Introduction

[Guest guest]

Welcome, Debby;

First, are you testing your blood sugars? That's the most important.

If you have a doctor like the 1st one I had, 250 just because you stay

there all the time is NOT OK.

Welcome aboard. Please ask all the questions you wish, even if

you wonder if it's " old " to us, we want to help. Diabetes is NOT a

one-fits-all disease so testing is the most important for each of us.

-list owner

[Guest guest]

Debby, a short term way to see how you are doing is the morning fasting

sugar, under 100 it says you did well the previous day. The lower your

standards the better your control.

A longer term test is the fructosamine test which reviews the prior 2-3

weeks, and the HbA1c glycated hemoglobin that looks back 2-3 months.

They measure glucose sstuck to your blood cells.

Starch is the major source of blood sugar, as they are long chains of

molecules of glucose. I have to quit wheat products, and limit rice corn

and potato. Sam

[Guest guest]

Bill

Welcome to the group. Just a quick note as I have to go out soon.

You seem to have overcome lots of difficulties.

Erectile dysfunction takes some time to overcome (a few months plus) and of course those who couldn't have nerve sparing have long term difficulties.

There is a UK website that I will dig out for you later and there will be suggestions of various means to help including viagra, Caverjet injections and the pump. The choice will depend on effectiveness (viagra didn't work for me) and how the individual feels about the method. There are theories that it is better to induce growth to maintain the blood vessels, but I certainly wouldn'[t have considered this in my bruised state for the first few months.

Glad to have you on board, others may add more to this.

-----Original Message-----From: hraltney Sent: 30 November 2003 02:04To: ProstateCancerSupport Subject: Introduction

Hello to all group members,

I'm new to the group and have never participated in any type of e-mail or chat group so am kind of feeling my way around here. By way of introduction, I'm a 60 year-old, divorced (I was going to say "male", but I guess that would be redundant under the circumstances). I underwent a radical prostatectomy on Oct. 21st and was doing fine until Nov. 3rd when I awoke with a Deep Vein Thrombosis in my left leg. I was re-admitted to the hospital and, in spite of everyone's best efforts, I developed a pulmonary embolism in my left lung. I'm only boring you all with these details because, in my case, the complications have been more difficult to deal with than the original prostate surgery. At any rate, in spite of these setbacks, I'm doing very well but have a few questions for the veterans in the group. According to my surgeon, he was able to accomplish nerve-sparing surgery. This seems supported by the fact that I have experienced little or no problems with incontinence since my catheter was removed. I just tuck a folded up facial tissue in my skivvies in the morning and it's usually dry when I go to bed in the evening unless I forget to compensate when I sneeze or cough. However...., my penis seems to have shrunk...! I realize that this is the least of my worries at this point and I was prepared for the fact that I would probably experience erectile dysfunction, but I'm just wondering if it's my imagination or has anyone else experienced this. Also, for those who have had nerve-sparing surgery, were you ultimately able to get an erection? How long did it take after your surgery to recover function, etc?

If this has been covered in previous postings, I apologize, since I haven't taken the time to review the archives. I guess I've probably said more than enough for my original posting so I'll close here. I would appreciate the comments of those of you who've traveled this road already, and I'll be more than happy to provide whatever support I can to others based on my experiences.

Bill

[Guest guest]

On a site somewhere else I think I read that RP takes the internal

penis in by 2 "

Buddy just get better and survive and worry less about your penis. I

had diabetes before PCa so I got used to it.

> Hello to all group members,

>

> I'm new to the group and have never participated in any type of

e-mail or chat group so am kind of feeling my way around here. By way

of introduction, I'm a 60 year-old, divorced (I was going to say

" male " , but I guess that would be redundant under the circumstances).

I underwent a radical prostatectomy on Oct. 21st and was doing fine

until Nov. 3rd when I awoke with a Deep Vein Thrombosis in my left

leg. I was re-admitted to the hospital and, in spite of everyone's

best efforts, I developed a pulmonary embolism in my left lung. I'm

only boring you all with these details because, in my case, the

complications have been more difficult to deal with than the original

prostate surgery. At any rate, in spite of these setbacks, I'm doing

very well but have a few questions for the veterans in the group.

According to my surgeon, he was able to accomplish nerve-sparing

surgery. This seems supported by the fact that I have experienced

little or no problems with incontinence since my

> catheter was removed. I just tuck a folded up facial tissue in my

skivvies in the morning and it's usually dry when I go to bed in the

evening unless I forget to compensate when I sneeze or cough.

However...., my penis seems to have shrunk...! I realize that this is

the least of my worries at this point and I was prepared for the fact

that I would probably experience erectile dysfunction, but I'm just

wondering if it's my imagination or has anyone else experienced this.

Also, for those who have had nerve-sparing surgery, were you

ultimately able to get an erection? How long did it take after your

surgery to recover function, etc?

>

> If this has been covered in previous postings, I apologize, since I

haven't taken the time to review the archives. I guess I've probably

said more than enough for my original posting so I'll close here. I

would appreciate the comments of those of you who've traveled this

road already, and I'll be more than happy to provide whatever support

I can to others based on my experiences.

>

> Bill

[Guest guest]

Graves Disease is a hyperactive thyroid with an autoimmune disorder.

The hyperactive thyroid is treatable by killing or destroying the

function of the thyroid gland by administering radioactive iodine.

The thyroid uses iodine to stimulate hormone production. Anyway, the

thyroid part of Graves is treatable, but the autoimmune problem is

not. I had the radioactive iodine treatment in 1998 to kill my

thyroid and am now taking a synthetic thyroid hormone replacement

daily. As far as the autoimmune part, well I get ill easier than

most people but I don't know if that is due to the Graves or my

other " problems " (dilated cardiomyopathy <enlarged weak heart> and

congestive heart failure). So I am confused as to what symptoms I

experience are attributed to what condition I have????? lol...For

the longest time the doctors thought that the episodes I was having

that affected my speech, concentration, memory, and caused weakness

and tingling on my left side was due to what is called transient

ischemic attacks <mini strokes>. But tests and so forth always

showed no damage that would be inherent to TIA's. Only since I have

been treated by this new neurologist have I been told that it was

most likely MS. So this is all new to me. I hope that has answered

your questions???

April

p.s. Oh yeah btw most of the symptoms that Graves Disease causes are

relieved when you have the radioactive iodine treatment.

[Guest guest]

I don't understand much about it and the doctor didn't have a lot of

time to spend with me when I was in the hospital. I see her next

week and will ask more questions then. But it showed that I had

elevated protien levels that are common with MS.

April

[Guest guest]

Hello. My name is Eileen and my Mother, age 84, has Parkinson's

plus LBD. She moved to assisted living in July 2006 after her

neurologist kept mentioning it at every appointment. During the

process of moving my Mother, my sister who lived locally decided to

move out of state. I was angry because that left me to go through

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

and work with the realtors. My sister wanted me to be happy for her

but I was just the opposite. My other brother and sister live out of

state and came home for a week or less during the process to help.

On top of that my Mother kept saying she didn't want to move. She

and my Dad built the house in 1951 and she had lived in it for 54

years. My Dad died of lung cancer in 1996. Also, my sister asked why

Mother couldn't move to senior apartments with home care and my

brother said it should be Mother's decision to move. Neither of them

came to the appointments with the neurologist. I am sooo glad my

Mother is where she is.

Looking back, the first signs of Mother's dementia happened when she

was put on Vesicare first and then Oxybutynin (because her

prescription plan wouldn't cover Vesicare) for her bladder by her

regular doctor because she was getting up several times during the

night. She started putting on multiple layers of clothes. This

happened the week everyone was home in July 2006 and I thought it

was just from all the excitement of cleaning out her house and the

busyness. After the move to assisted living, I noticed that she was

still dressing in layers and figured that this was the newest

medication that must of been causing this behavior so I asked the

doctor to take her off of it and replaced it with Enablex. In

October 2007, she was confused again and asked to take her off the

bladder medication completely and she's been doing fine without it.

Mother had breast cancer in 2002, had a double mastectomy, and

radiation, and then was put on Tamoxifen. In August 2007, her

oncologist took her off of Tamoxifen and asked if she wanted to

start on Femara but at her age she really didn't need to. Mother

said she would try it and was given 2 months of samples. In less

than a week, she started hallucinating and was taken off of it

immediately.

Then in September 2007 she became very confused and hallucinating.

She said my brother, who lives locally and has down syndrome, was

laying on her bed most of the times but would never talk to her. She

even said I was there sometimes but wouldn't talk to her. She almost

had me convinced one time when I called her that my brother was

there. She asked if I wanted to talk to him. I said yes and she put

the phone down and went to the bathroom door and knocked on it and

told him that I was on the phone. When he didn't come out she forgot

I was on the phone and hung it up. Sometimes she didn't want to go

eat and leave my brother in the room alone. She even stopped our

conversation one time and looked at the bed and talked to my

brother. At that time she was on Sinemet (various doses, 7 times a

day) and Mirapex (taken 4 times a day). Her neurologist first took

her off the Sinemet and switched her to Stalevo and then took her

off the Mirapex and put her on a patch that is changed every 24

hours called Neupro which was just approved for use with Parkinson's

patients in 2007. She also prescribed Seroquel which did nothing and

after a month I asked to have it discontinued. A month later the

doctor prescribed another antipsychotic drug called Zyprexa.

A month ago, the Stavelo was increased to help Mother's mobility.

She has become very stooped in the last couple of months and always

has to be doing something and cannot sit still for very long. The

Director was concerned that Mother would fall and using alarms

wouldn't help because they would be going off constantly because she

is always moving around and can't sit still very long. Within two

weeks she started becoming confused and hallucinating again so the

dosage was reduced back down. Just this week I asked the doctor to

take her off of the Zyprexa because I felt it wasn't helping her.

Even the Director where she lives agreed. Mother seemed better

yesterday when I was with her but tonight she called me and said

that she was in another city and had supper there. The only time she

goes anywhere is with me.

Mother can't even dial the phone anymore. I have phone numbers

programmed into her phone and typed a list for her. There are only

two buttons she has to push and she just can't figure it out. Every

time I visit her she asks me to write out the phone numbers for her.

I tell her that they're programmed in the phone and to have a staff

person dial for her but she has a hard time understanding that. I

have to laugh sometimes because I'll look through her drawers or

desk and she has paper inside a plastic bag with about 10 rubber

bands around it. She also likes to use a lot of safety pins and

clothes pins. They're usually on pieces of newspaper.

Luckily Mother is a very gentle person. I can't imagine what some of

you are going through for those LO's who are violent. Her mind is

pretty clear when she talks about people and can remember things

that people tell her and most of the names of the staff. It's just

her daily activities that she has a hard time with.

I'm not sure if Mother can continue living at the assisted living.

At some point I think she is going to need more care. Do I need to

start looking for a nursing home that has a Memory Care unit? She

has fallen a couple of times and luckily has not gotten hurt.

There is a LBD caregiver support group locally and I will be going

on Monday night.

I apologize for the length of this. I'm glad that we have the

opportunity to share like this and not be limited on what we can and

cannot say. Just reading all the posts gives me comfort.

Eileen

P.S. Lin you asked me to explain the cleaning reference. I guess I'm

a little confused on what you're referring to. If you can let me

know, I'll be happy to explain.

> I am new to this group but want to let you know about my Mother

who

> also complained about not being able to see. She had her yearly

eye

> exam in December 2007 and there was little change in her

prescription.

> What we figured out was that because she is so stooped and her

head

> was so close to her plate when she ate that she couldn't see her

> food. She has bifocals and the doctor explained that normally

> bifocals are measured at a distance of 17 inches. The bifocals in

her

> new prescription are made at a distance of 13 inches. Also, we had

> reading glasses made that she wears when she eats. Because she is

so

> short, I bought a thick pad plus a pillow for her chair to sit on.

> This has helped her sit up higher on the chair and give her some

> distance from her plate.

>

> She mentioned double vision a few years ago and now has prisms in

her

> glasses. She has not said anything about double vision for a long

> time.

>

> I just picked up an eyewear retainer from the eye clinic that

slides

> on the bows of her glasses and goes behind her head to hold up her

> glasses. (Here is the Web site: http://www.croakies.com/ Click

> on " Sports " and then " Croakies. " ) No matter how many times she

gets

> her glasses adjusted they are always falling down because she is

so

> stooped.

>

> It is so comforting to know that there are so many similarities of

> what my Mother is going through with your LOs.

>

> Eileen

>

[Guest guest]

Eileen,

Welcome!

You may want to designate yourself with more than Eileen. We have a few here I

think. Like Eileen and your last initial. Or some do Eileen and their home

state.

It does make it a little easier.

Sounds like you are in the right place and you don't have to apologize for the

length of your email.. It is helpful for us to know what is happening. I am

sure will send you the list of drugs that many of us have found to be a

problem for our LO..(Loved one.) MDs just keep putting them on drugs and the

saying around here after you find the " right " drugs is go " low and go slow. "

There are some drugs that you aren't suppose to see a difference. They just

keep them from getting worse. (Exlon, Arisept )

Sounds like you got dumped with all the work of the house. Usually there is one

in the family that does. Then the rest fight about what is best and they don't

really know cuz they haven't been around.

I don't know how long your Mom can do AL

but usually eventually you will need a nh and especially if you aren't bringing

her home. So the sooner you begin looking the better chance you have of getting

the one you want and you will know which is the better place as you will have

time to do some visiting. It is pretty hard to move them and each time they

move, they seem to " take a hit. "

Hope some of this if helpful and keep asking questions. Someone here has been

there and done that.

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.

Introduction

Hello. My name is Eileen and my Mother, age 84, has Parkinson's

plus LBD. She moved to assisted living in July 2006 after her

neurologist kept mentioning it at every appointment. During the

process of moving my Mother, my sister who lived locally decided to

move out of state. I was angry because that left me to go through

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

and work with the realtors. My sister wanted me to be happy for her

but I was just the opposite. My other brother and sister live out of

state and came home for a week or less during the process to help.

On top of that my Mother kept saying she didn't want to move. She

and my Dad built the house in 1951 and she had lived in it for 54

years. My Dad died of lung cancer in 1996. Also, my sister asked why

Mother couldn't move to senior apartments with home care and my

brother said it should be Mother's decision to move. Neither of them

came to the appointments with the neurologist. I am sooo glad my

Mother is where she is.

Looking back, the first signs of Mother's dementia happened when she

was put on Vesicare first and then Oxybutynin (because her

prescription plan wouldn't cover Vesicare) for her bladder by her

regular doctor because she was getting up several times during the

night. She started putting on multiple layers of clothes. This

happened the week everyone was home in July 2006 and I thought it

was just from all the excitement of cleaning out her house and the

busyness. After the move to assisted living, I noticed that she was

still dressing in layers and figured that this was the newest

medication that must of been causing this behavior so I asked the

doctor to take her off of it and replaced it with Enablex. In

October 2007, she was confused again and asked to take her off the

bladder medication completely and she's been doing fine without it.

Mother had breast cancer in 2002, had a double mastectomy, and

radiation, and then was put on Tamoxifen. In August 2007, her

oncologist took her off of Tamoxifen and asked if she wanted to

start on Femara but at her age she really didn't need to. Mother

said she would try it and was given 2 months of samples. In less

than a week, she started hallucinating and was taken off of it

immediately.

Then in September 2007 she became very confused and hallucinating.

She said my brother, who lives locally and has down syndrome, was

laying on her bed most of the times but would never talk to her. She

even said I was there sometimes but wouldn't talk to her. She almost

had me convinced one time when I called her that my brother was

there. She asked if I wanted to talk to him. I said yes and she put

the phone down and went to the bathroom door and knocked on it and

told him that I was on the phone. When he didn't come out she forgot

I was on the phone and hung it up. Sometimes she didn't want to go

eat and leave my brother in the room alone. She even stopped our

conversation one time and looked at the bed and talked to my

brother. At that time she was on Sinemet (various doses, 7 times a

day) and Mirapex (taken 4 times a day). Her neurologist first took

her off the Sinemet and switched her to Stalevo and then took her

off the Mirapex and put her on a patch that is changed every 24

hours called Neupro which was just approved for use with Parkinson's

patients in 2007. She also prescribed Seroquel which did nothing and

after a month I asked to have it discontinued. A month later the

doctor prescribed another antipsychotic drug called Zyprexa.

A month ago, the Stavelo was increased to help Mother's mobility.

She has become very stooped in the last couple of months and always

has to be doing something and cannot sit still for very long. The

Director was concerned that Mother would fall and using alarms

wouldn't help because they would be going off constantly because she

is always moving around and can't sit still very long. Within two

weeks she started becoming confused and hallucinating again so the

dosage was reduced back down. Just this week I asked the doctor to

take her off of the Zyprexa because I felt it wasn't helping her.

Even the Director where she lives agreed. Mother seemed better

yesterday when I was with her but tonight she called me and said

that she was in another city and had supper there. The only time she

goes anywhere is with me.

Mother can't even dial the phone anymore. I have phone numbers

programmed into her phone and typed a list for her. There are only

two buttons she has to push and she just can't figure it out. Every

time I visit her she asks me to write out the phone numbers for her.

I tell her that they're programmed in the phone and to have a staff

person dial for her but she has a hard time understanding that. I

have to laugh sometimes because I'll look through her drawers or

desk and she has paper inside a plastic bag with about 10 rubber

bands around it. She also likes to use a lot of safety pins and

clothes pins. They're usually on pieces of newspaper.

Luckily Mother is a very gentle person. I can't imagine what some of

you are going through for those LO's who are violent. Her mind is

pretty clear when she talks about people and can remember things

that people tell her and most of the names of the staff. It's just

her daily activities that she has a hard time with.

I'm not sure if Mother can continue living at the assisted living.

At some point I think she is going to need more care. Do I need to

start looking for a nursing home that has a Memory Care unit? She

has fallen a couple of times and luckily has not gotten hurt.

There is a LBD caregiver support group locally and I will be going

on Monday night.

I apologize for the length of this. I'm glad that we have the

opportunity to share like this and not be limited on what we can and

cannot say. Just reading all the posts gives me comfort.

Eileen

P.S. Lin you asked me to explain the cleaning reference. I guess I'm

a little confused on what you're referring to. If you can let me

know, I'll be happy to explain.

> I am new to this group but want to let you know about my Mother

who

> also complained about not being able to see. She had her yearly

eye

> exam in December 2007 and there was little change in her

prescription.

> What we figured out was that because she is so stooped and her

head

> was so close to her plate when she ate that she couldn't see her

> food. She has bifocals and the doctor explained that normally

> bifocals are measured at a distance of 17 inches. The bifocals in

her

> new prescription are made at a distance of 13 inches. Also, we had

> reading glasses made that she wears when she eats. Because she is

so

> short, I bought a thick pad plus a pillow for her chair to sit on.

> This has helped her sit up higher on the chair and give her some

> distance from her plate.

>

> She mentioned double vision a few years ago and now has prisms in

her

> glasses. She has not said anything about double vision for a long

> time.

>

> I just picked up an eyewear retainer from the eye clinic that

slides

> on the bows of her glasses and goes behind her head to hold up her

> glasses. (Here is the Web site: http://www.croakies.com/ Click

> on " Sports " and then " Croakies. " ) No matter how many times she

gets

> her glasses adjusted they are always falling down because she is

so

> stooped.

>

> It is so comforting to know that there are so many similarities of

> what my Mother is going through with your LOs.

>

> Eileen

>

[Guest guest]

Welcome to the group. You certainly have a good record on what has happened

to your mother. We all will wish you good luck and we are all glad you

found us. I know this group has given me more information than anything

else I have found while caring for my husband with LBD w. Parkinsonian.

Good luck as you delve into all the info you will find and good luck with

your mother. Glad you are here. Leona

One tree can start a forest, one smile can start a friendship. One touch

can show

you care, one friend can make life worth living for.

[Guest guest]

Welcome Eileen. I'll be ending this message w/ some of the best links

(IMO) about LBD. Wanted to mention a couple of things re: your post.

Keep in mind that sometimes the meds for Parkinsonism worsens the

cognition. And that you should be careful w/ the antipsychotics b/c

50% of those w/ LBD cannot handle antipsychotics. My mother being one

of them w/in 3 weeks she went from being self-sufficient to needing

nursing home care on Risperidone. Make sure doctors START LOW, GO

SLOW re: the meds - b/c those w/ LBD are very sensitive to meds. One

of the links below should be referred to like the bible - it's Dr.

Boeve's document and it lists medications and the dosages and the

titrating schedule. Something you could refer to time and again.

Your comment re: your mother can't sit still echos my mom - although

my mom had akathasia (b/c of the Risperidone) - it made her

constantly wanting to move her legs, up/down, up/down, up on a

table/lap/chair and as soon as their placed, down again.

Also there are certain bladder meds that should be avoided - see this

link:

http://health.groups.yahoo.com/group/LBDcaregivers/message/62093

Can't dial a phone - I had bought a photo phone for my mom when it

was in the early stages. All she had to do was press the 'face' of

the person she wanted to call. Here's where you can get one:

http://www.dynamic-living.com/photo_phone.htm

Keep in mind that some items that we purchase for our LOs can be

bought extremely cheap and/or free on either of the following sites

(I write this b/c several of the items I had for my mom I got rid of

on craigslist - the photo phone listed above went to a caregiver on

this board though)

http://www.craigslist.org/about/sites.html

http://www.freecycle.org/

I would highly recommend finding a NH or ALF that deals with

dementia. I made the mistake of having my mother move into an ALF

that was not dementia-related (didn't have a diagnosis yet) although

she did enjoy it for the most part of 3 months, my mother had to move

many times w/in a short period of time = 4 months (condo to ALF to

hospital for observation (bad idea on our part shoulda just done the

ALF w/ dementia at this point b/c here is where they gave her

Risperidone) to ALF w/ dementia to hospital to NH) And w/ all these

moves, furniture was moved. Furniture to ALF, new furniture purchased

at ALF w/ dementia unit, Furniture at different places to storage

along w/ rest of furniture at her condo, all of the above finally to

my sisters. UGH! And although the ALF (non-dementia) was ideal on

mom's good days - her bad days far outnumbered her good days and it

was NOT the right place for her...

And re: your PS - your Yahoo ID is 'freetoclean1' - that's what Lin

was referring to. LOL

And here are those promised links (sorry for the long post)

A Must Read by Dr. Bradley Boeve

A Comprehensive Approach to Treatment can Significantly Improve the

Quality of Life of Patients with the Lewy body dementias.

http://www.lewybodydementia.org/AR0504BFB.php

Diagnostic Review & Medicine Management

by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing

and treating DLB/LBD. Includes recommended dosages.

http://www.lewybodydementia.org/Boevelink.php

*** 2006, September 08 -- Lewy body dementia

From MayoClinic.com, Special to CNN.com. Norma says, " ...this is the

most detailed, accurate information I've ever read about LBD. I think

it should be sent to all new caregivers AND doctors who aren't clear.

Thoughts everyone? " Keli says, " Definately yes!!! This is very

informative yet not overwhelming. It can easily be shared with

others. I intend to have my husband and children read it, and

hopefully my moms dr's as well. Very good information. "

http://www.cnn.com/HEALTH/library/DS/00795.html

LBD Brochure

(to print use legal size paper)

http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf

Live Chat Event with Dr. Gomperts, MD

Dr. Gomperts answered your questions on this Q & A session with Dr.

Gomperts, MD

http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

; loving daughter of Maureen of Boston, MA; dx'd with LBD in

2/2006 (confirmed via brain biopsy;) fell victim to rapid decline

from Risperidone; Mom fell into the 50% category of those who could

not handle antipsychotics; Was successful on Celexa, Exelon, ALA &

B1; Mom became my Guardian Angel on Sept. 30th, 2006.

> > I am new to this group but want to let you know about my Mother

> who

> > also complained about not being able to see. She had her yearly

> eye

> > exam in December 2007 and there was little change in her

> prescription.

> > What we figured out was that because she is so stooped and her

> head

> > was so close to her plate when she ate that she couldn't see her

> > food. She has bifocals and the doctor explained that normally

> > bifocals are measured at a distance of 17 inches. The bifocals in

> her

> > new prescription are made at a distance of 13 inches. Also, we

had

> > reading glasses made that she wears when she eats. Because she is

> so

> > short, I bought a thick pad plus a pillow for her chair to sit

on.

> > This has helped her sit up higher on the chair and give her some

> > distance from her plate.

> >

> > She mentioned double vision a few years ago and now has prisms in

> her

> > glasses. She has not said anything about double vision for a long

> > time.

> >

> > I just picked up an eyewear retainer from the eye clinic that

> slides

> > on the bows of her glasses and goes behind her head to hold up

her

> > glasses. (Here is the Web site: http://www.croakies.com/ Click

> > on " Sports " and then " Croakies. " ) No matter how many times she

> gets

> > her glasses adjusted they are always falling down because she is

> so

> > stooped.

> >

> > It is so comforting to know that there are so many similarities

of

> > what my Mother is going through with your LOs.

> >

> > Eileen

> >

>

[Guest guest]

Thanks Donna for the info about the meds. I just feel her

neurologist is just guessing a lot of the time of what meds will

help my Mother. It's also nice to know that she will need to move to

a nh so I can start looking for one. (Still getting used to all the

abbreviations!)

I'll sign myself as Eileen in MN.

>

> Eileen,

>

> Welcome!

>

> You may want to designate yourself with more than Eileen. We have

a few here I think. Like Eileen and your last initial. Or some do

Eileen and their home state.

>

> It does make it a little easier.

>

> Sounds like you are in the right place and you don't have to

apologize for the length of your email.. It is helpful for us to

know what is happening. I am sure will send you the list

of drugs that many of us have found to be a problem for our LO..

(Loved one.) MDs just keep putting them on drugs and the saying

around here after you find the " right " drugs is go " low and go

slow. "

>

> There are some drugs that you aren't suppose to see a difference.

They just keep them from getting worse. (Exlon, Arisept )

>

> Sounds like you got dumped with all the work of the house.

Usually there is one in the family that does. Then the rest fight

about what is best and they don't really know cuz they haven't been

around.

>

> I don't know how long your Mom can do AL

> but usually eventually you will need a nh and especially if you

aren't bringing her home. So the sooner you begin looking the

better chance you have of getting the one you want and you will know

which is the better place as you will have time to do some

visiting. It is pretty hard to move them and each time they move,

they seem to " take a hit. "

>

> Hope some of this if helpful and keep asking questions. Someone

here has been there and done that.

>

> 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.

>

>

> Introduction

>

> Hello. My name is Eileen and my Mother, age 84, has Parkinson's

> plus LBD. She moved to assisted living in July 2006 after her

> neurologist kept mentioning it at every appointment. During the

> process of moving my Mother, my sister who lived locally decided

to move out of state. I was angry because that left me to go through

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

> and work with the realtors. My sister wanted me to be happy for

her but I was just the opposite. My other brother and sister live

out of state and came home for a week or less during the process to

help.

> On top of that my Mother kept saying she didn't want to move. She

> and my Dad built the house in 1951 and she had lived in it for 54

> years. My Dad died of lung cancer in 1996. Also, my sister asked

why Mother couldn't move to senior apartments with home care and my

> brother said it should be Mother's decision to move. Neither of

them came to the appointments with the neurologist. I am sooo glad

my Mother is where she is.

>

> Looking back, the first signs of Mother's dementia happened when

she was put on Vesicare first and then Oxybutynin (because her

> prescription plan wouldn't cover Vesicare) for her bladder by her

> regular doctor because she was getting up several times during the

> night. She started putting on multiple layers of clothes. This

> happened the week everyone was home in July 2006 and I thought it

> was just from all the excitement of cleaning out her house and the

> busyness. After the move to assisted living, I noticed that she

was still dressing in layers and figured that this was the newest

> medication that must of been causing this behavior so I asked the

> doctor to take her off of it and replaced it with Enablex. In

> October 2007, she was confused again and asked to take her off the

> bladder medication completely and she's been doing fine without it.

>

> Mother had breast cancer in 2002, had a double mastectomy, and

> radiation, and then was put on Tamoxifen. In August 2007, her

> oncologist took her off of Tamoxifen and asked if she wanted to

> start on Femara but at her age she really didn't need to. Mother

> said she would try it and was given 2 months of samples. In less

> than a week, she started hallucinating and was taken off of it

> immediately.

>

> Then in September 2007 she became very confused and hallucinating.

> She said my brother, who lives locally and has down syndrome, was

> laying on her bed most of the times but would never talk to her.

She even said I was there sometimes but wouldn't talk to her. She

almost had me convinced one time when I called her that my brother

was there. She asked if I wanted to talk to him. I said yes and she

put the phone down and went to the bathroom door and knocked on it

and told him that I was on the phone. When he didn't come out she

forgot I was on the phone and hung it up. Sometimes she didn't want

to go eat and leave my brother in the room alone. She even stopped

our conversation one time and looked at the bed and talked to my

> brother. At that time she was on Sinemet (various doses, 7 times a

> day) and Mirapex (taken 4 times a day). Her neurologist first took

> her off the Sinemet and switched her to Stalevo and then took her

> off the Mirapex and put her on a patch that is changed every 24

> hours called Neupro which was just approved for use with

Parkinson's patients in 2007. She also prescribed Seroquel which did

nothing and after a month I asked to have it discontinued. A month

later the doctor prescribed another antipsychotic drug called

Zyprexa.

>

> A month ago, the Stavelo was increased to help Mother's mobility.

> She has become very stooped in the last couple of months and

always has to be doing something and cannot sit still for very long.

The Director was concerned that Mother would fall and using alarms

> wouldn't help because they would be going off constantly because

she is always moving around and can't sit still very long. Within

two weeks she started becoming confused and hallucinating again so

the dosage was reduced back down. Just this week I asked the doctor

to take her off of the Zyprexa because I felt it wasn't helping her.

> Even the Director where she lives agreed. Mother seemed better

> yesterday when I was with her but tonight she called me and said

> that she was in another city and had supper there. The only time

she goes anywhere is with me.

>

> Mother can't even dial the phone anymore. I have phone numbers

> programmed into her phone and typed a list for her. There are only

> two buttons she has to push and she just can't figure it out.

Every time I visit her she asks me to write out the phone numbers

for her. I tell her that they're programmed in the phone and to have

a staff person dial for her but she has a hard time understanding

that. I have to laugh sometimes because I'll look through her

drawers or desk and she has paper inside a plastic bag with about 10

rubber bands around it. She also likes to use a lot of safety pins

and clothes pins. They're usually on pieces of newspaper.

>

> Luckily Mother is a very gentle person. I can't imagine what some

of you are going through for those LO's who are violent. Her mind is

> pretty clear when she talks about people and can remember things

> that people tell her and most of the names of the staff. It's just

> her daily activities that she has a hard time with.

>

> I'm not sure if Mother can continue living at the assisted living.

> At some point I think she is going to need more care. Do I need to

> start looking for a nursing home that has a Memory Care unit? She

> has fallen a couple of times and luckily has not gotten hurt.

>

> There is a LBD caregiver support group locally and I will be going

> on Monday night.

>

> I apologize for the length of this. I'm glad that we have the

> opportunity to share like this and not be limited on what we can

and cannot say. Just reading all the posts gives me comfort.

>

> Eileen

>

> P.S. Lin you asked me to explain the cleaning reference. I guess

I'm a little confused on what you're referring to. If you can let me

> know, I'll be happy to explain.

[Guest guest]

Eileen in MN

Check out the Links section:

http://health.groups.yahoo.com/group/LBDcaregivers/links

And in the folder marked:

Nursing Home / Assisted Living / Long Term Care Search

A list of sites that may help in one of your most difficult

decisions.

For information that may help you find a nursing home.

>

> Thanks Donna for the info about the meds. I just feel her

> neurologist is just guessing a lot of the time of what meds will

> help my Mother. It's also nice to know that she will need to move

to

> a nh so I can start looking for one. (Still getting used to all the

> abbreviations!)

>

> I'll sign myself as Eileen in MN.

>

[Guest guest]

Can you get to Mayo? How far are you from Rochester?

I am from Stillwater orignally!

Carol

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

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

[Guest guest]

,

Thank you for all these links! You are a wealth of information. I

would never have known found these on my own. You are a blessing to

all of us with the knowledge you have.

I went to see my Mother this afternoon. I had gotten a call earlier

from a staff person at the AL where she's living saying that my

Mother thought my brother from out state and a friend were coming to

visit her. Neither of them were coming.

When I walked into her room, she was sitting in her chair and looked

so sad. She wasn't doing anything, just sitting there. On Monday I

had asked her neurologist to stop the Zyprexa (anti-psychotic). Now

she's starting to become more confused and hallucinating. She was

telling me that at night there's a girl in her room and she won't

leave until her dog gets a pill. She asked me who the parents were

of the children she sees. Then she said she smells smoke sometimes

coming from under the floor. When I walked her down for supper she

turned around and talked to my brother who has down syndrome and who

was not there. The couple of hours I was there she did not mention

that he was there.

She knows there is something wrong with her " brain. " Today she asked

me if there was some place she could go to make her mind better and

if she should see a psychiatrist. I haven't told her that she has

LBD. I blame everything on the PD. I guess I don't know how to

answer some of questions about her mental status.

My Mother goes in streaks where she has to be doing something all

the time and now today she sat in her chair for a long period of

time and was quieter. I will read Dr. Bradley Boeve's links about

the meds.

I went to the link for the photo phone. What a great idea! I told my

Mother about it today because she asked me again to write out phone

numbers for her. I plan on ordering one for her, soon!

Thanks to those who give us as caregivers compassion and love as it

means a lot to us. As I've read from several posts and from

experience myself that family is not always there for us during

these hard and stressful times. It's so wonderful that you pass on

the knowledge that you've gained to those of us who are experiencing

this awful disease through our LOs. Your LOs were and are lucky to

have you in their corners. My condolences to those whose LOs have

passed on and to those who are living with LOs with this disease, we

are so lucky and blessed to be a part of this group.

Eileen in MN

>

> Welcome Eileen. I'll be ending this message w/ some of the best

links

> (IMO) about LBD. Wanted to mention a couple of things re: your

post.

>

> Keep in mind that sometimes the meds for Parkinsonism worsens the

> cognition. And that you should be careful w/ the antipsychotics

b/c

> 50% of those w/ LBD cannot handle antipsychotics. My mother being

one

> of them w/in 3 weeks she went from being self-sufficient to

needing

> nursing home care on Risperidone. Make sure doctors START LOW, GO

> SLOW re: the meds - b/c those w/ LBD are very sensitive to meds.

One

> of the links below should be referred to like the bible - it's Dr.

> Boeve's document and it lists medications and the dosages and the

> titrating schedule. Something you could refer to time and again.

>

> Your comment re: your mother can't sit still echos my mom -

although

> my mom had akathasia (b/c of the Risperidone) - it made her

> constantly wanting to move her legs, up/down, up/down, up on a

> table/lap/chair and as soon as their placed, down again.

>

> Also there are certain bladder meds that should be avoided - see

this

> link:

> http://health.groups.yahoo.com/group/LBDcaregivers/message/62093

>

> Can't dial a phone - I had bought a photo phone for my mom when it

> was in the early stages. All she had to do was press the 'face' of

> the person she wanted to call. Here's where you can get one:

> http://www.dynamic-living.com/photo_phone.htm

>

> Keep in mind that some items that we purchase for our LOs can be

> bought extremely cheap and/or free on either of the following

sites

> (I write this b/c several of the items I had for my mom I got rid

of

> on craigslist - the photo phone listed above went to a caregiver

on

> this board though)

> http://www.craigslist.org/about/sites.html

> http://www.freecycle.org/

>

> I would highly recommend finding a NH or ALF that deals with

> dementia. I made the mistake of having my mother move into an ALF

> that was not dementia-related (didn't have a diagnosis yet)

although

> she did enjoy it for the most part of 3 months, my mother had to

move

> many times w/in a short period of time = 4 months (condo to ALF to

> hospital for observation (bad idea on our part shoulda just done

the

> ALF w/ dementia at this point b/c here is where they gave her

> Risperidone) to ALF w/ dementia to hospital to NH) And w/ all

these

> moves, furniture was moved. Furniture to ALF, new furniture

purchased

> at ALF w/ dementia unit, Furniture at different places to storage

> along w/ rest of furniture at her condo, all of the above finally

to

> my sisters. UGH! And although the ALF (non-dementia) was ideal on

> mom's good days - her bad days far outnumbered her good days and

it

> was NOT the right place for her...

>

> And re: your PS - your Yahoo ID is 'freetoclean1' - that's what

Lin

> was referring to. LOL

>

> And here are those promised links (sorry for the long post)

>

> A Must Read by Dr. Bradley Boeve

> A Comprehensive Approach to Treatment can Significantly Improve the

> Quality of Life of Patients with the Lewy body dementias.

> http://www.lewybodydementia.org/AR0504BFB.php

>

> Diagnostic Review & Medicine Management

> by Bradley F. Boeve, MD (October 2004) Physicians guide to

diagnosing

> and treating DLB/LBD. Includes recommended dosages.

> http://www.lewybodydementia.org/Boevelink.php

>

> *** 2006, September 08 -- Lewy body dementia

> From MayoClinic.com, Special to CNN.com. Norma says, " ...this is

the

> most detailed, accurate information I've ever read about LBD. I

think

> it should be sent to all new caregivers AND doctors who aren't

clear.

> Thoughts everyone? " Keli says, " Definately yes!!! This is very

> informative yet not overwhelming. It can easily be shared with

> others. I intend to have my husband and children read it, and

> hopefully my moms dr's as well. Very good information. "

> http://www.cnn.com/HEALTH/library/DS/00795.html

>

> LBD Brochure

> (to print use legal size paper)

> http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf

>

> Live Chat Event with Dr. Gomperts, MD

> Dr. Gomperts answered your questions on this Q & A session with Dr.

> Gomperts, MD

> http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

>

> ; loving daughter of Maureen of Boston, MA; dx'd with LBD

in

> 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline

> from Risperidone; Mom fell into the 50% category of those who

could

> not handle antipsychotics; Was successful on Celexa, Exelon, ALA &

> B1; Mom became my Guardian Angel on Sept. 30th, 2006.

>

[Guest guest]

Hi, Carol,

I live in Woodbury which is on the east side of St. . My Mother

lives in River Falls, WI which is 30 minutes east of me. Rochester is

about 2 hours from me.

Eileen in MN

>

> Can you get to Mayo? How far are you from Rochester?

>

> I am from Stillwater orignally!

>

> Carol

[Guest guest]

Eileen,

this is the placeto be for loved one with pdd *parkinsondiseasewithdementia*

and lbd lewy body dementia, in pdd the parkinson symptoms show up first and are

treatedwhich then worsens the lbd issues. it is an ugly vicious cycle. there is

no way offof this roller coaster until they 'go home' many times they refer to

teh past like yesterday one day when i was cleaning daddys dirty but he was

almot 70 when e died, he said remembr just yesterday i was changig your diaper,

and i would smile andsay yes, the worst thing to do is argue and correct then,

although that is the easiest and less frustrating for us but the worst thing we

can do for our lo. a day to us could be a year to them today and then tomorrow

htey are back in the present or even in the future. that is the horrors for them

with alz once the patient lost it it s gone and the family hutrts,but can you

imagine knowing yeserday you could cut your food but today youlook at fork and

knife and not have a clue what

to do with it, it is terrible. but just reemmber when it comes to any med

changes, think like a turtle o low and go slow, too many changes than you cant

tell where teh problem lies, good lcuk nd hugs sharon

freetoclean1 wrote:

,

Thank you for all these links! You are a wealth of information. I

would never have known found these on my own. You are a blessing to

all of us with the knowledge you have.

I went to see my Mother this afternoon. I had gotten a call earlier

from a staff person at the AL where she's living saying that my

Mother thought my brother from out state and a friend were coming to

visit her. Neither of them were coming.

When I walked into her room, she was sitting in her chair and looked

so sad. She wasn't doing anything, just sitting there. On Monday I

had asked her neurologist to stop the Zyprexa (anti-psychotic). Now

she's starting to become more confused and hallucinating. She was

telling me that at night there's a girl in her room and she won't

leave until her dog gets a pill. She asked me who the parents were

of the children she sees. Then she said she smells smoke sometimes

coming from under the floor. When I walked her down for supper she

turned around and talked to my brother who has down syndrome and who

was not there. The couple of hours I was there she did not mention

that he was there.

She knows there is something wrong with her " brain. " Today she asked

me if there was some place she could go to make her mind better and

if she should see a psychiatrist. I haven't told her that she has

LBD. I blame everything on the PD. I guess I don't know how to

answer some of questions about her mental status.

My Mother goes in streaks where she has to be doing something all

the time and now today she sat in her chair for a long period of

time and was quieter. I will read Dr. Bradley Boeve's links about

the meds.

I went to the link for the photo phone. What a great idea! I told my

Mother about it today because she asked me again to write out phone

numbers for her. I plan on ordering one for her, soon!

Thanks to those who give us as caregivers compassion and love as it

means a lot to us. As I've read from several posts and from

experience myself that family is not always there for us during

these hard and stressful times. It's so wonderful that you pass on

the knowledge that you've gained to those of us who are experiencing

this awful disease through our LOs. Your LOs were and are lucky to

have you in their corners. My condolences to those whose LOs have

passed on and to those who are living with LOs with this disease, we

are so lucky and blessed to be a part of this group.

Eileen in MN

>

> Welcome Eileen. I'll be ending this message w/ some of the best

links

> (IMO) about LBD. Wanted to mention a couple of things re: your

post.

>

> Keep in mind that sometimes the meds for Parkinsonism worsens the

> cognition. And that you should be careful w/ the antipsychotics

b/c

> 50% of those w/ LBD cannot handle antipsychotics. My mother being

one

> of them w/in 3 weeks she went from being self-sufficient to

needing

> nursing home care on Risperidone. Make sure doctors START LOW, GO

> SLOW re: the meds - b/c those w/ LBD are very sensitive to meds.

One

> of the links below should be referred to like the bible - it's Dr.

> Boeve's document and it lists medications and the dosages and the

> titrating schedule. Something you could refer to time and again.

>

> Your comment re: your mother can't sit still echos my mom -

although

> my mom had akathasia (b/c of the Risperidone) - it made her

> constantly wanting to move her legs, up/down, up/down, up on a

> table/lap/chair and as soon as their placed, down again.

>

> Also there are certain bladder meds that should be avoided - see

this

> link:

> http://health.groups.yahoo.com/group/LBDcaregivers/message/62093

>

> Can't dial a phone - I had bought a photo phone for my mom when it

> was in the early stages. All she had to do was press the 'face' of

> the person she wanted to call. Here's where you can get one:

> http://www.dynamic-living.com/photo_phone.htm

>

> Keep in mind that some items that we purchase for our LOs can be

> bought extremely cheap and/or free on either of the following

sites

> (I write this b/c several of the items I had for my mom I got rid

of

> on craigslist - the photo phone listed above went to a caregiver

on

> this board though)

> http://www.craigslist.org/about/sites.html

> http://www.freecycle.org/

>

> I would highly recommend finding a NH or ALF that deals with

> dementia. I made the mistake of having my mother move into an ALF

> that was not dementia-related (didn't have a diagnosis yet)

although

> she did enjoy it for the most part of 3 months, my mother had to

move

> many times w/in a short period of time = 4 months (condo to ALF to

> hospital for observation (bad idea on our part shoulda just done

the

> ALF w/ dementia at this point b/c here is where they gave her

> Risperidone) to ALF w/ dementia to hospital to NH) And w/ all

these

> moves, furniture was moved. Furniture to ALF, new furniture

purchased

> at ALF w/ dementia unit, Furniture at different places to storage

> along w/ rest of furniture at her condo, all of the above finally

to

> my sisters. UGH! And although the ALF (non-dementia) was ideal on

> mom's good days - her bad days far outnumbered her good days and

it

> was NOT the right place for her...

>

> And re: your PS - your Yahoo ID is 'freetoclean1' - that's what

Lin

> was referring to. LOL

>

> And here are those promised links (sorry for the long post)

>

> A Must Read by Dr. Bradley Boeve

> A Comprehensive Approach to Treatment can Significantly Improve the

> Quality of Life of Patients with the Lewy body dementias.

> http://www.lewybodydementia.org/AR0504BFB.php

>

> Diagnostic Review & Medicine Management

> by Bradley F. Boeve, MD (October 2004) Physicians guide to

diagnosing

> and treating DLB/LBD. Includes recommended dosages.

> http://www.lewybodydementia.org/Boevelink.php

>

> *** 2006, September 08 -- Lewy body dementia

> From MayoClinic.com, Special to CNN.com. Norma says, " ...this is

the

> most detailed, accurate information I've ever read about LBD. I

think

> it should be sent to all new caregivers AND doctors who aren't

clear.

> Thoughts everyone? " Keli says, " Definately yes!!! This is very

> informative yet not overwhelming. It can easily be shared with

> others. I intend to have my husband and children read it, and

> hopefully my moms dr's as well. Very good information. "

> http://www.cnn.com/HEALTH/library/DS/00795.html

>

> LBD Brochure

> (to print use legal size paper)

> http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf

>

> Live Chat Event with Dr. Gomperts, MD

> Dr. Gomperts answered your questions on this Q & A session with Dr.

> Gomperts, MD

> http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

>

> ; loving daughter of Maureen of Boston, MA; dx'd with LBD

in

> 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline

> from Risperidone; Mom fell into the 50% category of those who

could

> not handle antipsychotics; Was successful on Celexa, Exelon, ALA &

> B1; Mom became my Guardian Angel on Sept. 30th, 2006.

>

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

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Eileen,

They really know " something is wrong " and it seems like you need an explanation

for her. Otherwise she thinks she is going crazy. For our older folk, while

they don't want dementia, they don't want to go crazy!!!

Maybe giving it the LBD name will help her understand. And like most people at

least it isn't Alzheimers or crazy. Letting her know the MD is trying meds to

help her mind and you will be there for her to help, might be a relief.

Remember she can't can't reason, so it isn't going to be as shocking to her as

it was to you.

Just a thought.

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: Introduction

,

Thank you for all these links! You are a wealth of information. I

would never have known found these on my own. You are a blessing to

all of us with the knowledge you have.

I went to see my Mother this afternoon. I had gotten a call earlier

from a staff person at the AL where she's living saying that my

Mother thought my brother from out state and a friend were coming to

visit her. Neither of them were coming.

When I walked into her room, she was sitting in her chair and looked

so sad. She wasn't doing anything, just sitting there. On Monday I

had asked her neurologist to stop the Zyprexa (anti-psychotic). Now

she's starting to become more confused and hallucinating. She was

telling me that at night there's a girl in her room and she won't

leave until her dog gets a pill. She asked me who the parents were

of the children she sees. Then she said she smells smoke sometimes

coming from under the floor. When I walked her down for supper she

turned around and talked to my brother who has down syndrome and who

was not there. The couple of hours I was there she did not mention

that he was there.

She knows there is something wrong with her " brain. " Today she asked

me if there was some place she could go to make her mind better and

if she should see a psychiatrist. I haven't told her that she has

LBD. I blame everything on the PD. I guess I don't know how to

answer some of questions about her mental status.

My Mother goes in streaks where she has to be doing something all

the time and now today she sat in her chair for a long period of

time and was quieter. I will read Dr. Bradley Boeve's links about

the meds.

I went to the link for the photo phone. What a great idea! I told my

Mother about it today because she asked me again to write out phone

numbers for her. I plan on ordering one for her, soon!

Thanks to those who give us as caregivers compassion and love as it

means a lot to us. As I've read from several posts and from

experience myself that family is not always there for us during

these hard and stressful times. It's so wonderful that you pass on

the knowledge that you've gained to those of us who are experiencing

this awful disease through our LOs. Your LOs were and are lucky to

have you in their corners. My condolences to those whose LOs have

passed on and to those who are living with LOs with this disease, we

are so lucky and blessed to be a part of this group.

Eileen in MN

>

> Welcome Eileen. I'll be ending this message w/ some of the best

links

> (IMO) about LBD. Wanted to mention a couple of things re: your

post.

>

> Keep in mind that sometimes the meds for Parkinsonism worsens the

> cognition. And that you should be careful w/ the antipsychotics

b/c

> 50% of those w/ LBD cannot handle antipsychotics. My mother being

one

> of them w/in 3 weeks she went from being self-sufficient to

needing

> nursing home care on Risperidone. Make sure doctors START LOW, GO

> SLOW re: the meds - b/c those w/ LBD are very sensitive to meds.

One

> of the links below should be referred to like the bible - it's Dr.

> Boeve's document and it lists medications and the dosages and the

> titrating schedule. Something you could refer to time and again.

>

> Your comment re: your mother can't sit still echos my mom -

although

> my mom had akathasia (b/c of the Risperidone) - it made her

> constantly wanting to move her legs, up/down, up/down, up on a

> table/lap/chair and as soon as their placed, down again.

>

> Also there are certain bladder meds that should be avoided - see

this

> link:

> http://health.groups.yahoo.com/group/LBDcaregivers/message/62093

>

> Can't dial a phone - I had bought a photo phone for my mom when it

> was in the early stages. All she had to do was press the 'face' of

> the person she wanted to call. Here's where you can get one:

> http://www.dynamic-living.com/photo_phone.htm

>

> Keep in mind that some items that we purchase for our LOs can be

> bought extremely cheap and/or free on either of the following

sites

> (I write this b/c several of the items I had for my mom I got rid

of

> on craigslist - the photo phone listed above went to a caregiver

on

> this board though)

> http://www.craigslist.org/about/sites.html

> http://www.freecycle.org/

>

> I would highly recommend finding a NH or ALF that deals with

> dementia. I made the mistake of having my mother move into an ALF

> that was not dementia-related (didn't have a diagnosis yet)

although

> she did enjoy it for the most part of 3 months, my mother had to

move

> many times w/in a short period of time = 4 months (condo to ALF to

> hospital for observation (bad idea on our part shoulda just done

the

> ALF w/ dementia at this point b/c here is where they gave her

> Risperidone) to ALF w/ dementia to hospital to NH) And w/ all

these

> moves, furniture was moved. Furniture to ALF, new furniture

purchased

> at ALF w/ dementia unit, Furniture at different places to storage

> along w/ rest of furniture at her condo, all of the above finally

to

> my sisters. UGH! And although the ALF (non-dementia) was ideal on

> mom's good days - her bad days far outnumbered her good days and

it

> was NOT the right place for her...

>

> And re: your PS - your Yahoo ID is 'freetoclean1' - that's what

Lin

> was referring to. LOL

>

> And here are those promised links (sorry for the long post)

>

> A Must Read by Dr. Bradley Boeve

> A Comprehensive Approach to Treatment can Significantly Improve the

> Quality of Life of Patients with the Lewy body dementias.

> http://www.lewybodydementia.org/AR0504BFB.php

>

> Diagnostic Review & Medicine Management

> by Bradley F. Boeve, MD (October 2004) Physicians guide to

diagnosing

> and treating DLB/LBD. Includes recommended dosages.

> http://www.lewybodydementia.org/Boevelink.php

>

> *** 2006, September 08 -- Lewy body dementia

> From MayoClinic.com, Special to CNN.com. Norma says, " ...this is

the

> most detailed, accurate information I've ever read about LBD. I

think

> it should be sent to all new caregivers AND doctors who aren't

clear.

> Thoughts everyone? " Keli says, " Definately yes!!! This is very

> informative yet not overwhelming. It can easily be shared with

> others. I intend to have my husband and children read it, and

> hopefully my moms dr's as well. Very good information. "

> http://www.cnn.com/HEALTH/library/DS/00795.html

>

> LBD Brochure

> (to print use legal size paper)

> http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf

>

> Live Chat Event with Dr. Gomperts, MD

> Dr. Gomperts answered your questions on this Q & A session with Dr.

> Gomperts, MD

> http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

>

> ; loving daughter of Maureen of Boston, MA; dx'd with LBD

in

> 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline

> from Risperidone; Mom fell into the 50% category of those who

could

> not handle antipsychotics; Was successful on Celexa, Exelon, ALA &

> B1; Mom became my Guardian Angel on Sept. 30th, 2006.

>

[Guest guest]

Sharon,

Thanks for your comments. Right now I have no idea of what my Mother

will be going through in the future. I can't seem to get any

straight answers from the neurologist. I asked her once if there is

something printed about the different stages of Parkinson's and she

said there wasn't yet she continues to say that my Mother is in the

advanced stages. Yes, the Parkinson's symptoms showed up first and

now that she has LBD the meds don't seem to be working. I will

remember that when Mother tries a new med that is should be at a low

dose and slow. The neurologist has not said that Mother has LBD only

that she has dementia but her regular doctor has done some research

because he isn't real familiar with Parkinson's and he's the one

that mentioned LBD.

Hugs to you, too,

Eileen in MN

>

>

> Eileen,

> this is the placeto be for loved one with pdd

*parkinsondiseasewithdementia* and lbd lewy body dementia, in pdd

the parkinson symptoms show up first and are treatedwhich then

worsens the lbd issues. it is an ugly vicious cycle. there is no

way offof this roller coaster until they 'go home' many times they

refer to teh past like yesterday one day when i was cleaning daddys

dirty but he was almot 70 when e died, he said remembr just

yesterday i was changig your diaper, and i would smile andsay yes,

the worst thing to do is argue and correct then, although that is

the easiest and less frustrating for us but the worst thing we can

do for our lo. a day to us could be a year to them today and then

tomorrow htey are back in the present or even in the future. that is

the horrors for them with alz once the patient lost it it s gone and

the family hutrts,but can you imagine knowing yeserday you could cut

your food but today youlook at fork and knife and not have a clue

what

> to do with it, it is terrible. but just reemmber when it comes

to any med changes, think like a turtle o low and go slow, too many

changes than you cant tell where teh problem lies, good lcuk nd

hugs sharon

>

>

[Guest guest]

Thanks, Donna R,

I will tell her that she has LBD and that the doctor is trying meds

to help her mind. It might help and give her some relief. She does

feel like she's going crazy. One thing I've learned through this

experience of being a caregiver is PATIENCE. I never knew I had so

much. I am usually calm when I talk to her which helps to calm her,

too. It's just so sad what LBD does to a person who was so mentally

sharp.

Blessings,

Eileen in MN

>

> Eileen,

>

> They really know " something is wrong " and it seems like you need

an explanation for her. Otherwise she thinks she is going crazy.

For our older folk, while they don't want dementia, they don't want

to go crazy!!!

>

> Maybe giving it the LBD name will help her understand. And like

most people at least it isn't Alzheimers or crazy. Letting her know

the MD is trying meds to help her mind and you will be there for her

to help, might be a relief. Remember she can't can't reason, so it

isn't going to be as shocking to her as it was to you.

>

> Just a thought.

>

> 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: Introduction

>

> ,

>

> Thank you for all these links! You are a wealth of information. I

> would never have known found these on my own. You are a blessing

to

> all of us with the knowledge you have.

>

> I went to see my Mother this afternoon. I had gotten a call

earlier

> from a staff person at the AL where she's living saying that my

> Mother thought my brother from out state and a friend were coming

to

> visit her. Neither of them were coming.

>

> When I walked into her room, she was sitting in her chair and

looked

> so sad. She wasn't doing anything, just sitting there. On Monday I

> had asked her neurologist to stop the Zyprexa (anti-psychotic).

Now

> she's starting to become more confused and hallucinating. She was

> telling me that at night there's a girl in her room and she won't

> leave until her dog gets a pill. She asked me who the parents were

> of the children she sees. Then she said she smells smoke sometimes

> coming from under the floor. When I walked her down for supper she

> turned around and talked to my brother who has down syndrome and

who

> was not there. The couple of hours I was there she did not mention

> that he was there.

>

> She knows there is something wrong with her " brain. " Today she

asked

> me if there was some place she could go to make her mind better

and

> if she should see a psychiatrist. I haven't told her that she has

> LBD. I blame everything on the PD. I guess I don't know how to

> answer some of questions about her mental status.

>

> My Mother goes in streaks where she has to be doing something all

> the time and now today she sat in her chair for a long period of

> time and was quieter. I will read Dr. Bradley Boeve's links about

> the meds.

>

> I went to the link for the photo phone. What a great idea! I told

my

> Mother about it today because she asked me again to write out

phone

> numbers for her. I plan on ordering one for her, soon!

>

> Thanks to those who give us as caregivers compassion and love as

it

> means a lot to us. As I've read from several posts and from

> experience myself that family is not always there for us during

> these hard and stressful times. It's so wonderful that you pass on

> the knowledge that you've gained to those of us who are

experiencing

> this awful disease through our LOs. Your LOs were and are lucky to

> have you in their corners. My condolences to those whose LOs have

> passed on and to those who are living with LOs with this disease,

we

> are so lucky and blessed to be a part of this group.

>

> Eileen in MN

>

[Guest guest]

Eileen - here are the stages of Parkinsons:

http://www.webmd.com/parkinsons-disease/parkinsons-stages

And we have a Phases list for LBD (disclaimer - it was put together

by caregivers' observations - so not one that doctors made up)

To view go to our Files section:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

And go into the folder marked:

LBD Phases

List of Phases put together by the LBD Caring Spouses Group

>

> Sharon,

>

> Thanks for your comments. Right now I have no idea of what my

Mother

> will be going through in the future. I can't seem to get any

> straight answers from the neurologist. I asked her once if there is

> something printed about the different stages of Parkinson's and she

> said there wasn't yet she continues to say that my Mother is in the

> advanced stages. Yes, the Parkinson's symptoms showed up first and

> now that she has LBD the meds don't seem to be working. I will

> remember that when Mother tries a new med that is should be at a

low

> dose and slow. The neurologist has not said that Mother has LBD

only

> that she has dementia but her regular doctor has done some research

> because he isn't real familiar with Parkinson's and he's the one

> that mentioned LBD.

>

> Hugs to you, too,

> Eileen in MN

[Guest guest]

Thanks, , for these links.

Eileen in MN

> >

> > Sharon,

> >

> > Thanks for your comments. Right now I have no idea of what my

> Mother

> > will be going through in the future. I can't seem to get any

> > straight answers from the neurologist. I asked her once if there

is

> > something printed about the different stages of Parkinson's and

she

> > said there wasn't yet she continues to say that my Mother is in

the

> > advanced stages. Yes, the Parkinson's symptoms showed up first

and

> > now that she has LBD the meds don't seem to be working. I will

> > remember that when Mother tries a new med that is should be at a

> low

> > dose and slow. The neurologist has not said that Mother has LBD

> only

> > that she has dementia but her regular doctor has done some

research

> > because he isn't real familiar with Parkinson's and he's the one

> > that mentioned LBD.

> >

> > Hugs to you, too,

> > Eileen in MN

>

[Guest guest]

I 2nd what Carol says. If you can get your LO to a Mayo clinic you'll

most definitely be in the right hands. Our famoso Dr. Boeve is from

Mayo in MN.

If you can't get to Rochester - here's the other Mayo clinics in MN:

Outreach services

Mayo Clinic neurologists also see patients at several regional clinics

and hospitals each week. Current communities served by a visiting Mayo

Clinic neurologist are:

Decorah Clinic, Decorah, Iowa

Cannon Valley Clinic, Faribault, Minn.

Federal Medical Center, Rochester, Minn.

Owatonna Clinic, Owatonna, Minn.

Waseca Medical Center, Waseca, Minn.

Winona Community Memorial Hospital, Winona, Minn.

http://www.mayoclinic.org/neurology-rst/

And here are the doctors at Mayo who are Lewy-savvy:

http://www.mayoclinic.org/neurology-rst/behavneuro.html

> >

> > Can you get to Mayo? How far are you from Rochester?

> >

> > I am from Stillwater orignally!

> >

> > Carol

>