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Paul,

  I agree that both sides of the story should be told and because of that, I
posted what has happened to me. My story is not typical but it is within the
realms of possibility.  IMOHO, you were a little hard on Rayilyn.

  Knowledge is power.  Prior to my surgery, I educated myself about the
procedure and had only found two people that had negative outcomes.  I knew
all of the statistics and was able to make an informed decision to have the
surgery.  I do not regret my decision.

  The neurosurgeon that did my surgery has even referred other patients to
talk to me.  He said that you usually find two types of people.. those whose
outcome was wonderful and tell all the warm-fuzzies stories or those whose
outcome was not successful who speak with anger and attorneys and vengeance
and negativity.  I fall somewhere in the middle... I can tell the
warm-fuzzies of the dramatic improvement that the DBS brought to me as well
as being able to talk about "almost" the worse possible outcome that you
would want to hear.

  Is it really that incredible that I would want to have the surgery again?
I am 40 years old, I am not ready to stop my life because of PD.  The
surgery worked, I was better and I will be again.  I have a memory to hang
on to and something to look forward to as well... dancing with my husband
again.

  If there is any anger or bitterness within me, it is that more has not
been done to find a cure.  I find it deplorable that I even have to make a
choice about DBS surgery and the benefit/risk of such.

  If we are going to fight... let's not do it over verbiage or with one
another.  Let's do it with the public and the people in our government who
can bring about change. Let's put our energies towards eradicating this
disease by putting a face to it, taking it out of the closet, showing and
making people know that one day, we could be them.

  Yes Paul, both sides need to be told.  To date, DBS is the medical miracle
for us, it is in my opinion the best solution but in no means is it the
cure. I am so grateful that I live in a time where I can have this option
unlike those a decade ago.  Let's unite and fight together so that a decade
from now even DBS will be something of the past.

Deborah
But for the Grace of God, Go I!


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