Communication and ALS

People often use more than one method.

Speech might work well for short conversations but become tiring later in the day. Writing might be quickest when one word is difficult to understand. A switch might be easier than touch for longer periods.

The aim is not to move from one system to another as quickly as possible.

Keep using whatever makes communication easiest.

Speech often changes gradually.

Someone who knows you well may still understand something that another person cannot. Context helps too: a familiar sound, expression or attempt at a word may be enough when both people already know what is being discussed.

Keep speaking for as long as speaking is useful to you. When it becomes difficult or tiring, another method can fill the gap.

If writing is comfortable, writing may be the quickest answer. Pen and paper counts. So does a simple writing tablet.

Typing on a phone, tablet or computer can work too. Many devices can speak typed text aloud, and communication apps can do the same.

You do not have to stop speaking because you start using one of these. You can move between speech, writing and a communication device depending on what is easiest at that moment.

Difficulty using your hands does not mean you can no longer use a communication device.

You may still have one movement that is easy and reliable: a finger movement, for example, or another movement that can activate a switch.

A switch does one simple thing: it sends a signal when you activate it.

With scanning, the communication system moves through the available choices for you. When it reaches the choice you want, you activate the switch.

One reliable movement can therefore be enough to choose words, spell, use numbers and control a much larger communication board.

You do not need specialist equipment just to see how scanning works. A keyboard key can act as a switch, so it is possible to try the idea before buying anything.

If switch access becomes an important way of communicating, the movement you use and the position of the switch matter. The best setup is individual, and a speech/AAC or assistive-technology specialist can help find something comfortable and reliable.

A switch is not the only alternative to touching a screen.

Use the easiest method the person has available. If they can tell you clearly, let them tell you. If they can write something quickly, there is no reason to make them work through a communication board.

Communication methods should reduce effort, not add to it.

Context and guessing can sometimes help. Someone familiar may recognise a sound, facial expression or attempt at a word immediately.

But do not keep guessing indefinitely. If several guesses have failed, change method.

When using yes/no questions:

A yes or no signal might be a blink, an eye movement, a facial movement, a sound or another movement.

If you understood most of what was said, repeat the part you understood rather than making the person start again.

And when the possibilities become too broad to guess, move to writing, a communication board or spelling.

The method someone normally uses will not always be available.

A device may be charging. A switch may be badly positioned. Someone helping for the first time may not know the usual signals.

Having one or two simple backups can make a big difference.

Sometimes the next communication method is obvious. Sometimes it is not.

A speech-language/AAC or assistive-technology specialist can help work out what fits the person’s speech, movement and everyday needs.

They can help with things such as:

You do not have to wait until communication has become very difficult to ask.

What is available, who provides it and how it is funded varies by country. An ALS/MND organisation, ALS clinic or local disability service can help you find out what exists where you live.

Find ALS organisations