A diagnosis of Motor Neurone Disease (MND) can raise many questions for the person receiving the diagnosed as well as their family, friends and support network. Here are five of the most frequently asked questions from the MND NSW Info Line, along with practical evidence-based answers, and helpful next steps.
Question 1: I would like to donate equipment to FlexEquip, what is the process?
FlexEquip accepts donations of equipment except for beds (including hospital-style beds) and respiratory equipment. If you would like to donate equipment that would go to people who are living with MND, please send an email to
- Photos of the equipment
- Make and model
- Age of the equipment
- Service history (if known)
- Location of the equipment.
FlexEquip will contact you directly if they are able to accept the donation and will work with you to organise a collection.
Question 2: MND can cause changes in cognition, what are the signs of this and who can help?
For approximately 50% of people living with MND, there may be changes in cognition and behaviour. Most people experience relatively mild changes. Therefore, it is important to look out for small changes.
Signs to look out for:
- Difficulty focusing or concentrating
- Lack of awareness or insight into MND symptoms
- Trouble in recalling information
- Difficulty making decisions, planning, or organising
- Difficulty trying new things and starting activities.
If you notice symptoms, talk to your multidisciplinary care team including, your general practitioner, neurologist, or clinical neuropsychologist. Changes in behaviour 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:
- MND Factsheet: Cognitive & Behaviour Change | MND Australia
- Cognition, Thinking & Behaviour in MND | MND Australia
Question 3: What is the difference between MND NSW and an MND Clinic?
MND NSW is a not-for-profit organisation that supports people living with MND, their families and carers. MND NSW provides information, support, equipment, and education.
MND Clinics are specialist clinics offer multidisciplinary care for people with MND. This means that health professionals from a range of disciplines work with each other to diagnose and manage MND symptoms.
All services from MND NSW are provided without cost to the person living with MND or their carers.
While some MND clinics are public, others are private which means there may be a cost to attend. Clinics are not available in all areas and there may be location-based eligibility requirements. You will need a referral from your neurologist or GP to attend a clinic.
Learn more:
Question 4: What supports are available to help me stay socially connected?
Staying socially connected is important for your well-being and overall mental health. MND can affect your mobility, speech, and energy so it is important to find the right supports to help you stay socially connected.
- Speak with an occupational therapist or speech pathologist about aids and equipment to make social activities easier and to help manage fatigue
- Attend a MND support group
- Ask your MND Advisor for assistance in linking with services or other supports to help you stay connected socially
- Contact Disability Gateway to find services in your local area.
Learn more:
Question 5: How do I tell others about my diagnosis when I am not ready for ‘everything’?
Nothing can prepare you for a diagnosis of MND. Having conversations about your diagnosis may feel daunting or overwhelming. People living with MND often report feeling fatigued by repeatedly telling the people in their lives about MND. How you decide to share your diagnosis is up to you.
Some things to consider:
- Give friends and family the MND Info Line number 1800 777 175 so they can get general information about MND and ask questions. Your privacy will always be maintained.
- Remember you don’t need to have all the answers right now
- Consider making a list of people you would like to tell in-person versus the people you can ask a trusted friend or family member to tell
- If you are telling a young person who has a close relationship with you, contact the National Centre for Childhood Grief for advice and support
- Be kind to yourself
- Take your time and do it at your pace.
Learn more:
- Video: Telling Others About Your ALS Diagnosis
- Living with MND: Friends & Relationships | MND Australia
- Home - National Centre for Childhood Grief
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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