Re: a poem i wrote and is published

[Guest guest]

Dear everyone,

i kknow we all can relate to our lo's being stuck in a world of their own, well

one day after an esp bad day with dad, i had an email to submit a poem for

publishing. i can write poetry when i am emotional and i thought heck why not,

whats the worse that can happen, i express my feelings in poetry and it doesnt

make teh cut. well my poem is now published in a collection of poetry and this

is what i wrote and my own personal intro about teh poem.

This poem is in honor of my dad, who has Lewy's Body Dementia, a progressive

brain disease with varying symptoms including hallucinations, fluctuating

cognition, along with Parkinson's and/or Alzheimer's symptoms. I believe this

poem expresses his fears and thoughts along with others who are unable to speak

what they are thinking. I hope it helps other caregivers understand what their

loved one may be going through. Sending hugs to everyone who cares for those in

need of caregiving.

My Own Little World

My mind is locked in my own little world,

Tightly wrapped, like a flag is furled.

I try to reach out to the ones I love,

But find I am closer to God above.

Slowly, I shut out everyone in my life,

My kids, even my husband or my wife.

My world is closing in on me,

Getting harder for me to see,

I am scared of these feelings,

The fear has me reeling.

I try so hard to reach out of these clouds,

Can't you hear me screaming out loud?

Please help me out of my world,

Like a flag I want to unfurl.

i am sending this to all my lbd caregivers because i feel that it may help us

remember that they cant always expres what they want. i wrote this after dad

had a very bad day and i wasnt treated like his daughter but more like his

prostitute and he was my pimp. that is so hard for me, but i have to realize

that it is the lbd talking not him. my mom wants me to send this poem to oprah

to see if she will read it on her show and talk about lbd, what do you all

think?? hugs sharon m pensacola, florida

Date: 2005/08/09 Tue AM 02:57:30 EDT

To: LBDcaregivers

Subject: New Member : Isabella

a smile a day, keeps the meanies away!!!!

[Guest guest]

That was great. You go for it, send to oprah. I now have tears

coming down my face. As you said earlier, tears are good.

> Dear everyone,

> i kknow we all can relate to our lo's being stuck in a world of

their own, well one day after an esp bad day with dad, i had an email

to submit a poem for publishing. i can write poetry when i am

emotional and i thought heck why not, whats the worse that can

happen, i express my feelings in poetry and it doesnt make teh cut.

well my poem is now published in a collection of poetry and this is

what i wrote and my own personal intro about teh poem.

>

>

> This poem is in honor of my dad, who has Lewy's Body Dementia, a

progressive brain disease with varying symptoms including

hallucinations, fluctuating cognition, along with Parkinson's and/or

Alzheimer's symptoms. I believe this poem expresses his fears and

thoughts along with others who are unable to speak what they are

thinking. I hope it helps other caregivers understand what their

loved one may be going through. Sending hugs to everyone who cares

for those in need of caregiving.

>

> My Own Little World

>

> My mind is locked in my own little world,

> Tightly wrapped, like a flag is furled.

> I try to reach out to the ones I love,

> But find I am closer to God above.

> Slowly, I shut out everyone in my life,

> My kids, even my husband or my wife.

> My world is closing in on me,

> Getting harder for me to see,

> I am scared of these feelings,

> The fear has me reeling.

> I try so hard to reach out of these clouds,

> Can't you hear me screaming out loud?

> Please help me out of my world,

> Like a flag I want to unfurl.

>

> i am sending this to all my lbd caregivers because i feel that it

may help us remember that they cant always expres what they want. i

wrote this after dad had a very bad day and i wasnt treated like his

daughter but more like his prostitute and he was my pimp. that is

so hard for me, but i have to realize that it is the lbd talking not

him. my mom wants me to send this poem to oprah to see if she will

read it on her show and talk about lbd, what do you all think??

hugs sharon m pensacola, florida

>

> From: cindy lauper <bella_220a@y...>

> Date: 2005/08/09 Tue AM 02:57:30 EDT

> To: LBDcaregivers

> Subject: New Member : Isabella

>

>

> a smile a day, keeps the meanies away!!!!

>

>

>

[Guest guest]

thank you for the vote, i am proud of it and i am seriously considering sending

it to her, still waiting on input from others, take care and hugs, sharon

Date: 2005/08/09 Tue PM 04:07:44 EDT

To: LBDcaregivers

Subject: Re: a poem i wrote and is published

a smile a day, keeps the meanies away!!!!

[Guest guest]

I agree that you should send it. Think of the exposure for getting info out on

the disease should she read it and do a show about it.

cj:)

Re: a poem i wrote and is published

a smile a day, keeps the meanies away!!!!

[Guest guest]

You did a good job in speaking for your Dad and others with LBD. Of course, I

cried.

I think it is an excellent idea to get in touch with Oprah or use any other

means to bring LBD to the attention of the public. Even doctors do not know

what it is. However, my son-in-law is a physician and he sat for the renewal

(sp) of his boards last week.. There were two questions about LBD on his

exam,so maybe we are getting somewhere. He was able to answer these questions

without difficulty because of his involvement with my Dad. I find it very

frustrating to have to tell the doctors what medications my Dad can and cannot

take. Some look at me like I am crazy since they never heard of the disease.

If you go public with your poem, it will educate not only the public, but also

bring the attention of LBD to the nurses and doctors.

Thanks,

Gerry

New Member : Isabella

a smile a day, keeps the meanies away!!!!

[Guest guest]

I agree! Your poem says it all and someone like Oprah is the perfect person to

help us spread the word about this disease. She has so many people watch her

show - any book that gets in her book club is automatically a best seller. I

know we are all telling others about LBD, but we need all the help we can get.

in WA

Re: a poem i wrote and is published

a smile a day, keeps the meanies away!!!!

[Guest guest]

Ophra would be good, I'll go if you need some company, Shirley

> Dear everyone,

> i kknow we all can relate to our lo's being stuck in a world of

their own, well one day after an esp bad day with dad, i had an email

to submit a poem for publishing. i can write poetry when i am

emotional and i thought heck why not, whats the worse that can

happen, i express my feelings in poetry and it doesnt make teh cut.

well my poem is now published in a collection of poetry and this is

what i wrote and my own personal intro about teh poem.

>

>

> This poem is in honor of my dad, who has Lewy's Body Dementia, a

progressive brain disease with varying symptoms including

hallucinations, fluctuating cognition, along with Parkinson's and/or

Alzheimer's symptoms. I believe this poem expresses his fears and

thoughts along with others who are unable to speak what they are

thinking. I hope it helps other caregivers understand what their

loved one may be going through. Sending hugs to everyone who cares

for those in need of caregiving.

>

> My Own Little World

>

> My mind is locked in my own little world,

> Tightly wrapped, like a flag is furled.

> I try to reach out to the ones I love,

> But find I am closer to God above.

> Slowly, I shut out everyone in my life,

> My kids, even my husband or my wife.

> My world is closing in on me,

> Getting harder for me to see,

> I am scared of these feelings,

> The fear has me reeling.

> I try so hard to reach out of these clouds,

> Can't you hear me screaming out loud?

> Please help me out of my world,

> Like a flag I want to unfurl.

>

> i am sending this to all my lbd caregivers because i feel that it

may help us remember that they cant always expres what they want. i

wrote this after dad had a very bad day and i wasnt treated like his

daughter but more like his prostitute and he was my pimp. that is

so hard for me, but i have to realize that it is the lbd talking not

him. my mom wants me to send this poem to oprah to see if she will

read it on her show and talk about lbd, what do you all think??

hugs sharon m pensacola, florida

>

> From: cindy lauper <bella_220a@y...>

> Date: 2005/08/09 Tue AM 02:57:30 EDT

> To: LBDcaregivers

> Subject: New Member : Isabella

>

>

> a smile a day, keeps the meanies away!!!!

>

>

>

[Guest guest]

I just visited Oprah's website - www.Oprah.com She has a place where

you can submit ideas for upcomming shows

This is the link (try cut and paste)

https://www.oprah.com/plugger/templates/BeOnTheShow.jhtml?action=respond & plugId=\

B2100004

How about we all submit the same or similar idea? It might help us be

heard!!

--- Berk wrote:

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

I agree! Your poem says it all and someone like Oprah is the perfect

person to help us spread the word about this disease. She has so many

people watch her show - any book that gets in her book club is

automatically a best seller. I know we are all telling others about

LBD, but we need all the help we can get. in WA

Re: a poem i wrote and is published

a smile a day, keeps the meanies away!!!!

[Guest guest]

I wrote to her as well and suggested she do a show on LBD

>

>

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

> I agree! Your poem says it all and someone like Oprah is the

perfect

> person to help us spread the word about this disease. She has so

many

> people watch her show - any book that gets in her book club is

> automatically a best seller. I know we are all telling others

about

> LBD, but we need all the help we can get. in WA

>

>

> Re: a poem i wrote and is published

>

>

> a smile a day, keeps the meanies away!!!!

>

>

>