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

Wednesday, April 25, 2007

Never Give Up

ALS/MND….To most people it is an enigma. A problem that they would rather not know about and if they do know to try and put it to one side to deal with later.
But later, for us, just isn’t on. We would like people of all ages, to know that simplicity in life, for us, can be complicated by the simple fact that not enough people understand just what is involved in staying one step ahead in this game of life. And that is also a problem because we can only take a few steps before hitting the road block.
And that block is life itself. It would be almost sacrosanct to say that anyone with our condition could demand the support that they need to keep ahead but it doesn’t work that way. Support of any kind is available if you need it, you do not have to demand, just ask. Most countries can provide the aids ( like wheelchairs) and medication if needed ). And it is at this time that I would like to thank on behalf of ALS/MND sufferers worldwide all of those people who have given of themselves to be the support that we need and ask for and in particular the ’ALS Family Support Group of Ohio, Inc’. Phyllis Van-Horn is in charge of this group. They do a fantastic job and are just one of the many groups who mean so much to us. ( not forgetting that I live in NZ ) THANK YOU …. Photo of me joining in at the 'Hospice'...

Another kind of support is that run by our local Hospice, a Day Care Centre for those living with a terminal illness. . Including MND. Approx. three hours one day a week. A car is sent to pick you up ( I live about a half hours drive from the Hospice ) and takes you back home again. What a great idea. Activities include making cards, painting, playing cards for those so inclined, talking and on occasion listening to people speaking about some of life's issues . Morning tea and lunch are provided.
The title of my blog is ‘Never Give Up’ and that is what I try to live by. Never Give Up on life, how ever short or long it may be or on those who stand behind ( and in front ) of you. Never Give Up hope that somewhere, sometime, there will be a cure for us. To give up is not an option for me and I stand ( again no pun intended ) strong in my resolve to be resolute and look to the future for what lies ahead of me.
My body may be weakening but my heart and the hearts of those who know me keep me going. They include my wife, Jan ,and our family, my very dear friend Moira-Anne and the group of people who work in the Lower Hutt Hospital Rehab. And I mustn’t forget Helen from the NZ MND Association.
Someone said to me the other day that life for me must be a ‘Bummer’ and in this instance I must agree. But on the other hand, regardless of the fact that I have MND I can look out into this world of ours and know that without a shadow of a doubt that there are people, children included, in a far worse condition than I and what have I got to complain about. Nothing much. Just a disease that is taking our world by storm. The numbers are growing more every year and one day, just maybe, ALS/MND will be on the list of the 10 most Neurological disorders in the world. It should be on top of the list in my book………….
In NZ we have purple rubber bracelets with the words ‘Never Give Up’ written on them. America have the same only the colour is red. And we also have a flower as our MND symbol , the ‘Cornflower’……

Saturday, April 14, 2007

Breathing & the colour of life.

The ability to breathe is an action that is common to all life on this planet. In the sky and in the sea. In and on the ground. It is something that we all take for granted. Anything that is alive, be it a piece of microscopic plankton in the depth of our oceans or a giant Condor flying over the Andes . .
Some species of life may be with us for many hundreds of years and others but for a few days. The action of breathing may vary depending on the conditions that the subject lives in but it all comes down to one thing…to live we have to breathe, there is no way out of that situation. It is the one most singular condition that controls all of life and we have no choice but to abide by this aspect of our bodies environment. We come into the world and the very first thing we do is to use our lungs to breathe, it is also the last action of our lungs.
But at some stage of our life’s ( you and I ) the act of breathing is compromised and our bodies integrity, our state of health, becomes of paramount importance . Breathing …Such a simple function of our body, breathe in and breathe out. We have contracted ALS/MND and usually in the later stages of this disease the action of breathing becomes harder as our lungs, due to muscle destruction caused by our condition, take the road of least resistance and finely cease to work…….
There are medical implements that anybody with breathing difficulties can use to increase the amount of oxygen taken in by ones body and in most cases of a person with a breathing disability that is sufficient, but with ALS/MND it is the bodies inability to generate enough oxygen, even with the help of artificial means that will finely bring peace to the person concerned.
But to help us with our breathing we must preserve the world around us. Not only for those who suffer with breathing problems but for all of the species who share this world with us. There are too few forests left on this planet of ours and the more we cut down and burn means less oxygen being produced. It is a sad fact of life that mankind has to expand his horizons but at what cost to the human population and all other species when he cuts down the one thing that will help him survive, our many Rain forests .
In the long run it wont be all the illnesses we suffer that will wipe us out ( ALS/MND included ) but our overall stupidity in managing the resources of our planet…
So when someone passes on might it not be a nice idea to plant a tree. It will not help the person who has gone but the thought is there.
Green is the colour of life.. let us keep it as long as we can.

Tuesday, April 10, 2007

Independence and ALS/MND

Disability and independence go hand in hand. They are the milestones of ones life and the indicators of how we are feeling. To be independent at a time when you are usually in good health is the yardstick we use to measure the welfare of our bodies.
But when that yardstick has been broken with a disability like ALS/MND then we as individuals have to reconsider our independence in the wake of ever growing pressure from the world around us. To come to realize that we, as people with a condition that can cause stress, anxiety, inability to do most things, frustration, lack of sleep, cry and laugh and a whole host of other every day actions then we must take the upper hand and declare to the world that we can act for ourselves and become independent in our own rights. It means that we have to restructure the way that we live and think and
off course this action involves not only yourself but those around you, family, friends, caregivers. To be involved with someone who has ALS/MND, depending on the degree of disability will at times take more than just a few minutes of your time and your own ability to react, one to one with the person concerned.
And it is quite often that closeness, that feeling of satisfaction and knowing that the person with the disability is trying his or her best to not only help you but to help themselves in a situation that is not of their asking.
For me to be independent means that I can still do most things for myself, like having a bath or spreading a sandwich, use my laptop for contact, dress myself ( pulling on socks can take a while ), make a cup of coffee and get the milk from the fridge using my walking frame ( What a wonderful asset ) Even stand against the kitchen bench and wash the dishes. That’s fun..
But that independence is slowly being eroded away and I will accept help as and when it is needed. Having said all that the one action I really enjoy is getting out in my power chair. BOY….the feeling of freedom and independence is a real boost to ones confidence. My ability to go where I want to go, within reason, to meet people like myself who are also out in their chairs, to get to go out with your spouse ( in my case she is riding a bike ) and enjoy the day. To go into town or visit the local shops and to be able to buy an ice cream, these are all actions that indicate to people your independence. A visual indication if you like that you are still out there, still enjoying life as much as you can . Still meeting the world head on and knowing that there are others like you doing the same.
And I would like to say to those others.. Keep on keeping on with what you are doing and show people that those with a disability like ALS/MND can be a part of the community, can take responsibility for their own actions and most of all be proud of what they are doing..


Look for your own inner strength and bring it out into the world…

Saturday, April 07, 2007

Easter eggs......

A HISTORY OF EASTER and the EASTER EGG

Each and every one of us as we grow, develop, depending on our creed and race, the standards and regulations that control our everyday life.
We learn to walk and play, think for ourselves, marry and have families and generally go through life taking each day as it comes. Religion also plays a big part in our upbringing and many people carry their faith like a torch and it is at this time of year that many practice that faith.
Easter is in most cultures celebrated by church services and with a holiday. But, we also have another tradition that is very popular and that is the giving of Easter eggs. You can go into any big Supermarket anywhere in the world and be faced with many different types of chocolate eggs. The choice is endless and mind blowing.
Children in particular love this time of receiving presents and many families make a game out of finding where mum and dad have hidden these goodies. But where and when did the first Easter egg appear.

Article that follows is from the internet...

Delve into the history and origins of the Christian festival of Easter and you come up with a few surprises. For instance, Easter eggs do not owe their origins to Christianity and originally the festival of Easter itself had nothing to do with Christianity either. A closer look at the history of both Easter and the Easter Egg reveals a much earlier association with pagan ritual and in particular, the pagan rites of spring, dating back into pre history.
For us, the ancient rites celebrating the Spring Equinox are most obviously associated with the mysterious Druids and places like Stone Henge, but most ancient races around the world had similar spring festivals to celebrate the rebirth of the year. The Egg, as a symbol of fertility and re-birth, has been associated with these rites from the earliest times.
The Christian Festival Of Easter
In fact, the festival of Easter is a classic example of the early Christian church adapting an existing pagan ritual to suit their own purposes. The Saxon spring festival of Eostre, was named for their goddess of dawn, and when they came to Britain in about the 5th century AD, the festival came with them along with re-birth and fertility rituals involving eggs, chicks and rabbits. When the Saxons converted to Christianity and started to celebrate the death and the resurrection of Christ, it coincided with Eostre, so that's what the early church called the celebration, Eostre or Easter in modern English.
The actual date that Easter falls on every year is governed by a fairly complex calculation related to the Spring Equinox. The actual formula is: The first Sunday after the first full moon following the Spring Equinox is Easter Sunday or Easter Day. This formula was set by Egyptian astronomers in Alexandra in 235ad, and calculated using the same method as the Jews have traditionally used to calculate the feast of the Passover, which occurred at about the same time as the crucifixion.
Easter Eggs
As well as adopting the festival of Eostre, the Egg, representing fertility and re-birth in pagan times, was also adopted as part of the Christian Easter festival and it came to represent the 'resurrection' or re-birth of Christ after the crucifixion and some believe it is a symbol of the the stone blocking the Sepulchre being 'rolled' away.
In the UK and Europe, the earliest
Easter eggs were painted and decorated hen, duck or goose eggs, a practice still carried on in parts of the world today. As time went by, artificial eggs were made and by the end of the 17th century, manufactured eggs were available for purchase at Easter, for giving as Easter gifts and presents.
Easter eggs continued to evolve through the 18th and into the 19th Century, with hollow cardboard Easter eggs filled with Easter gifts and sumptuously decorated, culminating with the fabulous Faberge Eggs. Encrusted with jewels, they were made for the Czar's of Russia by Carl Faberge, a French jeweller. Surely these were the 'ultimate'
Easter gift, to buy even a small one now would make you poorer by several millions of pounds.
The Chocolate Easter Egg
It was at about this time (early 1800's) that the first
chocolate Easter egg appeared in Germany and France and soon spread to the rest of Europe and beyond. The first chocolate eggs were solid soon followed by hollow eggs. Although making hollow eggs at that time was no mean feat, because the easily worked chocolate we use today didn't exist then, they had to use a paste made from ground roasted Cacao beans.
By the turn of the 19th Century, the discovery of the modern chocolate making process and improved mass manufacturing methods meant that the Chocolate Easter Egg was fast becoming the Easter Gift of choice in the UK and parts of Europe, and by the 1960's it was well established worldwide.


So there we have it....I would like to take this moment in time to wish family and friends, here and on the internet a very Happy Easter......

And I would also like to dedicate this entry to the memory of my parents and my sister, Staff Sister Rosemary Coutts, Wellington Hospital who passed away Easter weekend 1969, age 23.

Wednesday, April 04, 2007

Coming of age

On the 24th March I came of age. Well, the age that small children think..Gee, thats old. You are only as old as you think you are. On the following day Jan held a surprise lunch for me and it was a real emotional roller coaster of a day. A brother whom I had not seen for 12 years was the icing on the cake. A really great time for me and for those who had come to help celebrate this very special moment in my life. I would like to take this time to thank you all as I realize that a lot of planing had gone into this day. To most of us reaching 65 years of age is just another day but to family and friends it is a time for them to show how much they love and respect you. A time to have grandchildren help you unwrap presents and to see the looks on their faces. A time for those very important family photos. A time to look back at what you have accomplished in your life and to share those moments with family and friends. It becomes after all not 'just another day' but one that people can talk about and a day to enjoy. The cake of course was a chocolate one full of yummy cream and simply Delicious to eat. The weather was kind to us and everyone enjoyed their meal.
Jan had booked us into a 'Carvery" which was really great as everyone could just help themselves. I like to think also that a day like this, if recorded in some way, lends itself to preserving not only your thoughts and feelings on the day but to all the thoughts and feelings of those who know you.
It is another step up ( or is it down ) the ladder of life and a time to enjoy what you have.....
Thank you all for a great day........