This resource provides information on the importance of maintaining weight for the health of a person living with motor neuron disease.

What you should know

• Motor neurone disease (MND) can make it hard to manage nutrition and to maintain weight for health.
• MND is generally associated with a loss of weight, which may indicate more rapid progression of the disease and potentially shorter survival.
• People living with MND have different needs for maintaining weight for health, including the kinds of information they have access to, their nutritional needs, the assistance they may need with chewing and swallowing, and the support they may need to look after their mental health.
• Appropriate assessment and communication of weight maintenance needs are required early in the disease and should be regularly monitored.
• More research is needed, but advice and support for meal planning and nutrition, access to dieticians, advice to manage difficulties associated with chewing and swallowing, and regular monitoring and tube feeding helps with supporting weight management and minimising weight loss.
• Supporting people living with MND to participate in decision making for maintaining weight for health can help maintain their quality of life and management of nutritional needs.