The tree of life....

We are but twigs on the tree of life..many thousands of twigs on many different tree’s. Tree’s grow and many of them flower and from those flowers come new tree’s. But no tree is perfect and so on occasion a flower will become deformed or sick.
We, you and I are like those flowers. We are healthy and with that health comes hope, aspirations and the longing for a long life. But our health does not stay with us and so on occasion ( like a flower) we become sick.
It is a sickness that we do not ask for. For some of us it is a short illness but for many may last beyond the point of reasoning. ALS/MND is if you like the secateurs to rid us of this illness. The flower may be disposed of but the twig remains, hanging onto what ever little flow of life may be in its system.
But, eventually, like the flower the twig is deprived of its life giving substance and is cut off.
If only we could halt the transformation of a healthy body into one containing the illness called Motor Neurone Disease but we do not have that ability to do so. It affects us in so many ways. To the average person we look (in the early stages) perfectly normal but that normality does not stay with us. With some of us it is the walking (like me) that is first noticeable . Then there is the cramping and twitching of various parts of the body, the speech and the eating of food.
Everyday life becomes more difficult and with it comes the frustrations and the anger, the tears and the laughter that goes with ALS/MND. It is a time of learning for all concerned. For the individual with the illness it is a case of having to change ones way of life but for family members may be a time to realize that what goes round comes round. ‘There but for the grace of God go I.’ Quality of life becomes important…
It is the little things that we notice first, the odd fall, the inability to climb a step or steps. Holding onto a knife or fork or trying to wrap ones hand round a cup. So many things that we take for granted. Just the simple act of getting into a car, blowing ones nose or even buttering a piece of bread. Brushing ones hair or cleaning your teeth . Even just turning over in bed. All of these actions affect our life more than most people realize and as our bodies progress down and into the trunk of the tree of life it becomes a time of reflection , a time to look back at how many flowers on our tree have wilted and become diseased but to realize also that new flowers will replace those that have gone.
Flowers that will become in time stronger and disease resistant. And it is that hope that so many off us long for. To be normal is not asking for much but to you and I what is normal any more. I will continue on this path that I have been put on but I will knock down for as long as I can everything that gets in my way.
My tree of life will and has reproduced ( I have grandchildren) and it is my hope for them that any flowers that grow from this union will be healthy and have a life free from the restrictions of ALS/MND….
If a tree is watered, loved and nurtured it will last many years, twigs and all…………

The other structure to look out for is an independent upright support, to help strengthen and keep our tree’s strong and firmly attached to their life giving ground. We need that support to stop us from falling over and damaging our branches and twigs. My support is my family and the many people out there who will push upright and tie back the numerous twigs making up my tree of life……
Watered, Loved and Nurtured…that’s all we need……to keep our tree’s growing….

A Day Care visit...

Today was my first visit to the ‘Day Care’ centre at Te Omanga Hospice. After we had lunch, tables were cleared up and all the other Day Care patients went off home but Moira-Anne and I were asked to stay and talk to about 30 volunteers about our condition. I think that the general thinking with everyone present as they listened to us talking was that we were very brave…., not so. Bravery does not come into the equation . I (we) can not change what has happened to us. It is a fact of life, a fact that we as individuals have to live with. We are being successful shall I say, in that both of us have our means of contact with persons of like condition and it is that contact that is very important to us. It is helping to keep us aware, if you like ,of what is happening in other parts of the world about MND. I think we may have cleared up a few misconceptions of what MND is about and I hope that the volunteers have gone away happy in their new found knowledge of a medical condition that is slowly taking the world by storm.
To any of them who may read this it was a privilege, for me at any rate, to talk to you and I thank you for letting me do that.
And thank you to all the staff today for making my first time with you so pleasant.

Life goes on...Be positive.

The human race is made up of two components, male and female. And Motor Neurone Disease does not take that statistic into consideration when she indiscriminately goes into action and injects herself into one or the other of us. Also the age factor has been affected in that it used to be people of 50 years and over coming down with ALS/MND. Now people in their late 20’s are beginning to show up in all parts of the world. And that is far too young to have a disease like ALS/MND. FAR TOO YOUNG.
Another interesting fact that is showing up is how many sports people are becoming infected with this condition. Why ? … I have never been a sports person but I also have never been a couch potato so how do we take that into consideration.
What does one have to do to become eligible to join our elite organization because once you are in there is only one way out and we all know what that is.
There are not enough people doing research into the causes of ALS/MND, at least in New Zealand and I think it will be many years before they find a cure, if at all.
But we all have to be positive in our collective believe that a cure will be found.

So life goes on and the world continues on its path through space and we, the human race struggle to come to grips with our aliments, diseases and wait for medical science to come to our aid.
And I like to think that being positive is probably one of the best actions that any of us can do. It certainly can’t do any harm. Make contact with other sufferers of ALS/MND through the internet and regardless of age or sex talk with each other about what you have and you will come to realize ( as I have ) that there are many souls out there just waiting for that contact. And if through talking ( via chat rooms or email ) you find someone in a like situation, then you will know that there are people suffering with this condition, who are willing to share their lives with you, and that you need not be alone .
When you look at it, via the internet, the world is very small and you soon realize that help, mental, physical and emotional is only a keystroke away and that someone, somewhere will be there for you.

You have Motor Neurone Disease ..the intricacies and complexity of what we have make the study of our condition really difficult in the long run. No two people are the same and because the break-down of muscle tissue varies so much in each individual that alone can either prolong or shorten ones life.
But, life goes on.. We have to concede that ALS/MND is here to stay and the reality of that situation, depending on your point of view, is that you are in for the duration, be it one month or two, one year or twenty. We are at the best of times a tenacious race of people but if anyone who has been diagnosed with ALS/MND can stand up (no pun intended ) and link up with other sufferers of this disease, then we are supporting each other, and it is that support, that positive altitude that will carry us through the difficult times ahead.
You have ALS/MND but with a positive attitude you can help

That moment in time...

How do you define a condition that afflicts all of mankind. No one is spared and it is the single biggest cause of distress and heartache. We cling onto life with both hands but in the end we will loose out.
Most people go through life without the prior knowledge of when they will pass on to the other side but there are people who, if you like , have been given a window into the future. They have a time frame to work on and family and friends can prepare for that inevitable moment.
I am of course talking about death. In today's society it is a moment in time that encompasses all of someone’s life. We celebrate that person and everything that he or she has done. It is now a time not for grief, sadness or the mourning of a loved one. If the person has lived a long life and has at some stage been afflicted with a life threatening disability it is then a time of happy relief knowing that he or she is no longer in pain, no longer struggling with the everyday chore of just living. No longer having to endure those moments when the body refuses to work the way it used too.
Quality of life is always important to someone with a terminal illness and it is that quality that we try to hang onto. With that quality of life comes self respect and dignity.
Respect not only for yourself but for all those people in your life..spouse or partner, parents, children and all those who have come forward to look after and care for you. And it is the dignity with which you as a person are treated that people look on.
In the past the event of death has always been looked on as a time to drag out all the black clothes and the playing of sombre music. Not anymore.
It is now, in the modern world, a time for colour and bright music. Even the humble casket/coffin has evolved in to an item full of colour and dare I say it, humour. A time to look back and enjoy the life of the dearly departed. It is as I said a time to celebrate.
Consider that we humans are but pawns on the chest board of life and every now and then a piece falls of that board. Those pieces are you and I. When my time comes and it surely will, sooner than later, I would wish that my family, my friends and anybody who knew me send me off with a bang. Drink, eat, sing and be merry because I would not want it any other way…………..
BUT…I intend to be here for a while yet so, just sit back, relax, have a drink or two and I will enjoy the life that I have until my chest piece falls of that board…

Lifestyle...living with Motor Neurone Disease

How do you live with MND. How do you cope with the everyday chore of trying to get ones body to do what you would like it to do. Every new day is an adventure into life, a life where nothing is normal any more and for you to realize that normality has gone out the door.
For me it is the fact that just to wash the dishes is a problem in that my balance will not allow me to stand upright and away from the sink. As long as I lean against it I am OK. To even grasp what ever is lying in the sink with hands that cramp up can also take up time and it is amazing the amount of energy that is used by doing this everyday task.
We humans I'm afraid take so many things for granted...walking, eating, dressing, bathing. They are all operations where someone with ALS/MND has no choice but to find alternative ways of doing things. If not by yourself then with the help of support people.
If you are a woman and find that your arms and hands will no longer cooperate with the act of putting on your bra you most likely find it easier not to wear one and let it all hang out, so to speak. Both sexes find it easier to do away with buttons and wear garments that are loose fitting, ie, sweatshirts and track pants. Shoes can also be a problem but when you have to wear a splint (as I do on one leg) then they have to be as comfortable as possible.
But our biggest enemy is energy..even the simple act of riding your power chair can take it out of you. Moving from one end of the house to the other, cutting one's meat when eating, getting on and off the loo. These are all problems that are surmountable but with effort.
Without energy the body slows down, becomes sluggish and everything is looked on as something that you would rather not do. With AL/MND then, the problem becomes twofold. If you have the willpower and the drive to try and beat your bodies condition and to make the most out of a bad situation then you are halfway to making your living/lifestyle more comfortable.
I am at the stage where as yet I do not need help with the everyday tasks of living but I know that will change. I will accept and acknowledge that fact and get on with life as best I can. But as I have stressed in other entries on my blog I find it helps to be positive...this can also make living with ALS/MND more acceptable, not only for you but for those around you.
And if you have access to a computer (and if you are reading this then you do ) then there are support groups all over the world that you can tap into. Chat rooms are also a great means of helping and dealing with your condition. You will find that there are people out there who have no one in their everyday life to talk to and a chat room where all the people have the same condition as yourself is a great boost not only for the mental aspect but the physical as well. We are a community of men and women of all races and religions from every country on the planet and the computer is our main means of communication.
So a lifestyle where you can be yourself, with decreasing limitations and acknowledging the fact you have ALS/MND can be had. But also knowing that you are not alone in this world of ours is probably the biggest factor and that help is only a keypad away. Enjoy life as best you can ( as I am ) and talk to people..talking to someone can alter your lifestyle for the better......for a while.