On this page:

• Key points

• Have your breathing checked early and regularly

• What to expect from a breathing check (assessment)

• Understand your results

• Take action if your breathing changes

• Get help with your breathing

• Find out more

Key points

• Motor neurone disease (MND) weakens the muscles you use to breathe (respiratory muscles).

• A breathing check (assessment) uses questions and tests to check how well you are breathing and how well your breathing muscles are working.

• Have a breathing assessment soon after you are diagnosed with MND. Your first assessment gives your healthcare team a starting point to compare with later results.

• Regular breathing assessments can help find changes in your breathing over time.

• Your results can help you and your healthcare team decide if treatments or breathing support may help.

• Tell your healthcare team if you notice changes in your breathing. You do not need to wait until your next planned assessment.

Have your breathing checked early and regularly

MND weakens your breathing muscles over time. You may not notice this weakness at first. This is why regular breathing assessments are an important part of MND care.

Get your breathing checked soon after diagnosis. Your first breathing check (assessment) gives your healthcare team a starting measurement. This is called a baseline. Later results can be compared with your baseline and other results to see if your breathing has changed.

Your healthcare team will tell you how often your breathing should be assessed.

If you notice a change in your breathing, tell your healthcare team. Ask if you need another breathing assessment.

What to expect from a breathing check (assessment)

A breathing assessment can include several different tests. Each test checks a different part of your breathing.

Your healthcare team will explain which tests they recommend, why they recommend them and what you need to do.

You may not need every test. The most common tests are:

Vital Capacity (VC) or Forced Vital Capacity (FVC). This measures the total amount of air you can breathe out, after breathing in as much as you can. It gives an overall picture of your breathing in and breathing out muscles.

What to expect: You will be asked to breathe in and out of your mouth, into a device called a spirometer. You need to close your lips tightly around the mouthpiece, and a clip will be placed on your nose to prevent air from escaping. If weakness around your mouth makes this difficult, a mask that fits over your mouth and nose may be used instead.

You will be asked to take the deepest breath in you possibly can, and then breathe out hard and fast until your lungs are completely empty. It is normal to be asked to do this test at least two or three times, to ensure your best result is measured. This test is usually done whilst you are seated. You may also be asked to repeat the test lying down.

Maximal Inspiratory Pressure (MIP). This measures the strength of your breathing in (inspiratory) muscles.

What to expect: You will be asked to blow out first, and then breathe in as hard and fast as you can, through a mouthpiece that feels blocked. You may be asked to do the test more than once.

Maximal Expiratory Pressure (MEP). This measures the strength of your breathing out (expiratory) muscles.

What to expect: You will be asked to take a deep breath in, and then blow out as hard and fast as possible into a blocked mouthpiece. You may be asked to do the test more than once.

Sniff Nasal Inspiratory Pressure (SNIP). This is another way to measure your breathing in muscle strength. It targets the main breathing muscle (the diaphragm).

What to expect: A small plug is placed in one nostril. You will be asked to take a series of short, sharp sniffs through your nose. You may be asked to repeat it with the nasal plug in the other nostril.

Arterial blood gas test. This measures the amount of oxygen and carbon dioxide in your blood. Carbon dioxide is a gas that your body makes and removes when you breathe out.

What to expect: A healthcare professional takes a small sample of your blood from an artery. An artery is a blood vessel that carries blood away from your heart.

Overnight sleep tests. There are a number of different tests that can check your breathing while you sleep. A healthcare professional may ask you to use a machine called an oximeter at home. This reads the amount of oxygen in your blood, and is usually measured through a finger probe. Sleep studies provide more information about your breathing overnight, but may need to be done in hospital or at a sleep clinic. These can include a measure of the amount of carbon dioxide in your blood.

Understand your results

There is no single test or number that tells your healthcare team everything about your breathing.

Your healthcare team will look at your test results together with how you are feeling and any changes you have noticed. They may also compare your results with earlier assessments.

Ask your healthcare team:

• What did my breathing tests show?

• Has my breathing changed since my last assessment?

• When should I have my breathing checked again?

• Is there anything that could help my breathing now?

Take action if your breathing changes

Tell your healthcare team if you notice changes in your breathing, sleep or cough.

Changes can include:

• feeling short of breath

• finding it harder to breathe when lying down

• waking with headaches

• feeling very tired during the day

• having a weaker cough.

Get help with your breathing

Different healthcare professionals may be involved in assessing and supporting your breathing. These can include:

• a neurologist

• respiratory doctor

• respiratory nurse

• physiotherapist

• palliative care team

• general practitioner (GP).

If you don’t already have a healthcare team, contact your state MND Association for more information.

Find out more

Breathing and ventilation treatment

Breathing and MND: what you need to know