Eating, swallowing and breathing

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)
• 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 PEG tube (percutaneous endoscopic gastrostomy), a feeding tube inserted into the stomach through the abdomen. You can read more about their experiences in 'PEGs, RIGs 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 plate of food is too daunting. She prefers not to eat in public.

She still enjoys her food and eating out, even though she thought she'd be embarrassed about being helped to eat in public.

She has several tips to help with eating and swallowing. [Voice software interview].

The speech therapist showed her a useful tip for swallowing tablets.

His wife is sometimes sad that she can't eat what everyone else is eating. He feels guilty that he can still enjoy food when she can't.

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. People who had experience of choking said this could be frightening, both for themselves and for carers or others witnessing it. 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 good symptom control and palliative care choking is extremely rare and very unlikely to be fatal).

The first time she choked she was terrified. Now she manages it by staying calm. Choking is very unlikely to be fatal.

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 'PEGs, RIGs 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 a recliner chair helps. She finds her tongue doesn't move so well.

He advises people to 'make MND live with you, not the other way round'. He describes simple breathing exercises to use during the day.

He tries to keep active. Singing in music therapy helps his breathing. He had breathing problems when he became ill and has learnt that staying fit is important.

Her lung capacity is reduced but her breathing is still good. Occasionally she feels a bit out of breath - relaxation and aromatherapy help.

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. 

Sometimes he worries he has problems breathing or swallowing, but thinks it's really his imagination. It helps not to think too far ahead.

She got into a 'vicious circle' of anxiety, hyperventilating and imagining she couldn't swallow. She has to tell herself to stop thinking that way and not worry about the future.

His daughter used to panic about breathing, especially when using the loo, but she could control it by concentrating her mind.

Her husband uses a ventilator. She describes two frightening occasions when he briefly stopped breathing and she revived him. It happens sometimes when he's anxious.

The MND Association has developed what is know as a 'Just in Case Kit' . This is a small box supplied to a named individual through their GP. It contains leaflets with useful advice and instructions for family carers and health professionals, and can be used to store prescribed medication to give immediate relief in the case of breathing difficulties, choking or related panic. 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 also produces a guide to 'Eating and Drinking'. The guide to 'Symptoms' also includes advice on managing breathing and choking. These form part of their 'Personal Guide to MND' which can be downloaded from their website. The site also provides downloadable leaflets on PEG feeding, breathing, ventilation and air travel.

A recipe collection of easy to swallow meals can be obtained by contacting the MND Connect team on Tel:08457 626262 or mndconnect@mndassociation.org.

Last reviewed July 2010.

Last updated July 2010.