A diagnosis of Motor Neurone Disease (MND) can raise many questions for the person receiving the diagnosis as well as their family, friends and support networks. This month we take a look at the top 5 questions we’ve been asked lately from across NSW, ACT, and NT. From palliative care to considering telling your employer about MND, these are the answers you have been looking for.
Question 1: I have noticed some changes in thinking and behaviour, what can I do to manage this?
For approximately 50% of people living with MND, there may be changes in cognition and behaviour. Cognition refers to mental processes that take place in the brain, including thinking, attention, language, and memory. Most people experience relatively mild changes.
Top tips to manage cognitive and behavioural change:
- Use simplified communication and use aids for remembering
- Reduce distraction and background noise
- Keep a regular routine
- Talk to family and friends about the changes and what they can do to help
- Consider speaking to a counsellor or psychologist if the changes are affecting your mood, overall well-being, or relationships.
Changes in behaviour and thinking may also be symptoms of other conditions or side effects from medications. Therefore, it is important to consult your health care team for opinion and management.
Learn more:
Question 2: What is the difference between the Carer Program at MND NSW and Carer Gateway?
MND NSW’s Carer Program provides support and information to people who are caring for a person living with MND. This includes webinars and events for MND carers and an online MND Support Group called Carer Kitchen Table Conversations.
Carer Gateway is a larger Australian Government program providing free services and support for all carers. This can include counselling, respite options, online skills courses, coaching, and help to access financial support.
Learn more:
Question 3: I have just been diagnosed with MND, should I tell my employer?
MND affects everyone differently and therefore the impact it has on your working role can depend on MND symptoms, the type of work, and the types of tools or equipment you use at work.
Some things to consider:
- Seek health, financial, and legal guidance before making decisions about work or talking to your employer
- Although there is no legal obligation to tell your employer, you will need to disclose MND if the symptoms impact on your work duties, put yourself or others at risk, or during a pre-employment medical check
- If you do not disclose your MND diagnosis and it leads to a workplace injury, there may be complications in accessing compensation schemes.
Learn more:
Question 4: Does FlexEquip offer equipment for trial?
No, FlexEquip does not offer any equipment for trial.
However, FlexEquip can provide an iPad for a short 2-week loan to a health professional working with a FlexEquip participant to use as an assessment tool. The iPad is preloaded with 5 specific communication apps and includes Bluetooth switch connector and jelly bean switch.
Learn more:
Question 5: What is palliative care?
Palliative care is for anyone diagnosed with a life-limiting illness and may often be accessed from the point of diagnosis. Palliative care is more than end-of-life-care.
Palliative care can be access at home and is designed to support quality of life by focusing on:
- Managing physical symptoms such as pain and breathing changes
- Supporting emotional, spiritual, and psychological well-being
- Helping navigate services and planning ahead
- Meeting your personal needs, such as getting out into the community and engaging in hobbies
- Supporting your family and carers.
Your GP can make a referral to a palliative care team. Your MND Advisor can also help you to understand palliative care and what is available in your area.
Learn more:
Do you have a question about MND?
Whether you’re newly diagnosed, caring for a loved one, or navigating the MND space as a health professional, we’re here to help.
Call us on 1800 777 175
Or submit and online inquiry at Contact MND NSW
“We can't do this alone. But together, we're unstoppable.”
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