You may lose weight due to the effects of the disease and muscles wasting. You may also lose weight if you eat less, which can happen if your appetite reduces or you feel very tired with MND.
A balanced diet is important for wellbeing, but you may need extra calories to maintain weight. This is known as ‘fortifying’ food.
Rather than adding unwanted volume to food, try adding calories with natural ingredients such as cream, butter and healthy oils. Ask your dietitian about other supplements.
Fluids can be harder to control with swallowing difficulties, and may cause coughing. Drinks, and foods such as soup or purees, may need thickening to help you swallow them more easily.
Ingredients like yoghurt, cream, cereals or cornflour can be used to thicken, but ask your speech and language therapist for advice about prescribed thickeners designed for this purpose.
Some foods may cause problems with swallowing difficulties, such as foods that are very chewy. Try to avoid anything crumbly, crunchy, powdery, flaky, sticky, stringy or with skins.
If your mobility is affected, you may be tempted to cut down on fluids to save trips to the toilet. However, you can become constipated if you don’t drink enough.
Try to drink about 1.2 litres of fluid a day (6 glasses of 200ml) or include more fluids in your meals. Use thickeners if needed (see above).
Continue enjoying wine, beer or spirits, as you wish.
Be careful of the amount of alcohol you drink if it leaves you feeling dehydrated. If your mobility or balance are affected by MND, alcohol may also increase your risk of falls.
Always check with your GP, neurologist or pharmacist if it’s safe to enjoy alcohol with any medications you use.
Over time, you may need to think about other ways to receive food and fluids if you have swallowing difficulties. A feeding tube can help, especially if you are at risk of food and drink getting into your airways (known as aspiration, which can cause chest infections).
A small operation inserts the tube through your abdominal wall into your stomach. You can use the tube to top up amounts at mealtimes or, if needed, receive all your nutrition and fluids this way.
It is your choice whether or not to have a tube fitted, but finding out the facts helps you make an informed and timely decision. Having a tube fitted before any significant weight loss is recommended.
See information sheet 7B – Tube feeding for details.
If you would like to see video content about tube feeding with MND, see the MyTube website at: https://mytube.mymnd.org.uk