Hi Deborah,
   My name is Paula and I had the DBS on 10/30/00 in Phila., PA.  I ended up
with edema in both legs, during the surgery, but I used electric leg pumps
for six months and I am doing much better.   I can well imagine the
heartbreak after you had the courage to go thru the surgery.  I wanted to
back down at the last minute, but I did it.  I'd do it again if I had to.
Best wishes.
Paula J. Shook
----- Original Message -----
From: "Deborah Henderson-Setzer" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, January 12, 2002 1:08 PM
Subject: Re: Write to People Magazine


> Stacy,
>
>   I admire you for the courage and thought that it took to write this
letter.  As I lie in the hospital for the 7th day which came about from a
staph infection after receiving a DBS, I can only thank you for the letter
that you sent.  I knew the risks that were involved in DBS surgery and I
accepted them and ununfortunatly, I was the 1 in 10,000 that gets an
infection in the brain after surgery.  Last Sunday, I had to have the DBS
completely removed and am on iv antibiodics for the next 10 weeks.
>
>    Had there been another choice for me to take, I would have tried it. It
is so frustrating knowing that I don't have a lot of choices.  I am 39 years
old and due to my PD/MSA I felt that I had not other choice but surgery b/c
I was in advanced stage of PD symptoms.
>
>    I do not know how my story will turn out but I am 100% behind you in
the letter that you wrote.  How I wish that stem cell research would advance
enough for me to have a choice in my treatment.
>
>    I, like you, will not sit quietly by and deteriorate.  I feel that
there is a lot of good life to live and I will continue to write my
senators, congressmen and anyone else that will listen and a lot that will
not that there are faces to this disease and to take a good look at us...
.we are the ones that have to live by their decisions... not them.
>
> Sincerely,
> Deborah Setzer
> aka Tenacity Wins
> But for the Grace of God, Go I!
>
> ----- Original Message -----
> From: Stacey L. Downing
> Sent: Saturday, January 12, 2002 12:25 PM
> To: [log in to unmask]
> Subject: Write to People Magazine
>
> I wrote the following letter to the editor of People magazine, I encourage
> you to all write one as well.
>
> I feel your timing in glorifying the adoption of frozen embyros to be
> tasteless.  Specifically because not a fair amount of magazine space was
> given to the millions of already existing lives these embryos could help
or
> even save.  It is a beautiful thing, a newborn baby and to give one to a
> childless couple, even more amazing.  What happens when one of those new
> babies is born a diabetic, or grows up and is diagnosed with Parkinson's
> Disease in their twenties?  You accomplished one side of my mission, to
take
> the focus off the cells and put it on the faces.  Now, lets give fair
space
> to the faces of those already living human beings it will help.
>
> I wrote a letter to the President when he was making his choice about
> funding stem cell research.  I have included it because it still shares
the
> feelings of a person waiting while others ponder the circumstances of
> something that  could save her life and is a cry out to those stopping it
to
> think twice about what they know to be true.
> Dear Mr.. President,
>
> I am a thirty eight year old woman who has been diagnosed with Parkinson's
> Disease.  I believe in the right to life as well as the right to choose
and
> I believe a man should pay for his crimes imprisoned rather than put to
> peace.  That is really what death is - peace.  So, you see we differ and
yet
> agree on many issues not unlike all of America.  I have no idea what God
is
> thinking about the stem cell issue or if he considers the cells they are
> using life.  Does it have a soul?  Unfortunately we can never know. What
we
> are faced with is the fact that this research could end the suffering of
> those we do know God considers life and if you believe in spiritual
things,
> are positive have a soul.  Might we consider this research like the
rowboat
> in a storm.  Would we recognize God's help if we were looking it in the
eye?
>
> Is it right to play with the creation of life in the first place?  Any
> childless couple longing to be parents would argue that this method of
> science is their rowboat in the storm. The fact is that this method of
> science is being used and the life that is produced is no different than
one
> created from natural methods. Who knows for sure that intercourse is the
> only way that God intended for life to be created?  The next fact is that
> this method of science has "residual" that is proving to be the key to a
> "cure" for diseases threatening the lives of millions of people.  Would we
> recognize God's help if we were looking it in the eye?
>
> As far as I know, God is not living amongst us in the physical form.
Anyone
> claiming to be him would surely be cast aside and labeled crazy.  Yet, he
is
> present and individual interpretation of what he may or may not be
thinking
> is the foundation for many important decisions, most recently the decision
> to fund stem cell research.  I don't know.  Unlike those opposed to
funding
> the research, who claim to know exactly what God is thinking, I simply do
> not.  I do know that this research has the potential of changing the
futures
> of millions of people.  Would we recognize God's help if we were looking
it
> in the eye?
>
> Thank you for your time,
>
> Stacey Downing
>
> Support the fight against Parkinson's Disease
>
> Visit us at www.bid4cure.com
>
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