Re: How long, progression, expectations

[Guest guest]

Hello ,

My dad has varying periods of somewhat normalness. His normal including

excessive daytime sleeping.... probably 6 hours at least. Then he will have

periods where he hallucinates and is very confused - can't find the bathroom,

can't dress self or feed self. He falls repeatedly. He will stay like that for

varying amounts of time - once for 5 weeks. Then he will pop back into somewhat

normalness. During his normal periods, he can walk fairly well and do pretty

well bathing and dressing. Eating is always messy. I moved him into the nursing

home during that 5 week craziness period. Now he is back to his " normalness'

and he remembers nothing and can't understand why he needs to be there. It is

so hard listening to him beg to leave and live by himself somewhere. I think I

would almost find it easier if he would stay in one kind of condition rather

than bounce back and forth. It would be easier if he realized what was

happening to him.

He doesn't seem to. I wonder if others experience this bizarre difference and

if their LOs know or remember what happens during " episodes. " . I can't help but

wonder how long this back and forth behavior will occur. Will he have an

episode one time and not back bounce from it. There are just way too many

unknowns that make it so hard to make any kind of care decision.

Toni

> >

> > There is no known way to figure out how long anyone has.

> >

> > Usually it is 3-10 years " after " diagnosis. Mom was exactly 4 years after

her dementia diagnosis. Others do shorter or longer.

> >

> > Hugs,

> >

> > Donna R

> >

> > Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

> >

> >

> > How long, progression, expectations

> >

> > I wonder about the progression of LBD with parkinsonism. My dad has shown

symptoms for about 3-4 years but was just diagnosed in November 2010. He's had

three bad episodes with confusion/hallucinations within the last year but

" recovered " from them. I know there are no absolutes but is there anything I can

somewhat expect in the future? He is 83. He is not on any meds and I think he

really does better without them.

> >

> > Toni (daughter of , age 83)

> >

> >

> >

> >

> >

> >

[Guest guest]

, in many cases caregivers see LO's have a period of rapid decline

followed by regaining a little bit of the ground they lost. It sounds, though,

like what you see with your dad is a lot more extreme than usual. One question

I have is whether your father actually returns completely to the baseline he had

earlier. Most of the time there is a small recovery but they don't go back to

their baseline behavior. It's called " the new normal. "

Smiles, Nan

> > >

> > > There is no known way to figure out how long anyone has.

> > >

> > > Usually it is 3-10 years " after " diagnosis. Mom was exactly 4 years after

her dementia diagnosis. Others do shorter or longer.

> > >

> > > Hugs,

> > >

> > > Donna R

> > >

> > > Cared for Mom 3 years in my home and the last year at a nh. She passed

away from LBD in 2002.

> > >

> > >

> > > How long, progression, expectations

> > >

> > > I wonder about the progression of LBD with parkinsonism. My dad has shown

symptoms for about 3-4 years but was just diagnosed in November 2010. He's had

three bad episodes with confusion/hallucinations within the last year but

" recovered " from them. I know there are no absolutes but is there anything I can

somewhat expect in the future? He is 83. He is not on any meds and I think he

really does better without them.

> > >

> > > Toni (daughter of , age 83)

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Sorry, that should read Toni. Nan

> > > >

> > > > There is no known way to figure out how long anyone has.

> > > >

> > > > Usually it is 3-10 years " after " diagnosis. Mom was exactly 4 years

after her dementia diagnosis. Others do shorter or longer.

> > > >

> > > > Hugs,

> > > >

> > > > Donna R

> > > >

> > > > Cared for Mom 3 years in my home and the last year at a nh. She passed

away from LBD in 2002.

> > > >

> > > >

> > > > How long, progression, expectations

> > > >

> > > > I wonder about the progression of LBD with parkinsonism. My dad has

shown symptoms for about 3-4 years but was just diagnosed in November 2010. He's

had three bad episodes with confusion/hallucinations within the last year but

" recovered " from them. I know there are no absolutes but is there anything I can

somewhat expect in the future? He is 83. He is not on any meds and I think he

really does better without them.

> > > >

> > > > Toni (daughter of , age 83)

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

I would say that he bounces back to about the same level. It is very

mysterious.

Toni

> > > > >

> > > > > There is no known way to figure out how long anyone has.

> > > > >

> > > > > Usually it is 3-10 years " after " diagnosis. Mom was exactly 4 years

after her dementia diagnosis. Others do shorter or longer.

> > > > >

> > > > > Hugs,

> > > > >

> > > > > Donna R

> > > > >

> > > > > Cared for Mom 3 years in my home and the last year at a nh. She passed

away from LBD in 2002.

> > > > >

> > > > >

> > > > > How long, progression, expectations

> > > > >

> > > > > I wonder about the progression of LBD with parkinsonism. My dad has

shown symptoms for about 3-4 years but was just diagnosed in November 2010. He's

had three bad episodes with confusion/hallucinations within the last year but

" recovered " from them. I know there are no absolutes but is there anything I can

somewhat expect in the future? He is 83. He is not on any meds and I think he

really does better without them.

> > > > >

> > > > > Toni (daughter of , age 83)

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

It is mysterious. Just when you think you've seen it all....

Smiles, Nan

> > > > > >

> > > > > > There is no known way to figure out how long anyone has.

> > > > > >

> > > > > > Usually it is 3-10 years " after " diagnosis. Mom was exactly 4 years

after her dementia diagnosis. Others do shorter or longer.

> > > > > >

> > > > > > Hugs,

> > > > > >

> > > > > > Donna R

> > > > > >

> > > > > > Cared for Mom 3 years in my home and the last year at a nh. She

passed away from LBD in 2002.

> > > > > >

> > > > > >

> > > > > > How long, progression, expectations

> > > > > >

> > > > > > I wonder about the progression of LBD with parkinsonism. My dad has

shown symptoms for about 3-4 years but was just diagnosed in November 2010. He's

had three bad episodes with confusion/hallucinations within the last year but

" recovered " from them. I know there are no absolutes but is there anything I can

somewhat expect in the future? He is 83. He is not on any meds and I think he

really does better without them.

> > > > > >

> > > > > > Toni (daughter of , age 83)

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Hi all,

I know that this response it late, but I have been going through the medical

mill and actually had no time or energy at the end of the days to do anything

except take my pain meds and sleep.

My dear mom passed away from LBD...this wasw only 3 1/2 months from when she

began having noticeable changes and frequent hallucinations. I had to take

about 6 months off after she passed away, but then returned so that I could

learn more as I wanted to do volunteer work for the LBDA. I tried a few times

and I have some very serious spinal injuries and the surgeries kept putting me

back to not being able to help with the LBDA, but I stayed a part of this group

and added what I could and also learned a whole lot about LBD. I just recently

became a Lewy Body Dementia Support Group Facilitator for the Las Vegas Valley.

In my recent 'medical mill' experience, I have seen so many doctors and many are

specialists. I brought a packet of info to each of them when I went. It is

intersting what doctors do/do not know about LBD.

The first was my spine surgeon who had asked me about the purple rubber bracelet

that I wear. I told him it was for Lewy Body Dementia and he said he had heard

of dementia, but not of Lewy Body Dementia. I told him that I would bring him

information the next week at my appointment. When I brought the information

the next week, he told me that he thinks that his FIL has LBD...so he must have

looked it up before I came back. His FIL has been living nearby for the past 2

years and he sees him declining quickly and his Parkinsonism symptoms are also

now so much worse. So...I think that I probably have facilitated to get one

person the information and the medical care that his FIL will need.

I went to a Headache Neurologist, and i asked her if she had heard of LBD. She

said that she did and has a few patients with it, and she was so excited that

there was a support group here. I went to a vascular doctor who had no idea at

all, and my primary care doctor said that he knew and the hallmark of LBD is

people seeing little green men. I did correct him that those with LBD have

visual hallucinations but they are realistic and are not little green men.

I have to go to Balance Therapy because I have had vertigo on and off for over

two years. the gal that does all the assessment tests was talking to me and

somehow the subject came up...I think she was asking me what kind of work that I

do and I told her that I am permanently disabled but that I do the support

group. She was so excited also...it seems that on Thursdays they have a group

session for those with Parkinsonism and many have LBD. I brought her my support

group flyer and some of my business cards.

So...sometimes the people that you least expect to know about LBD are the ones

that do and vice versa.

Well...one of the tests that the neurologist has ordered was the EEG (checking

my brain waves)I had the brain MRI a few days prior and that was scary for me

because I was afraid that I had LBD. Then when I had the brain wave test, the

technician explained to me how they can tell from this test if a person has any

type of dementia because the space of the waves will be all different (I think

she called it disordered). I was a little afraid when I knew that because I

didn't know if I wanted to know that or not. (myu brain in OK except for a

little speck on the outside of my pituitary gland)

For me, it was something that I wouild have wanted to know so that I could make

sure that I get the proper medical care. But on the other hand, I wasn't so

sure that I was ready to hear if I did have LBD. I do worry about it some days,

but it is the same as us worrying about cancer when we go for colonoscopies or

mammograms. The key is diagnosis so that we can get the proper care.

This same technician was telling me how you differentiate if you have dementia.

Certain things like forgetting the name of someone you just met, losing your

keys, or forgetting to set the aarm clock, are all things that are perfectly

normal if you are over 40. Putting your keys in the refrigerator, forgetting

the name of your spouse or child, or not knowing how to set the alarm clock are

most likely signs of some dementia. We have to keep our minds active, let

family friends and neighbors know about LBD, and in my case, I ask them to let

me know if they think that I am having some dementia signs.

I have set up a new Yahoo Group for those in my support group...one that all

involved (person with LBD, family, friends, caregivers, etc.) may

participate...this disease does not just affect one person...it affects everyone

who interacts with them.

I pray that you will have the strength and courage to help your dad along this

journey.

Joan

> >

> > There is no known way to figure out how long anyone has.

> >

> > Usually it is 3-10 years " after " diagnosis. Mom was exactly 4 years after

her dementia diagnosis. Others do shorter or longer.

> >

> > Hugs,

> >

> > Donna R

> >

> > Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

> >

> >

> > How long, progression, expectations

> >

> > I wonder about the progression of LBD with parkinsonism. My dad has shown

symptoms for about 3-4 years but was just diagnosed in November 2010. He's had

three bad episodes with confusion/hallucinations within the last year but

" recovered " from them. I know there are no absolutes but is there anything I

can somewhat expect in the future? He is 83. He is not on any meds and I think

he really does better without them.

> >

> > Toni (daughter of , age 83)

> >

> >

> >

> >

> >

> >