Help for Keli,

October 5, 2007

Hi Keli,

I am sorry to hear that things are so tough for you with the Dr. Most Dr.

don't know squat about LBD. It seems that we are the ones finding what the

disease is and telling them instead of them telling us. You would think that

for all their schooling they would know something about it. I am sorry if I

sound angry, but we have to be our own advicate sometimes. There is so much info

on LBD on their website. They are pages and pages of stuff. When my husband

learned of LBD from someone who worked for the AZ. assoc. We knew right away

that was my mom they were talking about. Her picture may as well been posted.

It was very clear to us what she had. We called her geriatric Dr. and he didn't

know alot about it. We are the ones getting the word about to the Dr. I know

it is very hard for you. I am waiting for my to pass any time now. I know how

difficult it is. I hope you find the right Dr. so your mom can get what she

needs. You are a good daughter and I can tell

you are loving and caring. God Bless you!

Lynn S.

---------------------------------

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October 6, 2007

Thank you so much for taking the time and for thinking about me and mom. What

you have written is EXACTLY how I feel and what I've been thinking. How can this

be? How can all of us have more knowledge about this disease than the doctors

that have gone to school for like 1/3 of their lives or something. It is very

frustrating. I might be wrong, maybe mom doesn't have this disease but after

doing much research it's the only thing that makes sense and when I listen to

all of you it makes even more sense. My husband and my children have all agreed

that everything on the LBD website describes my mother. I'm not going to stop

trying to find a doctor that will actually treat her carefully the way she

should be but even if they never make an LBD diagnosis I will follow what they

(the professionals and you all) say about carefully medicating and such as I'm

the one who actually gives meds to my mom and keep her meds put away.

I am so sorry to hear that you are going through the toughest part of all of

this. I had probably read that before but there are so many people that are new

to me that I have a hard time remembering what each persons circumstances are.

May God be with you and your mom and give you peace.

Thanks again and take good care of yourself.

Keli

Lynn wrote:

Hi Keli,

I am sorry to hear that things are so tough for you with the Dr. Most Dr. don't

know squat about LBD. It seems that we are the ones finding what the disease is

and telling them instead of them telling us. You would think that for all their

schooling they would know something about it. I am sorry if I sound angry, but

we have to be our own advicate sometimes. There is so much info on LBD on their

website. They are pages and pages of stuff. When my husband learned of LBD from

someone who worked for the AZ. assoc. We knew right away that was my mom they

were talking about. Her picture may as well been posted. It was very clear to us

what she had. We called her geriatric Dr. and he didn't know alot about it. We

are the ones getting the word about to the Dr. I know it is very hard for you. I

am waiting for my to pass any time now. I know how difficult it is. I hope you

find the right Dr. so your mom can get what she needs. You are a good daughter

and I can tell

you are loving and caring. God Bless you!

Lynn S.

---------------------------------

Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and

lay it on us.

October 9, 2007

Keli, Lynn, and others,

I know we all wish every doctor knew LBD well (or at least had heard

of it) so that our loved ones could receive the best treatment

possible. However, we must be realistic. Medical Science still is

in the early stages of understanding it, and many of our doctors

received their training before it was even heard of. True, they

should be keeping up on the latest. But there is so much new info

coming out on everything, and most of them are overworked and how are

they going to keep up on everything? We can't even keep up on taking

care of our loved one with LBD and our families and housework, know

what I mean?

The guy I finally found to diagnose my mom is one of the top

neuropsychologists in the US, Puente, in Wilmington NC. I

was just lucky he happened to be in our city. Otherwise my mom might

die without ever having a professional diagnosis. And the only

reason I even heard of LBD and knew to pursue it was word of mouth

from a friend of my husband, whose step mother had it.

So actually, when I think about it, I am one of the lucky few who

this early in the medical community's understanding of LBD even knows

(1) that it exists and (2) that my mom has it and (3) a little bit of

how to treat it.

After I finally got the diagnosis, then my mom's geriontologist

finally started to give me some respect and is now agressively

working on helping my mom.

I know it is hard to be patient, when we see our loved ones suffering

so. But a few years from now, for others, it will be better. And

partly because of all we went through, and our determination to

educate our doctors.

Love to all of you,

Gurganus

> Hi Keli,

> I am sorry to hear that things are so tough for you with the Dr.

Most Dr. don't know squat about LBD. It seems that we are the ones

finding what the disease is and telling them instead of them telling

us. You would think that for all their schooling they would know

something about it. I am sorry if I sound angry, but we have to be

our own advicate sometimes. There is so much info on LBD on their

website. They are pages and pages of stuff. When my husband learned

of LBD from someone who worked for the AZ. assoc. We knew right away

that was my mom they were talking about. Her picture may as well been

posted. It was very clear to us what she had. We called her geriatric

Dr. and he didn't know alot about it. We are the ones getting the

word about to the Dr. I know it is very hard for you. I am waiting

for my to pass any time now. I know how difficult it is. I hope you

find the right Dr. so your mom can get what she needs. You are a good

daughter and I can tell

> you are loving and caring. God Bless you!

> Lynn S.

>

> ---------------------------------

> Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s

user panel and lay it on us.

>

October 9, 2007

Dear ,

I agree with you about all of this, though sometimes it's so frustrating that

I just have to spout off about it. Both of mom's doctors have heard of LBD but

they both say that they don't think she has it because she seems to lack the PD

symptoms of it. Though at home she does have more of them than they have seen

and though I have said this to them they say what I describe isn't really PD

symptoms. Though neither have a good explanation as to what exactly she has ,

just some type of dementia and they lean more toward AD with paranoid

tendencies, schizo type (which she evidently developed at the age of 72, which

is basically unheard of) As for having AD I'm almost positive she doesn't.

anyhow...like I have said, I could be wrong, maybe she doesn't have LBD but

everything I have read about this disease describes my mother almost to the

letter. I'm hoping to find a dr. that will diagnose her with this or else make a

firm diagnosis about exactly what she has.

I'm glad that you were able to find a good doctor right away. I live in Myrtle

Beach pretty close to Wilmington. I wonder if your doctor is seeing new

patients? It would well be worth the trip to me.

Take good care of yourself,