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 "Pure" LBD (no PD) 
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post "Pure" LBD (no PD)
Can anyone point me to any information or research on people with "pure" LBD?

That has been Jerome's diagnosis and it is holding after five years of progressive DLB ... no symptoms or signs of PD at all (a PET scan also indicated there is no evidence of).

I'm trying to get some idea of how "pure" LBD progresses in comparison to LBD/PD? I've mentioned before that Jerome losing lots of cognitive ability, but physically (other than fatiguing easily, orthostatic and post-prandial hypotension, and severe skin problems) is holding up well.

What can I expect? Thanks for any info you can point me toward!

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Renata (and Jerome-in-Heaven)


Fri Sep 26, 2008 7:38 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Hi Renata,

This is my understanding: "Pure LBD" means LBD and no AD. "Pure LBD" is unusual. LBD usually occurs with AD.

To my knowledge, there are no clinical-pathological correlation studies of LBD, which would match up clinical diagnosis, symptoms, and pathological diagnosis. So...I don't know how you could tell, for example, how many people with a path-confirmed DLBD diagnosis never develop parkinsonism symptoms. I can tell you that in our local support group probably 80% of those with a clinical diagnosis of LBD do have parkinsonism symptoms.

On a related, technical point, many people say that their loved ones have a diagnosis of LBD/PD. In my mind, there's no such thing. You either have PD, PDD, or LBD -- any combination is not possible. Again, this is just my understanding.

Robin

Note: in the above email, LBD = Lewy Body Dementia. It does NOT mean Lewy Body Disease. Another name for LBD is DLB (Dementia with Lewy Bodies). I used the term DLBD in the pathological diagnosis because that's the term neuropathologists use -- Diffuse Lewy Body Disease.


Sat Sep 27, 2008 2:04 am
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Sorry, I must have been smoking a rope when I wrote my post. I meant to say Jerome is diagnosed with pure LBD, with no apparent symptoms of AD, and his PET scan also showed no evidence of AD. That's what I'd like to learn more about, or to find out whether any research entities would have an interest in Jerome's case because of this apparently pure DLB.

The PD is another matter. Other than a VERY mild hand tremor, he has not been found to be showing any symptoms of PD. Interestingly, Jerome's older brother has had PD for many years and is at quite an advanced stage, but no symptoms of PDD. It's like they split the package and each got one half. Would love to know if anyone has done any study on that.

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Renata (and Jerome-in-Heaven)


Sat Sep 27, 2008 6:28 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Hi Renata,

OK, the rope smoking explains all! I *thought* you and I were on the same page when it came to "pure LBD."

Could I suggest that you forward your question to Angela Taylor (ataylor AT lbda.org) and ask her to forward it to someone on the SAC to find out if there are any researchers in the US doing clinical research into "pure DLB"?

The genetics of Lewy Body Disease (PD, PDD, LBD) has come up a few times at some of the webcasts I've listened to. You could do a search on the terms "genetic" and "webcast" with the author "robin," and see what you get. I would contact those specific researchers who spoke about this.

If Jerome and his brother wanted to be studied, I'm sure you could find people interested as long as both patients could provide blood samples and commit to brain donation to a specific institution. Usually when families are studied, the researchers also want blood samples from non-affected individuals as well (who are blood relatives of the affected ones).

Robin


Sun Sep 28, 2008 1:26 am
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