first wheelchair I had, and I had that at work. And they also got me a tablet PC which was wirelessly connected to a projector so that I could continue to teach, because it's quite easy to work the tablet PC, you know, you don't have to stand up and use an overhead projector or whatever. So they got me those things, and they're quite expensive items. So altogether that might have been '10,000 worth of stuff. But because I had those things, that meant I could stay in work for longer.

And they also paid, when I couldn't drive to work anymore, they paid me to pay somebody else to drive me to work and back every day. So without that I couldn't have carried on either. So, so they were very helpful. But my employers have been helpful but they, they haven't had to do a huge number of things to be honest, because the place where I worked was already accessible because it was a college and they made some changes. And they've been supportive, you know, all my colleagues have been supportive and everything. And then at the end of the day I've finished work and I, if I'd wanted to keep, keep on trying to work then they would probably have tried to help me to keep on.

So, yeah, so I'm not unhappy with work, they've been fine. And Access to Work is a, is a good organisation. The only thing is they're a bit slow. So again [laughs] you know I got on, I got in touch with them straight away and that's really good because they just sort of take a while to get things done. But when they do get things done it's, it's really helpful.

OK. So they are a good scheme to use.

Yeah, definitely. If anybody's in work they should get onto them straight away. Yeah. Even, I mean, even if, if you know you've got motor neurone disease then you know you're going to need things so the sooner you get started the better it is.

Also tell me about the benefits perhaps of continuing to work, some people might.

I mean I was lucky in my job because it's teaching so it's basically talking and writing. And the nature of the motor neurone disease I've got was in my legs and then, and now it's come into my arms, so I have been able to continue with it for a long time. And there was quite a long time where of all the things that I used to do, teaching was the only thing that I could still do just as well as before. You know, nearly everything else, I'm like worse at, you know. I can't do the cooking and can't do the housework and can't drive my son anywhere and there's loads of things that I can't, couldn't do properly but I could still teach and I was still getting good results and it was still working aand the students weren’t complaining and everything was, so for my personal sort of, you know, it sort of buoyed me up, you know, to be able to keep working. So, so that was really useful to do.
 
And then in the end I, I’ve finished now because with my arms getting weaker it’s gone more the other way but I don’t think I can do the job quite as well as I used to. And then, because I feel I’m not doing the job well then that’s actually pulling me down a bit, emotionally. So that’s why I finished really. I mean I could try and struggle on but I’d be struggling on and doing the job not properly and that’d be making me feel bad. So I think for as long as you, you feel that, that the job’s helping you psychologically it’s definitely a good thing. And I’m really pleased that I did stay in work I mean, when I got diagnosed I thought I’d quit straight away [laughs] And then I thought, “No, I’ll, I’ll carry on for a few months and get these particular groups of students through their exams and then I’ll probably have to quit”. And then I carried on for another year after that. And then I carried on for another year after that. And all this time I was thinking, “I’ll quit soon”.
 
Or I’ll have to quit soon. You know, and in the end I have obviously had to finish at some point but by just sort of keeping on going I think it’s been helpful, yeah. Yeah.
 

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

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Age at interview: 45
Sex: Male
Age at diagnosis: 43
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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 applied for Disability Living Allowance but carried on working until he could no longer hold a...

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Age at interview: 59
Sex: Male
Age at diagnosis: 55
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I was told at a fairly early stage by the clinical specialist that I would be entitled to Disability Living Allowance. We filled in the application form, which I didn't find difficult, sent it away, and almost immediately we were granted it. I was still working. I worked for the first three years after diagnosis. I'm sure there are others who, who had to give up straight away, and this benefit would be of great benefit to them. And if - I know that if there are difficulties filling in the form, then there are people who will help you. Other benefits I had more difficulty with. Thankfully we've got a, a military pension and some pennies in the bank. I would hate to be in the position where we had nothing and I had to give up work immediately.

So what was it like continuing to work after your diagnosis?

It was okay. I was a golf club secretary. Most of the, the day-to-day tasks I continued to perform. I, I gradually became less and less able to write, which made taking minutes at meetings very difficult. But the club president was kind to me, and the club treasurer, all took notes. So between the three of us I was able to produce a set of minutes. Keyboard skills at that time were not too affected at all. But in the end I couldn't hold the telephone and take notes at the same time, and that was quite an important part of the job, taking bookings for parties etc. And so we decided to call it a day in April 2002 - 3 - 4 [checking with wife], 2004. And it gave us the opportunity to enjoy some quality time together. But from day one I, I asked the club president if he would inform the council of management and I told all my work colleagues, all the members there. I, I was aware that living in a village, rumours are rife. I thought by coming clean and telling everybody exactly what was going on, that would solve that problem, and I think it did. Yep.

 
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Using Access to Work for taxis was a great help once they'd sorted out how to claim the fares...

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Age at interview: 59
Sex: Male
Age at diagnosis: 58
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So I got in touch with them [Access to Work] on Monday and said about getting Ken to work by taxi. And they were brilliant. I had to get three quotes from different companies, tell them what it was over the phone. I think they got back the next day, agreed that they would pay the majority of it, and we had to pay '2.25 for each trip. It cost '35 a day to get Ken there and back and we had to pay '2.25 for each trip. So it was '4.50 a day, which we felt was quite good, because obviously we were paying for the car and petrol and everything.

Have you given up the car?

Yeah, yeah. So we set that up, and so by the time Ken went back to work it was up and running. Access to Work needed an invoice first before they would pay, which meant the taxi company would be paid behind. Ken would travel for a week, they wouldn't get their money till a week later. They weren't willing to do that. So in the end we agreed to pay it, and we claimed the money back ourself. There was a bit of a mix-up at the start with our bank number, so we must have paid it for about a month before we got any money back, but we did get it all back. And once it was up and running, we sent the invoice off weekly, within a few days it was back in our bank account. So that worked really well, didn't it? And the taxi driver, because we got to know him quite well, didn't we? He was very nice'We got quite friendly with him in the end, he was really nice and helpful. And so he'd pick Ken up at half past seven in the morning. So that was a bit, we had to get up early to get Ken showered and dressed, because I needed to help him, get him downstairs, get him his breakfast. I had to get you ready, didn't I? So then Ken would go off in the taxi and I used to go off and catch the bus, because I don't drive unfortunately.

A few people were worried about telling their employers or their colleagues. One person kept it secret for two or three years because his company had a reputation for making people redundant. However, most people said when they did tell their employers they were helpful and supportive, and some offered generous financial help with pensions, long term sick leave and paying people a full-time salary even if they went part-time. One person said his employer did not do much to help, but felt that was mainly because there was actually little they could do.

As MND is more common among people over the age of 50, some people had already retired before diagnosis. 

 
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He was glad he'd already chosen to retire before diagnosis, rather than being forced to stop work.

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Age at interview: 60
Sex: Male
Age at diagnosis: 57
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When, when you retired, was that because of the symptoms, or was that independent?

No, no. Totally independent. And I'm glad it was. Because had I retired after the diagnosis, I would have felt as if I'd given in to it, whereas I retired about 6 months before, an engineered retirement through a company take-over. And, you know, it was something I wanted to do, rather than having to do.

Others were able to continue working to retirement age or arrange early retirement. For some people, early retirement was quite welcome, offering a chance to do something else with their lives after a long career. On the other hand, some felt the diagnosis had cheated them of things they had been looking forward to in retirement.

 
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He gave up work almost immediately. He enjoyed teaching but the job had changed, so he was glad...

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Age at interview: 60
Sex: Male
Age at diagnosis: 56
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So I went back to work, I was a teacher. By this time I was having trouble writing on the board. I discovered thirty-something years too late that the best thing to do is to pick out the worst kid in the class and ask them to write your notes on the board. That keeps them out of mischief and makes them feel really wanted. So it worked wondrously. I don't know. It may be the kids knew what was wrong with me, perhaps. Or they certainly knew something was wrong with me. And they couldn't have been kinder. Some of them were upset, I suppose.

Anyway I gave up work almost immediately. I gave up work a week later. It was quite convenient. It was half-term, all the exam preparation was over. I said goodbye to my A Level groups and GCSE groups. It didn't really matter. And my wife and I decided that, well, she decided to give up work too, and we decided that we would enjoy what little bit of time we had together.

I'm not the sort of person who gets very emotional normally. I tend to be relatively cheerful. I'm the sort of person who's, you know, the glass is half full rather than half empty. I tend to be fairly positive about things. As I said, my first reaction when I knew I had motor neurone disease was thinking, 'Oh, good, I don't have to do five more years of this'. It wasn't as though I didn't enjoy teaching. I enjoyed a lot of it. But teaching was changing. I was old person at this, an old man. I couldn't be bothered with some of the changes. I didn't see the value of them. We'd become pawns for the politicians, so the paperwork consequently increased and increased. And when you, when you've taught for 35, 34, -5 years as I had, these things come round, you know. Somebody with a new broom comes in and wants to change things and you keep becoming an old duffer. You think, 'Oh, that didn't work twenty years ago.' And you catch yourself being an old, a grumpy old man, or a codger. Well, I wasn't grumpy. I've always been quite cheerful.

Others wanted to stop work so they could spend the maximum amount of time with their family. One man commented that it was also a question of dignity and not wanting to have to get his work colleagues to help with personal tasks.

 

He enjoys work but has stopped at the moment partly because he doesn't like asking colleagues for...

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Age at interview: 40
Sex: Male
Age at diagnosis: 39
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Certain physical difficulties make working from somewhere other than home quite difficult. Should I need to use the bathroom, I find it at times certainly impossible to do my own trousers up, and sometimes quite difficult to do my flies [laughs]. Them's the breaks. To ask your wife to assist you to get back dressed again, I can live with that. Certain colleagues at work, mm, maybe not. I work with some good people, but I think you can ask too much [laughs]. So that's had a bearing on it. 

I'm not working at the moment partly because of that, partly because I did get quite low. I had a conversation with my GP regarding, as it turned out I was talking about how I was feeling, and it progressed into a conversation about prognosis. How and where it got there, I don't know. It came as quite a shock to me. Whether or not he thought I was fishing, I don't know. But we kind of discussed it. And it was like, 'Oh, my God. Not ready for that.' Crush number two. 

Was that the first time you'd really thought about prognosis?

[sighs] I'd known the situation isn't great, but that was a fairly pointed conversation in that respect. I don't do pointed conversations. That really did set me thinking, really, 'Well, if I have only got a sort of fairly finite amount of time left, no matter how nice the people you work with are, do you want to spend that time with them, working, when we all strive for a, a home-work or a work-home balance?' I love my job, I loved my job. In some ways it loved me. I found something that I was able to do and enjoy doing, which many people don't. Having said that, when the chips are really down, do you want to spend your time doing that? And really you go to work to support your home life. And with respect to them, 'No, I don't.' As I feel at the moment I don't, don't know that I want to go back. Maybe when my doctor's note runs out I might have come to terms with things and may consider it slightly differently. I don't know. But at the moment, certainly, I don't feel the want to be spending such a large amount of my time away from the people who matter the most to me.

Would it financially be possible for you to stop and stay at home?

I think when the benefit system starts to kick in properly, then, yeah, just about. We'll have to make adjustments, we'll have to tighten belts and do less of certain things. But it's probably more important to me - it is more important to me, no probable about it - it is more important to me to be around those people and share as much quality time with them as I can. I have to make up for a lifetime without them.

Deciding when to give up work had been a difficult decision for some people. Having to give up work left a big hole in many people's lives, and some found it hard to come to terms with the loss. Some were upset to feel they were no longer so strong and independent, and some disliked relying on benefits after working hard all their lives.

 

He enjoyed work and misses it very much. He gets involved in other activities, especially...

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Age at interview: 56
Sex: Male
Age at diagnosis: 53
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Edited text prepared by Peter

I mean I don't know whether, you know, if you enjoyed work or didn't enjoy it, but what kind of a difference has it made to you personally giving up work?

It was devastating. I happened to have very good relations at work with some very nice people, both colleagues of the same grade and of higher grade, including my line managers. I had absolutely no problems. They were always very understanding of the staff, so I had similar good treatment before I was ill and when I was ill. It was really more of a family atmosphere than an office, although it was run very efficiently, and we all had to a great extent good fun - well, if you can call a government department 'fun". From that point of view I was extremely disappointed to have to retire, although retirement in itself, especially early retirement, isn't a bad thing if you have the means, because then you can do things you never had the time to do in the first place. It was, however, a serious disappointment. At the beginning, when my legs were still working a bit, I had ideas that maybe things wouldn't be so bad. Unfortunately as the illness progressed it's now become more and more of a drain. I suppose there are advantages to not working. That stress has gone, although my stress was minimal compared to some.

So it's left quite a hole?

Yes.

And what things have you done? You were saying, you know, it gives you time to do things that you might not otherwise have done.

Well, it does give you time to do things that you might not otherwise have done, but at the same time if you're not able to get out and about as much as you'd like, and in ways you'd like, it curtails your abilities and your movement. I happen to be politically involved and always have been. To some extent I've retained that. Furthermore I have always been interested in various things that go on around me - in nature, in rambling, and other things like collecting little cars and whatever. So I can't say I'm bored. Life is different. Life is frustrating because not everywhere is as yet disabled-friendly. Although the law now states that public places should have disabled facilities, it's not always as easy as all that. The biggest difficulty is going to friends, most of whose houses aren't disabled-friendly, but I get round that. There are lots of pubs and restaurants around here, there are lots of walks and many places to go to which are accessible for disabled people. We have amongst other venues a favourite Thai restaurant that we go to. I've got political meetings and functions that I, or we, attend. So I'm not completely out of things, except that I'm seriously constrained in what I can do and where I can go.

 

He was proud never to have had a day's unemployment. Realising he was not going to work again was...

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Age at interview: 76
Sex: Male
Age at diagnosis: 61
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But I, I just thought that the harder I worked, the harder I would get back to work because I'd never, I'd never had a day's, I had been off sick you know, not frequently but occasionally with flu or something but I'd never had a day's unemployment. I had been employed from the age of fifteen to fifty-four and never had been out of work. Never had a, one day unemployed which I was very proud of and, and I wanted to get back to work as soon as possible. We'd always been independent and it took a long time to come to terms with the idea that you, that you'd gone from being the strongest man on the squad to the weakest, and that's very humiliating.

How do you come to terms with something like that? I'm sure that's something that a lot of people have to struggle with.

Well I suppose it, it you have to adjust whether, whether you have difficulty adjusting, or it's easy to adjust, some people are different. I found it very difficult because I'd always been very fit and very strong and without pinning medals on myself with the, with a dirty job to do, I took hold of it first. I think that if you want to lead people as I had done, you had to lead from the front rather than push someone else into the dirty end and then to suddenly find that people were having to do things for you is, is very hard to, to come to terms with. But you have to or you'll drive yourself silly. When my garden's untidy for instance I can walk past and avert my eyes. I know I cannot do it and I have a, obviously a gardener who comes and does it and, and does very well, but when you want to do a thing yourself and you cannot, that is very hard to, to live with. Especially when you've been used with having strength to spare, but you have to come to terms with it, the other way lies madness. And you can make your life and everybody else's life a misery if you have a mind and you just have to grin and bear it you know? Or try, we have our down days but for the most part we, we just carry on as well as we can. I want to be independent, my family have their lives to lead but as I say without my sister-in-law and my brother-in-law, I'd be stuck.

 

He enjoyed working in construction, but he had to give up because he just couldn't do it...

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Age at interview: 24
Sex: Male
Age at diagnosis: 23
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No you were just telling me that you used to do a job that used to take you round the country.

Yeah, and I liked that yeah.

So when did you stop working?

What from there? When I thought they weren't paying me enough money. So then I left there and then done labouring. I found that even better, but I weren't travelling the country, like, with that. So I had to leave that because I couldn't physically do it. That's when I knew, like, when this was kicking in, like, you know? I couldn't physically do it.

How were they when you, how were your employers at the time when you were starting to find it difficult?

Well, one of them I felt like hitting him because he kept taking the mick, like, you know that, I just left in the end anyway. He weren't, he weren't all there anyway so.

Right, okay.

Sorry, I just don't like chatting about it, that's all.

Did anyone, did anyone talk to you about trying to continue working, helping you to find a way to continue working?

Not what, what I was doing, no, because I, if I can't use my hands what am I meant - I can't even write. What am I meant to do like if I can't hold a pen? I ain't going to be able to hold a screwdriver or a drill. So all them things like, you don't, you takes it for granted but once it's gone, it's gone. Well, I did, anyway. I didn't ever know I was going to get this.

 
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His business installing industrial laundry machinery is physically too hard for him now. He is...

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Age at interview: 55
Sex: Male
Age at diagnosis: 55
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How it's affecting my working life? A lot. I've been positioning, installing the laundry machinery. It's not a launderette. The weight of the good washing machine is for example 6 tons. We move them, we install them, we do the pipework, the cabling. You know, water connection to each washing machine can be 4 inch pipes. You know, sometimes it was a hard job. So I cannot do this work myself.

Because it was quite physical?

Physical, yes, some of it was physical.

And is that your own business that you've built up?

Yes, yes.

And that must be very frustrating.

Yes, yes, it's frustrating. People are calling me. They want me to do the job. You know, I've been working everywhere in this country, prisons, hospitals, and you know, everywhere all round the country, for the army base as well, in Portsmouth, everywhere.

Do you miss the work?

Yes, yeah. I've been out most of my time. Most of my time I've been out. Now I'm sitting here.

What do you do during the day to keep yourself going?

Nothing. Nothing [laughs]. No, no, I'm doing Internet. I'm reading everything what is possible or impossible, mainly the Internet.

So you're spending a lot of time looking for information about the condition?

Yes, yes, mainly about this condition, yes, my condition.

 
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Leaving her job as a classroom assistant left a massive gap in her life, though she's still very...

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Age at interview: 45
Sex: Female
Age at diagnosis: 37
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When did you stop [work] altogether?

I stopped altogether in 2003.

Was that a hard decision?

It was a huge decision. Because it's okay leaving work to go to another job, but leaving work when you're 41, 42 and that's it, and having to live on benefits, it's just not nice. It's kind of the end of an era. It's - and I did take about three months making my mind up, was I going to leave permanently or was I going to keep going? And when I went and spoke to the head, she like offered us, 'Would a wheelchair around school help?' And, but I didn't want that, because that would've meant somebody having to bring it in for me at the beginning. And I also knew that walking around school with a stick was becoming more dangerous for me with children. The slightest knock and I would be off balance. And I also found that, as my voice got quieter, that I was having to repeat myself more in the classroom. And it was all right with the one-to-one, but if I had a group of children it was quite hard. And that was hard for the children, I think, to deal with. So I decided that the best thing all round was to make a clean break. Because even if I'd gone back in a wheelchair, it would only have been a short-term solution, and I would have had to make the decision if and when to leave all over again. So I decided to go. But I still go down and see everybody and I keep in touch, but it's a massive gap. But now sometimes - not so much in the winter, but in the summer - I now think, 'Well, how on earth did I find the time to go to work?' Especially now that I've got more care in. And my days are, are fuller. And if I'm out visiting, I try and get out in the car. So really now it's better that I'm not there. But at the time it was, 'What on earth am I going to do with my days? Am I going to end up sitting staring at my four walls?'

One woman originally thought she wanted to resign but found going back part-time really helpful both intellectually and socially. 

 

She thought she wanted to stop work, but she was glad her boss persuaded her to keep doing...

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Age at interview: 34
Sex: Female
Age at diagnosis: 31
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I worked for probably really two years. The first few months after I was diagnosed, I was still working full time. And then after about two or three months after the diagnosis I talked to my boss and went down to four days a week. And that was really just so that, I thought, 'Why am I working full time? [laughs] You know, I need to be, I need more sunshine hours, I need, you know, more time. I just want to potter.' And that was great. But I did really enjoy the contact at work. I enjoyed the normality as well, and the social side of things, and the intellectual stimulation. But I, I think when I, later that year, about six months or even a year later, I decided that it was time, I think it was with, family were coming out, friends were coming out, I was wanting to take time off and I thought, 'Why am I, why am I even working?' 

So I gave up work. But fortunately my boss at the time was really, really supportive and said, 'Right, well, yes, I'll let, I'll let you resign. But I'm going to keep you on as a consultant, so that you can still do the odd projects and do whatever hours you like.' So I was really, really fortunate. And at the time I said, 'Well, that's fine, but I don't want to do any more work.' But three months later I was glad of it. And it was lovely. I used to come in and do a day in the office and maybe half a day at home. And it was great to just keep my hand in and have that social contact, feel needed and feel a sense of worth, and, but not be dominated by the politics of work and not be bogged down. And, yeah, I, I really do appreciate his wisdom, really, in sort of saying, 'No, you hang on there.' And, and that was great. That was a real, that was quite a huge support for me actually. Yeah, it was lovely.

Yeah, well, I mean - well, another thing that my husband and I found was that for the last year we were, we were in New Zealand, as I say I was much more wheelchair-bound, and I really needed my husband's help, or someone with me, most of the time, or at least I couldn't be left for more than two or three hours. And, and my husband's employers were phenomenal and gave him an awful lot of time off, so that he was either working from home or he just was at home. And, and so we were together for a year, sort of at home together. And that was fantastic, because we could also go to the beach or, you know, do really nice things. But as my mobility decreased and also we lost the sense of a normal life, actually spending a lot of time together became detrimental. And it was actually, we were just getting at each other all the time, and we really missed the sense of normality. I think my husband missed a sense of motivation and worth, because although he was caring for me there wasn't, he didn't feel like he was achieving anything. And so that was one, also one of the reasons for coming back was that we, we wanted him to go back to work and work fundamentally on a sort of full-time basis, and, and then have people caring for me that were paid or, or relatives that could just do what was manageable.

And so that he could come home at the end of the day, tell me about his day and I could tell him about my day, and, and re-establish that normal relationship. And that, that has been great. That's been really, really good, to get that normality back. And so that he's got a focus as well that doesn't - and I'm not the focus of everything, although I like it to be sometimes [laughs]. Most, you know, fundamentally I don't want to be the, the thing that everything revolves around and everybody always making a fuss over me and 'What about this and that?' I just want it to be normal. And that's, that's really helped. And, which is quite counter-intuitive, really. Mm.

Carers' work and career

As Liz (above) suggests, having a partner or other close family member living with MND also has an effect on carers' working lives. As their relative becomes physically more dependent, carers who have not already retired may be faced with difficult decisions about whether to continue working, and how to balance their own needs with the demands of being a carer. Several people living with MND thought it was important for their partner to keep working. One commented, “He's still working, and I'm encouraging him, because I think that's important that he goes out every day, and he's no hobbies. He loves his work, so I think that's what he should carry on doing.” The wife of one man with MND said, “He wanted to get on with it his way. He didn't want me fussing about him. And to be quite honest I needed that escape as well.” Another woman regretted that she had given up work quite so quickly, as they have since found out her husband has a very slowly progressing form of MND.

However, combining work and caring could be tiring and stressful. Sometimes carers were worried about leaving their relative alone at home while they were out. As their relative's care needs increased, some people faced the dilemma of whether they would have to stop working, and whether they could manage financially. (The impact on carers' lives more generally is explored in 'Impact on family carers').

 
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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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Age at interview: 45
Sex: Male
Age at diagnosis: 43
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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.

 

They get up early so she can help her partner get ready for work before she goes to work herself....

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Age at interview: 52
Sex: Female
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Right, well, I mean, we start off with, we wake up quite early about sort of half 5, quarter to 6 because Marcelin needs quite a bit of like help with personal care' showering, shaving and that sort of thing. So we, we get up as I say about half past 5, quarter to 6. I usually, we've got into quite a routine now with the things so that I can shower first and then he, and then I can shave him and then he can shower. So it's quite an early start because, I mean, I, he leaves, his taxi picks him up about half past 7. And so and then I go to work soon after and start work between sort of 8 and half past. And but it seems, it's not hard work but by the time I get to work I feel you know like [laugh] I've been awake for quite a time really and have done quite a good day's work. Not a good day's work but you know, quite a bit of work already [laugh]. So people often, like people at work are not sort of aware of what I, you know, how much I sort of do. So they often say, 'Oh you know you've had a lie in'. And like I have to say, 'Well not, you know, sort of, sort of thing, you know'. Just brush it off really but. So of course we're both working full time.

So it seems like yeah it's not hard work but it's just because you, you've had to get up sort of fairly early for both of us. You know, it's, it's a, quite a long day. I mean during the day of course we're both working and then usually get home about half 5, 6 o'clock. Marcelin - and then I'll sort of start doing some tea or something. And Marcelin usually comes in perhaps a bit later if he's been to, to university and we have a, we always have a meal together and then it depends on how tired Marcelin's feeling. I mean sometimes he'll go to bed fairly early. Other times he'll stay up a little longer but It's, he does try sometimes to do the washing up for me because he can do that, sit by the sink. And that helps you know and it's a, because, [pardon me] because I'm not always used to, because I'm not used to him doing anything. So when he can do something it's really quite nice because otherwise it, it's I find it. You need to sort of be quite organised, you know. Otherwise things get left, you know, and then you're having to constantly catch up like you know if I've left the washing up in the, from one night and then you know sometimes it's still there the next night if I haven't had a chance to do it.

And it's not that there is a lot of work to do but sometimes, you know, if I need to help Marcelin you know just finding, sometimes he's trying to find some of his work somewhere and you know even that it, it's sort of takes you away from other things, doing other things. So I mean it's not a problem but it just means that of course you're not able to prepare then for the next day. So, I do find it sort of quite good if I can keep organised and on top of things and that way it doesn't become a problem then.

 
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His employers encouraged him to work at home whenever he wanted, to be with his wife. They...

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Age at interview: 55
Sex: Male
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So a whole series of domestic chores started to build up you know. We decided right from - well, it wasn't even a decision that she was going to stay at home. I mean that was mutually agreed. It was hardly even discussed, you know. I mean, there was no way I would want her to be institutionalised if I could possibly help it. So I went to my place of work and they were remarkably helpful. They were extremely helpful. And they gave me a laptop and said, 'Well, just work at home. Just do what you can at home and, you know, look after your wife', which was great. So that's what we began doing.

And people at work were very supportive. I just can't tell you how good they were. My colleagues - no, my managers as well as my colleagues - they just made space for me. They just made the space that I needed and they just left me to it. And they did have a work counsellor but I had all I needed from the counsellor we were seeing in the hospice, so I never used her.

 
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He's been running his wife's business but now she needs more care he has to decide if he can keep...

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Age at interview: 73
Sex: Male
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I've had to discuss with her that, because of the falling down and the situation which it's difficult for her to get herself up, that we have to be very careful on where she goes and what she does. And this in turn affects me dramatically because I am still working in what is my wife's business, which is a reclamation business. It's our main income, and obviously we need this income as much as we need to maintain the business. And so I have to leave my wife. And this is now becoming a very serious problem because my wife is obviously entering the stage where it seems that she will have to soon have someone call or with her at all times. And I have to make the decision whether it's to be me or someone else.

Do we sell the business off? I don't want to sell it off. I mean, from my point of view my life has been active, extremely active. I've been self-employed and I've been active in the construction trade' Hence my wife's reclamation yard, which she's built up off the offshoots and the benefits of the trade that I was in. I've had to hand it all over to my son, and he's dealing with that aspect. But my particular concern is obviously looking after my wife's business at the moment. And what I do for the future and how I get round this in relation to my wife's problem, I just do not know. It is one hell of a big problem for me personally at the moment.

I've always been very active business-wise. 'I thrive on getting myself into trouble and the excitement of getting out of it, being quite frank. And I've always been that way.

The MND Association provides a range of information sheets on benefits, entitlements and working with MND. They also have a Benefits Advice Service for people with or affected by MND.

Last reviewed August 2017.
Last updated August 2017.

 

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