Parkinson w/Lewy Body Disorder

[Guest guest]

I just got the results of 's tests that were taken over the

last several weeks. Along with his PD he has now been diagnosed with

difussed lewy body dementia. His protien level (From Spinal Tap)is

consistance with that of an alzhiemers/lewy body. I'm asuming that

it's going to be down hill from here on in. The Neuro is setting up

an appointment at Columbia Pryes.(NYC) with a specialist, because of

's rapid decline, (in the last 3/4 months he scored 4 out of 30

of the memory(dementia) testing) He basically ruled out that his

dementia was being caused by any of his medication(over that last few

months he has been on/off the ones that could caused them, and the

dementia continued) The results of his P.E.T. Scan @ North Shore seem

to conclude that his dementia is lewy body. I don't know what else

they can find wrong with him. He's only 56(i'm a very OLD 46)

If anyone else has experienced, or (any of the combative/violent

behavior that seems to go hand in hand ) has any info that I could

bring up to the doctor it would be so greatly appreciated. I'm

basically alone with this, really doesn't know whats going on,

and family and friends (so few left) seem not to want to know. What

am I to expect with this added disease. Any of the web sites don't

tell me much.

Jo Ann (Long Island, NY)

[Guest guest]

jo ann

welcome to the best support place for lbd caregivers there is. and there is

also a spouse support group that helps alot of people too. my hubby and i take

care of my dad who was diagosed with lbd may and is in a very fast decline. if

my fther werre to move to staten island to be with his sister i would want

him to go to prebys. hosp it is one of the best in the country. but we live in

pensacola florida, if i had my way we owuld move back to nashville, tn where

we could get daddy in to vanderbilt university medical center. there are

quite a few in this group that iwll give you more of what ot expect than i,

since

we are recently dignosed. so i will back off for them on comments. but i will

say it is very nice to meet you and i am sorry that you had to join our group

becuase that means you are in for a rough time ahead, but know that this is

the place to vent, ask questions,c ry, scream get angry, and share all your

stories, for no one hear judges you by anything other than the love you givefor

beina a caregiver to your loved one.

sharon m

a smile a day keeps the meanies away!!!

[Guest guest]

Hello Jo Ann,

You described so much in your short note, including that you are

feeling alone in dealing with your husband's illness. Unfortunately

that is often the case, where one person becomes the caregiver and

other family and friends pull back. I am sorry that you have been

dealing with LBD alone and wish that you had more local support, but

please know that you have a family here, with caring people, who share

all aspects of LBD caregiving and of life. At your age I was

caregiving for my mother, but I believe that caring for such a young

spouse would have been more difficult. For additional support you

might want to consider joining the online Caringspouse group for LBD.

Unfortunately, yes, as you said, it is all down hill with LBD. You

mentioned that 's decline has been rapid and I noticed his low

score on the dementia test. What are his symptoms, and how long has

he had LBD? I'm sure they have already ruled this out, but there is

another dementia called CJD that is quite rapid. In LBD there can be

sudden drops and then plateaus, but the average time span is typically

5 to 7 years after diagnosis (although it has been reported to be

anywhere from 2 to 20 years) .

What are 's symptoms? You mentioned one, the combative/violent

behavior. Is he currently on any medication? Aricept was very

helpful for my mother in reducing the anger and hallucinations, and

increasing her cognitive abilities. One of the most comprehensive

articles I have read recently on LBD is listed on the LBDA website

(www.lewybodydementia.org); the first item on the " Links to other

sites " page, the article is titled " Dementia with Lewy bodies -

diagnosis and treatment " . One plus in 's favor, it sounds like he

has a very good doctor that has performed many tests, but is still

willing to refer him on to another expert for further analysis.

Take care,

Peggy

> I just got the results of 's tests that were taken over the

> last several weeks. Along with his PD he has now been diagnosed with

> difussed lewy body dementia. His protien level (From Spinal Tap)is

> consistance with that of an alzhiemers/lewy body. I'm asuming that

> it's going to be down hill from here on in. The Neuro is setting up

> an appointment at Columbia Pryes.(NYC) with a specialist, because of

> 's rapid decline, (in the last 3/4 months he scored 4 out of 30

> of the memory(dementia) testing) He basically ruled out that his

> dementia was being caused by any of his medication(over that last

few

> months he has been on/off the ones that could caused them, and the

> dementia continued) The results of his P.E.T. Scan @ North Shore

seem

> to conclude that his dementia is lewy body. I don't know what else

> they can find wrong with him. He's only 56(i'm a very OLD 46)

> If anyone else has experienced, or (any of the combative/violent

> behavior that seems to go hand in hand ) has any info that I could

> bring up to the doctor it would be so greatly appreciated. I'm

> basically alone with this, really doesn't know whats going on,

> and family and friends (so few left) seem not to want to know. What

> am I to expect with this added disease. Any of the web sites don't

> tell me much.

>

> Jo Ann (Long Island, NY)

[Guest guest]

Jo Ann, in NY

I am not sure if you have had responses or not but I have not seen you

back in here I don't think.

At the bottom of Courages messages is the address of the info for the

LBD site and it has lots of info.

It is hard to say what you can expect no matter where you are at.

Everyone is so different. The disease just progresses in steps and what

produces the next step and how long anyone is on it is debateable. And

no one seems to know how many steps there are either. Some of the board

people are meeting with the research people and we may have some news on

this soon.

Hope things are going as well as can be expected.

Donna R

(Mom died Oct '02)