Re: sensitive - LBD - inherited?

October 9, 2003

Dear Theresa:

We start out treating this subject with humor, but it is obviously a very

serious matter. I don't know how many people would want to discuss it here, or

how many people would wanto to not have to read about it. This may be a good

subject for an offline subject. We'll soon find out...

I pray for you and your family, Josie

October 9, 2003

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@...

>

October 9, 2003

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@...

>

October 10, 2003

I would like to add to this. What about early prevention instead of

early detection? The problem is everyone waits until they have a

dis-ease and then they run off to the doctors in the hope that with

their toxic medications they can somehow forcefully control the

symptoms. Why not learn how to keep all the systems healthy , what is

necessary to do that so that we dont degenerate into a disasterous

symptoms. I know it is a complete different thinking, but that is real

responsibility. Unfortunately the medical world doesnt educate us in

this, (mainly because they cant because they are not educated in it

themselves, Two hours on nutrition in a six year medical course doesnt

amount to much) so most people dont know how to go about it, and then

we are reliant on them when we are sick. As one person I heard once say

if the heart specialists were such specialists in how the heart works

for instance, they would be telling us how to prevent the heart from

deteriorating instead of trying to fix it when it is broken. We need

the " experts " to become expert in telling us how to prevent LBD and if

they dont then we should look into learning about health ourselves from

whatever sources that are coming from that direction. There are some

sources, but it is our own personal responsibility to look into it and

listen.

What do you think? Do you think that should be our each and own

responsibility instead of relying on the so called " experts " ?

Ilse

Begin forwarded message:

>

> Date: Fri Oct 10, 2003 11:48:59 PM Australia/Melbourne

> To: LBDcaregivers

> Subject: Re: sensitive - LBD - inherited?

> Reply-To: LBDcaregivers

>

> 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

am a wife therefore a great deal does not apply. My anger is what disturbs

me the most simmel

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@...

>

October 11, 2003

THeresa,

This could be interesting to some people, but it is just downright

scarey to me. If I knew that I would have to go through what our LOs

are now and have gone through.....I'm not sure that I would hang

around. There are ways to avoid heart disease and some cancers, but

not this aweful beast. I spend alot of my days trying to make her's

better, not looking to see if I will end up the same way. WAAAYYYYYY

too depressing, and I try NOT to live my life that way!.

Good luck,

Beth L.

> 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

Consider this a continuation of the last post..lol!

I use to come to this site to get information, and in the

beginning, I recieved plenty. Now, I find myself addicted and I have

to get away for awhile (from this site I mean).I will pray for all

of you and your LOs as the struggle continues.

May God bless you all,

Beth L.

> > 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

Yes, particularly with word finding and sometimes I feel like I'm

less stable on my feet -- but that could be lots of things, I'm

thinking.

> THeresa,

>

> Interesting. When I read your post it reminded me of what Russ

posted a

> while ago about the " worry well " - most caregivers start to forget

more

> easily or mirror some of the same symptoms of the person they are

caring for

> but once they stop caregiving these symptoms stop. Is there anyone