ALS is a disease which I would call: the silent killer.
From that aspect she is like cancer. Moves silently, biting secretly every healthy area. Don't feel a thing! No pain, no burning, no nothing! She progress through the nerves system, affects the muscles. Not on all, but for instance, the intestine muscles won't operate without the swallowing muscles that don't work. They will atrophy not because of the disease but from boredom.
Not that I don't feel pain at all. The muscles are getting shorter and cause enormous pains (massages help for a short time). They are getting shorten regardless to the body's esthetics, and creates odd shapes. On my right foot for example I have a permanent point, and it makes me feel like a ballet dancer. My right foot fingers ordered them selves like the rockers' symbol (Hadas found it out), my left foot got a twist inside and my right hand insist on flipping on her back, in a position of beggar.
Silently, each day a little more, my body is going to it's unknown way, which the end un known.
Translated by Elinor
Published in Hebrew at 29 June 2008