Never Give Up.......Motor Neurone Disease.

Friday, August 24, 2007


Just what are we…we are a free standing, free thinking class of warm-blooded vertebrae animals. We have the advantage over other classes in that we walk upright and have a highly developed brain. We have the ability to work in many environments and make adjustments to the way that we as a whole live.
In other forms of life on this planet there are, in many instances, what we would call a symbiotic relationship. You have a host and a parasite, both living as one and eventually it is the parasite who comes out on top.
To all of us with ALS/MND we also have a symbiotic relationship. Like all parasites ALS/MND has to feed and it does that slowly and surely by eating away the muscles that holds our bodies together.. Muscles and tendons are part of the framework making up the human body. You remove or damage them and we are in trouble.
We can not back out of this relationship, from this disease that lives within us but we can learn to live with it and adapt to the conditions that are imposed on us until such time that our bodies can no longer tolerate the restrictions, the boundaries and the far reaching consequences of a condition that we still know nothing about.
ALS/MND has many tentacles spread over most of the world and once it makes contact with an individual will not let go.
But unlike other forms of life we hope to find ways of beating the odds and through many agencies and medical institutions world wide we are looking at finding a cure or at best a way to improve the quality of live that we have in the meantime. It may yet take many years but if we can rid ourselves of this complex and difficult condition mankind will be better off.
I remain positive and try to be a support (via my blog) to others with this disease.


  • It is with much interest that I write to you I have read the articles in the Upper Hutt Leader and think that I may be of some help to you from time to time with your illness MND.

    It is just one year this month since my dear sister was taken from us having been diognised with MND just 22 months prior to her death.

    I also lost an elder sister three years prior she also hac MND and had lasted around five years before passing away.

    So you see it can be in families, test have shown that there is a 27% chance that it could be in our genes.

    My elder sister was 68 and the second sister was 70 at the time of their deaths. I am 60 so I guess I will always have it the back of my mind that I could be next.

    You are right to be using a wheelchair as this will help you conserve your energy for doing the other things you enjoy, do look at the feeding tube in the stomach earlier rather than later, the reason I say this is both of my sisters left it to late (on advise of the medical profession) the other reason is that your health will be better at this time and it won't become such a major operation.

    You can still eat other foods but because this will become difficult the tube acts a little bit like the wheelchair conserves your energy.

    I only wish I had had you to interact with while my sisters were alive, there seems to be so little known about MND that often the help is a long time coming. Neither of my sisters had the wheelchair and it was only very late in the piece with my second sister that the suggestion was made it was too late.

    I hope these words of advice are taken in the good faith that I offer them, I loved and cared for my sisters and know that I could of done with a informative voice to guide me and prepare me for the latter days.

    You know what they say 'hindsight' is a valuable tool.

    All the very best with your remaining years and remember if you need help ask and continue to ask till you get what you need.


    By Anonymous Anonymous, At 2:02 PM  

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