Living Better for Longer evidence-based fact sheets

Overview (EB1) - Series of 8 ‘Living better for longer' evidence-based facts sheets.

Each fact sheet explores interventions that research has shown helps people live better for longer with motor neurone disease.

The health professionals you consult can give you better care and advice when they are knowledgeable about motor neurone disease and have a coordinated, multidisciplinary approach to your care. The multidisciplinary care fact sheet explains what multidisciplinary care is and how you can get it.

The multidisciplinary care team fact sheet explains who is on a multidiscplinary care team and what a key worker does.

Riluzole is a medication that does not cure motor neurone disease but, for people with the most common forms of motor neurone disease, it probably prolongs median survival by two to three months (median is the mid-point - half those taking riluzole have survival prolonged by more than two to three months). 

Read this fact sheet for information about how respiratory muscles work and why it is a good idea to have a ‘baseline measurement' of your breathing function soon after diagnosis with motor neurone disease. 

Positioning, adjusting air flow in the room, physiotherapy, breathing exercises, assisted coughing techniques, staying away from people with colds, influenza or respiratory tract infections and saving your energy are just some of the simple techniques you can use to manage mild respiratory symptoms.

Increasingly, many people with motor neurone disease use non-invasive ventilation (NIV) to get more air into their lungs. Read this fact sheet to find out about NIV and to also find out who to see for medications that may help you feel more comfortable if you are experiencing breathlessness.

Motor neurone disease may cause the muscles involved in chewing and swallowing (the bulbar muscles) to weaken. A gastrostomy is a medical procedure during which a short fixed tube is placed into the stomach through the abdominal wall. This tube can be used for liquid feed and fluids. Other symptoms of motor neurone disease, such as significant respiratory muscle weaknesses, can affect your recovery from the procedure. To find out about gastrostomy, read this fact sheet.