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

Sunday, September 16, 2007


If I tread on anyone’s toes with this entry then I apologize now..

Where and when does faith come into one’s life as far as a ‘Terminal’ illness is concerned. Faith comes in many shapes and forms, is interpreted in many languages and almost everybody on this planet experiences it in one form or another.
It is like watching the buds on a tree and knowing that come springtime they will burst into bloom. Faith can be knowing that a rainbow will always have the same colours and that the four seasons will follow each other as they have done since time began.
If you can have the belief in and off yourself then you are halfway there in having faith. Believe in your body and its surroundings and know that you follow in the path of many thousands of people worldwide all looking for and finding some form of faith.
Your faith does not have to be religious in nature. It can manifest itself by showing you that people care about you, that the nature of your illness should not be hidden away but bought out into the open for all to see. Faith has, so we are told in times past given back to people, the use and fall function of their bodies.
If only it was so simple. Faith can not restore body tissue that has been destroyed or of muscles eaten away. It can not give back to you, once removed the ability to walk or run, speak or sing or the many body actions that make up the unique form that we know as mankind.
But if you can accept what has happened to you, take it on board in all of its ramifications and know that many before you have had to do the same then faith can be like the light at the end of the tunnel.
Faith is waking up each day and seeing the faces of those who love you. It is the belief that despite your illness you will find the faith to see another day, another week come and go.
I take my faith in both hands and in my heart and know, regardless, that the faith I have will be returned twofold . So, ALS/MND need not, to me, be the end of life as I know it. It is simply another step or two down the path of faith towards another time, another place.
I love life and all it has to offer. I am 65 years old and have had many trips along many different paths and if my belief in myself and in whatever the future has in store for me is to be viable or worth doing then I have to have faith…
So to anybody reading this for the first time and having been diagnosed with ALS/MND and you do not know how to cope.. Take your faith, religious or otherwise, with both hands, look into the hearts and souls of those who love you and know that I at least will be there for you , sharing my faith and the belief that together we can and will find peace and that we will all see the light at the end of the tunnel.
Being diagnosed with ALS/MND is the last thing that anybody wants to hear and it is a cross that many people can and will not accept and so it becomes a situation, depending on what sort of time frame you are given where not only your faith but that of your family and friends is tested to the limit. But with faith comes love and the two combined will in most cases help ease the burden of what you have and make the path easier to follow….
I am into one year and nine months of the two and a half years that I was given and I am still fighting this disease… faith and the belief in myself has certainly helped me come to grips with it…..So, life goes on. I am looking forward to Christmas and my birthday in March…. We move into another house in the next week or two where I will find life a lot easier, for the moment…


  • Robert ~

    You strength is amazing and your outlook is inspiring ... I found your site through Aimee's Story ... My father In Law was diagnosed with Advanced Progression ALS in 1999. He passed away in the summer of 2001. He hated everything that was happening to his body as his mind and sould was forced to slow down with his weakening body. He was a fighter and tried so very hard to show his strength to all of us ... we knew inside how much he was struggling and it was heart breaking for those who knew and loved him. When he passed alls that was left was the shell he walked the earth in ... his soul was happily free again ... he died with a slight smile on his face. Thank you for sharing you story and all that you go through. May God continue to bless you and hold you close. I will pray for you ...

    Rebekah Clark
    Prior Lake, MN

    By Blogger ClarkFamily, At 7:32 AM  

  • G'day Robert, at last I seem to have navigated to the comments place.
    To my surprise I find myself agreeing with much of your discourse on "faith". Most certainly, faith in ones self and in ones most immediate caregivers will make the journey easier to manage. However, I must take issue with your "fighting" attitude. In my experience those who accept, but go with the flow, can extract more enjoyment from living with MND and, possibly, survive longer than do the "battlers".
    Again, it is my opinion, that quality and not quantity of life is that which one should be seeking.
    Admittedly, my 20 years experience of MND has been as a caregiver to two wonderful wives, not at a patient, but I consider that I do have an insight into the progression and emotional effects of MND.
    Good on you Robert, you are doing well.
    Regards Roly.G

    By Anonymous Roly griffiths, At 7:56 PM  

  • Robert, this article is amazing. You are offer strength and support to those to ALS but you also offer such inspiration to those without it.

    Shirley & Sotia Coutts

    By Anonymous Anonymous, At 5:19 PM  

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