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

Friday, October 19, 2007

Kick in the teeth

Life for me keeps on going on despite having breathing problems and loosing the ability to walk unaided. Now in a situation where we ( Jan and I ) can get out side and go for walks, me in my ‘Pronto’ wheelchair and Jan either walking or riding her bike, where bathing is now no longer a chore and the everyday aspects of living in general is looking good.
19/10/07
With snow on the mountain range in the background and a warm breeze blowing against our faces we took advantage of a very nice morning to get out for a walk in the sunlight. There is nothing better than feeling the fresh air and admiring all the flowering trees and listening to the bird life. We also took time out this afternoon to sit in the sun, really great.
It is now one year and ten months since being diagnosed and I will be the first one to admit that my physical condition has gone downhill, but, and I stress here, that condition has not stopped me from being who I am and enjoying life to the fullest. I find that the small of my back gets very sore and really feel it when I try to get into or out of a chair/lazy-boy.
Sure, I have the operation for having a ‘PEG’ fitted to enable me to supplement my food intake coming up and I don’t see that not happening. We all have to eat and drink in one way or another. And we are still finding out what I can and can not eat.
I am still going to ‘Day Care’ at the Hospice and enjoying it. I have discovered that I have an artistic ability through taking part in Day Care activities even with hands that have a mind of their own. Trying to paint a flower with the brush wandering all over the place tends to make one frustrated but with perseverance and a good deal of determination I won out.
To anyone wanting a good read there is a book called ‘Loosing my voice’ written by a woman named Barbara Williams ( elder daughter of the late Sir Robert Muldoon ) who has ALS/MND. I am about halfway through it and find it very well done. Her story gives an insight into the everyday problems of someone with this disease and how they as an individual deal with it. I admire her spirit. Go for it Barbara.....
What do I do with my day.. I spend a lot more time on my lazy-boy chair and will often watch TV and try to spend at least part of the day on my lap-top. There was a time when I would have been on the computer for hours on end doing research into our family trees but life has changed that option for me as I find it more and more difficult to use the mouse.
Using the laptop will be made easier for me soon but more on that in a few weeks.
I find that as the body weakens it needs more rest. The amount of energy required to do even the most simple action like crossing the room with my walking frame demands that I either sit or lie down.
I no longer try to make cups of coffee or tea, just too much effort. The only think I really find hard to accept is the fact that I have to sit back and watch my wife do everything in and around the house as I no longer have the strength to help, in any way… that is REALLY HARD.
My only strength is staying alive and being a part of this family. At the end of the day I can still laugh at ‘life’ and say, “ Hey, is that the best you can do. I need to be around a good while longer for all those people out there in this crazy world of ours who require, if not a physical help, but help with dealing with their own form of ALS/MND in a one to one situation via the internet”.
So, I take each and every day as a bonus and give of my body with both hands my heart and soul to all of you with ALS/MND and hope that my being positive will help you to hold on to life and give ALS/MND a good kick in the teeth.


I try not to let my condition hinder me in so far as enjoying what I have left….

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