Prisoners are told to be in class, they always sit in the back, disinterested and not at all engaged in the course. Vacationers were also told to attend, but since someone else is paying for their time, being in class beats being at work, so why not. They usually sit in the middle rows. The Volunteers are fully engaged and sit in the front.
Even with ALS I am not a prisoner. Nope. I was, but not any longer. I have ALS and I am a quadriplegic and I have the difficulties associated with the disease, but I am not a prisoner to it. How can this be? I choose to refuse. Do I feel confined? Absolutely. But I also enjoy extreme freedom through my technology. Although I have lost the function of my arms and legs, through the modern miracle of Eye Gaze Technology, I am able to use the full function of my computer. I am typing this with my eyes! With my computer I can go anywhere I want to go. I can communicate with anyone that will listen. I am speaking to you right now.
I am also not a vacationer, I know, I know. How is it that someone that has practically everything done for him each and every day, say they are not on some grand vacation. I get moved around, I don't lift a finger. My wife gets my clothes ready and dresses me each morning. I don't even have to worry about walking, I am lifted and carried to my wheel chair. If I am rolling, I am pushed and rolling fat in my custom built metal flake blue beauty, and it doesn't even make my butt look big. I get massaged and exercised several times a day, when I start to smell offensive I am bathed. I am fed my meals 5 to 6 times a day and I don't even have to chew, that is taken care of for me too. Oh yeah and I can keep doing whatever it is that I might be doing while I enjoy my meal. It all goes through a tube sticking out of my skin near my belly button. I don't even have to wipe my own ass anymore, nope my wife takes care of that too. Sounds like the ultimate vacation you say? Well thats not all there is too it. Oh no, not even close. Get this......I don't even have to breath for myself! No shit, really! I have a magic box that has a hose that brings air to my lungs through a hole in my neck. There's still more but we will talk about that later.
Enough about what I am not. Let's talk about what i am. I am a volunteer. And, that is why I am here. That is the purpose of this web site. We hope to educate and stimulate others regarding ALS. It is NOT a death sentence. You have a choice. Our promise to you is that we will be upfront and engaged. We will always be keepingitreALS!