Motor Neurone Disease (MND)

Speech and communication with MND

Difficulty in speaking clearly was an early symptom that some people experienced (see 'First symptoms'). Sometimes others assumed they were drunk because their speech sounded slurred. Other people we talked to developed speech difficulties later on. Not everyone with MND will develop speech problems - the MND Association provides information about symptoms and types of MND.

The loss of speech could be frightening and hard to adjust to. This was both in practical terms, for example not being able to make people understand what you wanted (especially during hospital stays), and in emotional terms, for example losing the ability to express your personality, make jokes and take part in normal conversation. Being good with words and speaking had been an important part of many people's identity, either at work or in their social life. 

Advances in technology have given people many opportunities to communicate in different ways, including texting, email, internet forums and voice software. These did not suit everyone - people with hand and arm weakness sometimes found it difficult to use a mouse or keyboard, for example, although computer adaptations are available to help people with limited hand use. Those who were not used to typing could find it too slow to use a computer. Some preferred to use handwriting, and some used letter frames, picture charts or sign language. In many cases, people used a combination of strategies. One person also used a battery-powered voice amplifier.

Some people were very positive about Lightwriters (small hand-held computers with a keyboard, display screen and voice software), but others found them hard to use. One man preferred a 'Say-it! SAM' device with a touch screen and stylus. Several people talked about making jokes and making people laugh with their voice software.

Some people were using more elaborate computer voice software programmes, some of which can be used by people who cannot use their hands to type. One woman was using a programme called EZ keys with a chin switch. Another had downloaded NextUp software from the internet. Whilst one liked the American accent, the other had chosen an English accent. Both felt liberated by the software to express things as they wanted.

However, various other technological developments were suggested to help people with communication difficulties.

Some people had problems during hospital stays, especially in units where staff were not used to caring for people with communication difficulties. Even in specialist neurological wards the experience was not always good. Several carers had been glad to be there to help their relative communicate, but had sometimes found it difficult to get staff to listen and allow them to help. (The MND Association is keen to hear from anyone experiencing such problems. When someone is admitted to hospital, an MND regional care development adviser can contact the ward with the family's permission, and offer advice and support to staff not used to caring for someone with MND).

At the same time, many felt it was important for others to remember to involve people in conversation, especially in social situations but also in hospital stays and appointments. Comments included:

“If you meet somebody in a wheelchair, talk to the person and not the person pushing it.”

“You are 'compos mentis', you do understand and you are normal. All that's wrong is your voice.”

“You have to be very assertive, to make sure that he is still involved, because people do tend to want to speak to me rather than to speak to Mike.”

In addition to people who had speech problems, a few people with weakness in their arms or hands had looked at technological solutions to help them communicate. In particular, voice recognition software can make it much easier for people to continue using a computer by dictating. The software then converts the sound of the voice to text on the computer. Most found it fairly easy to use, even while using a ventilator mask, but one man said it had trouble recognising his wife's Irish accent. People used it for emails, taking part in internet forums and creative writing, and one man was using it to continue taking the minutes for his political association. Another explained how he used it to give talks and write for newsletters. 

The MND Association website provides a range of helpful information resources, including the following information sheets, 7C: Speech and communication support and 12D: Voice banking.
 
They also offer a Communication Aids Service which can guide people on ways to access suitable aids and provides a limited range of communication aids on loan. See their Getting help area on their website.

The charity Connect offers advice, training and resources to help people with speech difficulties to communicate. Their main focus is people whose communication problems are caused by stroke, but some of their resources are also useful for people living with other conditions.

Last reviewed August 2017.
​Last updated
August 2017.

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