My name is Donna and I am a caregiver of an encephalitis survivor of some 27yrs now.
I am in search of others out there who may be in the same situation as myself.
My husband was diagnosed back in 1984 and it has been a long and lonley road since then!
We had virtually no help from the medical professionals. No physical or occupational therapy at all! My husband is legally disabled.
Because he is highly functional and intellegent this disease/diability is almost unseen or silent! Which works against us at times.
I feel very alone as a wife and caregiver. No one really understands or "gets" whats Encephalitis is when I try to explain our situation. As a result I don't bother anymore. We have learned to "hide" our rare situation ~ it's just easier. So we don't get close to anyone. Friendships are rare.
We have learned many ways to deal with this situation and use various "tools" to help function as normal as possible.
Just looking for some feed back and a friend! Donna