The main symptom in patients with ALS is muscle weakness, which generally, at first at least, affects the hands or limbs and then spreads to other regions.
Eventually, patients develop dysarthria, which refers to a change in a speech that results from weakness of muscles that control speech.
What can you expect when you have dysarthria?
The presence of dysarthria causes patients to have difficulty producing clear sounds or articulate, draw enough breath to speak causing a reduction in volume of speech, control the quality of sound or what the voice sounds like, maintain natural rhythm of speech causing other people to misunderstand the person’s intended message, control the escape of air from the nose making the patient’s sound more nasal (sound strained or hoarse), making it harder to produce certain sounds such as m, n, and ng. Furthermore, as it will be hard to speak loudly, people have a hard time hearing the patient. Additionally, patients will start to slow down in the way they talk, which can cause the sound to be slightly slurred. The sound of the patient’s voice may change and speaking will start to take a lot of effort.
The rate at which dysarthria progresses in patients with ALS varies widely from person to person. However, everyone with ALS will experience some form of dysarthria.
While some patients will experience small changes and will still be understood, others will develop speech problems that make it hard to understand them.
How to improve your communication?
- Decrease background noises such as turning off the television or the radio.
- Be in the same room, and preferably face the person you are talking to as that makes communication easier. Avoid talking to someone if they are not in the same room.
- Speak slowly as that will help others understand you better.
- Try to make each sound bigger and more precise, which will help articulate your words.
- Inform others that it is okay to ask you to repeat what was said.
- If messages are not well-understood, then repeat or reword the message or just use the important words.
- Contact and work with a speech pathologist.
- Use short phrases to communicate and say only one or two words or syllables per breath.
- Over-articulate speech by extending the vowels and overstating the consonants.
- Schedule times of rest from speaking before any planned conversations or phone calls.
- Consider using an amplifier if your voice is very low.
How can speech pathologist help?
When the patient’s speech becomes very hard to understand, then it is important to contact a speech-language pathologist that can help teach you other ways and strategies of communication.
A speech pathologist is a professional that is trained to assess, treat, and manage the speech and swallowing difficulties that people with ALS experience. The primary goal of a speech pathologist is to help obtain and maintain the ability to communicate successfully, which will lead to an improvement in the quality of life.
Speech-language pathologists will do the following:
- Be an integral part of the multi-disciplinary team that takes care of you during your disease course.
- Develop approaches to handle any problems in speech and swallowing that are related to ALS or cognitive changes (i.e those related to reasoning and processing information) that develop due to ALS.
- Recommend devices that can help assist with communication
- Help recommend the appropriate foods that you are still able to chew and swallow so that you can maintain proper nutrition.
- Teach you that right exercises that can help improve communication as some exercises that are intended to strengthen weakening muscles may actually be counter-productive.
- Deliver continuing education to you and your family about current and future needs.
How can assistive devices help?
There are several types of assistive devices that can help patients with ALS communicate more clearly. Here are some of the more common devices:
- Palatal lift: a device that is similar to a retainer as it helps lifts the soft palate to stop the air from escaping out of the nose when talking.
- Amplifier: as patients with ALS start to speak at very low volumes, a personal amplifier that is used to increase vocal loudness can help patients be heard more easily. By being able to speak at lower volumes, the amplifier also helps reduce voice fatigue.
- TTY telephone relay system: this device is composed of a telephone attached to a keyboard so that words that are typed up on the keyboard can be read by a relay operator to the listener. The speech can be typed up either as a whole message or just a few words that the patient has trouble communicating.
- Low technology devices: often, simple pen and paper can help patients communicate and can replace speech in some circumstances.
- High technology electronic speech enhancers and communication devices such as computers with voice synthesizers are available for patients advanced ALS that have significant difficult talking.