Re: meds in late stage LBD

April 7, 2006

Hello dspringer56@...

Just wondering if you would give your Dad an antibiotic if he had a UTI?

Plus I have another question about the long " end stage " patients as your Dad

seems to be in...Does he (or any other LBD/PDD LO) have any " modeling " or bluing

at the joints of the fingers, toes or elbows? My Uncle's hands have been

getting " bluer " each week and he is asking for oxygen more frequently. Just

wanted

a comparison.

Thank you so much for your time. Much Peace, Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - probably has PDD

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have

started up again.

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the

same since

Daily BP usually 68/52

Severe shoulder pain, hip pain, and shortness of breath.

Now taking Trilisate Liquid for pain - seems to be working

* * * * * *

I know people have been asking about how long to keep someone on

meds with LBD

Here is our story:

My dad 81 yrs old has had LBD apx. 7yrs. (not sure when he really

started)However since last November, he has lost a great deal of

muscle control and now can no longer walk or get up on his own.. We

reduced Seroquel at that time(since he is sleeping or has his eyes

closed most of the time) starting in Nov by reducing one dose for a

week and seeing results and continuing on. When we reduced the

final dose Dad " sprung in to action " and amazingly got up and tried

to attack a patient but was weak enough for the staff to divert. So

he is on one dose of seroquel. They are now going to try

eliminating the REMERON (takes it at night to sleep ) We tried

Exelon about two years ago when he was semi coherent and could still

get out a sentence or two. We found it worked for a few months after

reaching maximum dose but soon had no effect so we eliminated it..

He had been on Reminyl earlier on but it seemed to have no impact

on him.. His biggest problems came with the hallucinations and the

panic and anxiety they created for him. He was quite strong and

quite physical when agitated so the seroquel (given 3x a day with

an " as needed dose " helped most of the time... But that stage

eventually passed and he became calmer but less in this world with

little conversation--mostly gesturing with his eyes..

we are not sure how long this final stage will last because he is so

healthy otherwise.. But our philosophy has been LESS is MORE and if

there is no longer a need for something we eliminate it.. We are not

doing anything if an infection sets in but rather let nature take

its course because he has no quality of life and we want him to find

peace.

April 7, 2006

Hi, Stevie,

My dad's feet and toes would get " blue " for about the last six months. It

didn't start in his hands until several weeks before he died. Hours before he

passed, the " modeling " was pronounced around his knees and elbows. He never

had breathing problems until just hours before he passed away. I hope I am

not alarming you, I just remember how much I wanted information when my dad

was in Mr. B's place. Everyone is different, so it is always hard to tell

exactly where anyone is in their journey. Mr. B's " blueness " may just be

related to his breathing difficulties. How has his food intake been lately?

Do

his hands stay blue all the time, or does it come and go somewhat? Sorry for

all the questions - you know how you start thinking about stuff and it just

flies out?!! I am keeping you and Mr. B in my thoughts.

Hugs,

Piper

April 7, 2006

Hello Piper,

Mr. B's hands have been getting " bluer " each week and a little bit of it goes

away when I put oxygen on him. I can tell they are " bluer " just by asking

him a question. He will just stare at me and not say a word. I'm sure it's

because of his oxygen level intake. We have had the oxy tank for the past six

months and he started using it a lot in the past few weeks. His feet have been

blue for quite a while and now I notice they stay a bit blue even when he puts

them up.

You are right....one never quite knows what the time line will be. I like to

ask the questions to see if there are any " pattern " to any of this madness.

I want myself, and others. to be somewhat prepared. This could go on for a

few more years. He eats everything that is put in front of him....which is

highly unusual....and he finds great satisfaction in rallying back. LOL He's a

card!

Thank you for the thoughts and hugs. Much wonderful Peace to you, Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - probably has PDD

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have

started up again.

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the

same since

Daily BP usually 68/52

Severe shoulder pain, hip pain, and shortness of breath.

Now taking Trilisate Liquid for pain - seems to be working

* * * * * * * *

Hi, Stevie,

My dad's feet and toes would get " blue " for about the last six months. It

didn't start in his hands until several weeks before he died. Hours before

he

passed, the " modeling " was pronounced around his knees and elbows. He

never

had breathing problems until just hours before he passed away. I hope I am

not alarming you, I just remember how much I wanted information when my dad

was in Mr. B's place. Everyone is different, so it is always hard to tell

exactly where anyone is in their journey. Mr. B's " blueness " may just be

related to his breathing difficulties. How has his food intake been lately?

Do

his hands stay blue all the time, or does it come and go somewhat? Sorry for

all the questions - you know how you start thinking about stuff and it just

flies out?!! I am keeping you and Mr. B in my thoughts.

Hugs,

Piper

April 7, 2006

Stevie, I have been reading about you and Mr.B. for the last several months

and you are both such neat people and very special.

I just wanted to comment on the blue you mentioned. Have you asked the

nurse if it is because of lack of circulation and exercise? I have noticed

that,

of all things, my husband's heels are blue and I think it is because when he

goes to sleep he leans on his heels all night. It is odd looking, that's for

sure. And, BTW, his hands have been blue for years and doctors and nurses

always comment on it. I guess it would stand to reason that if our LO 's

aren't moving like they used to it would show up. I am wondering if the blue

you

are referring to is different in some way. I, too, want to be observant of

what is occurring as time goes by. Arlene

April 7, 2006

Hello Arlene,

Hospice said the blue in his feet are from bad circulation and lack of

exercise but the blue in his hands are from loosing " lung

capacity " ....basically, he

is " shallow breathing " because his lungs and heart are weakening. Knowing

Mr. B and his " comebacks " they just don't know how long he will be able to keep

it up.

The blue color in his hands are a different color blue...almost purplish and

his nails are " white, " like something is pressing on them, with a deep " red "

at the tips of his fingers. Also, the Hospice nurse said to check the rim of

his ears to see if they are a deep red or blue/purplish color. That indicates

he is not breathing fully, the lungs and heart weakening thing.

It's good to know what is going on with any disease or illness and as we all

know we will learn from this experience and be " stronger " for whatever is next

to come in our lives.

Thank you for your message and I send the most wonderful Peace and strength

for you and your LO. Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - probably has PDD

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have

started up again.

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the

same since

Daily BP usually 68/52

Severe shoulder pain, hip pain, and shortness of breath.

Now taking Trilisate Liquid for pain - seems to be working - is working!

* * * * * * * * * *

Stevie, I have been reading about you and Mr.B. for the last several months

and you are both such neat people and very special.

I just wanted to comment on the blue you mentioned. Have you asked the

nurse if it is because of lack of circulation and exercise? I have noticed

that,

of all things, my husband's heels are blue and I think it is because when he

goes to sleep he leans on his heels all night. It is odd looking, that's for

sure. And, BTW, his hands have been blue for years and doctors and nurses

always comment on it. I guess it would stand to reason that if our LO 's

aren't moving like they used to it would show up. I am wondering if the

blue you

are referring to is different in some way. I, too, want to be observant of

what is occurring as time goes by. Arlene

April 7, 2006

Hello ,

I asked that question because, as you have done, I have also thought about,

and am faced with (as we all are), the same end of life issues. End of life

" comfort measures " are sort of like.....what would you do if a LO, who had a

terminal disease and a DNR, fell down a flight of stairs and was bleeding? You

can't just stand there and watch them bleed to death because they are going to

die anyway. You would need to do what is humane. Stop the bleeding, and get

the necessary help to make them comfortable.

The antibiotics for Mr. B's UTI is not going to cure his LBD but make him

more " comfortable " as he was quite uncomfortable because of the urgency and pain

of urinating. I'm sure if he had Pneumonia I would also think along those

lines. Yes, this message board has been so helpful in all of the decisions that

I

have had to make! I would be lost without it! (Thank you all for being

here!)

, I am so sorry your Mum sobs. That is so sad. Mr. B doesn't " cry "

but tears up whenever he remembers one of his friends, or his house in Utah, or

his flowers, or hears something endearing. I just hug him and tell him that

things will turn out like they should.

And, I do know what you mean when you say " she's still in there. " She is a

cocoon, waiting to be a beautiful Butterfly. Please give her a big hug from me

to her.

Thank you for being here. Much wonderful Peace to you and your Mum, Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - probably has PDD

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have

started up again.

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the

same since

Daily BP usually 68/52

Severe shoulder pain, hip pain, and shortness of breath.

Now taking Trilisate Liquid for pain - seems to be working

* * * * * * *

Stevie,

I have done a lot of soul searching to end of life comfort measures vs.

prolonging life (or

death). I don't know that I would be strong enough to withhold antibiotics

for UTI, possibly

for pneumonia. The end will tell the tale. Such a difficult and yet

realistic decision.

This conference is such a viable tool for helping us come to decisions before

they need to

be made.

Mom's dietician today mentioned her eating less. No weight loss even

indicated, but they

are on top of her reduced intake. I was able to admit to end of life, do

what is needed to

keep her as comfortable as possible. The dietician seemed surprised and

relieved at my

realistic approach to what is ahead, thanks to all of you. Now that she is

off her Aricept,

her decline is very evident.

As low as Mom is, there is no obvious bluing to date, unless she cries

inconsolably and I

have to remind her to take a breath. Some things connect and she responds

with sobbing.

No oxyen needed.

However, today when I asked if she wanted the chocolate milk I always take

with me she

replied, " YOU BET " . She's still in there.

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to

give up her

licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol twice a day.

Off Aricept since Feb./06-now eating and drinking less, uncommunicative

>

> Hello dspringer56@...

>

> Just wondering if you would give your Dad an antibiotic if he had a UTI?

> Plus I have another question about the long " end stage " patients as your

Dad

> seems to be in...Does he (or any other LBD/PDD LO) have any " modeling " or

bluing

> at the joints of the fingers, toes or elbows? My Uncle's hands have been

> getting " bluer " each week and he is asking for oxygen more frequently.

Just wanted

> a comparison.

>

> Thank you so much for your time. Much Peace, Stevie

April 7, 2006

Stevie,

I have done a lot of soul searching to end of life comfort measures vs.

prolonging life (or

death). I don't know that I would be strong enough to withhold antibiotics for

UTI, possibly

for pneumonia. The end will tell the tale. Such a difficult and yet realistic

decision.

This conference is such a viable tool for helping us come to decisions before

they need to

be made.

Mom's dietician today mentioned her eating less. No weight loss even indicated,

but they

are on top of her reduced intake. I was able to admit to end of life, do what

is needed to

keep her as comfortable as possible. The dietician seemed surprised and

relieved at my

realistic approach to what is ahead, thanks to all of you. Now that she is off

her Aricept,

her decline is very evident.

As low as Mom is, there is no obvious bluing to date, unless she cries

inconsolably and I

have to remind her to take a breath. Some things connect and she responds with

sobbing.

No oxyen needed.

However, today when I asked if she wanted the chocolate milk I always take with

me she

replied, " YOU BET " . She's still in there.

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to give

up her

licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol twice a day.

Off Aricept since Feb./06-now eating and drinking less, uncommunicative

>

> Hello dspringer56@...

>

> Just wondering if you would give your Dad an antibiotic if he had a UTI?

> Plus I have another question about the long " end stage " patients as your Dad

> seems to be in...Does he (or any other LBD/PDD LO) have any " modeling " or

bluing

> at the joints of the fingers, toes or elbows? My Uncle's hands have been

> getting " bluer " each week and he is asking for oxygen more frequently. Just

wanted

> a comparison.

>

> Thank you so much for your time. Much Peace, Stevie

>

> Stevie in So. California

> LO - Mr. B (Uncle) 82 yrs.

> Lives in my home - 3 yrs.

> DX Parkinson's 1993

> DX LBD 2003 - probably has PDD

> End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have

> started up again.

> Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

> Amitriptyline

> Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the

> same since

> Daily BP usually 68/52

> Severe shoulder pain, hip pain, and shortness of breath.

> Now taking Trilisate Liquid for pain - seems to be working

>

> * * * * * *

>

> I know people have been asking about how long to keep someone on

> meds with LBD

>

> Here is our story:

>

> My dad 81 yrs old has had LBD apx. 7yrs. (not sure when he really

> started)However since last November, he has lost a great deal of

> muscle control and now can no longer walk or get up on his own.. We

> reduced Seroquel at that time(since he is sleeping or has his eyes

> closed most of the time) starting in Nov by reducing one dose for a

> week and seeing results and continuing on. When we reduced the

> final dose Dad " sprung in to action " and amazingly got up and tried

> to attack a patient but was weak enough for the staff to divert. So

> he is on one dose of seroquel. They are now going to try

> eliminating the REMERON (takes it at night to sleep ) We tried

> Exelon about two years ago when he was semi coherent and could still

> get out a sentence or two. We found it worked for a few months after

> reaching maximum dose but soon had no effect so we eliminated it..

> He had been on Reminyl earlier on but it seemed to have no impact

> on him.. His biggest problems came with the hallucinations and the

> panic and anxiety they created for him. He was quite strong and

> quite physical when agitated so the seroquel (given 3x a day with

> an " as needed dose " helped most of the time... But that stage

> eventually passed and he became calmer but less in this world with

> little conversation--mostly gesturing with his eyes..

>

> we are not sure how long this final stage will last because he is so

> healthy otherwise.. But our philosophy has been LESS is MORE and if

> there is no longer a need for something we eliminate it.. We are not

> doing anything if an infection sets in but rather let nature take

> its course because he has no quality of life and we want him to find

> peace.

>

April 7, 2006

my dad was origianlly given levaquin for antibiotic for uti but it gave him

severe diarehhea, then he was given amoxicillin instead. hope this helps

sharon m

From: juperant@...

Date: 2006/04/07 Fri PM 05:30:52 EDT

To: LBDcaregivers

Subject: Re: meds in late stage LBD