hi michael

this is the message i referred to earlier

janet

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

hi all

this message is similar to those russian wooden dolls:
a message inside a message inside ...

bear / bare with me...

09 july 1998
introduction

i've been asked for permission
to copy the message below which i had 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 parkinson's disease
is automatically on my 'buddy list'

[if that anyone shares clinical depression with me as well
then 'buddy' is 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
ver-r-r-r-y slowly

i cannot emphasize too strongly
that pd is the ultimate 'designer disease'

there are four major symptoms
tremour, ridigity, 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 paterson

age 51 / 10 years since pd diagnosis

---------------------------------------------
Subj: what does 'off' mean?
Date: 98-06-21 00:21:06 EDT
---------------------------------------------

hi all

a friend asked me recently
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

1:45pm

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?

1:50pm

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

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

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

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

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 speed up the 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

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 was diagnosed, i felt deathly afraid
but that fear was solely based on ignorance and shock
and has dissipated completely

i have always felt very hopeful in the long term
about treatments and possible cures
viz the new drugs and surgeries
that have become aavailable 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!

regardless,
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

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

----------

janet paterson - 51 now /41 dx /37 onset - almonte/ontario/canada
http://www.newcountry.nu/pd/members/janet/
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