MND is a general term applying to progressive, degenerative disorders affecting the motor neurones. Motor neurones carry signals from the brain to the muscles. In people with motor neurone disease, the motor neurones deteriorate and can no longer carry these signals. This can weaken the muscles that control chewing and swallowing, and place people at risk of malnutrition and dehydration.

A gastrostomy tube is a feeding tube running from the outside of your abdomen into your stomach. It enables you to maintain your nutritional needs if you are having difficulty with chewing and swallowing food and drink. The tube allows you to be fed specialised liquid feed to ensure your nutrition and hydration needs are met. The most frequently used insertion technique is percutaneous endoscopic gastrostomy (PEG). This is performed by a Gastroenterologist. An alternative technique is percutaneous radiological insertion of gastrostomy (RIG). This is performed by a Radiologist. Your MND doctor or Gastroenterologist will advise you about the best gastrostomy procedure for your needs.

Having a gastrostomy does not stop you from eating and drinking. Many people are also able to eat and drink smaller amounts for enjoyment, in addition to their gastrostomy feed. Your Speech Pathologist and Dietitian can advise you about this. Safe swallowing techniques may allow you to eat and drink small amounts safely; however, it may not be enough for adequate nutrition and hydration. Discuss this with your Dietitian, Speech Pathologist and MND doctor. Read more from MND Australia

Gastrostomy should be discussed with your MND health professionals as soon as you notice you are having swallowing difficulties, you are losing weight unintentionally, you are consuming less food and fluids than you usually would, you are taking longer than expected to eat a meal, or you are having problems resulting from dehydration, such as constipation. Guidelines recommend early insertion of gastrostomy, to give the greatest benefit and to reduce the risk of complications. A gastrostomy is best inserted when lung capacity is strong (FVC greater than 50%). For some people, this will mean having the gastrostomy inserted before it is needed. If lung capacity is not strong, there may be greater risks of complications after the procedure. Talk to your MND health professionals about when might be a suitable time for you to have a gastrostomy.

Gastrostomy will not cure MND, or slow down or improve your MND symptoms. Research indicates that gastrostomy may extend the lives of people with MND by several months. However, how long it extends life varies greatly between individuals.

Your body needs adequate nutrition and hydration to function at its best. While your MND symptoms may not worsen, your ability to meet your nutritional requirements will become much harder without gastrostomy. This in turn can take a large toll on your body, which is already burdened by MND. People who are no longer able to eat or drink are given palliative care to ensure they remain comfortable as their life ends.

Some people may change their mind about using gastrostomy. If so, a gastrostomy tube can be easily removed. Removal requires another brief medical procedure, involving the same risks of medical complications as the insertion procedure. Talk to your medical team about removing your gastrostomy tube and withdrawing from artificial feeding and hydration.

The following issues may influence your decision. If you have any concerns, discuss them with your MND team: respiratory muscle weakness, advanced malnutrition, needing physical assistance, or memory problems.