Real questions from Young Children.
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Why do you have ALS disease?
The truth is I don’t know. We do know that there are a lot of doctors around the world who are trying very hard to figure out what causes ALS. I am learning how to do what I used to do, just differently.
Why are your hands so weak?
You know how when you plug something into the wall to connect to the electricity goes, so that it can turn on? Well, think about my hands being plugged in but the electricity just does not reach them. The muscles that make my hands work, can’t work as good, because the wiring is off.
Does ALS hurt?
Sometimes my body hurts because I can’t move very well, anymore. That is why it is so nice when someone helps me move my arms and legs to keep them going.
Can you recover again?
Right now, no I can’t. Today, what I can do is find new ways to do things and hope that one day the doctors will make sure people like me can recover.
Why can't you walk?
The muscles in my legs are not getting the right signals from the brain to tell me to walk. It is like the lamp plugged in to the wall, the electricity has to travel to the lamp to turn on the lightbulb. But in people with ALS, the electricity, or the signal does not get to the muscles, and because of that misfire, it doesn’t allow me to move.
How does it feel to have ALS?
Because my muscles get weaker, things feel like heavier. Somethings that I could lift easily before, have become impossible to lift now. Not being able to do things myself also makes me feel frustrated and sad sometimes. I really appreciate my friends that help me move things.
What happens exactly when you have ALS?
The nerves (or wires) in my body, can’t talk to the muscles like they used to. When the muscles don’t get the signal from the nerves, my body isn’t able to move. That is why I and other people with ALS, have special machines to help them breathe and chairs to get around.
If the wires are broken, why can't you fix them?
That is a good question and lots of doctors are trying to figure that out. The main issue is, when the wires go out, it is very hard to get them going again. We wish they could just be replaced, but there are so many things are attached to them and to other places in the body, that it just can’t be done yet.