Re: Quick question re: Meds

March 30, 2006

Oh Stevie,

I am sorry I can't help with your meds advice, except to say at this stage of

his journey,

Me. B. should be taking whatever will steady the ride. Not sure what that

should be. How

sweet and trusting of him to put the decision to us. Alleviates the burden for

you to a

degree.

I've been wondering how you and he are doing. Sorry to hear of his discomfort.

I

hope you are holding up and keeping healthy. He's a strong man and you need to

hold in

there for him.

Many loving thoughts from Canada

, 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. NH.

Eltroxin, Tylenol twice a day.

>

> Hello All.....I have a quick question concerning meds. Mr. B was just

> reassessed by Hospice because he wouldn't take any meds at all even though he

is

> still in pain because of the severe reactions to the meds. So, Hospice has

given

> him two different Rx's to try for pain and shortness of breath. The first

> one is Trilisate Liquid - 500 MG/5ML, and the second one is a substitute for

> Morphine; Oxyfast Concentrate 20 MG/ML. Mr. B is willing to take these meds

but

> ONLY with your approval! : )

>

> I thank you all in advance for any information concerning LBD patients and

> these medications.

>

> Much Peace to All on this fine evening, 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.

>

March 31, 2006

Hello Sharon....Thank you for your encouragement. So far so good. I gave

him a dose of the Trilisate Liquid and the pain has subsided and the puppies

have not returned as of yet! He said he is " comfortable " even though it makes

him a bit weaker (I told him it made him more relaxed), and he is willing to

continue with the medication. Maybe we found another drug that LBDers can take?

That would be nice!

Much love, prayers and so much Peace sent 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

* * * * * * * *

i have never heard about these meds with lbd, but i think i would recommend

trying it to see if it helps him, most of the time one dose is enough to tell

if it is a negative effect. i would rather see him comfortable then miserable,

my personal opinion only tho hugs sharon m

From: juperant@...

Date: 2006/03/30 Thu PM 09:50:25 EST

To: LBDcaregivers

Subject: Quick question re: Meds

Hello All.....I have a quick question concerning meds. Mr. B was just

reassessed by Hospice because he wouldn't take any meds at all even though he

is

still in pain because of the severe reactions to the meds. So, Hospice has

given

him two different Rx's to try for pain and shortness of breath. The first

one is Trilisate Liquid - 500 MG/5ML, and the second one is a substitute for

Morphine; Oxyfast Concentrate 20 MG/ML. Mr. B is willing to take these meds

but

ONLY with your approval! : )

I thank you all in advance for any information concerning LBD patients and

these medications.

Much Peace to All on this fine evening, 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.

March 31, 2006

i have never heard about these meds with lbd, but i think i would recommend

trying it to see if it helps him, most of the time one dose is enough to tell if

it is a negative effect. i would rather see him comfortable then miserable, my

personal opinion only tho hugs sharon m

From: juperant@...

Date: 2006/03/30 Thu PM 09:50:25 EST

To: LBDcaregivers

Subject: Quick question re: Meds

Hello All.....I have a quick question concerning meds. Mr. B was just

reassessed by Hospice because he wouldn't take any meds at all even though he is

still in pain because of the severe reactions to the meds. So, Hospice has

given

him two different Rx's to try for pain and shortness of breath. The first

one is Trilisate Liquid - 500 MG/5ML, and the second one is a substitute for

Morphine; Oxyfast Concentrate 20 MG/ML. Mr. B is willing to take these meds but

ONLY with your approval! : )

I thank you all in advance for any information concerning LBD patients and

these medications.

Much Peace to All on this fine evening, 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.

March 31, 2006

Please give Mr. B my love and continued caring thoughts during this journey.

After visiting

Mom today, now 6 weeks off Aricept and seeing how low she is, she is now

approaching

his stage of life. Not eating much, needs encouragement to drink, hardly

communicative.

They are fairly parallel in timeline.

She came back to us a bit for 3 short weeks, 1 of which I was ill with flu and

missed, but

now I fear there are no more tricks up the proverbial sleeve. I felt that after

taking her off

her antidepressant, a slight rally, and here we are again. Oh my. How

difficult this is.

I am so happy for you that you found the caregiver you have introduced us to.

Yes, what a

godsend he is. What an incredible relief. As you put more trust into him

please do make

more time for you and your husband. Life must go on and you need to remain

healthy.

Putting off the dentist is so easy to do, I've done it with caregiving needs

imminent. Then

the need for dental attention is more dire. Been there, as well as with medical

neglect.

The flu really seems to hit as enforced rest.

Thank you for your kind words. We are in this together.

Know that we care about you and Mr. B so keep us updated.

, 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.

> >

> > Hello All.....I have a quick question concerning meds. Mr. B was just

> > reassessed by Hospice because he wouldn't take any meds at all even though

> he is

> > still in pain because of the severe reactions to the meds. So, Hospice has

> given

> > him two different Rx's to try for pain and shortness of breath. The first

> > one is Trilisate Liquid - 500 MG/5ML, and the second one is a substitute

> for

> > Morphine; Oxyfast Concentrate 20 MG/ML. Mr. B is willing to take these meds

> but

> > ONLY with your approval! : )

> >

> > I thank you all in advance for any information concerning LBD patients and

> > these medications.

> >

> > Much Peace to All on this fine evening, 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.

> >

>

March 31, 2006

another possible good medicine all right i would love to have more on the good

list, more on that list than the bad one like now. tell him hi and give

yourself a hug, sharon m

From: juperant@...

Date: 2006/03/31 Fri PM 09:44:28 EST

To: LBDcaregivers

Subject: Re: Quick question re: Meds

Hello Sharon....Thank you for your encouragement. So far so good. I gave

him a dose of the Trilisate Liquid and the pain has subsided and the puppies

have not returned as of yet! He said he is " comfortable " even though it makes

him a bit weaker (I told him it made him more relaxed), and he is willing to

continue with the medication. Maybe we found another drug that LBDers can take?

That would be nice!

Much love, prayers and so much Peace sent 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

* * * * * * * *

i have never heard about these meds with lbd, but i think i would recommend

trying it to see if it helps him, most of the time one dose is enough to tell

if it is a negative effect. i would rather see him comfortable then miserable,

my personal opinion only tho hugs sharon m

From: juperant@...

Date: 2006/03/30 Thu PM 09:50:25 EST

To: LBDcaregivers

Subject: Quick question re: Meds

Hello All.....I have a quick question concerning meds. Mr. B was just

reassessed by Hospice because he wouldn't take any meds at all even though he

is

still in pain because of the severe reactions to the meds. So, Hospice has

given

him two different Rx's to try for pain and shortness of breath. The first

one is Trilisate Liquid - 500 MG/5ML, and the second one is a substitute for

Morphine; Oxyfast Concentrate 20 MG/ML. Mr. B is willing to take these meds

but

ONLY with your approval! : )

I thank you all in advance for any information concerning LBD patients and

these medications.

Much Peace to All on this fine evening, 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.

April 1, 2006

Stevie,

I have been so busy these last few days, but read your message and wanted to

respond. It is amazing that your Uncle is clear enough to know that he

probably can trust this message Board quicker than the Medicinal people. I had

to smile through that.

One of the other things I did with Mom when she reacted badly to meds, is I gave

her a smaller dose than they recommended. I would use half as much. Then it

can sometimes be tolerated. I really don't think the Medical field gets that a

small dose for most people is a huge dose for the people we need to give meds.

Even on the DVD, the MD says " Start low, and go slow. " I think he gets it if he

knows what low is to our people.

Glad Mr. B trusts our messages.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

Re: Quick question re: Meds

April 1, 2006

Hello Donna,

After three doses with this new medication he is " pain free " and still doing

fine. We did start him off with a very low dose and will continue to do so

until it is visually clear that he needs more, and he can handle a larger dose.

As I said in an earlier message, he is a bit more " relaxed " and more willing

to take a nap and is still asking to use this medication. If you remember my

earlier posts, Mr. B is " afraid " to pass and does not want to " let go. " It is

hard to watch a person struggle so to " hold on. " I think this medication

will help the pain he " doesn't tell us about " and will calm him enough to be

comfortable now and let things happen as they may.

Ever since I found this message board several months ago, I have conversed

with Mr. B about what " others " have been going through with this disease and he

still asks me how " they " are doing. We have always been open and honest about

what goes on in life and I tell him everything except the news about those

who have passed as to not get him any more depressed than natural (there's that

little white lie that is necessary).

I have also told him about " Chip Gerber " and Mr. B commented that he was a

" brave Soul " to be able to communicate his feelings to others and because of

that he has decided to " donate " his brain for research (I am looking into the

process). We are trying to turn this nightmare into a " lesson for others " so my

Uncle will not go through this in vain.

Mr. B has been a " giver " his whole life, helping anyone that needed a nudge

and he has been happier knowing that he is " helping " to pave the road for those

who will take this journey. It is hard for Mr. B to communicate, he is

inaudible at times and just says one word or grunts a note or two. His

sentences

sound like garbling but I manage to find out what he is saying with a lot of

patience. Sometimes he manages a " clear " word or two but that is getting rare.

He is unable to do much else these days except weakly shake a visitors hand

(he is and always was a perfect gentleman)! The only thing he has left is the

hope that he is doing something " good " for others by going through this

illness. I give him that.

Thank you so much for responding when you are so busy. When I tell Mr. B

about the " responses " he feels, even more, that he is " helping.'

Much Peace sent to you and yours, 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 been so busy these last few days, but read your message and wanted to

respond. It is amazing that your Uncle is clear enough to know that he

probably can trust this message Board quicker than the Medicinal people. I had

to

smile through that.

One of the other things I did with Mom when she reacted badly to meds, is I

gave her a smaller dose than they recommended. I would use half as much. Then

it can sometimes be tolerated. I really don't think the Medical field gets

that a small dose for most people is a huge dose for the people we need to give

meds. Even on the DVD, the MD says " Start low, and go slow. " I think he

gets it if he knows what low is to our people.

Glad Mr. B trusts our messages.

Donna R

April 1, 2006

Hello ,

I thought I would add Mr. B's sailor picture because that is how I want to

remember him. He LOVED his sailor days, and felt very fortunate to have been

able to travel around the world.

I am trying to get a hold of a University that is studying LBD and will be

able to use the info in his brain : ) ...little pun there... There was a

post from one of our members a few days ago (re: Dr. Lieberman's newsletter)

that

referred to a Doctor at California State at Irvine, which is just up the road

from where I live, so I am trying to contact him.

Thank you again . I send wonderful Peace and strength for you and

your Mother, 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.

* * * * * * * * * * * * *

Hi Stevie

Your posts are always so informative and encouraging. I am relieved

that Mr. B is pain free. It is also very apparent that Mr. B is

a " giver " - with his caring about the 'others' on the board. You and

he are lucky to have each other. And that he wants to 'donate' his

brain for research is wonderful. I have a book that talks about

donating your brain to research, but someone is borrowing it, but as

I recall it says to contact a university and they will provide you

with forms to fill out - I know Harvard has a " Brain Bank " . I'd also

like to thank you for including the picture of Mr. B from his sailor

days - I love old photos - he is such a handsome man. Thank you again

for your posts.

>

> Hello Donna,

>

> After three doses with this new medication he is " pain free " and

still doing

> fine. We did start him off with a very low dose and will continue

to do so

> until it is visually clear that he needs more, and he can handle a

larger dose.

> As I said in an earlier message, he is a bit more " relaxed " and

more willing

> to take a nap and is still asking to use this medication. If you

remember my

> earlier posts, Mr. B is " afraid " to pass and does not want to " let

go. " It is

> hard to watch a person struggle so to " hold on. " I think this

medication

> will help the pain he " doesn't tell us about " and will calm him

enough to be

> comfortable now and let things happen as they may.

>

> Ever since I found this message board several months ago, I have

conversed

> with Mr. B about what " others " have been going through with this

disease and he

> still asks me how " they " are doing. We have always been open and

honest about

> what goes on in life and I tell him everything except the news

about those

> who have passed as to not get him any more depressed than natural

(there's that

> little white lie that is necessary).

>

> I have also told him about " Chip Gerber " and Mr. B commented that

he was a

> " brave Soul " to be able to communicate his feelings to others and

because of

> that he has decided to " donate " his brain for research (I am

looking into the

> process). We are trying to turn this nightmare into a " lesson for

others " so my

> Uncle will not go through this in vain.

>

> Mr. B has been a " giver " his whole life, helping anyone that needed

a nudge

> and he has been happier knowing that he is " helping " to pave the

road for those

> who will take this journey. It is hard for Mr. B to communicate,

he is

> inaudible at times and just says one word or grunts a note or two.

His sentences

> sound like garbling but I manage to find out what he is saying with

a lot of

> patience. Sometimes he manages a " clear " word or two but that is

getting rare.

> He is unable to do much else these days except weakly shake a

visitors hand

> (he is and always was a perfect gentleman)! The only thing he has

left is the

> hope that he is doing something " good " for others by going through

this

> illness. I give him that.

>

> Thank you so much for responding when you are so busy. When I tell

Mr. B

> about the " responses " he feels, even more, that he is " helping.'

>

> Much Peace sent to you and yours, 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 been so busy these last few days, but read your message and

wanted to

> respond. It is amazing that your Uncle is clear enough to know

that he

> probably can trust this message Board quicker than the Medicinal

people. I had to

> smile through that.

>

> One of the other things I did with Mom when she reacted badly to

meds, is I

> gave her a smaller dose than they recommended. I would use half as

much. Then

> it can sometimes be tolerated. I really don't think the Medical

field gets

> that a small dose for most people is a huge dose for the people we

need to give

> meds. Even on the DVD, the MD says " Start low, and go slow. " I

think he

> gets it if he knows what low is to our people.

>

> Glad Mr. B trusts our messages.

>

> Donna R

April 1, 2006