Hello Again,

All I can say is WOW!  I can't tell you how all of your feedback to my story
has meant to me.  I started a media campaign in December, prior to me even
having my head shaved.  I sent a press release, photo's and information
about PD and what I was going to do to every media source I could think of
as well as EVERY US Congressperson and Senator and my state governor.  I
wanted to educate the public and thought that maybe someone would be
interested if I did something unusual... I said in my press release that
after the chance for infection was gone, I would allow people to autograph
my shaved head for a donation for Parkinson's Research/Funding/Benevolence,
etc.  As you know, I never got that far but more importantly, I would NEVER
consider doing that again, because of infection risk.

I was not as successful as I had hoped to be but there was one source that
said that they would do the story, my local newspaper, The Charlotte
Observer.  What was to have been a one day, pass in the night story has
turned into a 4 day run covering everything that has happened.  This issues
will cover: What it is like to live with Parkinson’s and the quality of life
issues that led to my decision to have the surgery, the surgery itself, the
success of the surgery, the staph infection which resulted in the removal of
the DBS, the drug induced illness that I wrote about in my previous post and
finally why I want to have the surgery again and the message that I am
trying to convey to the public.  What I earnestly want to get across is that
PD is real, our population is aging, if the public does not get off their
tails and do something NOW, then look at me, I could be their future, they
could have to make the choice I had to make.  Would/Do they find that
acceptable?

What makes this more wonderful is that the story will be sent along the wire
via  Associated Press and Night Ridder to all of their subscribers.  It will
then be up to the local radio/television/newspapers here in US as to whether
they choose to run the story or not.

My hope back in December and again after seeing your feedback, is that you
will call/fax/email your local media/politicians and tell them YOUR story.
Make yourself known in your own town and tell how you feel about what is/is
not being done, not only to help yourself but future generations as well.
Then tell them about the story that will be coming along the wire to them
about me (if they subscribe to or are owned/operated by one of services
mentioned above).

There is enough time for this to snowball.  There is something you can do.
I know that I am not alone in what I want to accomplish.  I see so much
frustration in the posts about people just not understanding or
misunderstanding what PD is and what choices are available for PWP.

I must admit, I am very nervous about having written this.  When I asked for
help from the online community back in December I received some negative
feedback from people stating that are not comfortable trying to push this
down the throat, so to speak, of people who have shown no interest in
listening to begin with or misunderstanding that I am trying to
sensationalize my own personal battle with PD.  Please, Please, Please,
understand what is in my heart… I am sick and tired of being the victim and
I refuse to play that roll any more!

I looked at what I was complaining about and then looked at what I, one
“nobody,” can do and what the cost/benefit of such would be.  I remember
stating to a friend that if it takes a clown to bring people to the circus,
then use me as the clown.  I analyzed the situation and came to the
conclusion that the greatest cost was only my pride and the benefit could
potentially be tremendous for many.  The other option was to do nothing
which to me left me in the roll of victim.  To me, that was unacceptable.

My request of you therefore is just that, a request.  Do or don’t do what
you feel comfortable with.  Regardless, I will continue to scream and make
waves wherever I can until the day I die.  Like I have stated before, I want
to live and know that future generations will never have to go through what
we have and never have to make the choices we have had to make.  I want this
disease to be a part of the history books which in time, all will have no
recall of what it was really like to have or know someone who has had PD.

I have been told that the story will run March 17 – 20.  I pray that this
does not change.  I have also been told that the story will be available
online at

http://www.charlotte.com/mld/observer/

All I ask of you is to follow your own heart,

Deborah aka Tenacity Wins
But for the Grace of God, Go I!




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