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. The disease 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 with MND. You will be able to better 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:
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:
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:
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 ALS produced 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 pathologists 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:
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. Saliva is often referred to as ‘secretions’ – both terms are referring to the saliva in the mouth and ‘back of throat’ throat area (known as the oropharynx).
A number of factors can cause problems managing saliva. These can include changes to swallow function, medications, diet, breathing or positioning. These changes can lead to a build-up of thin or thick saliva and can lead to significant distress and discomfort.
Some people find that excess saliva and mucous can cause problems with swallowing. It is worth discussing how to manage excess saliva with your Speech Pathologist.
It is important to discuss saliva issues with people in your healthcare team as they may be able to provide useful strategies to help.
Neurologist – your neurologist can assess your secretion issues and refer you to the relevant members of your care team who can provide useful individualised strategies (see below). Sometimes prescription of medications that can assist in the management of secretions is also considered.
Speech Pathology – a speech pathologist can assess your secretion issues and the potential impact of any swallowing changes. They can then make recommendations that will assist in the clearance of saliva/secretions and reduce choking risk.
Physiotherapy – a physiotherapist can make recommendations around positioning. They may also assess your cough and provide suggestions to improve your ability to clear secretions. Strategies may include the use of manual assisted cough or neck collars.
Occupational Therapy – an occupational therapist can make recommendations to optimise your position in bed or your chair to assist the control of secretions in the mouth and throat.
Dietetics – a dietitian can review hydration and make recommendations to ensure that insufficient fluid intake is not worsening issues with thick secretions.
Clinical Psychology – a clinical psychologist can provide strategies to manage anxiety that may be exacerbating your secretion issues.
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:
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.
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 helpful, Should I have gastrostomy for my nutrition and hydration in MND?
An important note:
It’s important to remember that leaving PEG insertion too late can increase the health risks associated with having it inserted, particularly if your breathing muscles are weakened. 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 before you require help with breathing.