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 My father is newly diagnosed 
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Re: My father is newly diagnosed
Thank you everyone, and especially Cara. I read the Boeve paper and it was quite helpful. I have some hope that medications may help my father. I will bring this up with his neurologist soon. (Someone asked who his neurologist was. It is Dr. Steven Cohen.) I am still unclear on whether he has PDD or LBD. His tremors and cognitive symptoms seemed to appear at the same time. Both were very mild for 3-4 years, then suddenly last summer he started walking with a shuffle and having significant cognitive difficulties and delusions. I have also just been told by a former companion that he had significant sleep disturbances regularly as long as four years ago.

I hear a lot of people saying it doesn't matter which one my father has, but then also I hear people saying that life expectancy is much longer with PDD. So I don't know whether I should keep trying to get a diagnosis of one or the other. I guess it's the kind of thing you have to deal with on a day by day basis anyway, and it's not worth worrying/trying to predict the future.

My father has been a difficult person to deal with most of his life. I have now been with him for more than two months and feel that despite his dementia, I am getting to know him better than I ever have before. This is a silver lining I am thankful for.


Tue Mar 22, 2011 5:34 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My father is newly diagnosed

Dr. Tom Graboys is not a neurologist. Further, his book was written for laypeople. So I don't take it as the gospel of anything except one person's experience.

I hosted an event in California several years ago for Dr. Graboys. I asked why he mostly used the term "LB Disease" or "PD with LBs" in his book. He said he doesn't like to use the word "dementia." He prefers the word "disease." He doesn't want to be labeled as a demented person.

Lewy Body Disease, Lewy Body Dementia, and Dementia with Lewy Bodies are overlapping concepts and not interchangeable terms. There are several LB diseases - Parkinson's Disease, PDD, DLB, and PAF (Pure Autonomic Failure). LB Dementia is an umbrella term that includes with PDD and DLB. Upon brain autopsy, if you have PD, PDD, or DLB, the diagnosis given is "XYZ LB disease," where XYZ is brainstem, incidental, transitional, or diffuse. It depends on *where* in the brain the LBs are.


Tue Mar 22, 2011 5:44 pm

Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: My father is newly diagnosed

Glad you found this site. Sorry you had to. There is a silver lining. My mother and I became much closer. My mother was a very difficult person too! My story is long as are all. I feel very blessed that even with this terrible disease we realized our love and devotion to each other.

You will too! Take care,
Sharon E.

Wed Mar 23, 2011 11:25 am
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