what does 'off' mean?
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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:

     i'm 'off' now so i will try to describe it

     1:45 pm
     i'm very stiff
     my back and neck muscles just get tighter and tighter
     as i sit here
     if i don't make a conscious effort to force them to relax somehow
     they will virtually seize up and hurt almost like a cramp

     if i move into a different position
     ideally lying horizontal
     my muscles still feell tight
     but they are no longer straining

     as i try to type
     and keep on typing
     nomatter how slowly
     mmy arm muscles start to seize up
     and hurt
     and movement becomes slower and more difficult

     i will now stop correcting my typos
     my arms are now trembling
     but u dint think its from the pd directly

     i relate it to muscles trembling undere stranin
     like lifting weights

     if i can stop and 'force' the relaxation
     or move
     eg
     i just stoood up
     and now am tapping with two fingers
     it can ease a bit
     buti think the change just brins different muscles into use

     its weird
     'forcing' muscles to relax
     is an oxymoron, no?

     1:50 pm
     i can stand but i cannot walk
     my legg muscles are starting to get into
     the same strain/tremble mode

     this is a pretty profound hormone off
     its like he sinemet haas no effect at all
     wehn it kicks in
     all the stiffness 'melts' away

     while it's kickinig inn
     whch can happen in a matter of minutes
     i feel like i want to flex every muscles really hard

     i feel like the hulk
     when he changes into the green marsh monster
     and his limbs burst through his clothes

     andi'm starting to kick in even now as i type
     i'm typeing this three times faster than the line before

     i took sinemt a good hour ago
     and it should have kicked in much earlier than this
     but its the dang hormones

     i'm still weak and doubt that i can walk
     lemme try
     nope
     i stood up but i cant get my legs to move forward
     unless i really think hard abouot it
     but my neck is much looser
     and i have just unintentionally started correcting typos
     without even thinking about it
     almost up to normal speed now

     2:03 pm
     standing up again
     yep
     i can now take little shuffling steps
     if i keep going now
     i could probably jog but not walk
     weird huh?
     something to do with voluntary and involuntary movements
     conscious and unconscious
     learned and unlearned

     2:06 pm
     one more time
     yep
     i just walked around the kitchen
     everything
     is starting to feel looser
     my neck and back will be the last
     but i still have a 'stutter' step when i first start off walking
     once i'm moving its not too bad

     2:10 pm
     this is why i say thank god for drugs
     its like i go through this miraculous transformation
     to varying degrees and at varying frequencies
     all day every day

     with good sinemet management
     the 'offs' can be minimized in intensity and duration
     and now my toes are starting to wiggle of their own accord
     i can stop doing it if i wwant to
     but it feels good!
     hah!

     2:11 pm
     up again
     i'm virtually walking like a normal person
     my arm swing is back
     i dont feel shakey
     i dont feel real strong yet
     but that will come back too

     i'm typing almost as good as i ever can
     although i can't say much for my grammar!

     hah!
     when i'm kicked in
     you get punctuation!

     we are all different
     we all have different combinations of symptoms
     we probably all have different contributing causes

     i'm sure mine is what they call trauma induced
     due to a head concussion and a pesticide exposure
     in the same months the first year i was in bermuda
     = 1981

     i first felt 'shakey' and 'stiff' three years later
     but wasn't desperate and diagnosed for another four years

     no constipation, no face mask, no drooling, no tremor
     no olfactory problems, no voice/speech problems
     etc etc
     sounds to me more likely to be trauma induced
     rather than just plain old degeneration

     anyway
     now that i'm kicked in
     i haveta go git some groceries
     or the felines in this house will commit matricide!!

     thanks for asking this
     it's been interesting (for me, at least)


continued in part 2 ...

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http://www.geocities.com/janet313/wordsoth/2000/20000813.html

janet paterson, an akinetic rigid subtype, albeit perky, parky
PD: 54/41/37 CD: 54/44/43 TEL: 613 256 8340 EMAIL: [log in to unmask]
"a new voice" home page: http://www.geocities.com/janet313/     .
"new voice news" latest posts: http://groups.yahoo.com/group/nvnNET/     .

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