There is truth transfixed in trite expressions.  "What a Difference A Day
Makes," is a prime example.  Yesterday, I could barely function.  Today I'm
feeling great!  I wish I could have related my entire experience with you
yesterday, but alas, my synapatic firing kept getting jammed.  I couldn't hit
the cognative mark :D

First I'd like to thank everyone who gave me places to look for addtional
information.  In addtion to technical info, I was hoping to speak to a few
people who may already utilize the device.  I did get a few names which I'll
check out.  In the meantime, I just have to tell you about the Doctor I
found!

I don't believe I related the last experience I had.  I know I should have
shared this with you, but I was so upset, I couldn't even bring myself to
talk about it.  Two months ago, I was bounced from Primary Care Physican, to
Orthopedic Dr., then he pushed me onto a Neurologist.  As I understand, most
CP cases are managed by a Neurologist, so I felt, "At last I was in the right
place."  My mom drove me in and I know I'm prone to exaggeration, but honest
to God, the man had me in the office for less than five minutes.  I wasn't
examined.  He asked me a few cursory questions only.  First he suggested I go
to an Orthopedic Dr.  I told him, "That's who sent me here to see you."  Then
he actually said, "Well, I don't see what the problem is.  You were born with
CP.  You should be used to it by now.  Nothing more can be done for you."

I walked out to write the check and mom said, "Did you forget something?
Isn't the Doctor back there?"  I told her I was done, paid the check, and
that I was heading to the car.  My said she'd be right behind, she was
finishing up a conversation with some people she'd been chatting with who
were waiting to be seen.  She came outside, looked me in the eye and said,
"Okay, what's wrong.  Something bad happened I can read it on your face."  So
sitting on a bench, 34 years old, I start crying like a big baby.  I told her
what he said.  I was so disappointed and hurt and felt stupid.  She told me
he was the jerk and we should look for another doctor.  I was just so
shell-shocked, because I'd been in pain for months and was despertae for
relief.  I couldn't even bring myself to think about going to another doctor.

Well, hubby's employer just changed Health Insurance again, so I needed to
find a doctor quick who could perscribe my maintance drugs.  I decided to
again try a Neurologist.  (Another trite expression coming)  The difference
between them was like Night and Day!  This doctor saw me before I filled out
ANY paperwork even.  The nurse had me put on a gown!  Geeze, last time I
disrobed for a Neuro was about 17 years ago!  He gave me a COMPLETE exam.  He
took my Full history, including the details about my birth (which no one has
ever done!).  He told me he is working on a few studys.  I figured as much
from the questions.  In the meantime, he breaks right in the middle of the
exam and says, "Oh! You know, I just read an article on CP in one of my
journals.  Hold on, I'm going to my office and see if I can find it, be right
back."

Good Gravy Batman- this guy was like some super-hero doctor.  A doctor who
reads the journals?  A doctor who listens?  A doctor who has alternative
options for treatment?  - I almost had to pinch myself!  I told him he
restored my faith in the medical profession.  I also confided in him about my
recent experience with the other doctor.  He seemed to be more upset by it
than I did.  As if this dinosour doctor besmerched "His" profession.  I still
can't get over it.

Any way, he suggested the Baclofen pump because I currently take 60MG daily
by mouth.  He said it is extremely inefficeint deleivery.  Using the pump a
minisucle dose could be administered directly into my spinal cord.  The
side-effects are lessened because the drug doesn't travel through the entire
blood stream and through all of the organs.  It makes sense, but I'm still a
bit leary.  He also wanted me to stop taking the pain killers, and switch to
something non-narcotic.  I told him no problem.  He thinks I'm addicted, but
I haven't taken any since I've seen him and no DT's, no withdrawls.  I only
took 1/2 to 1 pill a day, but I've been on them for years, so it caused him
some concern.  I also told him, I take the pain killers as a last resort.
It's not so much the pain (I do have an extrememly high tolernace for pain),
what drives me to the medication is feeling so stiff and achey.  I told him
it's like I'm wearing a cement over-coat.  I'm weighted down and everything
snaps and crackels when I move, if I can move.  He suggested the additional
Ativan, which so far is really doing the trick!  It's so bizzare I can hardly
stand it!!!!!   - You know how when you get in the pool, you feel that
unfettered freedom of movement?  Then the second you step on dry land you
feel about 50 pounds heavier and completely awkward?  Well with the added
Ativan, my body has a fulid movement I haven't felt in years.

I notice my hands don't curl up into the "Claw" when I'm watching tv.  When I
walk, I usually do it on the balls of my feet.  Now if I concentrate, I can
get in a few "heel-toe, heel toe"  Geeze, I haven't been able to walk
heel-toe for about 10 years!

I'm not getting my hopes up because when I first went on Baclofen five years
ago, I felt a marked improvement, but as my body adjusted to the medication
the control was gone.  Still, it's a good feeling.  There are some negatives.
 I feel sort of tired out and droopey, but HEY!  At least I'm loose and
droopy, instead of tired out and tight.

Thanks for letting me share.  I'll keep you posted on Dr. Brody's treatments.
 OH- he also suggested I get an MRI to see where the actual brain damage is.
He said that it can't be corrected, of course, but it is good to have a
reference, so if there are neurological changes, they can be seen and treated
accordingly.  He said too many doctors chalk a patients problems up to the
obvious (like the cp).  He said it is important to stay alert, because other
things can go wrong.  Did I tell you this guy was great or what?   - Well
that's all.  Take Care, Be well, and For Pete's sake, try and find a good
doctor.  It really does make all the difference.  - Denise.