http://www.geocities.com/janet313/wordsoth/2000/20000813.html
------------------------------------------------------------------
(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: [log in to unmask] URL: http://www.geocities.com/janet313/
