Maintaining weight while living with MND

What you should know

• If you are living with motor neurone disease (MND), it can be hard to manage nutrition and maintain weight. ¹
• Good nutrition and maintaining weight 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

Introduction

For people living with MND, maintaining weight 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.⁷

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 it hard to consume enough energy (also referred to as kilojoules and calories).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 

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 maintaining weight 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 your 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 fast foods can provide energy, they may lack the variety of 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 weight in a way that works for you and your needs.¹² Specifically, they can assist people living with MND by:

• assessing your 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 
• giving 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.) 
• giving advice on modify foods and fluids, e.g. how adjusting thickness can help, or suggesting high energy 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 people 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