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

Sunday, September 16, 2007

Faith...


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…

Wednesday, September 12, 2007

Update...

UPDATE ON MY CONDITION

Even walking now with the ‘Gutter Frame’ is getting progressively slower. Harder to stand up straight as back muscles getting very tired. Hands are loosing a bit more coordination with the left hand catching up to the right as far as muscle wastage goes. Also finding it more difficult to pull lower garments up when dressing by myself.
Now finding that more foods are not going down the same which is a bummer. Lower legs (both) are looking thinner with my left one being the main culprit. Have noticed (rather felt) that my backbone is becoming more noticeable.
Looking at having a ‘Peg’ fitted into my stomach to enable me to supplement my diet.
To all outward appearances I have gone downhill, but, on the inside, well, I am still the same. I still have all the normal thoughts and feelings that everyone else has and it is that which is helping to hold me together. I am still a husband and father, friend and supporter to other people with ALS/MND. I believe implicitly that life for me goes on despite what I have and that I will continue to enjoy and take part, as much as my body will let me, in events concerning family and society in general.
I will not have to battle with getting in and out of a high bath for very much longer as we have found a house with a ‘disability shower’ and ramps up to the doors which means I will be able to go out in my power chair and enjoy once more having a ‘walk’ into town or getting a breath of fresh air ‘walking’ with Jan.
So, I get on with life and take each new day as a bonus. My body may be breaking down but my spirit and resolve is just as strong now as it was almost two years ago. I will also repeat here that in myself I am not angry or bitter at what has happened to me. I can not change my future and ask for the old body back, that is not to be, but I can, in some small way, by being positive in my attitude and outlook on life help others with ALS/MND…..