trtt

hi there. I'm really not sure if this is how you even post a comment. This is for "trtt". My mom was also diagnosed with this monster on Dec 22/09. She is only 66 yrs old. We are devasted & still in the "shock" mode. I still cannot get my head around this dreadful disease. To me, there is NOTHING anyone can even cling to as a glimmer of hope. We all know how things are going to play out!!! This hs been almost 2 months & I still cry daily.....God doesn't give you anything you can't handle????????? ya right!!! He's playing quite the trick on us all!!!

Hi trtt,

I am sorry to hear of your mother's dx. I have not noticed any overt side effects with using Rilutek other than mildly > liver enzyme readings. I don't believe Rilutek does much, if anything, to slow disease progression. I thinks the best potential treatments are a high fat/high protein diet, supplements, marijuana, and possibly, ursodiol. Exercise must be kept to a minimum--stretching and range of motion exercises are helpful.

Please let me know if you have any other questions.

Hi, I am sorry about your mom. I know what a blow it is to get the diagnosis and am glad that she is doing well. You are right about the progression, no one knows how it will go for anyone. Some say that limb onset is slower than bulbar (me) but from what I have seen on the forum there is no way to generalize. I started slurring words in July 2007, dx in Jan 08, and can now not speak in a language that anyone can understand and almost all my food and drink goes by my peg tube. But I can still use my hands, legs and feet so I am doing ok.
Say hi to your mom for me
Barry

Hi to all, I think this forum is great. I'm looking for a lot of members to become friends with. My Mom was just diagnosis with ALS on Dec 22, 2009. My family was devistated. My Mom has been a very healthy person for all of her live, except for a few items that ended up being minor. She just turned a very young 69. I'm not ready for her to leave me yet, I will do everything in my power to help her fight this and possibly have a number of years left to share. I need help from all of you. I've been researching endlessly for many days and nights.

Here are a few questions for you who can give us some info from your experience.

A. Does detoxing work and do you continue it?
B. Did you change your diet completely and what do you eat?
C. What level and types of exercising helps?
D. What supplements have worked for you?

Thanks in advance for your input and experience.
trtt