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

Tuesday, May 29, 2007

Balance....

Stability…A large Ocean Liner is steaming through the waves of a storm at sea. The passengers onboard are content in the knowledge that the Liner is being controlled by commands from the brain of the Liner on the bridge. . Their world at this moment in time is secure.
They know that there is no danger of floundering as the liner has stabilisers and as long as they do the job that they been designed for then everyone can keep on enjoying themselves and life will go on as before. . BUT………
On the bridge a signal goes out via the circuits that run the length of the Liner to one of the stabilisers,. The unknown happens and there is a short circuit, the stabiliser drops slightly and the stability of the liner has been compromised.
People onboard notice that they have difficulty walking upright, that their balance is now uncertain. With the lost of stability there is also the fear of falling, of being no longer in control of their bodies.
Remove from any tall structure, like a skyscraper, the steel framework. What happens.. it will collapse. Remove from us the muscle and tendons of our legs. The scenario of the Liner and building is the same…
Stability is part of the framework of our bodies. Without it we become one of uncertain quality, a framework that has weakened to the extent that we know there is no turning back.
If you know of someone with a walking disability and you are reading this and you can correlate the above scenarios then you are halfway there to understanding just what I and thousands like me are going through every day.
You do not appreciate the ability to stand upright ( without support ) until it is taken from you. When that happens you realize the appendages that extend from your body, not only the legs but the arms as well, are going to get weaker and their mass ( muscle ) is going to disappear over time, then you know that the loss, any loss, of body function is going to affect not only the physical aspect of your relationship with this disease but the mental side of it as well.
Stability and balance… They are a marriage of nature.. Remove or damage one of them and you have a relationship that can not work.
ALS/MND is made up of many different components. The above are just two of them.


We are all different with this disease. Yet we are all the same, we are human…


Quote…..”Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are”
‘Bernice Johnson Reagon’

Friday, May 25, 2007

Togetherness......

We are what we are and there is no way that we can change that fact of life. I am the essence of my parents and my children are the essence of Jan and I. It is the continuation of all families and of all generations to come.
And it is that closeness of family that holds us together, holds me upright and leads the way along this path of life. I have travelled along this path now for almost seventeen months and have watched, with some trepidation, as new family members are bought into this world.
What will they find as they progress through life in this world of ours. Will they become disillusioned. Will they become leaders in their communities or will they take whatever comes their way. It is a tough world today and getting tougher by the minute.
And what is it that drives the human race to keep going further forward in leaps and bounds. To make decisions that may or may not better Mans existence, to come up with new ways of improving, in general, the way that we, as a race, live.
It is the medical side of this story that we, you and I, depend on. To find out, if we can, what makes up our genetic background. Just where along my journey in the last 65 years did my genes do a back flip and decide that I as an individual should have an extra page to add to my ‘Book of life‘.
Was it in fact my genes or another factor that we still don’t know about. Will we in fact ever find out just what it is that makes some of us ’special’. And I use the expression ‘special’ in the loosest sense of the word. Of what use is it when you are ‘given’ a disability that will in the long run remove from you the right to live as you choose. A disability that brings with it hardships that you wouldn’t want to wish on anyone.
But it is also that hardship that brings us, you and I, closer together, to bond in a way that most people wouldn’t understand. We need the companionship of other people like us. It is through the Internet that we get the comradeship of friendship and in groups of volunteers that give of their time, their own brand of togetherness, fighting to give all people with our condition, a life free of the hardship I speak off.
A life that has quality, dignity, peace and love.


‘Quote’…When you get into a tight place and everything goes against you till it seems as though you cannot hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.
‘Harriet Beecher Stowe’ (1811-1896)

Saturday, May 19, 2007

Strength.....

Strength…My strength is in believing in and of myself. If I have the conviction to wake up every morning and say to myself, “Today is a new beginning, make out of it what you will and take it in your stride”, that is my strength. And every new day is just that. Not only do I believe in myself but all those who are around me, Jan, my family, my friends.
To hear the sounds of life and to know that I am but one small person living with a disability. To accept and acknowledge this is a major step in my battle, this fight that I must go through to get to the other end of the day and say, “Well, I have won that one”. It is really a great feeling to be able to say this and to know that what happens tomorrow can not take away what happened today.
My walking is another challenge.. it is almost like taking one step forward and two back but as long as the determination is there I will keep going ‘upright’ as long as possible. But I have found that to try and carry something in my right hand and use my stick with the other and to get BOTH legs moving,, WOW.
Eating is also starting to be interesting in that I seem not to be able to chew and digest ‘beef’. Doesn’t matter how soft or how well cooked it is. Even when it has been put through a blender, the texture of the meat, the fibres just build up and roll around in my mouth. Other meats we are experimenting with . Interesting hey…
Soup on the other hand is great. Bread and soft rolls also no problem. Drinking, a lot of coffee and the odd fizzy drink. First drink of the day though is a cup of tea. Must have my tea….
And getting out in my power chair and going down to the local pub for a drink, I enjoy that. Just one mind you..hate to be had up for ‘drunk in charge of a mobility device’. ( An elderly man was killed last year driving his mobility scooter by a woman in her car who had had one too many drinks ) . Another day had at the ‘Day Care’ today. It is great to have all these volunteers who make our three hours there so enjoyable. We had a guy came in today to play the Organ that they have and one of the women volunteers there joined in when I said, “Lets have a dance to this piece of music”. So with me hanging on to a chair with one hand and standing upright we ‘Danced” on the spot. Great fun and that is what it is all about. Try and forget my problems and enjoy the day in whatever comes my way….

Saturday, May 05, 2007

Memories...

The time is midnight and it is time for two tired bodies to hunker down and go to sleep. Moonlight is showing through the drapes and outside I can hear the soft breeze blowing in the trees. There is the promise of a nice day when we get up. Jess, one of our cats is sleeping on top of the Duvet between us and I can hear her purring .
Jan falls quickly into a heavy sleep and I pull the bed sheet up around my shoulders. It has been a long day and I should be tired but sleep eludes me. Lying there in the dark with the warmth of the bed surrounding me and listening to the wind outside my mind starts to wander. It is like I have stepped into a whirlpool of sights and sounds, all intermingling with each other.. Jan stirs briefly and then slips back to sleep.. My mind is dredging up memories of people and places and events of long ago.
My years as a young boy growing up in a loving family of five brothers and a sister uppermost in my mind at the moment. Faces of people that maybe I should know but who have grown dim. One after the other they flash pass my eyes and I lie there, in the dark, wondering , wondering…..There is my mother, waiting for me to come outside to help her in the garden. It is summer and a time that I in particular enjoyed as we get down on our knees very early on a Saturday morning with the sun shining down and get our hands into the soil to weed the garden. Out of six boys I was the only one interested in the garden. The rest of the family still in bed. More memories flood in…I turn over on my side being careful not to disturb Jan…Family outings were enjoyed by all and a picnic lunch at a local beach always went down well. Birthdays were always remembered and in the early years of ‘Black-outs’ and food shortages because of ‘World War Two’ presents were sometimes in short demand. Clothes especially as Mum was short of money and it wasn’t unusual for us to be given ‘New’ pants made out of sacking, Even shirts were made out of what ever was on hand.
I turn my head to look at the time, 1.30am …Listening to Jan I almost feel envious … Places that I have been to are crowding into my mind. Holidays overseas doing the sightseeing bit but also happy thoughts of staying in the cottage that my father lived in as a boy in the ‘Shetland Islands’, seven wonderful weeks. More memories as a young man working in various trades. The whirlpool in my head bringing up pictures of the family covered in ‘blackberry’ juice walking from an afternoon picking berries. What a sight.. hot, dirty and with scratches from head to foot. And thousands of berries.
Oh, those were the days… I make the mistake of stretching my legs which cramp up on me…The long evening walks with Mum were also a time to look at what was going on around us. Strangely, I don’t seem to have many memories of my Father in those early years of my life. But he was one of the worlds gentlemen and I loved him dearly. If only we could film our memories. What a legacy to be able to pass onto my family.
..Jess, the cat, gets up and changes position …the time is 2.45am and my mind is still struggling, still trying to put things into perspective…Time is catching up with me and I have the memories of the three people I loved most in the world, my parents and my sister… There is the feeling of moisture in the corners of my eyes, my cheeks are wet and I realize that I have been crying. ..Jan still deep in sleep, the other love in my life…Memories of meeting my future wife, our marriage, the honeymoon and the children we had. My thoughts now turn to the present and in particular to the date of 15th December 2005. It is if I am there again in the Doctors rooms, Jan sitting there watching and wondering what he was going to say… I knew what he was going to say, I just didn’t expect to be given a time frame…You have Motor Neurone Disease and two and a half years to live. Leaving the Doctors rooms we make our way to the main door. I stagger slightly trying to hold my emotions in. Jan holding on to me. A day in my memories that I would much rather forget.
…3.15am and I feel the whirlpool in my head slowing down as sleep tries to take over…Fleeting glimpses of faces again, family and friends. We have raised a family and I can see both sons getting married. Events still rolling past my eyes. I turn over slowly, realize that my right hand has cramped up and straighten the fingers out on my chest. The wind outside has lessened and in the distance I can hear a siren. ..Time is just coming up to 4am. Dawn is a matter of hours away. Jan is stirring…I start to slip into sleep, my eyes closing with reluctance. Jan sits up and I ask if she is OK. Knowing that I am awake she says…"Would you like a cup of tea"…I never refuse a cup and ten minutes later I am sitting up in bed having a hot cup of tea. Why not, I wasn’t doing anything else…5am and we both snuggle down again and this time I go straight to sleep…
My memories have been put to one side. They will surface again, many more times. Our memories are the storehouse of our existence, without them we would be lost. If its not to late write down what you remember to make it easier for those you leave behind……

Thursday, May 03, 2007

Hourglass of time....

We are like grains of sand in the hourglass of time. A time that knows no boundaries and has no start and no end. And that is the question I need to ask myself. Where did it start and when will it finish.
As a young man in my early teens I used to get severe cramp in my left leg which seemed to go on for ever. The only relief was in the form of my mother massaging my leg to ease the pain. This cramping lasted only for a few years and over time ceased.
But, it is my left leg that this blessed MND started in and begs the question, WHY. Is it a coincidence. I have been told that it is not. But who knows. I don’t.
As the grains of sand move on down they interact with each other, some falling just that much faster. And so it is with ALS/MND. How much faster will I fall or will the progress down slow and cause the hourglass to tilt. This is what we all hope for but the reality is that we will, with time being the creature she is, put the hourglass back on track and our grains of sand will continue on their ultimate course.
We are a strange people. Our bodies control us in all aspects of our being, in the way we talk and think and how and what we do . And it is the same when we contracted ALS/MND.

WE HAVE NO CONTROL…our body controls us…
The body dictates to us that we will no longer be able to do this or that. Life as you know it ( and as time knows it ) has ceased to exist. So, what do we do. You ( I ) juggle and make the most out of a bad situation. We still require that daily contact with the people who matter the most in our life’s and they with us which means that they too have to adjust.
We still need to eat and drink, brush our teeth, get dressed and do all the 101 things we used to do. But now, with ALS/MND and time standing on the sideline we have been handed a new set of criteria. A new way of living.
The guidelines’ for us and all of those about to be diagnosed have changed dramatically . And to achieve the quality of life that we once knew and to be able to hold on to it for a little longer we have to make aware, to the people of the world, the situation that we are in.
Time will not stand still for us. This we know. It may slow down but that is all. If I could climb or run or even walk to make aware and to raise funds for ALS/MND I would be out there doing just that. But, that is not possible so I will try and do my little bit via the internet to bring more awareness of not only my situation but that of all people suffering this disease.
The sand in MY hourglass continues to fall………..SLOWLY…..