Re: Re: June and pain another quick question/Stevie

April 17, 2006

Hello Jan,

I think that message was from a few weeks ago (and it looks like it

" truncated " in the process) but, Mr. B is indeed having the hallies again and I

know it

is not from the medication now. It is definitely from the LBD because I

looked up my notes from when he was on no medication and he had the hallies even

back then but not as bad.

It's almost like he is seeing another " dimension " and casually telling us

about it, because he REALLY DOES see something. Very interesting at this point.

The other day, Mr. B was in the process of getting a shower when I passed by

his bathroom (on the first floor). The door was opened and he was standing

there in his birthday suit, holding on to the walker. I just said, " Hi Cutie, "

and he laughed. When the Caregiver, , brought him to the table after he

was cleaned up, Mr. B emphatically said, " doesn't close the door. " I

told him it was okay because I have (obviously) seen him in his birthday suit

before and he said, " ...That's okay, it's not you....it's the two women standing

on the stairs watching me. " All I could say was, " you gave 'em a treat

didn't you? " and that brought on his famous smile and laugh. We chuckled

through

the whole day on that one!

All I can say now is that life is much easier with the Caregiver. We

actually had COMPANY yesterday! God Bless !

Much Peace to all, 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

UTI since 4/7 not getting any better - took Bactrim

Sleeping most of the day, breathing becoming an issue, asking for oxygen

daily.

* * * * * *

Hi Stevie,

Mr. B is taking the Tilsilate for pain. It may not be

the reason for the hallies coming back. If that is

what you are asking. Hallucinations are a symptom of

LBD naturally. That is why doctors want to take

patients entirely off medications to see if the

hallucinations are caused by LBD or medications to get

a true dx. The hallucinations will be there if he is

not on an antipsychotic like Seroquel to help

alleviate some of the hallucinations. The

hallucinations will come back if he is not on a

medication to help with that. It sounds like Mr. B was

taken off most of the medications, so it is most

likely not from medications in my opinion.

I'm sorry to hear that Mr. B is back to these nasty

hallies......Jan

April 17, 2006

Jan,

Thank you for the kind comment!

Mr. B has been on Bactrim for the past 10 days and still has symptom's of a

UTI...urgency, stinging and pain when URN8Ting....so the Hospice nurse said

today that he will have to have a UA (urine test) on Wednesday to see what is

up.

She also said, after examining him, that his lungs are " diminishing " faster

and that is why he is asking for oxygen at night. He seems very " peaceful "

all of the sudden and looks forward to having his Trilisate medication.

Remember, this is a man that wouldn't even take an aspirin when he was well!)

This

pain med (used for bone pain, mainly for cancer patients) seems to be working

well with/for him. Finally...a medication that he can handle.

Thanks again Jan. 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

UTI since 4/7 not getting any better - took Bactrim

Sleeping most of the day, breathing becoming an issue, asking for oxygen

daily.

* * * * * * * *

Stevie, I am glad that you have found to help

Mr. B. It is like a God send to find a good caregiver.

That is funny about the women on the stairs watching

Mr. B in his birthday suit. LOL

At least our LOs are never lonely, they have so many

people and animals visiting in their world. Sometimes

they are overwhelmed by all the visitors.

How is Mr. B's UTI, is he still fighting it?

It's great that you are now able to have more relief

with there. Keep up the good work. Mr. B is very

fortunate to have you as his niece.

April 17, 2006

Hello and Doris,

You are exactly right about " decreasing " the Trilisate! The Hospice doctor

actually wanted me to INCREASE the dose and I had to be a bit cranky with him

and remind him of what happened to Mr. B at the NH (I still don't think he was

listening because he said, " The'll have to go on Haldol " .......gads, I sure

hope his hearing wasn't impaired when I let out that piercing SCREAM!!!!). I

truly think that whenever there is a problem with an LBD patient, meds need to

be decreased, not increased. We have found this to be the case every time Mr.

B got into LBD " trouble. "

As far as cognitive goes...Mr. B has suddenly gotten on this " peaceful "

thing. I think he is finally letting things " happen " as they may. He converses

quite often to the people he sees and seems content now. He is willingly put to

bed at 7:00 PM where before he would not even think of going to bed before

9:00 PM., even though he slept in his chair during the day. Now his " chair

time " is very few hours per day compared to " bed time. "

Thank you for the hugs from Canada. I will go downstairs and give him his

when he is through with lunch. Much 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

UTI since 4/7 not getting any better - took Bactrim

Sleeping most of the day, breathing becoming an issue, asking for oxygen

daily.

* * * * * * * *

Hi Stevie,

Sorry to hear about Mr. B's increasing hallies. Doris and I had a visit this

morning and

talked about your recent message concerning the continued cognitive decline

you

mentioned. We agreed that you should probably decrease the amount of

Trilisate to see if

it would make a difference, but now you indicate the hallies are not likely

from the

medication. He is so lucky you can see the humour in a given situation and

thankfully he

can get in on the fun too. Another step of your journey I guess. You have

much to

contend with and thank goodness for !

Another hug for you both from Canada.

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

31/2 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, UTI.

>

> Hello Jan,

>

> I think that message was from a few weeks ago (and it looks like it

> " truncated " in the process) but, Mr. B is indeed having the hallies again

and I know it

> is not from the medication now. It is definitely from the LBD because I

> looked up my notes from when he was on no medication and he had the hallies

even

> back then but not as bad.

>

> It's almost like he is seeing another " dimension " and casually telling us

> about it, because he REALLY DOES see something. Very interesting at this

point.

> The other day, Mr. B was in the process of getting a shower when I passed

by

> his bathroom (on the first floor). The door was opened and he was standing

> there in his birthday suit, holding on to the walker. I just said, " Hi

Cutie, "

> and he laughed. When the Caregiver, , brought him to the table after

he

> was cleaned up, Mr. B emphatically said, " doesn't close the door. " I

> told him it was okay because I have (obviously) seen him in his birthday

suit

> before and he said, " ...That's okay, it's not you....it's the two women

standing

> on the stairs watching me. " All I could say was, " you gave 'em a treat

> didn't you? " and that brought on his famous smile and laugh. We chuckled

through

> the whole day on that one!

>

> All I can say now is that life is much easier with the Caregiver. We

> actually had COMPANY yesterday! God Bless !

>

> Much Peace to all, Stevie

April 17, 2006

.....sorry....correction... " Then 'he will' have to go on Haldol " ....

* * * * * * * *

Hello and Doris,

You are exactly right about " decreasing " the Trilisate! The Hospice doctor

actually wanted me to INCREASE the dose and I had to be a bit cranky with him

and remind him of what happened to Mr. B at the NH (I still don't think he

was

listening because he said, " The'll have to go on Haldol " .......gads, I sure

hope his hearing wasn't impaired when I let out that piercing SCREAM!!!!). I

April 17, 2006

Unfortunately that doctor now thinks I'm a b----, so I just tell his nurses

that I have been through hell and back to earn that title so ya better listen

up. LOL ...and " he " has the degree!

* * * * * * * *

You have spent a few days of change with Mr. B's behaviour. So glad it has

reached a state

of more apparent peace.

Your humour has given me a good laugh, reaction to the doctor even thinking

of Haldol

much less suggesting it to you! Now he should remember!!!! Laughing again.

>

> Hello and Doris,

>

> You are exactly right about " decreasing " the Trilisate! The Hospice doctor

> actually wanted me to INCREASE the dose and I had to be a bit cranky with

him

> and remind him of what happened to Mr. B at the NH (I still don't think he

was

> listening because he said, " The'll have to go on Haldol " .......gads, I sure

> hope his hearing wasn't impaired when I let out that piercing SCREAM!!!!).

I

> truly think that whenever there is a problem with an LBD patient, meds need

to

> be decreased, not increased. We have found this to be the case every time

Mr.

> B got into LBD " trouble. "

>

> As far as cognitive goes...Mr. B has suddenly gotten on this " peaceful "

> thing. I think he is finally letting things " happen " as they may. He

converses

> quite often to the people he sees and seems content now. He is willingly

put to

> bed at 7:00 PM where before he would not even think of going to bed before

> 9:00 PM., even though he slept in his chair during the day. Now his " chair

> time " is very few hours per day compared to " bed time. "

>

> Thank you for the hugs from Canada. I will go downstairs and give him his

> when he is through with lunch. Much 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

> UTI since 4/7 not getting any better - took Bactrim

> Sleeping most of the day, breathing becoming an issue, asking for oxygen

> daily.

>

> * * * * * * * *

>

> Hi Stevie,

> Sorry to hear about Mr. B's increasing hallies. Doris and I had a visit

this

> morning and

> talked about your recent message concerning the continued cognitive decline

> you

> mentioned. We agreed that you should probably decrease the amount of

> Trilisate to see if

> it would make a difference, but now you indicate the hallies are not likely

> from the

> medication. He is so lucky you can see the humour in a given situation and

> thankfully he

> can get in on the fun too. Another step of your journey I guess. You have

> much to

> contend with and thank goodness for !

> Another hug for you both from Canada.

>

> , Oakville Ont.

April 17, 2006

Hi Stevie,

Mr. B is taking the Tilsilate for pain. It may not be

the reason for the hallies coming back. If that is

what you are asking. Hallucinations are a symptom of

LBD naturally. That is why doctors want to take

patients entirely off medications to see if the

hallucinations are caused by LBD or medications to get

a true dx. The hallucinations will be there if he is

not on an antipsychotic like Seroquel to help

alleviate some of the hallucinations. The

hallucinations will come back if he is not on a

medication to help with that. It sounds like Mr. B was

taken off most of the medications, so it is most

likely not from medications in my opinion.

I'm sorry to hear that Mr. B is back to these nasty

hallies......Jan

--- juperant@... wrote:

> Hello All,

>

> Okay....here we go again. Mr. B is seeing the pack

> of dogs outside the

> breakfast nook, and birds too, and people in the

> kitchen AND was a bit combative

> with the Caregiver today! Oh oh....now......where

> do we go? He has been taking

> the Trilisiate for two weeks now...very

> willingly...almost TOO willinglly and

> he is starting the bad hallies again and was

> " coma-Lewy " all day today until

> dinner time and just " snapped out of it " !

> Antibiotics can kill the good bacteria that fight

> yeast so yeast infections

> can also occur.

> , Oakville

>

> > > >

> > > > Hello All,

> > > >

> > > > Mr. B has had, as he calls it now, the " BMs "

> for the past two

> > days

> > > and it

> > > > hasn't stopped yet. Hospice thinks it might

> be a tiny bit of

> > flu

> > > going around

> > > > with their patients. He eats a meal and then

> has to go to the

> > > bathroom right

> > > > away (he never makes it though...he's in a

> wheelchair), and by

> > the

> > > next meal he

> > > > is hungry again and eats everything as usual.

>

> > > >

> > > > He has also developed a UTI, and I know I

> have read about them

> > but

> > > it didn't

> > > > stick because he has never had one before.

> Is the diarrhea a

> > side

> > > affect of

> > > > the UTI? And, is Bactrim okay for him to

> take? Is there a

> > > special antibiotic

> > > > to give to LBD's with UTI's? Is there

> something I should be

> > > looking for that

> > > > I forgot about? Probably...but...I do

> remember they get a bit

> > > combative ? and

> > > > hallucinate more? He has started the hallies

> again for the

> > past

> > > few days so

> > > > maybe that is why.

> > > >

> > > > Any fresh advice would be welcome. This is

> the first time and

> > I

> > > don't want

> > > > things to get any worse than they are.

> > > >

> > > > Thank you all in advance for your wonderful

> support! Have a

> > great

> > > evening.

> > > > 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

> > >

>

> [Non-text portions of this message have been

> removed]

>

Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay

Area, California

__________________________________________________

April 17, 2006

Stevie, I am glad that you have found to help

Mr. B. It is like a God send to find a good caregiver.

That is funny about the women on the stairs watching

Mr. B in his birthday suit. LOL

At least our LOs are never lonely, they have so many

people and animals visiting in their world. Sometimes

they are overwhelmed by all the visitors.

How is Mr. B's UTI, is he still fighting it?

It's great that you are now able to have more relief

with there. Keep up the good work. Mr. B is very

fortunate to have you as his niece.

--- juperant@... wrote:

> Hello Jan,

>

> I think that message was from a few weeks ago (and

> it looks like it

> " truncated " in the process) but, Mr. B is indeed

> having the hallies again and I know it

> is not from the medication now. It is definitely

> from the LBD because I

> looked up my notes from when he was on no medication

> and he had the hallies even

> back then but not as bad.

>

> It's almost like he is seeing another " dimension "

> and casually telling us

> about it, because he REALLY DOES see something.

> Very interesting at this point.

> The other day, Mr. B was in the process of getting a

> shower when I passed by

> his bathroom (on the first floor). The door was

> opened and he was standing

> there in his birthday suit, holding on to the

> walker. I just said, " Hi Cutie, "

> and he laughed. When the Caregiver, , brought

> him to the table after he

> was cleaned up, Mr. B emphatically said, "

> doesn't close the door. " I

> told him it was okay because I have (obviously) seen

> him in his birthday suit

> before and he said, " ...That's okay, it's not

> you....it's the two women standing

> on the stairs watching me. " All I could say was,

> " you gave 'em a treat

> didn't you? " and that brought on his famous smile

> and laugh. We chuckled through

> the whole day on that one!

>

> All I can say now is that life is much easier with

> the Caregiver. We

> actually had COMPANY yesterday! God Bless !

>

> Much Peace to all, 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

> UTI since 4/7 not getting any better - took Bactrim

> Sleeping most of the day, breathing becoming an

> issue, asking for oxygen

> daily.

>

> * * * * * *

> Hi Stevie,

> Mr. B is taking the Tilsilate for pain. It may not

> be

> the reason for the hallies coming back. If that is

> what you are asking. Hallucinations are a symptom of

> LBD naturally. That is why doctors want to take

> patients entirely off medications to see if the

> hallucinations are caused by LBD or medications to

> get

> a true dx. The hallucinations will be there if he is

> not on an antipsychotic like Seroquel to help

> alleviate some of the hallucinations. The

> hallucinations will come back if he is not on a

> medication to help with that. It sounds like Mr. B

> was

> taken off most of the medications, so it is most

> likely not from medications in my opinion.

> I'm sorry to hear that Mr. B is back to these nasty

> hallies......Jan

>

> [Non-text portions of this message have been

> removed]

>

Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay

Area, California

__________________________________________________

April 17, 2006

PERFECT! LOLOL

* * * * * *

Stevie,

I was just reading an Arthur C. e book and he wrote that his favorite

definition of an

intellectual is: " Someone who has been educated beyond his/her intelligence. "

I think that

this could also apply to some doctors.

in Dallas

April 17, 2006

Oh dear Stevie, Can you believe the doctor could even

suggest Haldol. OMG! Well, he may have the

degree, but you can give him " The Third Degree! "

--- juperant@... wrote:

> Unfortunately that doctor now thinks I'm a b----, so

> I just tell his nurses

> that I have been through hell and back to earn that

> title so ya better listen

> up. LOL ...and " he " has the degree!

>

> * * * * * * * *

>

> You have spent a few days of change with Mr. B's

> behaviour. So glad it has

> reached a state

> of more apparent peace.

> Your humour has given me a good laugh, reaction to

> the doctor even thinking

> of Haldol

> much less suggesting it to you! Now he should

> remember!!!! Laughing again.

>

> >

> > Hello and Doris,

> >

> > You are exactly right about " decreasing " the

> Trilisate! The Hospice doctor

> > actually wanted me to INCREASE the dose and I had

> to be a bit cranky with

> him

> > and remind him of what happened to Mr. B at the NH

> (I still don't think he

> was

> > listening because he said, " The'll have to go on

> Haldol " .......gads, I sure

> > hope his hearing wasn't impaired when I let out

> that piercing SCREAM!!!!).

> I

> > truly think that whenever there is a problem with

> an LBD patient, meds need

> to

> > be decreased, not increased. We have found this

> to be the case every time

> Mr.

> > B got into LBD " trouble. "

> >

> > As far as cognitive goes...Mr. B has suddenly

> gotten on this " peaceful "

> > thing. I think he is finally letting things

> " happen " as they may. He

> converses

> > quite often to the people he sees and seems

> content now. He is willingly

> put to

> > bed at 7:00 PM where before he would not even

> think of going to bed before

> > 9:00 PM., even though he slept in his chair during

> the day. Now his " chair

> > time " is very few hours per day compared to " bed

> time. "

> >

> > Thank you for the hugs from Canada. I will go

> downstairs and give him his

> > when he is through with lunch. Much 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

> > UTI since 4/7 not getting any better - took

> Bactrim

> > Sleeping most of the day, breathing becoming an

> issue, asking for oxygen

> > daily.

> >

> > * * * * * * * *

> >

> > Hi Stevie,

> > Sorry to hear about Mr. B's increasing hallies.

> Doris and I had a visit

> this

> > morning and

> > talked about your recent message concerning the

> continued cognitive decline

> > you

> > mentioned. We agreed that you should probably

> decrease the amount of

> > Trilisate to see if

> > it would make a difference, but now you indicate

> the hallies are not likely

> > from the

> > medication. He is so lucky you can see the humour

> in a given situation and

> > thankfully he

> > can get in on the fun too. Another step of your

> journey I guess. You have

> > much to

> > contend with and thank goodness for !

> > Another hug for you both from Canada.

> >

> > , Oakville Ont.

>

> [Non-text portions of this message have been

> removed]

>

Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay

Area, California

__________________________________________________

April 18, 2006

Hi Stevie

Why am I not surprised!! These Hospice Doctors cover

so many different disease that they are just trying to

generically cover all diseases with the same meds. My

Hospice doctor did they same thing. The continue to

push the Ativan. In fact, even after I said it was not

a drug I would give my Mom they still prescribed it

and when I went to pick up other meds there it was. I

told the NH that she was allergic to Ativan and

Haldol, so I " HOPE " I will not encounter the same

problems you had when you had Mr. " B " in respite care.

Stevie when my mom when off of her drugs her

hallucinations increased to all day and all night,

instead of mostly evening and night. It was tough for

a couple of weeks, then she settled into her own

little world. She was content, as you say Mr. B is

starting to be. She has so many people around her now

and a few cats, which she hates, but tolerates. When

my Mom began her hallucinations and was living alone

in her home. I would have to go over and ask the

people to go home so my mom could go to bed, otherwise

she would stay up all night with them playing the

hostess role.

Now, she just mutters and I can understand about 1/2

of what she is trying to tell me. Mr. B on the other

hand sounds like a wonderful delightful man to be

around most of the time. He can still smile, which

amazes me. He can understand a joke and has some

really cute humor. He still enjoys eating. So much to

be grateful for. My dear mother has lost all of that.

You will have so many great memories of this time with

Mr. B. I know you have had some awful sleepless nights

etc... too. But he sounds pretty compliant and

cooperative.

May God continue to give you the strength, health and

stamina to continue this journey with Mr. B. He is so

very blessed to have a niece like you. You have done

an excellent job and no one could ever doubt the love

you have for your Uncle.

Dena

Mother (83) Living in NH for one month. Has second UTI

and just went off of Cipro. No longer has a catheter.

Currently not taking any drugs. Has a new Tri Cell air

bed now.

--- juperant@... wrote:

> Hello and Doris,

>

> You are exactly right about " decreasing " the

> Trilisate! The Hospice doctor

> actually wanted me to INCREASE the dose and I had to

> be a bit cranky with him

> and remind him of what happened to Mr. B at the NH

> (I still don't think he was

> listening because he said, " The'll have to go on

> Haldol " .......gads, I sure

> hope his hearing wasn't impaired when I let out that

> piercing SCREAM!!!!). I

> truly think that whenever there is a problem with an

> LBD patient, meds need to

> be decreased, not increased. We have found this to

> be the case every time Mr.

> B got into LBD " trouble. "

>

> As far as cognitive goes...Mr. B has suddenly gotten

> on this " peaceful "

> thing. I think he is finally letting things

> " happen " as they may. He converses

> quite often to the people he sees and seems content

> now. He is willingly put to

> bed at 7:00 PM where before he would not even think

> of going to bed before

> 9:00 PM., even though he slept in his chair during

> the day. Now his " chair

> time " is very few hours per day compared to " bed

> time. "

>

> Thank you for the hugs from Canada. I will go

> downstairs and give him his

> when he is through with lunch. Much 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

> UTI since 4/7 not getting any better - took Bactrim

> Sleeping most of the day, breathing becoming an

> issue, asking for oxygen

> daily.

>

> * * * * * * * *

>

> Hi Stevie,

> Sorry to hear about Mr. B's increasing hallies.

> Doris and I had a visit this

> morning and

> talked about your recent message concerning the

> continued cognitive decline

> you

> mentioned. We agreed that you should probably

> decrease the amount of

> Trilisate to see if

> it would make a difference, but now you indicate the

> hallies are not likely

> from the

> medication. He is so lucky you can see the humour

> in a given situation and

> thankfully he

> can get in on the fun too. Another step of your

> journey I guess. You have

> much to

> contend with and thank goodness for !

> Another hug for you both from Canada.

>

> , Oakville Ont.

>

> Mom 92, 12 1/2 years " Parkinsons "

> 31/2 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, UTI.

>

> >

> > Hello Jan,

> >

> > I think that message was from a few weeks ago (and

> it looks like it

> > " truncated " in the process) but, Mr. B is indeed

> having the hallies again

> and I know it

> > is not from the medication now. It is definitely

> from the LBD because I

> > looked up my notes from when he was on no

> medication and he had the hallies

> even

> > back then but not as bad.

> >

> > It's almost like he is seeing another " dimension "

> and casually telling us

> > about it, because he REALLY DOES see something.

> Very interesting at this

> point.

> > The other day, Mr. B was in the process of getting

> a shower when I passed

> by

> > his bathroom (on the first floor). The door was

> opened and he was standing

> > there in his birthday suit, holding on to the

> walker. I just said, " Hi

> Cutie, "

> > and he laughed. When the Caregiver, ,

> brought him to the table after

> he

> > was cleaned up, Mr. B emphatically said, "

> doesn't close the door. " I

> > told him it was okay because I have (obviously)

> seen him in his birthday

> suit

> > before and he said, " ...That's okay, it's not

> you....it's the two women

> standing

> > on the stairs watching me. " All I could say was,

> " you gave 'em a treat

> > didn't you? " and that brought on his famous smile

> and laugh. We chuckled

> through

> > the whole day on that one!

> >

> > All I can say now is that life is much easier with

> the Caregiver. We

> > actually had COMPANY yesterday! God Bless !

> >

> > Much Peace to all, Stevie

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

April 20, 2006

Hi Stevie,

Sorry this is late, I'm just now getting caught up on my emails, all 200 of

them.

I have been wanting to ask you about something. I went back in the archive's

of this message board and at first you didn't refer to Mr. B as " Mr. B. " it was

just your uncle. How did it come about that you now call him Mr. B. There was

a blurp when someone replied that it was a cute story.

I am glad to hear that the Caregiver is working out. Mr. B sounds just like

my FIL.

Oh I did look at the pics too. He is a sweetie pie just like Dizz.

I hope you don't mind me asking.

Tori

juperant@... wrote: