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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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