One of the common symptoms of ALS is a gradual weakening and loss of control of the muscles in the mouth and throat. These muscles are known as “bulbar muscles,” and some of the “bulbar symptoms” of ALS include difficulty speaking or swallowing. For ALS patients who experience these symptoms (and the caretakers who assist them), below are some tips on how to manage speaking and swallowing with ALS.
ALS can make it difficult to talk clearly, requiring extra effort by both the speaker and the listener. However, there are many things that both people can do to make communication easier.
For the person with ALS:
- Give speaking your full attention. Don’t try to eat or drink at the same time.
- Speak slowly and carefully. Pronounce all the syllables in each word.
- Repeat words if necessary. If that doesn’t work, spell them out.
- Be brief; don’t add a lot of unnecessary words.
- Many speakers have a tendency to trail off at the end of words or the end of sentences. So, try to emphasize the ending sounds of each word.
- Taking a breath every few words will allow you to speak louder, making it easier to hear.
- Communication involves more than just speech, so use gestures and facial expressions to help convey what you mean.
- If a particular word is difficult to say or to understand, try substituting a different word or phrase. For example, if “book” is hard to say, substitute the name of the book or simply “thing you read.”
- It may be helpful to say (or write down) what the main topic of discussion is at the very beginning of the conversation. Use a single keyword, like “lunch” or “medicine.” That way, listeners will know the overall theme of what you are talking about, and be better able to follow along.
- Some listeners may pretend to understand what you have said, even when they have not. If you think the listener didn’t hear you correctly, you can ask them to repeat back what you said.
- ALS is progressive, so speaking will continue to get more difficult over time. Because of this, some ALS patients choose to plan ahead by recording their own voices while they can still speak clearly. They build up a “bank” of recorded words and phrases, which can later be programmed into an electronic device. This allows them to communicate using their own voice rather than a computer-generated one.
When speaking becomes too difficult, there are many tools and devices available that can help you communicate clearly. These range from low-tech alphabet boards to high-tech devices with speech-generating software. Most ALS patients with bulbar symptoms will go through a variety of communication aids as their needs and abilities change. A speech therapist can help you determine what techniques or tools will work best for you.
In any conversation, the listener’s role is just as important as the speaker’s role. When conversing with an ALS patient who has bulbar symptoms, there are several things you can do to help:
- Give the speaker your full attention. Get rid of any unnecessary background noise, and focus your eyes on the speaker so you can see any nonverbal cues.
- Check your hearing. If you have hearing loss, use a hearing aid or amplifier.
- If you do not understand something that was said, ask the person to repeat it or spell it out. It may help for you to repeat what you did hear, so they can fill in the blanks: “You said you want to go somewhere, but I didn’t hear where.”
- Practice makes perfect. If you are the caregiver, or a close friend or family member who speaks with the person regularly, you will probably be better at understanding what they say than a stranger would be. So you may be able to serve as a translator when the ALS patient is talking with someone new.
The act of swallowing involves a number of muscles, including the tongue, lips, jaw, and throat. Without all of the muscles working together in harmony, swallowing becomes difficult. Food or liquid could end up “going down the wrong pipe” into the respiratory system, causing choking or other breathing difficulties.
There are a number of things that people with ALS can do to manage swallowing difficulties and maintain better overall health.
- Take smaller bites of food and smaller sips of liquids.
- Swallow two or three times with each mouthful to make sure all food is cleared from your throat.
- Changing the position of the head can help you swallow safely. For some ALS patients, tilting the chin downwards helps prevent food from going down the windpipe; for others, tilting the head backward works better. Speech pathologists can recommend the best head positions for each patient.
- When eating dry foods, moistening the food with sauce or gravy can help keep food pieces from getting stuck. Taking a sip of liquid between each bite can also help.
- ALS patients may find it difficult to properly swallow foods that are a mix of solids and liquids, such as crunchy cereal with milk, or soup with chunks of meat or vegetables. Instead, substitute foods with a single consistency, such as oatmeal or thick cream soups.
- If chewing and swallowing any solid food becomes too difficult, you may need to switch to pureed food, or naturally soft foods like mashed potatoes, canned fruit, or pudding.
- When drinking, thicker liquids are easier to control and swallow than thin liquids. For example, you may want to switch from milk to milkshakes, or from fruit juice to fruit nectar. There are also thickeners you can add to any beverage to make it easier to swallow.
- If swallowing saliva becomes a problem, there are medicines available that reduce the amount of saliva produced by the body. Suction machines can also be used to dispose of excess saliva, so that it does not have to be swallowed.
Eventually, swallowing enough food and drink to stay healthy may become impossible or impractical. When this happens, a feeding tube can be used to ensure you get the nutrition you need. You can learn more about ALS nutrition and feeding tubes here.