Re: sensitive - LBD - inherited?

October 9, 2003

Theresa: I'm interested in this area too, but also agree with

Courage's comment that there's little to be done if we HAVE inherited

it at this point, short of what we all might do to prepare for

growing old. I already find myself worrying if I'm having a day when

words don't come as easily as the usually do or if I stand up fast

and get light headed or if I stumble over something and I know that

for me I have to just let it go 'cause I think the worrying about it

would surely make me crazy. Do you see something constructive that

can come of it that I'm missing? I'm more than a little curious

about the genetic connection for myself, my brothers and my son, but

just can't find my way to going over it for the fear that it will

just cause worry and little else.

> Theresa,

>

> I, too, am interested and it used to keep me up at night but no

longer.

> Since there is very little I can do to prevent a dx I have had to

accept

> that this may happen to me. I hope that the meds we will have

available

> will do better.

>

> My siblings and I have discussed this and we have made plans for

what should

> happen if any of us get this disease. Also, a living will is a

good idea

> because I don't want my children to care for me. As soon as I

start to show

> signs that I can no longer care for myself my children have been

instructed

> to send me to a LTC facility. It should take most of the pressure

off their

> shoulders.

>

> Also, I remember a conversation on the list a while back where it

was said

> that it would be interesting to find out how many of us currently

posting

> will develop LBD. Perhaps I will put something down in writing

that my

> family is to contact this group - even if I no longer post - to

inform them

> should I get an LBD dx. Would anyone else here be interested in

doing this?

> Courage

>

> sensitive - LBD - inherited?

>

> >

> >A while back a had a email conversation with Russ about the

> >genetic factor of LBD. The gist of what he said was - you

> >are more likely to have LDB/AD from the age factor than from the

> >genetic/familial factor. RUSS - correct me if that's wrong!

> >But at the same time those with early onset of LBD in the family

> >may have a higher likelyhood of being DXd later in life than the

> >general population. (I don't think I could fit more qualifiers

> >in that sentance if I tried.) 8-)

> >

> >I know not everyone wants to think about/deal with this. But I do.

> >Anyone want to have a discussion - here - offline -?

> >

> >THeresa

> >ptah@h...

> >

October 10, 2003

Warning - long ....... two parts - what we do for ourselves in case

is ther anything we can do for

early detection

Do for OURSELVES -

I agree, make sure we have adequate insurance, wills, keep up on

the latest research, educate others to the disease, take care

of ourselves, enjoy everyday, and learn something new everyday....

Early Detection -

This may be way off base or just plain crazy.....

One of the things I find helpful here is the discussion of the

'symptoms' of LBD. Some of them are 'scientifically recognized'

such as the tendency to fall. Others aren't 'scientifically

recognized' such as the runny nose.

One of the things we seem to agree on is the earlier the correct

DX the better, sice some of the drugs like Aricept and Exelon

work better in the early stages.

I have brought this up before.... Russ is working on a Predictors

Study which is focusing on the what will likely happen to those

already DX with a dementia.

Assume this is a long term disease, like it may be developing

for years before the patient shows any funtional symptoms. By

that I mean having trouble doing the usual functional tasks.

I think, the patient may be spending years fooling themselves

before they spend years fooling their family and close friends

and then years fooling everyone else.

Since the DX depends on the obvious physical/functional symptoms

the chances are the disease is working on the patient 10 years

before. What would happen if the patient was DXd earlier. Would

that give the patient 5 more years of independant living?

We know there is no simply blood test/x-ray/MRI which can DX LBD.

Is there any research on the non-functional stuff that may point

to either a predisposition to LBD or a early symptom?

Some things which have been kicked around in the last couple of

months include possible causitive agents like agent orange, heart

problems, BP problems, Thyroid problems or common symptoms like

runny nose, change in eyesight, sensitivity to light ......

As far as I know most of us are not scientists. So we wouldn't

be doing any scientific research........ BUT it might be helpful

to list the symptoms - scientifically recognized or not - and

maybe what helps the symptoms. 1.e. no blinking - eye drops.

And if interesting pops up we all know it. I'd also be courious

if some of the symptoms are present in us. I for one have the

don't blink thing..... I've had that for years. I also have

a nose that runs when I eat.......

Another thing I'd be courious about is, what types of questions

are asked by Russ and group in the Predictors study.

Definately enough ramblings for now!!!!

THeresa

October 11, 2003

After reading all of the threads on this subjects I have a few

points to add. I often joke about this, but I am seriously sure I am

going to get this disease. I'm only 36 but I already have strange

symptoms, including balance problems, difficulty finding words,

short term memory, frequent visual hallucinations of bugs and cats

and stuff. (no, I dont do drugs!). I also think my Dad had this way

before it was dx, and even before Alzheimers was dx, and well before

we even thought it was something that should be investigated. He

worked for the RCMP with their computer systems and very suddenly

and unexpectedly up and retired one day. My mom & I both think it

was related to memory difficulties.

I believe in nutrition, but my Dad ate healthfully...fish every

Friday, cuz he said it was " brain food " , and he didnt smoke or drink

or do drugs. My dear grandmother led an exemplary lifestyle yet died

a horrible death because her colon and liver were full of cancer. I

guess what I am saying is that if you are predisposed to getting

something, nothing you eat or dont eat is going to prevent it. Some

people are anti-meds and pro-herbal. To each his own, but I am not

falling into the herbal craze. Just because something grows in the

ground does not make it good for you. If herbs were so great, the

medical profession would know and these things would be goverment

(FDA) approved. And as far as heart specialists go...they cant save

everyone. They can only get the message out there that we need more

nutrition, more exercize, less sodium and fat in our diets, no

smoking etc to keep our hearts healthy. Still you get incredibly

healthy people who suddenly have a heart attack. When the reason is

a mystery, they just slap the label " stress " on there. Not to be

morbid here, but we are all going to die from something, you cant

live forever. In short, I think what I am trying to say is yes, take

care of your body and mind but dont do anything to the extreme.

Who's to say in 20 or 30 years time they wont discover that the

people who are taking some herby thing like Ginko Biloba daily right

now wont all have brain problems like LBD or some other health

problem?

Just my two cents!

-Coyote

>

> A while back a had a email conversation with Russ about the

> genetic factor of LBD. The gist of what he said was - you

> are more likely to have LDB/AD from the age factor than from the

> genetic/familial factor. RUSS - correct me if that's wrong!

> But at the same time those with early onset of LBD in the family

> may have a higher likelyhood of being DXd later in life than the

> general population. (I don't think I could fit more qualifiers

> in that sentance if I tried.) 8-)

>

> I know not everyone wants to think about/deal with this. But I do.

> Anyone want to have a discussion - here - offline -?

>

> THeresa

> ptah@h...

October 12, 2003

Hi Ilse..I agree with you there, that not enough is being done. But

because I dont have the answer to how to prevent LBD or what on

earth causes it...for now, I have to rely on drugs like Aricept to

help my Dad with the symptoms. For all we know, this could be a

disease that skips generations and has nothing to do with something

that occured in the lives of our LOs, but rather a gene that is

carried and passed to children or something. So there is the

possibility that people are born with it, but it doesnt manifest

itself until mid or late in the life span. I think there should be

an LBD Society as big and well known as the Cancer Society, and

separate from the Alzheimer Society.

What bugs me is that if someone smokes and drops dead from

cancer..we have an excuse for their death. If someone weighs 350 lbs

and has a massive coronary, we have something to blame it one. It's

obvious to us....but this disease is so incideous (sp?) and sneaky

and we dont know what to blame it on.

> Just wanted to add too, if you can avoid cancer and heart disease

why

> cant you avoid LBD? No on is born with LBD so something happened

that

> started the degeneration into the condition. What that is needs to

be

> found out. At the moment the medical world just seems to be

looking at

> trying to help the symptoms when they have appeared, which maybe

can be

> a great help, ( when they find something that helps greatly) but

lets

> not stop there. My beef is that not enough research is done to

> understand why sufferers started to degenerate into the condition.

> We would be thought ridiculous if we only treated the symptoms of

> scurvy without looking at the cause. In my opinion we are doing

the

> same ridiculous thing with most diseases. However until we find

the

> cause, ofcourse we should try to alleviate the symptoms, but lets

see

> some research at the other end.

>

> Never ever think that any disease can not be avoided. How might be

an

> answer out of our reach for a while longer, but just never believe

that

> the answer cant be found. There are genetic and neurological

> conditions that have been reversed that were always thought

medically

> impossible. You can only think with your limited knowledge. That

doesnt

> mean the actual doesnt exist. It is just that you dont know about

it.

>

> I have heard of cases of Alzheimers improve, so why not LBD? Just

leave

> it open otherwise we will not continue to look.

>

> Ilse

>

> Begin forwarded message:

>

> > From: " Hodgson " <james@v...>

> > Date: Mon Oct 13, 2003 5:49:52 AM Australia/Melbourne

> > To: <LBDcaregivers >

> > Subject: RE: Re: sensitive - LBD - inherited?

> > Reply-To: LBDcaregivers

> >

> > Hi folks,

> >

> > Just wanted to comment on something Beth said,

> > She commented that you can avoid heart disease and cancer but

not LBD.

> > Ok so

> > you can reduce your risk of heart disease or cancer but you can

reduce

> > your

> > risk on dementia too. Go read a book called " The Memory Cure " by

Dr

> > Majid

> > Fotuhi and he'll give you his thoughts. Evidently he's a

colleague of

> > Russ.

> > (He works at s Hopkins...)

> > The very rough theory is that most of the stuff they tell you is

good

> > for

> > your body will improve your risk of suffering dementia too. But

there

> > are

> > other, more specific things that seem to make a difference.

> > Even if LBD does turn out to have a genetic or hereditary