I need to find resources for Lewy Body dementia. Any information at all is needed urgently. My husband has a new diagnosis. After eight years they have decided that he does not have Alzheimer's dementia, but Lewy Body. Could you help me find resources and books on Lewy Body? It is a totally different animal than Alzheimer's as I understand it. Instead of going steadily down hill, it is more of a straight line roller coaster ride. I am definitely on it and need information.
We had a mini miracle about six weeks ago. I went to help him up from the chair and he was paralyzed from the waist down. They thought that he had had a stroke from the waist down. All kinds of testing showed that nothing had happened. Finally, they decided to do a lumbar puncture and drain fluid from the spine. They thought it could have flowed down from the brain. They had told me that he would have a fifteen minute window to have a physical therapist see if it had been effective, then the fluid would fill back up. Well, in that fifteen minute window he was able to get up and with help walk down the hall taller and stronger than he had been able to in months. Now he can also talk in sentences and full paragraphs and he can tell me what he is experiencing. The window has not closed and noboby knows why. The amount of fluid they found was minimal and should not be having this result. He can also read words again. Sometimes he is so lucid. At other times he can't remember that what we just did or where we went, which makes him know he is losing his mind and he says, "If I just did that then I must be losing my mind!" It hurts both of us both so much.
From what I have been able to find, this is the pattern of Lewy Body. Because of this roller coaster ride I had to move him into a memory support unit here on the property of Splendido. But because at times he is so lucid he does not understand why he has to be there. It is very draining on me. Any information you can find for us would be so helpful. Joy
more
