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

Saturday, January 26, 2008

Give and take

What am I…I am a person approaching the golden age of my life where I can sit back and watch the world flow past. A world full of marvels, new and old. A world where nothing seems impossible and every day gives us something else to speculate on.
It won’t be long before mankind heads out to the far reaches of outer space or have cities on the ocean bottom. We will have learnt to co-exist with other life forms and benefit from their knowledge with regard to our many medical problems.
Science fiction, well, maybe. But we can dream and dreaming is I think a prerequisite of anyone reaching that milestone in their golden years. Many years have gone past and I don’t regret any of them.
I can watch with interest the grandchildren growing up in a world that is changing every day and maybe not for the better. We still have our wars, religious persecution, hate, starvation and the general hardship that so many
People have had to bear. But out of this in little pockets around the world you will find wonder, love, and the will to live as normal a life as possible .
We give with one hand and take with the other.. that is our nature. And so it is with me. I have given of myself to workmates, friends and family all my life and now is the time to take.
We watch as life strides past us heading off along the road that we, because of our condition, must follow. To anyone with ALS/MND there comes a time when the very nature of what we have dictates how we are to spend the remaining months or years. But if you are a fighter you may be able to change if ever so slightly the conditions imposed on you.
If you are a young mother with small children then life must of necessity be hard to bear but that is where family come in. And to have the support of a spouse or partner makes your journey through the time remaining so important .
Everyone deserves to reach that golden age including us so as I reach forward and gather about me all the things that mean so much my thoughts go out to those of you heading along the same path as myself.
Don’t look down but keep your gaze focused ahead of you and take what ever is put in your way as just one more gate to open on this, your road to life….

Saturday, January 12, 2008

Well balanced

We are a complex , multifunctional creature. We are a race of people, known to be resourceful in certain fields such as medicine but it is in that very same department where we come unstuck.
I like to think that the human body is the epitome of what mother nature can do. It is a pity also that in this perfect example of a well balanced machine of blood and bone, muscle and tendons that an imperfection can occur and it is starting to do so with alarming speed around the world.
I am talking about ALS/MND and the fact that to date there is no known cure for people with this condition. It is also a fact of life that those of us with it ( well, most of us ) get on with living as best we can .
Life is hard enough as it is without any of us having to fight for it but that is what you and I are doing, day by day, hour by hour in some cases. Every day I open my eyes is a reason for me to say ‘thank you’, get up and enjoy whatever comes my way.
Getting out in my power wheelchair is a real buzz and meeting up with friends or going to visit some ones place can be very rewarding. You learn to regulate how much you can do while out so as not to be too tired by the time you get home again.

Showing people that we can take part in every day affairs, that we can and do go into restaurants /movie theatres and use public transport in our chairs and also go shopping. That just because we are in a wheelchair does not mean that we can not talk or think for ourselves

I also find that help is never far away and if you are a person who is not afraid to accept help then do so, it makes life so much easier.
Another great thing is that sometimes out of the blue your day is made better by a surprise in the mail. This happened to me today when I received a small parcel. On opening it we found that there was a musical CD from Jim Mora, a well known presenter on Radio New Zealand. Jim is a talk back host and is also involved in a TV program called ‘Mucking in’.
It is the little things like this that mean so much. A smile, a laugh, its not much to ask for and if you can reciprocate then the effect is two fold.

Friday, January 04, 2008

Looking forward....

2008 and beyond….

Christmas has been and gone and now we look forward to the forthcoming New Year… What will it bring. We look back at last year and try to think of all the positive things that took place around us.
The world itself has not changed in any way with bombings, murder and general mayhem but we, as a race can look at ourselves and know that out of this madness there is compassion, goodness and the willingness for people to help each other in time of need.
With ALS/MND on the increase we have to be seen to be heard but it is the making ourselves visible which is the hard part. The other aspect of this is funding for research, equipment and all that goes into finding a cure for this terrible condition that you and I share.
The year ahead for me will bring many challenges. Food in general is going to be very interesting as I am finding out already. I am so pleased that I went ahead and had the peg inserted. Walking with the frame is getting harder by the week and I now have an electric ‘lazy-boy’ as I was finding it hard to get out of the manual one.
Sleeping is also becoming something to look at as one night I have frozen feet and the next that hot I don’t know what to do with them. So many little things happening with my body that separately they are not noticed but lump them all together and I can feel the difference.
But my attitude, my feeling of ‘wellness’ within myself, is still the same now as it was before. I am still me and will continue to be positive, not only for myself but for those around me and for all of you around the world who share this condition with me.
I may be down but most certainly not out, not by a long shot.