- Rate of decline in LBD

[Guest guest]

,

That's the question we'd all like to know. Unfortunately, the

disease is so variable for each person. The " literature " on the

disease, states in general, from the point that symptoms converge

enough to form a diagnosis (which for my father took over 5 years!),

that the average is 5-7 years, but some people as few as 2 and

others as long as 20. Doesn't help much, I know.

I don't remember reading your father's symptoms... Can you share

with us what brought him to the doctor in the first place? Was it

physical or cognitive? What skills has he lost, what is he starting

to have difficulties with, etc...

You know about the project I'm working on; my goal, one way or the

other, is to ultimately define the stages of the disease. I've read

lots of abstracts on medical studies, and found one that compared

the rate of decline between AD and LBD. (There's been more than

one, with conflicting answers, in fact.) But this one identified

what appeared to be an early plateau phase, where only modest

decline occurs, then an accelerated phase where the bulk of changes

occur, and then a slower final phase.

I found it very curious, in fact, that the scientists we met with

asked me, " Why is it so important to know the stages? " And as a

caregiver or family member of someone diagnosed with that disease,

it's a no brainer! We need to anticipate their needs, set up

support for the changes in abilities and behaviors, and

appropriately provide information to their doctors so that they can

have the highest quality of life possible.

So, while sometimes it's hard to read what's posted here, it will

arm you with an understanding of the disease, which you will need in

order to support your father, up close or far away, and lots of

friends to support you, whether up close or far away!

> Hi,All,

> As some of you may remember, my father was diagnosed with LBD on

July 16,

> 2004. However, we all noticed symptoms for at least a year,

perhaps longer.

> He is 79. He will see his neurologist again on August 30. Quite

frankly, I

> am often afraid to read the emails from this brave group. I know

that

> everyone is different, but do any of you know how fast LBD

progresses on

> average? My son, my father's oldest grandson, is to be married on

April 16,

> 2005. It probably will be the only wedding of a grandchild that my

father

> has a chance of attending. In fact, he was aware of that even

before he was

> diagnosed with LBD. Even though my daughter is older and dating

someone, she

> isn't ready to get married yet. My youngest son is still in

college and

> doesn't even have a girlfriend. The rest of the grandchildren are

eleven

> and younger. My father loves to travel but it already exhausts him

to do so.

> The wedding is in Virginia; my parents live in northwest Texas.

Will my

> father make it in a condition to attend a wedding? Do I ask my son

to move

> the date up? I am very confused, and frightened now. I thought I

had at

> least come to terms with the diagnosis, but I guess I haven't. I

am trying

> to take it one day at a time, but unfortunately, events like

weddings must

> be planned in advance. Thank you for any words of wisdom.

>