When does your LO know they have LBD? also attn: marcia in florida

[Guest guest]

hello everyone,

 

my name is sharon andersen murray, by the way, those who know me this is my new

emil address   ladyandhertramp@...   so please update your addy books

accordingly. 

i am from pensacola florida, and my then fiance' now husband ) moved down from

tenn to pensacola florida to take care of my daddy.  at the time we didnt know

what ws wrong but he had extreme shakes on his right side,  the parkinsonisms

that lbd'ers are known to have,  well in may 2004 he totally lost his cognition,

i didnt know what happened eventhough i am a professional patient *i am in stage

3 of kidney failure* and worked for a neurosurgeon in tennessee for 5 years. i

knew daddy had something unusaul after 2 weeks in icu and 3 more weeks in

regular room and 8 weeks in rehab.  when he was in icu a weekend fill in doctor

was the first to mention lbd and i had a laptop and got online immediately, 

fluctuating cognition, unexplained falls, parkinsonims shakes, right down the

line of symptoms was my daddy. well daddy had enough aware time that i printed

out all the info i could, now in 2005 the prognosis was death within 2 years of

diagnosis, and

thanks to the wonder of editing, i deleted that part as dad was depressed and i

didnt want to add to that, what he didn't know didnt hurt him, the doctors

called it lewy body disease which daddy couldnt remember so he called it the

little man in his head.  and he hated that little man becuase it would make him

say and do evil things, i was the victim of his dr jekyll mr hyde mood swings 

but nurses and doctors kept reminding me that i got the worst of his disease

becuase i was the one he knew deep in his brain that he could trustno matter

what, that made the accusations of being a whore a thief etc A LITTLE EASIER,

but it still hurt alot now my donnie, daddy treated him like gold whenever he

was out of town viisting his family he went to pieces and i got the worst of

it,  there were many nites i talked to people on this group all nite long trying

to keep my sanity in place until donnie came home.  we quickly learned that

daddy was able to tell time

enough if we were late, by even 5 minutes and his fears and anxieties kicked in

so we learned to tell him 1/2 hour later than we planned on being home, and also

donnie would tell him 1-2 days later than he planned on being home.  that kept

some of the lewy rages and fears in check. 

 

i am over 9000 emails behind, so let me say hello to all the new folks, welcome

to your new family   US, and those who have lost loved ones, i am sorry i know

it is very difficult, but you need to remember that your loved one is no longer

suffering and you really lost him/her a long time ago before lbd got bad. Just

try to remember the good times and let the bad times drift away, believe me it

takes time but those not so pleasant drift away. 

 

marcia,

i tried to email you but it bounced, i am so sorry you couldnt reach me when you

needed me, butif you wish to talk and use me as a sounding board email me

personally and  i will be glad to give you my new phone number and talk with

you, i have a cell phone for lbd and my parttime business and have lots and lots

of minutes on it so feel free to use it whenever you need me..   i am sorry for

your loss,

 

hugs to all sharon

Subject: Re: When does your LO know they have LBD?

To: LBDcaregivers

Date: Thursday, June 26, 2008, 1:49 PM

I have been mentioning Lewy Body Disease around my husband for quite a

while. So the other day I explained to him that he has Parkinson's

and Lewy Body Disease. He is becoming more aware of LBD and like you

I say disease not dementia. I asked if he wanted to watch Good

Morning America yesterday and he said he did. Well.... dementia was

said more that once on GMA and Bob said nothing in response. We will

see if it just take a little while for it to process.

My reason for initially not mentioning dementia was that 2 years ago

just before Bob's dad passed away he was in the hospital. He

introduced Bob to a staff member and said he has Alzheimer's. As we

left the hospital Bob said, I sure hope I don't have Alzheimer's.

Lorraine

husband 57 diagnosed with PD 2002, has LBD symptoms

>

> " Holly, I also wanted my husband to know what he has, except that

I've asked his doctors not to call it " dementia " but DISEASE. Dementia

has a tone of craziness to it that sounds horrible.

> Hang in there! Love,

> Raquel "

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