Old 07-31-2009, 12:30 AM #1 (permalink)
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hi all,
my name is ruthie , i have a son 37 yrs and its offical he has als been a long week that did come to what we feared , as all of you probley did searching for a different reason for this als to be something else but i am now heartbroken with the question how can i sit and watch my son go thru this he was always the clown of the family happy go lucky and strong child of mine
i really dont even know what i want from all of you as we all have no answer for this diease but, i feel i need to reach for something a hope maybe something that can fix this i really dont think i can handle this it is the biggest burden i ever had to carry i want no one to have this ,. under neith i hope i die before him and yet thats not fair to my other kids hope they discover something real soon for all of you and my son
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Old 07-31-2009, 04:56 AM #2 (permalink)
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SO sorry to hear the news, Ruthie, but try to get hold of yourself and know that he will still be the same person he always was. He can still be happy and fun-loving. You need time to take this all in and then just go on one day at a time. You have to live the same but with just a few adjustments.... try not to react to gloom and doom.

He may have very slow progression or level off for a very long time. Your journey with him may be very gradual and you want his quality of life to be wonderful. Get the helps and supports that you need, learn about the disease, and make this time very special with love and good times. Plan to make the most of every day of your lives together. There should be no regrets and no devastation.

This is it..... so make of it the very best of everything in spite of the diagnosis.......
I know you'd likely like to give me a good punch... so go punch your pillow and have a good cry. It'll help you get started. We are all here for you and will help and encourage you however we can.
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Old 07-31-2009, 11:46 AM #3 (permalink)
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I'd like to echo Marjorie's sentiments and thoughts as they were so well said. I cannot improve on them.

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Old 07-31-2009, 12:38 PM #4 (permalink)
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Hi Ruthie,

Marjorie pretty much said it all, I was in the same spot as you a few months ago. My mom was diagnosed in March, we went for a 2nd opinion and the diagnosis was confirmed. The biggest thing I learned here is that no question is too stupid to ask and that you will find support and comfort here. Anytime you need to vent feel free, we will be here to listen and to help if we can.

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Old 07-31-2009, 01:33 PM #5 (permalink)
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Hi Ruthie,
Welcome to the forum. I am so sorry for the reason you have to be here. I read your pain and heartbreak in your post. The diagnosis is so new and I am sure your feelings are raw and immense. Feel free to share and ask questions. The members here have been in your shoes and have managed as best we could, you will too.
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Old 07-31-2009, 06:48 PM #6 (permalink)
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thank you all so much, i am now reaching for a produck called opc 3, hyperbaric chamber and human growth threament thier has to be something somewhere but my daughter says it not the musle it is the nurons but i will see what i can find
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Old 07-31-2009, 07:08 PM #7 (permalink)
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tdamess, My heart goes out to you and many prays. We will get through this I know. My husband was diagnosed a year ago June 08. I cry most every day. Then I get back to work, what else can we do.
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Old 07-31-2009, 08:30 PM #8 (permalink)
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and marjorie wilcox i would not to punch you right now lol .
i know what you are saying is true ty
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Old 07-31-2009, 08:32 PM #9 (permalink)
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ty also rhonda kim i do know how you feel
i also noticed i have to keep my mind busy sitting at a waiting room with no book to read the tears came no matter how hard i tried to keep them back
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