Pride, at what cost..

What is the major thing that we all take for granted. LIFE is what it is. It is like a children’s playground with swings and slides, turntables and ropes. All the ups and downs of playing on swings etc is what made life go round for us.
We have all taken a tumble at some stage from such equipment and brushed it off as no consequence, but, like a turntable, what goes round comes round for some of us.
And so it is with ALS/MND. There are those of us who are able to brush it to one side and get on with life as best we can but when the slide comes down too fast and hard then that is where life becomes so much harder to bear and our pride takes a fall.
We cope with the everyday tasks of living but at a price. Pride is the thing that most people find difficult when it affects them personally. And with pride there is also dignity. If we can handle these two aspects of life then we are coping alright.
The other thing to remember is that with pride there is also age. Pride and age go hand in hand and it is a hard ask when you have to look to those around you, people you have known all your life, and say to them, “can you please cut my meat” or “ I need to go to the toilet” or the 1001 other things you have to do, to maintain and keep in place your pride, and know that age is no barrier in this game of life.
With ALS/MND there is no barrier. It can strike at any time or any place. Age and sex are now of no consequence ( people are now being diagnosed a lot younger) and it makes no difference to your community standing or place in society.
We are a diverse race of people and every day it seems like there is a new illness to try and combat and we do the best we can with what we have. But what we have is not enough in some cases and this applies especially to those with ALS/MND…
As far as I am concerned I am taking it in my stride ( is that putting one foot in front of the other he says with much laughter, oh how I wish I could.) and though the daily task of living is getting ever so slightly more difficult I am not letting the negative aspects of my condition get me down. I cannot stress enough that anyone with ALS/MND try, as hard as they can, to hold onto life and pride with both hands ( and I know that this will be difficult with a lot of people ) and let the world know that you are there through being positive and enjoying life with family and friends.
Jan and I are now looking at ways of bringing attention to Motor Neurone Disease. Off making aware that there are a growing number of people in New Zealand being diagnosed almost daily with this disease and of finding ways to help or get help where ever we can. ……..

Photos

This is something that I have not done in years.. Jan and I out for another walk and we took our kites with us......

Two shots of a sunset late one night a month or so ago....

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….

Moving house

On September 28th my quality of life changed when I and Jan moved into another house. When you can not walk and your legs do not want to bend at the knees the bath as shown in the photo at left was rapidly turning into a nightmare for me.


Having tried to get a house through a Government Agency with a disability shower and after many months of nothing happening we decided to go public with our story.





Photo of new 'Disability shower'...

Being bathed now is a breeze and the feeling of freedom in the bathroom is really great. Having someone who will come in five days a week ( at this stage ) and take from me the daily stress and hassle of bathing and give to me a new meaning to the 'Quality of life' has to be felt to be believed.
There is no loss of dignity in a situation like this and you are treated with the up most respect. Having being able up until a couple of months ago to do my own bathing I took on board the fact that there are agencies who will provide all the care and attention to your own personal care..

UPDATE...

Over the last few weeks have been having 'breathing' problems, ie, trying to take in extra gulps of air. To help ease this I am taking a 'diluted' mixture of Morphine. Walking with the 'Gutter Walker' is getting slower. Have also been oked to have a feeding tube fitted ( PEG ) sometime in the next month or so. I may never use it but it will be there in case I do.



A bit of trivia.....



A collection of teddy bears is called 'A Hug" and this is part of our extended family...
A person who collects teddy bears is called a Arctophilist ( Arctophile )