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Subject:
From:
Jennifer Zubko <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Sun, 10 Mar 2002 18:18:44 -0500
Content-Type:
text/plain
Parts/Attachments:
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Hello Everyone,

I am writing to ask for a small prayer. I have an appointment with my
physiatrist here in Ottawa (who is a pain specialist), on Thursday. I KNOW
THAT MANY OF YOU HAVE BIGGER THINGS TO WORRY ABOUT THAN ME, AND NEED MORE OF
GOD's HELP. but please pray that Dr. Albright in Pittsburgh gets his video
of me standing, sitting walking, driving my power chair, etc. before the
appointment, so that I might be able to take some proof to him that I have
dystonia that can cause all my pain, symptoms, spasms, lack of sleep because
my body is moving almost all the time, etc.
I am hoping that if I have a diagnosis from the best person in the world who
created protocols for treating CP with dystonia, and ITB,  it might give
more cause to my case. I am still praying Dr. Albright can somehow see
me/treat me, though no clue where I might get the funds. He said it would
cost 30 thousand US dollars for pump implant in Pittsburgh.

I got a phone call from the social worker at Alberta Children's Hospital,
where my rhizotomy was done. She phoned on Saturday and said she passed the
message on to Dr. Myles-- my neurosurgeon. If Dr. Albright cannot do the
surgery, maybe he can pass the video on to Dr. Myles/ explain the treatment
protocol for dystonia with intrathecal therapy, and my situation.

I ALSO HAVE AN UPCOMING APPT. WITH A PAIN CLINIC IN TOROINTO, WHO KNOWS
NOTHING ABOUT ME, WILL NOT BE BIASED. I AM STILL HOPING, PRAYING ASND DOING
MY SCHOOLWORK. Please pray that I will find the right people to helpv me as
soon as possible.

I know it sounds stupid, but I have even written to Oprah to ask for help
even getting to Pittsburgh for evaluation. Her own struggles brought to
light in her biograpy on A and E the other night made me want to write. No
response yet though.

I will keep everyone informed once Dr. Albright has seen the video, and once
I discover about the adult SWASH, and gait trainer/Hart Walker. (since these
two things are in Canada, they have their videos already)

Just as a sidenote, the only thing Dr. Delaney could come up with was for me
too see a phychologist. We have many at school, but my GP is just giving me
long appts. and allowing me to find out about the dystonia diagnosis before
he deems that this is all in my head.

Please pray that everying goes well, and that God has a plan that will help
me rather than just keep hirting me physically, emotionally, etc.
I will wait for HIM, as hard as it is.
Thanks for your thoughts and prayers.
Jenn
PS  Bonnie (the social worker) said to be proud of who I am and keep
sticking up for myself, and believing my own heart.) SHE SAID TO BE  PROUD
OF MYSELF.

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