ALS and swallowing

Why swallowing can change

ALS affects the nerves that move muscles. That can include the muscles of the lips, tongue, jaw and throat.

Doctors call these the bulbar muscles. Changes in speech and swallowing are sometimes called bulbar symptoms.

Changes can happen over time

ALS is different for everyone. Swallowing can change over time, so checking again as things change is useful.

Learning about options early means you can make choices on your own terms.

What you might notice

• Thin drinks, like water, make you cough.
• Chewing tires your jaw before the meal is done.
• Food stays in your mouth or cheeks.
• Extra saliva, or thick saliva that is hard to clear.
• Meals take longer, and you eat less.
• Losing weight without trying.

What can help

These are options people use. Each has trade-offs, and you choose what fits you.

• Smaller bites and smaller sips.
• Swallowing two or three times for each mouthful.
• Changing head position. For some people, a chin tilted down helps. An SLP can check which position works for you.
• Thicker drinks are easier to control for some people. They can also feel less refreshing, so weigh both.
• Resting before meals, and eating smaller meals more often.
• A dietitian can help you get enough calories when meals take effort.

Saliva

When swallowing takes more effort, saliva can pool in the mouth. For some people it is thick and hard to clear instead.

There are medicines and devices for both. Ask your team what each involves, and weigh the side effects.

Planning ahead

Some people talk with their team about feeding tubes early, while choices are open. Others choose not to.

Learning the pros and cons early does not commit you to anything. It just means the choice stays yours.

Questions to ask your care team

• What does a swallow test show, and when is it worth doing?
• Which options fit what I notice now?
• What are the pros and cons of a feeding tube, and when do people usually talk about it?
• Who can help with saliva?
• How can I keep my weight steady?

When to get help

Get checked soon if you notice any of these. A doctor or SLP can look at what is going on.

You know your own body best. Bring what you notice to your care team, and decide together.

• Coughing or choking when you eat or drink.
• Food or pills that feel stuck.
• Losing weight without trying.
• Pneumonia or chest infections, especially if they come back.