Eating, drinking & swallowing

Eating, drinking and swallowing involves many nerves and muscles. When these nerves and muscles become weaker, basic functions are harder to perform. Some of the functions affected are:

• opening and closing the mouth
• chewing food to make it softer and easier to digest
• 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 
• trouble swallowing (also called dysphagia)
• coughing or choking when eating
• dribbling saliva
• problems with chewing, and
• taking a long time to chew and swallow.

Being unable to eat can affect your physical health. You may lose weight, become malnourished or dehydrated.

Eating also plays a large part in our social lives. It is often a focus of social events and celebrations.

If you have trouble eating, you may feel like you’re missing out. You may not feel like catching up with others like you normally would.

Support is available. The right support can help you with problems with eating, drinking and swallowing. You can also come up with strategies to enjoy socialising and not missing out on time with others.

A speech pathologist helps with communication and swallowing.

A speech pathologist can:

• assess your swallowing ability
• give information about how to swallow
• advise on food consistency so food is easier to swallow
• tell you about communication aids and devices, and
• assist in making decisions about a feeding tube.

Dietitians give advice about healthy eating. A dietitian can help you with ways to include a variety of foods in your diet.

Eating a variety of foods means you are able to get enough calories, vitamins and minerals, as well as a balance of proteins, carbohydrates and fats.

A dietitian can:

• assess your nutrition needs 
• advise you about food choices to improve nutrition, minimise weight loss and keep up fluid intake, and
• assist in making decisions 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.

Adjusting food and drink consistency can make it easier to swallow. There are many tips and tricks on how to do this. Your speech pathologist can provide tailored advice and guidance for you.

The following suggestions may also be useful:

• puréed (vitamised or blended) foods slow down the flow and are usually easier to swallow
• eat from shallow spoons and take small mouthfuls
• sip drinks slowly – this reduces the risk of fluids going down your windpipe
• eat foods you like – taste stimulates the swallow reflex
• sit as straight as possible with your head upright
• use specialised eating utensils, such as spouted cups and syringes.

Some other resources that may help are:

Swallowing, eating and drinking, MND Association UK.

Adjusting to swallowing changes and nutritional management in ALS, ALS Association USA.

Weakness in arms and hands can make it harder to eat and drink, but modified utensils can help. Occupational therapists and speech pathologists can guide you towards what will work best for you.

Eating and drinking aids that can make a difference include:

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

Saliva is a clear liquid made by the salivary glands in your mouth. Saliva is mainly made up of water. Saliva does the following things:

• keeps your mouth moist
• helps you chew, taste and swallow
• prepares food for the stomach.

Many factors can cause problems with saliva. These can include the following:

• changes to the swallow function
• medications
• diet
• breathing problems
• positioning.

These factors can lead to a build-up of thin or thick saliva. The build-up can create distress and discomfort and cause problems with swallowing.

If you have saliva issues, talking with people in your healthcare team can help.

Neurologist – assesses your saliva issues. They can also refer you to the other members of your care team who can provide useful individualised strategies (see below). They may also prescribe medications to assist managing saliva.

Speech pathologist – assesses saliva issues and the potential impact of any swallowing changes. They can then suggest ways to clear saliva and reduce choking risk.

Physiotherapist – makes suggestions around positioning. They may also assess your cough and give you tips on how to clear saliva. Strategies may include a manual assisted cough or neck collars.

Occupational therapist – gives advice about how to position yourself in your bed or your chair to help control saliva in the mouth and throat.

Dietitian – reviews hydration and suggests ways to make sure you’re getting enough fluid.

Clinical psychologist – gives strategies to manage anxiety associated with saliva issues.

Gastrostomy (also known as a PEG or RIG) involves taking liquid food and fluids through a feeding tube. With PEG, a short tube is inserted surgically into your stomach through your tummy.

Getting a feeding tube inserted can be hard to think about. It is a difficult decision, but there are many benefits.

Some of the benefits include:

• it may help maintain your weight
• improved hydration and 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 MND can keep taking some foods and fluids by mouth after a gastrostomy. If this is the case for you, you can have most food via the tube and still eat the food you most enjoy by mouth.

Your healthcare team or your MND Association advisor can help you decide whether to have a feeding tube inserted, and when to have it.

To find out more about gastrostomy and whether it is right for you, see our fact sheet Considering gastrostromy: PEG & RIG

You may find an MND decision support tool helpful: Should I have gastrostomy for my nutrition and hydration in MND?