Hello

[Guest guest]

Welcome!

I enjoyed reading your post! My Grandmother has the LBD and she is

at a plateau at this time I think. I am trying to enjoy what I can

now. She is more cognitive than she was a little over a month ago.

I have found that very few of the Dr's and nurses that I have come

into contact w/ since Granny was diagnosed in Aug. even knows what

LBD is, let alone what it can do. Granny still can not use a phone

or remember her own phone number or mine for that matter. But at

times she just floors me w/ what she can remember...placement of

different papers, things of that nature. In Jan when I was getting

their taxes together to take to the CPA she was convinced that I had

waited too long and they were past due. When we got them to the CPA

she finally settled down w/ that. But, like I said, here lately

things are going pretty good.

Oh, I have a question. Does anyone else here have their loved one

complain of dizziness? Granny is complaining of that alot recently

and I am wondering if it goes along w/ the LBD?

Welcome again! Hope you find help and strength here among the

members .

Nansea

> I'm one of your new members, and, yes, it was Cheryl that brought

me to you. I've read through the messages in your archives and find

that we do indeed have a lot to share. I extend my heartfelt

sympathy to Nigel, and to all of you as you watch your loved ones

being slowly taken from you.

>

> My husband started showing signs that something was wrong in 1992,

at age 62. At first he just seemed to slow down and was sleepy a

lot. He had some hallucinations, mostly shadowy people around the

house or on street corners. His doctor thought it was depression and

treated him with Zoloft, which didn't seem to have much effect. By

1994, our employees were calling me to tell me they were worried

about him. He would drive to our business and take a nap in the car

before going in. Our manager said he was having difficulty making

the everyday decisions, and had turned more and more over to her.

The doctors ran all kinds of tests -- CAT scan, MRI, etc. -- to rule

out whatever they could, and finally diagnosed Parkinson's. He had

the some trouble with walking and his voice was softer, but he didn't

have the Parkinson's tremor. They started him on Sinemet and we

started to realize we needed to think about selling the business. He

became weaker and slower and had some trouble with balance.

>

> In 1996 we sold the business and moved to Fort , Colorado,

where we could be near more of our family. could hardly help

with the packing, and I began to realize what stress can do to

someone with this disorder. I sat him down with a small desk drawer

and a box and asked him to sort the contents and pack what he was

keeping. When I checked back in two hours, he hadn't gotten through

more than half the drawer!

>

> The neurologist here in Fort prescribed Mirapex, which I

felt was a miracle drug. was able to concentrate again, and he

regained his strength. Somewhere along the line the neurologist

switched him from regular Sinemet to Sinemet CR (controlled

release). He did pretty well until fall of 1999. At that point, his

neurologist decided to increase his Parkinson's meds. First he

increased the Mirapex. became like a zombie. He couldn't think

or talk and he could hardly move. I took him back to the previous

dosage and he seemed to recover. The neurologist wasn't pleased with

me, and tried putting back on regular Sinemet, every three

hours, six times a day. Again, had a terrible reaction. I took

him back to his regular dosage and decided to find a different

neurologist. I learned about the Colorado Neurological Institute

through our Parkinson's support group and contacted Dr.

Seeberger there. We had to wait four months to see her, but it is

worth it. Before we got to see her, started showing real signs

of cognitive deterioration. He had vivid hallucinations, too. He

was sure he had seen jeeps drive into the pond we share with two

neighbors and wanted me to go ask the neighbors about it. When I

wouldn't, he dressed himself one morning and went over. Luckily, we

are blessed with wonderful neighbors, who called me. I went over and

found that he now realized there hadn't been any jeeps, but had

put his pants on backwards! (I do allow myself to laugh about some

of the things we go through. It helps. When possible, and when it

won't hurt his pride, I encourage to laugh with me.)

>

> We got to Dr. Seeburger and she ran some tests to rule out other

possible conditions and diagnosed Lewy Body Disease. That was in

November 1999. I immediately went to the web to try to find out

anything I could and found the Lewy Net site. I cried. I grieved.

We put on Aricept and it stopped his hallucinations. After

about 6 months, I started to notice his cognitive skills were

slipping more and he was starting to have hallucinations again. We

increased the Aricept to 10mg. He's just now starting to have

hallucinations again. He forgets words and conversations are

sometimes like a game, where I try to guess from the context just

what he really means. He can't manage dialing the phone or using the

remote control for the TV. He still likes watching movies, but needs

straight forward plots. He needs help with bathing, toileting,

dressing, shaving, etc. Still, he is determined he is going to beat

this. He reads the paper for any articles about Parkinson's or

Alzheimer's (He figures whatever helps fight Alzheimer's is bound to

help him, too.) He can't always understand what he has read, but he

is willing to ask for help. That makes it easier.

>

> The hardest part for me is just not knowing what's next. I'm about

20 years younger than , and still working. I have found a

wonderful counselor and am on Celexa, which helps me cope. I had

found that I cried all the time and just couldn't concentrate. As

has gotten worse, he needs more and more attention. I'm

fortunate to have found a live-in home care aide. She keeps on

a regular schedule, which really helps. They do an exercise program

everyday (there are lots of good references on exercises in the

literature from the National Parkinson's Foundation) and she gets him

out to run errands and go to movies. He is doing much better than

when he would sit and sleep while I worked.

>

> forgive me for being so long winded. It helps to know there are

others who know what this is like. I have felt so alone, until I

found Cheryl on the WebOfCare site. Bust this is the first LBD

discussion group I've found. It seems like almost nobody, even

doctors, know much, if anything, about this disease. Thank you all

for being willing to share.

>

[Guest guest]

, my heart goes out to you and your mom to be dealing with this awful

disease. And to your dad, too. It is hard on the patient as well, as they

occasionally recognize what is happening to them.

What to expect is SO varied. Some go downhill very rapidly. Some lose

cognitive ability very soon. Some do not. Some live a long time in

relatively good state. The " what " varies so much by individual. The only

thing to expect from this disease for sure is that it plays by no one's rules

- no even its own.

I feel for your mom. Any chance she would hook up with this site?

All the best, and please stay with us. You will find it very beneficial.

Cheryl

[Guest guest]

Expect maximum amounts of frustration when your Father

refuses to believe the hallucinations are not real; anticipate

the time when paranoia makes him distrustful of everyone;

encourage all forms of exercise, even if he didn't before;

Find a medical doctor that already treats LBD, Parkinsons etc

that will be able to distinguish the fine points between

the diseases....Probably the best thing you could do, is

to " take over " for your mom one or two days a week

and make sure she leaves town or swap houses with her

so she can keep her sanity in the long run. It gets worse,

and the patient can become rather abusive...I hear

from the doctor(s) that most elderly care givers don't

survive the patient. Take care of your mom! Good luck.

Pat

rskamaro wrote:

> I'm new to this group. My Father has been diagnosed with Shy-

> Dragers, but I really believe that he has LBD. I read an article to

> my Mom and she agrees (she, of course, spends the time with him,

> although I do help out as much as I can and will more since I have

> started to work half days). I would really like some input on what

> to expect. He has really started (in the last few months) to do

> strange things, like, waking up a 3am to go to work at 8am. He

> visualizes things, like a little girl standing next to him and my Mom

> sayes that there was nothing there. And he bumped his head on the

> mantle which he knew was there and never had done anything like that

> (or to that degree, he wacked himself pretty good!). I guess the

> biggest thing to me is I can't stand to hurt my Father (his ego).

> Are there any easy way around typical situations? or difficult

> situations? (yes, I know it sounds like I want my cake and eat it

> too). Is exercise a big thing? Or him just doing what he always has

> done is enough? Or should I have him search for items in the mall

> with me? I have read the last postings and my Mom is at her wits end

> too. What can I do for her? Thanks so much for taking the time to

> hear me rant and rave! My Fathers' daughter,

>

>

>

[Guest guest]

Hi there Giant Stark.

Do you have a real name?

Welcome to the group,

Susie

HELLO GROUP!

[Guest guest]

Ok ,

My mother always said " If you haven't got anything nice to say don't say

anything at all " I think she was right.

GINI

-- HELLO

HELLO GROUP!

[Guest guest]

Hey Welcome, Sorry I may have sent you the wrong email. So Sorry.

GINI

-- HELLO

HELLO GROUP!

[Guest guest]

First off I would like to say hello to all the members of the group. Thank you

for having me...

Thanks for the Birthday Card too. It was much appreciated.

Just to give everyone a quick rundown on my life, it's fairly complicated, so

this is just the bare basics...

Over the past two and a half years I think I have been to hell and back. My ex

husband put me there to start with, abuse - mental and physical, which totally

wrecked me and my three children. I have three children, two to a previous

relationship, and the 4yo is from my previous marriage. I separated finally

after my ex belting my mother up. I have to say, even to myself, I think I

handled things fairly good in the first two weeks, and for the next two months I

was on my own as my parents went on vacation.

The kids and I battled on fairly well. I have to admit here, I was drinking

every day though, and often relied on my daughter to help me. But I made it

without going back to my ex despite all the phone calls and the shit that went

on.

It was 6 weeks after that I met a man on the internet. We became chat partners

and we both knew so much about each other, that when we finally met, things just

clicked together. In October 2000 I had a hysterectomy, was majorly sick for

three months, followed by another operation in March 2001. We moved in together

just after my first operation and things were great. His support and love got

me through heaps.

During May 2001 I lost a dear friend, she was like a mother to me, and I did

everything I had to there. But 17 days later I buried her husband. It was a

rotten month, because even during all this I was fighting for custody of my son,

as was my new partner fighting to see his daughter. June was horrific, and July

was full on court cases. We spent three months traveling back and forth seeing

his chid, while our lives got more complicated.

By November 2001 I was diagnoised with depression. I stayed on the tablets for

4 months but I jut put on so much weight with them, I felt worse. I felt better

and was quite active after that, but sometime during the year, I seemed to have

lost the plot again. I'm not sure how and I'm not sure where. But it happened.

I joined the group because the Natropath I was seeing stated that my negativity

was destroying me completely. But I could find a way out. I have now been

diagnoised as having Chronic Fatigue Syndrome by the doctors, and I know this to

be true as the Natropath said the same thing. Although she believes it's more

long term than what I realise.

Basically until today I have been in a dark void. I'm not sure if this makes

sense to anyone. I ache 95% of the time in all my joints and muscles, and the

headaches are murderous. I can't settle on anything and my moods swings are

chronic.

But this morning when I got out of bed and logged on to flick through my emails,

one caught my eye. It was about 4 ways to reduce stress now. I don't know the

person that wrote it or sent it in, but to that person you have changed my life

today. And for that I can't thank you enough.

Today started out fairly normal, me feeling empty, to reading that email, and

I've been working hard all day finishing up jobs that should have been done 18

months ago. Painting, shampooing carpets, washing walls, curtains, I have been

so busy. I ache, yes, but it's a different ache. For that I am thankful.

I try to read as much as I can of the posts. Some I don't understand, or I find

I lose my thoughts during it, but some just seem to connect with me.

So there's a little about me, my life, and my health. Not quite a complete

disaster, but close.

So thanks for having me, and to know that although I don't post much, I'm

learning through your words.

Thank you...

Cheryl

[Guest guest]

Hi Rachi,

When we grow up under an abusive parent, we learn that love is being

abused and that is how we define it. So, when we get married, we

telepathically command the one we love to love us in the same way. It is

a difficult catch 22 to remove, but it is possible.

There are other reasons that one is abused and that is guilt. Our

subconscious has a whole long list of things that are good, bad, right

and wrong and whenever we do anything that matches the wrong or bad

list, it automatically requests punishment and those who love us the

most will punish us the most. Guilt is cumulative and so it may take a

while for it to reach the point of corporal punishment or being

physically abused.

Since this group is into affirmations, I suggest you write the following

affirmations 70 times a day for 7 days with the response columns and

breathing at the same time. A response column is what we think after

saying or writing an affirmation. LIke saying, " I am a millionaire " the

response is " No, I'm not, I owe more than I can pay. If one does not

express the response columns, they will manifest big time. I know as I

did experiments on affirmations in the 80's and it is amazing how

powerful they are.

The affirmations are:

I FORGIVE MYSELF FOR EVERYTHING.

I AM INNOCENT.

I AM FORGIVEN.

I COMPARE EVERYTHING ONLY TO ITSELF.

I AM FREE FROM JUDGMENT.

EVERYTHING IS PERFECT AND SO IS EVERYTHING ELSE.

I AM OVERFLOWING WITH LOVE AND MONEY.

I AM WITHOUT FEAR.

WHATEVER I CONSCIOUSLY REQUEST MANIFESTS INSTANTLY.

MY LIFE EXPERIENCE ON EARTH IS ONE OF EASE AND JOY.

I love myself unconditionally.

Everyone loves me unconditionally by nurturing me and healing me.

I am very valuable

I am someone.

All requests for punishment have been permanently canceled.

It is prohibited for me to be judged.

I am perfect just as I am.

You can also go to the following web page and follow the instructions

there as these programs will work faster than affirmations.

http://home.inreach.com/joybook/ex.html

Also, I suggest that you resolve the abuse problem before you cohabitate

with your new man. Be patient and also let him know that until it is

healed within you, he could find himself bashing you.

When one has sex with another, they give them 50% of their power. This

can add up if one has had more than one sex partner and can be a major

problem if the one that abused you still has some of your power. Of

course, you ahve 50 % of their power. I suggest you make a command: I

command that all of my power that I have given to others through sex is

restored to me immediatley and permanently.

I personally do not use affirmations anymore as I have found writing and

signing laws so much easier and more effective. Not everyone can do

laws, so if they do not interest you, forget it. If they do interest

you, I suggest you go to

http://home.inreach.com/joybook/lawsgod.html , print them out, write

your names at the top, sign and date them.

Blessings,

Prem Raja Baba

http://home.inreach.com/joybook/

http://home.inreach.com/joybook/godbook.html

http://home.inreach.com/joybook/lawsgod.html

[Guest guest]

Wow thank you for these I am printing this out thank you for this email..

hugs

Rachi

Re: Hello

Hi Rachi,

When we grow up under an abusive parent, we learn that love is being

abused and that is how we define it. So, when we get married, we

telepathically command the one we love to love us in the same way. It is

a difficult catch 22 to remove, but it is possible.

There are other reasons that one is abused and that is guilt. Our

subconscious has a whole long list of things that are good, bad, right

and wrong and whenever we do anything that matches the wrong or bad

list, it automatically requests punishment and those who love us the

most will punish us the most. Guilt is cumulative and so it may take a

while for it to reach the point of corporal punishment or being

physically abused.

Since this group is into affirmations, I suggest you write the following

affirmations 70 times a day for 7 days with the response columns and

breathing at the same time. A response column is what we think after

saying or writing an affirmation. LIke saying, " I am a millionaire " the

response is " No, I'm not, I owe more than I can pay. If one does not

express the response columns, they will manifest big time. I know as I

did experiments on affirmations in the 80's and it is amazing how

powerful they are.

The affirmations are:

I FORGIVE MYSELF FOR EVERYTHING.

I AM INNOCENT.

I AM FORGIVEN.

I COMPARE EVERYTHING ONLY TO ITSELF.

I AM FREE FROM JUDGMENT.

EVERYTHING IS PERFECT AND SO IS EVERYTHING ELSE.

I AM OVERFLOWING WITH LOVE AND MONEY.

I AM WITHOUT FEAR.

WHATEVER I CONSCIOUSLY REQUEST MANIFESTS INSTANTLY.

MY LIFE EXPERIENCE ON EARTH IS ONE OF EASE AND JOY.

I love myself unconditionally.

Everyone loves me unconditionally by nurturing me and healing me.

I am very valuable

I am someone.

All requests for punishment have been permanently canceled.

It is prohibited for me to be judged.

I am perfect just as I am.

You can also go to the following web page and follow the instructions

there as these programs will work faster than affirmations.

http://home.inreach.com/joybook/ex.html

Also, I suggest that you resolve the abuse problem before you cohabitate

with your new man. Be patient and also let him know that until it is

healed within you, he could find himself bashing you.

When one has sex with another, they give them 50% of their power. This

can add up if one has had more than one sex partner and can be a major

problem if the one that abused you still has some of your power. Of

course, you ahve 50 % of their power. I suggest you make a command: I

command that all of my power that I have given to others through sex is

restored to me immediatley and permanently.

I personally do not use affirmations anymore as I have found writing and

signing laws so much easier and more effective. Not everyone can do

laws, so if they do not interest you, forget it. If they do interest

you, I suggest you go to

http://home.inreach.com/joybook/lawsgod.html , print them out, write

your names at the top, sign and date them.

Blessings,

Prem Raja Baba

http://home.inreach.com/joybook/

http://home.inreach.com/joybook/godbook.html

http://home.inreach.com/joybook/lawsgod.html

[Guest guest]

I use amazing charts. I am pleased with it. Mainly for the cost. It would

be nice if it did a complete chart. For now, I keep an electronic chart of

non-note paperwork.

We do our own billing through Medrium. But my wife is a very fine

businesswoman. Without her, I would also use a billing service. Doing it

ourselves does have some pluses, we get immediate feedback on miscodes and

payment problems.

TAS

new practice

> >

> > ===8<==============Original message text===============

> >

> > hello!

> > I have been lurking for a few weeks.

> > I am in the western mountians of Maine currently

> in

> > a not- working- out- although -she- recruited- me -

> partnership . I

> > will be opening a Gordon model practice in May or June

> just

> > me.

> > Am nervously hoping I have found a space- two rooms in a hospital

> > owned vacant docotr's office .Hospital with lab and xray across

> > street.I will feel better when that is settled today there was

> a

> > snafu. sigh.

> > I think with used equipment and minimal stuff to start I can

> open

> > for $8,000 or so from savings Fortunately being a partner not

> now

> > on salary and due to the awful way health care pays claims, I

> will

> > be getting income from my current practice for 6 months after I

> > leave plus I continue to precept at my own residency-Maine

> Dartmouth

> > in Augusta Me , for cash flow. I did a fellowship in teaching at

> > Chapel Hill and thoguh academia wasnt for me of course we all

> > teach all the time .I get a lot of satisfaction when patietns

> say "

> > no one ever explained it to me like that! "

> > I have been doing and just loving open access for a year - what

> a

> > hoot it is to offer that!Patients are SO pleased!I tell them "

> well,

> > it's a radical idea . It's called be nice to the patient "

> > So .I am terrified and nervous about exactly how things will

> go-

> > I will have one laptop and am still looking at emrs-I like

> Welford

> > chart notes alot maybe Amazing charts also patient minder and

> > health Probe are still in the running . I think for now I will

> > outsource billing .I live in a very poor state so i feel an

> > obligation to take at least some medicaid and also medicare and

> > will do blue cross/anthem non-hmos.

> > I have learned alot from reading the archives here- only

> message

> > 1850--2000 haven't been read yet! To Gordon ( L Gordon I see..

> has

> > there been full disclosure here?? smile) and the minteks and

> josie

> > and michele and larry lyons and brenthabik I feel as if I know

> > you all Will keep you posted!

> >

> > Jean

> >

> >

> >

> > ===8<===========End of original message text===========

> >

> >

> >

> > --

> > Best regards,

> > mailto:jantonucci.rockomeka@a...

>

>

>

>

>

>

>

>