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

Saturday, August 18, 2007

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.


  • Beautifully written my dear friend. You have brought tears to my eyes.

    Maggie ..Margaret Baldwin

    By Anonymous Anonymous, At 2:36 PM  

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