Introduction

The MND Australia evidence-based fact sheets highlight support and treatments that research has shown to help people live better for longer with motor neurone disease.

The fact sheets can be viewed online, or saved to pdf and printed.

Some of the key fact sheets are listed below: 

Multidisciplinary Care

Health professionals can give you better care and advice when they take a coordinated, team approach to your care. Read the Multidisciplinary Care fact sheet to find out more about multidisciplinary care, who is in a multidisciplinary care team and where to find them.

Riluzole 

Riluzole (Rilutek™) is a medication that may prolong median* survival by two to three months for people with the most common forms of motor neurone disease. Riluzole does not cure motor neurone disease but people who start taking riluzole early in their disease progression may be more likely to remain in the milder stages of the disease for longer than those not taking riluzole. Read the Riluzole fact sheet for more information.

*Median is the midpoint – survival was prolonged by more than two to three months in half of the people studied. 

Breathing assessment 

Motor neurone disease causes the muscles you have control over to weaken. This includes the muscles involved in breathing – the respiratory muscles. Read the Breathing Assessment fact sheet for information about how breathing muscles work and why it is a good idea to have a ‘baseline measurement’ of your breathing function soon after diagnosis with MND.

Breathing and MND: what you can do 

Positioning, adjusting room airflow, staying away from coughs and colds and conserving energy are just some of the simple techniques you can use to manage your breathing. Read the Breathing and MND: what you can do fact sheet to learn about these and other strategies that may help your breathing.

Breathing and Ventilation 

Many people with MND use non-invasive ventilation (NIV) to get more air into their lungs. Read the Breathing and Ventilation fact sheet to find out about NIV and other important points to think about.

You can also watch our short video all about NIV on our Breathing and MND page.

Considering gastrostomy - PEG and RIG 

MND may cause the muscles involved in chewing and swallowing (the bulbar muscles) to weaken. A gastrostomy is a medical procedure during which a permanent feeding tube is placed into the stomach through the abdominal wall. Read the Considering Gastrostomy fact sheet to find out more about gastrostomy.

Why research into effective treatments matters

Research is the only way that we can change the future of MND. MND Australia invests in research with the greatest chance of leading to the development of effective treatments and improving the lives of people with MND.

We believe that it is only a matter of time and hard work before we unravel MND’s mystery. A cure is out there and researchers in Australia and around the world are working hard to find it.

Find out more about the MND Australia research program

How to sort fact from fiction

MND Associations are often contacted by people living with MND and their families about treatments being offered both here and overseas that claim to treat or cure MND. Often, these treatments are promoted on websites that feature in internet search results when people are searching for information about MND. It can be difficult to sort fact from fiction and to distinguish good quality health information from paid advertising. 

The facts sheets in this series focus on effective treatments currently available for MND, that enable a person with MND to live better, more independently and for longer.

To learn more about evidence-based research and to help sort fact from fiction you can:

• contact the MND Association in your state or territory, or
• visit ALS Untangled which aims to help patients and families make informed decisions regarding alternative or off-label treatments.