There are ways to manage swallowing and communication if it does become affected by MND. Your treating health professionals can provide guidance and support specific to your personal circumstances and there are also suggestions on the MND Connect website: Eating, Drinking & Swallowing with MND | MND Australia
If you have lost weight, are struggling to stay hydrated or to take medications, then tube feeding (also known as enteral feeding or a PEG) can help to maintain your weight and improve hydration. You can still eat and drink after having the tube fitted, if it is safe to do so, but the tube ensures you are getting enough calories and water. A gastrostomy is a medical procedure during which a short fixed tube is placed into the stomach through the abdominal wall. The procedure will need to be performed under local anaesthetic and takes around 30 minutes. The fitted tube can then be used for liquid feed and fluids.
This is a very individual decision and your doctor and allied health team can provide you with more information and support. The idea of a feeding tube can be quite daunting, especially if you do not know what they look like or what to expect. There is a website, myTube, developed by SITraN - the Sheffield Institute for Translational Neuroscience and supported by the British MND Association, that shows what life with a PEG can be like and how it will look and be used if you decide you'd like to have one fitted.
myTube (PEG)
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myTube supports people to make choices around nutrition support and feeding tubes and provides further information including videos of people with MND showing you what their PEG looks like and how it is used to manage their nutrition, medication and hydration. myTube (mymnd.org.uk)
MND Decision Tools
This is an Australian website developed to assist people with MND to make decisions for their care and quality of life, particularly when the decision is hard to make, or there is no clear answer. Tools for three topics - gastrostomy/PEG, predictive genetic testing and assisted ventilation (NIV) - have already been developed and are ready to use, with other topic areas to be developed in the future. Each tool explains the advantages and disadvantages related to the decision and guides you to consider your personal feelings about each choice. MND Patient Decision Support
For children
Printable stories and colouring pages on pump feeding and gastrostomy/PEG/tube feeding
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Cameron_Camel_pump-ANZ.pdf (tubefeeding.com.au) - free resource produced by Nutricia
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Billy_Bear_Button_gastrostomy-ANZ.pdf (tubefeeding.com.au) - free resource produced by Nutricia
- Awareness Critters on Etsy - Low cost colouring pages for children for awareness of PEG’s and other disability aids. Awareness Critters Tubie Bolus Coloring Page | Etsy
For more information and support on swallowing, speech, saliva and feeding tubes (PEG), visit:
- Eating, Drinking & Swallowing with MND | MND Australia
- Speech & Communication with MND | MND Australia | MND Australia
- Considering gastrostomy: PEG tube | MND Australia
