Sharon A-M part 2

[Guest guest]

hi all,

sharon here again,

my first letter was how i was introduced to lbd, this letter i write to you with

a very heavy heart. I have been diagnosed with 99% probablility of lbd, my

father had it, and doing a family histroy two of my dads uncles had it, one of

his aunts, back then it was called senility or nervous breakdwon but i was

around all of these aunts and uncles and see the similarity between them and my

father. and my aunt,my dads sister also beleives my male cousin 47, i am almost

49 is starting to show symptoms.  and also my moms brother, he had a brain

autospy done and i was just recently told he had lbd.

when a group of us went to wash dc for the parkinsons lbd symposium put on by

the michael j fox foundation. well they had a doctor who said that there are

only 2 varieties of lbd that are hereditary. the varieties being where your

heritage is, italian and scandinavian.

and you cant get much more scandinavian than me. my paternal grandparents were

from denmark and sweden and 3 of the danish aunts/uncles looking back had lbd,

plus my dad but he was born in brooklyn ny. my mom is from finland and her

brother is teh one who had the brain autospy done confirmed lbd. these two forms

of lbd have been known to start 5-10 years earlier in each generation which is

where i am compared to daddy when his symptoms first showed.

 

those of you who have been on the group for a long time noticde my typing is

geting worst and my word choices. i have a pituiatry cyst so i have a brain mri

ever 18 months and teh radioligist noticed and called my md that for 48 years

old i am having abnormal brain shrinkage, moreso frontal but in other places

too. so my records were referred to dads neurologist since he arlady knew daddys

history and i saw him and had eeg, another mri, ct, and with my unexplained

falls, unusal reactions to not only medicines i have been taking regularly as

well as new mediine they put me on.

 

i have a wonderful circle of friends here in this group that have already known

about this and a wonderful circle of friends here in pensacola who all know what

i went thru with daddy and have all said that when i get to where i need alto

more help than i do now will all be here to help donnie. we have already

discussed adn with the FIVE WISHES i have put in writing all my wishes and

wants/needs.

 

so now i am here on this wonderful group not only as a former caregiver but a

future caregivee. i know daddy had lbd for almost 10 years before he gotwhere he

couldnt be by himself, and was diagnosed, i am not currently on any meds for lbd

becuase i am on alotof medicine for my kidney issues and each of my doctors are

researching the medicines they have me on and lbd and lbd medications, for my

speicalists right now except for neurologist i trael 6hours to jacksonville

florida to universtiy of florida/shands. i have a great friend from this group

who lives there and gave me my own key to her home that says HOME and my best

friend of 15 years is only 3 hours away from there. she lives in SC 

well all this typing is wearing me out, hugs to al, sharn a-m