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     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

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     what does 'off' mean? - re-visited                       98/07/09
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     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

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     what does 'off' mean?                                    98/06/21
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     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]

     later
     i am back
     i'm using a sinemet cr to cruise me through
     the half-egg sandwich i scarfed
     on my way out the door

     during hormone hell periods
     sometimes i get nervous about just how much time i'll have on
     so when i'm on
     i tend to race the clock

     i just did the week's grocery shopping in record time!
     i remind myself sometimes of the white rabbit!

     i'm about 80 percent kicked in right now
     4:20 pm and we'll see how she goes

     emotional?
     hmmmm...
     this is a situation that crops up every 90 minutes for me
     of every day of every week of every month of every year
     [when my hormones aren't running rampant]

     if i catch the timing just right
     [and if the stars are with me]
     i can avoid a major 'off'
     completely
     but then again
     maybe i'll hit a hormone hell day
     or maybe even three or four in a row
     when i have more 'off' time than 'on' all day
     when i get 'stuck' somewhere unexpectedly for three or four hours
     [= the condom counter story!]

     this is the way i am
     and close to the way i have been for ten years and more
     it's 'normal' for me

     the unpredictabliity of the hormone 'offs' can be frustrating
     but i don't see any point in fighting it and getting mad
     what good would that do?

     the irony with pd is,
     if i get emotional, i get kicked out even further
     so i just take it as it comes
     as i do with life
     what else can i do?

     i can look at the 'off' times as a frustration and a pain and a loss
     or
     i can look at them
     as enforced slowdowns
     e.g. ma nature forcing me to put on the brakes
     for a good reason, i am sure
     [and i think i have started to find parts of that reason]

     i have noticed that other people, friends and strangers alike
     seem to react more emotionally to my pd than i do
     maybe just because it's new to them

     the other day i was semi 'off'
     in an italian grocery store with my sister
     she went through the checkout line
     i shuffled through another way
     and she beat me to the car

     i noticed a woman in the checkout line
     watching me and though i didn't look directly at her
     [not out of embarrassment - i was too busy concentrating on my feet]
     i got a distinct impression that she had an expression of
     pity / sympathy / empathy on her face

     kickin out a tad now
     my legs are getting a bit stiff

     but anyway
     i may sound like this is all matter of fact and so what
     and that is truly how i feel about it

     bemoaning my pd and its symptoms
     is a waste of my time and energy
     like bemoaning my height or my hair colour or my freckles

     i'm doing what i can to deal with the situation
     as much as i want to

     e.g. i used to dye my hair to hide the grey
     but i don't bother anymore
     i kind of like the grey as it is

     i certainly can't do anything about my freckles
     some people hate them
     some people love them
     i can't see them either way
     they are just me

     this is the way i was made
     'i was like this when i got here'

     so
     i don't know what i can tell you about the emotional aspect
     of my on and off periods
     or as i call them sometimes
     my kicked in and kicked out states
     [regardless, i'm always kickin]

     when i can't walk or type, i lie down
     and try to let my muscles relax as much as possible

     i sometimes think that relaxing them
     helps to speed up
     the 'kick-in'

     so
     i do crossword puzzles, or if i don't feel up to that
     i read, or if i don't feel up to that
     i think, or
     i meditate, or
     i look at things, or
     i listen to things, and you know where that gets me!

     4:35 pm
     still 'on' but my back is pinching
     heck - i've had forty years of hormones
     i'm done, i'm not in need of anymore!

     after i received my diagnosis of pd, i felt deathly afraid
     but that fear was based on ignorance and shock
     and has dissipated completely

     i have always felt very hopeful in the long term
     about treatments and even a possible cure
     viz
     the new drugs and surgeries
     that have become available just in the past ten years

     i could have been 'given' a much harder test than pd
     viz
     christopher reeve and stephen hawking...
     relatively speaking this is a cake walk!

     irregardless,
     i'm going to make sure i pass this exam with flying colours
     and learn as much as i can from it

     i've always been nosey as heck
     and always want to know how and why things are the way they are
     so i think i've been given 'mulling' and 'digging' time

     but now
     i'm stiffening up a tad more
     and i'm going to lie myself down with my kitties

     janet

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janet paterson
52 now / 41 dx / 37 onset
PO Box 171  Almonte  Ontario  K0A 1A0  Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
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