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. As the muscles of speech are usually impacted by motor neurone disease (MND) at some point, regular review and assessment of speech is important.

Speech, or the way people express their thoughts and emotions with sounds, is a complex process. Speech involves interactions between many nerves and muscles. The interactions allow vocal communication with other people.

The way people express themselves also makes up a large part of their identity and helps convey their beliefs and personality.

MND can significantly alter speech. MND can cause weakness in the tongue, lips, vocal cords and breathing muscles which can result in changes in the ability to speak.

Research suggests that around 80% of people living with MND are likely to have problems with the quality of their speech.

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.

However, there is a lot that can be done to support you to manage difficulties with your speech as they arise. Speech pathologists and occupational therapists can work together as part of your multidisciplinary team to provide you with great tips and strategies to support communication and to help you to maintain effective interaction with those around you.

Some people with MND experience changes to speech early in the progression of the disease, while for others it can happen much later on. As MND progresses, however, most people will find that the weakness in the muscles that control speech will gradually get worse. Speech changes usually include:

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

Often changes with speech are accompanied by changes with swallowing.

Learn more about changes in swallowing

As with most things, it helps by taking the approach of hoping for the best, but being proactive. Learning about the possibilities and planning ahead can help support a sense of being in control and with making informed decisions that work for you.

Early referral to a speech pathologist is a good thing. A speech pathologist can assess your speech and swallowing and provide advice and strategies to deal with what’s happening at the time, and/or talk through with you options for later down the track. Early referral is also important to provide the opportunity to discuss options for voice banking before you experience any significant changes to your speech. Voice and message banking are areas that are becoming more freely and easily available with advances in technology.

Finding what works for you can take time. The strategies listed below are some simple ways that could help support better communication when living with MND.

Take your time and prepare
  • take your time and try not to rush
  • if possible write down key or difficult words in the sentence to help supplement the spoken words
  • sit or stand face-to-face so the listener can watch lips, eyes, gestures
Reduce distractions
  • reduce background noise and interruptions
  • for some conversations, see if you can find rooms or spaces where you feel comfortable and there’s less likelihood of televisions, street noise, crowds and other noises that make talking hard
Find ways to work with other people
  • if you are the listener, try not to finish sentences if possible, simply wait for the person for MND to finish their sentence
  • if you feel comfortable, acknowledge your speech can be tricky to understand and try to make others feel comfortable and less stressed about possibly not understanding
  • establish gestures or signals for 'yes' and 'no'
  • listeners can ask questions which only need a 'yes/no' answer
Cards and notes

When speech becomes difficult to understand, others may assume deafness or intellectual impairment and either speak too loudly or too simply. Carrying a card that clearly states that you can hear and understand but not speak clearly can help when interacting with people that don’t know you, like at the shops or on public transport for example.

Taking a typed or written notes or a list of questions with you to the shops or doctors can help you have conversations. Your carer may be able to help you with this ahead of time if you are unable to write.

Speech is not the only form of communication that may be impacted by MND. Weakness of arm and hand muscles will also impact on a person's ability to use gestures to enhance communication and may also impact on their ability to use high and low-tech devices and strategies. An OT can work with a speech pathologist to problem solve and work out the best way to adapt and develop solutions.

Spending some time talking with a speech pathologist and occupational therapist as well as with your friends, family and carer early on can help you work out what communication strategies should work for you. It also gives you a chance to trial and set up a system that works for you.

As technology rapidly advances, there are many communication options becoming available to people living with MND. Talking with your speech pathologist and your occupational therapist (OT) can help provide 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.

Items used to aid communication that are easily available and do not rely on technology or special devices are referred to as low- tech. 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 eyes movements
  • call bell or personal alarm

Items such as special devices and apps, computers, tablets and software are referred to as high technology systems to support communication. Hi-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 are light weight and portable and can be loaded with various computer applications (apps) to support communication and home access/environmental control

Computer applications (software) is a fast growing area of technology with much promise, 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, can be used if your hand function has been impacted by MND and you find using a mouse or keyboard difficult. These eye tracking or eye gaze devices let you move your computer mouse and type on your keyboard using your eye movements.
  • voice Banking is the process of recording or your own voice which can be ‘digitalised’, then stored and used by your communication devices to sound like you.

Assistive Technology Australia outlines many of the types of the communication aids, phones, reading and writing aids available.