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Why do you have ALS disease?

It may be hard to hear, but I don’t know. But we do know that lots of doctors around the world are trying very hard to figure that out. But for now, it is something I have so we need to figure out how to do what I used to do, just different.

Why do your hands become so weak?

You know how when you plug something into the wall, the electricity goes and it turns on? Well, think about my hands being plugged in but the electricity just does not go to them. The muscles can’t work 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. But 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. Like the lamp plugged in to the wall, the electricity has to travel to the lamp. But in people with ALS, the electricity, or the signal does not get to the muscles, so we can’t move.

How does it feel to have ALS?

Because my muscles get weaker, things feel like their heavier. And some things I could lift easily before, have become impossible to lift. Not being able to do things myself also makes me feel frustrated and sad sometimes.

What happens exactly when you have ALS?

The nerves or wires can’t talk to the muscles like they used to. And when the muscles don’t get the signal from the nerves, well that can’t move. That is why people with ALS need special machines or chairs to help them breathe and 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. But 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 and they are attached to lots of other things in the body, it just can’t be done yet.

* This fundraiser is facilitated by the Dutch ALS Foundation. If the required amount for the fundraiser is not raised, the foundation is not obliged to supplement this amount and the donations will be at the disposal of the foundation. These will not be refunded.