Today, I’ve cried for a long while. I was so sad….
Through the palliative doctor referral, we went to see the neurology doctor, Dr. Chung at the Kaiser Sunset. We were concerning about Hajime’s eyelids strength.
What doctor told us were our worst fears. He told us that ALS do affect to the muscle of eyelids. It does seem that Hajime’s eyelids are already getting weaker now. It shocked me a lot. We never heard anything related about eyelids muscle through ALS. Basically, what doctor told us was except eye movements, all muscle might potentially affect.
Of course, Hajime was in the middle of these conversations so it shocked him too. His eyes were red from crying.
If he can not open his eyes, how he can communicate us, how he can enjoy watching movies..? Is he even cannot use computer anymore? How to maintain his QOL?
So many things are hanging over my head.
(translated by HM)