Motor Neurone Disease (MND)
Eating, swallowing and breathing with MND
Eating and drinking are an important part of life, not just because they are necessary but also because they are enjoyable social activities. For people living with MND, eating may become more difficult for several reasons. Firstly, with a weak arm or hand it may be hard to use cutlery or lift things to the mouth. Secondly, when MND weakens the muscles around the throat, mouth and tongue, this can cause difficulties in chewing and swallowing. Sometimes people choke on their food or drink. Some also experience excess saliva, which can add to the problem.
People talked about their experiences of eating, and shared some practical tips. These included'
- using special cutlery and arm rests to support the arms
- raising the plate by placing it on a box or a few books
- drinking through a straw, including a 'Pat Saunders' valve straw which stops the liquid going back down (however, using straws may risk aspiration if someone has swallowing difficulties, where drink may ‘go down the wrong way’ into the airways)
- picking high calorie and high fat foods
- trying out different textures and types of food
- eating little and often, and not trying to eat a main meal in the evening when tired
- trying cold drinks and foods such as ice cream.
Some people had a feeding tube inserted into the stomach through the abdomen, known as a gastrostomy. There are three different types of gastrostomy that might be used. You can read more about their experiences in 'PEGs, RIGs, PIGs and ventilation'. Some people said their appetite was unchanged, while others said they lost interest in food.
She lost weight and was advised to eat high calorie, high fat foods and fortified drinks. A big...
She lost weight and was advised to eat high calorie, high fat foods and fortified drinks. A big...
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They haven't actually weighed me at the hospital recently because they can't get me on to the weighing chair, because they didn't have a hoist. But I have found that I've put a bit of weight on round my bum, which is not what I would like really, but it makes sitting a lot more comfortable. And when I got very thin I was noticing that sitting on any kind of hard seat was getting uncomfortable. And I didn't want to get bedsores or pressure sores or whatever they're called. So I'm quite pleased I've got a bit of weight round my bottom now. But I don't really want to put too much more on because my husband still lifts me to transfer. He can't be bothered to wait while I transfer on a board. He'd much prefer to get things over quickly and lift. And I don't want to get any heavier, or he'll get a bad back and then we shall both be in real trouble. So I have changed my diet to a certain extent.
I do try to keep plenty of fruit and vegetables going in, because I don't want to get constipated. And I have some fibre stuff which I have mixed in with my Ovaltine every night. So I do have to sort of work things like that. Most of the time I don't feel hungry, and looking at a great big plate of dinner is not very exciting. It's quite daunting in a way, and I just have to keep on poking it in. You just get your spoon and you listen to something on the radio and just keep doling it into your mouth and swallowing it and hoping that you're doing the right thing. If I had to decide when I was full, I'd decide I was full after three mouthfuls. That's about as soon as I start to think, 'Oh, I don't want any more.' So you just have to keep on working at it really, that's the thing. I found tiramisu was very easy. That slips down very nicely. So when Sainsbury's had a special offer on tiramisu in the summer we got large amounts of it. And I did find that was one thing that slipped down easily, and was nice. But generally, because things don't taste very nice, especially savoury things, you just don't feel inclined to go on eating them at all. I used to love smoked mackerel, but it doesn't taste like smoked mackerel any more, it just tastes like something really, really salty and it just doesn't have the roundness of the flavour. So things just go off the menu, really.
Do you go out to eat at any time?
No, because it's difficult to eat in public. I will occasionally go and eat something that I can eat with my fingers or perhaps something that I can spoon up. But I don't take my arm support when I go out, so it's got to be something I can manage fairly easily without the arm support. And as time goes on I feel less and less inclined to go and eat in public, because I don't want to have people watching me and wondering what I'm up to. So I think that's something I would avoid in the future
She still enjoys her food and eating out, even though she thought she'd be embarrassed about...
She still enjoys her food and eating out, even though she thought she'd be embarrassed about...
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Most people valued the advice of occupational therapists, dietitians and speech therapists in getting round eating and swallowing difficulties. However, some people did not like the thickened drinks suggested - one woman said they made her husband feel like coughing and choking, and others said they were just not very appetising. Some people also said they had problems during hospital stays when staff did not know much about MND and gave inappropriate foods, for example things that were too hard or crumbly, or low fat products.
Difficulties in swallowing sometimes led to a choking fit. This is usually partial choking causing a coughing fit, rather than a blockage, and just takes a little time to clear. Nevertheless, people who had experience of this said it felt frightening, and it can be for carers or others nearby at the time. One woman described what choking fits were like for her and how she has learnt to overcome them. She wanted to reassure others living with MND who are worried about choking. With appropriate symptom control and palliative care, choking is unlikely to be a cause of death.
The first time she choked she was terrified. Now she manages it by staying calm. Choking is unlikely to be a cause of death with MND.
The first time she choked she was terrified. Now she manages it by staying calm. Choking is unlikely to be a cause of death with MND.
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That first - [And there isn't] Sorry. That first time, did it resolve itself?
Eventually.
OK.
And once, it's kind of, if I stay calm and try and control my breathing and lean forward, that usually helps. But in the early days I didn't know that. So my instinct was to gasp to try and get air, which actually made the choking worse than calming down. And I remember walking around hanging on to things and trying to, thinking, 'If I keep moving, air will get in.' And I actually found out that that was the, one of the worst things you can do. But it's the, instinct kicks in, and you just do what you think.
And when you've had the ambulance out, by the time they get here has it resolved, or was it?
Fortunately the first time, which was really, really scary, it was just - well, it was this time last year. My son, I was eating and suddenly was choking. It was the first time I'd had an attack where I couldn't get any air. And I was aware that - I had a warden, so [daughter] rang the warden, who rang the ambulance, who rang back. And the next thing I knew, I apparently passed out, and my son pulled me by the legs on to the floor and put me in the recovery position. And once that was done I got air and started to breathe. But while all that was going on, I was kind of aware that my daughter was on the phone, and I was thinking, 'I'm choking here. Who are you talking to?' kind of [laughs], not realising that she was on the phone and it was the paramedics calming her down, and obviously to relay to my son what to do. But I was totally oblivious to all that. And I remember lying on the floor, getting my breath, thinking, 'Nobody knows where the Christmas presents are. They, I've bought them but nobody knows where I've hidden them.' And then the other part of me was going, 'Don't be stupid. Nobody chokes to death with MND. So why should you be the first one? I'm not going to.' But that was pretty, very, very frightening.
It is something that a lot of people are afraid is going to happen to them'
It is, yes.
'isn't it, choking to death? I mean, what would you say to people from your experience?
Oh, the choking attacks are very, very scary, but it's very unlikely that that will be the cause of death. It’s more than likely respiratory failure. It’s, I don’t think anybody has actually choked to death with MND. But people think that that, that is how you’re going to die. But they are pretty scary. And the second time was a bacon sandwich [laughs], when my carer was here. And she, my son told her to put us on the floor and he rang. And it seems that once I’m in the recovery position I’m fine. But I remember asking what was the best thing to do. So that if it happened outside, could somebody just put me in the recovery position? But apparently that might not work, depending on where the food’s lodged. Touch wood [touching head], it’s worked so far. It’s a standard joke now. I always say to everybody, “Well, if I choke, shove us on the floor.” [laughs] But.
Is it always food or is it sometimes just--?
It can be liquid. Anything. And it can also be if you’ve got a cold. When I have had a cold, when I get up in the morning and it’s chesty or, then I can choke just on that. It can, there isn’t really any rhyme or reason. I mean, I avoid the obvious like biscuits and cake and peanuts, but in general it can be a mouthful of tea. The first time I choked it was a, it was a mouthful of water. So you just don’t know what’s going to happen.
Footnote: Choking is feared by some people, but with good symptom control and palliative care is extremely rare and very unlikely to be a cause of death.
Some people talked about their experiences of breathing problems when the muscles used in breathing started to become weaker. They described feeling out of breath and tired, especially if it was affecting their sleep. Some people were using non-invasive assisted ventilation, a small machine which supports the person's own breathing by providing extra air through a face mask or nasal tubes. To read more about their experiences, see 'Feeding Tubes (PEGs, RIGs, PIGs) and ventilation'.
Other people could manage their breathing by using exercises, posture and relaxation techniques. Some found aromatherapy helpful. A few said they had temporary breathing problems, perhaps when they had been ill or over-tired, but then things had improved again. Regular monitoring of the condition is likely to include breathing ('respiratory') function tests. Some people also had such tests before a PEG operation or before air travel to check they'd be all right.
In the night her nose gets blocked and she can't swallow. She and her carers have found sleeping...
In the night her nose gets blocked and she can't swallow. She and her carers have found sleeping...
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Your thyroid?
Daughter' Nasopharynx.
Right. Is there anything that you do to help that? Anything that you can do?
Maryse' Yes, it will be later' There might be some help with sucking the saliva. So because of that, it's, it is very frightening not to be able to breathe in the night. In a, in the recliner, what is it called?
Daughter' The recliner chair. We tried several, didn't we, before we got one that we found was okay.
And that helps with your throat, with the swallowing?
Maryse' The carers and I have gradually learnt how to position me. It's only in the last week that it is getting better. In the last week, example, I go to bed at 11.30. I need care between 2 and 3 and last night I slept from 3 until half past eight.
Daughter' Lie in.
Maryse' I didn't get up. I think the [inaudible] makes me a bit drowsy. So what are the changes? I was taken to lunch on Wednesday and it was tender fillet of steak, really perfect and my friend cut it for me. And I realized that the chewing is fine, the swallowing is fine in terms of food but my tongue has, is going or partly. It's not moving as it should.
He advises people to 'make MND live with you, not the other way round'. He describes simple...
He advises people to 'make MND live with you, not the other way round'. He describes simple...
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I didn't realise how bad my lung functions had gone until I went on to it. I do do simple breathing exercises a couple of times a day. Nothing too strenuous. I generally lean forward on to a table or if I'm in my wheelchair, on the arms in that position and I do up to a maximum of ten deep inhalations each session. But don't overdo any exercise because it makes you tired and when you're tired you feel worse. Keep the exercises simple but regular.
He tries to keep active. Singing in music therapy helps his breathing. He had breathing problems...
He tries to keep active. Singing in music therapy helps his breathing. He had breathing problems...
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Have you had breathing problems, apart from the time when you were admitted to hospital?
It, at the hospital it was because of that problem, of the ulcers.
Yeah.
But afterwards, at the point of time, it was about six months ago, seven months ago, I started to have, let's say, a diet which was not enough and I wasn't sleeping enough etc. I got tired. And it was affecting my, my breathing capability. And then at that point - and now I'm feeling much better because I've changed this situation. And my GP helped me by medication as well. And now I'm really much better and the breathing is, is working fine.
What medication did you have for that?
When, when - the medication was mainly because I had some bowels problem, because at that time not having a proper diet I started to have really problems and diarrhoea etc. And so I went two weeks at the hospital at the end, at this Christmas, and because I was anaemic. And at that time then they started to give me some steroids etc. And the steroids make a big difference. And I'm now, I've tapered it down now, I'm getting it down, out of it. But it seems that I have recovered, recovered quite well. All the blood tests now are showing quite a good recovery and good thing, which has taught me a lesson. Because it's always the same problem, it's one thing bringing the other one. At work I have nobody to help me to go to the loo. And then because I'm not able to transfer from this, the other chair I have to the, to the toilet - which there I have a, a riser as well which has been bought by my company - then I tend to say, 'Okay' to refrain myself going there, and of course refrain myself to keep my dignity. I don't eat at noon, I don't drink. And so I start to get a problem. So from one situation I've brought another problem. And this is where I taught my, learned my lesson, because I would cope with MND, but having a problem linked with all the bowel etc, I don't like it. It's, it's worse. So I said, 'I can avoid that' so.
Her lung capacity is reduced but her breathing is still good. Occasionally she feels a bit out of...
Her lung capacity is reduced but her breathing is still good. Occasionally she feels a bit out of...
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Several people said they recognised that anxiety or panic about breathing could contribute to the problem. Some who did not normally have breathing difficulties said they started to imagine they did. One woman was told she had been hyperventilating without realising it.
She got into a 'vicious circle' of anxiety, hyperventilating and imagining she couldn't swallow....
She got into a 'vicious circle' of anxiety, hyperventilating and imagining she couldn't swallow....
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Because I knew that he'd told me that, so I knew it wasn't a progression of the disease, so I stopped worrying. I had this sort of vicious circle where I was worrying, and getting it, and worrying and... In fact just one other thing, when I was diagnosed I started swallowing about [laughs] three or four hundred times a day. Because even though a sane person would know you don't suddenly get bulbar symptoms with motor neurone disease the next day after you're diagnosed, obviously it became an obsession, and I couldn't stop swallowing and I strained my throat. And my GP, with whom we're very friendly, had rung me up, and I told him. And he said, 'Well, you've got to stop doing it.' I said, 'I know, I know I've got to stop it. But it's really difficult to do it.' So I had to get over that as well and stop that.
How did you get over it?
I just kept telling myself not to be stupid. I mean, you've got to, you've got to be sensible. You, otherwise your whole life just falls apart. And, you know, people say to me, 'Oh, you're an inspiration, because you go to the gym, and you do that.' And I don't want to be an inspiration. Well, I suppose in a way I could be, because it would help other sufferers who, who, you know, need something to guide them. But I do it for myself, really, because it just keeps me normal. I just want to be as normal as I can. And I don't worry about the fact that people see me walking as if I'm drunk or, you know, sitting in my wheelchair. I, you just have to ignore that and, and just do things the way you always used to do them, as well as you can, based on your disability, really.
His daughter used to panic about breathing, especially when using the loo, but she could control...
His daughter used to panic about breathing, especially when using the loo, but she could control...
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But it was on the loo that she was having these panic attacks, and she could calm down from them. She could have them on other occasions but again with concentrated breathing exercises she would come down from the panic. Now whether that was just the brain compensating for something that was happening anyway in her, I mean, I'm not a medical person so I don't know quite exactly how it works, but I know that there are some parts of the brain that control our involuntary muscular activities and there are some parts that help to control them if the involuntary systems don't seem to work.
The MND Association has also developed what is known as their 'Just in Case Kit'. This is a small box supplied to a named individual through their GP. It is used to store medication, prescribed by the GP, that can give immediate relief in the case of breathing difficulties, choking or related panic. It contains leaflets with useful advice and instructions for family carers and health professionals. Most people will never need to use the kit, but just having it readily available at home can help give reassurance and confidence. More about the 'Just in Case Kit' can be found on the MND Association's website.
The MND Association provides a 'Living with MND guide' and a range of downloadable information sheets tube feeding, breathing, ventilation and air travel. They have also produced a recipe collection of easy to swallow meals.
Last reviewed August 2017.
Last updated August 2017.
Last reviewed August 2017.
Last updated August 2017.
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