The MND Australia ‘Living Better for Longer’ fact sheet series describe support and treatments that research has shown to help people live better for longer with motor neurone disease. This overview fact sheet (EB1) is the first in this evidence-based series. Others in the series are listed below.
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 team approach to your care. Read fact sheets EB2/3 to find out about what makes up multidisciplinary care, who is in a multidisciplinary care team and where to find them.
Riluzole (Rilutek™) is a medication that does not cure motor neurone disease but, for people with the most common forms of motor neurone disease, it may prolong median survival by two to three months (median is the midpoint – half those taking riluzole have survival prolonged by more than two to three months). 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 fact sheet EB4 for information about riluzole.
Motor neurone disease causes the muscles you have control over to weaken. This includes the muscles involved in breathing – the respiratory muscles. Read fact sheet EB5 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 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 fact sheet EB6 to learn about these and other strategies that may help your breathing.
Increasingly, many people with motor neurone disease use non-invasive ventilation (NIV) to get more air into their lungs. Read fact sheet EB7 to find out about NIV, medications that are sometimes prescribed by doctors and other important points to think about.
You can also watch our short video all about NIV on our Breathing and MND page.
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 permanent feeding tube is placed into the stomach through the abdominal wall. This tube can be used for liquid feeds, fluids and medications and can help you maintain adequate nutrition. Significant breathing muscle weaknesses can affect your recovery from this procedure, so it is important to discuss this with your health care team early on. To find out more about gastrostomy, read fact sheet EB8.
Your healthcare team are your best contact for any concerns or specific questions you may have about COVID-19, vaccinations and MND treatments and support. COVID-19 vaccinations are effective at reducing infection with COVID-19, and limiting illness from COVID-19.
Governments in Australia are encouraging everyone to get vaccinated because people who are vaccinated, and in turn the whole community, have greater protection from COVID-19.
The Healthdirect website has comprehensive fact sheets about the COVID-19 vaccines.
The influenza (flu) vaccination is usually available around early April and you need it every year, however the COVID-19 vaccine two-dose schedule should also be a priority. You should discuss the timing of the flu vaccine with a GP.
Some people are not offered a key point of contact when they are diagnosed with motor neurone disease and are left to find their own way around a rather complex health and community care system. If this is the case for you, talk to your general practitioner, neurologist or state MND Association. They should be able to guide you and ensure you can access the services and information you need.
MND Australia is the national voice representing all Australians who share the vision of a world without MND. We improve the lives of people living with MND by:
The six state MND Associations, representing all states and territories, are members of MND Australia and the MND Association of New Zealand is an associate member. MND Australia is an active member of The International Alliance of ALS/MND Associations, which represents ALS/MND Associations around the world.
Research is the only way that we can change the future of MND. Our research arm, MND Research 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.
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: