A guide for patients and families
How to communicate with ALS and keep your voice
ALS (amyotrophic lateral sclerosis, also called MND) can change speech over time. There are ways to prepare: save your own voice while it is still strong, and record phrases you want to say with it. There are also many ways to keep communicating as things change. This guide summarizes the options. Every decision is made with the healthcare team and the speech-language pathologist (also called a speech therapist).
How speech can change with ALS
ALS gradually weakens the muscles. When it affects the muscles of the face, tongue and throat, speech can become slurred, quieter, or be lost.
More than 8 in 10 people with ALS have changes in their speech. For some it is one of the first signs; for others it comes later.
Symptoms are different for each person, and so is how quickly they progress. That's why the healthcare team reviews communication regularly.
Why it helps to start early
To save your voice, it helps to record it while it still sounds strong. Professional guidelines recommend discussing it as early as possible after diagnosis. Ideally, before the voice changes.
Starting early gives you more time to do it calmly, while your voice is at its best. If your voice has already changed, there are still options: sometimes existing recordings of your voice can be used. The speech-language pathologist can guide you.
Two ways to keep your voice
They can be discussed together with the healthcare team. Some tools combine both.
- Saving your own voiceYou record a list of phrases out loud. Those recordings are used to create a synthetic voice that sounds like you. Later, that voice can say any word or sentence you type.
- Recording your phrases and messagesYou record, in your natural voice, phrases you say often, like "Hello," "My name is…" or "I love you." You can also record sounds that are truly yours: your laugh, how you call your pet, or a song. They are kept just as they are, with your own tone.
Communicating day to day, as things change
Communication with ALS is always possible. What changes is the way. Often several are used, depending on the moment and the place.
- WritingFor some people, pen and paper or a whiteboard is the quickest option.
- Yes and noAgree on a clear way to say yes and no that the whole family understands.
- BoardsBoards with letters, words or pictures to point at.
- A phone or tablet that speaksYou type or tap a phrase and the device says it out loud. It helps to start using them little by little, so the change isn't sudden.
- Other access methodsWhen moving the hands becomes hard, there are other ways to control a device, for example with the head or with the eyes. The healthcare team can advise on what fits each stage.
Tips for family
- One yes and one no for everyoneAlways use the same signal for yes and for no, and make sure everyone knows it.
- A way to callAgree on how they can get your attention, for example with a portable doorbell they keep at hand.
- A backup planAlways keep something simple at hand, like a letter board or a notepad, in case technology fails.
- Learn togetherAsk the healthcare team to teach you, too, how to use the communication tools.
Where Tocavox helps
Tocavox is one more support. You tap a phrase and your phone says it out loud, in a natural voice. It is a social project, free and ad-free.
To save your voice, with Tocavox you can make a quick copy now by recording about 2 minutes. For higher quality, the guided recorder at tocavox.com/grabar walks you through recording about 1 hour. The audio stays only on your own device, and it can later be used to create a professional voice. It's a free option that the person or their family can set up on their own. It can be used alongside other services and the guidance of the healthcare team.
An honest limit: Tocavox is used by tapping the screen. When moving the hands is no longer possible, other access methods are needed, and the healthcare team can advise on them.
Frequently asked questions
How does ALS affect speech?
When ALS weakens the muscles of the face, tongue and throat, speech can become slurred, quieter, or be lost. More than 8 in 10 people with ALS have speech changes, and each person experiences them differently.
When should I save my voice if I have ALS?
As early as possible after diagnosis, ideally while your voice still sounds strong. It helps to talk about it early with the speech-language pathologist and the healthcare team.
What does recording phrases in your own voice mean?
It means recording, in your natural voice, phrases you say often, like "I love you" or "My name is…", and sounds of your own, like your laugh. Later, other people can hear them in your familiar voice.
How does a person with ALS communicate when they can no longer speak?
There are many ways: writing, yes-and-no signals, boards with letters or pictures, and phones or tablets that speak. When moving the hands becomes hard, there are access methods using the head or the eyes. The healthcare team advises at each stage.
Can you save your voice if it has already changed?
Sometimes, yes. Existing recordings of your voice can be used. The speech-language pathologist can help you see which option fits.
Other guides
Sources
- MND Association · AAC pathway for Motor Neurone Disease
- NICE NG42 · Motor neurone disease: assessment and management (Communication)
- NHS · Motor neurone disease: symptoms
- NHS · Motor neurone disease: treatment
- Junta de Andalucía · Ayudas técnicas a la comunicación en la ELA
- Technology and Disability (2022) · Voice banking for individuals living with MND: a service review
- Ministério da Saúde · Esclerose Lateral Amiotrófica (ELA)
This guide is for information only and does not replace care from your doctor or speech-language pathologist. · Updated October 11, 2026