Another busy month for the MND NSW Info Line. In November we responded to 82 enquiries from the MND community. Here are five of the frequently asked questions we responded to.
1. How common is MND?
According to MND Australia, around the world over 400,000 people are living with MND. In Australia there are roughly 2,100 people living with MND with two people being diagnosed daily. By the age of 85 it is estimated that there is a 1 in 300 risk of developing the disease. Men aged between 50-60 are most diagnosed with MND.
2. What is a cough assist machine?
A cough machine is used to assist in clearing secretions from the chest when someone is unable to do this on their own. It works by applying a positive pressure which fills the lungs before switching to a negative pressure which stimulates a natural cough.
For a video explanation visit:
3. If I choose to get a feeding tube, can I still eat normally?
Yes, you can. You can choose to have a feeding tube fitted in advance so it can used when you needed it. You will need a referral from your GP to a Gastroenterologist. If choosing to continue eating once it has been fitted, it is important to discuss this with your speech pathologist or dietitian. For further information visit:
4. How can I get support to assist around the home?
My Aged Care (MAC) and the National Disability Insurance Scheme (NDIS) are two different ways where people with MND can access support to assist around the home. MAC is for people who are aged 65 and over, and the NDIS is for people under the age of 65 when they apply. These supports may include domestic support, home maintenance and modifications, transport and personal care.
For more information about government support and how to apply contact your MND Advisor or the MND Info Line on 1800 777 175.
5. I’m finding it hard to start a conversation with my loved one about planning for end-of-life, do you have any resources or tools I can use?
There are a number of tools and resources available to people to assist with initiating conversation about planning for the future and end-of-life.
Palliative Care Australia have a free discussion starter booklet which assists people to have these important discussions. The booklet also answers some common questions that may arise.
To accompany the booklet, Palliative Care Australia have released a discussion starter card set. The cards have various statements on them which you place in order of importance. They are helpful in both initiating conversations and ordering what’s important to you and your priorities.
MND Australia’s End of Life Care: A guide for people living with MND provides important information specifically about MND and end-of-life planning. The book includes information about things you are likely to experience as MND progresses, tips about organising financial, legal and other personal affairs, advanced care planning as well as informaiton about genetic testing and organ and tissue donation.
You can request a hard copy of this book by contacting your MND Advisor or the MND Info Line on 1800 777 175.
For further information:
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