Motor Neurone Disease (MND)
Philosophy, attitude to life and messages to others with MND
Being told they had MND was a devastating blow for almost everyone. Many were shocked, saddened and became depressed; some could not believe it, and many asked themselves “Why me?” (See sections on 'Immediate reactions to diagnosis' and 'Emotional lability, depression and low mood with MND'). However, most people felt it was important to find some way of accepting and adjusting to what was happening to them if they possibly could, both for their own peace of mind, and for the sake of their families. They wanted to encourage other people with the condition not to give up and to realise it was still possible to get a lot of enjoyment out of life. One mother with an inherited form of MND said she wanted her children to have a positive image of life with MND, in case they developed it when they were older (see Interview 22 - Liz's story). A young father who was struggling with depression hoped others would fare better than him.
He spent too long under a cloud when first diagnosed, and still feels bitter and frustrated at...
Of course trying to be positive was not necessarily easy, especially when progression was more rapid. The partner of a man with bulbar onset MND said,
“People come to us and say, 'Oh, gosh, you're doing brilliant, absolutely brilliant.' It takes a lot to be brilliant, do you know what I mean? Because it can get really, really distressing, can't it? But positivity, really, is what keeps us going.”
Some people took longer than others to reach a calmer or more positive attitude, and some felt they were still struggling. One man said he cried every day for 6 months, before he could say to himself “Enough is enough. I've got to try and stay positive.” (See Interview 32 - Vim's story). Many people said they still had bad days, even though they tried to keep positive most of the time. We talked to several people who had been recently diagnosed who were still shocked and upset, but others felt too raw to be interviewed at this stage. For example, one man who contacted us thought for several months about taking part, but in the end decided he was emotionally not ready to talk about it as he still felt so destroyed by the diagnosis eight months on.
Several people who did talk to us had experienced quite prolonged bouts of depression, feeling unfairly robbed of a future. (See 'Emotional lability, depression and low mood with MND .') Not everyone can come to terms with MND or even wants to. One woman said that her husband still found it very hard to meet people because he hated what the condition had done to him.
“He didn't want to stay in contact with old neighbours and this kind of thing, because he really didn't feel comfortable. He was such a big strong man, and suddenly he sees himself as not that at all. He sees himself as less of a man, which he isn't. Because anybody who does see him says how well he looks…But he feels, and that's so important to him.”
A few people, especially some who were older when diagnosed, had reached a degree of acceptance. Some looked back thankfully at a good life, and many contrasted MND with life-long disabilities, or with illnesses such as cancer which might involve more pain or unpleasant treatment. Some felt their experience had given them new insights and a different view of life, including one man in his sixties who said, “I'm not disappointed, I'm happy. In fact I think the challenges I face are making me a better person.”
Drawing on Hinduism and Buddhism, he accepts MND as a guest in his body. They have to live...
I feel if I panic about it I'm actually stopping, I'm creating a aggravation between that, and it can happen it may harm me. I don't want to make the guest angry about the thing, that it could do drastic, you know, sort of things. So we want to live together in peace really. That's my philosophy.
Where does that philosophy come from? Is it you personally? Is it a religious position, or?
Well, I have, I mean - well, of course I have, I have heard from Buddhism also. You see in the end the balance, the peacefulness is more important, that - the middle way, it's the middle way. And that middle way is that we both are together happy. There is a, a story behind this, a Chinese story about the bull and the little boy. How you tame, this little boy had to tame the bull. The bull is the more stronger. The disease is more stronger, which I know nothing about. And how to live with a stronger person, which is just one of those things. And it's like, there's so many steps about this, how to deal with a stronger personality, rather than going and bashing also. That doesn't help. So there are ways of tackling it. And the story - I'm not, it's vaguely I know about this story, the tackling the bull, and the, both of them live happily. The boy sits on the, on this ox and he's playing the flute, and the ox is going away. It's so beautiful this story. And I believe in that, that - I mean this disease, I know nothing about. The, how strong, how bad it is doesn't matter to me. Whatever the nature of the disease is, is the nature of the disease. That disease also cannot do anything. That's the nature of it. A snake, we always are afraid of the thing, of the snake. It's our own fear. But the snake will only do what that nature of the snake is. So why should we worry about? This is the way I look at the disease.
As she's 70 she's more interested in quality of life than quantity, but she would probably think...
She has been lucky to have a good life and happy family, so she doesn't think 'why me?' A vicar...
Do you ever stop and think, 'Why me?' though? Does it?
I don't actually. Because as I say I have, I did have a wonderful childhood, and I've got a wonderful husband, a fabulous family, loads of friends. I've had some beautiful holidays. So I've been lucky. Obviously I would like to have got to my 80s, but you've got to go some time, haven't you? And... no, in fact I talked to a vicar and he said, 'I bet you thought, 'Where's God?'' But I said, 'It's nothing to do with God, is it? He doesn't give you these diseases. He teaches people how to cure you.' And I thought that was a funny thing for a vicar to say. He said, 'I bet you felt like shouting at him, at God.' I said, 'No I didn't. It's up to me and him, isn't it?'
At 76, she can look back at a wonderful life, and she feels lucky she has no pain. She thinks...
One of the things we also have messages or advice to other people who have got newly a diagnosis of motor neurone disease. Is there anything else in the time that you have had that you could advise'?
I think probably I have said it all, haven't I? Because it does so much depend on how old you are. I have met other people who are young and that is terrible for them. But for me, no. I can only say, well, whatever age you are you have got to get your head round it. You have got to accept it. I would always say don't deny. You know, don't be in denial. It doesn't help. Accept what you have got. I sound frightfully pi, don't I? That is all I can say, really.
He doesn't dwell on the condition but it's an opportunity to sort his financial affairs and plan...
However, some people, both young and old, remained angry and depressed. One woman whose 81-year-old father died of MND was critical of what she called the 'grin-and-bear-it philosophy'. Her father was very afraid of death, was profoundly depressed by his inability to speak or move, and remained unable to come to terms with what was happening. She said'
“He was always completely there, completely aware, completely able to imagine and think about his situation. And excessively bored, and all day and all night - sleep doesn't come quickly to somebody who hasn't moved, you know. They're not tired. So it was like disappearing in quicksand over six months, taking that long, and knowing what was coming.”
While many people advised others that the best strategy was to face what was happening and accept it, others found accepting their diagnosis hard and said their way of coping with MND was to try to ignore it or deny it. This was especially true of several younger people, including those with children. Denial worked very well for some people; others said it helped them cope for a while, but was hard to maintain.
Their way of coping was to ignore the condition. It's only more recently they've admitted it to...
Peter' Yeah, yeah. Yeah.
Ann' We didn't, I mean for two supposedly intelligent people [laughs] we dealt with it in perhaps a strange way...
Peter' Yeah, yeah.
Ann' ...but it was our way. And it's only in the last four years that we've admitted to ourselves that he has got a form of motor neurone. I mean, we couldn't even say the words really, could we?
Peter' Yeah, no.
Ann' We can say it now because it's not, you know, as dire as a full-blown motor neurone is.
Can you just..?
Ann' We're just grateful that he can do what he can do. And I'm just grateful he's still here, as we all are [Both laugh].
He doesn't want to know much about the condition. He tries to block it out and think he hasn't...
So when he gave you your diagnosis.
I didn't want to know nothing about it, because I, I had to deal with it in my way and that's why I didn't want to know nothing about it. I still don't, to be honest, I think.
That's how you cope with it?
That's how I cope with it yeah. The little I know the better init? And then it can't go wrong can it? What I don't know it don't hurt, init? That's why I, I'd sooner block that out. I try to think I haven't got it.
Okay, so do you think the way he told your diagnosis was the best way he could've told you, for you?
Oh well I know I had summat it was better finding out. The waiting, I had to wait about a month to find out what I had like, you know what I mean? So it was quite, that was quite hard work but once I knew, just take it on the chin init?
So it was quite hard work, tell me what that was like?
Waiting for the diagnosis.
Well, I had to be patient I suppose didn't I?
[Mmm] What were you thinking at the time?
What have I got? But no, I wasn't thinking about it actually. I didn't want to think about it. I didn't want to know what I had. That's the thing that, I tried to block it out. That's all.
Okay, so you came home, were you with your mum at the time?
Yeah she come to London with me, yeah.
But we went shopping afterwards, so that was alright. Take my mind off it.
For a long time she managed to be 'happily in denial' but then reality set in and her whole life...
People recognised that offering advice to others was difficult, partly because of different personalities and attitudes. As one woman said,
“You just have to get on with it in your own way. There is no right or wrong way. It's what's right for you. And people might say, “Well, I wouldn't do it that way.” But you have to do it your way.”
Offering advice was also difficult because the condition affects people in such different ways. In particular, some people with PLS (primary lateral sclerosis) and PMA (progressive muscular atrophy) felt they could not presume to advise people with other forms. On the other hand, the very fact that the condition was so variable could be a cause for hope. (See footnote on less common types of MND).
No one can predict how the condition will affect you, so never give up hope.
So you feel people ought to just kind of put it to the back of their minds?
Yeah. I think it's all at the back of your minds, yeah, yes. And the longer you can have it at the back of your mind the better off you are, yeah.
Is that how you deal with it?
That's how I deal with it, personally. And as I say I've gone six years now. And I know quite a lot that haven't, yeah.
At the same time, many people did want to offer encouragement and advice from their experience. Adopting a positive attitude, keeping life as normal as possible and getting the most out of every day were at the heart of this advice. However, very different strategies were suggested as the best way to achieve this. A key dilemma was how to deal with the repeated adjustments needed as the condition progressed. Some felt it was best to put it to the back of your mind, not think too far ahead, and deal with challenges as they arose. An alternative approach was to actively accept the condition, adapt to it, find solutions and plan ahead - for example anticipating what equipment to get in place. In practice, many people found they had to strike a balance between these approaches that suited them.
They try to live a normal life. It helps to plan ahead, but you have to deal with challenges as...
And we just try to keep it in a box somewhere. And all of a sudden, it's a bit like a jack-in-the-box. It pops its head up and then you have to deal with it, and it goes back down again. And the horrible thing with motor neurone is that sometimes it's not one jack, one jack that's coming out the box - there's ten of them. And I used the analogy just recently with somebody that it's like at the fairground where you've got all these heads coming up and you've got a mallet and you have to go bang, bang, bang. Because you can't predict what and when things are going to happen. So whilst I say that we are proactive and we do try and get things in place before anything happens, sometimes it's taken out of your power completely, and that's when you're at the mercy of the medical people. And that's where we've had one or two experiences that have not been so good. So on the whole in terms of managing it, we've got a very good team, managed on a day-to-day basis. It's only when it comes outside of the norm, and you're going into a strange environment that you feel a bit vulnerable with it. And you have to sort of like kick in and be very, very assertive about things.
He tries to find a balance between planning ahead but not thinking about it all the time. Each...
That's all I can say on that [laughs]. Because it's different for everyone. Because you might have PMA and it might be in your arms so all the things that have happened to me it's irrelevant to them. So, you know, they need to be looking at other things before I have.
His advice is to keep life as normal as possible and think positive. At the same time you need to...
He tends to put MND to the back of his mind and lives life how he wants. He uses the motto 'make...
What about, has it, has it changed your outlook on life?
Oh, very much, yeah, yeah. A friend said some time ago that this isn't a rehearsal. This is it. The motto of the MND Association is 'Make every day count', and that's what we've been doing.
Has it changed you from being an ostrich, or do you still [laughter] stick your head in the sand?
I tend to still stick my head in the sand, and try to live life very much as I want. Because I like travelling, and in the last three years we've had a round-the-world trip, we've been to Malta, South Africa, a cruise in the Caribbean, a cruise in the Mediterranean, amongst others. So I'm certainly making every day count.
He tries to make the best of a 'bad hand' of cards. He advises others to inform themselves and...
Advice is difficult. I would advise them [newly diagnosed people] to read as much as they could about the disease and other people's experiences, because it does affect everyone differently. There is help available, and I think you have to swallow your pride and ask for it. With respect to an attitude towards the disease, I would say, 'Don't give in. Just keep doing what you're doing for as long as you can.'
Some adopted more of a fighting approach, challenging the condition and refusing to let it get them down.
She feels religion has little to offer. She relies on her own fighting spirit, but thinks you're...
And I've always felt that I'm quite a strong person. I don't stand any nonsense from people. If people have a cold, they've got a cold. They're not dying, they've got a cold. And, you know, I'm not going to sort of look after them in bed because they've got a cold. And if I've got a cold, I've got a cold. And of course I'm fed up with it, but I get on with it. And I think that's the way I've looked at everything, really.
But I think if you've got the personality to fight things, you're lucky. Because that's what you're born with. I think it is a genetic thing. It's like people being addicted to smoking or drinking or gambling or something. You know, it's unfortunate that you've got that sort of personality. I've got the sort of personality where I am very strong. I smoked when I was younger, and one day I gave it up. And that was it, I never smoked again. So I haven't got an addictive personality, I haven't got a depressive personality. And I'm very lucky, really.
Keeping occupied and busy helped many people, although some found it hard to adjust to the loss of particular activities. As one woman said, “Sport? That's a huge loss. It meant everything…It's a huge loss of social life.” (See also sections on 'Leisure, holidays and travel with MND' and 'Work and career'). Some people suggested treating key events as milestones to look forward to, such as family weddings, trips or seeing children through school years. They felt this boosted morale and motivated them to keep going.
Many people commented on the importance of good support, from both family and professional services, in maintaining morale. They advised people to be willing to ask for and accept help, and many people recommended getting actively involved in their local support group. (See 'Support groups and meeting others with MND'). One woman said “Life with MND isn't a bed of roses but it is bearable if you have the right support and a positive attitude.” Another said it was only when the care system broke down occasionally that her normally positive attitude was hard to maintain.
She wants to spend every minute she has left living, not worrying. Her children and a sense of...
That's been my philosophy for a long, long time. That's the way that I look at it.
And what keeps you going? Where do you draw strength from?
I think mainly it's the children that - it is, it's the children. And I've got to - and I've got, I would say, a good quality of life. I mean, I'm supposed to slow down and I'm - but I never do as I'm told. I never have [laughs]. I'm not going to start now. But to me I've got two choices. I can spend whatever time I've got left worrying about my end. Or I can spend every time, minute I've got left living. And that's what I choose to do. I'd rather live each day than die each day. You're a long time dead, so you may as well make the most of whatever opportunities there are while you're living.
It sounds like humour is quite important to you.
Yeah, humour is hugely important. And I remember my son, we were having a debate and I kind of said he was so stubborn. And he turned round to me and he said, 'Don't take this the wrong way. But if I'm stubborn, I've got it from you, because you're the woman who won't die of MND,' [laughs]. And I think that's the way we cope with it, is humour, because if you didn't you're going to spend too long. And it isn't always like that. I do have days where I don't want to get up and I just want to hide away. And, and luckily I've got a good network of friends whose shoulder I can use. And a few weeks ago I had, my carer didn't come. And it was a misunderstanding, and she was on the sick but they didn't send a replacement. And I thought, 'Oh, that's fine.' I think, ' I'm not, there'll be somebody else that would need something, more care than me. So I'm fine.' And I suddenly thought, 'Really I'm not fine. I need to go out and do, I need her to go to the bank and I need her to go to the shop. I need her to get dressed', and none of which I could do. And I had to ring a friend, who came over and dressed me and took me out. But before we went out I did break down, and stamp, and 'Bloody MND it's not fair.' It doesn't seem that long ago that I could get up and get dressed. And it, it's usually when the system breaks down that you realise how vulnerable and how hard it is to do things that you took for granted.
He advises people to stay positive and get in touch with any organisation which can offer help...
Once you've accepted you have the condition you can start to get support in place and look...
Accepting help and adapting to changing levels of independence is also discussed in sections on 'Mobility, arm and leg weakness with MND' and 'Aids, equipment and adaptations with MND'.
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 the MND Association's website.
The MND Association provides a range of information sheets, including 2C: Primary Lateral Sclerosis and 2D: Progressive Muscular Atrophy.
The MND Association also hosts an online forum for all people living with or affected by MND.
Last reviewed August 2017.
Last updated August 2017.