This information is for health and social care professionals.
Swallowing problems affect at least two-thirds of all people with MND during the course of their illness.
When a patient presents with this symptom, deterioration is inevitable and referral to appropriate professionals should be made without delay.
Swallowing problems in MND are caused by spasticity, largely resulting in weakness of the:
- facial muscles
- pharynx and larynx.
Problems swallowing liquids results in coughing when drinking. This may be the first sign of early dysphagia.
Other signs include:
- loss of ability to form lip seal, chew food with the tongue and/or form a bolus
- poor or absent swallow reflex
- food not moving to the back of the mouth or disappearing down the throat due to a poor or absent swallow reflex, or an uncoordinated swallow caused by weak pharyngeal muscles
- muscle spasm
- more time needed for chewing, several swallows needed for each mouthful of food and becoming tired on eating and drinking
- a wet or muffled sounding voice after eating.
This can result in:
- sialorrhoea (drooling due to poor saliva control rather than excess production)
- dehydration and weight loss from not eating enough
- aspiration and recurrent chest infection
- problems swallowing medication
- tiredness and loss of strength and wellbeing
- lengthy mealtimes, leading to food going cold
There may be a social impact, too: the person with MND may feel unable to eat with other people due to dysphagia. They may join others and take a few spoonfuls, while eating most of their meal before or afterwards.
There may be times when a person with dysphagia will have episodes of coughing and choking. Even though a choking episode is very distressing for them and their carer at the time, they can be reassured that it is virtually never a direct cause of death.
Assess nutritional intake and weight. Weight loss is often related to dysphagia but may also be due to upper limb weakness or general fatigue.
A dietitian can suggest strategies for managing this, including altered meal patterns (eg eating little and often). An early referral is beneficial for dietetic advice and support.
A speech and language therapist can assess ability to eat and swallow and can monitor for changes. They may suggest altering the consistency of the diet and/or suggest prescribing thickeners for fluids.
A physiotherapist or occupational therapist can advise on head supports and positioning.