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Motor Neuron Disease - Keeping Nick Going

  • Thank you + new page for Nick

      26 September 2019

    In under a year, together we've raised over $48K for Nick, Sophia, and their family for the ever-increasing costs of the care they need. Thank you so much to all our generous donors. These funds have gone to the family's expenses, private carers, equipment, and other costs associated with Nick's disease.

    Nick is no longer able to easily access the page or the funds, so we are moving it to a new Give-a-Little page for the next fundraising drive, so that other family and friends can help manage things.

    Please visit, donate, and share https://givealittle.co.nz/cause/more-care-for-nick-ward-motor-neuron-disease

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  • Keeping on for Nick

      25 May 2019

    Even though Nick's condition continues to deteriorate, he finds the energy to let us know how he's doing and always welcomes your correspondence with him, which he always reads but can't always reply to. Your donations are important too, so keep them coming to this family that is trying to make the best out of, well, a crap situation.

    Here's what Nick posted on his Caring Bridge site on 17 May:

    Hi,

    Thanks for all your emails over the past couple of months and sorry for my lack of response.

    I've enjoyed catching up on your news and am always touched to know that you're thinking of us.

    I've been preoccupied recently with changes in my condition, namely my weakening left arm and increased difficulty with my speech, swallowing and breathing. My diminished arm strength has affected my ability to drive my chair and i've found it immensely frustrating loosing my mobility. Fortunately i'm expecting the delivery of headrest mounted controls next week and hopefully i'll get the hang of them quickly.

    Did you know that we produce and swallow up to 1.5 ltrs of saliva a day, hard to believe eh? Well you can take my word for it, it's true! Swallowing has become difficult and I have to expel what seems like industrial quantities of the stuff throughout the day and night. We're trying different drug and fluid regimens to deal with it but it's a bit of a moving feast. I'm using my ventilator 24/7 and am off it only briefly each day for showers and I have a tablet attached to my power chair, on which i have speech software. Due to the absence of a kiwi accent I now speak with what is thankfully a relatively gentle Aussie accent going by the name of Tyler!

    Today's music choice is Simon and Garfunkel - Keep the customer satisfied. I love it's energy and power, especially the brass - it's a wonderfully ballsy song. Sophia and I saw them in 2009 and i'll never forget when early into bridge over troubled water the PA cut out and without missing a beat the audience picked it up and sung it to conclusion...it was spine tingling.

    Love and best

    Nick

    Keep giving and stay in touch with Nick

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  • We did it! Thanks from Nick.

      24 March 2019

    Not only can Sophia and Nick get the universal remote and portable battery for his ventilator with our fresh batch of donations, but there's enough for a few special treats too. Nick says to say a very sincere thanks to everyone for your ongoing support. It really makes a big difference.

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  • New Equipment to Keep Nick Moving, March 2019

      13 March 2019

    We all gave a lot on this give-a-little page late last year. Since then, there are a couple of other needs that have come up which would help out Nick as Motor Neuron Disease progresses.

    If this is your first time to this page, scroll down and read Nick's story and his words of thanks.

    Nick needs to use his ventilator mask, which helps him breathe, not only through the night but increasingly during daytime as well, especially after periods of talking. If he leaves home, he can't take the ventilator with him unless there is a battery pack. This makes longer outings, like medical appointments and movies, distressing and uncomfortable.

    All methods of communication and entertainment, including Nick's email, text, tv, computer, and dvds, are going through his big screen in their lounge. A universal remote to control all of these, instead of asking others to change the remote for him, would make life a bit easier.

    A battery pack for his ventilator and a universal remote adapted to his use will cost around $1000. Let's raise this amount to show Nick how much we understand that it's these little things that can make a big difference to his days.

    Thanks so much for making a donation to Nick's page.

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  • Nick says thanks on 14 Nov 18

      15 November 2018

    Hello,

    Over recent days I’d been thinking about what to say by way of thanks. And when I sat down to write it, it all evaporated into thin air…typical!

    The response to this initiative has been so tremendously positive, I felt quite overwhelmed by it, immensely grateful too but still overwhelmed. I think Sophia felt the same.

    Nevertheless during the course of this illness, I’ve come to learn the importance of acceptance.

    Accepting change, accepting others as they are and accepting myself for who I am.

    So in the spirit of acceptance, I want to say a heartfelt thank you to you all for your unabashed generosity. We feel very blessed.

    And specifically a massive thank you to my wonderful extended family including all my treasured friends - old (who in some cases have been in my life for over 40 years) and new and to those of you that I haven’t seen in years but have answered the call anyway. And of course the unknown or anonymous donors, what a wonderful phenomenon you are.

    You’re all top notch, best in show, premium quality people – thank you for being you.

    Love Nick

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    • 16/11/2018 by leon rose

      It's a pleasure Nick, we were so happy to be able to help in some way. You are great people and have been in my life for over 30 years. We all want to make your guys lives easier and help in any way we can.

  • Sophia writes:

      9 November 2018

    Thank you so very much to everyone who has donated and left such beautiful thoughts. We are feeling very loved and I am starting to get a bit more help for Nick and our family starting this weekend - so Thank you, Sophia.

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    • 09/11/2018 by Sally Murrey

      An absolute pleasure and so pleased to be able to help in some way. Thought are with you all up there xx

  • $10K raised for the Duncan-Wards

      9 November 2018

    Thanks to all the generous donors who are supporting Nick, Sophia, and their kids. The response has been quick and amazing: this morning in NZ the Give a Little account has reached $10,000! Thank you all so much.

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    • 09/11/2018 by Sophia Duncan

      Thank you so very much to everyone who has donated and left such beautiful thoughts. We are feeling very loved and I am starting to get a bit more help for Nick and our family starting this weekend - so Thank you.