A response to a new ALS patient...

A lady on our ALS forum who feels she is progressing quickly and also has two children ages 17 and 12... There are so many questions from people who are newly diagnosed with ALS. I try my best to help newly diagnosed patients. Unfortunately, I know what it's like to be there...

Hi ?????,
I never did take the Rilutek and never thought it would have much impact on progression speed. At best many patients say that it only helps in the last stages of ALS. (I.e. last two months) my progression is abnormally slow and I thank God for that fact every day. It has been for the half years and my hands, arms and shoulders have atrophied significantly. Although I can still use them to do daily tasks, is not without fatigue and difficulty. My wife cuts my food and we also purchased a special toilet seat boduet. My legs are still working well and we even went skiing a few weeks ago with my arms dangling and no polls.
When I was diagnosed, my kids were age 8 and four. After, we kept it to ourselves but felt strongly about beginning to give our eight-year-old a little bit more information. Eventually, through our outreach and involvement with fundraisers, they both began to understand the entirety of the situation. Now, at age 13 and nine, they both understand what ALS is and what will most likely be their father's final outcome. We have looked into counseling for our 13-year-old and he is, in fact, involved with seven other kids in a special discussion group both for moral support as well as school improvement ideas. Going through puberty isn't helping either. We don't notice any changes with our nine-year-old behavior except that he is very willing to help me around the house. He does act much more concerned about his father Dan many of the other kids on the block. This will be a great benefit to him later in life-the compassion and patience. Our older one doesn't seem to be affected by our situation, but my wife and I know better than that. We know that at his age there must be many thoughts and fears because of future changes and the unknown. It's hard to find a counselor that you feel comfortable with and that you can feel is actually making a difference. We find that just talking to them in a very open way while in the midst of playing games or some other activity, is the best way to find out how they are feeling and what they are thinking.