MND Australia
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Eating, drinking & swallowing

Like so many things with MND, it can be difficult to think about your ability to swallow being affected as the disease progresses. No-one wants to have to imagine their body weakening over time.

Some people with MND, however, will experience problems with eating, drinking and swallowing. This is because MND can affect the motor neurones that supply the muscles in the mouth and throat, and stop them working properly.

It can help to have some knowledge in advance about what might happen with eating, drinking and swallowing to support you to think about and plan for what you could do to ensure you remain well-nourished and hydrated, should this happen to you.

Eating, drinking and swallowing involve complex interactions between many nerves and muscles. 

MND can weaken the nerves and muscles used for eating, drinking and swallowing. As the nerves and muscles weaken, they lose the ability to make the body perform basic functions, like opening and closing the mouth, chewing food to make it softer and easier to digest, and passing food down the oesophagus and into the stomach.  

Some of the signs that swallowing may be getting weaker due to MND can include:
  • having the feeling that food is stuck in your throat 
  • difficulty swallowing
  • coughing or choking when eating
  • dribbling saliva
  • difficulty chewing, and
  • taking a long time to chew and swallow. 
Eating plays a large part in our social lives. Eating is often a focus of social events and celebrations. Being unable to eat can not only affect you physically, such as through weight loss, malnutrition and dehydration, but it can reduce your enjoyment of life. You may feel like you’re missing out or not able to chat and catch up with others like you normally would.

There is a lot that can be done though to support your optimal nutrition and hydration, even with dysphagia (medical term for difficulty with swallowing). Drawing on support will make it easier to deal with problems eating, drinking and swallowing. You can also come up with strategies to enjoy socialising and not missing out on time with others.

Both a speech pathologist and dietitian can provide important support and guidance for eating, drinking and swallowing.

A speech pathologist helps in the management of communication and swallowing. A speech pathologist can:

  • regularly asses your swallowing ability
  • provide information about swallowing techniques and food consistency that make food easier to swallow
  • give advice on what communication aids and devices might be able to help, and
  • assist with the decision about the best time to have a percutaneous endoscopic gastrostomy (also known as a PEG – a procedure in which a flexible feeding tube is placed through the abdominal wall and into the stomach), if appropriate.

Dietitians provide healthy eating advice. A dietitian can help you to include a variety of foods in your diet, so that you consume enough calories, vitamins and minerals, and a balance of proteins, carbohydrates and fats.

A dietitian can:

  • assess your nutritional needs 
  • give practical advice on the best food choices for maintaining or improving nutrition, minimising weight loss and maintaining fluid intake, and
  • assist with the decision about the best time to have a PEG, if appropriate.

Your MND Association advisor or MND Support Coordinator can help you find your local dietitian or speech pathologist.

There are many tips and tricks around food and drink consistency that will make them easier to swallow. Your speech pathologist can provide tailored advice and guidance for you.

Some other resources that may help are;

Eating and drinking with motor neurone disease (MND) produced by the motor neurone disease association of England, Wales and Northern Ireland.  

Adjusting to swallowing changes and nutritional management in ALSproduced by the ALS Association in the United States of America. 

Having the right tool can certainly make things easier, and this applies to the utensils for supporting ease of eating, particularly with weakened arms and hands.

Occupational therapists and speech pathologist can offer you guidance about what will work best for you.

When it comes to meal time, the eating and drinking aids that can make a big difference include:

  • modified cups (e.g. two hands or wide mouths) and plates
  • easy grip cutlery 
  • non-slip mats
  • cup holders
  • collars
  • splints
  • robotic feeding devices.

Examples of equipment that is available to assist with eating and drinking is available on the Assistive Technology Australia website

Saliva is a clear liquid made by the salivary glands in your mouth. Saliva is mainly made up of water, but it plays a big part in keeping your mouth moist, helps you chew, taste and swallow, and prepare food for the stomach. The salivary glands can produce more than 2 litres of saliva per day.

People who have difficulty with swallowing often find that they have problems with saliva and mucous, which can build up in the mouth, and are difficult to swallow. It is worth discussing how to manage excess saliva with your speech pathologist.

The following may help reduce problems with saliva:

  • avoid foods such as dairy products, which seem to make the problem worse
  • try using head supports, collars or braces, which may help prevent the head dropping forward
  • try to keep your lips closed as this makes it more likely that saliva can be swallowed
  • if the automatic reflex of swallowing has gone, initiate regular conscious swallowing of saliva
  • obtaining a prescription for drugs that can dry the mouth and reduce the amount of saliva. 

There are some medications that help with drying the mouth. It is important to discuss what might be helpful for you with your doctor as there is a very fine balance between too much saliva and too little. There is a risk of developing “dry mouth”.

These basic and more technical aids may help:

  • tissues or absorbent paper for soaking up saliva, or cotton rolls (used by dentists) can also provide short-term relief from drooling
  • garments adapted to incorporate a discreet bib to protect clothing
  • using a syringe to remove excess saliva 
  • a suction unit – people with MND or their relatives can operate these, but you will need to ask advice about which is suitable, and initial instruction is required. 

Learn more about managing problems with saliva on the MND Association's Swallowing difficulties factsheet

Gastrostomy (also known as a PEG or RIG) enables you to have liquid food and fluids through a small permanent tube that passes directly into your stomach through your tummy.

Getting a feeding tube inserted can be hard to think about and a difficult decision, but there are many benefits. Some of the benefits include:

  • it may help maintain your weight
  • improved hydration and improved nutrition, which can help to reduce tiredness, hunger and constipation
  • it provides an easy way to take medication when swallowing is poor.

Some people with motor neurone disease can continue to take some foods and fluids by mouth after a gastrostomy. For those still able to take some foods and fluids by mouth, it is possible to have most food via the tube and save eating with the mouth for the food they enjoy most.

Learn more about considering gastrostomy

To get advice about gastrostomy, and to help with your decision about whether to have a feeding tube inserted, and when to have it, talk with your GP, neurologist, speech pathologist, dietitian, MND clinic or your state MND Association. You may find the MND decision support tool, Should I have gastrostomy for my nutrition and hydration in MND? a useful resource.

An important note:

It’s important to remember that leaving PEG insertion too late can increase the health risks associated with the medical procedure for its insertion, particularly if your breathing muscles are affected. Therefore if you think you might consider tube feeding as an option in the future, you may need to have the gastrostomy performed early before you really need one for nutritional reasons, but while your respiratory function is above a certain level.