MND Australia
MND Info Line 1800 777 175. 9am to 4.30pm Monday to Friday.

Speech & communication

Speech and communication are an important part of daily life. The way you express yourself makes up a large part of your identity. It helps convey your beliefs and personality. 

MND can cause weakness in the tongue, lips, vocal cords, and breathing muscles which can result in changes in the ability to speak. For this reason, regular review and assessment of speech is important.

The problems with speech associated with MND can be hard to deal with. Losing the ability to speak can lead to frustration, less time socialising and feelings of isolation and loss of control.

You’re not alone. Research suggests that around 80% of people living with MND are likely to have problems with the quality of their speech.

Thankfully, there is a lot that can be done to support you to manage problems with your speech if they arise. Speech pathologists and occupational therapists can work together to give you tips and strategies to support communication so you can interact with those around you.

Speech, or the way people express their thoughts and emotions with sounds, is a complex process that involves many nerves and muscles.

Some people with MND experience changes to speech early in the  disease. For others it can happen much later. For most people, weakness in the muscles that control speech gets worse as MND progresses.

Speech changes usually include:

  • unclear speech with slurring
  • hoarseness or a weak voice
  • lower volume 
  • for some, loss of the ability to speak altogether.

Often changes with speech come with changes to swallowing.

As with most things, it helps to hope for the best while being proactive. Planning ahead can give you a sense of being in control and assist with making informed decisions.

Early referral to a speech pathologist is a good thing. A speech pathologist can assess your speech and swallowing. They can give you advice and strategies to deal with what’s happening at the time. They can also talk through your options for later down the track.

Early referral also allows you to discuss options for voice banking before there are major changes to your speech. Voice and message banking are becoming more available with advances in technology.

Finding what works for you can take time.

Talking with your friends, family and carer early on can help you figure out what works for you. It also gives you a chance to trial different strategies until you find the best system for you.

As well as speech problems, weakness of arm and hand muscles can affect your ability to use gestures. This can impact your ability to use some high and low-tech devices. An occupational therapist (OT) can work with a speech pathologist to problem solve and find ways to adapt and develop solutions.

The strategies listed below can help support better communication.

Take your time and prepare
  • take your time and don’t rush
  • be prepared – write down key or difficult words
  • sit or stand face-to-face so the listener can watch lips, eyes, gestures
Reduce distractions
  • reduce background noise and interruptions
  • see if you can find quiet rooms or spaces where you feel comfortable
Find ways to work with other people
  • if you are the listener, try not to finish sentences – wait for the person talking to finish their sentence
  • if you feel comfortable, tell people your speech can be tricky to understand
  • use gestures or signals for 'yes' and 'no'
  • suggest listeners ask questions that only need a 'yes/no' answer
Cards and notes

If your speech is affected by MND, others may assume you are deaf or have an intellectual disability. They may speak too loudly or too simply.

  • Carry a card that states you can hear and understand. This can be helpful at places like the shops or on public transport when interacting with people that don’t know you.
  • Take a typed or written note or a list of questions with you to the shops or doctors. This can help you have conversations. Your carer may be able to help you with this ahead of time if you are unable to write.

As technology advances, there are more and more communication options available to people living with MND. Your speech pathologist and your occupational therapist (OT) can help give solutions for day-to-day communication.

MND Association advisors or support coordinators are also great sources of information. Some devices may be available for hire or loan through your local MND Association.

Low-tech devices 

Low-tech devices do not rely on technology to aid communication. They are generally easy to get. Low-tech communication devices include:

  • alphabet board – users point to letters on the board to spell words
  • communication chart – users point to words or pictures on a board to explain what they need
  • ETRAN boards/perspex eye-gaze frame – users select letters to spell words by using their eye movements
  • call bell or personal alarm.

High-tech devices

High-tech communication devices include:

  • laser head pointers to point to items on a communication board 
  • telephone typewriter (TTY) – users type a message that is read to the person you have called via the National Relay Service
  • special switches for computers, tablets and smart phones to support access if you have hand weakness
  • smart phones, iPads or tablets can be loaded with computer applications (apps) to support communication and home access/environmental control.

Computer applications (software) is a fast-growing area of technology and includes:

  • voice activation devices that can make calls, write and send text messages, turn lights off and on, play music, research information and so much more i.e. Google Home, Siri, Google Action Blocks
  • eye-tracking devices that can be used if your hand function has been impacted or using a mouse or keyboard is hard. These devices let you move your computer mouse and type on your keyboard using your eye movements.
  • voice banking, by recording or your own voice which is digitised, then stored and used by your communication devices to sound like you.