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

Living with MND during the COVID-19 pandemic

While COVID-19, or coronavirus, is no longer a public health emergency, it continues to impact the community.

People living with MND often have problems with swallowing, breathing and coughing due to muscle weakness. This means they may be at risk of developing serious complications if they are infected with the COVID-19 virus, regardless of their age.1

If you have questions about COVID-19, it’s best to contact your healthcare team (neurologist, GP and others). They can advise about the virus, its vaccinations and motor neurone disease (MND) treatments and support.

People living with MND can reduce the risk of infection through vaccinations, hygiene and social distancing. Relevant government services and support are also available.

You will find general information about COVID-19 and MND below. This includes information about the following:

  • vaccinations and boosters
  • reducing the risk of infection
  • what to do if you think you have COVID-19
  • COVID-19 treatments
  • breathing, MND and COVID-19
  • helplines and further information.

You can access the latest updates about COVID-19 case numbers, vaccines and other information in Australia at:

Vaccinations and boosters

COVID-19 vaccinations are effective at reducing infection with COVID-19, and limiting illness from the virus.2

You should stay up to date with all vaccinations recommended for your age or individual health needs. ATAGI provides advice on vaccines and dosages for each age and population group.

Help for booking vaccinations:

  • COVID-19 Vaccine Clinic Finder
  • Easy Vaccine Access (EVA) service – text Hey EVA to 0481 611 382 and someone from the National Coronavirus Helpline will call you back and find you a COVID-19 vaccine appointment (available every day from 7am to 10pm (AEST) with free interpreting assistance).

Boosters

A booster dose is an extra vaccine dose given after you complete the primary course to increase your protection against the disease.

Booster doses are recommended to maintain immunity against COVID-19. A booster will continue to protect you and your loved ones from infection with the disease.3 

In 2024, ATAGI recommends the following schedule for booster vaccinations:

  • 75 years and older - every 6 months
  • 65–74 years – at least every 12 months, but can receive every 6 months
  • 18–64 years with severe immunocompromise – at least every 12 months, but can receive every 6 months

COVID-19 vaccine advice and recommendations for 2024

Vaccinations for carers and disability, aged care and other workers

Medical and other forms of support for carers can reduce any further pressure and burdens experienced by them during the pandemic.This includes vaccinations. Vaccinations can help reduce the risk of COVID-19 infection, and serious illness for carers and support workers, and those they support.

The Australian Government has encouraged carers, disability workers, aged care workers and other support workers to get vaccinations and follow advice about COVID-19:

Vaccine side effects

Common side effects to COVID-19 vaccinations include pain where you had the injection, tiredness, muscle aches and others4  that you can learn more about with the healthdirect side effect checker.

If you are concerned about side effects:

  • talk to your GP, neurologist or other members of your healthcare team
  • call the Australian Government Department of Health COVID-19 Hotline on 1800 020 080 (available 24 hours a day), or
  • call 000 if you have difficulty breathing, a fast heartbeat, are wheezing, or are otherwise seriously unwell.

It also helps to check the accuracy and quality of information you read about vaccinations. The healthdirect website has a suite of fact sheets about the COVID-19 vaccines.

Quality checking can help if you come across “misinformation” about vaccinations. Misinformation includes false, misleading, or inaccurate health information about vaccinations. Misinformation is common offline and online, including through Facebook videos and other social media platforms.5

Checking the quality of information and using evidence-based advice from credible sources is important for learning about vaccinations.  

Influenza vaccine

The influenza (flu) vaccination is usually available around early April and you need it every year. 

COVID-19 vaccines can be given on the same day with an influenza vaccination.

It is best to speak with your healthcare team about when to schedule your vaccinations.

Reducing the risk of infection

Every precaution should be taken to prevent you, the people in your household and others you see regularly from becoming infected with COVID-19 and influenza.

Practising good hygiene and social distancing help to prevent the risk of virus infection. Using face masks, maintaining physical distance from others when possible, washing hands with soap and water and other kinds of hygiene can help.6 

Different states and territories have changing rules for use of face masks. You can check rules at healthdirect  

The World Health Organisation (WHO), healthdirect and the Department of Health provide useful information about good hygiene and social distancing. This includes information in videos, posters and other styles and formats.

It’s important to live life as best you can with MND. You may find it helps to balance the risks when making decisions or thinking about meeting other people, and choose what works for you within your state and territory guidelines.

If you are unwell or think you have COVID-19

Common symptoms of COVID-19 include fever, dry cough and shortness of breath.7 If you feel you have symptoms, you should test for COVID-19, isolate yourself and seek medical advice. 

You should let your MND clinical care team know of your concerns as soon as possible.

People living with MND may already have some difficulty with breathing. If you experience any increased difficulties or sudden onset of breathing difficulties, present to your nearest emergency department or call 000 for urgent help. Let them know in advance if you have tested positive or been exposed to COVID-19 so they can prepare for your arrival.

It is important to also know the full range of symptoms of COVID-19. Other symptoms that are less common and may affect some people include:

  • loss of taste or smell
  • aches and pains
  • headache
  • nasal congestion
  • red eyes
  • diarrhoea, or
  • a skin rash.

You can refer to the healthdirect symptom checker for help understanding symptoms and knowing when to seek help.

If you test positive to COVID-19, healthdirect provide guidance and information.

Treatments for COVID-19

Two COVID-19 oral antiviral treatments are available for the treatment of COVID-19.

These are available for people at higher risk of severe illness. People living with MND may be eligible. You can check your eligibility here.

Your doctor can also advise.

Breathing, MND and COVID-19

Over time, MND causes the muscles that support your breathing to weaken. This can lead to fatigue and difficulty sleeping and breathing. Body positioning, adjusting air flow, assistive devices and other techniques and equipment are used to manage difficulties with breathing.

Your healthcare team are the best and first contact about breathing, MND and managing the risk of infection from COVID-19 or living with the virus. Your team will understand what is most relevant to your situation and needs.

You may find it helps to also be aware of what COVID-19 means for:

  • use of oxygen therapy, and 
  • weakening of muscles used for breathing. 

Will I be at risk if given oxygen therapy for COVID-19?

Each clinical situation involving people with MND will be different.

Prolonged use of oxygen therapy can be risky for some people with MND. Prolonged use can change the balance between oxygen and carbon dioxide in your blood stream. However, oxygen may be prescribed by your medical team for short amounts of time to bring oxygen levels up.

In situations where oxygen is used, the person who is caring for you should liaise with your MND clinical care team, who understand your needs.

You can use a medical plan (e.g. information written down or available on your mobile phone or computer about your treatment for breathing with MND). Try to have this information with you at all times. If you do need emergency help, this information lets medical staff know that you have MND and that oxygen may need to be used with caution.

It also helps to plan ahead for emergencies and in case of COVID-19 infection:

Can I still use my non-invasive ventilator (NIV) if I have COVID-19?

Yes. NIV is especially important if you cannot breathe well without it. If you stop use of a ventilator there may be a higher risk to your health. Seek advice from your MND clinical care team.

Can still use other respiratory therapies (e.g. nebulisers, cough assist devices) if I have COVID-19?

Yes. If you stop use of these therapies, there may be a higher risk to your health. Seek advice from your MND clinical care team.

Helplines and more information

For more information about breathing management contact your GP, MND clinic or your MND Association on 1800 777 175.

Government support: National Disability Insurance Scheme (NDIS), My Aged Care and COVID-19

The Federal Government provides information about COVID-19 and how it impacts on its support and services used by people living with MND. For more information, see the links below::

COVID-19 information in community languages

Information about COVID-19 vaccines, use of face masks, social distancing and other public health advice has been translated into multiple languages for use in Australia and is available from:

If you need an interpreter for languages other than English call 1800 131 450.