Breathing problems are one of the major consequences of motor-neurone disease (MND), and a leading cause of death. But there are ways to make breathing easier.

An estimated 1,200 Australians are currently living with MND – a degenerative and incurable condition that causes everyday functions such as breathing, speaking, swallowing and moving to become increasingly difficult as muscles become weaker.

The good news is that more and more therapies and aids are becoming available to help improve the quality of life of people with MND. Research shows that the vast majority of people with MND will eventually rely on non-invasive mechanical aids. Among the alternatives is the use of non-invasive ventilation (NIV) to assist with breathing difficulties.

Here’s how to identify the signs of respiratory impairment and more information on when to introduce NIV.

Did you know?
According to an information sheet published on www.mndassociation.org, here’s what happens to breathing in people with MND:

– The muscles between the ribs and diaphragm weaken.
– The muscles of the neck and shoulder become involved in breathing.
– Less air is drawn into the lungs, so there’s less oxygen in the blood.
– It becomes increasingly difficult to expel carbon dioxide-rich air.

The signs of potential respiratory impairment will almost always include:

– A weak cough
– Shallow breathing
– Increased respiratory rate
– A weak sniff
– Abdominal paradox (inward movement of the abdomen during inspiration)
– Reduced chest expansion on maximal inspiration
– Use of accessory muscles of respiration
– Tiredness
– Disturbed sleep
– Impaired concentration

Considering the options

Impairments in respiratory function will develop gradually over time. It’s important to discuss the problems and treatment options with the attending doctor before impairment sets in.

Your GP is suitably positioned to refer you to a respiratory specialist or palliative-care expert, since NIV may not be suitable for all people living with MND. If this is the case, the healthcare team will provide simple advice on how to ease breathing, how to relax, how to ease breathing during sleep, and how to maximise breathing efficiency.

Although it’s important to discuss treatment options before the condition becomes severe, the process can be upsetting for both the caregiver and the person with MND. It’s important to choose the time carefully to discuss options with the consent of the patient, and to handle decisions sensitively.

The discussion can take place at one or more of the following times:

– Soon after diagnosis.
– When respiratory function starts to diminish.
– While monitoring the breathing of the person.
– When the person with MND asks for advice on NIV options.

Advice/information should include facts on the following:

– Signs and symptoms of respiratory impairment.
– Benefits and availability of respiratory interventions.
– Limitations of each of the interventions.
– How it will not stop the progression of the disease.
– Importance of regular respiratory function tests.
– Palliative strategies as an alternative to NIV.

The lowdown on NIV

According to the National Institute for Health and Clinical Excellence in the UK, non-invasive ventilation (NIV) refers to methods of giving a person ventilatory support without placing an artificial airway in their main windpipe.

Options include:

– A mask covering the nose.
– A mask covering the mouth and nose.
– Nasal tubes, connected to a ventilator, which provides an extra flow of air when the person tries to inhale.
– A mouthpiece, connected to a ventilator.

More research

It’s best to research all the available options before you make a decision. If you’re not sure where to begin with your research, or if the information is current, speak to your doctor for assistance.

Once it’s been decided which method of NIV is appropriate to the severity of the impairment, it’s advised that family and caregivers arrange training on what to do in the event of respiratory failure.

REMEMBER: MND affects people differently. For this reason, it’s important to work closely with the patient’s team of healthcare providers.

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