Re: EXELON Has anyone seen great improvement with?

[Guest guest]

carol.incognito wrote:

>I was wondering if anyone has seen a lot of improvement with Exelon?

>

My mother is on Exelon, too, as well as Seroquel. Those are the only

medications she is taking for her Lewy Body, and the Seroquel is bing

wonderful for reducing her hallucinations, anxiety and paranoia, and the

Exelon has been amazing in increasing her word-finding ability as well

as her memory and recall. She, too, started at 1.5 and has been

increased to 3.0 dose. There were some problems with stomach upset

initially at the higher dose but those have resolved..

Mom is 80 and started having dementia symptoms approximately four to

five years ago (identifiable as such), officially diagnosed with LBD

2-1/2 years ago.

jacqui (in Puget Sound)

PS - I've been away since mid August due to unexpected hospitalization

with flesh eating disease. I ended up airlifted in septic shock to our

local trauma center and am lucky to be here - but now I'm back.

[Guest guest]

Hi All .... Yes we've had very good luck with Exelon,

when my husband was dx he started them 1.5 April

2004 and been on the same mg 1.5 for going on 3 years

and hes doing real well , hope that helps, ..... Eileen

Ontario , Canada

-- EXELON Has anyone seen great improvement with?

Hi everyone,

I was wondering if anyone has seen a lot of improvement with Exelon?

I started my Mom out on 1.5 mgs. about 3 1/2 weeks ago and then

increased to 3.0 mgs. last week. Don't get me wrong, there are still

problems, but nothing like they were. She is doing remarkably

different on it. I see a huge change and I was almost not going to

try again. The first time we tried it at the 3.0 and the doctor told

her that she was giving her something to help with her memory, my Mom

had all kinds of side effects; so, thinking it was from the RX I

stopped it. But, then we tried again and didn't tell Mom and I

started her off at the 1.5 dose first. I am on cloud 9 with the

change. I know there are no " fixer " drugs out there but I am very

pleased with the change. This is the only med she is on other than

heart, diabetes, a statin, vitamins...well that's enough pills. :-(

Point is, no other drugs for LBD.

Just curious if anyone else has had any luck with this?

My Mom is almost 79 and just DX with Dementia with Lewy Bodies...she

has been sick for 6+ years, referred to as vascular dementia before

the new DX....this all happened after Dad died... for anyone that

doesn't know my story...

Carol Incognito :-)

[Guest guest]

jacqui,

my dad was on exellon for one year and i believe it really slowed down the

progression of the disease. he didnt lose ground as fast as he did before he

was on exelon. dad used it for about 1 year hugs, sharon

---- jacqui wrote:

carol.incognito wrote:

>I was wondering if anyone has seen a lot of improvement with Exelon?

>

My mother is on Exelon, too, as well as Seroquel. Those are the only

medications she is taking for her Lewy Body, and the Seroquel is bing

wonderful for reducing her hallucinations, anxiety and paranoia, and the

Exelon has been amazing in increasing her word-finding ability as well

as her memory and recall. She, too, started at 1.5 and has been

increased to 3.0 dose. There were some problems with stomach upset

initially at the higher dose but those have resolved..

Mom is 80 and started having dementia symptoms approximately four to

five years ago (identifiable as such), officially diagnosed with LBD

2-1/2 years ago.

jacqui (in Puget Sound)

PS - I've been away since mid August due to unexpected hospitalization

with flesh eating disease. I ended up airlifted in septic shock to our

local trauma center and am lucky to be here - but now I'm back.

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

i wanted to add something tho, our neurologist changed the exelon, every 3 weeks

and slowly, he took one capsule a day 1.5 for 3 weeksn then took 2 capsules a

day, then went to 3 mg once a day with 1.5 at nite, and then 4 weeks later both

doses were 3mg, he stayed there about 4 weeks, then went to 6mg once a day 3

mgs onc e a day, then changed to 6mg twice a day, then 12 mg once a day hten

twice a day, where he stayed for 6 months or so before we tried adding namenda

but dad had developed severe orthosatic bp changes taht we had to stop the

dementia medicnes. goodluck and hugs, sharon m

---- " carol.incognito " wrote:

Hi everyone,

I was wondering if anyone has seen a lot of improvement with Exelon?

I started my Mom out on 1.5 mgs. about 3 1/2 weeks ago and then

increased to 3.0 mgs. last week. Don't get me wrong, there are still

problems, but nothing like they were. She is doing remarkably

different on it. I see a huge change and I was almost not going to

try again. The first time we tried it at the 3.0 and the doctor told

her that she was giving her something to help with her memory, my Mom

had all kinds of side effects; so, thinking it was from the RX I

stopped it. But, then we tried again and didn't tell Mom and I

started her off at the 1.5 dose first. I am on cloud 9 with the

change. I know there are no " fixer " drugs out there but I am very

pleased with the change. This is the only med she is on other than

heart, diabetes, a statin, vitamins...well that's enough pills. :-(

Point is, no other drugs for LBD.

Just curious if anyone else has had any luck with this?

My Mom is almost 79 and just DX with Dementia with Lewy Bodies...she

has been sick for 6+ years, referred to as vascular dementia before

the new DX....this all happened after Dad died... for anyone that

doesn't know my story...

Carol Incognito :-)

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

Yes, definite improvement when Exelon was started.

My dad was unable to speak for quite some time

and after Exelon was started he started talking,

slowly, but talking just the same, about what had

happened 6-8 months prior. He was more clear,

he followed instructions and was involved in his

daily living once again. Unfortunately dad had been

taking Ativan for quite some time before I realized

it could be so harmful to him. So, the Exelon did

give such a wonderful gift of having my dad back

yet the damage had already been done. He

continued to progress in the disease at a very

rapid rate.

Sandie

Des Moines, IA

dad, Merle, passed from LBD 9-20-02, age 65

-- EXELON Has anyone seen great improvement with?

Hi everyone,

I was wondering if anyone has seen a lot of improvement with Exelon?

I started my Mom out on 1.5 mgs. about 3 1/2 weeks ago and then

increased to 3.0 mgs. last week. Don't get me wrong, there are still

problems, but nothing like they were. She is doing remarkably

different on it. I see a huge change and I was almost not going to

try again. The first time we tried it at the 3.0 and the doctor told

her that she was giving her something to help with her memory, my Mom

had all kinds of side effects; so, thinking it was from the RX I

stopped it. But, then we tried again and didn't tell Mom and I

started her off at the 1.5 dose first. I am on cloud 9 with the

change. I know there are no " fixer " drugs out there but I am very

pleased with the change. This is the only med she is on other than

heart, diabetes, a statin, vitamins...well that's enough pills. :-(

Point is, no other drugs for LBD.

Just curious if anyone else has had any luck with this?

My Mom is almost 79 and just DX with Dementia with Lewy Bodies...she

has been sick for 6+ years, referred to as vascular dementia before

the new DX....this all happened after Dad died... for anyone that

doesn't know my story...

Carol Incognito :-)

Welcome to LBDcaregivers.

[Guest guest]

Hi Everyone and a special thanks to those that responded to my

question about Exelon with my Mom. That gives me a lot of hope. It

is wonderful news. I am glad that some of you experienced the same

thing I have of having a little bit of Mom back for awhile.

Jacqui, I didn't know you because I am new to the group, but my

prayers are with you and please take care of yourself. I know how

easy it is to neglect ourselves in the midst of trying to take care

of our LO's. I do the same thing. You have been through the

mill...my gosh...

The ice cream sundae was delicious...

And this group is just wonderful and want to thank everyone...I feel

like I have a new family, an extended family.

My best...

Carol Incognito

>

> Yes, definite improvement when Exelon was started.

> My dad was unable to speak for quite some time

> and after Exelon was started he started talking,

> slowly, but talking just the same, about what had

> happened 6-8 months prior. He was more clear,

> he followed instructions and was involved in his

> daily living once again. Unfortunately dad had been

> taking Ativan for quite some time before I realized

> it could be so harmful to him. So, the Exelon did

> give such a wonderful gift of having my dad back

> yet the damage had already been done. He

> continued to progress in the disease at a very

> rapid rate.

>

> Sandie

> Des Moines, IA

> dad, Merle, passed from LBD 9-20-02, age 65

>

> -- EXELON Has anyone seen great improvement

with?

>

> Hi everyone,

> I was wondering if anyone has seen a lot of improvement with Exelon?

> I started my Mom out on 1.5 mgs. about 3 1/2 weeks ago and then

> increased to 3.0 mgs. last week. Don't get me wrong, there are

still

> problems, but nothing like they were. She is doing remarkably

> different on it. I see a huge change and I was almost not going to

> try again. The first time we tried it at the 3.0 and the doctor

told

> her that she was giving her something to help with her memory, my

Mom

> had all kinds of side effects; so, thinking it was from the RX I

> stopped it. But, then we tried again and didn't tell Mom and I

> started her off at the 1.5 dose first. I am on cloud 9 with the

> change. I know there are no " fixer " drugs out there but I am very

> pleased with the change. This is the only med she is on other than

> heart, diabetes, a statin, vitamins...well that's enough pills. :-(

> Point is, no other drugs for LBD.

> Just curious if anyone else has had any luck with this?

>

> My Mom is almost 79 and just DX with Dementia with Lewy Bodies...she

> has been sick for 6+ years, referred to as vascular dementia before

> the new DX....this all happened after Dad died... for anyone that

> doesn't know my story...

>

> Carol Incognito :-)

>

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

My mom is not on EXELON, she is on Razadyne (formerly Reminyl). They started

her on that about 3 years ago, and she did very well until around July of this

year when she started to go down hill fast. In August they also put her on

NAMENDA, and what a change! She still takes the maximum dosage of Razadyne

along with the NAMENDA. It's like having my mother back again, (almost) not

this lady that stayed angry with me ALL THE TIME! Don't know how long it will

last, but I'm lovin' it!

My mom also has severe orthostatic hypotension, hospitalized for a week with

it back in April of 06. They gave her Floudrocortisone for it, but did not take

her off the Razadyne. I wonder why they took Sharon's dad off the Exelon?

LadySmilingAtU2@... wrote:

i wanted to add something tho, our neurologist changed the exelon,

every 3 weeks and slowly, he took one capsule a day 1.5 for 3 weeksn then took 2

capsules a day, then went to 3 mg once a day with 1.5 at nite, and then 4 weeks

later both doses were 3mg, he stayed there about 4 weeks, then went to 6mg once

a day 3 mgs onc e a day, then changed to 6mg twice a day, then 12 mg once a day

hten twice a day, where he stayed for 6 months or so before we tried adding

namenda but dad had developed severe orthosatic bp changes taht we had to stop

the dementia medicnes. goodluck and hugs, sharon m

---- " carol.incognito " wrote:

Hi everyone,

I was wondering if anyone has seen a lot of improvement with Exelon?

I started my Mom out on 1.5 mgs. about 3 1/2 weeks ago and then

increased to 3.0 mgs. last week. Don't get me wrong, there are still

problems, but nothing like they were. She is doing remarkably

different on it. I see a huge change and I was almost not going to

try again. The first time we tried it at the 3.0 and the doctor told

her that she was giving her something to help with her memory, my Mom

had all kinds of side effects; so, thinking it was from the RX I

stopped it. But, then we tried again and didn't tell Mom and I

started her off at the 1.5 dose first. I am on cloud 9 with the

change. I know there are no " fixer " drugs out there but I am very

pleased with the change. This is the only med she is on other than

heart, diabetes, a statin, vitamins...well that's enough pills. :-(

Point is, no other drugs for LBD.

Just curious if anyone else has had any luck with this?

My Mom is almost 79 and just DX with Dementia with Lewy Bodies...she

has been sick for 6+ years, referred to as vascular dementia before

the new DX....this all happened after Dad died... for anyone that

doesn't know my story...

Carol Incognito :-)

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

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

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small

Business.

[Guest guest]

Yes, my mom began her " NARANJA! " moments after starting the Exelon --

going by the suggested dosage for those w/ LBD (For Exelon

(rivastigmine), it shows the starting dose as 1.5 mg, twice a day

(bid). The suggested schedule for increasing the dosage is: increase in

1.5 mg for both doses every two to four weeks, to a maximum 6 mg 'bid'

(total of 12 mg/day)

She was conversing again. We laughed during every visit. She was

engaged again in conversation...

Enjoy these moments! It's wonderful!

PS -- those " NARANJA " moments were what I called those little miracles

I'd see... like mom asking for jugo de naranja!; knitting a few stiches

by herself; accurately completing the 'finish the phrase' games;

sarcastic comments to me; etc, etc, etc, :) (LUCKY ME!!)

[Guest guest]

,

After my mom's diagnosis of LBD rather than PD, she had excellent

improvement with Aricept. That and getting off the Parkisnons' meds. She felt

good enough to travel and visit her sister's home.. She (again) carried on

complete conversations with her friends, and attended a two highschool

graduations for grandkids. She started reading the newspaper again, and asked

to order the large print Readers Digest.

We didn't call it that at the time, but in retrospect, those were wonderful

Naranja days.

Dann

[Guest guest]

Hi everyone,

Thanks again for all the info on the Exelon...It's so good to hear

all the different results, etc...because you surely don't find out

any of that from the Doctors.

I had a very rough day with Mom today. I think I spoke too soon

about the Exelon. It's still shocking to see this angry and agitated

side of a woman who wouldn't have said " boo " before...and now she

just will say whatever is on her mind..which isn't so bad; except

that to the " normal " person it doesn't make sense...it's because of

the LBD, she just doesn't comprehend that well.

Quick example about today...last week I took her to get an eye exam

and two new pair of glasses. She said, " I don't want old lady

glasses, I want some color " . Mind you, she is going to be 79 on the

14th of November. So I said fine Mom, that will be nice...you have

such beautiful green eyes, we can get some with some color...she also

has macular degeneration and really doesn't see very well, at

all...Ok, so now the glasses are ready, I go down today, give her a

shower and she puts on a nice purple top to match the glasses we were

going to pick up...(one pair purplish and one roseish in color) well

we go into the Doctors and the girl brings the glasses out to my Mom

and takes it out of the case and my Mom says, " where the hell are the

purple glasses? " ..I said, " right here Mom, they are purple, these are

the ones we picked last week " ...Well, there was no convincing her...I

thought she was going to punch the poor secretary...I think she knew

something was wrong...The secretary even went in and got the glasses

off the rack to show her what she had picked and that they were the

same...well, it was a horror show and I almost broke down and started

crying...I could see my Mother getting so angry and on the way out

she was talking to herself and it was not pleasant.

From there I took her food shopping...to make a long story short...I

get home with her, after listening to about 2 hours of them not being

purple or rose and do people think she is stupid and what the hell is

wrong with everyone and so on and so forth...

Here's the punch line and here's what we go through...I'm sure you

can all relate...

We take off our coats and I take the glasses out of the case, the

purple ones, she wouldn't wear them out of the Doctors, said she

couldn't see through them....and I clean them and I get a mirror, a

big round one and I say Mom come over here by the big window in the

living room, with natural light...she did and I said, " here, Mom put

these on and tell me what color they are " ? She put them on and

looked in the mirror and said, " WELL, THEY ARE PURPLE " ...and how did

that happen and who the hell made them purple now????? And it went

on and on for the rest of the day between the two pair of

glasses...She also told me that at the Doctors she was so

disappointed that they weren't purple that she wanted to take the two

pair and smash them on the floor. I was in shock...

It is trying...please send up a BIG PRAYER for me...I need it

today...I am going to bed and hopefully will sleep for 12 hours...I

need to rejuvenate... :-)

I feel better...thanks...I needed to tell this to someone; especially

someone that understands...it's usually not this bad, but sometimes

it's worse than others, as I'm sure you are all well aware of...

My best,

Carol Incognito :-)

>

> Yes, my mom began her " NARANJA! " moments after starting the Exelon -

-

> going by the suggested dosage for those w/ LBD (For Exelon

> (rivastigmine), it shows the starting dose as 1.5 mg, twice a day

> (bid). The suggested schedule for increasing the dosage is:

increase in

> 1.5 mg for both doses every two to four weeks, to a maximum 6

mg 'bid'

> (total of 12 mg/day)

>

> She was conversing again. We laughed during every visit. She was

> engaged again in conversation...

>

> Enjoy these moments! It's wonderful!

>

>

>

> PS -- those " NARANJA " moments were what I called those little

miracles

> I'd see... like mom asking for jugo de naranja!; knitting a few

stiches

> by herself; accurately completing the 'finish the phrase' games;

> sarcastic comments to me; etc, etc, etc, :) (LUCKY ME!!)

>

[Guest guest]

i beleive my dad was taken off exelon and namenda becuase even with hctz * i

think * and /or fludrocort my dads blood pressure was very erractic. he used

to have high blood pressure but when it turned orthostatic he would get as low

as 60/40 when trying to walk. so the doctors felt that it would be best to

discontinue the dementia meds. lookng back i think it was the right decision.

hugs sharon,

ps i had the doses wrong on exelon i said dad took 12 mg twice a day, he didnt

it was 6mg twice a day. i got the dosages wrong in my brain right now. sorry

for any confusion i may have causeed. hugs, sharon

---- " J. Brock " wrote:

My mom is not on EXELON, she is on Razadyne (formerly Reminyl). They started

her on that about 3 years ago, and she did very well until around July of this

year when she started to go down hill fast. In August they also put her on

NAMENDA, and what a change! She still takes the maximum dosage of Razadyne

along with the NAMENDA. It's like having my mother back again, (almost) not

this lady that stayed angry with me ALL THE TIME! Don't know how long it will

last, but I'm lovin' it!

My mom also has severe orthostatic hypotension, hospitalized for a week with

it back in April of 06. They gave her Floudrocortisone for it, but did not take

her off the Razadyne. I wonder why they took Sharon's dad off the Exelon?

LadySmilingAtU2@... wrote:

i wanted to add something tho, our neurologist changed the exelon,

every 3 weeks and slowly, he took one capsule a day 1.5 for 3 weeksn then took 2

capsules a day, then went to 3 mg once a day with 1.5 at nite, and then 4 weeks

later both doses were 3mg, he stayed there about 4 weeks, then went to 6mg once

a day 3 mgs onc e a day, then changed to 6mg twice a day, then 12 mg once a day

hten twice a day, where he stayed for 6 months or so before we tried adding

namenda but dad had developed severe orthosatic bp changes taht we had to stop

the dementia medicnes. goodluck and hugs, sharon m

---- " carol.incognito " wrote:

Hi everyone,

I was wondering if anyone has seen a lot of improvement with Exelon?

I started my Mom out on 1.5 mgs. about 3 1/2 weeks ago and then

increased to 3.0 mgs. last week. Don't get me wrong, there are still

problems, but nothing like they were. She is doing remarkably

different on it. I see a huge change and I was almost not going to

try again. The first time we tried it at the 3.0 and the doctor told

her that she was giving her something to help with her memory, my Mom

had all kinds of side effects; so, thinking it was from the RX I

stopped it. But, then we tried again and didn't tell Mom and I

started her off at the 1.5 dose first. I am on cloud 9 with the

change. I know there are no " fixer " drugs out there but I am very

pleased with the change. This is the only med she is on other than

heart, diabetes, a statin, vitamins...well that's enough pills. :-(

Point is, no other drugs for LBD.

Just curious if anyone else has had any luck with this?

My Mom is almost 79 and just DX with Dementia with Lewy Bodies...she

has been sick for 6+ years, referred to as vascular dementia before

the new DX....this all happened after Dad died... for anyone that

doesn't know my story...

Carol Incognito :-)

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

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

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small

Business.

[Guest guest]

Hi Carol, Even though my husband is doing well on Exelon

its doesnt mean he isnt nasty because he is , and I just cant deal with him

anymore ,he hates everybody mostly me , hope I didnt miss lead anyone .....

take care ...... Eileen B

-- Re: EXELON Has anyone seen great improvement with?

Hi everyone,

Thanks again for all the info on the Exelon...It's so good to hear

all the different results, etc...because you surely don't find out

any of that from the Doctors.

I had a very rough day with Mom today. I think I spoke too soon

about the Exelon. It's still shocking to see this angry and agitated

side of a woman who wouldn't have said " boo " before...and now she

just will say whatever is on her mind..which isn't so bad; except

that to the " normal " person it doesn't make sense...it's because of

the LBD, she just doesn't comprehend that well.

Quick example about today...last week I took her to get an eye exam

and two new pair of glasses. She said, " I don't want old lady

glasses, I want some color " . Mind you, she is going to be 79 on the

14th of November. So I said fine Mom, that will be nice...you have

such beautiful green eyes, we can get some with some color...she also

has macular degeneration and really doesn't see very well, at

all...Ok, so now the glasses are ready, I go down today, give her a

shower and she puts on a nice purple top to match the glasses we were

going to pick up...(one pair purplish and one roseish in color) well

we go into the Doctors and the girl brings the glasses out to my Mom

and takes it out of the case and my Mom says, " where the hell are the

purple glasses? " ..I said, " right here Mom, they are purple, these are

the ones we picked last week " ...Well, there was no convincing her...I

thought she was going to punch the poor secretary...I think she knew

something was wrong...The secretary even went in and got the glasses

off the rack to show her what she had picked and that they were the

same...well, it was a horror show and I almost broke down and started

crying...I could see my Mother getting so angry and on the way out

she was talking to herself and it was not pleasant.

From there I took her food shopping...to make a long story short...I

get home with her, after listening to about 2 hours of them not being

purple or rose and do people think she is stupid and what the hell is

wrong with everyone and so on and so forth...

Here's the punch line and here's what we go through...I'm sure you

can all relate...

We take off our coats and I take the glasses out of the case, the

purple ones, she wouldn't wear them out of the Doctors, said she

couldn't see through them....and I clean them and I get a mirror, a

big round one and I say Mom come over here by the big window in the

living room, with natural light...she did and I said, " here, Mom put

these on and tell me what color they are " ? She put them on and

looked in the mirror and said, " WELL, THEY ARE PURPLE " ...and how did

that happen and who the hell made them purple now????? And it went

on and on for the rest of the day between the two pair of

glasses...She also told me that at the Doctors she was so

disappointed that they weren't purple that she wanted to take the two

pair and smash them on the floor. I was in shock...

It is trying...please send up a BIG PRAYER for me...I need it

today...I am going to bed and hopefully will sleep for 12 hours...I

need to rejuvenate... :-)

I feel better...thanks...I needed to tell this to someone; especially

someone that understands...it's usually not this bad, but sometimes

it's worse than others, as I'm sure you are all well aware of...

My best,

Carol Incognito :-)

>

> Yes, my mom began her " NARANJA! " moments after starting the Exelon -

-

> going by the suggested dosage for those w/ LBD (For Exelon

> (rivastigmine), it shows the starting dose as 1.5 mg, twice a day

> (bid). The suggested schedule for increasing the dosage is:

increase in

> 1.5 mg for both doses every two to four weeks, to a maximum 6

mg 'bid'

> (total of 12 mg/day)

>

> She was conversing again. We laughed during every visit. She was

> engaged again in conversation...

>

> Enjoy these moments! It's wonderful!

>

>

>

> PS -- those " NARANJA " moments were what I called those little

miracles

> I'd see... like mom asking for jugo de naranja!; knitting a few

stiches

> by herself; accurately completing the 'finish the phrase' games;

> sarcastic comments to me; etc, etc, etc, :) (LUCKY ME!!)

>

[Guest guest]

Hi, everyone,

I read all the mail but don't always have time to respond as I would like.

This one from you, Carol incognito, is what I am facing. Thank you with all

my heart for telling your experience. It must have been pretty awful. I am so

sorry. I see little traits like that in my darling husband, and forewarned

is forearmed. There have been a number of stories told on this list that have

already helped me to see it coming, and to figure out a way to handle it, and

to stay in control of myself. I would break down in a minute if that happened

to me, especially if I was unaware up front.

That is a bad situation to say the least, and then to tolerate more that two

hours, had to have drained your nerves unmercifully. I hope you, and any of

you other dear caregivers, get the rest you need.

Love a bunch,

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 10/21/2006 6:10:50 AM Central Daylight Time,

carol.incognito@... writes:

Hi everyone,

Thanks again for all the info on the Exelon...It'Thanks again for all t

all the different results, etc...because you surely don't find out

any of that from the Doctors.

I had a very rough day with Mom today. I think I spoke too soon

about the Exelon. It's still shocking to see this angry and agitated

side of a woman who wouldn't have said " boo " before...and now she

just will say whatever is on her mind..which isn't so bad; except

that to the " normal " person it doesn't make sense...it's because of

the LBD, she just doesn't comprehend that well.

Quick example about today...last week I took her to get an eye exam

and two new pair of glasses. She said, " I don't want old lady

glasses, I want some color " . Mind you, she is going to be 79 on the

14th of November. So I said fine Mom, that will be nice...you have

such beautiful green eyes, we can get some with some color...she also

has macular degeneration and really doesn't see very well, at

all...Ok, so now the glasses are ready, I go down today, give her a

shower and she puts on a nice purple top to match the glasses we were

going to pick up...(one pair purplish and one roseish in color) well

we go into the Doctors and the girl brings the glasses out to my Mom

and takes it out of the case and my Mom says, " where the hell are the

purple glasses? " ..I said, " right here Mom, they are purple, these are

the ones we picked last week " ...Well, there was no convincing her...I

thought she was going to punch the poor secretary...thought she was going

something was wrong...The secretary even went in and got the glasses

off the rack to show her what she had picked and that they were the

same...well, it was a horror show and I almost broke down and started

crying...I could see my Mother getting so angry and on the way out

she was talking to herself and it was not pleasant.

From there I took her food shopping...to make a long story short...I

get home with her, after listening to about 2 hours of them not being

purple or rose and do people think she is stupid and what the hell is

wrong with everyone and so on and so forth...

Here's the punch line and here's what we go through...I'Here's the punc

can all relate...

We take off our coats and I take the glasses out of the case, the

purple ones, she wouldn't wear them out of the Doctors, said she

couldn't see through them....and I clean them and I get a mirror, a

big round one and I say Mom come over here by the big window in the

living room, with natural light...she did and I said, " here, Mom put

these on and tell me what color they are " ? She put them on and

looked in the mirror and said, " WELL, THEY ARE PURPLE " ...and how did

that happen and who the hell made them purple now????? And it went

on and on for the rest of the day between the two pair of

glasses...She also told me that at the Doctors she was so

disappointed that they weren't purple that she wanted to take the two

pair and smash them on the floor. I was in shock...

It is trying...please send up a BIG PRAYER for me...I need it

today...I am going to bed and hopefully will sleep for 12 hours...I

need to rejuvenate..need

I feel better...thanks.I feel better...thanks.<WBR>..I needed to tell

someone that understands.someone that understands.<WBR>..it's usuall

it's worse than others, as I'm sure you are all well aware of...

My best,

Carol Incognito :-)

>

> Yes, my mom began her " NARANJA! " moments after starting the Exelon -

-

> going by the suggested dosage for those w/ LBD (For Exelon

> (rivastigmine) (rivastigmine)<WBR>, it shows the starting dose as

> (bid). The suggested schedule for increasing the dosage is:

increase in

> 1.5 mg for both doses every two to four weeks, to a maximum 6

mg 'bid'

> (total of 12 mg/day)

>

> She was conversing again. We laughed during every visit. She was

> engaged again in conversation. en

>

> Enjoy these moments! It's wonderful!

>

>

>

> PS -- those " NARANJA " moments were what I called those little

miracles

> I'd see... like mom asking for jugo de naranja!; knitting a few

stiches

> by herself; accurately completing the 'finish the phrase' games;

> sarcastic comments to me; etc, etc, etc, :) (LUCKY ME!!)

>

[Guest guest]

Oh you poor woman, Eileen! I have seen my wonderful man like that until the

doctor calmed him down with Zoloft 150mg. Of course if that trait is normal

for the person, it is only going to be worse with LBD. My husband is normally

very nice. I am so sorry, please keep writing, Eileen, and get this terrible

load off your shoulders some if at all possible.

Imogene

In a message dated 10/21/2006 6:51:47 AM Central Daylight Time,

ebeaudin@... writes:

Hi Carol, Even though my husband is doing well on Exelon

its doesnt mean he isnt nasty because he is , and I just cant deal with him

anymore ,he hates everybody mostly me , hope I didnt miss lead anyone .....

take care ...... Eileen B

[Guest guest]

I am so sorry you had a rough day. Sometime life really stinks when your LO is

having one of those days. Sometimes we wish we could put a big sign around our

dear ones neck that says DEMENTIA (since everyone knows what that is) so sales

people, servers, grocey baggers, bank tellers etc. will know they are not just

behaving badly. I will say an extra prayer for your mom and you today that

today and the coming days will be better.

Hugs

Vallerie

[Guest guest]

Some caregivers have cards printed up and discreetly pass them to the

clerks, or whoever is getting the brunt of the abuse. I certainly plan to have

some

done, because my LO has embarrassed me a few times already. he has

considerable brain shrinkage, and especially the frontal lobe. That means

inhibitions

about what is proper behavior or not.

Imogene

In a message dated 10/21/2006 1:07:35 PM Central Daylight Time,

vjedmonds@... writes:

I am so sorry you had a rough day. Sometime life really stinks when your LO

is having one of those days. Sometimes we wish we could put a big sign around

our dear ones neck that says DEMENTIA (since everyone knows what that is) so

sales people, servers, grocey baggers, bank tellers etc. will know they are

not just behaving badly. I will say an extra prayer for your mom and you today

that today and the coming days will be better.

Hugs

Vallerie

[Guest guest]

Boy Howdy! Donna, you named that right. LBD hates all of us! I just talked

to my husband's daughter, and told her that my daughter had crocheted a

beautiful lap throw for her, and then told her how her daddy was so confused

some

times, and asked a dozen time where are we going? Why? What are we doing next?

Why? Where are we gong now?

He gets very confused. Like the time he needed to repair a pipe leak in the

back yard. He dug the hole, bailed out the water, and then proceeded to cut

the place out that had the leak, instead of put a fitting on it, he cut it

out. That right. He cut a foot of pipe out because it had a leak in it. Then of

course he had to replace the foot of pipe and use two fittings. Oh that poor

man.

That was before I knew he was sick. I couldn't help him at all. All I heard

was fussing, and I would have to leave. I didn't realize he was trying with

all he had in him, and it was upsetting to him to try to deal with this

stressful LBD. I felt so bad for him once I realized doing repairs was too hard

for

him. But, there was a time he tackled all of them. I told the doctor about

this. It was just one of many experiences we have had with this LBD that hates

us.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 10/21/2006 2:17:26 PM Central Daylight Time,

twomido@... writes:

Eileen,

Your husband doesn't hate you. The disease doesn't like you and I am sure

there is a difference.

Lots of 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.

[Guest guest]

What a beautiful thing to say! I kinda like you too, Kinda? Like a whole

bunch. (big smile)

Imogene

In a message dated 10/21/2006 2:14:44 PM Central Daylight Time,

carol.incognito@... writes:

Imogene,

As usual you are always there with just the most kind words...you are

one of my favorites...one of my favorites...<WBR>hope you have a good

LBD...we can only wish, hope and pray...

My best to you gals,

Carol Incognito :-)

[Guest guest]

I make time, dear Eileen. I need cheering up, and there is no better way

than being there for someone else. So we both benefit. I love you, and this

gorup, very much.

are are all a help to each other.

Love a bunch

Imogene

In a message dated 10/21/2006 4:32:21 PM Central Daylight Time,

ebeaudin@... writes:

Dear Imogene; you are a special and a kind person as

you help so many on here and with all you have to do

for your man and still have time to cheer me up I thank

you and all here ... Eileen B

[Guest guest]

Hi Vallerie,

Thanks for writing and for the prayers...I just woke up, Saturday

2:30 PM...I feel better...and today when I think about it it even

seems a little funny...The purple glasses...wow...I only told half of

the story..I could have written for another hour. :-) My Mother is

so sweet too, I think that is what is so shocking to me as her

daughter. When I got home I called her as I always do and she was

saying, " oh thank you sweetheart for everything you do for me and

what would I do without you and all this nice stuff with the most

normal tone of voice " . Well, again thanks for the prayers...I'm

going back to bed...I am still worn out...lol

Carol Incognito

- In LBDcaregivers , Vallerie Edmonds

wrote:

>

> I am so sorry you had a rough day. Sometime life really stinks when

your LO is having one of those days. Sometimes we wish we could put

a big sign around our dear ones neck that says DEMENTIA (since

everyone knows what that is) so sales people, servers, grocey

baggers, bank tellers etc. will know they are not just behaving

badly. I will say an extra prayer for your mom and you today that

today and the coming days will be better.

> Hugs

> Vallerie

>

>

>

[Guest guest]

>

>

> Oh you poor woman, Eileen! I have seen my wonderful man like that

until the

Dear Eileen,

I know how difficult it is to deal with the meaness of our LO's from

this disease. It can just really be frustrating and hurtful and you

just feel like your are running yourself ragged and you get no thanks

and just a pile of crap most of the time...I remind myself over and

over that it is not poor Mom and it's LBD. I keep saying to myself

that the way she must feel is a 1000's much worse than what I feel.

She has even expressed those feelings to me because sometimes we talk

about her nastiness...I will say a prayer for you Eileen and your

husband... Carol Incognito :-)

Imogene,

As usual you are always there with just the most kind words...you are

one of my favorites...hope you have a good weekend in the land of

LBD...we can only wish, hope and pray...

My best to you gals,

Carol Incognito :-)

> doctor calmed him down with Zoloft 150mg. Of course if that trait

is normal

> for the person, it is only going to be worse with LBD. My husband

is normally

> very nice. I am so sorry, please keep writing, Eileen, and get

this terrible

> load off your shoulders some if at all possible.

> Imogene

>

> In a message dated 10/21/2006 6:51:47 AM Central Daylight Time,

> ebeaudin@... writes:

>

>

>

>

> Hi Carol, Even though my husband is doing well on Exelon

> its doesnt mean he isnt nasty because he is , and I just cant deal

with him

> anymore ,he hates everybody mostly me , hope I didnt miss lead

anyone .....

> take care ...... Eileen B

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Eileen,

Your husband doesn't hate you. The disease doesn't like you and I am sure there

is a difference.

Lots of 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: EXELON Has anyone seen great improvement with?

Hi everyone,

Thanks again for all the info on the Exelon...It's so good to hear

all the different results, etc...because you surely don't find out

any of that from the Doctors.

I had a very rough day with Mom today. I think I spoke too soon

about the Exelon. It's still shocking to see this angry and agitated

side of a woman who wouldn't have said " boo " before...and now she

just will say whatever is on her mind..which isn't so bad; except

that to the " normal " person it doesn't make sense...it's because of

the LBD, she just doesn't comprehend that well.

Quick example about today...last week I took her to get an eye exam

and two new pair of glasses. She said, " I don't want old lady

glasses, I want some color " . Mind you, she is going to be 79 on the

14th of November. So I said fine Mom, that will be nice...you have

such beautiful green eyes, we can get some with some color...she also

has macular degeneration and really doesn't see very well, at

all...Ok, so now the glasses are ready, I go down today, give her a

shower and she puts on a nice purple top to match the glasses we were

going to pick up...(one pair purplish and one roseish in color) well

we go into the Doctors and the girl brings the glasses out to my Mom

and takes it out of the case and my Mom says, " where the hell are the

purple glasses? " ..I said, " right here Mom, they are purple, these are

the ones we picked last week " ...Well, there was no convincing her...I

thought she was going to punch the poor secretary...I think she knew

something was wrong...The secretary even went in and got the glasses

off the rack to show her what she had picked and that they were the

same...well, it was a horror show and I almost broke down and started

crying...I could see my Mother getting so angry and on the way out

she was talking to herself and it was not pleasant.

From there I took her food shopping...to make a long story short...I

get home with her, after listening to about 2 hours of them not being

purple or rose and do people think she is stupid and what the hell is

wrong with everyone and so on and so forth...

Here's the punch line and here's what we go through...I'm sure you

can all relate...

We take off our coats and I take the glasses out of the case, the

purple ones, she wouldn't wear them out of the Doctors, said she

couldn't see through them....and I clean them and I get a mirror, a

big round one and I say Mom come over here by the big window in the

living room, with natural light...she did and I said, " here, Mom put

these on and tell me what color they are " ? She put them on and

looked in the mirror and said, " WELL, THEY ARE PURPLE " ...and how did

that happen and who the hell made them purple now????? And it went

on and on for the rest of the day between the two pair of

glasses...She also told me that at the Doctors she was so

disappointed that they weren't purple that she wanted to take the two

pair and smash them on the floor. I was in shock...

It is trying...please send up a BIG PRAYER for me...I need it

today...I am going to bed and hopefully will sleep for 12 hours...I

need to rejuvenate... :-)

I feel better...thanks...I needed to tell this to someone; especially

someone that understands...it's usually not this bad, but sometimes

it's worse than others, as I'm sure you are all well aware of...

My best,

Carol Incognito :-)

>

> Yes, my mom began her " NARANJA! " moments after starting the Exelon -

-

> going by the suggested dosage for those w/ LBD (For Exelon

> (rivastigmine), it shows the starting dose as 1.5 mg, twice a day

> (bid). The suggested schedule for increasing the dosage is:

increase in

> 1.5 mg for both doses every two to four weeks, to a maximum 6

mg 'bid'

> (total of 12 mg/day)

>

> She was conversing again. We laughed during every visit. She was

> engaged again in conversation...

>

> Enjoy these moments! It's wonderful!

>

>

>

> PS -- those " NARANJA " moments were what I called those little

miracles

> I'd see... like mom asking for jugo de naranja!; knitting a few

stiches

> by herself; accurately completing the 'finish the phrase' games;

> sarcastic comments to me; etc, etc, etc, :) (LUCKY ME!!)

>

[Guest guest]

Hi Imogene,

What do they have printed on the cards? Did you ever see one?

Carol Incognito :-)

>

>

> Some caregivers have cards printed up and discreetly pass them to

the

> clerks, or whoever is getting the brunt of the abuse. I certainly

plan to have some

> done, because my LO has embarrassed me a few times already. he has

> considerable brain shrinkage, and especially the frontal lobe. That

means inhibitions

> about what is proper behavior or not.

> Imogene

>

>

> In a message dated 10/21/2006 1:07:35 PM Central Daylight Time,

> vjedmonds@... writes:

>

>

>

>

> I am so sorry you had a rough day. Sometime life really stinks when

your LO

> is having one of those days. Sometimes we wish we could put a big

sign around

> our dear ones neck that says DEMENTIA (since everyone knows what

that is) so

> sales people, servers, grocey baggers, bank tellers etc. will know

they are

> not just behaving badly. I will say an extra prayer for your mom

and you today

> that today and the coming days will be better.

> Hugs

> Vallerie

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Dear Imogene; you are a special and a kind person as

you help so many on here and with all you have to do

for your man and still have time to cheer me up I thank

you and all here ... Eileen B

-- Re: Re: EXELON Has anyone seen great improvement

with?

Oh you poor woman, Eileen! I have seen my wonderful man like that until the

doctor calmed him down with Zoloft 150mg. Of course if that trait is normal

for the person, it is only going to be worse with LBD. My husband is

normally

very nice. I am so sorry, please keep writing, Eileen, and get this terrible

load off your shoulders some if at all possible.

Imogene

In a message dated 10/21/2006 6:51:47 AM Central Daylight Time,

ebeaudin@... writes:

Hi Carol, Even though my husband is doing well on Exelon

its doesnt mean he isnt nasty because he is , and I just cant deal with him

anymore ,he hates everybody mostly me , hope I didnt miss lead anyone .....

take care ...... Eileen B

[Guest guest]

Thats a very good idea, Imogene. I have also heard that some caredgiver call

ahead if they are going to eat out so the restaurant can inform the server ahead

of time that someone they are serving has specials needs

Vallerie

Some caregivers have cards printed up and discreetly pass them to the

clerks, or whoever is getting the brunt of the abuse. I certainly plan to have

some

done, because my LO has embarrassed me a few times already. he has

considerable brain shrinkage, and especially the frontal lobe. That means

inhibitions

about what is proper behavior or not.

Imogene

In a message dated 10/21/2006 1:07:35 PM Central Daylight Time,

vjedmonds@sbcglobal .net writes:

I am so sorry you had a rough day. Sometime life really stinks when your LO

is having one of those days. Sometimes we wish we could put a big sign around

our dear ones neck that says DEMENTIA (since everyone knows what that is) so

sales people, servers, grocey baggers, bank tellers etc. will know they are

not just behaving badly. I will say an extra prayer for your mom and you today

that today and the coming days will be better.

Hugs

Vallerie