How Do I Feel....

What makes us tick...
Our bodies are a strange mixture of complex organism's, nerves and muscles all doing what they are supposed to do. All governed by our brain. From birth we learn to talk and think, formulate ideas and put them into action. We contemplate what could be and learn to accept the reality of everyday life.
But when the human body begins to break down, what then. How do you express in words the feelings and thoughts that flow through your body twenty four hours a day. You have ALS/MND and plenty of time to ponder just what is going to happen. You eat, sleep and breath on your bodies assumption that things will come right. But that's not to be.
People react in many different ways to the knowledge that they have an incurable disease but its in the way that you do it which makes all the difference. There are some , regardless of age or sex who do not and will not accept that they have this condition. They may be young, married and have small children. What can you (I) do to help them. You can not. But, you can be there for them in the advent that help at last is needed.
You will find that most people with MND have put their priorities and their life's in order. They draw around them a strong support group of people, family and professionals, and even have events like "Walk to 'D' Feet" ALS/MND. These events are very popular in America ,England and Australia. I would like to see such an event happening here in New Zealand.
I have reacted to the knowledge that MND is here to stay, for me, and is a condition of my life now. There are many changes that I and my family have had to face but despite the fact that my life and everything connected to it has changed, I AM STILL ME.

I am still the same inside this shell of flesh, blood and bone. The physical aspect of my life has changed but I can still feel pain, express delight and happiness, taste and see, go out with friends and family and generally enjoy life. In the scheme of things I am the same as everybody else but have been put onto a different path.
We have the presumption that the world will keep on turning regardless of how we feel. That Nature will realize her mistake and put us back on the straight and narrow path that we walk ( if we only could) along but in this instance she has made a blunder.
Within my self I can still do the 101 things I used to do but the reality of it all kicks in and you ( I ) learn to change the order of everyday life , not once but every single day.
We contemplate life and all of its frailties, our illnesses, our love and hatred of our bodies and realize that we are but just one person in a sea of many. But one person, one voice can raise, given the right conditions, a consciousness, an awareness of Motor Neurone Disease in the mind's of the human race and just maybe ,we, you and I can come out on top .
WE CAN BUT DREAM....

To have or not to have...

That indeed is the question.....

We are a resilient race of people, strong in out fortitude and our determination in the face of adversity to stay alive and healthy despite everything that is thrown at us.
There need not be a lack of food or hygiene for you to catch MND. It does not matter in what state of health you are in or what age you are. We like to believe that we are immune to all of the illness that has plagued our world but the human body is infallible.
We are like dandelion seeds floating in the breeze, carefree and and unmindful of where we land, but land we do. And if you are lucky you strike a good patch of soil, rich and free of bugs and grow up to become strong and healthy and have a good life.
But, on the other hand you may land in soil that is barren, infertile and full of bugs and if you grow at all, find that you have become like the soil you landed in.
But who is to say that either of these situations lends itself to MND. The truth is we don't know and despite all the research going on around the world it may be a very long time before we find out what the cause of MND is. ( if at all )
Update on me....
I like to think that I have a strength of body and firmness of mind and that I will live on for quiet a few more years yet but know that the average life span from diagnosis is fourteen months. I was given two & a half years from the 15/12/05 but am determent that I shall be around a little bit longer than that. ( if my body lets me ).
Regardless of the fact that I seem to be progressing slowly ( I think ) and with my hands ( mainly my right ) cramping up at inopportune moments ( ie, eating in a restaurant ),legs packing up and a few more twitches here and there I am enjoying life.
Last week I was measured up for a power wheelchair which I may have before Christmas. I now have a Laptop/notebook ,never had one before, enjoy my food ( eat ice cream and chocolate like its going out of fashion ) love sweets and drink numerous cups of coffee during the day.
I spend a lot of time thinking about what to say in these entries in my blog and throughout remain positive. For someone with MND or any disability, being positive is one of the main drives in ones makeup and it is that which will keep me going through the years that I have left, however many there are.
I look at myself in the mirror every night and say..."Well, Robert old boy, tomorrow is another day and I will stride ( no pun intended ) out into this world that is being torn apart with wars, hunger, strife and pain and in my little part of it enjoy what I have, with friends and family.
I did not want to have Motor Neurone Disease but have it I do....

Friendship on the web..

This is just to say thanks to all the people that I have met on the Internet and who have read my blog. Friendship can be made and enlarged on when you share a common bond like MND/ALS and when you can 'talk' to someone in real time and have a joke or share stories with each other.
I have met people from all over the world via the Internet and it is the companionship that links us all together.
I would also like to say at this time a special big thanks to Moira-Anne for being the person she is. We only live a couple of minutes away from each by car but I consider her to be a true friend and when you have a like ailment it draws you closer together, like it has with all of us.
The chat room that we go into is like a common room and is a great way to 'just let it all out'. No matter what part of the world you are in we are all as one. Friendship counts..

A year further on.....MY LEGS

On the 15th next month it will have been a year since being diagnosed with MND. Where did it all begin....
These last 11+ months have been, shall I say, interesting. The only outward sign of anything wrong with me is my walking. The visions I have when I think back over the last 60+ years of my life.....
Walking is something that we all take for granted. I mean to say that it is a basic foundation of life that we are able to do this, but when that right, that ability to do so is taken from you ones hope's and desires, ones ambitions in life to do everything that is associated with walking is removed all that is left are your dreams and memories of happier times.
I have walked in Australia, England and Scotland and many parts of Europe and Africa & Japan .....
Walking is such an everyday part of life and ones expectations that your legs will be with you for many years are just that...You do not expect to be with out them. They are so much of what and who you are...
Your parents watch as you take those first tentative steps along the path of life. They watch as you learn to walk, to run and ride, swim and climb and all the every day activities that go with using those wonderful appendages called legs.
My legs have taken me through the years of childhood to adulthood, and they have served me well and when I finely loose the ability to walk I will accept that decision of my body and look forward to another dimension of life. A life where my legs are replaced with a wheelchair...
And what are we going to do on the 15th next month...we will have a party to celebrate the first year of my extended life, of my still being with family and friends...WHY NOT indeed

LEG....either of the two lower limbs in humans, or any similar or analogous structure in animals that is used for locomotion or support... or what I would call a multi-functional device that we use and clothe in all manner of garments.

A New Home......

Well,here we are in our rental house with the only stairs at the front door and three at the back. Moved in about 4 days ago and still looking for items in boxes.
We plan to be here until the early New Year then look for a permanent place. And we have our son John and Tania here for a few days as well and enjoying their company.

It is now almost two weeks since we moved into here and we are still looking into boxes for items that we have no idea where they are. The joys of moving house....John and Tania have gone back to New Plymouth and we will see them again on the 23 December with the three children. They will be with us for Xmas and then they will be getting married on the 30th December. We are all looking forward to that very much....