Catching up with you all

[Guest guest]

My children have been here this week and I ignored the computer for two days -- and I had 42 messages! You ladies have really been talking.

Just a note to and Polly talking about double vision and the Capgras Syndrome. My husband, Joe, was seeing double in April 1996 after his surgery where he hallucinated and pulled out all the iv's etc. It took a year for it to settle down, but during the double vision time he saw double people at the same time and knew he was seeing double. We adjusted his glasses several times during that year [as we believe now the lewy bodies were attaching to the visual cortex] and settled it down. He does see double occasionally now, but he is totally aware that it is his eyes that are doing that. The only other things associated with this was he saw dark shadow people around the house - not moving just there, and he could walk through them and they dissipated. They never disturbed him.

From 1996 to last fall we treated the Parkinsons symptoms more than anything else, and it has only been since September 2000 that he has started to show the LBD symptoms. His first real symptom was when he did not recognize me in September. His dementia and seeing real people in our home has gone very fast since then. He cannot be put on medication until our clinical trial is over May 1st. I sure hope it helps. He now has two, or even once three, Eves, but he says they all look exactly like me and he somehow knows they are all me. They are never imposters - just me. Two or three times he thought we had two dogs instead of one. He also thought we had two houses exactly alike - next door to each other - but one was slightly smaller because he said he has measured it inside. I have talked him out of that by taking him walking up and down the block to look at all the homes. Since I did that, he no longer talks about the other house. Reading the paper on Capgras Syndrome did not appear to be what he has.

He is usually very clear in the mornings. When he does not recognize me, I ask him to really look at me and see who I am and he always comes up with my name and says I am his wife. When he does not know where he is exactly, I stop him and ask him to look around at the furniture and the room, and he then recenters and knows where he is.

It is so up and down. Some days he can shower, dress himself and shave - and the next day I have to more or less do it all. He remembers his pills - always - three times a day, and can feed himself, shower, and use the bathroom.

As for losing him, I just figure we will last as long as we can - one happy day at a time. I have been so blessed to have a wonderful husband like him for 52 1/2 years......

Sorry to be so long - but time is limited for a while and I just write you after reading all the messages.

Eve