Like so many things with MND, it can be difficult to think about your ability to swallow being affected as the disease progresses. No-one wants to have to imagine their body weakening over time.
Some people with MND, however, will experience problems with eating, drinking and swallowing. This is because MND can affect the motor neurones that supply the muscles in the mouth and throat, and stop them working properly.
It can help to have some knowledge in advance about what might happen with eating, drinking and swallowing to support you to think about and plan for what you could do to ensure you remain well-nourished and hydrated, should this happen to you.
Both a speech pathologist and dietitian can provide important support and guidance for eating, drinking and swallowing.
A speech pathologist helps in the management of communication and swallowing. A speech pathologist can:
Dietitians provide healthy eating advice. A dietitian can help you to include a variety of foods in your diet, so that you consume enough calories, vitamins and minerals, and a balance of proteins, carbohydrates and fats.
A dietitian can:
Your MND Association advisor or MND Support Coordinator can help you find your local dietitian or speech pathologist.
There are many tips and tricks around food and drink consistency that will make them easier to swallow. Your speech pathologist can provide tailored advice and guidance for you.
Some other resources that may help are;
Eating and drinking with motor neurone disease (MND) produced by the motor neurone disease association of England, Wales and Northern Ireland.
Adjusting to swallowing changes and nutritional management in ALSproduced by the ALS Association in the United States of America.
Having the right tool can certainly make things easier, and this applies to the utensils for supporting ease of eating, particularly with weakened arms and hands.
Occupational therapists and speech pathologist can offer you guidance about what will work best for you.
When it comes to meal time, the eating and drinking aids that can make a big difference include:
Examples of equipment that is available to assist with eating and drinking is available on the Assistive Technology Australia website
Saliva is a clear liquid made by the salivary glands in your mouth. Saliva is mainly made up of water, but it plays a big part in keeping your mouth moist, helps you chew, taste and swallow, and prepare food for the stomach. The salivary glands can produce more than 2 litres of saliva per day.
People who have difficulty with swallowing often find that they have problems with saliva and mucous, which can build up in the mouth, and are difficult to swallow. It is worth discussing how to manage excess saliva with your speech pathologist.
The following may help reduce problems with saliva:
There are some medications that help with drying the mouth. It is important to discuss what might be helpful for you with your doctor as there is a very fine balance between too much saliva and too little. There is a risk of developing “dry mouth”.
These basic and more technical aids may help:
Learn more about managing problems with saliva on the MND Association's Swallowing difficulties factsheet
Gastrostomy (also known as a PEG or RIG) enables you to have liquid food and fluids through a small permanent tube that passes directly into your stomach through your tummy.
Getting a feeding tube inserted can be hard to think about and a difficult decision, but there are many benefits. Some of the benefits include:
Some people with motor neurone disease can continue to take some foods and fluids by mouth after a gastrostomy. For those still able to take some foods and fluids by mouth, it is possible to have most food via the tube and save eating with the mouth for the food they enjoy most.
To get advice about gastrostomy, and to help with your decision about whether to have a feeding tube inserted, and when to have it, talk with your GP, neurologist, speech pathologist, dietitian, MND clinic or your state MND Association. You may find the MND decision support tool, Should I have gastrostomy for my nutrition and hydration in MND? a useful resource.
It’s important to remember that leaving PEG insertion too late can increase the health risks associated with the medical procedure for its insertion, particularly if your breathing muscles are affected. Therefore if you think you might consider tube feeding as an option in the future, you may need to have the gastrostomy performed early before you really need one for nutritional reasons, but while your respiratory function is above a certain level.