Re: Congratulations

[Guest guest]

I am shocked to learn that LBD moves so fast. How far along was your

sister-in-law when she was diagnosed?

My husband is losing it so quickly, lately, that I'm wondering if I can

expect the same.

I've already created a place in the bedroom in which to keep his supplies.

So far, he's not incontinent but today, he had such urgency as we were

trying to get from the car to the store, that he had the choice of wetting

his pants right there or, of hiding behind the car door and going there.

This has never happened before.

One minute, he " freezes " and can hardly use his walker and a minute later,

he can hold the walker up off the ground and carry it with him. One minute,

he doesn't know where his arm goes in the armhold and the next, he makes a

cute comment that requires a lot of awareness.

He still hasn't been formally diagnosed. We've been so busy trying to find

out why he's declining so rapidly. He has pain in his abdomen and we've

been running from test to test. I don't know if there's any connection.

I am especially wondering if he is " playing me " to get attention?? My

cousin doesn't think he's as sick as I think he is. I can't imagine anyone

even being able to think up all these symptoms.

Arlene in Boynton Beach, FL

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[Guest guest]

In a message dated 2001-12-28 11:57:50 PM Eastern Standard Time,

aallen329@... writes:

> I am especially wondering if he is " playing me " to get attention?? My

> cousin doesn't think he's as sick as I think he is.

This on/ off of abilities is common to LBD. Sometimes I wonder if it is

easier to bear when the loved one is 'not there'

[Guest guest]

>

>I am especially wondering if he is " playing me " to get attention?? My

>cousin doesn't think he's as sick as I think he is. I can't imagine anyone

>even being able to think up all these symptoms.

>

Arlene

This is one of the more painful things about LBD; because the symptoms come

and go we are always tempted to think that our loved ones are " pretending "

not to function--because sometimes they CAN. Even physicians sometimes

treat the patients as malingerers rather than truly ill.

It might help to find some way to educate your cousin on the symptoms;

maybe list readers can suggest their favorite links.

Christie

[Guest guest]

Arlene,

For a period of several months, there was absolutely no decline in

my husband, cognitively or physically, and I thought that we were

going to be graced by a very gradual decline....giving us time to

come to acceptance as well as making the needed adjustments.

Then, the past 3 months he has declined so rapidly, I find myself

reeling in disbelief frequently. This period may....as it has for so

many others.....be followed by a period of very slow decline, again.....

but then again, it may not. Typical of this disease.

It is difficult enough for us who are with our LBD'ers constantly to

grasp the sometimes rapid fluctuations which take place within

the larger picture I have described above. After dealing with feeling

like " the crazy one " who imagined things, I have come to accept that

there is no way I can expect others to understand my husband's

disease.

Hang in there! Mai-Liis

[Guest guest]

>In a message dated 2001-12-28 11:57:50 PM Eastern Standard Time,

>aallen329@... writes:

> I am especially wondering if he is " playing me " to get attention?? My

>cousin doesn't think he's as sick as I think he is.

>

>This on/ off of abilities is common to LBD. Sometimes I wonder if it is

>easier to bear when the loved one is 'not there'

I second that thought. My husband gets so confused and disoriented and yet

can be so aware in those areas of this life that were his " expertise " ,

namely psychoanalysis. So he can have a lot of insight into someone's

behavior, although now he expresses it more simply and then also not know

what day it is. So many of us thought, at first that our loved ones were

" faking it " . Encourage your cousin to learn more. One place to start is our

website: www.lewybodydisease.org.

This is the saddest thing about this disease, and what distinguishes it

from Alzheimer's: that the person is aware of what is happening to them for

so long. Imelda

To learn more about Lewy Body Disase, please visit the Lewy Body Disease

Association site at: http://www.lewybodydisease.org

[Guest guest]

In a message dated 12/28/01 10:57:48 PM Central Standard Time,

aallen329@... writes:

> I am especially wondering if he is " playing me " to get attention?? My

> cousin doesn't think he's as sick as I think he is. I can't imagine anyone

> even being able to think up all these symptoms.

That is classic, Arlene! I have heard so many people say that in the

beginning they thought the patient was " putting on. " In my own experience,

there were people who thought I was the sick one because Bob could at that

time pull himself up to acting as if nothing was wrong. I still see him do

that with his mother. He also sounded so good on the phone that my own

mother told me to leave him alone!

I know what you mean about the fluctuations in performance, too. That ol'

roller coaster ride.

Cheryl