Maintaining weight and nutrition with MND

There are many reasons why people living with MND find it hard to maintain their nutrition and keep weight on. These include:

• Problems with chewing and swallowing. As nerves and muscles weaken, it can become harder to eat and drink. Some people may start to feel embarrassed to eat or drink in front of others.
• Weakness in the hand or arm muscles. This can make it harder to use cutlery and feed yourself.
• Reduced appetite. Many people living with MND lose the desire to eat or drink. There are a few things that can impact on appetite, such as:
  • being less active
  • fatigue
  • constipation
  • low mood or depression
  • less enjoyment in eating and drinking.

Your nutrition needs may change over time. Being proactive about these changes can help.

Talk to your healthcare team about any issues or concerns you have. Let them know your likes and dislikes. The earlier you do this, the better. They can provide support and education to help you choose foods and drinks that:

• best meet your needs
• ensure you’re getting the right amount of food and fluid
• help you feel more comfortable while eating and drinking. 

A dietitian, occupational therapist and speech pathologist all play a role in supporting good nutrition. They can help with:

• a meal plan that works for you
• learning about what foods and drinks you need to stay nourished and to maintain weight
• learning how to prepare foods and drinks that are easier to swallow
• modified or lightweight cutlery, kitchen utensils, and mugs
• ensuring you are seated in the best position possible whilst eating and drinking
• keeping an eye on your weight and helping if you can’t weigh yourself
• advising you about nutritional supplements for extra calories
• talking with you about feeding tubes and whether they can help you.

It can be hard to stay active with MND. Exercises that have been designed especially for you can help. Doing the right exercises under the guidance of experts can help to maintain your strength, mobility, and overall wellbeing for longer.

Watch a short video about exercising with MND

If swallowing becomes too tiring or or too hard, you may need to think about other ways to get the nutrition and fluids you need.

A feeding tube, or gastrostomy, may be an option. This is also called PEG or RIG.

Most people living with MND don’t like to think about feeding tubes. But a feeding tube does have benefits. It can help you maintain your weight, and stay nourished and hydrated. This may improve your quality of life. In some cases it may also improve length of life.

Feeding tubes are discrete and can be covered by clothing. You can still eat through the mouth if you have a feeding tube.

If swallowing is still safe and comfortable for you, you can have most food and medication via the tube and still eat more enjoyable food by mouth. 

Learn more in our Factsheet: Considering gastrostomy: PEG & RIG