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hi michael this is the message i referred to earlier janet ---------- 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/ [log in to unmask]