Breathing and ventilation treatment

Breathing uses muscles. The main muscle used is the diaphragm, a large muscle under your lungs. Muscles around your ribs also help you breathe.

These muscles help move air in and out of your lungs. MND can weaken them, making it harder to take a full breath, cough strongly and move enough air in and out.

Changes in your breathing muscles do not always feel like you are finding it harder to breathe (breathlessness) at first.

You may notice:

During sleep or when you wake up

• waking often during the night

• morning headaches

• feeling unrefreshed when you wake up

• feeling sleepy during the day

Breathing, speaking or coughing

• difficulty taking a full breath

• faster or shallower breathing

• shortness of breath

• finding it harder to breathe when lying flat

• needing another breath after speaking fewer words

• a weaker cough or sneeze.

Other changes

• unusual tiredness or fatigue

• reduced appetite

• difficulty concentrating or feeling confused

• feeling irritable or anxious.

You may not experience all of these changes.

Tell your healthcare team if you notice a change or are concerned about your breathing.

You should not wait until breathing becomes difficult.

Ask you healthcare team about:

• how your breathing will be monitored

• when you should have a breathing assessment

• any changes you have noticed

• what breathing support may be available now or in the future.

A breathing assessment helps you and your healthcare team understand how your breathing is changing and make decisions about your care.

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

There are ways you can support your breathing to make you feel more comfortable:

Positioning

If breathing is harder when you lie flat - sitting upright, leaning forward or using pillows may make breathing more comfortable.

Cough support

As breathing muscles weaken, coughing can become harder. A physiotherapist can suggest techniques or equipment that may help you cough and clear your airways.

Saliva management

Changes in saliva can make breathing and clearing your airways more difficult. Your healthcare team can help you manage saliva.

Breathing exercises

Your physiotherapist or respiratory team can advise whether particular breathing techniques or exercises may be useful for you.

Medicines

Some medicines may help symptoms such as breathlessness or anxiety related to breathlessness.

Talk to your healthcare team before starting or changing medicines.

A note about oxygen

Oxygen does not usually help breathing problems caused by weakened breathing muscles and may sometimes make them worse.

If you need oxygen for another health condition, use it with advice from your healthcare team.

Learn more:Fact sheet 1 - Breathing and MND: what you can do

Physiotherapists: a vital part of your care team

Ventilation is breathing support that helps move air in and out of your lungs.

It does not stop MND or prevent your breathing muscles from becoming weaker. Ventilation can help improve symptoms such as poor sleep and breathlessness, improve quality of life and, for some people, help them live longer.

There are two main types of ventilation discussed in MND:

• non-invasive ventilation (NIV) - breathing support through a mask, to make it easier for you to breathe,

• tracheostomy ventilation (invasive ventilation) - breathing support through a tube placed in the windpipe, to breathe for you.

For most people with MND who need ventilation, NIV is the main form of breathing support considered.

Non-invasive ventilation, usually called NIV and sometimes called BiPAP, uses a machine to support your breathing.

Air is delivered through a mask over your nose, mouth or both. This helps move air in and out and reduces the work for weak breathing muscles.

NIV does not require surgery. Ventilation can help people:

• sleep better

• reduce breathlessness

• feel better during the day

• improve quality of life

• live longer.

• link to NIV information/infographic sheet

Hear from clinicians, people living with MND, and their carers, about what is NIV and why it’s important :

What is NIV? Why is it important in MND?

When should I discuss NIV?

NIV can be discussed with your health care team before you notice breathing problems, or when your breathing assessment or symptoms show changes.

Talking about NIV early gives you time to understand what it involves, ask questions and think about what matters to you.

Prepare for the conversation

Talking about NIV with your healthcare team is an important part of the decision-making process.

The online NIV question builder can help you think about what matters to you and helps prepare questions for your healthcare appointment.

The questions you want to ask can be downloaded as a list and printed.

You can also print:

• the NIV question guide – short, to take to your healthcare appointment (PDF)

• the NIV question guide – long, to take to your healthcare appointment (PDF)

Hear from people living with MND and their carers about how they found out about NIV.:

• Journey to NIV and decision making

It can take time to get used to the mask and machine. Many people begin by using NIV for short periods of time.

Some people experience problems early on, such as:

• the mask feeling uncomfortable or adding pressure on the face

• air coming out of the mask and into the eyes

• feeling uncomfortable or anxious wearing the mask.

There are different types of masks, and your healthcare team can adjust the mask or equipment to improve comfort. Over time, most people overcome these problems and NIV becomes part of their daily routine.

Hear from people living with MND, their carers, and healthcare professionals about starting NIV and getting used to it:

• Starting NIV for the first time

• Becoming familiar with NIV

What is everyday life with NIV like?

People experience NIV differently. For some people, NIV can mean:

• sleeping better

• feeling less breathless

• having more energy during the day.

These benefits can make everyday activities easier and help improve comfort and quality of life.

Your family, carers and healthcare team can be involved in planning how NIV fits into daily life . You may need help:

• moving the equipment

• putting the mask on or taking it off

• maintaining the equipment

• keeping your airways clear.

As your breathing needs change, you may use NIV for longer periods, including during the day. Ask your health care team for advice on what you can do to make this easier.

Hear from people living with MND, their carers, and healthcare professionals about the benefits of using NIV, how NIV use might change over time, and ideas to make NIV work for you:

• Personal benefits of NIV

• Living with NIV

NIV is suitable for many people with MND, but it is not suitable for everyone.

There is no single decision that is right for every person. It is YOUR decision.

Your healthcare team can help you understand:

• why NIV is being suggested

• what benefits it may offer

• possible difficulties or limitations

• what using NIV could mean for everyday life

• what other options may be available.

Your own preferences, goals and circumstances are an important part of the decision.

Use these tools to help you ask the right questions and to help you make a decision:

• NIV question builder (for creating your own question list)

• Printable NIV question guide - long

• Printable NIV question guide - short

• NIV and MND information sheet

• Assisted ventilation decision support tool

Family members and carers may be involved in decisions about ventilation and in helping with its everyday use.

You may have questions about:

• equipment and masks

• daily routines

• getting out and about

• what to do if equipment stops working or there is a power failure

• how much practical help may be needed

• training and support for carers.

Ask the healthcare team what support and training are available for you and the person using NIV.

Hear from carers and clinicians about their experience of supporting someone using NIV:

• NIV and impact on carers

Tracheostomy ventilation, sometimes called invasive ventilation, uses a machine to provide breathing support through a tube placed into the windpipe through the neck.

It may be considered if NIV is not suitable or no longer provides enough breathing support.

Tracheostomy ventilation can provide ongoing breathing support but requires surgery and significant daily care. It is not commonly used for people with MND in Australia.

If you would like to understand or consider tracheostomy ventilation, talk with your healthcare team

Ventilation is a personal choice.

You can decide not to start ventilation, even if your healthcare team believes it may help you.

Talk with your healthcare team about:

• what the decision may mean for you

• other ways symptoms can be managed

• what support is available.

Tools to help:

• NIV Question guide

• Assisted ventilation decision support tool

What if I want to stop ventilation later?

You can choose to stop using ventilation after you have started using it.

If you have become dependent on ventilation to breathe, stopping it can be life-threatening.

Respiratory and palliative care specialists can explain what would happen and provide care to manage symptoms such as breathlessness and anxiety.

Some people want to understand this possibility early. Others prefer to return to the information when it becomes more relevant.

• NIV question builder

• NIV question guide – short

• NIV question guide – long

• NIV and MND information sheet

• NIV video series

• Fact sheet 1 - Breathing and MND: what you can do

• Fact sheet 2 – Breathing and MND: an introduction to breathing assessment

• Assisted ventilation decision support tool

• Planning ahead and talking about end of life

Acknowledgements

The research to develop the NIV resources was led by the Institute for Breathing and Sleep and The University of Melbourne, funded by FightMND, Institute for Breathing and Sleep, and NDIA. With special thanks to the more than 50 people from across Australia who co-developed these information resources, including people living with MND, family caregivers, healthcare professionals, and researchers.

Thanks to the MND Association UK for permission to adapt their Information resources related to Breathing and ventilation.