what does 'off' mean? (re-post) part one of two

[janet paterson <janet313@xxxxxxxxxxx>]

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     (for gail)

     ---------------------------------
     Post: 084496
     Date: 2000/08/13 14:08:22 -0400
     From: janet
     Subj: what does "off" mean? / revisited once again
     ---------------------------------

     hi all

     i have been asked for this again
     and it seems to grow like topsy each time
     here is the latest version

     not much has changed in the past two years
     except that i am becoming more sensitive to dyskinesia
     at the non-statuesque end of the levodopa 'on/off' spectrum

     with some experimenting (md approved)
     i do believe that Sinemet CR (Controlled Release) melted in my
     mouth
     (technically a 'no-no')
     as a replacement for Sinemet IR (Instant Release)
     is a great help in smoothing out the bumps

     janet

     53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd

     ---------------------------------
     Post: 062301
     Date: 1999/06/24
     Subj: what does 'off' mean? / revisited / re-post
     ---------------------------------
     Post: 052014
     Date: 1998/11/23
     Subj: what does "off" mean? / revisited
     ---------------------------------

     hi bill

     i posted this to the list but maybe you missed it
     so here is your own copy

     one of my purposes behind posting this piece
     was to add to the 'bring pd out of the closet' movement

     in the past
     pd's physical symptoms have too frequently been
     concealed from public view out of shame and embarrassment

     however, i feel compelled to add this
     my disclaimer and caution to a relative pd newbie:

     please remember i'm 10 years further down the road than you
     that you have the 'tremour type' while i have the 'rigidity type'
     that none of us react the same way to pd and its meds
     that the current research and medication and surgery options
     have never ever been so active and so promising

     golly
     after all this build-up
     you'll be wondering what in heck you've let yourself in for!

     never mind
     it's just another test

     janet

     ---------------------------------
     Post: 048053
     Date: 1998/09/07
     Subj: on/off syndrome / what does 'off' mean? - re-visited
     ---------------------------------

     hi all

     joy graham wrote:
     >Some time ago there were some excellent postings regarding
     >the "on/off" state/syndrome. I have filed them away so
     >carefully that I have lost them. I think it was Janet
     >Patterson who wrote a long and detailed essay on the
     >subject - would love to have that one please. I am
     >collecting them with the hope that those who wrote them
     >will allow me to send them on to the nurse who is
     >coordinating the Nurse Education course in PD (commencing
     >early in 1999) at Curtin University in Perth. Please could
     >you send them to me? And would the authors please
     >let me know if it is okay to use them in this way? ...

     joy,
     below please find a copy
     of my message "what does 'off' mean - revisited"
     which was a response to another cyber-family-member
     requesting permission

     my policy regarding others' using my messages is unchanged;
     however, if any profits accrued thereby reach or exceed
     my annual medication costs, we have to talk!

     your cyber-sibling

     janet

     ---------------------------------
     Post: 044552
     Date: 1998/07/09
     Subj: what does 'off' mean? - re-visited
     ---------------------------------

     hi all

     this message is similar to those russian wooden dolls:
     a message inside a message inside ...
     please bear / bare with me ...

     i've been asked for permission
     to copy the message below which i originally sent
     to the parkinson mailing list support group on the internet

     my answer was, and is, and will be, an unqualified "yes!"
     i am thrilled to have my words reach anyone else
     who might benefit from them

     anyone out there with pd
     is automatically on my 'buddy list'
     (and if that anyone shares clinical depression with me as well
     then 'buddy' gets promoted to 'sibling-in-slime'!)

     a couple of notes of caution:
     a 'newbie parkie'
     might find my description of being 'off' scary, i don't know;

     i remember not having a clue as to what 'on' and 'off' meant
     for several years post-diagnosis
     since pd generally progresses
     ve-r-r-r-r-y slowly

     i cannot emphasize too strongly
     that pd is the ultimate custom-fit designer-disease

     in general, there are four major symptoms:
     tremour, rigidity, bradykinesia (slow movement), and poor balance
     but they can manifest totally differently from one person to the
     next
     in terms of intensity and even existence

     (i have all of them except tremour
     which is the most common symptom
     go figure!)

     with love

     janet

     age 51 / 10 years since pd diagnosis

     ---------------------------------
     Post: 043410
     Date: 1998/06/21
     Subj: what does 'off' mean?
     ---------------------------------

     hi all

     a friend asked me
     "what does 'off' mean?
     what does it feel like? physically? emotionally?"

     this was my reply:


continued in part two...

janet paterson, an akinetic rigid subtype parkie
53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd
TEL: 613 256 8340 SMAIL: PO Box 171 Almonte Ontario K0A 1A0 Canada
EMAIL: janet313@xxxxxxxxxxx URL: