This section includes in-depth information about managing MND.

Topics include:

  • Riluzole
  • Multidisciplinary care
  • Physical activity and MND
  • Relationships and intimacy
  • Communication and swallowing
  • Cognitive and behaviour change
  • Breathing and MND
  • Pain and MND
  • And more.

 

There is currently only one medication approved in Australia called Riluzole. Riluzole is prescribed for the treatment of amyotrophic lateral sclerosis (ALS) and progressive bulbar palsy (PBP) – the most common types of MND. 

Multidisciplinary care is a term used when a group of different health and community care professionals work together to provide treatment and support. 

Activities like walking, gardening, yoga, hydrotherapy and others that involve physical movement can help to strengthen or maintain healthy muscles whose nerves have not yet been affected by MND. 

Finding out that you have motor neurone disease (MND) can be overwhelming for you, your family, and your friends. There may be conversations you wish to have with the people you have connecting relationships with.

Some people with MND, but without a diagnosis of dementia, will experience changes to their thinking and behaviour. This is known as cognitive change and it is believed to affect around 50% of people diagnosed with MND. 

Some people may find the muscles used to help with breathing are getting weaker, these are the respiratory muscles. The right support can help make breathing easier.

MND affects the nerves that carry messages from your brain to your muscles. As these nerves gradually deteriorate, the signals cannot reach the muscles, so they become weaker, stiff and begin to waste. This can cause pain and discomfort which can interfere with your sleep and your overall quality of life.

Watch the Opening Address given by Dr Kirsten Harley and her daughter Kimi at the MND Australia Conference 2021. Dr Kirsten Harley is an Hon Lecturer in the Faculty of Medicine and Health at the University of Sydney and a board member of MND NSW. Kirsten was diagnosed with MND in 2013 and in this address she and her 15 year old daughter, Kimi Cabrera, share their strategies and stories for managing MND. Opening Address

You can also follow Kirsten's updates and insights on her personal blog page here: Kirsten Harley – Living with MND (home.blog)

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