Re: I'M NEW TO THIS GROUP

November 15, 2005

My name is Donna P. My father is the loved one with LBD. He was

also fine until he had a mild heart attack in Dec. of 2002. He was

put under anesthesia for an angioplasy and a few stents to be placed

to repair blockages. Following this, my dad was never the same. It

took 8 or 9 months for us to get a diagnosis but LBD was the

diagnosis we got. My dad's mind is relatively good too. In the

beginning we had some very strange behavior and some hallucinations

but after we got the diagnosis and the proper medications, he is

doing remarkably well mentally. He doesn't usually bring things up

as far as memory recall but when we bring things up, he will talk

about it like he remembers details. Kind of like his memory recall

isn't good but once you jog his memory, he can remember. Sometimes

he even still brings things up on his own. My son was in on Sunday

to see him. When I went in on Monday he said, " Josh told me he got

a new truck. I am afraid he is going to get in over his head and

not be able to afford it. " I was kind of surprised because

everything he said was right on, my son did get a new truck and I

was worried about the same thing! So, my dad is very aware of his

surroundings and what is going on. Sometimes it doesn't appear that

way though. My dad also had the sleep disturbances. He has RBD

(Rem Sleep Behavior Disorder). He also has the Parkinson features,

so much so that his neuropsychiatrist feels that he probably also

has Parkinsons Disease. My dad has declined so much physically that

we had to place him in a nursing home this year in May. He did well

with us at home up until then. He was getting to the point we were

having too much trouble transfering him. We were afraid of hurting

him or ourselves. So, my answer is yes, some of our loved ones are

aware right up to the end. I am sure others will share their

stories. That is one of the things with LBD, the fluctuations in

cognition, is it a curse or a blessing? I so much enjoy my dad

knowing me and still enjoying so much in his life BUT, he is so very

aware of his condition and often seems depressed about being in that

state. Sometimes I wonder what he is thinking and would he be

better off if he wasn't so aware. It is those times that I feel so

sad. Anyways welcome to the group. You have found the right

place for comfort, support and a whole lot of knowledge. (Way more

than you will find any where else!)

Donna P.

November 16, 2005

Hi

Your mother sounds very together cognitively. I'm sorry to read about

all of her physical problems. When her doctor told you/her that she had

LBD did he/she explain why they came up with this diagnosis? Wondering

out loud here.

Courage

jean daquila wrote:

> My mom was diagnosed three years ago with LBD.

November 17, 2005

jean,

i am sorry you had to search us out, but welcome to our famly, please feel

free here to ask questions, rant, rave, scream, cry, share stories, whatever

it takes to help you. we are here for you and we understand.

the big clue that seems to suggest your mom has lbd is the rapid decline

post surgery. lbd patients as a whole seem to react extremely bad to

surgical aneshtesia. my dad did that post hip surgery, he had a lung blood

clot as well as aspiration pneymonia twice and a uti once, he died after

that on 9/25/05, he was origainly diagnosded in 5/=4 but has had it since

1993 that i am aware of.

what type of medicines is your mom on. there are some really taboo

medicines for lbd p[atients., like haldol and ativan.

exelon is an excellent medication, it helped dad for one year and then we

addednamenda. but dad develped orthostaic bp and had to stop the meds.

take care hon, and goood luck hugs sharon m

-- I'M NEW TO THIS GROUP

a

My mom was diagnosed three years ago with LBD. It started out with some

incontinence, then sleep apnea and sleep disorder -- she had a sleep study

done; then COPD, and pain and numbness on her left side. The incontinence

got worse until we (my sister, brother and I)decided along with her doctor

and herself that she should have a bladder lift and hysterectomy. After

that surgery she was never the same. It didn't cure the urinary

incontinence and she just got weaker and weaker.

She is now in a nursing home. She has a trach because of aspiration

pneumonia and she has a feeding tube. She constantly gets infections so is

on antibiotics most of the time. She has a horrible bed sore which is

getting better but still gives me the willies to see. This is because she

can't move on her own; can't stand or walk obviously and even her arms are

very, very weak. With the trach she has a speaking valve so she can

communicate to us and her mind is still surprisingly very good. Her

short-term memory isn't very good, but remembers things when reminded. She

still knows all about her personal finances and all about her care at the

nursing home. Also, she wears a diaper and has a bag for the urine. This

is a woman who was very independent and very healthy all her life until

suddenly this came on.

She rarely has hallucinations and they are minor. I'm just wondering is

this really Lewy Body? She has the PD symptoms, too, tremors, etc. But

everything I read about LBD says hallucinations are the major concern. And

she doesn't have dementia (yet). I mean, she's so keenly aware of her

situation, it's almost worse than if she were demented and didn't know what

was going on. Her body is destroyed, but her mind is still there. My

sister and brother live in the same town in WV and I live in CT. Mom is in

a nursing home across the river in Ohio so they see her a lot. My sister

goes to see her every day and is very knowledgeable about her care and the

doctors, etc. I visit frequently and see mom every day that I'm there. She

enjoys the company of her loved ones. Everyone keeps telling us (doctors

and nurses, etc.) that our love to her and caring is invaluable.

Does anybody else have a loved one with LBD who is like my mom?

Thanks, D'Aquila in CT

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November 17, 2005

She went to a neurologist for a sleep study. She was then diagnosed with sleep

apnea and some kind of sleep behavior disorder. The CPAP (the mask for sleep

apnea and that machine) seemed to help for a while. But then she started

getting this stiffness on one side. At first we thought stroke but that was

ruled out. Further investigation ruled out Alzheimer's and Parkinson's but she

did have th Parkinson's symptpoms with the stiffness and some tremoring in her

hand on that side. I'm not really sure how he came up with the Lewy body

diagnosis other than by differential diagnosis if you know what I mean.

Nevertheless, at this time she is a helpless invalid in a nursing home! It's so

frustrating for us and you can only try to imagine how frustrating it is for

her. We live in a smaller (not a tiny hick town) in WV, sburg. So we

took her to Cleveland Clinic where she had further studies and sorta agreed on

the Lewy body. But you know how it is. It's such a vague thing.

We thought it was a rare disease until we started studying it more and found

out it's really not rare at all. I probably didn't answer your question, but my

sister and I believe the diagnosis is correct. We just wish we could make her

more comfortable. She can't turn in bed or sit up or anything.

Please write back to me with your thoughts. How was your LO diagnosed?

Jean.

gaat wrote:

Hi

Your mother sounds very together cognitively. I'm sorry to read about

all of her physical problems. When her doctor told you/her that she had

LBD did he/she explain why they came up with this diagnosis? Wondering

out loud here.

Courage

jean daquila wrote:

> My mom was diagnosed three years ago with LBD.

Welcome to LBDcaregivers.

November 17, 2005

I read about your dad and his post surgery experience. Like I said, Mom went

down hill rapidly from then. She is on so many medications I don't know where

to begin. One of them is Ativan. That's for pain or is it the one for

nervousness? She's on pain meds: She has been on different ones. Nothing

helps very well but when they give her the Ativan she settles down and relaxes,

but it does make her sleepy. I think. It's confusing because she does take so

many. She has COPD so has a breathing treatment twice a day. She's on I think

it's called Mirapex for the tremors. I will get the list from my sister and

give you more info. This site is really wonderful and I'm so glad I found it.

I neighbor of my sister's found the web site on her own and told us about it!

By the way, this neighbor writes for magazines and wants to do an article on mom

and us about what we're going through. She wants to submit it to Women's Day

magazine. What do you think about that idea? Jean

Sharon wrote: jean,