Re: I'm new

[Guest guest]

Welcome to the board Dolores. You'll find all kinds of useful info

here and it sounds like you will be able to provide us with lots of

useful info and advice - with all your experience. I'm glad you found

us. Besure to check out the website (you can get to it via the link

within my signature) - there are Files, Links, Photos, Databases

galore.

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy) and as of 4/21 on Exelon.

Visit the LBDCaregivers board on the web:

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

(See files, databases, photos of members, and search previous posts)

>

> Hello,

>

> My name is Dolores, I am care giver to my 89 year old mother

Angelina. In 1988, I left my job in New York and moved to Florida to

share a home with my mother. My mother was 79 at the time, she

supervised the construction of a new home while I remained in New

York until the home was ready to move in. We have since moved three

times, each time to a bigger and better home. My mother drove,

cooked, cleaned, kept her check book...did all of the things that an

active senior citizen should do. While she was still driving she was

involved in an automobile accident which resulted in her breaking her

neck (C-2 fracture), she voluntarily stopped driving after the

accident. Miraculously she had just read an article about how the

seat belt throws you forward and then snaps you back and breaks your

neck. She felt a burn and knew her neck was broken, she remained

very still until the ambulance arrived. Thank God she had the

presence of mind to do that, she was not paralyzed. The next year

she broke her arm, which required surgery...she did well with that

too.

>

> Sometime after the broken arm she began having what I called

tantrums. She would yell, scream, kick her feet, throw things and

accuse me of horrible things. In 1998 we had terrible fire storms in

the area of Florida where we live, we had to evacuate three times in

less than one month. Her behavior was diagnosed as post traumatic

stress. She was tested for Alzheimers and found not to have it.

>

> She began to be quite nasty to my two daughters, and would make a

fuss every time I went out. When my friends would come to visit she

would make nasty comments to them and pretend she was joking...about

me.

>

> I have Miniature Schnauzers, who keep me sane. I love my dogs and

will not part with them....although Mom would love it if they were

gone. She makes nasty comments about the dogs, won't let them into

the main part of the house....they are relegated to the sun room.

This is my home but I allow her to tell me where the dogs can

go...just for the sake of peace.

>

> In August of 2004, I came home from a doctor appointment to find

Mom standing in the living room looking completely dazed and

confused. I asked her if she had eaten any breakfast, she said no.

I made her breakfast and she sat there staring at the dish...I had to

tell her to put the spoon in her mouth. This behavior lasted for all

of five minutes before I dialed 911. When the paramedics arrived

they immediately took her to the hospital. She had a UTI that had

become septic and gone through her body. She was delirious, did not

know where she was, screaming that someone was trying to rape and

kill her. She could not say my name, but she did recognize me and

would spell my name. She told me that if I knew who my " real father "

was I would be very angry with her. Two days later she told me who

my " real father " was.....my father...the only father I had ever

known...she was so very confused.

>

> She was released from the hospital after 21 days and sent to a

nursing home. She called me every few minutes at home to tell me to

come and get her out of there. Hurricane Charlie came through our

town and I took her from the nursing home and we went north. I

decided to take her to New York, where we have family in the medical

profession. During the trip, she kept complaining about the staff at

the nursing home (she did not know that we were in a motel) She

complained about the food, the nursing staff, etc. all of them were

me.

>

> After seeing several gerontologists, neurologists and other experts

she was diagnosed with Lewy Body. She has been on Aricept, Seroquel,

and Zoloft for almost two years now. There are times when she is

quite violent. Then she goes back to being sweet. She sleeps a

great deal, has lost weight even though she eats well. She has

absolutely no recollection of being in the hospital or the nursing

home.

>

> If Mom forgets something and I tell her that she has forgotten she

gets really nasty. She worries about money and behaves as if we are

going to be thrown into the streets any moment now. I think that is

because she was so very poor as a child.

>

> About me: In March of 2002 I had emergency open heart surgery,

August 2002 involved in an auto accident caused by a drunk

driver....destroyed three discs in my lower back, August 2003 back

surgery to fuse four discs, September 2003 staph infection requiring

a pic-line to my vena cava and antibiotic for twelve long weeks, 2006

pneumonia, flu, heart failure, diabetes, arthritis, fibromyalgia to

mention just a few. In other words....I've seen better days. LOL

>

> I'm sorry to ramble on so. I just wanted to let you all know a

little about Mom & me.

>

> Dolores

>

[Guest guest]

Dolores, how in the world do you cope? But, dear lady welcome to the not

wanted by any, but glad for it after all, List.

I don't see how in the world you cope with anything including your own

health, much less anyone else's.

Maybe some one has asked but I will ask, and if you have answered in the

past then

not to worry about answering again. But, what part of Florida do you live

in? I am from Florida. SW Coast, Ft. Myers area, mainly the surrounding

Islands.

Imogene

In a message dated 7/2/2006 11:29:18 PM Central Daylight Time,

havanese1@... writes:

Hello,

My name is Dolores, I am care giver to my 89 year old mother Angelina. In

1988, I left my job in New York and moved to Florida to share a home with my

mother. My mother was 79 at the time, she supervised the construction of a

new home while I remained in New York until the home was ready to move in. We

have since moved three times, each time to a bigger and better home. My

mother drove, cooked, cleaned, kept her check book...did all of the things that

an active senior citizen should do. While she was still driving she was

involved in an automobile accident which resulted in her breaking her neck (C-2

fracture), she voluntarily stopped driving after the accident. Miraculously

she had just read an article about how the seat belt throws you forward and

then snaps you back and breaks your neck. She felt a burn and knew her neck

was

broken, she remained very still until the ambulance arrived. Thank God she

had the presence of mind to do that, she was not paralyzed. The next year

she broke her arm, which required surgery...she did well with that too.

Sometime after the broken arm she began having what I called tantrums. She

would yell, scream, kick her feet, throw things and accuse me of horrible

things. In 1998 we had terrible fire storms in the area of Florida where we

live, we had to evacuate three times in less than one month. Her behavior was

diagnosed as post traumatic stress. She was tested for Alzheimers and found

not to have it.

She began to be quite nasty to my two daughters, and would make a fuss every

time I went out. When my friends would come to visit she would make nasty

comments to them and pretend she was joking...about me.

I have Miniature Schnauzers, who keep me sane. I love my dogs and will not

part with them....although Mom would love it if they were gone. She makes

nasty comments about the dogs, won't let them into the main part of the

house....they are relegated to the sun room. This is my home but I allow her

to

tell me where the dogs can go...just for the sake of peace.

In August of 2004, I came home from a doctor appointment to find Mom

standing in the living room looking completely dazed and confused. I asked her

if

she had eaten any breakfast, she said no. I made her breakfast and she sat

there staring at the dish...I had to tell her to put the spoon in her mouth.

This behavior lasted for all of five minutes before I dialed 911. When the

paramedics arrived they immediately took her to the hospital. She had a UTI

that had become septic and gone through her body. She was delirious, did not

know where she was, screaming that someone was trying to rape and kill her.

She could not say my name, but she did recognize me and would spell my name.

She told me that if I knew who my " real father " was I would be very angry

with her. Two days later she told me who my " real father " was.....my

father...the only father I had ever known...she was so very confused.

She was released from the hospital after 21 days and sent to a nursing home.

She called me every few minutes at home to tell me to come and get her out

of there. Hurricane Charlie came through our town and I took her from the

nursing home and we went north. I decided to take her to New York, where we

have family in the medical profession. During the trip, she kept complaining

about the staff at the nursing home (she did not know that we were in a

motel) She complained about the food, the nursing staff, etc. all of them

were

me.

After seeing several gerontologists, neurologists and other experts she was

diagnosed with Lewy Body. She has been on Aricept, Seroquel, and Zoloft for

almost two years now. There are times when she is quite violent. Then she

goes back to being sweet. She sleeps a great deal, has lost weight even

though she eats well. She has absolutely no recollection of being in the

hospital

or the nursing home.

If Mom forgets something and I tell her that she has forgotten she gets

really nasty. She worries about money and behaves as if we are going to be

thrown into the streets any moment now. I think that is because she was so

very

poor as a child.

About me: In March of 2002 I had emergency open heart surgery, August 2002

involved in an auto accident caused by a drunk driver....destroyed three

discs in my lower back, August 2003 back surgery to fuse four discs, September

2003 staph infection requiring a pic-line to my vena cava and antibiotic for

twelve long weeks, 2006 pneumonia, flu, heart failure, diabetes, arthritis,

fibromyalgia to mention just a few. In other words....I've seen better days.

LOL

I'm sorry to ramble on so. I just wanted to let you all know a little about

Mom & me.

Dolores

[Guest guest]

Imogene,

Sorry for the delay in answering. I actually had a night out! On the 4th a

friend of mine took me out to have a bite to eat and then we went to watch the

fireworks. It was a great evening. Mom was in good shape and was thrilled that

I was going to have a night out. She reheated her dinner in the nuker and let

my dogs out on time. She watched fireworks on tv and was in great shape when I

arrived back home at eleven. Of course, the fact that her hero was on tv

hosting a special from DC helped tremendously. She LOVES Dr. Phil. She watches

him twice a day and sometimes watches Oprah twice in a day. She doesn't

remember that she has already seen the show four times.

I live in Oviedo, which is just north and east of Orlando. I can be in downtown

Orlando in about ten minutes from my house. It is a small town which is growing

very quickly. I decided to move here when I had the staph infection. We lived

in Flagler Beach at the time and there were no infectious disease doctors over

there who would care for me. My best friend of 47 years lives in Oviedo and I

stayed with her while I was being treated for the staph. The longer I was here

the more I grew to love this town. In the old part of town there are chickens

that roam the streets. They are a fixture here and the local merchants feed

them. There are even bumper stickers that say " I brake for Oviedo chickens. "

I am becoming more concerned with my health lately, I think I have Cushings. At

least I have all of the symptoms. I have made an appointment with a new

endochronologist and I will ask to be tested. My diabetes has been out of

control lately. I eat a well balanced diet, and have for the twenty plus years

that I have been diabetic. I managed to keep it diet controlled for almost

fifteen of those years. My current doctor has dropped the ball and I am not

happy. He doesn't think I should be that concerned about my erratic blood

sugars. They keep getting higher and higher no matter what I do. My best

friend and heart sister, Carol, was watching Discovery Health and saw a piece on

Cushings, she called to tell me she thought I should check it out. When I went

through the symptoms I had 12 of the 16 symptoms. I have been feeling really

terrible lately, I've gained 30lbs in six months. I can't sleep, don't eat

because when I do I wind up in the bathroom almost immediately. I live on

Immodium! Anyway, I intend to get to the bottom of this.

Mom just came in to tell me that she doesn't think we can afford to stay here,

after all we are about to be penniless. How do I deal with this? I assure her

every day that we can afford to live here and we are not about to be penniless.

We are far from wealthy, but we are living within our means. She just does not

believe me. Sometimes we get into an argument about it. Today I just asked her

to please not get into it, because we are fine. She did walk away, mumbling, so

I'm sure we will re-visit this later.

She also told me this morning that she is 'TAKING NO MORE MEDICINE! " because

that is what is giving her nightmares. So before the day is over, we will have

to deal with that. I am the type of person who has always met things head on,

but lately I am becoming quite adept at side stepping things until she forgets

about them. It has taken me a while to realize that I am not going to get a

rational answer from her. That really used to bother me, because she is such an

intelligent woman. It is difficult to finally accept that although she looks

like my mother, she really is not the same person anymore.

Thank you for taking the time to care about me when you have so much on your

plate right now. Please take some time to rest when your husband is resting.

Try to do something nice for yourself.

I am so happy to be a part of the " not wanted by any, but glad for it after all,

List. "

Dolores

>

> From: Iward27663@...

> Date: 2006/07/04 Tue AM 06:47:50 EDT

> To: LBDcaregivers

> Subject: Re: I'm new

>

>

>

> Dolores, how in the world do you cope? But, dear lady welcome to the not

> wanted by any, but glad for it after all, List.

>

> I don't see how in the world you cope with anything including your own

> health, much less anyone else's.

>

> Maybe some one has asked but I will ask, and if you have answered in the

> past then

> not to worry about answering again. But, what part of Florida do you live

> in? I am from Florida. SW Coast, Ft. Myers area, mainly the surrounding

Islands.

>

> Imogene

>

>

> In a message dated 7/2/2006 11:29:18 PM Central Daylight Time,

> havanese1@... writes:

>

> Hello,

>

> My name is Dolores, I am care giver to my 89 year old mother Angelina. In

> 1988, I left my job in New York and moved to Florida to share a home with my

> mother. My mother was 79 at the time, she supervised the construction of a

> new home while I remained in New York until the home was ready to move in.

We

> have since moved three times, each time to a bigger and better home. My

> mother drove, cooked, cleaned, kept her check book...did all of the things

that

> an active senior citizen should do. While she was still driving she was

> involved in an automobile accident which resulted in her breaking her neck

(C-2

> fracture), she voluntarily stopped driving after the accident. Miraculously

> she had just read an article about how the seat belt throws you forward and

> then snaps you back and breaks your neck. She felt a burn and knew her neck

was

> broken, she remained very still until the ambulance arrived. Thank God she

> had the presence of mind to do that, she was not paralyzed. The next year

> she broke her arm, which required surgery...she did well with that too.

>

> Sometime after the broken arm she began having what I called tantrums. She

> would yell, scream, kick her feet, throw things and accuse me of horrible

> things. In 1998 we had terrible fire storms in the area of Florida where we

> live, we had to evacuate three times in less than one month. Her behavior

was

> diagnosed as post traumatic stress. She was tested for Alzheimers and found

> not to have it.

>

> She began to be quite nasty to my two daughters, and would make a fuss every

> time I went out. When my friends would come to visit she would make nasty

> comments to them and pretend she was joking...about me.

>

> I have Miniature Schnauzers, who keep me sane. I love my dogs and will not

> part with them....although Mom would love it if they were gone. She makes

> nasty comments about the dogs, won't let them into the main part of the

> house....they are relegated to the sun room. This is my home but I allow her

to

> tell me where the dogs can go...just for the sake of peace.

>

> In August of 2004, I came home from a doctor appointment to find Mom

> standing in the living room looking completely dazed and confused. I asked

her if

> she had eaten any breakfast, she said no. I made her breakfast and she sat

> there staring at the dish...I had to tell her to put the spoon in her mouth.

> This behavior lasted for all of five minutes before I dialed 911. When the

> paramedics arrived they immediately took her to the hospital. She had a UTI

> that had become septic and gone through her body. She was delirious, did not

> know where she was, screaming that someone was trying to rape and kill her.

> She could not say my name, but she did recognize me and would spell my name.

> She told me that if I knew who my " real father " was I would be very angry

> with her. Two days later she told me who my " real father " was.....my

> father...the only father I had ever known...she was so very confused.

>

> She was released from the hospital after 21 days and sent to a nursing home.

> She called me every few minutes at home to tell me to come and get her out

> of there. Hurricane Charlie came through our town and I took her from the

> nursing home and we went north. I decided to take her to New York, where we

> have family in the medical profession. During the trip, she kept complaining

> about the staff at the nursing home (she did not know that we were in a

> motel) She complained about the food, the nursing staff, etc. all of them

were

> me.

>

> After seeing several gerontologists, neurologists and other experts she was

> diagnosed with Lewy Body. She has been on Aricept, Seroquel, and Zoloft for

> almost two years now. There are times when she is quite violent. Then she

> goes back to being sweet. She sleeps a great deal, has lost weight even

> though she eats well. She has absolutely no recollection of being in the

hospital

> or the nursing home.

>

> If Mom forgets something and I tell her that she has forgotten she gets

> really nasty. She worries about money and behaves as if we are going to be

> thrown into the streets any moment now. I think that is because she was so

very

> poor as a child.

>

> About me: In March of 2002 I had emergency open heart surgery, August 2002

> involved in an auto accident caused by a drunk driver....destroyed three

> discs in my lower back, August 2003 back surgery to fuse four discs,

September

> 2003 staph infection requiring a pic-line to my vena cava and antibiotic for

> twelve long weeks, 2006 pneumonia, flu, heart failure, diabetes, arthritis,

> fibromyalgia to mention just a few. In other words....I've seen better days.

> LOL

>

> I'm sorry to ramble on so. I just wanted to let you all know a little about

> Mom & me.

>

> Dolores

>

>

>

>

>

>

>

>

[Guest guest]

I'm sure one of the first things they will tell you

is to clean up the diet totally, before they will

move on to other things....

Kaley wrote:

>

> Hello Everyone!

>

> I'm new to the group. My son is 19mos., and is displaying signs of

autism (poor eye contact, nonverbal, tip toeing, clapping). I'm

working on getting him to a DAN doctor. It's harder than it seems.

>

> Is anyone in the Chicago area? I have an appointment scheduled at

the end of the month with a dr in Northbrook, but I wanted to go to

the dr in Naperville. Naperville Dr's waiting list was " closed, " but

they would maybe get me into the 'jump start program.'  Anyone have

suggestions while I feel like I'm just sitting around waiting?

>

> I also started tx with the IL early intervention program, doing OT,

DT, and Speech.  I have started the diet - milk is gone but the only

meat my son eats is Tyson chicken nuggest - so he still has some

gluten. He also doesn't eat anything with a " wet " feel to it, like

fruits, vegs, noodles, etc.

>

> Maybe I'm impatient, but I wish I could do more NOW.

>

> Thanks.

> -

>

[Guest guest]

you will have to get the gluten out for him to accept new textures. my son wouldn't touch anything wet either until gluten, casien and soy where out then he ate anything we put in front of him

Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwisheshttp://www.facebook.com/profile.php?id=677063169

I'm new

Hello Everyone!

I'm new to the group. My son is 19mos., and is displaying signs of autism (poor eye contact, nonverbal, tip toeing, clapping). I'm working on getting him to a DAN doctor. It's harder than it seems.

Is anyone in the Chicago area? I have an appointment scheduled at the end of the month with a dr in Northbrook, but I wanted to go to the dr in Naperville. Naperville Dr's waiting list was "closed," but they would maybe get me into the 'jump start program.' Anyone have suggestions while I feel like I'm just sitting around waiting?

I also started tx with the IL early intervention program, doing OT, DT, and Speech. I have started the diet - milk is gone but the only meat my son eats is Tyson chicken nuggest - so he still has some gluten. He also doesn't eat anything with a "wet" feel to it, like fruits, vegs, noodles, etc.

Maybe I'm impatient, but I wish I could do more NOW.

Thanks.

-

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.175 / Virus Database: 270.9.1/1781 - Release Date: 11/11/2008 8:59 AM

[Guest guest]

My son is GF CF and soy free. Still won't touch wet mushy and many other things. Any tips? Sent via BlackBerry by AT&TDate: Tue, 11 Nov 2008 16:53:52 -0500To: <mb12 valtrex >Subject: Re: I'm new you will have to get the gluten out for him to accept new textures. my son wouldn't touch anything wet either until gluten, casien and soy where out then he ate anything we put in front of him Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwisheshttp://www.facebook.com/profile.php?id=677063169 I'm new Hello Everyone! I'm new to the group. My son is 19mos., and is displaying signs of autism (poor eye contact, nonverbal, tip toeing, clapping). I'm working on getting him to a DAN doctor. It's harder than it seems. Is anyone in the Chicago area? I have an appointment scheduled at the end of the month with a dr in Northbrook, but I wanted to go to the dr in Naperville. Naperville Dr's waiting list was "closed," but they would maybe get me into the 'jump start program.' Anyone have suggestions while I feel like I'm just sitting around waiting? I also started tx with the IL early intervention program, doing OT, DT, and Speech. I have started the diet - milk is gone but the only meat my son eats is Tyson chicken nuggest - so he still has some gluten. He also doesn't eat anything with a "wet" feel to it, like fruits, vegs, noodles, etc. Maybe I'm impatient, but I wish I could do more NOW. Thanks. - No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.175 / Virus Database: 270.9.1/1781 - Release Date: 11/11/2008 8:59 AM

[Guest guest]

Hi ,

You are on the right track. Have you contacted a Rescue

Angel in your area? They may be able to help you out with local

resources. You can find one on the Generation Rescue website. www.generationrescue.org

Also remember that you do not have to find a DAN! doc in your

backyard. Many people travel long distances to see the right doc.

For example, we live in Virginia and our DAN! doc is in Florida.

You may also be interested in other Yahoo groups like

chelatingkids2 and GFCFkids.

Pamela

From: mb12 valtrex

[mailto:mb12 valtrex ] On Behalf Of Kaley

Sent: Tuesday, November 11, 2008 4:40 PM

To: mb12 valtrex

Subject: I'm new

Hello Everyone!

I'm new to the group. My son is 19mos., and is displaying signs of

autism (poor eye contact, nonverbal, tip toeing, clapping). I'm working on

getting him to a DAN doctor. It's harder than it seems.

Is anyone in the Chicago area? I have an appointment scheduled at

the end of the month with a dr in Northbrook, but I wanted to go to the dr in

Naperville. Naperville Dr's waiting list was " closed, " but they would

maybe get me into the 'jump start program.' Anyone have suggestions while

I feel like I'm just sitting around waiting?

I also started tx with the IL early intervention program, doing

OT, DT, and Speech. I have started the diet - milk is gone but the

only meat my son eats is Tyson chicken nuggest - so he still has some gluten.

He also doesn't eat anything with a " wet " feel to it, like

fruits, vegs, noodles, etc.

Maybe I'm impatient, but I wish I could do more NOW.

Thanks.

-

[Guest guest]

One thing we noticed was my son was low in zinc. Zinc is very important in

supporting oral motor issues. According to our DAN, she explained supplementing

would help. My son after 6 months of supplementing zinc was tolerating all

types of food.

One HUGE help - I bought a deep fryer and made chicken nuggets and fish sticks

for him at the beginning. Also there is a brand at Whole Foods called Bell and

in a black box that are gluten free. Also there are gluten free chicken

nuggets by Wellshire Farms that are gluten free.

That jump start sounds like a good way to get started. Ask if it includes

supplements, diet, and what other options.

Good luck!

Ali Hoffman

Sent from my iPhone

[Guest guest]

My little boy, Timmy age 4, has low zinc - the doctor just gave me a

huge list of things to add slowly but surely and one is zinc-- here

is " rx "

Low Zinc – add zinc picolinate – 20 mg once daily in AM, PLUS zinc

monomethionine 20 mg once daily in afternoon. After about 1 month of

these, cut these doses in half – 10 mg of each every day.

xo la True