Hans,
Did you also try to get Dr. Lieberman's help? . He might be able to
strengthen your plea for help. Please try to contact him on ask the
doctor. You have nothing to lose. Please keep us posted.
Emily
----- Original Message -----
From: "Hans van der Genugten" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, July 12, 2002 4:31 PM
Subject: Please help Tenacitywins !!


> Hi all,
>
> I'm sending this at the request of Robert Setzer, the husband of
Deborah
> Setzer (aka Tenacitywins).
>
> If you have questions about this posting, you can write directly to
Robert
> Setzer at [log in to unmask]
>
> Hans.
>
> Your help and support is needed !!
>
> Hi every one, I am Robert, Deborah’s husband, she is also know as
> Tenacitywins. But right now she is not winning this battle and she
needs
> your help. About a year ago, she looked at me and said “honey, one day
I
> will not be able to continue this fight and I am going to try and
teach you
> all I can so you can continue it for me” well, that time has come.
>
> Deborah was Dx with PD in 99 and MSA which is actually Parkinson’s
plus
> syndrome in 2000, she was in so much pain in 01 that she said to me
one day,
> “if this is as good as it is going to get, I do not want to
participate”
> with that, we got an appointment with a Doctor Steven Tatter at wake
Forrest
> Hosp in Winston Salem N.C, and in Dec of 01 he preformed a DBS on her.
It
> had to be removed in Jan 02, just 16 days after it was put in. She had
a
> infection in her brain, neck and chest. She was on 42 pills a day and
2 IV’s
> per day and she got a very serious reaction to one or all. They don’t
know
> which it was, but she blistered all over her body. Including her ears,
> mouth,
> you name it, it was there as well.
>
> Since than, she has been on steroids for reactions to any medication
that
> would help stop the pain. I took her to a Nero eye doctor about 2
weeks ago,
> and after about 1hour and 30 mins later, he said to us, “have you
considered
> a STEM CELL transplant?”. He said that the base of her brain stem is
> deteriorating and that there is nothing wrong with her eyes. It is her
that
> which is the problem.
>
> Our own Dr Raad, told me and she about 3 weeks ago, that in his
medical
> opinion, Deborah has only about 2 years at best to live in the
condition she
> is in presently.
>
> I happen to know that in Los Angeles California, that they may have
the
> CURE, not just for Deborah but for all who have PD/MSA. But like every
thing
> else, they are still in the trail process. Here is the link for you to
see
> for your self..
>
> http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=3627
>
> I have sent them a letter and asked for there help, that it is Deborah
’s
> only chance to survive.   Dr Raad also knows about this and he
suggested
> that if I could get enough people to write or fax a letter to them
that they
> might consider her in the program even though she has MSA. After all,
she is
> dieing ,  So why not try her. But we need you help in pouring out the
mail
> to them. Actually flooding them with E-Mail’s and Fax’s in support of
> helping her.
>
> Can you please take 10 minutes out of you day or night and help us.
After
> all, if for some reason, she as an experiment has success, it is
success for
> all of you. PD/MSA and even other’s .
>
> Here is the letter I wrote to the doctor:
>
> Dear Dr. Levesque
> I am writing on behalf of my Wife, Deborah L. Setzer,Who was DX with
Pd in
> 99,MSA in 2000, DBS Dec of 2001 and removed in Jan 2002, had staff
> infection.. See article by Charlotte Observer dated March of 2002.
>
>
http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside
_deb
> orahs_brain/
>
> My wife to date is still on steroids because of reactions to any drug
that
> has a content of any Opiate in it and can not stop the pain... It is
in
> every joint in her body along with her muscle tissue hurting at the
touch...
>
> Our present Doctor is Dr. George Raad here in Charlotte, if it was not
for
> him she would be dead from all the medicine given to her after the
infection
> was found. With in 6 day after org surgery is when the infection
started...
>
> We went to a Nero-Ophthalmologist last week, because of her sight (one
side
> long and the other far) after about a hour he said that her eyes were
normal
> but that after looking at her MRI’s and scat scan's he said a brain
stem
> transplant is what she needs. That it is going away.
> We also had a PET SCAN done approx 2 weeks ago at Carolina Medical
Center,
> here in Charlotte, but they do not have any one who is qualified to
read it.
> Only for cancer, seizures and diabetes.
>
> My wife just turned 40 years old in January and our own Doctor has
given
> Deborah less than 2 years to live under these conditions...
>
> Folks, She is dieing and needs your help... Please, if you are going
to try
> more patients, she is willing to give you her life to help her
possibly gain
> LIFE.
>
> Please I ask you... Please consider her for your program.  This is a
MATTER
> OF LIFE OR DEATH.
>
> Please let me know that you did in fact get this so that at least she
and I
> know we have tried to get help... One way or another...
>
> Thank you
>
> Robert Setzer sr.
> Deborah Setzer, Patient
> 16308 autumn creek court
> Charlotte, N.C. 28278
> 704-588-9797
>
> Dr. George Raad
> Park road medical center
> Charlotte, N.C,
> 704-523-2565
>
> The Doctors personal E-Mail is:    [log in to unmask]
>                       Fax#         310-659-6631
>
> If you can do this, thank you
> Robert   “tenacity’s man”
>
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> In the body of the message put: signoff parkinsn

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