Newly Diagnosed

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

The progression of MND is unpredictable, and varies significantly from person to person. Being informed about the disease will enable you to plan your life as best as you can, and we hope you find the information in this section of the website helpful.

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


Telling others about your MND diagnosis may be difficult. Some people share immediately with family and friends, others prefer to wait.

Telling others can be more challenging than dealing with your own responses, so you may want some support.

As difficult as it may feel at first, having open conversations about the impact of your diagnosis can be helpful. It may make it easier for everyone to share concerns, now and in the future.

Confusion and grief are a natural part of the process, and identifying a support network may help.

Talking with young people

MND Scotland has a useful fact sheet called Telling Children About MND, and another booklet aimed at teenagers called So What Is MND Anyway.

Talking with young people about MND is a pack of six information booklets (8 to 20 pages each) from Australia's MND Care.

The MND Association of England and Wales also has a range of advice including a web app for young people, called So What is MND Anyway?

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