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.

NEWLY DIAGNOSED

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.

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

Although there is no cure for MND yet, research has shown some early interventions can help people with MND live better for longer. These include getting multidisciplinary care, having good nutrition and using non-invasive ventilation. See the Living Better For Longer section of this website for more information.

How people manage their earlier symptoms of MND, particularly respiratory symptoms, can affect how symptoms that may arise later can be managed.

Early discussion about symptom management can also help people with MND to plan ahead.

Your nearest MND NZ Support Worker can provide you and your family with information, education, advice and support. Support Workers visit face-to-face when possible. They also provide email and telephone support.

There is one medication approved for treatment of MND in New Zealand: Riluzole (Rilutek). Riluzole prolongs median survival by two to three months. It has been shown to keep people with MND in the milder stages of the disease for longer, if they start taking it early in the disease progression. For more information, click here.

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