HELP

[Guest guest]

We have been dealing with the behaviors of lewy since 97, but doctors kept

finding all kinds of reasons [low oxygen, Alzheimer's, too much medication,

etc.] that would eventually be fixed. I kept waiting for my Fred to be OK.

Finally he was diagnosed with lewy bodies about a year ago. Since then he

has had 3 major strokes, has a dead spot in his brain, and has seizures. He

does not have Parkinson's, though has the behaviors sometimes. The docs here

in our small town tell me to go on the computer for info. So I have learned

to do facebook and email, kind of. We finally saw a neurologist 2 weeks ago.

We go again Thurs. I asked for a sleeping pill because right now we are

sleeping 15 min. and then up hallucinating for an hour or two. We are doing

really well if we get 3 hours a night. He prescribed Zyprexa which does

nothing. So many pills make him worse. At least this one did nothing. We are

so much better since the diagnoses and the computer because I quit fighting

with him all the time. I thought he was making stuff up just to annoy me or

get attention. We were hating each other and the doctors were blaming us.

After almost 30 years the lewy bodies had almost done us in. Now I have him

back. I just had to get that he really was no longer the man who could fix

everything, but he's still my Fred. On his good times we still laugh

together. I desperately need advice on behaviors though. Anyone who is

willing to help, please contact me. If anyone just needs an extra place to

vent, I'm thrilled with that, too. I was alone with this horrible thing for

years. We have had every symptom and behavior I have ever heard of with lbd

and no clue anybody else was having them too. Just to know others are there

helps my sanity. Thank you everyone for caring enough to share.