Speech & communication

About 80% of people living with MND will have changes to speech. Often changes with speech come with changes to swallowing.

If you are diagnosed with bulbar onset MND, or progressive bulbar palsy (PBP), changes to speech and swallowing muscles may be the first signs of MND.

Some early changes to speech you might notice include:

• Words sound slightly slurred. 
• People ask you to repeat yourself.
• You run out of breath more quickly.
• Talking is harder when you are tired.

If you notice changes in your speech, tell someone. There is a lot you can do to adjust the way you communicate, and plan ahead. Dealing with changes as they happen helps you stay confident in everyday conversations.

What you can do now to prepare: 

1. Prepare and plan: watch Preparing for changes in speech (video) and read the Preparing for changes in speech guide
2. Act early: talk to your State MND Association, GP, or speech pathologist.
3. Consider voice banking: see the Voice and message banking guide for more.
4. Express your wishes: Document important health, financial and personal messages so your choices can be respected. See the Planning ahead fact sheet for more.
5. Understand how others can help: See Information for carers and family on this page.
6. Apply for funding: see the Funding your communication system guide for more.
7. Support your mental health:  See the Mental health and wellbeing guide for more.
8. Try these tips: to support speech and communication.

MND affects the nerves and muscles used for speaking. This includes the lips, tongue, vocal cords, and muscles on the roof of your mouth (soft palate). Weakness in breathing muscles can also make speech harder.

Some changes you might notice when speech gets harder:

• It takes more effort or energy to speak. 
• Your voice is softer or harder to hear.
• People ask you to repeat yourself more often.
• It is harder for people to understand you on the phone.
• You are using writing, texting, or gestures to help others understand.
• You cough or get short of breath when speaking.

If you notice changes in your speech, tell your speech pathologist. There is a lot you can do to adjust the way you communicate, and plan ahead. Addressing changes as they happen helps you stay confident in everyday conversations.

What you can do now to adjust to changes: 

1. Know what you can do: watch When speech gets harder (video) and read the When speech gets harder guide.
2. Consider voice banking: see the Voice and message banking guide for more.
3. Express your wishes: Document important health, financial and personal messages so your choices can be respected. See the Planning ahead fact sheet for more.
4. Try communication tools and tech: See Communication tools and technology (AAC) on this page.
5. Understand how others can help: Download Carer guide: When speech gets harder or see Information for carers and family on this page.
6. Apply for funding: see the Funding your communication system guide for more.
7. Support your mental health:  See the Mental health and wellbeing guide for more.
8. Try these tips to support speech and communication.

For many people living with MND, speech can get harder over time. You may also find it gets harder to use your hands to control devices. 

Some changes you might notice when speech is limited, or not possible:

• You rely mostly on gestures, facial expressions, or yes/no signals.
• Muscle weakness may make pointing, typing, or writing harder.
• Conversations can take much longer or feel too tiring.
• You often switch to AAC or yes/no because speech is too hard.
• People who know you well are more likely to understand you than others.

These changes are hard to deal with. Your speech pathologist can advise you about your options. 

With the right mix of tools and support you can express your needs, choices, and feelings. You can follow your interests, take part in family life, and stay connected to the people and activities that matter most. 

What you can do now to stay connected without speech: 

1. Know what you can do: watch Staying connected without speech (video) and read the Staying connected without speech guide.
2. Stay involved in daily life: with a mix of Communication tools and technology (AAC).
3. Share your healthcare needs: with the My care needs form.
4. Express your wishes: Document important health, financial and personal messages so your choices can be respected. See the Planning ahead fact sheet for more.

5. Understand how others can help: Download Carer guide: Staying connected without speech or see Information for carers and family on this page. 

6. Apply for funding: see the Funding your communication system guide for more.
7. Support your mental health:  See the Mental health and wellbeing guide for more.
8. Try these tips to support speech and communication.

If you feel comfortable, tell people your speech can be tricky to understand. You can also try these tips to make communicating easier, or suggest them to others.

You don’t have to use all of these at once – try one or two and see what works for you.

Tips for you

• Slow down, use short phrases, and over-pronounce words.
• Turn off the TV, music or radio before talking.
• Plan important conversations for when you are less tired.
• Prepare ahead for appointments by writing or recording key points and questions.
• Use a notebook, phone or tablet to back up your speech.
• Add the ‘I have MND’ card to your phone or download and print.
• Take a breath before you start talking. 
• Sit upright when talking to give your lungs more space.

Watch this video for more tips on what to do, including communication tools and technology.

You can also visit the other sections on this page.

• Tips for carers, family and health professionals
• Preparing for changes in speech
• When speech gets harder
• Staying connected without speech
• Communication tools and technology (AAC)

Tips for carers, family and health professionals

Try these tips to support communication with a person with speech changes: 

• be patient, wait for the person to finish their sentence
• face the person when talking so they can see you and hear clearly
• if possible, choose somewhere quiet to talk
• repeat back what you heard to check you heard right
• ask questions that only need a 'yes/no' answer 
• support them to plan ahead, organise appointments and apply for funding
• suggest a different method e.g. pen and paper, communication board, device.

See Information for carers and family for more.

When speech gets harder, communication tools and technology can help you stay connected. 

This can be as simple as a pen and paper or tablet app, or as advanced as a speech-generating device that “talks” for you.

Communication tools and technology can help to:

• reduce frustration and fatigue
• use your own voice even as speech gets harder – see Voice and message banking for more
• make it easier to get your message across 
• share your needs and stay part of conversations – download the 'I have MND' wallet card or phone wallpaper
• express your needs in an emergency (‘I need help’, or ‘Please wait’) – see 'My care needs' form
• stay independent at home, in hospital, or in the community. 

Find out more:

• See Tips to support communication and speech on this page

• Download Communication tools and technology (AAC)

• Watch the demonstrations in this video.

Other useful guides and tools

• Voice and message banking: understand voice and message banking, know your options and get started.

• Building your communication system: find the right tools and technology for you, for now and later with support from a speech pathologist and occupational therapist.
• Funding your communication system: Information about funding options for your communication system including NDIS, My Aged Care and your MND Association. 
• PAS (partner-assisted scanning) and communication boards: Information about PAS (partner-assisted scanning), a starter pack communication boards and instructions on how to use them together. 
• 'I have MND’: Printable card to keep in your wallet, or save as a wallpaper on your phone. Lets people know that you have MND, but can hear and understand. You can also ask your MND Association to print and laminate for you.
• 'My care needs': This document introduces you and your needs, saving your energy and improving the care you receive. Save and share with family, your GP, and your MND team.

When speech changes with MND, carers play a big role in making conversations easier, calmer, and less tiring. 

What you can do now 

1. Prepare and plan: Watch these videos and download these guides.

2. Act early: Support the person living with MND to talk with their State MND Association, GP, or speech pathologist.

3. Support dignity and autonomy: Give support to help document important health, financial and personal messages so choices can be respected. See the Planning ahead fact sheet for more.

4. Apply for funding: see the Funding your communication system guide for more.

5. Support your mental health: Caring for a person living with MND can be rewarding, but can also be very hard. Remember your wellbeing matters too. See the Mental health and wellbeing guide for more.

6. Try these tips: to support communication with a person with speech changes.

Carer Guides: Speech and communication in MND

These downloadable guides give detailed information for carers supporting a person with changes in speech (dysarthria).

• When speech gets harder
• Staying connected without speech 
• Using simple communication tools 
• PAS (partner-assisted scanning) and communication boards
• Communicating at end of life

Topics include:

• Practical tips, advice and support

• Communication tools and technology options

• Who can help

• How to repair conversation breakdowns

• How to use PAS (partner assisted scanning)

• How to stay connected when speech gets harder

• How to talk to someone using eye-gaze

• Daily checklists and more