Symbiotic

Just what are we…we are a free standing, free thinking class of warm-blooded vertebrae animals. We have the advantage over other classes in that we walk upright and have a highly developed brain. We have the ability to work in many environments and make adjustments to the way that we as a whole live.
In other forms of life on this planet there are, in many instances, what we would call a symbiotic relationship. You have a host and a parasite, both living as one and eventually it is the parasite who comes out on top.
To all of us with ALS/MND we also have a symbiotic relationship. Like all parasites ALS/MND has to feed and it does that slowly and surely by eating away the muscles that holds our bodies together.. Muscles and tendons are part of the framework making up the human body. You remove or damage them and we are in trouble.
We can not back out of this relationship, from this disease that lives within us but we can learn to live with it and adapt to the conditions that are imposed on us until such time that our bodies can no longer tolerate the restrictions, the boundaries and the far reaching consequences of a condition that we still know nothing about.
ALS/MND has many tentacles spread over most of the world and once it makes contact with an individual will not let go.
But unlike other forms of life we hope to find ways of beating the odds and through many agencies and medical institutions world wide we are looking at finding a cure or at best a way to improve the quality of live that we have in the meantime. It may yet take many years but if we can rid ourselves of this complex and difficult condition mankind will be better off.
I remain positive and try to be a support (via my blog) to others with this disease.

Thank you

You can not imagine what it is like not to be able to have a bath with the fear of falling or hurting ones self because of your bodies condition until you have someone to help you…to know that there is now no cause for alarm or worry in getting in and out of the bath is really great.
Even having help with dressing.. you try to put on a shirt or a pair of pants or socks and shoes and those wonderful objects called hands have a mind of their own. It can be very frustrating and time consuming. So to be bathed and dressed with no exertion or stress makes for an easier time all-round.
And that is what it is all about. To have life made easier for us would be our biggest challenge. To contemplate being in a situation where you have to use vast amounts of energy just to do the basics, like pulling up a pair of pants can be frustrating not only to yourself but to those around you.
With me it is also the fact that the lower back muscles seem to be weakling and that makes just standing up straight hard work. Such an everyday task but to many people with ALS/MND it is the simple act of doing what you have done all your life taken away from you that really hurts.
And it is this hurting that makes some of us determined to get on with it and go through the process of enjoying what we have with family and friends. Sure, there are moments when even I sit back and have a weep but strange as it may seem I am not weeping for myself but for all those whom I love, my wonderful wife, my sons and their families, friends that I have made via the internet and to all those who have been helping me.
I lie back on my lazy-boy and quite often now start day-dreaming on what has been, what is and what could have been. Our futures may look dark and foreboding but there will be many moments when your day is brightened by a smile from someone you love or family members drop by to spend time with you. To see the sun shining and hear birds singing. To look up and see a beautiful rainbow. Looking at family photos and remembering all those precious times.
All of this helps to bring back to you the fact that you are a part of something special, that you are here for a purpose, to pull together not only your family but in reality all off those suffering from this disease word-wide.
We all need that ‘loyalty’ of commitment from the word-wide community to try and erase the hurt, pain and in many cases the torment of not being able to cope. Speaking for myself it is that ‘loyalty’, the feeling of devotion that says to me that there are people who care, be they family or care-givers. To be able to ease my day and take away the daily stress and fatigue and to give those moments back to me that mean so much. To shed a tear or two for those who may not have the support and love of family and friends and to be able to thank everyone in my life.

Our race

We are all children at heart, wanting the best things out of life. And some of us are lucky and get just that, health, wealth and happiness. But there comes a time when a few of us have to sit back and have a look at what is happening around us.
I am one of those elite few. To look back on my life and remember all the years when I was considered normal. Well, as normal as one can be in this day and age. To be able to go into town, spend hours walking around the shops and generally have a good time.
To travel by car, plane, boat or any other means of transport was no problem. To those of us who were sports minded the world was our oyster and our bodies were the foundation that supported all our hopes, our inspirations and the glory of our race.
We trained in all fields of society becoming leaders and learned much of what makes up this race we call man. But… like every well oiled machine or organisation there comes a time when we have to stop what we are doing, to stand back and reconsider what our role in life is.
Our role is very simple…to stay alive as long as possible. To that end we accept whatever help is offered and prolong the invertible finish to an existence that has affected many people worldwide.
Even as adults we would like the best that the world has to offer but in our case that is not to be. It affects everybody in one way or another and no matter your position or occupation in life, no matter what gender or age, whether you are single or have a family or where you live, ALS/MND will change forever the way that you/I live in this world.
We, as a race of people, have adapted to the many conditions that life in general imposes on us. In many cases we think we are superior but nature has a way of changing that way of thinking and we must concede to her whims. In that we have no choice .
But, we are also a race who will if in necessity, fight back. And we do that with the help of many people. There are so many ways now of making our daily living requirements so much easier for us. Eating, walking, bathing, sleeping and all the other necessities that we as humans need have all been adapted to fit our individual needs.
I may have a terminal illness but I am not going to stick my head in the sand and pretend that normality is still the norm for me. I am who I am and if I have had to fit in to a new way of living then so be it.
There are people out there in many countries who take it upon themselves to help those of us affected with this disease and this also includes the many official support groups worldwide. I would like to mention that the woman who runs the ‘Ohio’ support group in America ( Phyllis Van Horn ) has at long last been recognized for all the work that she has done in the past four years. I would also like to publicly thank another woman, Margaret ( Maggie ) Baldwin of Toowoomba, Australia for all the work she does for the ‘Queensland’ MND Association, in front of and behind the scenes . Having lost family members herself to ALS/MND she knows what we are all going through and has put heart, body and soul into doing her bit. THANK YOU MAGGIE….
So, I go on to the next stage of this play on life and wait to see what is in store for me…

UPDATE ON MY CONDITION…
Now totally dependent on a walking frame inside the house. Need assistance now with bathing. Speech pattern is starting to become noticeable with slurring of words . Food is becoming an everyday experiment, mainly with meats. Also seem to have extra saliva some days. Loosing more control of hands when using both of them to do something, IE, tying up shoelaces. Looking at getting help with using the computer mouse as I now have to position right hand on mouse before using.
Apart from the above life is a box of roses, if only. I accept the challenge that has befallen me and take each new day as it comes. I remain still very positive in my outlook….

Quote….Do not follow where the path may lead. Go, instead, where there is no path and leave a trail.
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