new to group

[Guest guest]

Hi StPollys:

Welcome to the group. What part of the country are you from? It sounds

wonderful that you found a support group. My dad had LBD, but had a very late

diagnosis. He died a month after he started getting really sick. He was 89

years old.

You are in a very good group. The support level and knowledge are

extraordinary. I feel that I cannot give a lot of practical advice because my

experience with my dad, after he was diagnosed and treated was so short, that I

defer

to the more knowleageble members of the group, but I am here to give all the

support I can. My thoughts and prayers are with you, your husband and your

family, Josie

[Guest guest]

Hi Janet, Thank you for replying. My husband gets leg cramps, which the

doctor has given him muscle relaxers for, but the thrashing around could partly

be from sleep apnea. He wears a mask at night for that to help his breathing,

that is if I can get him to wear it all night. I am afraid he will get hurt

falling out of bed all the time. I have tried putting his mattress on the

floor, but he won't keep it there, also, he has back problems, so I really don't

have a solution. He seems to stare into space more than he used to, he really

isn't paying attention to the TV or his surroundings. So far he isn't

incontinent, and still takes care of his hygiene,although that is questionable,

I

don't think he is really taking a shower most of the time, and it's hard to get

him to shave. Thank you for a place to sound off stpollys

[Guest guest]

Hi Coyote, Thank you for the reply. My husband is 73 years old. He was

diagnosed about a year ago, but I am convinced he has had it at least three

years,

looking back at his behavior. It is wonderful to have this group that has

this disease in common to be able to relate to. It was a neurologist that

diagnosed him, but not one doctor seems to be able to answer all your questions,

so

it is good to have this group to compare notes with. Thank you for any input.

stpollys

[Guest guest]

Hi Josie, I am in Florida. My husband is 73. I am so surprised to hear

how young some people are who have this horrible disease. A woman in my

support group said her husband was 60 , and I thought that was young, but now

I'm

hearing as early as in the 40's, unbelievable!! Thank you for your reply,

Rita {stpollys}

[Guest guest]

Hi Rita:

I am in Florida also! I am in Miami, my dad was at Baptist Hosp. I am amazed

that you found a support group, is not specific for LBD, is it? Take care,

hugs, Josie

[Guest guest]

Hi Coyote, Sorry to confuse you, but my husband also is a borderline

diabetic, also has been told he has an enlarged prostate,and one of his kidneys

has

weakened, so, he has been to several doctors not related to LBD, but, when I

mention LBD to them, they won't even discuss it. I can't believe how many

doctors have never heard of LBD. In that respect, they only want to treat what

they specialize in. It just seems he is always going to the doctor for

something. Rita {stpollys}

[Guest guest]

Hi Josie, I specifically looked for an LBD support group. I was in this

group several months ago and one of the caregivers advised me to seek a spousal

support group, which I never could find, but now I'm seeing more spouses in

this group, so this is great for me. I live in West Palm Beach. How are you

holding up with the stress? Rita

[Guest guest]

Dear Rita: Your mom's case sounds more and more like my dad's. We had him

treated separatelly for each symptom. None of the drs got together to figure

out the whole person. Each was so concerned with his specialty. They were in

constant touch with each other, to make sure one treatment dis not interfere

with the other! I ended up making the group that was taking care of my dad go

and research LBD. It turned out that I had been the science teacher of the

brother of one of the drs! Once we made that connection, they started

listening! LOL! They never changed the dx from Alzheimer's disease, but were

treating

the disease as LBD and told the nurses to pay attention to me as far as

medicines were concerned. When we put my dad in Hospice care, things were even

better and more comfortable for him. Josie

[Guest guest]

Hi coyote, Yes I would like to e-mail your mom if she is willing. I go to a

support group in West Palm Beach. It is basically an Alzheimers group, but

there are about three of us who's husbands have LBD. It is a disease similar

but separate from Alz, so treatment is a little different, like, LBD patients

can't have the same meds as Alz patients, it works opposite for them. LBD

patients have symtoms of Parkinsons, The hallucinations start earlier, also the

REM sleep disorder is part of LBD. I'm learnig more and more about it, but it

doesn't lessen the stress. I think they both can take Aricept. God Bless you,

take care, Rita

[Guest guest]

Hi coyote, Yes I would like to e-mail your mom if she is willing. I go to a

support group in West Palm Beach. It is basically an Alzheimers group, but

there are about three of us who's husbands have LBD. It is a disease similar

but separate from Alz, so treatment is a little different, like, LBD patients

can't have the same meds as Alz patients, it works opposite for them. LBD

patients have symtoms of Parkinsons, The hallucinations start earlier, also the

REM sleep disorder is part of LBD. I'm learnig more and more about it, but it

doesn't lessen the stress. I think they both can take Aricept. God Bless you,

take care, Rita

[Guest guest]

Dear Rita:

My dad died on August 18th. We are doing ok. I had major changes to make at

home this past summer. My oldest daughter started college and is away. I

was supposed to rearrange everything in the house, clean out closets and really

change everything. My younger one went to summer camp and I was supposed to

fix her room and especially her closet, where she had saved her entire

childhood! None of that got done, and I am still trying to fix all the rooms at

once,

which makes a horrible mess. I feel I am going in 10 different directions

still. I did start on my daughter's closet yesterday, we took out 2 bags of

garbage -- she used to save all her papers from school -- and several bags of

toys, games, etc. She is still going though the boxes I took out of her closet

and we can hardly walk in her room, but the closet is neat now and I see the

improvement. She is 15 now, so she did not need to keep all this stuff. She is

learning to be organized and not a hoarder. OK, I am in the wrong group

taliking about this, but ever since my dad passed, it has been my obsession to

organize everything! I guess I want to get some control over things!!!

I am glad you have an LBD support group. They did not have one at Baptist.

This group was such a great help, though, and I can access it anytime, so I am

not bound to meeting times, etc. I guess you have the best of both. Let me

know how it is going with you and how you are getting along with the services

offered. take care, Josie

[Guest guest]

Dear Rita:

My dad died on August 18th. We are doing ok. I had major changes to make at

home this past summer. My oldest daughter started college and is away. I

was supposed to rearrange everything in the house, clean out closets and really

change everything. My younger one went to summer camp and I was supposed to

fix her room and especially her closet, where she had saved her entire

childhood! None of that got done, and I am still trying to fix all the rooms at

once,

which makes a horrible mess. I feel I am going in 10 different directions

still. I did start on my daughter's closet yesterday, we took out 2 bags of

garbage -- she used to save all her papers from school -- and several bags of

toys, games, etc. She is still going though the boxes I took out of her closet

and we can hardly walk in her room, but the closet is neat now and I see the

improvement. She is 15 now, so she did not need to keep all this stuff. She is

learning to be organized and not a hoarder. OK, I am in the wrong group

taliking about this, but ever since my dad passed, it has been my obsession to

organize everything! I guess I want to get some control over things!!!

I am glad you have an LBD support group. They did not have one at Baptist.

This group was such a great help, though, and I can access it anytime, so I am

not bound to meeting times, etc. I guess you have the best of both. Let me

know how it is going with you and how you are getting along with the services

offered. take care, Josie

[Guest guest]

Hi Josie, I think you are coping with your loss by keeping busy, so I think

that's a good thing. Just think, your dad is through with suffering, which

takes such a toll out of everyone, I'm sure your children has suffered the loss

also. I don't have any children at home any more, but I can sure relate to

your dilemma, When my daughters were still home, their rooms were a complete

disaster. I used to straighten up for them when they went to school, but, it

became so hopeless, I just closed their door and left it. LOL In spite of it,

I miss those days when they were all home. I have 5 children and the boys

seemed to be neater than the girls. I'm not a saver myself, since I can't stand

a lot of clutter, my husband is a saver and it drives me nuts You will get

through it, Josie, hang in there, We all seem to get past all of our lifes

trials and tribulations. Thank God!!! Bless you, Rita

[Guest guest]

Hi Josie, I think you are coping with your loss by keeping busy, so I think

that's a good thing. Just think, your dad is through with suffering, which

takes such a toll out of everyone, I'm sure your children has suffered the loss

also. I don't have any children at home any more, but I can sure relate to

your dilemma, When my daughters were still home, their rooms were a complete

disaster. I used to straighten up for them when they went to school, but, it

became so hopeless, I just closed their door and left it. LOL In spite of it,

I miss those days when they were all home. I have 5 children and the boys

seemed to be neater than the girls. I'm not a saver myself, since I can't stand

a lot of clutter, my husband is a saver and it drives me nuts You will get

through it, Josie, hang in there, We all seem to get past all of our lifes

trials and tribulations. Thank God!!! Bless you, Rita

[Guest guest]

Dear Rita:

You are so sweet! Giving me encouragement and support. I am pretty much ok.

I feel relaxed and content. My oldest daughter is doing her first year of

college and being a member of the Debate team at her school. Debate was always

a full time job for her. She did it through H.S. and was the only thing that

kept her busy and intellectually stimulated enough. I would have gone crazy

otherwise! She organizes her time very well and I feel at ease that she is so

busy and always with her Debate group that I hardly worry about her, even

though she is in the Midwest and I am in Miami. My youngest daughter also needs

the additional stimulation and work and is the assistan technical director of

her H.S. drama production, which keeps her very busy as well. You would think

I have all this time to do the rest of the stuff! I am the one that is

disorganized. I don't know where time goes. I am going to start doing what I

used

to do when I was young and go trhough my agenda planning the time to use for

each activity. It takes a while at night, but it organizes my day.

Enough about me! keep in touch. If I can help you let me know, we are not

too far away. I'll keep you all in my prayers, hugs, Josie

[Guest guest]

Dear Rita:

You are so sweet! Giving me encouragement and support. I am pretty much ok.

I feel relaxed and content. My oldest daughter is doing her first year of

college and being a member of the Debate team at her school. Debate was always

a full time job for her. She did it through H.S. and was the only thing that

kept her busy and intellectually stimulated enough. I would have gone crazy

otherwise! She organizes her time very well and I feel at ease that she is so

busy and always with her Debate group that I hardly worry about her, even

though she is in the Midwest and I am in Miami. My youngest daughter also needs

the additional stimulation and work and is the assistan technical director of

her H.S. drama production, which keeps her very busy as well. You would think

I have all this time to do the rest of the stuff! I am the one that is

disorganized. I don't know where time goes. I am going to start doing what I

used

to do when I was young and go trhough my agenda planning the time to use for

each activity. It takes a while at night, but it organizes my day.

Enough about me! keep in touch. If I can help you let me know, we are not

too far away. I'll keep you all in my prayers, hugs, Josie

[Guest guest]

Hi StPollys,

My dad is 72, diagnosed in July, but he had " alzheimers " for 3 years

preceding this diagnosis. I have read your posts and your husband

sounds a lot like my dad. It never occured to me that a group of

doctors would be a useful thing, but as long as it doesnt confuse

you even more, it sounds like it works for you! I just had the idea

that maybe they were all giving you conflicting information. Sorry

about that.

-Coyote

> Hi Coyote, Thank you for the reply. My husband is 73 years old.

He was

> diagnosed about a year ago, but I am convinced he has had it at

least three years,

> looking back at his behavior. It is wonderful to have this group

that has

> this disease in common to be able to relate to. It was a

neurologist that

> diagnosed him, but not one doctor seems to be able to answer all

your questions, so

> it is good to have this group to compare notes with. Thank you

for any input.

> stpollys

>

>

>

[Guest guest]

Hi Rita..

so maybe having one more doctor that knows a little more about LBD

might not be a bad idea. Especially when other doctors wont even

discuss it with you! My Dad does not have any other health problems

(touch wood). Is your support group for Alzheimers/related dementias

of specifically for LBD? I dont even know if they have any specific

to LBD..so Im curious. If you would be interested in an email buddy

I'd love to set you up with my Mom. She belongs to the Alz.

caregiver group, but I dont think she knows anyone with actual LBD

like my Dad. I have found having friends going through the same

stuff is wonderful and comforting.

-Coyote

> Hi Coyote, Sorry to confuse you, but my husband also is a

borderline

> diabetic, also has been told he has an enlarged prostate,and one

of his kidneys has

> weakened, so, he has been to several doctors not related to LBD,

but, when I

> mention LBD to them, they won't even discuss it. I can't believe

how many

> doctors have never heard of LBD. In that respect, they only want

to treat what

> they specialize in. It just seems he is always going to the

doctor for

> something. Rita {stpollys}

>

>

>

[Guest guest]

Just wanted to say Hi to all new members of the group, never wanted to 'meet'

new people this way though but it's great to have you all on board.

You'll get a wealth of support and information here and the truth of what this

disease can do to your LO, come here as little or as often as you like,

rant,vent,ask questions and get answers and sometimes even get a laugh.

Take care

.x

Re: New To Group

Hi StPollys:

Welcome to the group. What part of the country are you from? It sounds

wonderful that you found a support group. My dad had LBD, but had a very late

diagnosis. He died a month after he started getting really sick. He was 89

years old.

You are in a very good group. The support level and knowledge are

extraordinary. I feel that I cannot give a lot of practical advice because my

experience with my dad, after he was diagnosed and treated was so short, that

I defer

to the more knowleageble members of the group, but I am here to give all the

support I can. My thoughts and prayers are with you, your husband and your

family, Josie

[Guest guest]

Hi Rita,

I think my mom would really like that, if you are sure you dont

mind. I will try to set things up. You're right, its a very

different (although similar) disease than Alzheimers and since she

is in an Alzheimer group, almost everyone there is there for Alz.

Thanks.

Coyote

> Hi coyote, Yes I would like to e-mail your mom if she is

willing. I go to a

> support group in West Palm Beach. It is basically an Alzheimers

group, but

> there are about three of us who's husbands have LBD. It is a

disease similar

> but separate from Alz, so treatment is a little different, like,

LBD patients

> can't have the same meds as Alz patients, it works opposite for

them. LBD

> patients have symtoms of Parkinsons, The hallucinations start

earlier, also the

> REM sleep disorder is part of LBD. I'm learnig more and more about

it, but it

> doesn't lessen the stress. I think they both can take Aricept.

God Bless you,

> take care, Rita

>

>

>

[Guest guest]

Hi Lori..I was born 3/18/1956( about the same age as you ) ..I live near

Philadelphia in NJ but grew up in NYC. I have had big and little remissions

since 1972 when diagnosed. The people here are wonderful friends with great

ideas. Please lets us know how it is all going for you. I would love to see

Alaska

someday!

Hugs

Liz NJ

[Guest guest]

Dear Lori, Alaska must be great! My in laws want to move there after

their trip to Alaska. I am glad you are having good days . Hang in

there and know we are here for you! You have been thru so much! My

name is Sharon and I am 34. I have had Stills since I was 11. I also

have RA , sjogrens syndrome, fibromyalgia, and chronic sinusitis. I

live with my boyfriend of 5 years. We are a family here so vent to us

anytime ! Welcome to our family! love Sharon xxoo

> Hello, everyone. Just signed up to the group and thought I'd say

> hello to everyone. I've read a few messages, and I'm so glad I found

> y'all. Just a few details about me: 50 years old, divorced four years

> ago, moved to Alaska eleven years ago from Texas, a full-time middle

> school teacher (and no, I'm not insane), two children, and two

> beautiful granddaughters.

>

> I first started having problems on November 10, 2004. My family doc

> sent me to an RA specialist, who after many months finally decided

> that I have AOSD. That was ten months ago. This was after sixteen

> months of agony and suspense, tests of all sorts, and three weeks in

> the hospitla with pnuemonia. None of my docs--some of the best in

> Alaska--could figure out just exactly what was wrong with me. I just

> did't respond well to the various RA drugs prescribed. And I didn't

> exhibit all the classic signs of Still's.

>

> I'm now taking Kineret with Methatrexate, and a handfull of

> supplements and other meds. I'm feeling much better but still have

> too much pain for my taste. Also,I don't seem to suffer from the

> fatigue that so many of you mention. I do suffer constanly from

> joint and muscle pain. But it's better since I've started taking

> Kineret. I was taking 8 Percacets a day and was still in incredible

> pain. Now I go days without having to take any Percs. Guess my pain

> tolerance has improved. LOL A few years ago if I'd had pain as I do

> now, I'd have been in the hospital for sure. But now it's just a

> part of life.

>

> Looking forward to meeting you all.

>

> Lori

>

> PS Can't find the spell check, so I hope there aren't too many

> mistakes! Spelling isn't my forte. Guess I'll try Word and copy and

> paste next time. lol

>

>

>



[Guest guest]

Hi,

Welcome to the group. Sorry Stills brought you here but you have now found a

great place for information and support. Everyone here us great.

Take Care,

Chris

alaskanlori2002 wrote:

Hello, everyone. Just signed up to the group and thought I'd say

hello to everyone. I've read a few messages, and I'm so glad I found

y'all. Just a few details about me: 50 years old, divorced four years

ago, moved to Alaska eleven years ago from Texas, a full-time middle

school teacher (and no, I'm not insane), two children, and two

beautiful granddaughters.

I first started having problems on November 10, 2004. My family doc

sent me to an RA specialist, who after many months finally decided

that I have AOSD. That was ten months ago. This was after sixteen

months of agony and suspense, tests of all sorts, and three weeks in

the hospitla with pnuemonia. None of my docs--some of the best in

Alaska--could figure out just exactly what was wrong with me. I just

did't respond well to the various RA drugs prescribed. And I didn't

exhibit all the classic signs of Still's.

I'm now taking Kineret with Methatrexate, and a handfull of

supplements and other meds. I'm feeling much better but still have

too much pain for my taste. Also,I don't seem to suffer from the

fatigue that so many of you mention. I do suffer constanly from

joint and muscle pain. But it's better since I've started taking

Kineret. I was taking 8 Percacets a day and was still in incredible

pain. Now I go days without having to take any Percs. Guess my pain

tolerance has improved. LOL A few years ago if I'd had pain as I do

now, I'd have been in the hospital for sure. But now it's just a

part of life.

Looking forward to meeting you all.

Lori

PS Can't find the spell check, so I hope there aren't too many

mistakes! Spelling isn't my forte. Guess I'll try Word and copy and

paste next time. lol

__________________________________________________

[Guest guest]

Hi,

Welcome to the group. Sorry Stills brought you here but you have now found a

great place for information and support. Everyone here us great.

Take Care,

Chris

alaskanlori2002 wrote:

Hello, everyone. Just signed up to the group and thought I'd say

hello to everyone. I've read a few messages, and I'm so glad I found

y'all. Just a few details about me: 50 years old, divorced four years

ago, moved to Alaska eleven years ago from Texas, a full-time middle

school teacher (and no, I'm not insane), two children, and two

beautiful granddaughters.

I first started having problems on November 10, 2004. My family doc

sent me to an RA specialist, who after many months finally decided

that I have AOSD. That was ten months ago. This was after sixteen

months of agony and suspense, tests of all sorts, and three weeks in

the hospitla with pnuemonia. None of my docs--some of the best in

Alaska--could figure out just exactly what was wrong with me. I just

did't respond well to the various RA drugs prescribed. And I didn't

exhibit all the classic signs of Still's.

I'm now taking Kineret with Methatrexate, and a handfull of

supplements and other meds. I'm feeling much better but still have

too much pain for my taste. Also,I don't seem to suffer from the

fatigue that so many of you mention. I do suffer constanly from

joint and muscle pain. But it's better since I've started taking

Kineret. I was taking 8 Percacets a day and was still in incredible

pain. Now I go days without having to take any Percs. Guess my pain

tolerance has improved. LOL A few years ago if I'd had pain as I do

now, I'd have been in the hospital for sure. But now it's just a

part of life.

Looking forward to meeting you all.

Lori

PS Can't find the spell check, so I hope there aren't too many

mistakes! Spelling isn't my forte. Guess I'll try Word and copy and

paste next time. lol

__________________________________________________

[Guest guest]

My children go to Clayton Elementary. While they have not participated in the

preschool program, I've heard their program is great and their administration is

very knowledgable about autism and uses many successful inclusion strategies.

We live in Circle C.

It is not close by, but we go to Dr. Harkins (a developmental

pediatrician who has a son with Asperger's Syndrome) in San and there is

a long wait for a full evaluation so I would begin the process ASAP.

Maggie

Karyn wrote:

Hi!

My name is Karyn and I joined this group to learn more to help some of

the families that I work with. I work as an Early Intervention

Specialist for ECI and I have a daughter that is 2 with Down Syndrome.

I have a family I have been working with for 8 months and we suspect

autism. The pediatrician refuses to do anything until he turns 3 but

doesn't think he has it after spending 2 minutes with him. The family

has just found out they will be relocating to Austin next month.

Although I am sad to see them go, I think it will be best as they will

have access to a lot more resources. I was hoping some could help me

locate resources in Austin for them. Also, they will be looking for a

pediatrician and I was hoping I could get some suggestions because we

would like to have him tested soon after they move. They will be moving

to South Austin.

Thanks in advance for your help!

Karyn

Early Intervention Specialist