A busy October saw the MND NSW Info Line respond to over 100 enquiries. These enquiries covered a variety of topics including, accessing MND information, the Carer Program, Frontal-temporal Dementia and headmaster collars. Here are your top 5 questions for the month of October.
1. I have been recently diagnosed with MND, where can I go to learn about MND and the supports available?
If you have been recently diagnosed with MND, we are here to support you.
MND NSW Info Line
The MND NSW Info Line is a service available to people from NSW, ACT and the Northern Territory. Anyone from the MND community, including people who are newly diagnosed and their family members, can ask questions about MND and be linked with further information. The Info Line Advisor can talk to you about your situation and provide relevant information to you via the email or the post. They can provide information about MND NSW services and support you to complete our intake form.
Contact details of the Info line are:
- 1800 777 175 Freecall - New South Wales, Australian Capital Territory and Northern Territory.
- Email:
This email address is being protected from spambots. You need JavaScript enabled to view it. - Hours: 9am to 4.30pm Monday to Friday
The MND NSW website
The MND NSW Website provides information about MND, symptoms and symptoms management, events as well as the support available to the MND community
Newly Diagnosed Info Session
Attending a MND NSW information session for people recently diagnosed with MND is another way of learning more about MND and the supports available. These sessions are held monthly and are for people who have been diagnosed with MND, their family and friends. To find out about the next information session:
- Visit: All Events
- Or contact the MND NSW Info Line on 1800 777 175.
2. How do I join the MND NSW Carer Program?
The Carer Program is for family carers, family members and friends of a person living with MND, and it is free to join. Joining the program is simple, complete our Online Intake Form and our Intake team will send you a Service Agreement to review and sign. Once this is complete, you will be contacted by our Carer Coordinator to welcome you to the program. For further information visit
3. What is a Headmaster Collar and how can I access one through FlexEquip?
A headmaster collar is a brace/collar that supports the head and the neck for people who experience neck muscle weakness.
To access a headmaster collar through FlexEquip, you will need to:
- Ask your Physiotherapist or Occupational Therapist (OT) if it is suitable for you.
- If it is suitable, an OT will place a referral on the FlexEquip Website.
- FlexEquip will send you the equipment.
For further information visit:
4. What is MND/FTD?
According to MND Australia, 15% of people living with MND will experience changes to the frontal and temporal lobes of the brain as a direct result of MND. When this occurs, it is known as MND with Frontotemporal Dementia or MND/FTD. The frontal and temporal lobes of the brain control mood, memory, behaviour, attention, judgement and decision making. In some cases, the dual diagnosis can be caused by a gene mutation which is known as C9orf72.
For further information visit
- Cognitive and behaviour change in MND
- Some people with MND may also be diagnosed with dementia: Learn about MND/FTD
5. If I am experiencing a crisis, who should I contact?
In the event of a crisis, you should contact.
- Triple Zero 000.
- Lifeline 13 11 14.
- Carer Gateway for Emergency Respite 1800 422 737.
MND NSW is not a crisis service.
Ask us a question!
Get in touch with us via 1800 777 175 or
Your question might be in our next month’s Top-5!