To June...

[Guest guest]

Oops - sorry June! I'm so bad about changing the Subject line!

They seem to feel NOW that the Lewy dx is pretty set - along with a frontal

temporal involvement component as well. My Mom is a pretty atypical case

all the way around. Totally slammed with the disease almost out of the blue

over a very short period of time. What is pretty unusual is that as a

teenager in the mid-1950's Mom was part of an experimental treatment at UCLA

for severe cystic acne. The treatment was prolonged radiation exposure - to

the point that the face was actually burned - then the skin was scraped off

and then allowed to heal up. My uncle has told me that Mom would come home

and lay in her bed and try not to move and quietly weep from the pain of it

all for the next 2 or 3 days. Then, they'd do it all over again. We've

heard from several health care professionals that it's known that a certain

sub-section of the test group have experienced thyroid disease -

hypothyroidism and some abnormal growths - i.e, tumors. Mom was one of

those who experienced that, and in at age 36 had 2/3rds of her thyroid

removed. We learned only in the last year that some of those who took part

in the treatment also experienced early-onset dementia.

FTD was actually the first leaning, there was some talk of Creutzfeldt-Jakob

disease, and now and then someone would say something along the lines of,

" Or maybe it could be Lewy Body. " It wasn't until the neurologist put

together the WHOLE picture (20+ pages of med changes and atypical responses

to them) that the Lewy dx became the front runner.

Nope - no Scandinavian. A little bit of everything else, though! :-) I do

wonder, though, if most LBD patients have a family member somewhere in their

family tree with a dementia dx. We've been trying to find ANY to determine

if there's any family history at all - and after several hundred years of

taking the family lines back, we have yet to find any indication of any yet.

Can't help but wonder if any of Mom's descendants will present with any..

Blessings,

dina

Open BPD/DS July 2, 2002

Dr. Aniceto Baltasar in Alcoy, Spain

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