Jeanie:

I am so sorry to hear about your loss. I hope that you are taking care of yourself. Thanks for sharing that information. The insights I am getting from all of the wonderful people on this list has been priceless. My sister and I are learning as we go - thanks again for sharing and I am so very sorry to hear about your loss.

Liz

a lot of the literature says 2-3 years, 5-8 years, less than 10 years, etc. But our neurologist said that there is a lot of new information coming in recently. For one thing, LBD is commonly misunderstood and misdiagnosed for a long time, so by the time it truly declares itself, it is late in the disease, so it has APPEARED to be a shorter survival time, while the individual actually showed early signs (REM disorders, hallucinations) ten or 20 years earlier but either withheld it, did not realize it, or attributed it to something else.
Also, he says they are seeing that there are more than one type of LBD-as has been mentioned, there is Parkinsons with Lewy Body and there is LBD, but apparently there is a third type they are looking at which is more insidious, where the course is much longer. In this one, parkinsonian symptoms occur late in the disease, long after symptoms such as anxiety, sleep disorders, and hallucinations first begin to appear.
He also said the course of the disease is highly variable within individuals, with declines and plateaus which are impossible to predict. Generally he has told us to expect two things: that she could go on a long time with this pattern, with the declines coming closer and closer together and being more severe, and that at any time she could deteriorate very suddenly or die from aspiration pneumonia, choking, a fall, or a cardiovascular accident due to autonomic nervous system problems. Also, that anesthesia would cause severe sometimes non recoverable deterioration, and that as the disease progresses, they often become more sensitive to medications and can have severe reactions to them.

Im sure the nursing staff person meant to comfort your mom by telling her she did not have LBD, but it was completely inappropriate. This disease is hard enough to deal with and to accept, without well meaning but cruel false hopes or disbelief.

I would certainly involve the director in this.

Thank you SWood for the post. It was very informative. Luckily for us, the head nurse was fired and replaced with someone a whole lot more professional. My mother has had a lot of problems with various staff at ALF facilities. In part because my mother has some borderline personality disorder / bi-polar disorder issues and isn't always very nice. She also has highly fluctuating symptoms and this has led to some people simply believing that she is making things up. I have tried to bring literature / cds etc. on the disease for staff to read, but they simply refuse. They think that we are crazy, overprotective children who are inappropriately advocating for our mother. I wish that they were more willing to learn more about this disease. We are on facility number 3 - the first two facilities she was asked to leave because of her behavior problems. I am intrigued by the different types of DLB that you discussed. I am very curious about the nature of my mother's disease. It is so hard to understand sometimes. It seems like days (or even hours of days) and she is on death's bed and having a horrible time - and later, or a different day and she is out shopping and gabbing and talking about all the ways she wants to spend her money. I feel like we are all on a "roller coaster ride" and I have no idea where the track is. Thanks again for the info.

Liz