Re: My mother's neurologist... and OT

July 6, 2007

That is wonderful, congrats!

While Mom and I were at our family reunion over the 4th, my cousin's husband

works with a Neurologist and he brought up LBD before I had a chance to tell him

that Mom was diagnosed with it. He is a God send! Now I have a source that

knows what they are talking about, even tho the Neurologist here states he

does(left her on Sinemet before I asked if it was contributing to her

hallucinations - then he said, well the dosage was so low, that IF she had

parkinson's it wasn't enough to do any good, so she might as well drop it).

Just can't believe it, all the money and putting it in her system for

nothing..... Anyway, now I can talk to and get the answers I need from FAMILY!

Yipee!!!

wrote:

PS Received a phone call last night from the neurologist who wants to

do his case report on my mom's journey. Will be emailing mom's

history this AM and he'll call again for follow-up questions. I think

my mom's story is very important to spread to other doctors - maybe

they won't make the same mistakes on others as they did with mom.

Maybe mom & I will save another family from heart ache.

>

> My mother's neurologist emailed me yesterday and there's another

> neurologist who is finishing up his residency and wants to write

his

> paper on my mother and another woman who had LBD and had the rapid

> decline like my mom. I agreed to participate (as long as my mother

> stays anonymous.)

>

> Who would have thought?

>

> My goal was to help just one family not have to go through what we

went

> through (which was the rapidity of the disease - in my opinion due

to

> Risperidone.) I think I've reached and went beyond that goal from

my

> continuing to be on this board, by my becoming a LBDA volunteer (as

a

> community awareness volunteer + support group facilitator + the Q & A

> session w/ Dr. Gomperts, etc.)

>

> NOW to have my mother's story told in a neurologist's paper...

Imagine

> all the medical persons who will be reading that paper? All those

in

> training to be neurologists? (Since mom's neurologist is also a

> professor at Harvard.) The word is getting out!

>

---------------------------------

Pinpoint customers who are looking for what you sell.

July 6, 2007

My daughter and I went to see Mom's internist today. He told us (from what I've

read I disagree) that there is no really way of knowing if she has Alzheimer's

or LBD short of a brain biopsy. The visit was a complete waste of time and

money. We have an appointment with the neurologist on the 17th.

I hope he'll be more help.

Gladys Stefany

VERY proud daughter of courageous LBD patient ...

Grace

-- Re: Re: My mother's neurologist... and OT

That is wonderful, congrats!

While Mom and I were at our family reunion over the 4th, my cousin's

husband works with a Neurologist and he brought up LBD before I had a chance to

tell him that Mom was diagnosed with it. He is a God send! Now I have a source

that knows what they are talking about, even tho the Neurologist here states he

does(left her on Sinemet before I asked if it was contributing to her

hallucinations - then he said, well the dosage was so low, that IF she had

parkinson's it wasn't enough to do any good, so she might as well drop it).

Just can't believe it, all the money and putting it in her system for

nothing..... Anyway, now I can talk to and get the answers I need from FAMILY!

Yipee!!!

July 6, 2007

What amazes me is that we who are living LBD can almost diagnose

other's loved ones just from our own experience.

Three different conversations I had last weekend led me to believe

someone whom I was talking with had a LO with LBD. I was out of the

country at a wedding, so these were absolute strangers.

In the dementia ward at the nursing home, my husband and I can

probably label the ALZ from the LBD with only a few clues.

If I were making a list, I would start with

falling

checkbook

lost while driving

body temperature off kilter

confabulations

hallucinations

losing words

Jekyll Hyde

fluctuating moods

Granted, we are not professionals, but at least we can mention to

those who care, have you researched Lewy Body?

I'd like to see the whole list of symptoms in their usual progression

as a checklist.

I'd like to be able to pinpoint on a continuum how far we are into

the thick of all that is to come.

I'd like a good book to pinpoint which behaviors are house in which

portions of the brain. I could proabably chart fairly accurately

where the most trouble is with Millie by the behaviors.

I know we are about 3 years into it, and we have had it fairly easy

thus far. It is the uncertainty, and the inability to plan for any

more than a few days.

School starts in 4 weeks, and I have to have a good plan in place.

Daycare seems impossible, and in-home care just seems scary becasue

there are no guarantees with Millie.

Now I suspect my husband is getting jealous of the time I spend with

his mother.

I can't have all my bases loaded all the time.

We think we could swing assisted living about 4 years with te current

assests, but what if she lives longer? I hate a good mystery!

I hate having to calculate based on how much longer Millie will last.

We will not do Nothing, but the somethings are getting harder and

harder to nail down.

Millie is still too strong to leave her with just anyone.

Anybody near Fort Myers, Florida going through this?

Carol

> My daughter and I went to see Mom's internist today. He told us

(from what I've read I disagree) that there is no really way of

knowing if she has Alzheimer's or LBD short of a brain biopsy. The

visit was a complete waste of time and money. We have an appointment

with the neurologist on the 17th.

> I hope he'll be more help.

>

> Gladys Stefany

>

> VERY proud daughter of courageous LBD patient ...

> Grace

> -- Re: Re: My mother's neurologist... and OT

>

> That is wonderful, congrats!

>

> While Mom and I were at our family reunion over the 4th, my cousin's

> husband works with a Neurologist and he brought up LBD before I had

a chance to tell him that Mom was diagnosed with it. He is a God

send! Now I have a source that knows what they are talking about,

even tho the Neurologist here states he does(left her on Sinemet

before I asked if it was contributing to her hallucinations - then he

said, well the dosage was so low, that IF she had parkinson's it

wasn't enough to do any good, so she might as well drop it). Just

can't believe it, all the money and putting it in her system for

> nothing..... Anyway, now I can talk to and get the answers I need

from FAMILY! Yipee!!!

>

> --

> I am daugher of Leonard, diagnosed May 2004, probably had lbd since

1993,.Dad had a serious fall in 7/05 causing him to hav hip

surgery .After that he developed aspiration pneumonia 7/05 with

pulmonary embolyis, which he almost died from. He had a 2nd bout of

aspiration pneumonia and uti 8/05. He died when his blood pressure

fluctuations started dropping without coming back up on 9/25/05,

> may he rest in peace with his mom and dad,

> a smile a day keeps the meanies away

>

July 6, 2007

Hi Carol,

I don't know if we have written each other before. I am Diane and

believe I have LBD, but I am only going on 40. But I have all the

symptoms.

I was just wondering what you meant with body temperature being off

kilter. You see I have had a fever off and on for over a year now

with no explanation. My white blood count has been up a bit .. but no

doctor has been tell me why. Is this common in LBD?

What does confabulations mean?

My Dad had AD .. and I know what I'm going through is definitely not

that.

I have written down everything from the start .. as I could never

remember it when I went to the doctors. So every time something new

happens, I add it to a page on my computer.

Diane

> > My daughter and I went to see Mom's internist today. He told us

> (from what I've read I disagree) that there is no really way of

> knowing if she has Alzheimer's or LBD short of a brain biopsy. The

> visit was a complete waste of time and money. We have an

appointment

> with the neurologist on the 17th.

> > I hope he'll be more help.

> >

> > Gladys Stefany

> >

> > VERY proud daughter of courageous LBD patient ...

> > Grace

> > -- Re: Re: My mother's neurologist... and OT

> >

> > That is wonderful, congrats!

> >

> > While Mom and I were at our family reunion over the 4th, my

cousin's

> > husband works with a Neurologist and he brought up LBD before I

had

> a chance to tell him that Mom was diagnosed with it. He is a God

> send! Now I have a source that knows what they are talking about,

> even tho the Neurologist here states he does(left her on Sinemet

> before I asked if it was contributing to her hallucinations - then

he

> said, well the dosage was so low, that IF she had parkinson's it

> wasn't enough to do any good, so she might as well drop it). Just

> can't believe it, all the money and putting it in her system for

> > nothing..... Anyway, now I can talk to and get the answers I

need

> from FAMILY! Yipee!!!

> >

> > --

> > I am daugher of Leonard, diagnosed May 2004, probably had lbd

since

> 1993,.Dad had a serious fall in 7/05 causing him to hav hip

> surgery .After that he developed aspiration pneumonia 7/05 with

> pulmonary embolyis, which he almost died from. He had a 2nd bout

of

> aspiration pneumonia and uti 8/05. He died when his blood pressure

> fluctuations started dropping without coming back up on 9/25/05,

> > may he rest in peace with his mom and dad,

> > a smile a day keeps the meanies away

> >

>

July 7, 2007

Oh, wow! Your list is what happened to Mom down to the " t " . The checkbook and

calendar were the first to go. Then, the getting lost while driving.

Oh, I wish I had been able to see what was coming. Each isolated incident

didn't pull all together in my mind until she was already pretty far gone.

I remember my first real clue was when we went to a neuro in NYC and she asked

Mom to draw a circle and then the numbers on the clock face. She couldn't do

it. She kept putting all the numbers crunched up in the same spot. I was so

horrified. I had no idea that the worst was yet to come.

Gladys

-- Re: My mother's neurologist... and OT

What amazes me is that we who are living LBD can almost diagnose

other's loved ones just from our own experience.

Three different conversations I had last weekend led me to believe

someone whom I was talking with had a LO with LBD. I was out of the

country at a wedding, so these were absolute strangers.

In the dementia ward at the nursing home, my husband and I can

probably label the ALZ from the LBD with only a few clues.

If I were making a list, I would start with

falling

checkbook

lost while driving

body temperature off kilter

confabulations

hallucinations

losing words

Jekyll Hyde

fluctuating moods

Granted, we are not professionals, but at least we can mention to

those who care, have you researched Lewy Body?

I'd like to see the whole list of symptoms in their usual progression

as a checklist.

I'd like to be able to pinpoint on a continuum how far we are into

the thick of all that is to come.

I'd like a good book to pinpoint which behaviors are house in which

portions of the brain. I could proabably chart fairly accurately

where the most trouble is with Millie by the behaviors.

I know we are about 3 years into it, and we have had it fairly easy

thus far. It is the uncertainty, and the inability to plan for any

more than a few days.

School starts in 4 weeks, and I have to have a good plan in place.

Daycare seems impossible, and in-home care just seems scary becasue

there are no guarantees with Millie.

Now I suspect my husband is getting jealous of the time I spend with

his mother.

I can't have all my bases loaded all the time.

We think we could swing assisted living about 4 years with te current

assests, but what if she lives longer? I hate a good mystery!

I hate having to calculate based on how much longer Millie will last.

We will not do Nothing, but the somethings are getting harder and

harder to nail down.

Millie is still too strong to leave her with just anyone.

Anybody near Fort Myers, Florida going through this?

Carol

July 7, 2007

<snip> I remember my first real clue was when we went to a neuro in NYC

and she asked Mom to draw a circle and then the numbers on the clock

face. She couldn't do it. She kept putting all the numbers crunched

up in the same spot. I was so horrified. I had no idea that the worst

was yet to come. <snip>

http://jnnp.bmj.com/cgi/content/abstract/62/3/243

http://www.ncbi.nlm.nih.gov/sites/entrez

http://jnnp.bmj.com/cgi/content/abstract/70/4/483

July 7, 2007

-

You are AMAZING!!!! How did you know right where to find that with all of

the articles out there!

Gladys

July 7, 2007

<snip>

http://www.ncbi.nlm.nih.gov/sites/entrez

<snip>

2nd link didn't work - here: http://tinyurl.com/ywkobz

July 7, 2007

Thanks! I thought perhaps I needed to enroll or something.

Gladys

July 7, 2007

Lewy Buddies,

I left something off my list.

Millie was unable to handle her own meds.

My husband used to take them over every day before I started spending

nights with her.

If she was left to her own devices, she couldn't handle a box marked

out for the week.

She got very time confused and she lost track of medications.

She couldn't remember the day of the week, or whether she had taken

her pills, or not.

Millie took up with my small Chihuahua and it was her constant

companion.

Chia has had a bad rib since I got her as a puppy and if you pick her

up wrong, she will bite.

Chia loved the warm bed, with the electric blanket on high, and she

also enjoyed the length of the pillow, as well.

The morning that Millie snapped she seemed to fall back into a time

as a child and she knew her mother didn't allow animals in the

house.

All of the sudden she was upset that bastard dog was in her house,

and she thought we were trying to conspire against her to get her

house.

She picked up an antique wooden level, about the size of a 2x4 and

went after the dogs, my car, and me.

She had the most strange look on her face as she tried to damage

whatever she could.

The dogs had no reason to distrust her, so they wouldn't have run

from her if we had not shooed them into our house and locked them

away.

Of course, Millie doesn't remember any of this, but I do not want

this lady living in my house.

I will stay at her house, after I weapon-proof the house, but I just

can't see her on tile floors with our other five dogs underfoot.

Of course this is now becoming an issue with my husband. His mom

makes him crazy, and she'd drive him crazy and me, too, trying to

keep them out of each other's wind.

None of this is over until the fat lady sings, and I am the fat lady,

so I will get my way, or an assisted living facility will have to be

found. Either Millie, my husband, or I will get to be assisted. At

this rate, I may be the one to go.

Millie is mentally way down, but physically in pretty good shape. I

guess that is why I can still be a bit flip about all of this. We

have not hit incontinence yet, and clumsy conversation is about the

worst in a day, besides the repetitions of the same thing, over and

over. I know repetition and over and over mean the same thing, but

with a LBD LO, you can't say one without the other.

When Millie is in a time warp, or time-confused, we have to figure

out how old she is and what is going on inside her internal

timeline. She knows her father doesn't like her to oversleep, so

sometimes she worries he might find her in bed way into the morning.

At the nursing home Millie does not take many naps, and is up for

every meal. She's gaining weight, socializing, and getting physical

and occupational therapy. If she comes home, I am afraid we will

slip backwards quickly.

When I am at the nursing home I chat with her table of residents in

the dining room. We kid about who was out dancing last night, and

which ones had dates. They seem to like being treated as regular

gals, and we laugh a lot.

Things can get pretty petty at the home also. If somebody doesn't

let Millie join in, or slights her, she is ready to hit them all. I

suppose the nursing home is used to this, but I don't know how to

handle it. I try to reason, and explain that everybody in the place

would rather be somewhere else, and that everybody will probably act

badly from time to time. I don't really think she buys any of that.

Where's Super Granny Nanny when you need her?

Millie is particularly jealous of one resident who acts like the

table counselor. This lady helps set the tables, and clears and

wipes down the tables. I am sure that Millie thinks she does it to

be the nurse's pet. I hope Millie will find a niche where she feels

useful somehow while she is there. I can't say I especially enjoy

the nursing home gossip Millie likes to share.

I guess the good news is, they forget and don't even have to forgive.

I hated all the cliques in junior high and high school, and even in

the workplace. I am very saddened to see it alive and well among

ladies in their 80's and 90's.

I want to make a close enough connection with someone at the NH who

will honesty tell me what they see down the road for Millie. They

are the experts, but I have to find one I might be able to take to

lunch that will be perfectly candid. I know I am not objective, and

I know the lpn's and cna's can chart things out with more accuracy

than I can.

Have you noticed that most support groups for caregivers meet during

the workday? I would attend a support group at the nursing home if

they offered such a thing. I don't want the salesperson, or

administrator, to manage a group, but rather someone from the

dementia wing. I don't need to ask Millie specific questions, but I

run into visitors fairly often, and wouldn't it be nice to get to

know those folks out of earshot of Millie. It seems we are all very

polite to each other, but it would be nice to be supporters of each

other. I wish reading these posts were required reading for the

staff at the nursing homes.

When my father spent 3 weeks in ICU after his stroke, I thought

interns should have to live like families for a week, or so, as part

of their training. Five different families lost loved ones in my

three weeks. We all knew each other's stories and could talk

ventilators, feeding tubes, PIC lines, maybe today, and doesn't look

good, with each other.

That experience was " Chutes and Ladders " . While one family had a

ladder day, another may have fallen down a major chute. Sometimes

all we told each other was whether it was a Chute Day, or Ladder Day,

as we sat in the ICU waiting room.

People at work have no real idea what we go through. It is hard for

them to be sympathetic because they have no clue what any one hour

might do the caregivers sanity.

I can see why employers get grumpy about job performance of

caregivers. Shoot, we were probably the office caregivers all along,

and now we aren't able to do so much in the compassion and empathy

department. It's hard for us to ask for what we are so generous with

under normal circumstances. Sometimes, just a " poor baby, poor baby "

is all I need.

So, I will try to remember the little things, hoping it will help

others.

The clock test, Millie numbered the clock completely backwards. Only

the 12 and 6 were in the right spots. Penny, apple, table were

answers to a short term memory question on our mental test. Another

one was green, horse, and cigar. I think I will have those tattooed

on my instep in case I succumb to AD or LBD.

One should always know the day of the week and the name of the

president. Underwear with the days of the week and the president of

the United States might be a hot seller. My luck they would ask me

the president and I would say, Fruit of the Loom. Day of the week,

size 8.

Hope somebody smiled!

Carol

>

> Oh, wow! Your list is what happened to Mom down to the " t " . The

checkbook and calendar were the first to go. Then, the getting lost

while driving.

> Oh, I wish I had been able to see what was coming. Each isolated

incident didn't pull all together in my mind until she was already

pretty far gone.

>

> I remember my first real clue was when we went to a neuro in NYC

and she asked Mom to draw a circle and then the numbers on the clock

face. She couldn't do it. She kept putting all the numbers crunched

up in the same spot. I was so horrified. I had no idea that the

worst was yet to come.

>

> Gladys

>

> -- Re: My mother's neurologist... and OT

>

> What amazes me is that we who are living LBD can almost diagnose

> other's loved ones just from our own experience.

>

> Three different conversations I had last weekend led me to believe

> someone whom I was talking with had a LO with LBD. I was out of the

> country at a wedding, so these were absolute strangers.

>

> In the dementia ward at the nursing home, my husband and I can

> probably label the ALZ from the LBD with only a few clues.

>

> If I were making a list, I would start with

>

> falling

> checkbook

> lost while driving

> body temperature off kilter

> confabulations

> hallucinations

> losing words

> Jekyll Hyde

> fluctuating moods

>

> Granted, we are not professionals, but at least we can mention to

> those who care, have you researched Lewy Body?

>

> I'd like to see the whole list of symptoms in their usual

progression

> as a checklist.

>

> I'd like to be able to pinpoint on a continuum how far we are into

> the thick of all that is to come.

>

> I'd like a good book to pinpoint which behaviors are house in which

> portions of the brain. I could proabably chart fairly accurately

> where the most trouble is with Millie by the behaviors.

>

> I know we are about 3 years into it, and we have had it fairly easy

> thus far. It is the uncertainty, and the inability to plan for any

> more than a few days.

>

> School starts in 4 weeks, and I have to have a good plan in place.

>

> Daycare seems impossible, and in-home care just seems scary becasue

> there are no guarantees with Millie.

>

> Now I suspect my husband is getting jealous of the time I spend with

> his mother.

>

> I can't have all my bases loaded all the time.

>

> We think we could swing assisted living about 4 years with te

current

> assests, but what if she lives longer? I hate a good mystery!

>

> I hate having to calculate based on how much longer Millie will

last.

>

> We will not do Nothing, but the somethings are getting harder and

> harder to nail down.

>

> Millie is still too strong to leave her with just anyone.

>

> Anybody near Fort Myers, Florida going through this?

>

> Carol

>

July 8, 2007

Gladys,

I had a friend who's Dad had dementia, I asked her if she thought it might be

LBD and she said no they told her it was AD. Well, she called me a few months

later and said they had been to a new MD that thought her Dad had LBD. When she

asked how I knew, (I hadn't seen her Dad) I said, " You can usually tell by how

crazy the cg feels. " We had a good laugh about that one.

I was so aware that while it is hard to take care of AD LOs, they just don't

have the same situation that LBD LOs have.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: My mother's neurologist... and OT