Old 11-29-2003, 11:01 AM #1 (permalink)
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Hi and welcome to our Canadian site, ALS has no borders or boundaries this disease seems to be non judgemental in how it attacks the victims and their families. The pain of seeing your loved one disolve from a once healthy vibrant human to a shell of their former self robbing them of their life's passions. Your grandmothers voice, my brothers hands and voice he was a guitar and singer in his own band. It is a cruel unrelenting pain we feel and being helpless to protect them from the horrible fate of what is to come can leave us with such anger hurt and questioning the power of what this universe deals us.

That being said I believe that once the dust finally settles and we no longer are in the crazy burnt out place of caregivers. We have some very powerful tools to help fight this disease that continues to rob some our loved ones of their right to life. When we take for granted the very simple things such as reaching out to scratch or lifting a glass to take a sip of water or crunching an apple then we can realize just how precious each and every moment of this life is. Once you have been priviledged to care for a person with ALS these little things become gifts and the little things become precious. If this is all that I get from what I and my family went through caring for Craig my brother who passed away in June 2003, at 39 years of age then I praise the universe for allowing me to see just what is important here on earth.

Take each moment as the precious gift it is think before the words come flying out of your mouth, hug before the moment passes, kiss without thinking, praise each accomplishment no matter how small, smile while the muscles in your face allow you to. Reach out and connect with everyone around you and treat all with respect because the gift of walking talking touching and being are still ours and have not been taken away these gifts are the bank roll we can take with us when we leave knowing that we used them to our best abilities and they have not been taken for granted.

I have been taught the ultimate gift the respect for life and the vehicle that has been given us could be used in such awesome ways. There are no guarantees and I sometimes wish that some people could experience the feelings we as caregivers have been able to see so that they to could gain a new respect for the gift of life. I am not saying I would wish the fate of ALS on anyone but a renewed respect for life could be life lesson 101.

I agree to take the time to love each other and respect each other while we have the chance. Joy
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