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Motor Neurone Disease (MND)

Immediate reactions to diagnosis

Getting a diagnosis of MND was a terrible shock for almost all the people we talked to. This might be mixed up with all kinds of other emotions, including anger, grief, disbelief or denial. However, a few talked about 'taking it in their stride', particularly if they had already suspected it might be MND, and some felt able to focus quickly on 'making the most of the time that I had left'. Over time, most people came to the view that developing a positive attitude was the best way forward, though some took longer or found it harder than others to reach that point, and some were still struggling. (See 'Philosophy, attitude to life and messages for others' for more about how people's thinking developed). Here we focus on people's first thoughts after diagnosis. 

Several people's first reaction was despair, and a period of depression. Some talked of being 'flattened' or 'in pieces', and feeling the future looked 'dark' or 'bleak', before reaching a calmer or more positive state. 

 

He knew it would be bad news when they asked his wife to be present. He felt his world had...

He knew it would be bad news when they asked his wife to be present. He felt his world had...

Age at interview: 40
Sex: Male
Age at diagnosis: 39
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It was quite devastating, to be honest. I guess I knew before they told me, in so much as they came round to do their rounds in the morning - and they were lovely [laughs], don't get me wrong, they were very nice and I have no complaints about how or what they did. But knowing what they had to tell me, they said they had the results back and wondered what time my wife would be able to come down. I said, 'It's obviously bad, then, because you, you know, you feel I need someone to lean on to be able to give me that.' And unfortunately for them I'm a sales person, have been for many years, and consider myself quite good at what I do. And I'm pretty good at spotting a fib when I see one [laughs]. 'No, no, it's okay, we just, we really don't want to have to explain everything twice.' The bullshit alarms were going off and I just, I knew. Anyway I phoned Sam. Bless her, what she must have gone through I don't know. I was in a state of near hysteria. She drove up - dropped everything, drove up. Then they called us in and told us [sighs]. As he put it, it was the worst possible diagnosis as a neurosurgeon.

So then, hmm, the specialist and the nurses and - and as I say they were great - the news they delivered was, mm, crushing, devastating. I felt my whole world collapse'in an instant really, wasn't it? [turns towards wife] It just couldn't have been real, couldn't be real. To be told, 'There is no cure. There's nothing that we can do for you. There are, there are some relatively new tablets which we can prescribe for you. They won't cure it. They may slow down its progress.' The - how was it put? The jury was still out on it, really. They wouldn't know how long people who were already taking that drug would have taken to degenerate, had they not have been on it. That was [pause] very hard to come to terms with. 'There is nothing, there is no cure.' It almost feels like, initially the very first thing that's ripped away from you is hope. That's pretty hard. So for anybody with a condition like this, that is one of the hardest things to come to terms with.

 

When he finally got a diagnosis after 7 years, he felt hopeless and that there was no point going...

When he finally got a diagnosis after 7 years, he felt hopeless and that there was no point going...

Age at interview: 55
Sex: Male
Age at diagnosis: 51
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Until that point I was still having the hope that there was a possibility to come back, or to, to train my muscles back. And I'd done a lot of things with my GP, who was always not keen on discouraging me, but slowly let me realise myself. But I was still believing that it was possible for me - and as I say I was a judoka sportiest - I was still thinking that it was possible for me to fight back and come back and, and make a good physiotherapy and do something. But I was realising that every effort I was doing was getting me more tired. So it was difficult. And when I got this diagnosis, I would say, should say that I had tears in my, in my, my eyes. And when I came out of the hospital it took me a while to get into the taxi, while I was waiting for the taxi to come and pick me up. Because I was realising at that time that I was definitely a disabled person and I was changing life. And it was not the fact of dying of this condition, just the fact that I was thinking that I had no way to fight back. And it was clear there was no cure yet and the, that the, and the degradation would continue. So I was trying to find a way and I, at that time I was completely distressed. I've lost completely any, any hope. And honestly at that time I would say I've thought any kind of situation could be ending my life, and going in the mountains while I could still do something and die from hypothermia somewhere there, just to disappear. Because you reach the point at this time when you know that you cannot fight the condition. You think that there is no, no hope. And so that was the status in which I was at that time.

That's, that's interesting, because some people who've had that very long route to diagnosis have said to me there was an element of relief. But it sounds like not in your case.

No, because at that time the first reaction was that one, honestly. I said, 'Okay, well, there is no hope then.' And because my, my family, my private life was going badly because of the condition as well - because this condition is a wedding killer. So you cannot blame anybody to, not to be able to cope with it. It's just as people are. And so these two things accumulated just lead me to the point of saying, 'Well, okay, I'm abandoned and I'm here. And then what will I do now? I'm useless.' So that was more or less what the, the diagnosis meant to me. Even though the, the doctor kept me for an hour and a half, we talked about it, I was very courageous when she said about the thing. I was putting questions, I was very cold. But the, the heat came after, when I was alone. And, and this is something which has to be clear.

Such conditions, whatever they could be, MND or any others which are terminal, the stronger you could be or are, at the point of time, it will hit you, because you realise. And then the point is, from that point it was, it was a long journey for me to get perspectives, get new ways of condition, accepting my situation and finding ways, which have taken some while. Yeah.

One man described how despairing he felt between getting the diagnosis and seeing a specialist. He stressed how important it is for people to have another appointment soon after the diagnosis to ask questions. At first he was too shocked to think what to ask.

 

There was a delay between the diagnosis and seeing an MND specialist. All he could think about...

There was a delay between the diagnosis and seeing an MND specialist. All he could think about...

Age at interview: 60
Sex: Male
Age at diagnosis: 59
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Obviously we were concerned at that point that it was something more serious than we originally thought about. And we'd looked on the Internet independently, putting the symptoms in, and coming up with completely the wrong answers, and probably frightening ourselves more than anything else. But all independently, because we, we couldn't even talk about it, my partner and I, in terms of what it might be. The specialist, as I said, dealt with it extremely well. We were his last appointment of the day, so we could spend as much time as we wanted with him, which was really nice because there was no pressure on either side, for us to go or for him to need us to go for the next patient. And he explained that we were his last appointment, 'So just take your time' and what have you. But of course you can't think of anything. Somebody's just told you that you have a terminal illness. What do you think about? All that you see is the terminal illness. You don't see anything else. So you're trying to come to terms with it, and you can't think of what to ask or what questions you want answered. What I was told was that there was a specialist at the hospital in that department that dealt specifically with motor neurone, and he would transfer me to that specialist, because he was the best guy in the field in terms of it. And he is. And he's extremely good.

The problem was, whether I fell through the, the paperwork or not, I don't know, but I was expecting to be seen by him within a fortnight of that meeting. After two months I still hadn't heard anything. And after two months of being told you're terminally ill and nobody speaking to you, we just didn't know what to do. We'd gone through crying, through, not, I couldn't cope with anything that was more than a fortnight away. Nobody could sort of plan that in three weeks' time we'd go down to [daughter's] or up to [other daughter's] or whatever it might be. It was, 'Don't want to know. I'm not going to be here in three weeks. I'm terminally ill. Can't you understand that?' you know. And you become very whatsit. And literally I was in panic mode, because I had nobody I could contact, nobody I could talk to, I didn't know what the hell was going on. I went on the Internet and found the Motor Neurone Disease Association, rang their helpline, and within 24 hours I'd seen a specialist, I'd seen my motor neurone disease nurse in my local hospital, and all was well.

When we sat down and went through after he examined me, the whole of the interview was taped, so that I could take it away with me to refer to. Any questions we had were answered honestly. We were able then to start coming to terms with it a lot better. And I felt I had something of a future. Because one of the questions I asked, obviously, like all people who've been told they've got a terminal illness, is, 'How long have I got?' And of course nobody will tell you because they're not sure how long you've got because they're all different. But he did tell me I could book a holiday this year. So that was sort of positive, and that was a very good thing. So we came away from that with a) the knowledge that I wasn't the only one in the world, that there was an organisation that I could turn to that could help me, that the professionals in my area were extremely good in what they did. And this feeling of the end of the world having descended upon us didn't go away - I mean it was still there - but we were able to cope with it so much better in terms of it.

Several people said they felt almost numb when they were given a diagnosis. Some just could not take in what they had been told, or did not really want to. A few even went straight back to work or went shopping after the appointment.

 

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

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

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

Some people found avoiding thinking about it too much helped them cope - as one man said, “I'm a person that's a bit like an ostrich, I bury my head in the sand.” Some could not believe the diagnosis was correct - one man said his young daughter would say, “I'm going to keep fighting this. I haven't got it. We'll find out what it is and then I'll get better.”    

 

 

She thinks her father was in denial about the diagnosis until he lost his speech. He said they...

She thinks her father was in denial about the diagnosis until he lost his speech. He said they...

Age at interview: 49
Sex: Female
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And what was his reaction?

'You're wrong.' [chuckles] She had to tell him that he was definitely going to die and he said 'It, it can't be. There must be something you can do.' And she said 'No, there is absolutely nothing,' they could do and he said 'But there must be.' 

He, he was an inventor and mechanical engineer and he, he could think about all sorts of things he could do to build you know artificial legs that were driven by electronics and do the walking for him. And I don't think he had really taken on board [coughs] what it would mean for the rest of his body as the disease progressed and of course nobody really knows about motor neurone disease until they get it [coughs].

Have, how long did this sort of denial go on for and how did his emotions change?

I think he, he was what I might term in severe denial probably for about two or three weeks where we, it was very difficult to talk about anything because he wasn't having it that he was likely to stay in. So we were having to deal with his long term care whilst at the same time he wasn't, he couldn't see that there was any point in organising that because he wasn't going to stay in hospital or in a nursing home or any of those things, he was going to go home.

But he was already too disabled for it to be possible to look after him at home. And so, so it was very, very difficult to have a dialogue about those things and he was still very much a man over whom you could not talk or about him, you could not talk without involving him and at the same time it was very difficult because he wasn't facing up to what was going on.

And I don't think he did, I don't think he really, really took it on board until he couldn't talk any more. And I think there was, there was an awful realisation that that really was it, and that was probably about two weeks before he died. So we had a period of four months.
 

 

He does not want to read about life expectancy. He deals with MND by making believe it's not...

He does not want to read about life expectancy. He deals with MND by making believe it's not...

Age at interview: 73
Sex: Male
Age at diagnosis: 68
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Oh, the views, the views that you get are horrific. All of the, the, the picture you get of it is terrible really, some of the stuff they write down. I mean nobody lasts any - well, according to some of the, some of the stuff that you read, I don't know where it comes from, but I mean, you know, everybody says, 'Well, you only last eighteen months anyway. You know, you don't, you don't last very long with this sort of thing.' So I thought, 'Well, that's a bit of a blow, that is [laughs]. I'll have to see what I can do about this, you know. This isn't, this isn't my way of thinking. Got to get round this somehow.' And, and that's how I've, I've got my thoughts about this right the way through, that, you know, there is, it's a, it's, well, I put it down like it's a natural something that goes wrong with you, you know. And if it goes wrong with you, you've got to get over it. And you give it a try. And you try all the things that you read in the, the magazines that they send you, and all this sort of thing. Always sending you, I get a monthly magazine and, you know, people write in it, and listen to them and talk about it. But as I say, that we've just coped with it like that. That's the only way I've, that I can cope with it.

It's just sort of not'

It's just, it's just not there. No.

'happening.

It's just not there. You know, I mean, I can get over it by thinking, by making it, making believe that it isn't there, I suppose. It's a - you see, I've got a world of make-believe, and that's, that's how I live, my world of make-believe. It's just not there.

A few people who had waited a long time for a diagnosis felt a certain relief at finally getting an answer. One man whose wife had MND said it was, “A tremendous shock on that particular day, but obviously I suppose you can call it pleased that we had got a definite diagnosis.” Another man said knowing what he was facing helped him fight it.

 

He was so relieved at finally getting a diagnosis that he laughed. He was told he would not live...

He was so relieved at finally getting a diagnosis that he laughed. He was told he would not live...

Age at interview: 62
Sex: Male
Age at diagnosis: 53
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The neurologist I was under, we went back to his clinic and from everything being rosy. I'll never forget his words, he said, 'I don't know what's wrong with you and I don't want to see you again.' Ordered me to get dressed and to leave his consulting rooms and that was the biggest shock of all. He was rude and impolite, is not a strong enough way of putting it. So we asked our GP if I could go somewhere else for a second opinion. And I ended up traveling up to London for the best part of two years. I was going up every six weeks and I had a five day stay for tests to be carried out in the November of 1996. And I had another five day stay in the September of 1997 and that stay started on the Monday after Princess Diana was killed in Paris on the Saturday. I came home, I wasn't told about the results.

About ten days later we went and saw our own GP and he told me I had motor neurone disease. The relief at that time, because this had been going on from 1989, since I fell off the ladder. The relief of knowing what I had to face was so great I burst out laughing. I didn't think then how I was going to tell my mother, or other members of the family. Well a couple of weeks later in the October, I had to go back to London and be told officially. Our own GP had said I could look forward to maybe five or seven years maximum. I said that to the neurologist and he said, 'I wish I could guarantee you six months but I can't guarantee you three.' So it was a case of proving somebody wrong. 

My immediate thoughts then were of Professor Stephen Hawking. I knew about motor neurone disease before I was diagnosed. I knew the implications and I knew about the progress of Stephen Hawking and my immediate thought was he lived with it or motor neurone has lived with him, because he's put his training to good use and he's still alive today. I haven't got his brain power but I can put my brain to work on other things. They don't have to be hard in the sense of learning new technologies or anything like that. I learnt the Net. I wrote my life story for my grandchildren because I didn't think I'd be alive today.

A few people had already suspected it was MND, sometimes because they had been doing a lot of reading and researching their symptoms on the internet, and sometimes because they had professional knowledge of neurological conditions. For some people this meant they were quite calm about the diagnosis.

 

He was pretty sure what the diagnosis would be, so it didn't come as a 'nasty surprise' and he...

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He was pretty sure what the diagnosis would be, so it didn't come as a 'nasty surprise' and he...

Age at interview: 58
Sex: Male
Age at diagnosis: 56
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Well, I was aware, I mean I did a lot of research on the Internet. Having university affiliation meant that I could dig a little deeper than most people, because I had access to specialist journals and so on. So by the time that, in fact quite some time before we confirmed the diagnosis, I was pretty sure what it was. So it didn't come as any great surprise to me. You know, one just takes these things in one's stride and sees what happens, really.

Is that how you felt when they confirmed that's what it was?

Yes, I wasn't surprised. It didn't come as a nasty surprise, because I guessed there was a very good chance that's what it was.

 

They knew it might be MND before it was confirmed, so they had time to plan how to deal with it....

They knew it might be MND before it was confirmed, so they had time to plan how to deal with it....

Age at interview: 55
Sex: Male
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It took quite awhile to get an actual diagnosis done. We, we went to see the specialist at the hospital. I think in late September. It was a very quick appointment. And then we couldn't get any tests done until the following March. Apparently there's only one person in this area who does the tests. And she herself was ill. That, that was our understanding. So it was, wasn't until March until we got the tests done. So Di had to wait until that time although ' although we were just holding a little area of hope in the back of our minds we, from everything we'd read and understood we were fairly convinced ourselves that it was motor neurone disease. And in fact we the, the specialist that we went to see had sort of confirmed that. He hadn't said straight out but obviously he wanted to get the tests first before he committed himself. But you know he did say to us, 'And I think you should be thinking about, strongly about the possibly of MND'. That was as much as he was prepared to say. So really we were fairly sure at that time.

It was a really strange sort of six months, you know, because, you know, we were convinced and at the same time we were hoping, you know, and, and it was, we were planning what, what on earth were we going to do and how long might it take you know and the' what we'd read suggesting anything between eighteen months and ten years possibly. So what was going to happen, how would we deal with it.

And I got in touch with a physician who I knew that I used I to work with because I used to work in a complementary health clinic, who specialised in life threatening diseases. And he came back to us and made some suggestions.

But I think it was very clear ' both to Di and to myself that we didn't really want to go down that route. We didn't really want to anxiously fight the whole thing you know. You know, MND the, the outcome was pretty certain whatever you did. And, I mean, I guess we both held out for the possibility of some unusual cure or, or prolongation of the disease. But we both realised that, you know, that it was terminal.

And I began to ' I always knew my wife was quite exceptional in some ways and in an extraordinarily practical view of life but I didn't realise quite how extraordinary until this actually occurred. And, and she said, 'Okay well let's just work out the best way for me to die'.

Others said that even though they had guessed it might be MND, hearing it was still a shock, especially those with a family history of MND who had close personal experience of the condition and what it would mean for them (see Interview 22 - Liz's story, Interview 34 - Ken's story and Interview 39 - Liz's story). On the other hand, one woman with a family history explained her pragmatic attitude to the diagnosis she didn't want to hear' “I knew that the sooner I was diagnosed, then I could start making the most of the time that I had left, rather than wasting it pretending it isn't going to happen.” (See 'Possible causes of MND' for more information about the inherited or familial form of MND).

An occupational therapist who had worked with people affected by MND in the past described her reactions to her own diagnosis. 

 

She suspected it was MND and wanted the doctor to tell her straight. For a few days she couldn't...

She suspected it was MND and wanted the doctor to tell her straight. For a few days she couldn't...

Age at interview: 39
Sex: Female
Age at diagnosis: 38
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The way the doctor told you the diagnosis, there is never an easy way to tell anyone that.

No.

The way that he told you or she told you was that the best way they could have told you?

It was appropriate. I think he was a very good doctor because I think he reads into you and he, because he sees you for the two weeks you're in hospital. I think he can pick up on how he thinks is the best way to word it to you. And I saw a lady who was on the ward with me and she's been to her, tested for MS and I could see that over the days they'd already diagnosed MS but they were just drip-feeding the idea to her every day. So I did actually say to my consultant that, you know, 'I know, I think I've got MND. Please don't drip-feed it to me. Just tell me straight.' And that's what he did, very gently but he was no, none of the drip-feeding that I saw the other lady having done. He just came in and said, 'You, you're right unfortunately', you know, 'It's MND and I really wish it wasn't'. And, but he didn't, he did it very gently.

He was very good but he made me laugh because he said, 'Thank you for making it so easy for me' [laugh]. You know because he asked me what I knew about motor neurone disease and obviously I knew a lot. And he, 'Do you know what the diagnosis is?' And so basically he didn't have to correct me. I already knew. So I suppose in that respect it made his job easier for him, because a lot of people have never heard of motor neurone disease when they're diagnosed. So when they're told that it's incurable and that your life span is quite short it. It, it's a shock anyway but I can imagine it's an even bigger one when you don't [laugh] know about the condition.

Was there any information you did want at that time based on what you already knew?

No. No. I tend to have the keep my head in the sand theory. I know what, what's happening. I know roughly what my life span is. I've got obviously a good idea of the process and how my life is going to end, so I don't need to know any more than that. I'll just accept things as they come and work through the problems as they arrive.

I know you did ask me about when the doctor first gave me my diagnosis and how I felt. It was a big shock, big shock for everyone. My, my sisters wouldn't believe me when I said that I'd MND until it was diagnosed. And they never for a minute believed it would be MND. So it was quite a shock for all of us. I slept okay because I didn't think for the first couple of days after diagnosis I'd be able to sleep. But the one thing I couldn't be, bear to be on my own, even if other people were in the house, I couldn't be in a room on my own. And my poor husband, I followed him round like a little sheep everywhere. [laugh]. He wasn't allowed to leave me on my own in a room. I had to be with him all the time.

While this woman did not want to be alone, others withdrew into themselves and did not want to be with others or talk. One man moved into the spare bedroom for 6 months. Some people felt angry and asked 'why me?” One woman was surprised that she had not really felt angry, although she did feel disappointed and frustrated. Others said it was like going through the different stages of grief, grieving for the loss of their health and independence, and the loss of future hopes and plans.

 

It was like going through a grieving process after diagnosis, especially when she thought about...

It was like going through a grieving process after diagnosis, especially when she thought about...

Age at interview: 39
Sex: Female
Age at diagnosis: 38
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Yeah so you, you, you grow to accept your diagnosis and as, as everyone will, as everyone says, your GP will tell you, you'll go through a grieving process. But my GP was talking about the grieving process and she made me laugh because she said about these stages that you go through. But what she didn't say is everyone goes through these stages at different lengths of time and also they don't go in a particular order. They can be all higgledy piggledy mixed up. But you, it, it's a grieving, grieving stage you go through. I went through the stage of crying and getting upset knowing that I'll never see my children into adulthood. I'll never see my grandchildren, which upsets me' but you live, you live through it you do. It upsets you talking about it but you'll learn your coping mechanisms.

Some people were also immediately worried about becoming a burden on others, especially close family. (See 'Impact on family carers').

 

He says he has never felt worried or upset by the diagnosis. What saddens him is feeling that he...

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He says he has never felt worried or upset by the diagnosis. What saddens him is feeling that he...

Age at interview: 80
Sex: Male
Age at diagnosis: 80
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I live with the day, every day the same way. I'm not worried about it. That has to look after me. I have to look after it. It's there anyhow. So this is the way I spend my time. I'm not worried about what will happen next, how far it will go, how far it will not go. It can get out as well, by itself. Who knows? And this is the way I live every day.

Was there ever a time, perhaps straight after diagnosis, when you felt more depressed about it'

Not at all.

'or shocked?

Not at all. The only depression for me is I'm dependent on other people. Now, my wife is next to me. I have to ask her because I'm helpless. I have to ask her for every little thing. And that depresses, that gives me a pain, in the sense that I'm taking her time, which she could be spending her time with some, something else, in her own pursuit. And same thing when other people have to ask, they do something for me, being because they find that they should help me, they feel. And so, but I'm the one culprit in the sense that I'm taking their time. That's the only thing which hurts me. Otherwise, fine, because whatever will be, will be. But involving other people as carers, as that's the great word 'carers', I'm afraid they are carers. My wife is a carer. She has no idea at all how to, how to deal with my problems. Now with the frustration, it does happen. With the frustration sometimes I get angry. I mean, it's not a question of being angry, it's just sometimes you roll, sometimes life gets heightened up and you speak a bit loudly. And people think that I am angry about things, which is not really. Why should I be angry? But it's the frustration as such that the pain is here that I cannot do by my own spirit. And that is the worst thing which she, she has to tackle with. She has, the carer has to think, 'Oh, my God, he's angry', that she has done something wrong or something - how she should behave, how she should tackle the problem? And so I thought I'd better send my wife, because there are so many people in my condition. The carers and the people who are caring about, they must be feeling the same thing, they must be going through. How do they tackle this problem, behaviour of tackling, looking after the condition of the patient? So I was thinking that she should meet another carer who is in the same situation, how that person is tackling the problem, the behaviour of the patient as such. I haven't yet found to send her, and I would very much would like her to go and meet people.

Views were mixed on the best way to be told the diagnosis. Some wanted a straight, honest approach, while others found this too blunt. As several people pointed out, there is no easy way to break such bad news, but doctors need to be sensitive to each person's needs and state of mind. Some people said it is possible to be honest and gentle at the same time. In particular, people talked about whether or not it helped to be given detailed information at this point about how long they could expect to live with MND. (See also 'Information needs'). Several said they thought hearing the diagnosis could be worse for relatives than for the individual themselves. One woman said she was shocked but her husband just said 'hey' and shrugged, because he felt there was nothing he could do about it. (See Interview 23 - Mike's story).

 

The consultant neurologist told him to go home and put his affairs in order. It seemed blunt but...

The consultant neurologist told him to go home and put his affairs in order. It seemed blunt but...

Age at interview: 59
Sex: Male
Age at diagnosis: 55
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When, when the consultant neurologist told me of the, of his diagnosis, he said, 'There's no easy way to tell you. The best advice I can give you is to go home and put your affairs in order.' Now I thought about that and thought, you know, 'There must be a better way.' But personally I like the direct man-to-man touch. There was no beating about the bush. I knew exactly where I stood. And to a large extent with a service background that's what I've been used to. So it didn't bother me at all. I think, given the choice, I think I would prefer to be told directly what was, what was wrong. And I was quite happy with that.

Were you given any information at the time?

Not on the day. Shortly after diagnosis, a lady who's known as an MND clinical specialist contacted me and she informed me about the SMNDA, Scottish Motor Neurone Disease Association. And I got lots of information from them. I met various people who have either suffered directly or who have lost relatives with the problem. So in a short while we, my wife and I were, were able to become pretty knowledgeable about the problem and there was, we knew exactly where to go for advice.

I just want to ask you about your feelings when you were actually diagnosed.

Well, I was shocked. I, I didn't expect that at all. I'd led a pretty active life. I'd played sport all my life. I was a 6-handicap golfer at the time. And I knew all that was going to go. No, I was shocked. That's all I can say on that. I'd never heard of MND until that day.

 

She was prepared for the diagnosis and the professor was kind and reassuring. She told her every...

She was prepared for the diagnosis and the professor was kind and reassuring. She told her every...

Age at interview: 58
Sex: Female
Age at diagnosis: 55
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It was really the whole of 2003 when I was pretty sure something was wrong with me. In hindsight, looking back into 2002 there had been a few little times when I'd have a trip, or I hadn't been able to lift something up onto a British Rail carrier, you know, luggage carrier, I couldn't get a case up onto it. I thought my arms had got very weak. But at that time I didn't think it was anything serious, you know. But definitely through 2003 I was worried that things were going, and I had an idea of what it might be, because I'd read things. So, you know, when the diagnosis comes it isn't necessarily into complete ignorance. It wasn't that much of a shock because I had more or less sussed out what I thought it was and I was sort of prepared for it when it did come. So you know, I think my reaction wasn't as upset as they'd expected me to be, because I'd already faced up to it to a certain extent.

And so when, the way they told you the diagnosis, was that the best way they could have told you, for you?

I think so, yes. Because I had already talked to them about it and said, 'Look, you know, my view is that it's, from what I've read it sounds like this'. And so they, I think they knew I wasn't going to be terribly upset. And the professor is a very nice person, very, very friendly and doesn't talk down to you at all. She wasn't patronising in any way. And so she talked to me as if I was an intelligent person. And, yes, it was a good way to do it I think, yes. I think what they didn't do was to tell me everything about what was going to happen. Because they said to me, 'Every patient is different, and not all patients get all the symptoms. So if you read through the booklets and things, it will tell you all sorts of scary things. They may never happen. So don't worry about them'. So I accepted that as a way of living and decided I wouldn't worry about things until they came. So that's how I've been coping with it really.

 

There is no nice way to tell people they have MND - it will always be 'a hammer blow', however...

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There is no nice way to tell people they have MND - it will always be 'a hammer blow', however...

Age at interview: 40
Sex: Male
Age at diagnosis: 39
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What would you say to health professionals about how they ought to approach people with information?

[laughs] Advice on how you deliver things like that? Wow. Where would you begin with that? I appreciate it's a very sensitive area and I felt they approached my situation with sensitivity. I don't know where I would begin to advise on that. It's just, it's a hammer blow. However much velvet you wrap it in, there's a hammer behind it. I'm certainly not saying just, 'Out with it and, you know, whatever with the consequences.' I don't think there's ever going to be a nice way to tell somebody they have a condition like this.

 

Being present at her mother's diagnosis was devastating. For the next week she felt as if they...

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Being present at her mother's diagnosis was devastating. For the next week she felt as if they...

Age at interview: 40
Sex: Female
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Basically Mum was given a very direct diagnosis, and told that they thought that she had MND, which was her worst fear. It was what she was expecting to hear. It wasn't what I was expecting at all. And I was absolutely devastated. I think Mum was just completely fazed. I think she just took it on board. She asked very sensible questions. I felt she really wasn't being listened to, I felt that the consultant was very used to delivering these verdicts, and that's what it felt like, it felt like a death sentence.

So we got home and I phoned my sister's husband and told him, and they came up that afternoon. And they spent the week with us, and it was a week - it was a bit like being on a desert island, really. It was a week of just disbelief and tears and anger and just an extraordinary time, really, where none of us wanted to go out, or do anything, you know. It's really hard to see the day is dawning and to see life, actually, when suddenly you've been told that death is the prospect in front of you.

 

He was told he might live 3 years. His wife was across the room from him and was crying with...

He was told he might live 3 years. His wife was across the room from him and was crying with...

Age at interview: 45
Sex: Male
Age at diagnosis: 42
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So when we went to the hospital and we saw the neurologist and he read the EMG results and he also looked, examined me again and we were in, we were in a private room. There was another doctor there as well. There was me and my wife was there and I was just sort of sat down in one of, it was like a really big sort of chair that they must use for patients, like a big chunky, like a dentist's chair thing, and so my wife wasn't sat next to me. She was on the other side of the room in another of these like big chairs. It did feel quite strange. And then he was just sort of saying you've got motor neurone disease. He was saying, you know, 'In a year you probably won't be able to walk, you know. The average life expectancy is three years'. He was like saying all these things and my wife's like sort of crying and I'm sort of like asking like sensible sort of questions [laughs].

And it just, yeah that part of it didn't feel great. It would've better if we'd been together more, if they'd allowed us to sit together. But it was like the geography of the room that we were sitting us in really didn't allow it. Because it was, it was a room that was ' I think it was like part of a ward but there were no other patients there at that point. So that was that was difficult and then we just had it ' then they just leave you for a bit and then you just have to go home. And that's kind of, they just well there's nothing else that they can do. But it's just really strange you just have to go home and sort of you know. What they did say was that we could come back next week so you know so they gave you a chance to ask any questions. But obviously we were kind of in shock. But they said you can come back next week and they made an appointment for us. So that we could go back and then we could talk about it more once we'd had more time to think about everything and ask and things like that. So yeah I think overall it was okay. It would just been if it had been in a different room and if we'd been able to sit next to each other. 

Was it useful being able to have that space to think and then go back?

Oh yes, it was yeah. Yeah I think if we'd just been left and then that was it, they'd said because the normal appointment when, when you're first been diagnosed is well you'll, you'll go to clinic, the MND clinic. And that's sort of, at first that's every six months. So I mean to have just been left like for several months without anybody else to talk to about it would've been cruel. So yeah it was good to go back, yeah. 

What happened at that next appointment? 

Well at the next appointment then I saw the consultant who was the sort of regional expert on motor neurone disease. Because the other neurologist I'd seen was just a more general neurologist I think. And he examined me and he said, 'Well yeah you've got motor neurone disease.' So he confirmed the diagnosis. And what he said although I didn't really take this in at the time, at the time but my wife tells me that he said, 'But the kind that you've got or from the initial symptoms that we can see, it's not the most rapid kind of motor neurone disease.' But I hadn't heard that if he'd said that but my wife did say he said that right from the beginning and then at future times when we'd see him he sort of said that. And and you know what he said was he doesn't really know although he was saying it wasn't the most rapid, he wasn't making any kind of, he didn't make any kind of predictions about you know how slow it would be, or what would go wrong first or what we'd need to sort out first.

This man was in fact diagnosed with PMA (progressive muscular atrophy). Others who were told they had PMA or PLS (progressive lateral sclerosis) described some relief at this news, especially if they had previously been given a diagnosis of MND - as one couple said, “It's like a big reprieve.” (See footnote on less common types of MND). 

 

They went out to celebrate when she heard she had PMA.

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They went out to celebrate when she heard she had PMA.

Age at interview: 54
Sex: Female
Age at diagnosis: 52
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So I had to go through the whole of the summer knowing I had motor neurone disease and not knowing how bad it was. And we got this appointment to the specialist hospital, and I was in there for an hour and a half. I mean it's a fantastic unit. I'm so pleased that I've been referred there. And I was examined by a registrar for an hour, and then the professor came in. And he said to me, 'Well, I think you've got a condition that we would call flail leg or PMA.' And I said, 'Oh, what's that?' And he explained. And that night we went out and celebrated, which again is a most ridiculous thing to do [laughs]. 'Hey, I have got motor neurone disease. But it's PMA.'

 

Being told he had PLS gave him extra strength to fight it.

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Being told he had PLS gave him extra strength to fight it.

Age at interview: 60
Sex: Male
Age at diagnosis: 57
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How did it feel being told it was PLS?

Certainly there was a - I won't say relief - but it did give me extra strength to fight it, to live life as best as you can, as normally as you can. And I think normal is the word you've got to use in every day situations. Be as normal as possible.

However, some found it hard to adjust to a different diagnosis. The wife of a man who was told he did not have long to live explained how that affected their decision-making. When they discovered he had PLS and had much longer life expectancy they regretted their previous choices.

 

Everything turned on their belief that Barry did not have long to live, not knowing he had PLS....

Everything turned on their belief that Barry did not have long to live, not knowing he had PLS....

Age at interview: 54
Sex: Female
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But I think if we'd have known at the time that things were going to be different than they were, we'd have planned things a little bit differently. As it was we did put things in order and we did hope for the best. But I don't think we did everything right, because we didn't know he could possibly last this length of time.

Now we live quietly. He doesn't go out. He does not like people looking at him. He can't move very much. He finds eating very difficult. And he gets very, very tired. So he doesn't like people to see him at all. He hates people looking at him in a wheelchair. So he tends to stay at home. And I dive out and back home again as is necessary. I wish we had have known that this was possible, that he could last longer. We'd have made so many different kinds of plans. And maybe he wouldn't have been in the position he is in now of not wanting people to see him. Because he thought he was going to go downhill so quickly there was no point in making friends, because he wasn't going to be around.

And how does that affect you in terms of your daily life?

Well, my daily life runs totally around him. In a lot of ways I made my own bed and I'm having to sleep in it now. Because, that sounds a bit cruel in a way, but because we thought he was going to die and very quickly, I spent a long time thinking, 'Well, today's going to be the day. Or is it going to be tomorrow?' So everything today had to be for him in case he wasn't going to be there tomorrow. And when you do that for several years you suddenly realise that you've lost an awful lot of things. Not that I mind. I don't, because I'm very happy with my husband. But it shouldn't be the way it is, because of our lack of knowledge. And that's a shame. We don't socialise. I do. I have good friends who have taken me under their wing and said, 'Come on, at least once a week out for coffee. Once a month, girls' night out,' which is just literally going to the pub across the road. But that's fine. We, we have a good old chinwag. And that's my release, which is great. And I'm very, very grateful to them. But he never goes anywhere and I feel so sorry for him.

The one thing I've learnt to do, through a little bit of counseling I must admit, because I did get depressed at one point, was I've stopped feeling guilty about going out for those coffees. I used to even feel guilty if I went out for a walk, because he can no longer do it. But I feel wrong that I should go out and do it. But I won't say I'm totally over that, but I'm a lot better than I used to be. And I now don't think he's going to die every day, which is really, it sounds silly but it's a help because it was very depressing thinking that every day.

Most people had someone else with them when they heard the diagnosis, and were glad to have the support. Others went on their own, and one woman said she would have preferred to be alone as it was so unpleasant for her daughter.

 

She wishes her daughter had not been invited to come with her, as the diagnosis was a great shock...

She wishes her daughter had not been invited to come with her, as the diagnosis was a great shock...

Age at interview: 72
Sex: Female
Age at diagnosis: 72
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Yes. That first time, how do you feel about the way you were told?

Well, for me it was so impersonal. It felt as though it was a demonstration of the facts in order for the students. And it actually meant that I didn't feel emotional at all. 

Well, it felt very clean and antiseptic. 

Were you glad about that, or?

Well, it stopped me being emotional. But it was really bad for my daughter, who took it on full blast, you know, and she found that pretty grim. I was, obviously I just didn't want it to be that, I didn't want it to be that at all. And so we had a long session, which was exhausting, while it was all orderly spelt out, including, 'You may have a second opinion.' And so.

Which was what your daughters wanted?

Yes. We went next door and saw the nurse, then the coordinator. For me, that was exhausting because it seemed repetitive. I could do without that then. I already knew what she was telling me about because of my experience. And, then [daughter] had had enough.

But as far as professionals are concerned, again we are unique, and I think how much and what you give them is very much to be tailor-made to the individual, and of course their supporters, their family. Sometimes it's them you'll see rather than the patient, isn't it? It depends so much on what the set-up is and who you identify with, if you like, or they identify what their needs are.

Because you felt that, that the daughter who was with you at the diagnosis, probably her needs weren't very well met?

No. I thought, I wished she hadn't been there. To have invited her there I thought was rather outrageous. Her partner was very ill at the time. They didn't know that, but why should she be lumbered? They don't know. And I should have guessed and I shouldn't have shown her the letter. So that was a mistake I made.

Footnote: less common types of MND diagnosis

A few people diagnosed with MND will be told they have a less common form of the condition such as PLS (primary lateral sclerosis) or PMA (progressive muscular atrophy). PLS affects only the upper motor neurones, and PMA only the lower motor neurones. The first symptoms of these forms are very similar to other more common forms of the condition, so in the early stages it can be difficult to distinguish them. In PLS, legs, hands or speech can be affected as well as sense of steadiness in walking, and in PMA it is usually hands or legs. People with these forms generally live longer than people with more common forms of MND, but they share many of the same problems of increasing disability. For further information about the symptoms and progression of these forms, see our resources section for links. This page also explains how to join an email forum for people with these forms.

See also 'Philosophy, attitude to life and messages for others'.

Last reviewed August 2017.
Last updated August 2017.

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