Effective communication, computing and tech for people with motor neurone disease (MND)

MNDA provides specialist advcie and support to people livng with MND and their families and carersAbilityNet clients with motor neurone disease (MND) have several common questions around the best ways to communicate using technology. To mark MND Awareness Month – June - we've done our best to answer some FAQs using our own knowledge and that of the MND Association. Please contact us on 0300 180 0028 if you have any further questions. 

I struggle with using my voice. What is speech synthesis and text-to-speech technology?

You can convert typed text to automated speech using various computers / processors and different types of software. This technology can create sentences using synthetic voices to help you communicate. Some software programs may also allow you to use a synthetic version of your own voice, via a process called voice banking. It is important to note that voice banking recording has to take place prior to degradation of the voice.

Tip: Those who can use their speaking voices quite well can also spend a bit of time pre-programming words and phrases so they can use their own spoken messages through computers or other hardware. This is known as message banking.

What are the options for text-to-speech software?

Common options mentioned by users of the MND Association forums include: SpeakIt, Predictable, NaturalReader, Type and Speak and Speech Assistant AAC. In all cases the person with MND should be advised to contact their speech and language therapist (SLT) to discuss the best options before making any decision

How can someone with MND communicate electronically without having to type?

Something like the free app Simple R Whiteboard (a digital, touch sensitive whiteboard) for Android could be useful. It allows you to write on the screen with your finger and then email or save what you've written or drawn.

Markers, also for Android, is another option preferred by some, to draw pictures on a tablet.

I'm not used to computers, what can I do to communicate?

Most communication devices can be programmed to suit the ability of the user to operate a computer, as well as their communication needs. If it still doesn’t suit, the speech and language therapist (SLT) can help find other ways to communicate.

Another option would be to choose a dedicated communication aid, like a Lightwriter or an Allora, rather than using a program on a computer. Powered with rechargeable batteries, with a keyboard and display screen, these can be operated by an alternative method if the person with MND has limited hand movement. You type a sentence and press a button for the machine to speak it, and you can select from a range of voices. Frequently used words and phrases can be pre-set and text prediction can be used to speed up communication.

My fingers curl so writing or typing can be difficult, is there anything I can do?

People with MND sometimes recommend hand massages to help loosen fingers and, finger straighteners/ braces.

How can I have a private conversation in public?

Two people could plug their headsets in to a Y headphone device / headphone splitter and then use their typing/ text-to-speech programme to have a private conversation, hearing each other's voice through the headsets. We loved this quote from the MND Association Forums about this option: “I tried this out today in a coffee shop with my friend. Nobody knew we were communicating with each other. Must say it was fun.”

Lightwriters and Alloras have two screens and so you can communicate to deaf people or just keep you conversation private by only letting one person see it. You could use bluetooth headphones or ear pieces as well.

Can I use my eye movements to communicate?

Yes, there are several options available for this, which work on using eye movements to select characters or symbols, allowing users to construct words, sentences and phrases for communicating with other people. Some options recommended on the boards of the MND Association forums, include:

  • MegaBee - a portable communication aid that requires a second person to follow the eye movements of the person with MND.
  • Optikey – A free, open source assistive on-screen keyboard. This is designed to be used with a low cost eye-tracking device to bring keyboard control, mouse control and speech to people with motor and speech limitations.
  • Grid 2 or 3 software – AAC software that can be used with eye gaze cameras or with switches and offering various different screen layouts.

Tip: Some of the more sophisticated systems are very expensive, so it is essential to get advice from the SLT, equipment to trial, and arrange funding. The SLT may also be able to refer to a specialist service if appropriate.

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