Motor neurone disease and communication

Also called MND and speech, ALS and communication, Amyotrophic lateral sclerosis

Most people with MND lose speech; the mind stays. Plan for it early, bank your voice while it's clear, and know that the AAC service should be involved from diagnosis.

What it is

Motor neurone disease is a progressive condition in which the nerves controlling muscles stop working, and the Health A-Z carries it as motor neurone disease. This entry is about communication, because most people with MND lose the ability to speak clearly and many lose speech altogether. Thinking, personality and understanding are largely spared, so a person may have everything to say and no way to say it.

The right approach is planning before need. Every part of the communication plan works better when it's set up while speech is still good: voice banking needs a clear voice, learning a device needs energy, and the person deserves to make the choices rather than have them made in a crisis.

Who it can help

People with MND from the day of diagnosis, whether or not speech is affected yet, and their families. Around a quarter of people start with bulbar symptoms, meaning speech and swallowing go first; for the rest, speech changes later, but it usually comes.

It isn't a guide to the wider disease. The message here is narrow: don't wait.

How it works

Speech changes in MND are dysarthria: a weak, slurring, quiet, nasal voice as the tongue, lips, palate and breath lose strength. It often worsens over months, and fatigue makes evenings harder than mornings.

Voice banking records several hundred sentences while speech is clear and builds a synthetic voice that sounds like you, for use on a device later. Message banking records specific phrases and jokes in your own real voice. Both are free or funded for people with MND in the UK and both are best done early; a bulbar presentation can close the window in weeks.

Devices follow the disease. Early on, a phone with text-to-speech. Then a tablet or dedicated device with word prediction, and as hand strength goes, switch access or eye gaze, which most people with MND can use to the end. The regional NHS AAC service assesses and provides; the MND Association funds voice banking and loans equipment for the gaps.

Getting started

Ask the MND care centre or the neurologist for an immediate speech and language therapy referral and for the specialised AAC service to be involved now, not when speech goes. Start voice banking this month; the MND Association explains how and pays for it.

Record message banking phrases on a phone this week: names, pet phrases, the way you say "I love you", the joke you always tell. Nobody regrets doing it.

Put a text-to-speech app on your phone and use it once a day now, so that when you need it the habit is there. Talk with family about how you'll want to communicate and what matters most to keep.

Where to get help

The MND Association runs a helpline, funds voice banking, loans communication aids and has care centres across England, Wales and Northern Ireland. Communication Matters explains the NHS AAC service map. Suppliers such as Smartbox and Tobii Dynavox make the eye gaze devices most people end up using. The NHS route is neurology, the MND care team and speech and language therapy; the RCSLT describes it.