Totally Locked in State (see Locked-in syndrome) (AdhocBlog sorry only Japanese)
Until recently, I had never heard of this term...
But now it is weighing very heavily on my heart.
Hajime is losing strength in his eyelid muscles day by day.
Right now he is losing muscle strength to close his eyes, so what do we do when he loses muscle strength to open his eyes?...I am filled with such fears.
TLS is a condition in which the patient can no longer express himself in any way. I understand that there are a few TLS patients in the world. We as parents and Hajime must talk about this. It is a very sad situation and something that I don't even want to imagine, but we have to discuss it.
In order to do that, we need to learn much more about it. But the more I look at those sites, the more I feel like my fears are closing in on me.
(translated by MS)