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In a message dated 9/11/01 7:54:43 AM Pacific Daylight Time,

godave4@... writes:

<<

Please everyone, pray for the people who were lost today and anyone

who can give blood, please do so. Marilyn

>>

Marilyn, they are all in my prayers..... Rich went and gave blood this

morning... I am unable to and regret that I can't... Going to get my girls

to go as soon as they can...

Today is a sad day... Prayers for all are going out.

hugs

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In a message dated 9/11/01 7:54:43 AM Pacific Daylight Time,

godave4@... writes:

<<

Please everyone, pray for the people who were lost today and anyone

who can give blood, please do so. Marilyn

>>

Marilyn, they are all in my prayers..... Rich went and gave blood this

morning... I am unable to and regret that I can't... Going to get my girls

to go as soon as they can...

Today is a sad day... Prayers for all are going out.

hugs

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> In a message dated 9/11/01 7:54:43 AM Pacific Daylight Time,

> godave4@c... writes:

>

Dear ,

Thanks, I can't give blood, but recruited 3 other people who went in

today to give. They were so busy that they have to go back on Friday

to donate. This is a sad day for our country.

Love, Marilyn

> Please everyone, pray for the people who were lost today and

anyone

> who can give blood, please do so. Marilyn

> >>

> Marilyn, they are all in my prayers..... Rich went and gave blood

this

> morning... I am unable to and regret that I can't... Going to get

my girls

> to go as soon as they can...

> Today is a sad day... Prayers for all are going out.

>

> hugs

>

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> In a message dated 9/11/01 7:54:43 AM Pacific Daylight Time,

> godave4@c... writes:

>

Dear ,

Thanks, I can't give blood, but recruited 3 other people who went in

today to give. They were so busy that they have to go back on Friday

to donate. This is a sad day for our country.

Love, Marilyn

> Please everyone, pray for the people who were lost today and

anyone

> who can give blood, please do so. Marilyn

> >>

> Marilyn, they are all in my prayers..... Rich went and gave blood

this

> morning... I am unable to and regret that I can't... Going to get

my girls

> to go as soon as they can...

> Today is a sad day... Prayers for all are going out.

>

> hugs

>

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  • 4 weeks later...

--- hcf wrote:

> Ok, Dear. Please everyone pray for my grandson and

> his wife. She is pg

> with their second child (a boy!!!!). Wasn't due for

> a coupla more weeks,

> but is having trouble. And the little guy is soooo

> big if she doesn't do

> something soon the doc is going to have to do a

> c-section. We should have a

> new baby in the next day or so. Thanks and God

> Bless.

> Jo

Jo, I will be praying for your grandson and his wife,

and the new baby. Let us know how it all turns out.

LOve, Sharon

> To: Rpolychondritis

> <Rpolychondritis >

> Date: Thursday, October 04, 2001 3:45 AM

> Subject: Where is everyone??

>

>

> >Ok, where have you all gone?? I hope you are all

> on vacation somewhere

> >having lots of fun. There were only 20 posts

> today and the majority of

> >those were in regards to the langgang posts or

> Lucy's moms passing.

> >

> >I'm sorry, but I have to say that I liked it before

> ......when we all chit

> >chatted. LOL

> >We found out more infomation that way.. Lets not be

> afraid to post. There

> is

> >the other site now that is for RP infomation only.

> Anyone is welcome to

> join

> >that group.

> >

> >We don't always have RP questions or information to

> share, but we need to

> be

> >there for each other and just chat... Find out what

> is going on in

> everyone's

> >lifes. We are a family... I like to hear about new

> babies, weddings,

> >vacations, etc...

> >It just is lonely out here and I don't like

> it...LOL Just my 2 cents.

> >

> >hugs

> >

> >

> >

> >DISCLAIMER!!

> >WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY

> INFORMATION THAT IS

> RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE

> CONSULT WITH YOUR DOCTOR

> BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT

> A SUBSTITUTE FOR YOUR

> PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER

> EVERYONE IS DIFFERENT AND

> TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

> >

> >

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--- hcf wrote:

> Ok, Dear. Please everyone pray for my grandson and

> his wife. She is pg

> with their second child (a boy!!!!). Wasn't due for

> a coupla more weeks,

> but is having trouble. And the little guy is soooo

> big if she doesn't do

> something soon the doc is going to have to do a

> c-section. We should have a

> new baby in the next day or so. Thanks and God

> Bless.

> Jo

Jo, I will be praying for your grandson and his wife,

and the new baby. Let us know how it all turns out.

LOve, Sharon

> To: Rpolychondritis

> <Rpolychondritis >

> Date: Thursday, October 04, 2001 3:45 AM

> Subject: Where is everyone??

>

>

> >Ok, where have you all gone?? I hope you are all

> on vacation somewhere

> >having lots of fun. There were only 20 posts

> today and the majority of

> >those were in regards to the langgang posts or

> Lucy's moms passing.

> >

> >I'm sorry, but I have to say that I liked it before

> ......when we all chit

> >chatted. LOL

> >We found out more infomation that way.. Lets not be

> afraid to post. There

> is

> >the other site now that is for RP infomation only.

> Anyone is welcome to

> join

> >that group.

> >

> >We don't always have RP questions or information to

> share, but we need to

> be

> >there for each other and just chat... Find out what

> is going on in

> everyone's

> >lifes. We are a family... I like to hear about new

> babies, weddings,

> >vacations, etc...

> >It just is lonely out here and I don't like

> it...LOL Just my 2 cents.

> >

> >hugs

> >

> >

> >

> >DISCLAIMER!!

> >WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY

> INFORMATION THAT IS

> RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE

> CONSULT WITH YOUR DOCTOR

> BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT

> A SUBSTITUTE FOR YOUR

> PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER

> EVERYONE IS DIFFERENT AND

> TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

> >

> >

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  • 1 month later...

Thank you Cathy..

Hugs,

Sandy

Subject: prayers

Lots of prayers coming from Cincinnati for , Sandy and Family. CathyD.

www.geocities.com/cdonohoue/DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Thank you Cathy..

Hugs,

Sandy

Subject: prayers

Lots of prayers coming from Cincinnati for , Sandy and Family. CathyD.

www.geocities.com/cdonohoue/DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Thank you Ann...

Hugs,

Sandy

Sandy,Know that I'll be praying for and you that all goes well.I know it is very hard on the Mother when something is wrong with the kids.Hugs, AnnDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Thank you Ann...

Hugs,

Sandy

Sandy,Know that I'll be praying for and you that all goes well.I know it is very hard on the Mother when something is wrong with the kids.Hugs, AnnDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Thank you Marilyn...

Love,

Sandy

----- Original Message ----- Dear Sandy,Positive thoughts and prayers go out to Valarie and your family.Hope all goes well. Love, MarilynDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Thank you Marilyn...

Love,

Sandy

----- Original Message ----- Dear Sandy,Positive thoughts and prayers go out to Valarie and your family.Hope all goes well. Love, MarilynDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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  • 1 year later...

Just wanted to let you all know that has been approved for

DBS (Deep Brain Stimulation) Surgery and assigned the date of

December 3 at Henry Ford Hospital in Detroit. He will have both

sides of the brain done, with the probe implants done on both

sides the first day and the pulse generators implanted surgically

about a week or so later. This means that he will also have to be

on a " medication holiday " (no meds) for several weeks (pre-op

and post-op). Please keep us in your prayers, especially ,

for we don't really know what his physical condition is without

Parkinson's drugs.

We are already praising God for this breakthrough and His

control of the whole situation. Please believe with us and begin

to thank Him and pray for opportunities for us to witness

throughout this time.

We love you all!

and Maggie

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Just wanted to let you all know that has been approved for

DBS (Deep Brain Stimulation) Surgery and assigned the date of

December 3 at Henry Ford Hospital in Detroit. He will have both

sides of the brain done, with the probe implants done on both

sides the first day and the pulse generators implanted surgically

about a week or so later. This means that he will also have to be

on a " medication holiday " (no meds) for several weeks (pre-op

and post-op). Please keep us in your prayers, especially ,

for we don't really know what his physical condition is without

Parkinson's drugs.

We are already praising God for this breakthrough and His

control of the whole situation. Please believe with us and begin

to thank Him and pray for opportunities for us to witness

throughout this time.

We love you all!

and Maggie

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Maggie,

Is this for MSA or PD? We know of only one person diagnosed as MSA

having DBS and it was not a good experience. DBS has a good reputation

for helping PD patients. Is this some new experimental operation?

Take care, Bill Werre

Maggie Brunette wrote:

>Just wanted to let you all know that has been approved for

>DBS (Deep Brain Stimulation) Surgery and assigned the date of

>December 3 at Henry Ford Hospital in Detroit. He will have both

>sides of the brain done, with the probe implants done on both

>sides the first day and the pulse generators implanted surgically

>about a week or so later. This means that he will also have to be

>on a " medication holiday " (no meds) for several weeks (pre-op

>and post-op). Please keep us in your prayers, especially ,

>for we don't really know what his physical condition is without

>Parkinson's drugs.

>

>We are already praising God for this breakthrough and His

>control of the whole situation. Please believe with us and begin

>to thank Him and pray for opportunities for us to witness

>throughout this time.

>

>We love you all!

> and Maggie

>

>

>

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

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Maggie,

Is this for MSA or PD? We know of only one person diagnosed as MSA

having DBS and it was not a good experience. DBS has a good reputation

for helping PD patients. Is this some new experimental operation?

Take care, Bill Werre

Maggie Brunette wrote:

>Just wanted to let you all know that has been approved for

>DBS (Deep Brain Stimulation) Surgery and assigned the date of

>December 3 at Henry Ford Hospital in Detroit. He will have both

>sides of the brain done, with the probe implants done on both

>sides the first day and the pulse generators implanted surgically

>about a week or so later. This means that he will also have to be

>on a " medication holiday " (no meds) for several weeks (pre-op

>and post-op). Please keep us in your prayers, especially ,

>for we don't really know what his physical condition is without

>Parkinson's drugs.

>

>We are already praising God for this breakthrough and His

>control of the whole situation. Please believe with us and begin

>to thank Him and pray for opportunities for us to witness

>throughout this time.

>

>We love you all!

> and Maggie

>

>

>

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

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Bill,

You are soooo right! My DBS experience was the most horrible thing anyone

could ever go through. I am just in the past month regaining my life. DBS

should be taken very very seriously. I do know one other person other than

myself who was Dx with MSA and had the DBS. Though he did not get the

infection and all the horror's that followed, the DBS did no good for him

either.

I do know that a MSA patient who suffers from chronic stiffness or extreme

tremor could possibly benefit from the DBS but it is not recommended by the

experts in the field of PD+ disorders.

Maggie, I have no intent to burst your bubble of excitement about your

husband possibly getting relief from having this surgery but you must make

good and darn sure that he is mentally able to survive the outcome if by

some horrible chance, things go wrong.

I have IMOHO advice that I would give anyone preparing to undergo any type

of DBS surgery... 1. DEMAND a PET scan to be absolutely sure that the

disorder being operated on is the one the person actually has. (I had the

DBS only to find out 10 months later that I never had PD or MSA). I didn't

have to go through such trauma if the doctors would have only double-checked

first. If you would like to learn more about PET scans and where to get one,

write me offline and I will provide you with the information. Please take

this advice seriously.

2nd... one has to be more than sure that if they wind up being the 1/100

with life-threatening problems after the DBS or the few that has lesser

complications after the DBS that they are psychologically strong enough NOT

to commit suicide. What I went through was suicide making and if not for my

faith and the persistence of my husband's love for me... I would have

committed suicide at any time from Feb. - Aug.

Again, I don't want to bash your excitement but please please please,

read, ask questions, know for certain what the doctor actually feels this

would benefit. What is the hospital's statistics for infection? How many

DBS's has the doctor performed? What is his success/failure/complication

rate? How long has he been doing this procedure? Are they using

steriotactic (sp) imaging for the surgery? Where was the doctor trained for

this surgery? What is his standards for treating the patient if something

goes wrong?

I know these are hard questions and I am coming off sounding like a turd

but I am very concerned for anyone who is thinking about this type of

surgery.

If you haven't already, please read my story and what happened to me.

http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside_deborah\

s_brain/

Also, go to my photo site listed below on the link and look at the

pictures of what happends during the DBS surgery. I had a photojournalist

present the whole time and the pictures follow the surgery graphically and

closely.

As many know, Bill W. and I don't see eye to eye often... but in this

case... I can not agree with him more.

Hugs and Warm Fuzzies,

Deborah aka Tenacity

Personal website & photo's

http://www.pdhangout.com

http://community.webshots.com/user/tenacitywins

Reply-To: shydrager

To: shydrager

Subject: Re: Prayers

Date: Thu, 14 Nov 2002 17:28:42 -0500

Maggie,

Is this for MSA or PD? We know of only one person diagnosed as MSA

having DBS and it was not a good experience. DBS has a good reputation

for helping PD patients. Is this some new experimental operation?

Take care, Bill Werre

Maggie Brunette wrote:

>Just wanted to let you all know that has been approved for

>DBS (Deep Brain Stimulation) Surgery and assigned the date of

>December 3 at Henry Ford Hospital in Detroit. He will have both

>sides of the brain done, with the probe implants done on both

>sides the first day and the pulse generators implanted surgically

>about a week or so later. This means that he will also have to be

>on a " medication holiday " (no meds) for several weeks (pre-op

>and post-op). Please keep us in your prayers, especially ,

>for we don't really know what his physical condition is without

>Parkinson's drugs.

>

>We are already praising God for this breakthrough and His

>control of the whole situation. Please believe with us and begin

>to thank Him and pray for opportunities for us to witness

>throughout this time.

>

>We love you all!

> and Maggie

>

>

>

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

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Share on other sites

Bill,

You are soooo right! My DBS experience was the most horrible thing anyone

could ever go through. I am just in the past month regaining my life. DBS

should be taken very very seriously. I do know one other person other than

myself who was Dx with MSA and had the DBS. Though he did not get the

infection and all the horror's that followed, the DBS did no good for him

either.

I do know that a MSA patient who suffers from chronic stiffness or extreme

tremor could possibly benefit from the DBS but it is not recommended by the

experts in the field of PD+ disorders.

Maggie, I have no intent to burst your bubble of excitement about your

husband possibly getting relief from having this surgery but you must make

good and darn sure that he is mentally able to survive the outcome if by

some horrible chance, things go wrong.

I have IMOHO advice that I would give anyone preparing to undergo any type

of DBS surgery... 1. DEMAND a PET scan to be absolutely sure that the

disorder being operated on is the one the person actually has. (I had the

DBS only to find out 10 months later that I never had PD or MSA). I didn't

have to go through such trauma if the doctors would have only double-checked

first. If you would like to learn more about PET scans and where to get one,

write me offline and I will provide you with the information. Please take

this advice seriously.

2nd... one has to be more than sure that if they wind up being the 1/100

with life-threatening problems after the DBS or the few that has lesser

complications after the DBS that they are psychologically strong enough NOT

to commit suicide. What I went through was suicide making and if not for my

faith and the persistence of my husband's love for me... I would have

committed suicide at any time from Feb. - Aug.

Again, I don't want to bash your excitement but please please please,

read, ask questions, know for certain what the doctor actually feels this

would benefit. What is the hospital's statistics for infection? How many

DBS's has the doctor performed? What is his success/failure/complication

rate? How long has he been doing this procedure? Are they using

steriotactic (sp) imaging for the surgery? Where was the doctor trained for

this surgery? What is his standards for treating the patient if something

goes wrong?

I know these are hard questions and I am coming off sounding like a turd

but I am very concerned for anyone who is thinking about this type of

surgery.

If you haven't already, please read my story and what happened to me.

http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside_deborah\

s_brain/

Also, go to my photo site listed below on the link and look at the

pictures of what happends during the DBS surgery. I had a photojournalist

present the whole time and the pictures follow the surgery graphically and

closely.

As many know, Bill W. and I don't see eye to eye often... but in this

case... I can not agree with him more.

Hugs and Warm Fuzzies,

Deborah aka Tenacity

Personal website & photo's

http://www.pdhangout.com

http://community.webshots.com/user/tenacitywins

Reply-To: shydrager

To: shydrager

Subject: Re: Prayers

Date: Thu, 14 Nov 2002 17:28:42 -0500

Maggie,

Is this for MSA or PD? We know of only one person diagnosed as MSA

having DBS and it was not a good experience. DBS has a good reputation

for helping PD patients. Is this some new experimental operation?

Take care, Bill Werre

Maggie Brunette wrote:

>Just wanted to let you all know that has been approved for

>DBS (Deep Brain Stimulation) Surgery and assigned the date of

>December 3 at Henry Ford Hospital in Detroit. He will have both

>sides of the brain done, with the probe implants done on both

>sides the first day and the pulse generators implanted surgically

>about a week or so later. This means that he will also have to be

>on a " medication holiday " (no meds) for several weeks (pre-op

>and post-op). Please keep us in your prayers, especially ,

>for we don't really know what his physical condition is without

>Parkinson's drugs.

>

>We are already praising God for this breakthrough and His

>control of the whole situation. Please believe with us and begin

>to thank Him and pray for opportunities for us to witness

>throughout this time.

>

>We love you all!

> and Maggie

>

>

>

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

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