Motor Neurone Disease and Communication Difficulties

Motor neurone disease is a progressive disease that causes muscle weakness and stiffness throughout the body.  It is very common to experience difficulties with speech as muscles in the head and neck become weaker. It is important to be aware of the signs and symptoms of speech difficulties so you can alert your Speech and Language Therapist.

Common Speech Difficulties in MND

Initially, you may notice a slight slurring of speech, possibly in the evenings or when you are particularly tired.   This is because the tongue, lips and jaw are weak or stiff.

Your voice may sound different, possibly quieter, deeper or ‘rougher’.

It will not be helpful to do exercises to strengthen muscles – this is likely to make them more tired. It can be helpful to do the following:

  • Save energy by speaking face to face with people – not from room to room. Don’t try to talk over background noise, e.g. the TV or radio; find somewhere quiet if possible
  • Make the most of your best times of day to speak to friends/family or make phone calls.
  • Pace yourself by planning frequent rest days/times
  • Introduce the topic you are going to talk about so that your listener is more ‘tuned in’.
  • Watch your listener – check that they have understood what you are saying
  • If you find people asking you to repeat yourself:
    • try slowing down speech, pausing briefly between words.  Be especially careful with long words e.g. encyclopaedia.  Break them down into syllables: en-cy-clo-pae-di-a
    • try exaggerating your mouth movements for speech – as though you are speaking to someone through a pane of glass
    • if you are saying an unusual word, for example a name of someone your listener doesn’t know, you can try saying the letters of the word to spell it out
    • think of another way to say the same thing e.g. instead of ‘can I have another cup of tea?’ try tea please

If you find that speaking becomes too difficult ask your Speech and Language Therapist about Augmentative Alternative Communication (AAC). These devices can be both high and low tech and are useful tool to aid communication or they can be used for total communication. Some examples of AAC are communication books, alphabet charts, electronic tablets with communication software i.e. Predictable/Grid 3 player. If using your hands becomes difficult many of the electronic devices can have an alternate way to access them i.e. via eye gaze.

It may also be a good idea to consider voice banking whilst your voice is clear and strong. This means if you should need to use high tech AAC the voice you would hear out of the device would be yours.