- no subject post

[Guest guest]

Welcome to the board - be sure to visit the site, we have a

links section that supplies you with tons of useful info. You can get

there via the link in my signature -- to answer your questions:

Interested in hearing your experiences as regards:

1. Whether anti-Parkinson's drugs worsen the dementia (My mother

isn't on anti-Parkinsons drugs -- thought it could make the

hallucinations worse if she were on them)

2. Whether the nature and subject matter of hallucinations change

(Not sure, my mother predominately hallucinates my deceased

father, " two beautiful red-hair boys " , and a cat -- the last one

during one of my visits were of a horse & cow -- which was new. And

then a bear. But -- those latter ones were after saying/thinking the

words " horse " " bear " . I was doing a finish the phrase word game with

my mom and the phrase was " Eat like a... " - even though she didn't

say " horse " (said " " instead as a joke) it was shortly

thereafter that mom saw the horse. The other example was the massage

therapist was telling us the story of her seeing a baby bear during a

recent vacation -- shortly thereafter mom saw a bear. I thought it

interesting that just saying or thinking a word would trigger a

hallucination...)

3. Incidence/Coincidence of other diseases (particularly myeloprolif

disorders) in addition to LBD.

(Not sure of this either -- but the bulk of our LOs has High Blood

Pressure and at the same time it bottoms out -- will have to start a

poll on that one...)

4. Any anecdotal/clinical evidence of heritability of LBD and other

associated disease.

(They're not sure of LBD's heritability -- that is what I heard last -

- my mother has two Aunts who died of ALZ, yet an autopsy wasn't

done - so who knows. They're children have yet to visit my mother -

which I wish they would - would be interested in knowing the

similarities / differences between their mother and my mother.)

5. Any clinical trials or research opportunities that could benefit

those yet to travel this path.

Here: http://www.clinicaltrials.gov/ct/search?term=Lewy+Body+Dementia

Thanks for posing such interesting questions...

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy); as of 4/21 on Exelon (a/o 6/28 began following the

suggested dosage for LBD); as of 7/1 went on ALA (200 mg) and B1.

Visit the LBDCaregivers board on the web:

http://groups.yahoo.com/group/LBDcaregivers/

(See files, suggested links, databases, photos of members, and search

previous posts)

>

> Hello all,

>

> My 89YO father-in-law (FIL) was recently dx'd with diffuse LBD but

has

> been symptomatic for months/years. Additional unrelated(?) health

> issues include hereditary hemochromatosis, type II diabetes, and

now

> possibly myelodysplastic (anemia) syndrome. His son (my husband)

has

> another myeloproliferative leukemic disorder (CML).

>

> Interested in hearing your experiences as regards:

> 1. Whether anti-Parkinson's drugs worsen the dementia

> 2. Whether the nature and subject matter of hallucinations change

(My

> FIL's hallucinations have been largely pleasant and, as is

apparently

> typical, involve animals and people.)

> 3. Incidence/Coincidence of other diseases (particularly

myeloprolif

> disorders) in addition to LBD.

> 4. Any anecdotal/clinical evidence of heritability of LBD and other

> associated disease.

> 5. Any clinical trials or research opportunities that could benefit

> those yet to travel this path.

>

> We are scientists/medical types and are, on the whole, pretty well

> fascinated by this journey.

>