Re: diagnosis LBD???/Barbara

[Guest guest]

Hi Barbara,

In answer to your questions about diagnosis of LBD.

You are right, there is no sure way to tell until an

autopsy is done or a brain biopsy, but if you go to:

http://www.lbda.org you will see on the right hand

side Core LBD Symptoms, scroll down and click on " For

more information " In Oct. 2005 updated criteria for

the clinical and pathologic diagnosis of DLB or LBD.

Scroll down again and it will tell you how doctors

diagnose LBD under Lewy Body Dementia Symptoms and

Diagnostic Criteria.

Before the update in 2005 the definition of the

clinical assessment criteria was made as early as

1996.That was the first criteria.

So when some of us say they noticed years in advance

that their LO displayed Lewy Body Symptoms, they are

going by the symptoms detailed in the criteria.

If you click on " LBD Information " it will bring you to

the brochure that has all the information and you can

print it. Jan Colello

--- Barbara Lyon wrote:

> Hello all,

>

> Boy I was surprised at the response that my

> comments (about my mother not being the perfect

> mother that some have been blessed with) got. It

> both hurt to hear that there were so many of you and

> was a relief to know that I am not alone.

>

> Not to bore any of you about my mom and I am sure

> that I do go on too much but my mother thinks that

> she was a perfect mother. At least she behaves as if

> I remember every thing wrong and that i am the one

> that needs psychiatric help. Some times she has been

> successful at convincing " social workers " that I am

> the problem.

>

> Last summer I was her guardian because she had been

> in the mental hospital and the courts had declared

> her incompetent. She convinced a doctor that she was

> completely competent and got him to sign paper work

> that verified this and the courts rescinded the

> incompetent stasis. She convinced the doctor that

> she was ok and that they ahd just put her in the

> psyc ward because she was old. I left because she,

> behind closed doors always , was hitting me spitting

> in my face and was destroying my clothing and on and

> on.

>

> The social workers from the division on aging

> helped her working with her doctor get the

> competency stasis back. I left for that great job in

> Alaska (as far away as I could get from Ohio and

> still be in the US). In less than 6 weeks my mother

> was back in the hospital for her bizarre behavior.

> ie Sitting in the driveway at 2am, yelling at the

> neighbors and so on.....crazy stuff. The social

> worker came to her rescue saying that she had a UTI.

> and so on and that that she once again was being

> misunderstood and that people wer ignoring her and

> over looking her because she is elderly. Mother was

> put on anti-psychotic drugs and came home. She

> almost died with side effects(neuroleptic malignant

> syndrome).There wer nurses and social workers

> comming in two or three times a week and they did

> not help her as she plummeted to the point where she

> could not walk or go to the bathroom. I was in

> Alaska and my daughter had to callan ambulance to

> come and get her nad take her to the

> hospital. My daughter lives in California and mom

> in Ohio. She was then put in a hospital and taken

> off of her anitpsychotic meds and put in a NH for

> rehab.They at the rehab did not know why she was

> there just that she needed rehab. She called me and

> begged me to come from Alaska and as i said in the

> other post I did. Like a fool. Thinking she would

> stay the way that she was nice and letting me do

> what needed to be done.Like an idiot I took her out

> of the nursing home and she prommissed she would

> give me POA so iI could pay the bills. She did not

> do that.

>

> Now she has gotten well again and is driving and

> being awful to me .

>

> I think that I must leave here because I just

> cannot live like this and she swears that she is

> able to take care of herself. She will not let me

> have power of attorney and there is no way that I

> will ever go through the hell of being her guardian.

> The lawyers the courts the ongoing crap from her

> .Like not being allowed to leave my room and use the

> shower and the physical abuse. And the never ending

> theam of me being the crazy one and I am just here

> to live off of her and steal her stupid f.....ing

> money.

>

> Like I said i am ruined as I gave up my little home

> have spent all my funds and have given up three

> great jobs to help her.

>

> What i started out to ask is about this disease.

>

> I often see that you all have a diagnosis of LBD.

> Now as an RN for 35 years I know that people are

> often misdiagnosed. I also know that doctors have to

> provide a diagnosis for legal and insurance reasons.

> But there are real medical diagnoses and that is

> what I am confused about.

>

> I was under the impression that the diagnosis of

> LBD could not be confirmed until the patient was

> dead and the bodies were found? Can some of you help

> me out with this confusion? I note that many of you

> are sure that you or your loved ones have this

> disorder. And you seem to be sure of this diagnosis.

> How is that that you are sure. I do not undeerstand

> is there a number of symtomes that assures that the

> diagnosis is likely? I often have noted in the posts

> that people say that in retrospect I see that my

> loved one had this disease for many years before the

> diagnosis.Could some of you explain how that is?

> Thanks Barbara

>

> Janet Colello wrote:

> Hi,

> I am in the process of putting Jim into a study

> program on dementia at the University of San

> Francisco. At the Symposium in DC they, the

> researchers, mentioned that they need live studies

> done and seem to have many brain autopsies, which

> they

> DO need, but stressed that they need people in

> study

> programs, that they can study now while living and

> that not enough neurologists and doctors are asking

> patients to volunteer in these programs or even

> making

> them aware of the programs. Jim many years before I

> knew him got his things in order for his death and

> decided that he wanted his remains to go to the

> University of San Francisco as a Cadaver. So they

> will

> already have a study on him too in the end.

> I don't know if they can do a brain autopsy on him,

> since there is something mentioned that no organs

> can

> be removed from the remains for the study of the

> cadaver, but maybe something can be worked out, I

> don't know. Jan

>

> Jan Colello, wife of Jim, dx w/Parkinsons 1993 and

> LBD 2003San Francisco Bay Area, California

>

> __________________________________________________

>