CRPS: Twist and Shout!

Warning... this was done as a diversion and without pretension of video quality.  It's 8 minutes of your life if you watch it;  It was 8 minutes of mine whether you watch it or not.  I was/am extremely punchy because the spaz attacks began last evening...

© 2013 L. Ryan Follow my blog with Bloglovin

Another Shower, More Chicken Soup

I ran into another person.  No, let's rephrase and reconstitute that!  

I came across another situation peopled with idiots, and the situation does not allow for the differentiation of the well-meaning idiot from the uncaring idiot from the trained monkey with flat affect.  

That's right!  It was a lawyer.

And it made me think of this post, written last October 23, and the poem which concludes it. 

You can't tell, but the air here today is rank with that smell peculiar to desperation.  It's in the sweat, it flits from the pores, the lightest of emulsions.

There is not a story behind every poem.  Every poem is not "true." Not all writing is autobiographical.

Because of my "success" in typing through the minefield of the ACA online Federal Marketplace, actually succeeding in finding very good and very affordable health insurance that will maintain my near poverty very well, my name has been given to several media outlets.  Among them, CNN.

The reporter who interviewed me, twice I think, if we don't include today, does not listen.  He wants a certain response, of course, and steers his interviewee in that direction.  You can tell he is not listening because he often begins his "next" question while you have not finished, adequately, the answer to the current one.  And by the tone of voice, and by the fact that he does not seem to retain the information you have given.  But, who cares?  It's his métier, let him be good or bad at it, and let that be his choice.

So I did my part.  Never was there a mention of actually being recorded for televised broadcast -- nothing beyond audio, I presumed, since it never came up.  I assumed that I sucked so much as a subject that it just wasn't even a viable issue.

And besides, life has gone on in the interim.  Damn it.

I had a bad night last night.  You know.  Screaming, which oddly enough assumes more and more dreamlike status, whereas gentler moans will actually wake me from real sleep.  Lots of pain, lots of infection symptoms in the shoulders and hips, and so on and so on, ad nauseum.  You know the Punch Line:  the screaming ninnies of spasticity.  I didn't even bother with meds, just put in the earbuds, sang my heart out between yelps and sometimes must have slept... if those moans really did bring me back to consciousness.

Concern for Fred.  Concern for me and Fred.  Regrets.  Wishing I would die before sun up, so that my room might be redolent with the odor of roses.  That's right, you reprobates, I fully intend to die a sainted death.  I like this new pope and have already put in the paperwork for sanctification.  You laugh now, but one day you won't.

So I finally get the screaming meany ninnies to stop, close my eyes, rest, and the phone rings.  As I am waiting for several important calls -- maybe even El Papa, himself -- I pick up, something I never used to do before the crisis with the Mother-Unit.  Now I am a true adult, ready to speak to anyone, medical bill collector, Mother-Units, veterinarians, friends (ha!), insurance company, or rambling, ambling CNN reporters.

My "Hello" might have been deceptively bright -- the sure way to know if you have awakened some poor soul at the other end of technology.

Anyway, he yadda-yadda-ed and then asked about bringing a crew over for a quick recorded interview.

Now I had given this journalist person full access to this enlightening blog -- such a simple document -- and even suggested a few of my pristine video selections on YouTube (channel "profderien"), not so much because I was whoring myself, but because I figured he needed to understand that between being butchered half to death these last few wonder years, and having CRPS in all limbs, including my frigging face, that I would not be given to appearing on television.

I cry when I see myself.  I can handle the CRPS update videos, done mostly for the CRPSers in my small but dedicated audience, because it is piecemeal, it is abstracted, somehow, and I can include touches of minute humor.  But... take the elevators in my go-to-guy doctor's building.  The doors are mirrored.  So there I am, in my wheelchair, surrounded by normal looking folk, looking... grotesque.  Seen as a whole, I do not recognize myself.  Not just from the CRPS, not just the wheelchair, the legs, the hands, the face, but also the impact of over 15 years on steroids and clothing that was designed for gimps.

You'd have to be an idiot to read this blog and not know that every mention of high-powered italian leather shoes reflects my love of shoes.  I haven't been able to wear shoes for over a decade.

I mean... I thought a reporter would GET IT.  But then, I made an assumption based on narcissism (a decent definition of "hubris," really).  His story is not about me.  It is about "Obamacare," something I desperately want to support, and had been handed a mighty vehicle with which to do my small part.

I love my step-mother with a full and aching heart.  But I would never let her see me.  Not now.  I love TW with a heart more than full, more than aching... and never will he cross the threshold of The Manor's Bronze doors.  I will let Grader Boob (the other Brother-Unit) in... but only because he was wily enough to stop by once already.  And because he's been here, or there, through it all, anyway.  Because I don't think there is much left that can shock him -- more is the pity.

So something led me back to that freaking file of writing that I did earlier this year, and to this poem written kind of for Fred and kind of for the new friends I was making, who were wearing me out with suggestions for cures.

People don't GET IT.

This is the poem I wrote, for people who don't GET IT.  There is no imperative that they should, but there'd be a deep water well full of gratitude if they did.  So, in this unimportant instance, "A Shower and Chicken Soup" is dedicated to John Bonifield and Elizabeth Cohen, with all due respect.



A Shower and Chicken Soup

"Have fun," she called, and waited
for the sound of the key in the lock
to ready herself for a walk.

"Just do it.  Just do it.  Just do it,"
she said, eyeing the clock.
Not exactly scared -- more properly
put -- she was reticent.
"Don't dare mock me,
cats, and don't dare
get underfoot..."

Transfer from bed to chair using
one step with the right leg,
which leg is the right leg?
(they are easily mistook
these dread and crafty limbs,
one for the other, just look
at 'em) add a table grab-'n-push
with the right arm,
find the cane! find the cane!
then pivot, pray, and sit,
stare straight ahead,
it will ease, it will away,
will it away. where is that
leg now, cagey bastard?
It can stray, did it stray?

We said we'd walk together baby come what may

That come the twilight should we lose our way

If as we're walkin a hand should slip free

I'll wait for you

And should I fall behind

Wait for me

Reach to retrieve three towels from the half-bath,
folded earlier today, towels in waiting,
attendants all. Remove the Fentanyl pain patch,
dispose of it carefully, lest you kill a small animal.

(By accident.)

Take off the pink metal-studded hairband,
that wonderful confusing message!
You stall as you recall, you stall as you recall.

Gather the grabber designed for water,
aquamarine with finely molded tips, the three towels,
a clean pair of scrubs and the veterinary formula
of skin cleanser prescribed by the infectious disease specialist --
because you cannot afford the stuff made for people
and, it would appear, there is no difference.
This is labeled: For Horses.

It lacks in fragrance. It's not honeysuckle, trenchant lemon,
clement cucumber, or any of the serene green teas.

Poured in an old spray bottle accorded precisely
scored markings of perfectly proper proportions,
add the fragrance of the week,
something he deplores but you love:
Lavender.
(I picture fields of flickering blues;
I don't like the smell, either.
It smells too much.)

I shower in his bathroom.
The chair won't fit the door.
All these fine parameters, tincture of this,
precious local provender,
And the chair won't fit the door.
Grabbing on to sink and towel holders,
using my peony-decorated cane,
I lean on the tile at the shower-and-bath
combination corner, keening, keening,
so afraid, leaning, keening.

Toss the towels, the grabber, the cane,
the clothes, all, all of it goes, flying and clanging
into the bathtub, as you inhale
and search for sane,
focus on the pretty pretty cane.

Lift in the right leg, drop it,  scream,
and grab for the stabilizing bar
on the opposite side, my guard, above
the soap dish, with my right hand,
half pull, half fall inside,
the abattoir, hips on the shower
chair that stays in there,
that stays in there.
There is a screw poking through
the plastic, you said it did not match
the pre-drilled hole, and I always land on it,
ripping my clothes, scratching my right thigh.

I never tell him because this piercing keeps me focused

-- spastic and sarcastic --

this is what keeps me from screaming more:

the mean cost of a small scrape.

I cannot reach the mat that keeps me
from slipping; it's now on the left,
therefore unreachable.
If what I need is not within
the right's realm,
it cannot be mine.
She sighs, she cries,
she stops, she stops.

She stops,
thinks of the clock
and how there is no time
for this sighing, this crying.

Now for the undressing, the easiest part:
The few moments of liberation,
nothing touching the skin,
and I would sit there naked all day
except that he'd come home
and I'd still be unclean,
my hair a fated mess, and my legs... my legs.
My hated fenestrated legs.

Right arm tosses the dirty clothes
just to the right of the sink,
but not too far, not to block the way
out, not so the door won't open.
I'd be trapped in here,
and that would defeat
almost everything.

Now everyone dreams of a love lasting and true

But you and I know what this world can do

So let's make our steps clear that the other may see

And I'll wait for you

If I should fall behind

Wait for me

Use the grabber to put the clean clothes over the shower rod:
This will take time and patience.
Put one towel on the tub floor
in lieu of the non-skid plastic mat
that is too heavy to lift.

Put the veterinary antibiotic spray poisoned
with lavender on the tub floor
between the feet.
Use the grabber to retrieve
the shampoo and conditioner,
the purple "pouf"
from the shower caddy.
Pick up the pumice stone and loofah
that you knock
off by mistake,
and replace.

Brace yourself and slow your breathing.
Turn on the hot water first; it takes 20 seconds to warm up,
then adjust the cold so that the water becomes lukewarm
to your body, to your chest;
do not trust the readings of your legs or hands,
your face.

Hold the shampoo bottle in your left hand, and be glad that it naturally
tilts downward so your right hand can catch the coconut (for extra body) white
pool, slap it on your head, one more time as fast as you can, and catch the shampoo bottle before it falls on your feet -- your foot,
because that right foot is like a magnet.

Lather, being as attentive to each side of the head as possible,
grab the grab bar, lean forward into the spray, get all the shampoo out.
Apply the conditioner in the same manner.  Start your mental clock.

While it's making your hair luxurious and smooth,
spray your body with the antibiotic cleanser meant for horses.
Don't rub or scrub it in, just let it sit, keep spraying until time to rinse
that lovely head of curly hair, about three minutes
(an extra minute for luck).

Rinse the conditioner from your head, try to stop crying,
because looking down you see red streaks in the froth
of the foam
and feel your skin splitting,
small tears in both shoulders, the thighs,
the right shin, the feet,
and maybe that spot on your butt
from the poked-through screw,
but probably not,
there's actually a callus there now.

Bend and twist and let the water rinse away the spray
then lather the purple pouf with soap
and gently gently wash every place that you can reach
from head and bloody ears to bloody toes.

Gasping now, wanting so to take the memory of a lovely warm shower
coursing down skin so silky, relaxing muscles tight from a day in the sun
playing pick-up tennis at the park courts downtown,
pausing to cool down with wall ball now and then,
cramming the car full of kids to drive to the last surviving
pharmacy with a fountain to get real lemonades, limeades.

Holding my face right up into the spray, hands over my head,
running through my hair, short then,
the idea of standing through a shower
now as foreign as saffron.

Rinsing, she has learned, is crucial, as she's never
terribly dirty, just a mass of dead skin and sweat that her twice
sometimes thrice cleansings per day obliterate, but the lotioned,
medicated cleansers so recommended leave traces, traces,
bits, hints, lint, evidence, of themselves
and her inabilities.

Her stepmom used to comfort her when the flu would hit,
bustling about efficiently, able to do a sickbed mise en place
but lost before the recipe ingredients in her huge kitchen.
equipped with culinary's finest stainless.  She bears bedside
basins and washcloths, clean gown and sheets, and as she talks to you
about the plans for redecorating the breakfast nook, she
untucks the top sheet, helps you off with your gown,
and, keeping you covered and warm,
she washes and rinses clean your face, your arms,
your arm pits, wipes down your legs, but really scrubs your feet.
A matter of fact, she hands, at the last, two wash cloths,
one soapy, one rinsed, to clean between your legs
while she gathers up all the dirties, holds out the basin
to collect those last two cloths, and takes it all away --
but is back in a flash, saying, "That takes care
of the hot spots, you see.  Always wash the hot spots,
and always wash your feet, you will feel so much better.
Now don't you feel better?"

All in her sweet southern lilt that belies
the swift efficiency
of a born nurse,
if not a mother.

She slips the clean gown, your favorite, blue with blue ribbons,
over your head, helping with the confusion of arms, laughing,
and simultaneouly removes the dirty, now damp, top sheet.
She pulls the wing chair she says is for "reading" close and
before you know it, you're ensconced in it, and on the bedside table
is her famous Campbell's Tomato Soup and whole
wheat toast, for dipping.

You can't eat it all, that's fine, and look, the bed's all made,
amplified with extra pillows, the sturdy kind, the kind
that have you sitting up and doing crosswords, or reading
(outside the reading "chair"), and looking out the windows --
(when did she open the drapes?) and looking out
to see the woods.

You notice that she's gone.  You cannot remember if you thanked her.
The house is huge but even in huge houses, you know every sound and
you detect the tiny click of the other wing's separating door
and laugh, hearing the advancing, slowly speeding click-click-click
of the small thing they call a dog, coming to amuse you.
Oliver, half cocker spaniel, half poodle, sweet and small
and not ingenious.

There is nothing for it but to do the feet,
let the tub fill up six or nine inches, try to move
them around a bit, take the pouf by the grabber --
now that is a saying wanting wide adoption:
take the pouf by the grabber, lads --
and gently scrub unless too much skin
slides off and pinkens the six or nine inches.

When the water drains, give the feet a good spritz of Magic
Lavender Lavage and do what you can to make it seem
you'd never been there.  Grab the grabber, lads,
and take up the sodden towel, wipe and spray,
wipe and spray, leave no microbes
alive.  Die, pathogens, die.  Disappear,
O Flakes of Me, down the drain.

And now you fold up, you ball up like tissue paper, lose
form,  lose patience with yourself and this, your accomplishment.
Dizzy, naked, and still clothes to wear and hair to do,
and my, you are aromatic.

It takes two towels and a method:
Dry the hair, gently, and toss the towel in a slap
to the back as many times as you can, then
rest.  Without giving it much thought, pull
up on the steadying bar, and stand.
Put the towel on the seat and sit back on it
as that is how one dries the derrière when
exhausted and the right arm ready
to give out.

Take the second towel, toss it over your legs,
gently, gently, stop, stop, stop.
Grab the grabber, lads! Grab the grabber, boys!
The clean top pulls on, hitches where the skin
is still wet, damp, humid. so be
patient. Be patient.

Grab the grabber, lads!
Grab it, boys!  Unfurl the scrub pants
that always look so huge until you have to put
a foot in, matching right foot to right pant leg,
left foot to left pant leg, yelling, screaming,
rivulets of pink, mostly sera now,
mostly lymph, but every inch aflame.

Scan your area. Is all that can be in place
in place, is there no embarrassment left to shame
you?  Your top is on, your pants around your ankles.
Hang the blessed grabber on the caddy, grab the bar
and stand again, yelling, screaming, those noises cannot
be my bones, mobilize your self, girl, get the waist
of the pants with ye olde grabber, pinch them with your left
hand, finally good for something, and use the right
to pull them up and fashion loops resembling a bow.

We swore we'd travel darlin side by side

We'd help each other stay in stride

But each lovers steps fall so differently

But I'll wait for you

And if I should fall behind

Wait for me

Hug the wall, no other description writes, hug the wall,
the hooks there mere inches from your eyes and every time,
every time, you think my eye my eye my skull my skull
impaled on this hook, and after I've done all this?

Crying, sobbing, more because you are almost done and
because you can, because he's not here to hear you,
you edge to the door, using grabber and cane, both
for crutch, then fall into the chair, waiting there
like an old hated friend, with two cats, big-eyed and
scared by all your noise, and about to be crushed by your
descending butt.  They run, squeaking, happy
that you made it out alive, in time
to feed them.

The cane now more useful held by the bottom end,
using the handle to hook all the towels and clothes,
pulling them to you, then bending, if you can, to grab them
up, pile upon the bed, ready for the washer.
You're almost done, you're almost done,
you're almost done, stop talking and breathe,
stop crying and breathe.

Comb out your wet hair,
and there's a memory of normal,
clean, fresh hair,
a touch of mousse --
shake the can in the right hand,
spray it into the left, scoop it out with the right,
smear it on the parts of the head you
can reach as the muscles seize, don't take
the pills, not yet, you'll hurt more later,
and they really don't help, it's more a crutch
but far less useful than cane and grabber.

Music, music, as loud as can be.
You've got a half-hour,
at least, love, play your music loud, raucous,
scream that and not despair.
Bruce, "If I should fall behind,"
Nina and "Mississippi
Goddam!" and I am suddenly sure
that I am an outraged black
woman, singing my piece, and I enunciate,
with incredibly sober drunken dignity:
"This is a show tune

But the show hasn't been written for it, yet."

Then I hear that earliest of bonny Bonnie

Raitt, so clear it breaks my heart, and I am
young (coveting that head of red hair),
singing with blue's greatest
in my parents' garage.

I put on my armor,
my three rings, my three bracelets,
my four earrings, my kickass hair band,
pink with rivets. Each thing a touchstone,
a meaning that I must wear, touch, and see.
I wish to God I could pluck this unibrow
but I cannot see well enough to do it,
nor control the hand enough to pull out
hair by hair, those straggling hairs.

But enough of what you can't do,
princess, look at what you've done:
you are clean, deloused, and you certainly smell
interesting.  There's a load of wash going,
and if you don't allow yourself to slow, to stop,
there's a chicken with some meat still on its bones
the start of a marvelous stock.
We've carrots, celery,  onion, garlic,
dried and earthy things --
squashes and four kinds of peppers.

I'll wait to see what you'd like for starch, perfectly diced
potatoes or the weight of brown rice or aromatic basmati
or jasmine, maybe beans (I vote potato).There is,
not that we can find, no Italian in you, anywhere,
but you will likely ask for noodles, without encouragement.

I stir in, at the last, my great love, musty lusty
mushrooms, buttons and baby bellas, and when you ask me
if I washed them, amplifying, eyes all squinty, adding "with care?"
I turn away and lie, like always:  "But, of course,"
having wiped each one with a clean cotton cloth napkin,
having pared away the stems you so fear
(scary, scary stems).

You're afraid of strange
things, but I respect your fears,
because I have seen your courage --
still, your terror of my green Amish bentwood rocking
chair amazes me, and the sweat of your upper lip
at mere mention of hot air balloons, and, of course,
being killed by a dirty mushroom.

Should we lose each other in the shadow of the evening trees

I'll wait for you

And should I fall behind

Wait for me

When you come home, I hear the key in the door,
the ever hysterical "Honey, I'm home" done in bad Arnaz.
And I am so glad you never notice that I've showered,
though you usually call from the back, "Do you want me
to put your the wash load in the dryer?  When are we
eating?" And I remember to inquire about potato,
rices or beans, know to pause and wait for "how about pasta?"
I pick rotini instead of egg noodles, cook them separately
so as not to muck up my perfect broth,
and remind you to be better about buying
canned tomato products with added salt,
and spices.

I want my tomatoes unseasoned.

I add my own seasoning, and I love you,
and I will shower, dress, and adorn myself
with clean clothes, aromas,
talismans, prayers, and cries to the sky
as long as I absolutely can, for you.

]with thanks to The Boss]

© 2013 L. Ryan Follow my blog with Bloglovin

Spew Day

An enlightening day, on all fronts.

Fred is sick of hearing about bad news, sad news, medical news.  Fred is sick of being interrupted. Yes, Fred let it spewwww today!  So I'm sitting here, feeling that safety lies in being mute.

The last eye surgery was yesterday.  Today's pressure check on that left eye revealed a miraculously wunnerful-wunnerful result of ELEVEN. I haven't had an intraocular pressure that low in 20 years.  Is the cure for glaucoma lens replacement?  (Yes, I jest -- because the level of inflammation in that eye is apparently pretty severe, and it is hurting to the point of being bothersome.  One minor bitch; One minor moan.)

It was a rough experience this time, but nothing having to do with the wondrous orbs themselves.  I cleaned obsessively over the weekend, something I do compulsively before any surgery, no matter how small, just in case Fred has to host an Irish wake should I decide not to wake up or pull some other shenanigan or tom-foolery resulting in death.  Do I want my Aunt Nancy to sit in Marlinspike Hall's Mourning Salon, enjoy a complimentary marguerita, only to rise covered in cat hair?  Could I find a restful position in the fiery sulfurous lake knowing that one of the militant lesbian feminist existentialist members of Fred's flourishing ukulele band was distracted from comforting my dear sweet Fred because of a smudge on one of our finest shot glasses.

Anyway, I may have overdone it.  I was twitching like a twitching fool before and, again, after the slice-and-dice.  The staff was, again, wonderful, attentive, professional, compassionate... but the only solution was to get home as soon as possible so that I could eliminate the excess external stimuli (even being careful not to touch me... a surgical team kinda, sorta, has-ta touch ya!).  Even noise and lights can bring on the Grand Spaz these days, so the anesthesiologist was very cool about allowing me to leap from gurney to wheelchair and out the door.  Plus... the antispasmodics I needed, at the doses required, were at home.  I should have brought them, but it just didn't occur to me.

Once home, there was considerably more actual eye pain than the first go 'round, and that became more irritating as the itching arrived, then the small welts around the bandage.  By mid-evening, I was snarling.  First, I replaced the nasty tape holding the eye guard in place with the much kinder version made of paper.  That helped... for about five minutes.  I fairly ripped the whole apparatus off, Fred watching TV next to me with such ADHD intensity that I don't thing he realized what I was doing.  It turned out that the problem was the shield itself.  The right eye received a sweet little unobtrusive plain plastic affair, very light and made of nothing that would dare offend.  Ah, but the left eye... was covered with a metal plate and its sharp edges were protected with a protective edging of RUBBER.  Adopting the deductive brilliance of the inhabitants of 221B Baker Street, I said (pretty much to myself):  "Aha! The game is a not a foot, but an eye!" I went digging through my handy-dandy purple and butt-ugly "eye kit," and praised the Good Lord and my favorite angel, Lo!  "Look, Lo!  I managed to hang on to what seemed like a piece of useless sentimentality!  The original plain-jane version of the eye guard!"

When I speak, I do not use quite as many exclamation marks.

So after a few hours of itching and welts, the problem was mostly relieved by proper tape and and the tossing of the malicious rubber coating on the guard.

The remaining problems?  Well, the Spaz Attacks didn't stop and I spiked a big ass fever, felt like krapola, and toyed with phoning the go-to-guy.  Instead, I had some frozen strawberries and lots of baclofen.  It seemed a reasonable accommodation.

Come pre-dawn, the only remaining difficulties were... the bleeping spazzes and the freaking fever with the helpful addition of severe pain in the shoulders and hips.  By the time they'd rechecked my eye pressures (not believing the initial reading of... read it again:  ELEVEN!), someone announced, "You feel like you have a fever," to which someone else added the helpful echo, "And your cheeks are bright pink and your eyes are kind of glazed...." There just being three of us in the room, there ended the commentary, as I had nothing to add to the conversation.

No, it all mostly boiled down to "give your internist a call," which is medical CYA terminology.

I don't think I will bother him yet.  The steroid dose is being tapered down, that can create its own havoc;  The surgery may have set off a CRPS inflammatory hoe-down;  The cleaning-of-the-manor escapade may have aggravated the infection in my bones.

So my money is on feeling a bit better day by day, with worse days interspersed just for normal insanity's sake.

On the way home today, in between Fred delivering various sententious sentences, we stopped so that I could buy some cheapo-cheapo production's (remember them?) reading glasses at a large grocery. And, of course, the ever comforting and increasingly necessary plain lowfat yogurt, the equally comforting and always important hair gel for the curly headed living in high humidity, and the surgical reward treat, which turned out to be NOT CHOCOLATE.  I don't know how it happened, but Fred's surgical reward was a well-chosen tin of chocolate-covered espresso beans and I opted for the veggie chips -- beets, green beans, zucchini, that sort of thing.  Basically fried stuff covered with salt.

And -- I cannot remember the last time I set foot in a grocery store -- I got to deliver that famous line once we were home and I was stashing away the purchases:  "We forgot the milk!"

So that you are not deprived of any interesting morsel of information, since putting up the groceries, I organized the next week's eye drop schedule (turns out the right eye still needs 'em, but in different amounts) and worked on getting the fever down.  I also managed to develop, and it may have shown up here and there in this post, some resentment over Fred's righteous outbursts.  It's the delivery that gets to me... The I-have-held-in-my-suffering-longer-than-your-average-person-would-be-able-to righteousness... The I-am-such-a-chipper-and-cheery-communicator-why-can't-you-be-like-me condescension... and then there's my guilt-because-I-know-the-essence-of-what-he-wants-because-he-has-asked-for-it-before.  What I don't get, and just cannot abide, is how he turns things that are positives (to me, their verbalizer) into negatives.  This can only be by the action of HIS brain and standards.  Most of the things I discuss simply ARE, and are offered as such.  Information.

That this outburst came shortly after I informed him, happily, that sweet Hannah (my hero -- the young girl who had the rotationplasty and has now had a SUCCESSFUL BMT!) is going to be on the Today Show next week.  A cause to rejoice, I thought.

Clearly, I want to be right.  Clearly, I don't want him to be right because I don't want to be wrong. That feels the most awful of all -- never, ever should I want for dear Fred not to be right.

He's a stud muffin.  He's a sweet heart.  He's a good guy.  And he is becoming foreign to me.  I spend much time trying to arrange a life for him should I die -- because I truly don't think he has the foggiest notion of how much it costs to live, how one goes about living.  He's the guy who never repairs anything and then is shocked when things fall apart.  I obsessively clean the lint trap on the drier and note on the kitchen calendar when the A/C filter was changed.  I budget for repairs each year because I know who is gonna pay (until, of course, Captain Haddock surfaces one late autumn day in his miniature submarine, tossing about reimbursement checks as if we knew we could count on getting them to begin with... and then the grog flows, and remembrance goes, and before you know it, it's "dive, dive dive..." and the Great Cuss-Artist of the Moat descends like a drunken ghost...)

And now I am having moments of resentment -- which logically can only be expended on myself, as I am the creator of the need.

I am the ruination of Fred's life.

I just did not need the reminder.

So that was my day.  It may be that the Spaz Attacks and the Fever, plus the irritation (ever so slight) of the eyes... it may be that I am feeling as if I've no skin at all.

Oh... and then there's the whole Syria fiasco set to go off, some say, on Thursday between lunch and 4 o'clock tea.  Why we cannot turn the whole affair into an elegant but non-fussy extra-judicial execution of a Head of State, I dunno.  No one ever asks me.  I think it's a cheerful, uplifting solution.

Love you (Well, some of you. You know who you are.  And hell, if you are someone I've never even met, but need a little love, take some:  It's yours!) --

profderien  

Amie de la Bonne et Belle Bianca Castafiore, Guardien de Frédéric, et Une Personne Extrêmement Déprimante et Dépressive qui Devrait Probablement Etre Evitée à Tout Prix --

Grosses Bises!






© 2013 L. Ryan

Corey Dutina Of Pura Vida Bracelets Is A Good Egg

I'm a visual person, which makes my declining eyesight a bitch of a situation.  But mostly it's for finer stuff, like the details of a television show -- and when was the last time the details of a television show or a movie really made that much of a difference?  It's this online stuff that is getting difficult.

Well, this is ONE post that is not a woe-is-me.  Do you remember that old post, written in the middle of a long ago ManorFest, when Tête de Hergé suffered from a heat wave from Hell?  And our fridge and freezers died?  With all the beastial flesh for ManorFest at risk?  Oy, what a crisis!

We turned to the Queen of the Universe at Sears Customer Service, and then to her supervisor, for help.  Help, alas, was not easy to obtain due to... well, a host of dirty word concepts, the typical ones having to do with Customer Assistance. It was like a Carl Reiner and Mel Brooks' comedy routine, scripted back in the days of the "2000 Year Old Man."  At least on our end, there was a lot of laughter, as we were beyond tired and facing a night of roasting, and pit watching, and wild abandonment of mandatory kitchen safety measures, with half the population of the territory at risk.  Praise the Lord for On Site Universal Health Care Coverage & Catering.

Hey, take a moment and enjoy Reiner and Brooks again.  This is the stuff that makes me laugh.  I just hooted my way through three paragraphs, and hooting is where it's at... Then I will regale you with the tale of a true Customer Service Employee, my hero, Corey Dutina.

 Mel Brooks: The 2000 Year Old Man -- uploaded to YouTube byRogerBsDelaine

Let's see. My opening, irrefutable assertion was my essential visual orientation.  That extends beyond entertainment, believe it or not.

Okay, I'm sentimental.  Looking, simply looking at a meaningful something can save a moment teetering between disaster and absolutely fine.  Touchstones for the eye.

Add to that a tactile element, if possible, and it's a reminder to center, a centering focus, that goes with you everywhere.  That's right -- hand and arm wear.  Rings.  Bracelets.  It is difficult, with CRPS, to wear any ring, any bracelet, but I consider them Physical Therapy, like doing the dishes and the laundry, and giving Dobby the beloved belly rub.

Of course, I've fallen in love with Pura Vida Bracelets.  I've owned my own versions of their pricey textiles for years, and making them is probably pretty easy... but well, when I'm depressed, I spend money.  Just last night I ordered a new shower chair to replace the one with the screw that has been ripping a hole into my right haunch for months.  I'm snappy.  Taking care of business.  And so on.  This time, I got a stool that... swivels!  My back shall have equal time.

Right.  Bracelets!

First I purchased the lovely Deep Impact Pack,
shown on the right.  The colors.  The imagined sheen.  The sale price plus 20% off.







But what I had long wanted was the NEGU Charity Pack.
And it has been perpetually out of stock.  So I

put it on my Wish List -- who actually uses Wish Lists?  Then, suddenly, it wasn't a question of wanting it, it was a question of needing it.  Near the nadir (one can never be sure) of my depression, I was trying to keep good thoughts for Brayden and Ashley, and their families, as well as even more potent meditations for my darling Fred, for TW, for Grader Boob, for my mother and her blessèd relatives (myself, TW, and Grader Boob, excepted).  And I knew I was losing my own fight, weird as a fight to stop fighting can be, as a fight!

NEGU used to make me snicker in derision.

Never
Ever
Give
Up

If you had decided to give up, wouldn't the concept of NEGU, a creation to honor the mantra of a 12 year old girl dead of a brain tumor, of course, reduce you to snickers of derision?

Probably not.

I decided I needed the damn bracelet.  Mostly as a reminder of dignity, and humor, and all of the other saving graces.  Beauty.  Silence.  Mother Earth.  My responsibilities.  That stuff.

But they were never in stock, these loops of blue and white and black, a reminder to rub against my burning skin, something to focus on when I can no longer make out the details of my miniature Rothkos -- and don't even START with me about Rothko, details, and the sizing of the stuff.

So when I was applying my discount for the very available Deep Impact bracelet, I asked about how the heck to get a NEGU charity pack.  And got an unexpected reply:

Hello Retired Educator!
I could make a NEGU pack for you if you want to order it!
Let me know :) 
Corey Dutina, The Problem Solver

And from that point on, poor Corey discovered that I attract bad luck as readily as cat hair.  We went through me not trusting him, we went through my credit card being declined, which encouraged me to not trust Corey, and then, I dunno, NEGU won out... and I woke up this morning to another missive from The Problem Solver:

I will make one available on the site. Let me know when you are ready to purchase because I am only going to put one online for you!

Well, that killed my distrust, and as soon as I signed on, up popped old Corey Dutina in my lower right hand corner, asking if he might be of assistance.  Sure as tootin', the side reported no NEGU bracelets were available, but within seconds, up popped a grand total of ONE available.  I snatched it up, as much as one can when computer shopping, and thanked Corey profusely.

It's in the mail.  

So, pay attention Pura Vida Bracelets -- your employee Corey Dutina, The Problem Solver, went above and beyond the dull patina of normal customer service and onto a higher plane of shining bright platinum.  He did well.  He's a good egg.  Give him a raise, or something else that he might want.  I mean, a strange woman, who doesn't explain herself, just wrote to say she needed, more than wanted, one of your bracelets, and he made it happen, overnight.  

I am going to give up, I really already have.  But I don't have to do it painfully, for myself or for anyone else. In fact, it is required of me to strive for the opposite -- for joy, laughter, silliness.  

I'm just struggling because I've never learned to be honest, emotionally.  With all I've "learned" about centering, about sitting with what I feel, I still am driven to inflict it -- upon myself, upon others, especially those most trying to help.  Upon you.  A cruel writer to her readers, that's not helpful.  If I ever have an idea worth noting, why should you trust me?

Today was better.  Very high pain, but I tried to react differently, as in not reacting.  I took my meds, and curled up with it.  Watched fuzzy television.  Adored Dobby and Buddy, who are, it looks like, either extremely close animal buddies, or fervent feline gay boys.  They comfort each other, which is great, but Buddy, in his exuberance, keeps injuring the older, wiser Dobby -- a very small animal.  We had to goop his eye last night, and in typical Dobby fashion, he forgave us, purring and delivering head rubs with glee within the next five minutes.  His eye is still red, but the other scars he's obtained from love's blossoming are healing.

I got a bit of work done, not much, but enough to feel less like a slimy slug.  The area formerly known as the left shoulder is hot and throbbing, clearly all a-bubble with that detestable character, the gross Frank Pus. The right hip is in competition.  I'm gonna win a medal, or a ribbon, or something.

Every moment is a new start.  I may not get anywhere, but I'll NEGU my way along.

Ah... good news.  If we can swing it, I'm going to get to meet Maranda, Brayden's Mom, and hopefully, Brayden and Mason, too. Maybe next Wednesday, as fate would have us seeking medical succor at the same time in the same area.  Ah, fate!  The latest news on Brayden is that as his broken leg heals, they'll start him on some new, stronger chemo meds.  They are still scouting out possibilities for him, but he's in uncharted territory.  If you think about it, in a NEGU frame of mind, uncharted territory is a place of limitless potential.


 Jessie Rees Foundation.-- NEGU and her JoyJars

On March 3, 2011 eleven year old Jessica Joy Rees was diagnosed with an inoperable and incurable brain tumor called DIPG.  That same month Jessie started her treatment consisting of 30 rounds of radiation and daily chemotherapy at Children’s Hospital Orange County. It was also during this time she asked her parents, “How can we help them?”.She was referring to all of the other kids fighting cancer.Jessie had a burden for her peers and decided to do something about it.  She also wanted to encourage them to with her little motto “NEGU“, which stands for “Never Ever Give Up.” This simple little thought has become “Jessie’s Wish“.Jessie dreamed of the day that her little motto would become an inspiring message of hope to every child and family.Ten months and two days later, Jessie lost her fight on January 5, 2012. On that day she also left behind a global movement of compassion that her foundation continues with the support of amazing corporations, athletes, charities, volunteers and people like you!

If you skipped the Reiner/Brooks videos up above?  That was stupid.  Go back and watch 'em.

My Normal: Am I There Yet?

I'm trying like crazy to return to "my normal."  

Garderobe, Peveril Castle, Derbyshire

This is a term now in my daily lexicon -- it used to be set apart.  (In that there field, yonder, a little farther, a little farther, more to your left -- LEFT, I said -- yep!  Right there!  Good job, Dear Reader!)  It used to be confined to exam rooms.  "So, would you say you're close to 'your normal'?" might be an insightful question for Dr. Shoulderman to ask after giving me a prosthesis, taking away a prosthesis, putting in a spacer, taking out a spacer, or removing the shoulder joint altogether.


The only intelligent answer is a one-sided shrug and a heart-felt muttered: "I guess so." Or just omit the shrug.  We never wanted to hurt Dr. Shoulderman's feelings.

It's that time that comes every three years or so.  My private long term insurance company that pays me 60% of my pay, post retraction of any bit of money due any agency (even my union dues!) at the level of pay I was receiving in the year 2000.  The following year, of course, was when Fred had to stop working because "someone" had to be here to call 911 in case I didn't feel like it. [Ha?]

I'm pretty sure they surveilled us and I bet that was a grand old time for some poor soul.

Anyway, now it's pretty much as my go-to-guy MDVIP doctor promised me it would be:  "No one, ever, is going to question your need for disability coverage.  This is permanent, this is not going to get better."

He actually does have a sense of humor, this devout man.  I've heard him laugh, even inappropriately (the true test of mental health).  I've seen him hold his head in his hands more, though.  And since he and his partner left their huge group practice to go off and practice excellence, he's felt free to say he'd pray for me.

One of his best jokes yet?  I said, "I hope you had a good Passover." He responded, "Did you go to an Easter sunrise service?"

I about died laughing.

So first thing I do wrong this time -- and I'm back to talking about getting re-certified as a bona fide gimpette -- was not notifying the disability insurance company that my phone number had changed.  Oopsies. (I'm channeling Rick Perry.)  So when my "case coordinator" attempted to call, and got the old "disconnected" message, her natural assumption was that I'd grown new arms, legs, bones, and a better brain and had run off to Mexico, living high on Mexican hogs via that aforementioned 60% bounty.  Plus the extra pesos brought in by selling my mail-order drugs.

That's right. I -- me -- moi -- am a cartel.

I knew I was up to something!

Anyway, this is always a time of stress, in spite of my humor-possessing but humor-skewed beloved doctor's assurances that I am "totally and permanently disabled." This is always the juncture when the neighbors might have mailed the company that tell-all video of Fred and me waltzing on the veranda, or me jogging off to teach my early morning yoga class at the community center eight miles down the road.

Hey!  Did I tell you that I have new whatchamacallits?  Elbow crutches, you know, with the cuff the fits on your arm?  Two of 'em!  One for each side, and yes, that part is tricky.  The goal is to be able to stand for three minutes (still don't get how anyone chose "three" as a goal) which I absolutely CANNOT do -- BUT I can walk around for almost that long!  Maybe half that long!  So long as I am within crash reach of the bed or wheelchair!  It's actually pretty cool, even if annoying know-it-all people around me keep changing the various length settings on the suckers.  Fred has never been man enough to accept that I am way-y-y taller than he is.  Way-y-y.

So the forms are here for me to fill out.  I keep moving them around.  I doubt I'll be able to write legibly.  Maybe I can type out the answers, print them, and attach that to the original document?  Or do they want to see me scribble?

On the phone -- we did "connect" -- Gladys, or whatever her name was, seemed thrilled that I still had the same doctor as three years ago, as six years ago, as nine years ago.  "That makes it easier!" she crowed.
I had to pause as a vivid image of the man, his head gently knocking against the doorframe, overwhelmed me.

Like Fred, he had told me he was "overwhelmed."

Neither of them know it, but both of those moments were... sea change.  Pearls, eyes.  But it doesn't read that way, seem that way, exist that way, for Gladys.

I'm still having gastrointestinal bleeds on an ongoing basis, particularly when I don't follow the strict instructions not to take the drugs which help my bone pain the most.  I am doing so less and less, until the next time I cannot use my legs due to pain, cannot straighten them, and definitely cannot stand on them.
Here's something funny.  You know how people lose socks?  That great eternal mystery?  I lost the ankle brace that was making my right ankle fracture bearable.  No, I am NOT kidding.  And I always thought the punchline was that socks had PAIRS.  I only have the one sweet, little brace -- it has no sibling.  My theory?  It's here.  Somewhere.  Yes, that qualifies as a theory.  What do you want?  There was a thief in the night (swam the icky algae-afflicted-as-never-before moat, jumped into Marlinspike Hall via a well-used garderobe -- eww! -- bypassed the small golden museum quality pieces scattered about and took, instead, my damn ankle brace?  Here's the blatant flaw in your version, bud -- I am not sleeping, not since the return of the suicide-inducing spaz attacks.  Even the cats are staying away.  And since I've started guessing at how much insulin I might be needing, I've been in a jolly blood sugar roller coaster kind of mood.  A bit of advice for you:  don't take insulin, then half eat half a salad.  You might be unlucky enough to fall asleep.  I -- being forced awake -- simply transformed into Hulkette, snarling and green.  Fred did the bright thing and ran to get the jalapeño, red pepper-flaked with Thai chili sauce brown rice to shove down my throat... running right past the left over holiday peppermint candy.

What I dislike most about episodes of the sort?  I get paranoid afterward.  Fred must hate me.  The Domestic Staff seems distant.  Bianca has a sudden extra shift at the bar (the opera was among the first and hardest hit by Tête de Hergé's plunge into forced sequestration -- damn this proclivity for copying the politics of governing exhibited by failed and dying systems!).  Buddy came, but decided I'd be best comforted if he deposited his Maine Coon ass right where my shoulder used to be.  Buddy left shortly thereafter, as in:  Buddy fled.

I dunno.  Am I back to "my normal" or not?

What?  You afraid I'll bite your freaking head off if you try and answer?

CRPS-Related Dystonia

Integration of Sensory Force Feedback Is Disturbed in CRPS-Related Dystonia

Winfred Mugge,^1,* Frans C. T. van der Helm,^1,2 and Alfred C. Schouten^1,3

Jonathan A. Coles, Editor

Author information ► Article notes ► Copyright and License information ►

Go to:

Abstract

Complex regional pain syndrome (CRPS) is characterized by pain and disturbed blood flow, temperature regulation and motor control. Approximately 25% of cases develop fixed dystonia. The origin of this movement disorder is poorly understood, although recent insights suggest involvement of disturbed force feedback. Assessment of sensorimotor integration may provide insight into the pathophysiology of fixed dystonia. Sensory weighting is the process of integrating and weighting sensory feedback channels in the central nervous system to improve the state estimate. It was hypothesized that patients with CRPS-related dystonia bias sensory weighting of force and position toward position due to the unreliability of force feedback. The current study provides experimental evidence for dysfunctional sensory integration in fixed dystonia, showing that CRPS-patients with fixed dystonia weight force and position feedback differently than controls do. The study shows reduced force feedback weights in CRPS-patients with fixed dystonia, making it the first to demonstrate disturbed integration of force feedback in fixed dystonia, an important step towards understanding the pathophysiology of fixed dystonia.

Introduction

Humans use proprioception, vision and the sense of touch to effectively handle objects with a wide range of mechanical properties. Sensory feedback is noisy and has limited accuracy [1], [2]. In the central nervous system the sensory feedback channels are integrated and weighted to improve the state estimate[3], [4]. For example, during balance control, the relative weights of the sensory inputs from the vestibular system, mechanoreceptors and vision [5]–[7] shift with environmental properties, i.e., sensory reweighting [8]. To effectively weight sensory feedback channels, an estimate of their accuracy is required. Bayesian inference has been suggested to underlie sensory weighting [2]. Similar sensory weighting occurs between force and position within the proprioceptive system. Object stiffness, the physical relationship between position and force, allows translation from one modality into the other. When handling stiff objects like a cup, deflections are negligible so position holds no information on the applied force. However, when handling soft objects like a sponge, deflections are large and allow position feedback to contribute to the estimated force and vice versa. When stiffness is known, combining the sensory feedback of these two modalities (sensory integration) provides increased accuracy of the estimate of either force or position [9]. Position feedback is weighted heavier on soft objects (large deflections), while force feedback is weighted heavier on stiff objects (small deflections) in healthy subjects.

Complex Regional Pain Syndrome (CRPS) is characterized by persistent pain, autonomic and trophic features [10]–[12] and is commonly preceded by a minor to severe trauma to a limb in the absence of an obvious nerve lesion [11], [13]. About 25% of the CRPS-patients develop fixed dystonia featuring abnormal postures and sustained muscle contractions, of which the underlying cause is unknown [14]. Dysfunctional sensorimotor integration has been suggested to play a role in the pathogenesis of dystonia[15], [16]. The fact that many forms of focal dystonia can be relieved by “sensory tricks” is a strong indicator that sensory information is an important factor in focal dystonia [17]. In addition, several studies specifically report dysregulation of force in dystonia. Recent modeling studies on the pathophysiology of fixed dystonia support involvement of force dysregulation as the computational neuromuscular model explained all defined features of fixed dystonia only with disturbed force feedback[18], [19]. Experimentally, the force variance during isometric force tasks increased in subjects with childhood dystonia due to cerebral palsy [20]. Moreover, impairment of the ability to rapidly generate force and to voluntarily relax in patients with focal hand dystonia has been suggested to be related to down-regulation of sensory input [21], [22]. Problems to grasp and manipulate objects is a frequently encountered phenomenon in movement disorders [23], [24]. For example, patients with writer's cramp have increased grip force when lifting an object [25], [26]. Grip force adapts with sensory feedback suggesting that inaccurate grip force scaling is a manifestation of impaired sensorimotor integration[27], [28]. To study sensorimotor integration within the proprioceptive system in fixed dystonia we used a target matching paradigm where force and position were related using a (virtual) spring. If indeed sensory force feedback is unreliable, than Bayesian inference would dictate patients with fixed dystonia to reweight force and position feedback, favoring position feedback.

:

Materials and Methods

Subjects

After providing written informed consent, twenty volunteers – 10 CRPS-patients with fixed dystonia and 10 healthy controls – participated in the study that was approved by the medical ethics committee of the Leiden University Medical Center. The controls and patients were matched for age and gender (patients' mean age: 50.3 years (SD 10.3); controls' mean age: 50.8 years (SD 10.5); 1 male and 9 female in each group) and had equal handedness distribution (7 right-handed and 3 left-handed). All patients diagnosed with CRPS and dystonia were recruited in the Leiden University Medical Center (LUMC) and fulfilled the criteria for CRPS-I of the International Association for the Study of Pain (IASP) for at least one upper extremity [13].

Approach

We used a novel force-matching task that enables quantification of the sensory weighting of force and position [9]. Subjects held the handle of a linear haptic manipulator (Fig. 1) with their dominant hand (controls) or the affected hand (patients; in case of two affected arms the dominant one was used). The arm and handle were blocked from vision to exclude undesired visual feedback. The manipulator simulated a spring and switched between two spring models:

Figure 1

Experimental setup.

1. linear spring with stiffness (): exerting force , at position , according to Eq. 1:
   

   (1)
2. non-linear spring which exerts force F_target+ at the position where the linear spring would have exerted the target force :
   

   (2)

The experimental protocol, with target force  and , consisted of four blocks of trials with spring stiffnesses (). The order of the blocks was randomized and with every new block the subject performed 15 training trials with onscreen visual feedback of the force which enabled the subject to learn the task and familiarize with the stiffness. The spring relates force and position such that they can be integrated by the CNS to get an estimate of either one. The subject was instructed to operate a foot switch when an indicator bar, representing the exerted force, was aligned with the target indicators. Pressing the foot switch triggered a force measurement of 0.6 second at a sample rate of 250 Hz. After each measurement, the subject was instructed on-screen to return to the starting position, i.e., the zero-length of the spring. The next trial was automatically initiated when the subject had crossed the starting position which was indicated by the appearance of the instruction for the next trial. After training, the subject performed a series of trials composed of three trial types:

1. Reference trials where the subject was instructed to apply the indicated force using the onscreen indicators, exactly as in training trials.
2. Blind trials where the subject was instructed to reproduce the trained force blindly and to operate the foot switch when (s)he thought (s)he attained the trained force.
3. Catch trials were blind trials where the linear spring was covertly replaced by the non-linear spring. The spring model was always substituted at the zero-length position, to prevent the subject from noticing any change in force.

Blind/catch trials were alternated with reference trials to prevent drift from the trained force. On average, one in three blind trials was randomly replaced by a catch trial, effectively providing one catch trial every six trials. A total of 12 catch trials were recorded per block.

The difference in force (ΔF) between the blind trials and the catch trials revealed the sensory weighting between force and position feedback. The disparity in the spring environment allows the separate weights of force and position feedback to be determined, because in the catch trials force feedback biases the exerted force toward the trained force and position feedback toward the trained position.

Data analysis

For every trial, the measured force was averaged over the 0.6-second measurements. To prevent bias to the data due to accidental presses of the foot switch all trials with an average force of less than 5.0N were ignored. Subsequently, the force during reference, blind and catch trials were averaged over the repetitions. ANOVA's were performed to test for an effect of group on the force difference between the blind and the catch trials (ΔF) and the sensory weights. Effects of stiffness on the force exerted during reference, blind and catch trials and on the force difference between the blind and the catch trials (ΔF) as well as on the sensory weights were tested for the CRPS-patients and controls separately. Post hoc tests with Bonferroni-correction for multiple comparisons were performed on trial type.

To compare sensor accuracy, paired t-tests between CRPS-patients and their age and sex-matched controls on the standard deviation of reproduced forces with an infinitely stiff spring, and the standard deviation of reproduced positions with a zero-stiffness spring were performed. An additional paired t-test compared the ratio of the standard deviations because according to maximum likelihood estimation the optimal weighting depends upon this ratio [9].

:

Results

Fig. 2 demonstrates that both controls and CRPS-patients closely approximated the target force of 10N during reference trials with small standard deviations. In the target matching task, reference trials were alternated with blind trials in which the target force was blindly reproduced by loading a linear spring. On occasion a blind trial was covertly replaced by a catch trial with a non-linear spring revealing the sensory weighting between force and position. A significant effect of group was found on the exerted force across all stiffnesses and trial types as well as an interaction effect of trial type*stiffness.  Significant effects of stiffness and trial type on the exerted force were found for both CRPS-patients and controls. Post hoc analysis revealed that both the CRPS-patients and the controls exerted a higher force during blind trials compared to reference trials, indicating that without visual feedback of the force the subjects underestimated the exerted force.  Additionally, the force during catch trials with the non-linear spring was slightly higher than during the blind trials with the linear spring, which was significant for controls.

Figure 2

The measured forces in the three trial types against spring stiffness.

Fig. 3 presents the measured difference in force between the blind and the catch trials (ΔF). The results show that the force difference was greater in CRPS-patients with fixed dystonia than in controls.

Figure 3

:Discussion

Our findings suggest that CRPS-patients did not optimally weight the sensory inputs. Nevertheless, the CRPS-patients do show adaptation of the sensory weights with stiffness which suggests that sensorimotor integration is not dysfunctional. It seems reasonable to assume that the consistent bias toward position feedback is purposeful, indicative of reduced reliability of force feedback.

CRPS-patients with fixed dystonia produced higher forces in blind and catch trials than controls did, whereas even the controls produced high forces. In contrast to our previous study where the subjects were all male and substantially younger [9], here a scaling of the differences between the blind and catch trials was required to attain the sensory weights. We expect that the higher reproduction forces are due to the age difference, but cannot exclude gender as a factor since 9 out of 10 subjects were female (women are more predisposed to CRPS).

Certain aspects of our study correspond to previous studies on grip force adaptation with task-specific dystonia. Healthy subjects often overestimate the grip force required to lift a novel object and then adapt the force rapidly within the first three lifts [29], [30]. Interestingly, all subjects with task-specific dystonia showed this adaptation, but consistently applied higher force levels than the controls even after ten lifts when no further adaptation occurs [24]. In addition, a previous study [22] showed that patients with dystonia have similar levels of force variability to that of controls at low force levels (25% of maximum voluntary contraction). This corresponds to our finding that force variability of patients was not significantly different from controls at the relatively low target force of 10N that we used.

In a previous study we have shown that in force matching tasks with known stiffness conditions, there is no difference between position and force tasks with respect to sensory weighting [9]. To prevent unnecessary strain to the CRPS-patients in the current study only the force task was performed. Instructing a subject to reproduce either force or position can be interpreted as focusing the subject's attention to one of the two modalities, possibly weighting force feedback heavier during a force task and position feedback during a position task. Although literature has shown that attentional manipulation of a specific sensory modality does not influence the relative weighting of that modality [31], the potential bias due to the current instruction would be toward force feedback and not toward position feedback.

Here we show that CRPS-patients with fixed dystonia present significantly different reproduction forces and sensory weighting that is biased toward position feedback. Assessment of sensorimotor integration may provide insight into the pathophysiology of fixed dystonia. The current findings support involvement of disturbed force feedback in fixed dystonia.

Acknowledgments

This work was greatly enriched by interactions with J.J. van Hilten, who performed the patient inclusion from the Leiden University Medical Center. WM and AS conceived the experiments, WM collected the data with practical assistance of D.M. Rosenbrand. WM, FvdH and AS wrote the manuscript.

Funding Statement

The work was funded by Dutch Government grant BSIK03016 (http://www.agentschapnl.nl). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

References

1. Körding KP, Ku SP, Wolpert DM (2004) Bayesian integration in force estimation. J Neurophysiol92(5): 3161–5. [PubMed]

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