Dear PD brothers and sisters
I can't imagine in my wildest thoughts a disease that is more FRUSTRATING
then PD
Contracting a neurological disease is a terrible life experience..but for the
most part, surgery or meds keep it on a steady course. Not PD!!!!!
My Pd took the form of freezing, cardboard stiffness and horiffic toe and
foot spasms. The ON/OFF's had gotten impossible to live with. Liquid Sinemet
was a great help. But, this relentless disease kept getting worse...the
freezing lasted longer, the stiffness made every move almost impossible and
the spasms were happening on both feet together. I felt I was impossible to
live with.
We all have our marvelous and wonderful neurologists who make every effort to
help us with new or different meds...but in the end its still downhill. And
the FRUSTRATION marches on. Now, speaking only for myself, I hd reached the
end of the line with my meds. My neuro had no new tricks up his sleeve. He
is a leading PD researcher and when I came to the end of my FRUSTRATION rope
he conceeded that surgery was the only hope that could "maybe" relieve my
pain and incapacity. My (our) hopes soared due in most part to the wonderful
people here who successfully underwent this op. It was because of, and, for
my family and friends here that I had the strength and courage to undergo the
thought of deep brain surgery while fully awake. WOW what a thought !!!!
Could I go through with it...".you bet I could"....I told all my family and
friends. Just the idea that I could live again!!!! WOW !! The TV
pictures, all the first person accounts of being reborn instantly in the O.R.
WOW !! How wonderful it was to think that I would'nt be my own prisoner
any more WOW !! I was going to be fortunate enough to be one of todays
modern medical miracles WOW !!
Well, the firty nine days from receiving permission till my big day went so
fast. Finally, everything was in place, all tests completed, all forms
filled out, my family at my side, the surgeons disclaimers were understood
and my hopes were jumping out of each pore. WOW !! here I go....into the
birdcage, into the MRI, into the O.R. doing everything anyone asked me to
do. Then I heard it.....'WE'RE ALL THROUGH AND IT WENT PERFECTLY!!!!!
WOW !!, I'll never forget that moment. Every picture I saw about
jumping off the table, every thought about playing tennis again, going back
to work, walking on the beach, not needing someone to help me to the W.C...
WOW !! , I couldnt wait to try out my new body.
I understood the first days might be rough...they were. Then according to
plan, I would be getting stronger and more independent every day. My meds
could be cut way back...I was in PD heaven. Chuck and the boys rushed to
telephone everyone who knew that I was going to have this miracle operation
that everything was successful.
I came home to a BIG welcome. And yes I was feeling better. WOW !!!!!!
NO MORE TOE AND FOOT CRAMPS ON EITHER SIDE WOW!!!!
NO MORE CALF AND THIGH PAIN ON EITHER SIDE WOW!!!!
NO MORE SLEEPLESS NIGHTS FOR CHUCK AND ME WOW!!!!!
MUCH LESS STIFFNESS can almost turnover in bed myself WOW!!!!!
BUT still some serious left foot tingling now and again ( I had a left side
op/ right brain)
BUT THE FREEZING CONTINUES. No more WOW!!!!! just a little wow.
Three weeks post Pallidotomy and Im still a prisioner. Half the day I cant
move my feet without help. And then I cant step more than a few inches even
with Chuck holding me.
THIS WAS NOT SUPPOSED TO HAPPEN WHY WHY WHY
Not only was I dreaming of a new freedom, so was my husband dreaming to have
some of his life back again. Now he's getting ansee and short tempered with
me. Even when he can grab a private moment to do his thing he knows its only
moments away from my call for help. He even got us a pair of walki-talkies
so he could try to grab a few minutes away from me and still be in contact.
Thanks to those talking machines I can give him some space and still not be
alone. We even whisper sweet nothings
Talk about frustration!!!! WOW!!!! I know my other symptoms are gone or
reduced and Im thankful every moment for that but because Im not running
around or even able to walk alone the frustration level is even higher. I
scream all day when Im alone. I sometimes miss trying to getting to the WC,
I cant have the table set and dinner ready for him, I start a project and
have to leave it in the middle, sometimes I can only get half dressed and
have to sit for hours to finish. I cant get to my meds in the other room.
and I dont want to have someone with me just to help me. I want my family
back, I want my friends back, I want my life back!!!!
H E L P
Does anyone else suffer from freezing without tremor. I take the normal
meds...
Liquid Sinemet in OJ, CR, Permax, Parlodel, Clozoril (for the Parlodel)
Ativan and Pergocet/Motrin for some relief and a whole lot of Vit E and B12.
Has anyone been successful eliminating or greatly reducing the freezing???
Does anyone including Joe B and John C know of any new meds coming down the
pike or in testing phases???
(Yes Chuck and I do see a therapist famiiar with movement disorders)
Im not suicidal, Im not depressed, I M F R U S T R A T E D ! ! ! ! !
Joyce
