80% of people with MND will experience a change in their voice. Their speech may be slurred and/or quiet and some will have a complete loss of speech. The inability to communicate is considered by many with MND to be the most difficult thing about the condition to come to terms with. The loss of this function can lead to:

  • isolation due to communication being inadequate or avoided
  • frustration
  • low self-esteem as others may presume they are intellectually impaired
  • and a loss of control – because they are misunderstood or their opinion is ignored or not sought.

It is important to make an early referral to a speech and language therapist (SLT) who will examine the patient’s range of movement in their lips, tongue and palate and give advice on strategies for communication.

The SLT can also arrange for assessment and provision of Augmentative and Alternative Communication (AAC) – aids which assist communication. These range from straight forward techniques to high tech equipment.

Low-tech possibilities include:

  • eye-pointing frames or a word/message chart, where useful or frequently used words or phrases can be pointed at by the person with MND or the listener
  • an alphabet chart, where the person with MND or the listener can point to letters to spell out words

High-tech possibilities include:

  • portable electronic communication aids with a keyboard which produce an electronic voice
  • computers or tablet devices.

Support you can give:

  • find out how the person with MND prefers to communicate and any equipment they like to use
  • make sure any necessary communication aid is available and the person with MND is in the best position to access it
  • have a pen and paper handy so that the person, if they are able, can write down any appropriate words
  • sit face to face and watch the person’s eyes, lips and gestures
  • use hand gestures to assist with your own speech where suitable, for example using the ‘thumbs up’ sign to mean ‘good’ or ‘yes’
  • allow time and create a relaxed atmosphere
  • encourage the person with MND to slow down and over-emphasise words to help clarity
  • check back with the person on what you think has been said and admit when you don’t understand
  • find out whether the person uses a simple code for ‘yes’ and ‘no’

Try not to:

  • alter the rate or sound of your speech, unless the person with MND has asked you to, or a speech and language therapist has recommended it
  • finish the sentences of the person with MND, unless they ask you to, and avoid interrupting them
  • use family members or carers as a translator for the person with MND, unless it is clear that this is what the person with MND wants
  • ask simple questions that can be answered with yes, no or a single word

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