What you should know
- If you are living with motor neurone disease (MND), it can be hard to manage nutrition and maintain weight. 1
- Maintaining weight and nutrition helps with wellbeing and overall health, and may assist in prolonging life.2
- Health professionals including speech pathologists and dietitians can help you make decisions, and work with you to find foods you enjoy, are safe to swallow and meet your nutrition needs.
- Tube feeding can help to minimise weight loss if chewing and swallowing gets too hard.3
What is a "healthy weight"?
In the general population, a healthy weight is supported by the following:
- eating a wide range of nutritious foods
- consuming fewer processed foods that are calorie dense and nutrient poor
- physical activity.4–5
For those living with MND, keeping weight on can be challenging. In general, MND is associated with a loss of weight.1 Weight loss may indicate more rapid progression of the disease5 and potentially shorter survival.2 Some people with MND lose a lot of weight before the onset of signs of MND.6 For others, more obvious weight loss happens towards the end of life
Why weight loss occurs
Weight loss in people living with MND can occur for a variety of reasons.
- MND affects the neurons needed for muscle function. Lack of muscle movement can lead to a loss of muscle mass or “muscle wasting”.
- MND can affect the muscles that control swallowing, making eating and drinking more difficult.2,8 This is also called dysphagia.
- Problems with eating and drinking can make consuming enough energy hard.9 This can lead to a loss of fat mass and limit the body’s ability to receive nutrition. 3, 10
- Loss of hand function can make it hard for people living with MND to eat and drink by themselves. They may rely on other people or specialised equipment to join in at meal times.
- Some studies show that people with MND might also lose their appetite, leading to weight loss.11
- Low mood or depression can also cause a loss of appetite.2
- Lack of awareness about the signs and symptoms of weight loss can also occur.
Signs of weight loss
People don’t always notice they are losing weight. Here are some common signs to look for:
- fatigue
- clothes feeling too big
- rings and watches becoming loose
- needing to do your belt up on a tighter notch
- dentures becoming loose in the mouth.
How to manage weight and nutrition when living with MND
Nutritional needs for keeping weight on differ for each person. See the section below for more about how your healthcare team can support you.
The following suggestions may also help:
- Choose high energy, high protein foods. For example, add some extra oil, butter, full fat milk, cream etc. to your meals.
- Eat smaller meals more often throughout the day. Plan to have more substantial meals when you are feeling most energised and alert.
- Try to preserve energy during meal preparation. For example, sit down while preparing meals, or buy pre-made meals from the supermarket.
- Allow yourself plenty of time to finish a meal.
Note: check with a speech pathologist to make sure any dietary additions or changes are at the right consistency for swallowing. See the web page Eating, Drinking and Swallowing for more information.
While it is tempting to introduce high calorie foods, including fast food, these diets might lack the nutrients you need to stay healthy. Working with your GP or a dietitian to develop a dietary strategy will give the best results.
The role of your healthcare team in maintaining weight
Your healthcare team can advise you on ways to maintain a healthy weight for you.12 Specifically, they can assist people living MND with:
- assessing weight and nutrition at different stages of MND
- creating personalised nutritional plans that meet your needs, and help you to adjust to life with MND
- give advice on how to safely chew and swallow
- suggesting equipment that may help you stay independent at mealtimes (e.g. easy grip cutlery, plate-guard, non-slip mats etc.)
- give advice on modifying foods and fluids, e.g. adjusting thickness, or suggesting high-calorie drinks and/or nutritional supplements, which recent evidence suggests may be beneficial for some people living with MND13
- linking you to psychological support if mood is impacting your appetite
- guiding advance care planning with regards to nutrition during end of life. 1, 3, 12
Your healthcare team can also work with you to help develop strategies for managing weight in a way that reduces stress and worry for carers, family and loved ones.
What about tube feeding?
Health professionals can advise on, and help with, tube feeding such as percutaneous endoscopic gastrostomy (PEG) or radiologically inserted gastrostomy (RIG). You can discuss this with your healthcare team early in your MND journey.
Tube feeding can help address problems with swallowing and chewing, particularly for those using long term ventilator support.1, 7, 12
You can read more about tube feeding here, or see the brief summary below:
- Tube feeding involves the use of short, permanent tubes that are placed into the stomach through the abdominal wall.
- Liquid feeds and fluids can be passed through the tube, directly into the stomach, bypassing the mouth and throat.
- These tubes can be placed early, when surgery is safe, so that they can be ready for use once or if needed.
- The tube is discrete and easily covered by clothing when you’re not using it.
- Everyone uses tube feeding differently. Some use it to support nutrition while still eating some food and drink by the mouth. Others use to for all their nutritional needs.
More information
Eating, Drinking and Swallowing – information about eating, drinking and swallowing for people living with MND, including food preparation and saliva management.
Maintaining Weight and Nutrition with MND – easy to read information about maintaining weight and nutrition, including tips.
Considering gastrostromy: PEG and RIG – fact sheet that gives an overview of tube feeding options for people living with MND
