This is an exceptional book, written, with help, by an eminent cardiologist, Thomas Graboys, about his life with LBD. I am reading it to my husband right now, who appreciates a kinship with this man's experiences, although my husband's disease process has advanced somewhat further than has the author's. He shares so many of the symptoms and behaviors, though, it's uncanny. It's the first time we have come across someone else experiencing the phenomenon of hot face, cold hands that my husband gets, for instance. That really made my husband's day.

This book may already have been mentioned on this forum but I thought it might be worth mentioning again.

The cold hands thing is really something, isn't it? My dad's hands are so cold and clammy I wonder if I should put gloves on him even when it's 90 in his room.

Yes, the book has been mentioned several times here. It's a wonderful book.

In this post -- http://community.lbda.org/forum/viewtopic.php?t=771 -- there are lots of links to radio interviews and TV interviews with Dr. Graboys and Vicki Baker Graboys.

One person here (Renata?) had the idea of reading the book aloud to their family member with LBD. Many in the local support group have really liked that suggestion.

Thank you for the link. Robin. From information on his website, it looks as if he's still giving talks.

He spoke to our local support group last year. I invited them back this year but that's TBD. I had heard through the grapevine that wife Vicki has taken over much of the speaking.

Thanks Pat. I'll mention this at our next cg support group in case someone there hasn't heard of it, which is pretty likely! Lynn

After reading this morning's chapter, my husband said he doesn't know if he wants me to continue to read it, after all. He said he doesn't really want to know about the disease. I guess I can understand that--especially if there isn't any good news. I plan to finish it, though, for myself.

Hot face, cold hands? My mother sometimes has one cold and one hot hand.

Garnet

Yes, sometimes only one hand is cold and the other warm.

Pat, my husband said the same...not with the book but I told a symptom or two and what was common with the illness. He finally said "I don't think I want anymore good news" He does still have a dry wit about him which I am thankful!!

Mine, too, is still capable of the bon mot. Getting rarer and rarer, though. He was so very clever before Lewy!

My MIL is in complete denial about having LBD. She blames the way she is on a a mistake a doctor made by giving her the wrong medicine way back (never happened). No way could I read this book to her, but am going to order it for myself. Anything to help better understand this awful disease. Best wishes to all of you out in Lewy-land.

Interesting similarity - for the past 2 years my dad has blamed his poor mobility, and then his total lack of mobility, on his dr. changing his choleseterol meds. 2 1/2 years ago. At first his one of his legs was almost not moving, and he blamed it on the meds. No amount of rational explanation would work - like, if the new med. made ONE leg not work, it would be more likely that BOTH legs didn't work. He wouldn't buy that - this was all before we knew he had dementia and rational thinking was a thing of the past.
I hope you all have a good weekend. Lynn

my husband is not in denial... He doesn't understand it all. He taught AP psych in his "normal years". It's very interesting to watch... He had an episode one day where he became confused, went outside for help (irrational) Hallucinated people who "ignored him". But 15 minutes later...he was sitting in his chair telling me that he knew he had lost his glasses after his shower (and had felt fine before) and then he said it was like a fog came over him...then he said "Hmmm I wonder what's happening in my brain? It's like the synapses have a gap and don't communicate for a little while." So I explained the Lewy Body, etc
He's still trying to study his own symptoms while he still can... it's heartbreaking but I'm so glad he can still communicate at this level with me even if not all the time.

My husband was a research biochemist and I would have expected a scientific curiosity about the disease but there is none. Not even in the early stages.