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Living with MND

Your stories

It can be helpful to read about the experiences of others with MND. Below is a collection of stories as told by New Zealanders with MND, or those that have cared for someone with MND.

If you want to share your story and personal experiences on our website, or in the media to raise awareness of MND, you can do so here. Raising awareness of MND is vital and sharing personal experiences is a powerful way to do this.

Your Stories

Kay Rayner: “Ask questions when you feel ready”
Katherine Lancaster: The friendship inspired by MND
Rachel Thornton: “When Mum was diagnosed I had this feeling of helplessness”
Claire Reilly: A Doctor’s perspective
Dawn O'Dea: “Together we have planned a fabulous funeral”
David Seymour: “It’s go hard or go home for me”
Peter Davey: “MND is the greatest challenge of my life”
Kim Stephens: “Always, always ask for help”
Kevin Manning: “It helps to have difficult conversations early”
Meretaka Brown-Houghton: “You are allowed to feel”
Nicci Reynolds: “It's about quality not quantity”
Candy Inkson: “I needed that care and support”
Karen Booth: “It was a relief to know what we were dealing with”
Norm Hart: “You are not on your own”
Erik Oosthuizen: “Remember you are not alone”.
Sheri: “Philip was living with MND, truly living.”
Jo Cherry: “Talk and connect with as many people as you can for support and advice”
Jennifer Sturm: “Know that love is the most important thing you can give”
Mary Tito: “Self-care is vital”

Our Ambassadors' Stories

Brett McGregor: My Dad had MND
Annabel Langbein: My Mum had MND
Bernadine Oliver Kerby: My Dad had MND
Tamati Coffey: How MND affected our family