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.

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 MND Association website provides information sheet 7A: Swallowing difficulties, which includes guidance about choking.

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.

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. 

The MND Association website includes various resources about eating, swallowing and breathing, such as their Eating and drinking guide, sheets 7A to 7D on swallowing, tube feeding and speech, and 8A to 8E on breathing and ventilation.

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.


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