2. Communication difficulties are called dysarthria
Communication difficulties are called dysarthria. In MND this is due to muscle weakness and incoordination, it is speech that is affected. This then affects communication. Language isn’t usually affected unless FTD present.

3. Muscle weakness and/or spasticity leads to a reduced range of movement in the tongue, lips, facial muscles, pharynx and larynx.

4. Reduced palatal elevation can lead to hypernasal voice quality.
Weakened breathing can lead to ‘breathy’ voice quality.

5. The emotional impact of being unable to communicate can be considerable. It is important to allow time to discuss these issues.
Loss of identity – inability to experience things as they used to, loss of what defines them as a person – previously they may have been ‘a runner’ or active in the community.
Low self esteem – a presumption by others that they are either drunk, deaf or intellectually impaired.
Fear – of what’s happening, and being unable to discuss this.
Sadness – that life’s expectations won’t be realised, and what will be left behind.
Loss of control – because they are misunderstood or their opinion is ignored or not sought.
Frustration – difficult or impossible to be understood; sometimes need time to express themselves which may not be available.
Anxiety – as fear.
Isolation – communication may be avoided.

6. Early referral to a speech and language therapist will help identify appropriate support and anticipate changes in need.

7. Similarly, early referral to an occupational therapist is key to maintaining quality of life for as long as possible.

8. There is a wide variety of augmentative and alternative communication equipment. Some is basic and widely available.

9. E-tran frame – used to spell out words by looking at each letter required.

10. Some AAC equipment does much more than provide a voice.

11. Lightwriter – converts text to speech.

12. EyeGaze – high tech option, more appropriate for longer periods of use.

13. Sit face to face and watch the person’s eyes, lips and gestures
Sit face to face and watch the person’s eyes, lips and gestures. Unspoken communication is important .
Make sure the environment is conducive to communicating.
The person may need quite a lot of time to say simple things – create a relaxed atmosphere and allow them the time they need.
Make sure the person is comfortable and is the focus of your attention.
Check back with the person on what you think they’ve said - be honest and admit when you don’t understand.

14. Voice banking is a process whereby a person with MND records themselves saying a set list of phrases, while they are still able to. The recording is then converted to a personal ‘synthetic’ voice, to be used on a tablet or other speech-generating communication device.
When the person is no longer able to use their own voice, they can use the synthetic voice to ‘speak’ for them. This voice can be used to vocalise any sentence entered into a speech-generating communication device. The voice created will not be a perfect replica of the person’s natural speech, but it will bear some resemblance.
Not everyone will be able to bank their voice. It is imperative that a person with MND who wishes to bank their voice does so as early as possible, ideally before bulbar symptoms develop, as sentences need to be pronounced well as they are recorded. The subject needs to be raised early to give people time to consider whether they want to bank their voice, to give time to complete the process, and for it to have the best chance of being successful.
People with MND who have cognitive change may have literacy and language problems, which may affect their ability to record their voice and/or use communication aids.
The MND Association can give further guidance and may be able to provide a limited amount of funding.

15. The first port of call for funding should always be the NHS, via the local speech and language therapy service.
In some circumstances the MND Association may be able to provide limited support.
If a person with MND chooses to fund their own AAC equipment, they should be made aware that their needs are likely to change.

16. Our Communication aids co-ordinator works with NHS providers and NHS England with the aim of improving the provision of communication aids for people with MND. He oversees equipment loan and financial support for AAC and voice banking.