It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Amyotrophic Lateral Sclerosis (ALS) Message Board

Amyotrophic Lateral Sclerosis (ALS) Board Index

My husband was 40 when he was dx., he lived 5 years with the disease. He too refused to be seen by more docs, prodded poked and told he was going to die. One needs hope to live and the cruelty of the disease and sometimes lack of compassion on the part of the neurologist makes it hard to go back for more of the same. We lived in Maine and he also did have lyme disease.. so we hung our hats on lyme and held onto hope. My husband shielded himself from those that pitied him or acted like he was going to die.. we treated him as normal as possible. I am sorry that it is hard for your brother, but my husband played the denial game and we went right along with him... I am not sure if it was the right thing to do.. but it is what he seemed to want and it gave us fairly good quality of life until the very end. I don't think hope is ever bad...and as we were told by one Boston Harvard grad neurologist.. there are a very few .. like single digits that have been documented to have it and then it reverses for some reason. THe body heals itself.. turns on or off something.. who knows. but if a few have had it happen... then there is always hope. After all.. at this point what does anyone have to loose? I remember at the time there was a country song.. "live like you are dying.." and before that was Creeds.. "hold me now I am six feet from the edge and I am thinking maybe 6 feet ain't so far down." I could not stand listening to them... although it may be true.. when you are the one staring into the abyss you need all the love and support and prayers and positive energy you can get. The fight to stay alive.. the adjustments that it takes.. the utter unfairness of all of it.. it is his right to be angry. It is his right to be the end.. no matter what happens love does carry through. Sometimes it takes an inordinate amount of patience. ... even will.. but you have to remember this is his experience.. he feels trapped.. he is panicking. No matter how much we love those who are suffering.. we cannot truly understand their inner thoughts or where they are drawing their fears.. or their courage from. I wish you all the best.. I watched it tear my children apart.. I watched them fight with each other and me and blame God. At a time when a family needs to be united.. needs love.. they are really put through the wringer. Try to recognize it.. try to control and try to "will" peace... at least within yourself. You can never go wrong with gentleness and love. Realize that all the hurt and anger and pain is not from a good source.. don't give it more power than it already has. I will keep you in my prayers.. and your brother, mother and family. My sincere best to you.. you are being a good sister.

All times are GMT -7. The time now is 01:47 AM.

© 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!