Re: Back to Eileen

March 20, 2008

Dear Eileen,

Thanks so much for your message. Glad to hear the support group was helpful.

You may have started reading all that paper you've been accumulating - and at

first it is overwhelming. Just getting the diagnosis is exhausting. But while

this is a terrible disease, there is a lot to be done for the symptoms over a

long period of time.

My mom also got a PD diagnosis first - although it was quite obvious there was

dementia, too. Please be aware the doctors who study this say there certainly

can be: PD without dementia; LBD with PD (what my mom has); LBD with

" parkinsonism " (meaning the movement problems are caused by the LBD itself), and

so on. It appears at least 30% of people with PD later develop dementia, which

many docs believe is LBD. It does seem complicated. The vital part for we

caregivers - and the doctors! - is to understand that meds

given for other kinds of dementia are often harmful for those with LBD. So as

soon as possible, do begin reading.

PD meds are for the movement disorders - they cannot help the cognition and

memory issues that are key problems in LBD. The 3 meds found useful for the

dementia itself are Exelon, Razadyne and Aricept. My mom was helped with a

combination of PD and LBD meds - each treats separate parts of the problem. She

also takes Seroquel, one of the " atypical antipsychotics " given if needed for

agitation, extreme restlessness, hallucinations, combativeness, etc. Over time,

we have had to discontinue Requip for the PD (increased agitation and

hallucinations) and decrease Sinemet.

Some people with LBD and symptoms of PD are helped with the PD meds, but

again, meds for the LBD are also needed.

So good luck with your reading. Dr. Boeve - one the recognized LBD experts -

is at Mayo. Reading his articles were a turning point for me in learning how to

help my mom.

Please keep us posted as you have time.

Peace,

Lin

freetoclean1 wrote:

Hi, Lin,

Yes, I just came from the support group and found it very helpful.

One thing that was said that I found interesting was that usually a

person is misdiagnosed as having PD but really has LBD, that they

don't have both. That is why the PD meds do not work. They gave me a

name of a doctor here in St. that specializes in LBD. I plan on

making an appointment soon with this doctor. Mother's neurologist is

treating her for the PD and not LBD. In fact, I'm not sure if she

even knows about LBD. It sounds like there are very few doctors who

do know about LBD.

I was given a name of a Senior Living place with a Memory Care Unit

tonight and was advised to be sure that they know about LBD and how

to handle it. I will first make an appointment with the above

mentioned doctor to get a diagnosis as it has not been officially

given. Right now Mother is not on any LBD meds: Razadyne, Aricept,

Exelon.

I have gone to some of the links that sent and have printed

them out but have not had a chance to read them yet. I received the

following handouts tonight at the support group.

This one is from Mayo Clinic: http://www.mayoclinic.com/health/lewy-

body-dementia/DS00795/DSECTION=1

The second handout is from EMedicine which is part of Web MD:

http://www.emedicine.com/neuro/topic91.htm#top

There is a lot of information to read, almost overwhelming. I am so

thankful for this group and hopefully I am on the way to help Mother

live a better life than what she is living now. Thank you for the

welcome of open arms and open hearts. That is very comforting.

Blessings,

Eileen in MN

>

> Hi, Eillen -

> By the time you read this, you may have been at the support

group - hope it was helpful.

>

> I've written a lot here lately about my own mom, 80 YO with PD

and LBD. If you've seen recent posts you know that PD meds and many

other kinds of drugs can be very dangerous to our loved ones. My

mom's hallucinations, delusions, etc. got much worse on PD meds.

Experts say people with LBD are very sensitive to meds that other

folks can handle. Bladder control meds - and many others - are among

the bad news, so you were smart to stop those.

>

> You may not be able to determine the best placement for your mom

until she is stabilized on the proper medications. Only then can you

determine what her real " baseline " is. While hallucinations,

delusions, confusion, ADL problems, etc. are all part of LBD, they

can generally be managed for quite a while with appropriate meds.

They can also be made much worse by the wrong meds, incorrect

dosages, or not giving meds they should have.

>

> Is your mom on one of the 3 meds most recommended for LBD:

Razadyne, Aricept, Exelon? These are among the standard protocol

that LBD experts use. It is also rather common for LBD experts to

also an " atypical antipsychotic " (never a " typical!) as well. My mom

was on Seroquel originally so we could keep her on Sinemet, which,

as I said, increased her hallucinations, delusions, agitation, etc.

Not always, but sometimes the PD meds just can't be tolerated, or

can only be tolerated in smaller quantities.

>

> If you haven't yet had a chance, please read the treatment

articles by Dr. Boeve - a nationally recognized expert - at the Lewy

Body Dementia Association website. Perhaps someone has already given

you direct links there and to the material she has compiled for us

on this topic. Dr. Boeve describes the most common methods of

managing all the LBD symptoms and behaviors. Other links describe

the drugs found to be potentially harmful. Many of us print out Dr.

Boeve's and other articles and ask our MDs to read and follow the

protocols.

>

> You are certainly welcomed here with open arms and open hearts.

It's the best place around for learning, sharing and comfort.

>

> Take care,

> Lin

>

> P.S. I wondered about the meaning of " free to clean ! " that

shows up prior to your e-mail address.

>

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

Welcome to LBDcaregivers.

March 20, 2008

Hi, Lin,

Thanks again for all your good information. I did call and make an

appointment with the doctor whose name I was given from the local

support group but can't get my Mother in until April 16. It was nice

to hear the woman who made the appointment say that the doctor

spends a lot of time with each of his new patients. The doctor is a

board certified geriatrician, internist practicing in St. . It

is hard to get an appointment with Mayo Clinic and I just don't

think my Mother could make the trip. It would be too much for her.

In the meantime the AL staff where my Mother lives told me today

that she has become more tired, confused, agitated, and incontinent

in the last week. Just this morning my Mother pulled her cord 9

times asking when her family was coming. I'm the only one who comes

to visit her on Thursday and did not tell her that I was bringing

her sister with me today in case it didn't work out. My Mother and

aunt had a nice visit talking about when they were younger and about

relatives while I discussed a lot of concerns with the director. By

the time Mother went to supper, she was standing more upright and

not as stooped. Even the staff noticed and made a comment. My Mother

can hold a good conversation and remembers what people tell her but

to do her every day activities she has a difficult time with those.

I told the director about the upcoming doctor's appointment and said

that at some point I may have to move Mother to a memory care unit.

She again told me that Mother is welcome to stay there. They go in

every 30 minutes to check on her and that there are residents there

who need more care than Mother does. Last Sunday Mother mentioned

that she weighed 113. She has lost 3 pounds since the week before

and 8 pounds since January. They faxed the doctor and got an order

to give her Ensure during the day, 1/2 bottle in the morning and 1/2

bottle at supper. I just feel Mother is not getting the calories she

needs and not eating enough. She has also been constipated. I did

order Fruit-Eze for her this week but have not received it yet. They

did give her a stool softener (Colace) on Monday with very little

results. The director is concerned because it may cause bowel

obstruction. I also gave the director a copy of the stages of

Parkinson's and the phases of LBD.

Until we see the new doctor, I don't plan on having the neurologist

or her regular doctor make any more adjustments to her medications.

These are the meds she is currently taking:

Carvedilol 25 mg, one tablet twice a day (heart - angina)

Fosamax 70 mg, once a week (osteoporosis)

Effexor XR 75 mg, once a day (anti-depressant)

Synthroid 0.1 mg, once a day (thyroid)

Stalevo 100, one tablet three times a day (Parkinson's)

Neupro 2 mg, patch changed every 24 hours (Parkinson's)

Furosemide 40 mg, once a day (diuretic)

Xanax .25 mg, taken as needed (anxiety)

Pain reliever 500 mg, two tablets three times a day (osteoarthritis)

Calcium 600 + D, one tablet twice a day (osteoporosis)

Senior vitamins, one tablet a day

In February 2008, the neurogolist increased the Effexor another 37.5

mg because Mother said she felt more depressed and increased her

Stalevo to 150 to help with her mobility but once again she become

more confused so was decreased back to the amount above.

From reading the information given from this group, I now know that

Xanax should not be taken by someone with LBD so I told the director

not to give it to her any more. They have only given it to her once

and that was a while ago.

Before she was switched to Stalevo and Neupro in mid-October 2007,

she was on:

Sinemet 25/100 mg, 2 tablets four times a day

Sinemet 25/100 mg, 1/2 tablet twice a day

Sinemet 50/200 mg, 1 tablet at bedtime

Mirapex 0.125 mg, 1 tablet four times a day

To me she seemed overmedicated but trusted that the neurologist knew

what she was doing. The 1/2 tablet of Sinemet was added when my

Mother said she didn't feel good in the morning. Looking back now it

was probably because she was overmedicated! She was taken off these

meds because she was becoming very confused and hallucinating. The

neurologist's explanation was that at some point the PD meds don't

work any more.

Mother was started on Seroquel 25 mg once a day at bedtime and then

the same dose added in the morning in October 2007 and I felt it was

not doing anything so it was discontinued completely about a month

later. Then at the end of November 2007 she was put on Zyprexa 5 mg

at bedtime. Just last week I asked to have it discontinued. This

week her symptoms seemed to have worsened.

This has been a busy week and have not had a chance to read

everything yet. I'm trying to get my Mother's tax information

together, having Easter here so that means cleaning and making up a

menu, etc., etc. It just gets to be too overwhelming sometimes. My

Mother will be with us for Easter so will see how she holds up since

she seems to be more tired lately.

My sister from N. Carolina is coming for 10 days. She already has

Mother on her death bed and near death. In fact she forwarded

information from a hospice Web site tonight on what a person

experiences when dying. Mother is not at that point yet and may not

be for months. I'm just trying to help Mother where she is right now

and I feel I will know or people working with Mother will tell me

when it is time to have hospice come in.

I will feel so much better when a LBD diagnosis is made and Mother

is put on the right meds.

Blessings,

Eileen in MN

P.S. HAPPY EASTER TO ALL!!!

> >

> > Hi, Eillen -

> > By the time you read this, you may have been at the support

> group - hope it was helpful.

> >

> > I've written a lot here lately about my own mom, 80 YO with PD

> and LBD. If you've seen recent posts you know that PD meds and

many

> other kinds of drugs can be very dangerous to our loved ones. My

> mom's hallucinations, delusions, etc. got much worse on PD meds.

> Experts say people with LBD are very sensitive to meds that other

> folks can handle. Bladder control meds - and many others - are

among

> the bad news, so you were smart to stop those.

> >

> > You may not be able to determine the best placement for your mom

> until she is stabilized on the proper medications. Only then can

you

> determine what her real " baseline " is. While hallucinations,

> delusions, confusion, ADL problems, etc. are all part of LBD, they

> can generally be managed for quite a while with appropriate meds.

> They can also be made much worse by the wrong meds, incorrect

> dosages, or not giving meds they should have.

> >

> > Is your mom on one of the 3 meds most recommended for LBD:

> Razadyne, Aricept, Exelon? These are among the standard protocol

> that LBD experts use. It is also rather common for LBD experts to

> also an " atypical antipsychotic " (never a " typical!) as well. My

mom

> was on Seroquel originally so we could keep her on Sinemet, which,

> as I said, increased her hallucinations, delusions, agitation,

etc.

> Not always, but sometimes the PD meds just can't be tolerated, or

> can only be tolerated in smaller quantities.

> >

> > If you haven't yet had a chance, please read the treatment

> articles by Dr. Boeve - a nationally recognized expert - at the

Lewy

> Body Dementia Association website. Perhaps someone has already

given

> you direct links there and to the material she has compiled for us

> on this topic. Dr. Boeve describes the most common methods of

> managing all the LBD symptoms and behaviors. Other links describe

> the drugs found to be potentially harmful. Many of us print out

Dr.

> Boeve's and other articles and ask our MDs to read and follow the

> protocols.

> >

> > You are certainly welcomed here with open arms and open hearts.

> It's the best place around for learning, sharing and comfort.

> >

> > Take care,

> > Lin

> >

>

March 21, 2008

In my opinion, your sister is preparing herself for the worst, and then anything

else is a blessing. In ten days of visiting she will hopefully have a clearer

picture of your mom's status on the rollercoaster.

If you hook her up with this group then you will never feel as open to being

as honest as you would like to be. As much as I wanted my family to be more

educated, I now realize that by them not tapping into this lifeline allowed me

to be totaaly honest on meltdown days.

If she is really interested and you have a feeling she would benefit, then

have at it, but otherwise, I am glad the boys were not interested enough to

figure out how to join.

My brother-in-law was amazed at the response I got after Millie threw a clot

and needed heavy-duty pain meds. Within minutes people were okay with the

morphine at the very final phase. The post that said morphine at that point was

the " angel of mercy " made us relax and let hospice use their heaviest arnsenal

to help Millie remain pain-free and non-agitated for her final leg of the

journey.

She must have enjoyed it, too, because she lasted almost 12 hours after we

said our final good-byes and we knew she was not going to leave this earth with

us watching her breathe.

I always start one place in a post and end up somewhere else, but that is what

writing has always done for me.

Love,

Carol

Best to you,

Carol

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

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

March 21, 2008

Carol,

I also thought that I'd rather not have my siblings be a part of

this group because I know I wouldn't be able to say what I wanted. I

did mention there was a Yahoo group for LBD caregivers when I first

sent them info on LBD but since they don't see Mother on a regular

basis, they probably wouldn't understand everything that was being

said. It's entirely different to be in constant contact with a LO

who is experiencing LBD than living out of state and trying to

picture in your mind what is going on.

Thanks for giving me a different perspective about my sister. She

did come at Christmas time to visit Mother. Just in the last couple

weeks Mother has experienced more of the LBD. On the positive side,

my Mother perks up when a friend or family member stops to see her.

She gets refocused. Mother does that with me, too. When she gets

agitated during the day, I have the staff call me so she can talk to

me. It seems to calm her down.

My sister did live close to me but in the middle of getting Mother

ready to move to AL in July 2006 she decided to move out of state

and was busy taking care of her own things. That left me to move

Mother, have a moving sale, clean the house, put it up for sale,

work with the realtors, etc. She has always been one to leave when

things get uncomfortable. I don't know if she couldn't handle my

Mother moving from the house we grew up in or what. Whenever she

moves, she thinks she will leave her problems behind but they always

follow her.

My Mother was mentally sharp and a hard worker all her life. She

often says that there's something wrong with her brain and is there

some place to fix my brain. LBD is such an awful disease!!!!

My condolences on the death of your Mother.

Blessings,

Eileen in MN

>

> In my opinion, your sister is preparing herself for the worst, and

then anything else is a blessing. In ten days of visiting she will

hopefully have a clearer picture of your mom's status on the

rollercoaster.

>

> If you hook her up with this group then you will never feel as

open to being as honest as you would like to be. As much as I

wanted my family to be more educated, I now realize that by them not

tapping into this lifeline allowed me to be totaaly honest on

meltdown days.

>

> If she is really interested and you have a feeling she would

benefit, then have at it, but otherwise, I am glad the boys were not

interested enough to figure out how to join.

>

> My brother-in-law was amazed at the response I got after Millie

threw a clot and needed heavy-duty pain meds. Within minutes people

were okay with the morphine at the very final phase. The post that

said morphine at that point was the " angel of mercy " made us relax

and let hospice use their heaviest arnsenal to help Millie remain

pain-free and non-agitated for her final leg of the journey.

>

> She must have enjoyed it, too, because she lasted almost 12

hours after we said our final good-byes and we knew she was not

going to leave this earth with us watching her breathe.

>

> I always start one place in a post and end up somewhere else,

but that is what writing has always done for me.

>

> Love,

>

> Carol

>

> Best to you,

>

> Carol

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with Yahoo!

Mobile. Try it now.

>

March 21, 2008

Dear Eileen,

If it's more comfortable not to have your sister at this site - and that's

understandable - she still might benefit from discussions of LBD. You could

refer her to the LBD forum maintained at the Lewy Body Dementia Association web

site. I visit there sometimes, and posts are quite helpful. It appears there is

some overlap between here and there of people posting, but it mostly appears to

be a different group of folks. And of course you would simply not " go there " to

post yourself on any personal topic.

Have a peaceful week-end.