Newly Diagnosed

A diagnosis of MND can feel overwhelming. You, your family and everyone close to you will need time to adjust.

Living with MND is extremely challenging. However, it’s not necessarily as bleak as people imagine. With strong community and specialist support, many people maintain some independence for a significant part of the condition’s course, and experience a quality of life they may not have imagined possible at the time of diagnosis.

The MND NZ Support Service will help you access the appropriate care to manage your symptoms, so that you can live your life as fully as possible.


Being diagnosed with motor neurone disease is a difficult and stressful time. You’ll probably feel incredibly overwhelmed in the first few days and weeks, and struggle to understand the ramifications involved.

To help with the process, we’ve compiled a list of tips for patients who have recently been diagnosed with MND based on information from the ALS Association.

  • Show yourself some compassion. You will go through a whole host of different emotions in the first few weeks, from fear to anger, denial to grief. This is completely understandable and you need to give yourself time and space to do this. Be kind to yourself, tell yourself that this is a normal response and that the darkness you’re feeling will pass and you will start to feel more positive.
  • Get support. You are going to need your friends and family around you — not only to offer physical help but also to offer emotional support. Building a good support team is essential to carry on, to offer you choices but also to give your primary caregiver a break when necessary. Don’t be afraid to ask for help when you need it, people will be happy to help make life easier for you.
  • Educate yourself. Some people like to find out as much about MND as they can, by reading online medical journals, websites, information about research etc. Others prefer to get information in person from health professionals. Whichever your preference, it is good to understand MND and be prepared.
  • Stay one step ahead. Anticipating what you’ll need for the next step of your disease will help you maintain control. Your MND NZ Support Worker can help you get equipment before you actually need it, rather than waiting until you do.
  • Look after yourself. It’s important to do the things that help your relieve stress such as yoga or meditation, and make sure you get plenty of rest.
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