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Motor Neurone Disease (MND)

Emotional lability, depression and low mood with MND

Emotional lability and depression are two distinct conditions affecting some people with MND. Treatments are available for to help manage both emotional lability and depression.​ Depression may be experienced in reaction to the diagnosis or the challenges of the disease and it is quite normal for people living with MND to feel low at times. Emotional lability is a term used to describe a tendency to laugh or cry unexpectedly at what might seem the wrong moment.

Emotional lability is often a temporary symptom that reduces over time. It is more common to experience emotional lability if your ability to think and reason have been affected. However, it does not necessarily mean that other changes to thinking and reasoning will happen.

People talked to us about a range of emotional changes and disturbances. One woman who had experienced emotional lability said she had quite liked the euphoria of laughing but the crying was distressing.

 
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Her husband's emotional reactions have become quite different, and he laughs and cries...

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Age at interview: 59
Sex: Male
Age at diagnosis: 58
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Well, I think that is part of the illness, your emotions. I mean, Ken cries very easy, which you would never have done years ago. Or you laugh. I mean sometimes Ken laughs at things, and me and my son sit here and I think, 'That isn't particularly funny', you know. Or we'll be in the kitchen, and of course when Ken laughs it comes out with a bit of a funny noise, and I think there's something wrong with him. And I come rushing in here and he's just laughing at something stupid on the telly. But I think you find things more funny than crying really, don't you?

Have you ever taken any medication, any antidepressants or anything to deal with it?

No, you're not one for taking pills and potions really, are you? Ken's been a vegetarian for years. He's always been fussy about what he puts into his body.

 
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He found it difficult to control his emotions. He was worried about becoming reliant on an...

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Age at interview: 60
Sex: Male
Age at diagnosis: 57
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MND plays havoc with your emotions, and at times it becomes very difficult to control them, whether it's laughter, happiness, or sadness. The emotions began to manifest themselves in the inability to control tears whether they were tears of happiness, even down to watching someone win a game show on TV, or sadness if they didn't win!

It also affected my sense of humour to the point that I didn't have one, the process is so slow and gradual that my wife did not realise it was happening.

About 9 months ago my consultant recommended that I take an anti depressant, which I resisted for a while but eventually agreed to and was prescribed citalopram 10mg tablets. The reason I resisted is probably down to two issues, the main one is that I do not like taking tablets on a regular basis, and secondly is the addiction to this type of drug. On the second point I was assured that the type of drug being recommended was the least addictive of this family of drugs.

In reality the drug has helped tremendously particularly with my overall demeanour and sense of humour. My wife realised at this point that my sense of humour was back (she was not sure this was a good thing!).

It also helps with the control of the emotions, but there is still a tendency for them to surface very quickly, but I am on the smallest dose of the medication possible and want to stay there.

Looking back, some people thought they had experienced emotional changes before diagnosis, though at the time they might not have realised or understood it. One woman said, “I would laugh or cry excessively and it bewildered and disturbed me because I couldn't work out why it was happening.” One man said his wife's emotions had become very changeable well before diagnosis.

 

Di's emotions became volatile a year before physical symptoms emerged and it caused some...

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Age at interview: 55
Sex: Male
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And we'd also been to see another counsellor, in fact we started to see this counsellor before Di even got ill. And so for a kind of couple's counselling, because I think although the first physical symptoms emerged with Di's hands, the disease affects your emotional state as well and you get very powerful emotions, become very emotionally vulnerable. And that had actually happened for a, over a year before that first physical symptoms had emerged. And although there's no way of telling, I personally feel that that's the first sign of the disease. And Di became emotionally very volatile in that time and distressed and that, this - so we were, it was like a rubber band. We would suddenly be very close and warm with another, and suddenly the slightest domestic disagreement would blow up into a huge row and she would threatened to leave me and all sorts of things. And I had no idea of what was going on. It was all very strange. And she was under a lot of pressure at work and at that time I just thought it was just you know just stress, strain because it was so unlike her. She was very solid in many ways usually. We'd just work things out. This was this was different.

Emotional lability is marked by emotional behaviours which are in some way out of proportion or inappropriate to the situation, for example laughing at things which are not funny or crying when someone tells a joke. These behaviours are not always accompanied by a true feeling or emotion, but sometimes the act of laughing or crying can in itself make one happy or sad. Therefore it is perfectly possible to have emotional lability but to have a normal mood. When an antidepressant is prescribed for emotional lability, it is thought it has a specific chemical effect which is different from the mechanism for treating depression. The doses used for emotional lability are usually lower than for depression. However, there is some doubt about how effective antidepressant use is with emotional lability.

Low mood is a natural and understandable reaction to a serious diagnosis such as MND. Not surprisingly, many people described feelings of intense sadness, bleakness and loss of hope, especially straight after diagnosis. (See also 'Immediate reactions to diagnosis'). Over time, many said these feelings became less intense, or they managed to push them to the back of their mind most of the time, but they could still become emotional very easily. Some made the point that this was different to emotional lability and was just a normal response to a serious life event. Both frustration and sadness played a part, and worries about the future. Several people said they were grieving for the loss of physical functions and the life they had expected to have.

 

Little things can still trigger great sadness, especially thinking about his grandchildren, but...

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Age at interview: 60
Sex: Male
Age at diagnosis: 59
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And it's amazing what can change you. It can be a simple remark, and you can be crying, and the tears will just stream down your face. You don't know why in real terms. I mean you, it's emotion, but it's just been triggered by something, and it can be something really simple, you know. And with me it, it could be, somebody says, 'Oh, I'm taking the lad to the match at the weekend' you know. And suddenly you start crying because you - 'I'm not going to be able to take somebody to the match at the weekend.' [laughs] It's actually bloody stupid. But it is, and especially where my grandsons are concerned it's, I get very emotional that there are, our relationship can't be what it is. I mean my brother came over, he lives up North, and he came down and one of my grandsons was here at the time he was here. And he picked him up and started swinging him. And I just burst into tears because I can never, I've never been able to do that to my grandson. And it, it's so emotional that - just something like that, you know, and.

I don't think it's part of the condition that you become emotional. I think it's a reaction to the condition. And, yes, I can be very laughable, and I'll make jokes and - because that's another defence against it. And you can get very surly as well. You know, 'Don't you realise that's a disabled space?' you know, 'Parking your bloody car there.' And it's a reaction to it, you know. And you compensate for it, because you don't want to happen what's happening to you, and you compensate for it by either reacting emotionally, you know, because you can't do things, you're not going to be able to do things. I went out and bought everything I'd ever want to give my grandsons, and went and bought it in a day, you know. They got stuff that's going to last until they're bloody teenagers [coughs] that I would have bought, because that's part of what granddads did for boys. And I'm not going to be there, you know.

Fishing rods, knives, all sorts of things, you know, cranky stuff. But it's a reaction to it. And it's worse at the beginning. When you're first told, you, you think somebody's just told you you're going to die Saturday. You know, 'It's Friday night now, so Saturday you're not going to be here.' End of story, you know - don't need to think any further than that. And of course it's not. You are going to be around for a while, you know. Nobody can tell you how long, or they won't tell you how long, I'm not sure which. Probably because they don't. The disease affects people in different ways, it's not all the same for everybody. And again, I think part of that is how your make-up is. If you're a fighter you're going to last longer than somebody that gives in to it or somebody that refuses to accept it. And I think that's one of the big things. Accept it, embrace it. Once you've done that - and that's hard, it really is hard. I found it very difficult. But once I'd embraced the fact that I'd got it, I could then start compensating for it, with equipment.

 

A year after diagnosis, some days he feels fine, but other days something frustrating can happen...

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Age at interview: 40
Sex: Male
Age at diagnosis: 39
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It's just coming up a year since I was actually diagnosed, yeah. Well, I have good days, I have bad days. Some days when you're out and about or you're enjoying yourself, you're doing certain things that you want to do, you can almost forget, you know. The sun's shining on you, you're, you're having fun and there doesn't seem a lot wrong with the world. Other days you're perhaps set off by, I don't know, a simple inability to achieve a mundane, ordinary task, you know, something trivial. And it just kicks you off and you're', you're back there again, you know, and it's, oh, frustrating. And then because you're frustrated you do something else, say the wrong thing in front of the wrong person. Then you feel worse because you know you've, you've hurt somebody you didn't want to hurt. It's not their fault. 'In better moments I guess I know it's not my fault either. You can forgive yourself at certain times, other times you get more guilt and you just feel worse. But, yeah, there are times when you are able to - not necessarily forget, but it's far enough into the back of your mind that it's not as big an issue. 

Other days you, you struggle more with your emotions, with your physical disabilities. You tend to be more, you tend to take longer to recover from exercise, from functioning. I've always thought myself quite a fit person [laughs]. I'm a pale shadow of the athlete I once was. And as you're tired, that affects certain functions. So it may be that it's still something you're able to do ordinarily, just not now. And that can lead to certain - it can build the frustration, you know.

 

She thinks she's emotionally quite tough, but every few days she has to cry. It's a combination...

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Age at interview: 53
Sex: Female
Age at diagnosis: 51
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I've got an emotional toughness. I don't know where it comes from but I have, I think. To some extent. On the other hand I'm incredibly needy. So maybe that doesn't match up. I just want somebody to satisfy those, that neediness every day. and I've got nowhere to go. And that felt awful, awful, awful, and yet almost empowering. I thought, 'Oh God, you've got to do this all on your own. And I think you're going to as well.' So the tears flow. I can turn them off, now, for about maybe a four-day period. That doesn't do me any favours, turning them off for four days, because it's a terrible, terrible mess on the fifth. I can, you know, I can try to do a little bit each day, or I can save it up. But I save it up, because I think, 'Well, you've got to day three here, [own name], you're fighting it off quite well. See if you can just get another, get to another day.' And I last, I last about four, five days now. 

And then you just have to cry?

Oh, I'm in bits. Because I can't get out, I'm largely in bits because I'm - one of the reasons I'm bits, I cannot leave the house, because I can't get the wheelchair in the car until this business is sorted with the car. I've got great difficulty leaving, and I haven't got anywhere to go much. So in some respects I've got a harder bit, because I haven't got a partner. Even the wrong partner would be better than a, no partner, in many ways. Because I think they would say, 'We've got to carry on. If only for your son, you've got to be seen to be doing something.' 

Has, has your GP ever talked to you about the emotional side and whether there's anything they can do?

Well, I, no, no. I understood that people with MND have outbursts, crying. I don't think mine is that. I think mine's just common or garden, 'Bloody hell, I'm fed up again. This is terrible.' Fear overcomes me. And I feel absolutely petrified of the future. And I just feel, 'Oh, my God,' and so lonely. And particularly at the weekend, because my son goes off on a Saturday - maybe I should have asked for him to stay - but he goes off at half past seven on a Saturday, doesn't come back until four o'clock Sunday. Saturday afternoon I've got nothing to do, I can't leave the house. Saturday night, blank. Because I've hardly got any friends. I've got one or two I've roped in. I'm going spare. Plus I've got to prepare a meal myself, my arms are killing me by Saturday night, because I've gone into that kitchen so many times for so many drinks I can hardly do it. I can hardly get there. I've got terrible fatigue and yet I've got to get a meal now. I think, 'Ohh, I can't.' 

And then last Saturday, that door wouldn't shut - you know, it's a tiny thing - it wouldn't shut. And my face, it just went into a thousand wrinkles. I went - I can't describe the movement because I'd no idea where it comes from. I screw my face up and I scream. I would love to see a video of that. It must look horrendous. I do some horrendous movements that I - almost primeval - that I, I remember doing one like that once in a middle of a nightmare about 10 years ago, and there was a sound that came from, well the person I was with said it was amazing, it was from, total primeval, it was just - where was it from? I said it was from the bowels of I don't know where. I remember doing it in this nightmare, but now it almost is in the daytime ones, and I go MMMMM, like this, pushing out with my face and I go [blowing out] like this, and I scream blue murder 'at the sheer frustration of it all.

 

He describes the range of emotions he feels, including anxiety, sadness, grief and loneliness.

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Age at interview: 45
Sex: Male
Age at diagnosis: 42
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Phhhh. Well, there's quite a lot of panic and anxiety. Which is usually around how you're going to be able to cope when you're more disabled. And as time goes on you still have that but you also are able to remember that you used to panic about when, what you would do when you couldn't walk and now you can't walk and you're OK. So you sort of try and use that to help you deal with the panic you've got about what it'll be like when I can't hold my head up properly. You know, I know, I know it won't be great but I know that there'll be some sort of solution and I'll, if I've still got my family around me and so on then I'll still be OK. So there's those sort of panic and anxiety feelings.

There's a lot of sadness obviously. There's a lot of loss because you haven't really got a future anymore and you know, like me and my wife sometimes, we go and see other couples like, you know, go round to their house for tea and they come to our house and that, and they've got a future and we haven't. You know, they can talk about what they're going to do when the kids have left home and, you know, as a couple we haven't got a future really. And that's a big loss. 

And then there's, and then there's the sort of the loss of, of just the things that I would like to do now but I can't. You know, I'd like to be able to go out for a walk and I'd like to walk through the woods and I'd like to be able go down the shops without having to make a big performance out of getting somebody to help me all the time and so on and, you know, and, so there's a lot of losses. 

And also, when you're in a wheelchair like this, you're in a sort of you're actually quite cut off from other people because you're just surrounded by sort hardware. So it's like quite difficult to have a proper cuddle with anybody. Or to sit on the sofa and have my dog sit on my lap, I can't do that anymore. And things like that. So there's a lot of things that you lose and, and they are just sources of, of, you know, deep regret, because you just will never get them back again. And you also know that even now what you've got now, you'll be looking back on it six months later and thinking well it was quite good then. Because it's worse now. It's always getting worse and that's quite tough. That is very tough.

There's nothing, there's nothing very much to look forward to in terms of the illness. You know, I mean something good might happen in your life, but in terms of the illness you're always going to be getting worse. Whereas most people that've got an illness think about getting better, you know, this is a different kind of illness. And a lot of other people don't know how to relate to it. You know, that, that speak to you because they don't know what to say because all the normal things that they say to a person that is ill, as soon as they start to say it and they realise they don't make sense. So then they're just left dumbstruck then.

What other feelings are there? Well there's a lot of anger. I have a lot of frustration. You know, on a day-to-day basis because I can't do things. So I get frustrated and I get irritable. I'm usually quite a patient person but I find this, you know, this situation does like really try my patience. I get very irritable, I get very angry, you know, frustrated but well you can just you know bang things and shout and stuff, that's all you can do.

What other feelings? Those are the main ones, I think. So you can feel lonely at times. You can feel lonely because you know, you can feel cut off from people. You can spend time with people, it's often, often you feel, I feel the loneliest when I'm spending time with people. So sometimes, you know, people say, “Well, I’ll come and spend time with you”, thinking that that’ll take away loneliness but it can make you feel more lonely because, because sometimes people want to spend to time with you but they can’t get to where you are in terms of your feelings. So you’re, you’re left with it, so everyone else may be say’s having a good time and, and, and you’ve got these sort of anxiety feelings or anger feelings or sadness feelings and, and you know that the people that you’re with, they don’t really want to go there. So you have to keep it on your own and then you feel cut off from them and then you actually wish you were on your own to be honest, you know, and not having to pretend to smile and be having a good time and things.
 
So loneliness can be quite a big thing as well. Even though I’m not really lonely because I’ve got my family and everything, you can still feel lonely. And I know a lot of these things are similar for my wife as well. You know, because although she hasn’t got motor neurone disease the fact that we’re going through this and it’s like it’s us and like other people around don’t really get it and so we can feel quite cut off from other people.
 
Hmm.
 
Sometimes. That’s it mainly. Sadness, grief, I’ve mentioned that. Yeah.

Several men in particular said they had become generally more emotional or less 'macho' than they had ever been before. While they did not mind this in some ways, they could find it uncomfortable in public. As one man put it, “I'm not ashamed of my emotions. I cry in public. I don't like crying in public, but when you have motor neurone it's one of the things.' 

Some people became depressed. In depression, people may experience severe mood disturbance with significant physical and psychological results (insomnia, weight loss, irritability, feelings of hopelessness). These symptoms may respond well to treatment, even if they have been triggered by a life-altering physical illness such as MND. Some neurologists and GPs will be experienced in the management of depression, but where there is doubt a specialist psychological assessment may be helpful. Some MND or neurological clinics have a clinical psychologist as part of the multidisciplinary team. Several people we talked to found antidepressant medication helped them, and some were taking a low dose on a continuing basis. Some also benefited from talking therapies such as counselling and psychotherapy, and meditation.

 

She became very depressed and tried hypnotherapy and counselling. The hospice medical director...

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Age at interview: 41
Sex: Female
Age at diagnosis: 34
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I see the Medical Director at the hospice and he respects my wishes. He is honest with me and patient and as I experience new difficulties we discuss them and decide together how to proceed. He has pulled me through terrible depression by persuading me to take the antidepressant mirtazapine which has really helped me. Before I took it I had no appetite and couldn't sleep which was making me very weak so I'm quite sure they have kept me alive and possibly made my condition stable. I think depression is a far more debilitating illness than MND but unfortunately the two often go hand in hand. I resisted antidepressants for years because I didn't want to become dependent on what I then considered to be happy pills. I would never stop taking them now and believe neurologists should strongly recommend them to patients on diagnosis.

I definitely needed more emotional support from the medical profession early on but sadly, probably due to time restraints, none was forthcoming. I paid to see a private hypnotherapist and we worked on positive imagery; it just lulled me into a false sense of security and dented my bank balance. I was desperate for emotional support and felt rejected by everyone that I turned to. The counsellor at my surgery said she couldn't make me feel better but I could cry on her shoulder. I decided to cry on my own shoulder. I come from a traditional Jewish background but received no support from the three rabbis I contacted. The therapist at my hospice was fairly elderly and kept nodding off during our sessions which I quickly gave up. My hospice doctor rescued me mentally by letting me discuss my feelings and giving me advice. I can email him whenever I have a problem or just if I feel anxious or low and he always writes back. Because I can't speak well on the phone this communication is a life saver and I know most doctors wouldn't do the same for me. I believe I'm extremely fortunate to have met him.

 

She is determined to keep going for her children's sake, but she has been depressed in the past....

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Age at interview: 45
Sex: Female
Age at diagnosis: 37
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I think it was probably when I got past the two years and I suddenly realised that I had two children that I wasn't going to leave. I remember watching their leaving assembly in primary school, thinking, 'I'm not going to see them leave secondary school.' And that, a lot of thoughts around were negative then, 'I'm not going to do this and I'm not going to do that.' And then somehow you kind of do a turnaround. And you, I started to think, 'Well, hey, I'm still here now, so why shouldn't I be here? My children are going to need me, so I'm not going anywhere till they're 16.' And then they got to 16 and it's, 'Right, I'm going to be here when they're 18.' And I change the goalposts every so often.

Have you suffered with depression?

In the early days, yes. Especially around the time of my marriage break-up. And it's, I suppose everybody's got, you come to that point where, 'Is it really worth it?' And I did have thoughts like that. But looking back, I think you've got to get to that position to claw your way out, if that makes sense. And I think that was a turning point for me.

Did you take any medication?

Yeah, I met the doctor, put me straight on. Because I was just, I couldn't make any rational decisions. I thought that, 'What was the point?' And everybody was, I felt so alone and I had the children, and everything was just piling up and piling up. And once those tablets had kicked in, it took quite a few months, when I started to see things much more clearer and not so negative. And that enabled me to sort things out, make some decisions, and then, 'Hey, I am not going there again. I've been in that black place. I don't like it. I'm not going to be that person again.'

I take a, I think it's 10 milligrams now. At the time that I was at my worst, I was on something like 75, and I've gradually got down to 10 or 5. And I was going to come off them, but my GP thought it was better because I was stable and everything's fine, to just stay on a small dose. And also there's a lot of evidence that with motor neurone disease the chemical imbalance in the brain makes people often laugh inappropriately, or cry at the drop of a hat. That's something that's a real issue. So in some ways antidepressants kind of balance that out. So a small amount probably keeps that, that side. Because that can be really embarrassing as well.

Has that actually happened to you?

It, it has in, in the early days, where somebody would say something really upsetting and I would burst out laughing and think, you know, 'I shouldn't be laughing at this.' And it wasn't funny, but - and it's off-putting to other people. Or somebody would walk past us and make a joke one day, and I would burst into tears and think, 'This is pathetic. They haven't upset you, so why are you crying?' kind of thing. And, and that has helped with that side of it. So I tend just to take them.

One man started taking a drug called amitriptyline to help reduce excess saliva. Amitriptyline is in fact an antidepressant, and he found it reduced his emotional agitation as well as helping with the saliva.

Some people did not want or need to take medication and found other ways to get through periods of low mood. Strategies included expressing their feelings and talking it through with family; keeping up as many activities as possible and getting out regularly; going on holidays or trips; and consciously challenging negative thoughts. Some people used these strategies as well as medication.

People talk more about their general approach to life with MND and how they cope emotionally in 'Philosophy, attitude to life and messages for others'.

Carers will understandably also go through periods of depression. Carers' feelings are explored further in 'Impact on family carers'.

The MND Association website provides an information sheet to help: 9C: Managing emotions, which includes information about emotional lability.

Last reviewed August 2017.
Last updated
August 2017.

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