Showing posts with label ManorFest. Show all posts
Showing posts with label ManorFest. Show all posts

Tuesday, June 3, 2014

Valerian Root, Lemon Balm, and Hops

It's been a long day here at the Haddock Family ancestral manor, Marlinspike Hall.

I paid the piper for pitching in on ManorFest 2014 preparations yesterday, as well as giving the catacomb guest quarters a much needed spiffing up, unclogging one toilet and two medieval caricatures of a sink.  A few loads of laundry, trimming the hooves of our miniature Clydesdale herd, clipping the ferocious thick talons of Buddy the Maine Coon, and... well, I broke a rib.

That's a lie. I broke the rib last week.  Wednesday night, in fact, at about 10:30 pm.  It was another case of derring-do.  I showered (that's the "derring-do" part) and then reached for a fluffy towel of fetching cerulean blue (that's the "breaking the rib" part).

So my fit of physical exertion yesterday left me languishing abed today, though I always do my allotted morning chores.  Glad today not to have anyone witness me checking off those bits of manor-keeping, once done, I did my best impression of a beached whale.

It's just a rib, for Pete's sake!  Tiny bars of a cage, curvy and insubstantial. But oh, does it hurt when its delicate construction gives way.

We're fragile creatures, aren't we?

And yet, we are resilient, if fortunate enough to have grace in our lives.  Someone to pardon our blurted thoughtlessness, someone to model better behavior without underscoring how very, very stupid we can be. A Fred to offer pillows to splint the battered bones and ease the pain of breathing in, breathing out.

Though I despise the expression, I'll use it.  One of my "kids" earned his wings late yesterday.  Nolan, to use an even more disliked phrasing, fought the good fight.

He needed to die, that child, and his family was as ready as ready can be.

As if you haven't endured enough gnashing of teeth, rending of garments, and ash flying willy-nilly about this blog (worse even than cat hair is sanctified ash), I must also tell you that Brayden Martin has reached a new stage in his journey.  His cancer has returned with a vengeance in his spine, and in his precious, precocious brain.

Maranda has not told Brayden of Nolan's death.  I love Maranda -- she doesn't hide a thing, and she doesn't hide a thing because she's learned it's just a waste of precious time.  She wondered if she would even tell Brayden... but, of course, she has to tell Brayden, for Nolan was his best buddy.  But I love that she permits herself these moments that the rest of us edit out with such assiduity.

She'll worry about what to say, how best to ease Brayden into this knowledge, and she will, of course, find that her son had already begun to grieve.  Her words will be perfect, the curvature of her arms even better.

You've only to look at the two boys together last week to understand that all these difficult conversations have been prefaced by an easy, instantaneous look, a soft kiss, a knowing that precedes experience. We stifle that childhood gift at some point -- adolescence?  When we hit thirty?  As we round the turn at eighty-five?

Brayden and Nolan, May 2014

So Brayden's doctor, a very wise woman, I hear, told Maranda to take her crew and find a large body of water (with nearby swimming pools and Cabana Boys) completed by other kick-ass amenities.  So this is where they're hanging:

Blue Skies Ministries Retreat


In other news, Fred and I are weaning ourselves off of syrupy Colombian coffees and trying the lighter French roasts.  It's hard, but I think we can do it.

This year's ManorFest looks to be more of a community-driven effort than ever before, and ticket sales are booming.  Fred, however, had a severe allergic reaction to the preponderance of artisanal booth entries, and required emergency epinephrine when several local artisans waxed long about their week-old handcrafted products' patinas.  I slipped him some new wine and old cheese -- he bounced right back.

What with the devastation of Grader Boob's news, and the buffeting abuse of children running off to greener pastures, leaving us stodgy adults quite literally in the weeds, I've had a special memory of reedy, whistful singing -- a soft and breezy song used to say goodbye to a sweet friend.   I'd sing it for you but fear that la bonne et belle Bianca Castafiore might inflict great bodily harm at my off-key screeching.  So here's something far better --




I'm off to fetch some lowfat plain yogurt, with 3 packets of fake sugar (the kind dressed in blue), eight frozen strawberries, and some cinnamon.  It's the perfect accompaniment to my current Richard Russo binge, an homage to the always jesting beloved Brother-Units -- yes, both of them!

Another chapter of Straight Man under my belt, and by then, the valerian root, lemon balm, and hops from an hour ago ought to ease me out of this mournful Monday into the waiting wonders of Tuesday.

Be kind to one another.





© 2013 L. Ryan

Thursday, June 7, 2012

Endive On A Stick

Fred has been searching desperately for our Birth Certificates.  Yes, some local natural-born morons have challenged our right to squat -- even as we serve as caretakers for the entire Haddock Family and Corporation property, including its physical (born, unborn, and dreamt of) and spiritual habitants, all of whom can trace their blood lines to Canadian farmers of French origin.

The accusations stem from paranoia that we are using Haddock monies and inexhaustible talents to whip the Montréal Canadiens into even more of a frenzy than the latest Hab's free agent dabble. I mean, really, aren't we all just glad that we could reunite the Kostitsyn brothers? Sure, we have enough Stanley Cups to decorate every ballroom, guest suite, barn, and hay-strewn ice oval but does that give you any right to turn into an inbred cross-eyed drooling birther?

When stressed, Fred goes shopping, and his most recent acquisition is a new camera.  When he left the Manor mid-afternoon yesterday, scratching off in Ruby the Honda CR-V. tail end wiggling with excitement (Ruby's, not Fred's), we all thought he had gone off to grab Marlinspike Hall's fair measure of First Endive.  Belgian white endive is classic, so we loving lay its pale production down in the lowest of the dark cellars, but psst?!  Are you up on Californian Richard Collins?


Forging his European experience with his American know-how, Collins’ farm grew into the nation’s top endive producer. But it took time, just like endive.


Endive is a twice-grown crop. The first step is the planting of chicory, which grows literally like a weed throughout the Golden State. Collins started with five acres and now has 275 acres throughout Central and Northern California. The root is harvested with the bud on top. The roots are then placed in cold storage — forcing hibernation — for up to 10 months.


After hibernating, the roots are placed side-by-side in trays. The trays, stacked several rows high, are then put into the dark climate-controlled “forcing room.” The roots are fed a special liquid diet and the roots then feed the bud, which in four weeks is a little head of endive.


Collins, the president of California Vegetable Specialties in Rio Vista, said his company produced 16,000 pounds of endive in its first year. Today CVS — formerly Rebel Farms — produces approximately 4.5 million pounds of the specialty crop a year. They are expecting to reach 5 million next year.


“Now, (16,000 pounds) is a so-so day of packed product,” he said.


CVS doesn’t look like your typical farm. The 30,000-square-foot growing facility is on the outskirts of Rio Vista in an agricultural zone. However, the two large buildings look more appropriate for storing produce than growing it.


The newly finished cold-storage unit houses the hibernating roots. There are four rooms that can hold 4,000 tons of chicory roots. The unit is specially designed with an insulation R value of 100. A typical home has an R value of 20. Industry minimums are 28.


“It’s very, very well-insulated,” said Collins, who added that his hope is to be able to shut off the system during peak hours to save money and take pressure off the power grid. “It’s probably the most efficient cold-storage building in America. It’s going to be a big saver for us.


“We projected a cost model, and were running 12 to 15 percent under, so that’s good,” he added. “We’re optimistic it will continue.”


In the second building is where the magic happens: roots are “awakened” out of hibernation, placed in trays, rolled into dark rooms for several weeks and then emerge with either yellowish or red heads. The yellow in the leaves is an indication of chlorophyll, which is what makes leaves change color in fall. If endive was not grown in the dark, it would be green. Collins noted that if endive sits in stores too long it can begin to turn green because of the lights.


After approximately four weeks (some trays may take longer), the trays are removed from the dark rooms. Employees sever the endive heads from the roots, take off a few of the outer leaves so they are left with the tight inner core and package them for sale. The roots, leaves and endive that is below company standards are discarded and sent to farmers for cow feed.


While giving cows a good meal makes Collins happy, he’s more excited about feeding people and bringing awareness to endive.


“It’s great being a farmer,” he said. “It’s good and versatile. You can make a lot of salads, but it’s also good for cooking.”
Of course, Collins cannot spill all the beans, cannot reveal the role of Captain Haddock's Pink Submarine or its five sub satellites that surface now and again in the moat (and only when Certifiably Algae Free), be it to transport all of our Miniature Olympic sporting teams, their gear, and chefs, or be it to assist in the storage of Corporate Important Paper Work.

But you can believe me when I write that our bovines are by far the most cheerful bulls, cows, and calves West of the Lone Alp, and that loving on endive is sometimes a place to start in the group therapy sessions held in Loft A-3 out in the Drug Rehab Carnie Barn. Thank God for endive, beef, and addicts making such great synergy because while the peanut brittle we first had them producing (therapeutically producing, you understand) was a good product to promote -- we used preferred local ingredients, from the artisinal processed white sugar to the hydroponic vanilla bean pods -- the heat of high summer and the sticky nature of brittle, well, they produced perhaps a better fly trap than amuse-bouche.

You wanna know what's scary?  Haddock Home immediately formed a committee on the viability of peanut brittle fly traps as cute little curio thingies, strange and interesting -- and "as seen on TV."

The famous Pierre Poulin designed and built the Schvitz, mother sub to all miniature bathyscaphes, and since The Captain loves Québec and various Québécois taverns, despite the fact that robots have essentially replaced his beloved personal submersibles, he volunteereed, between shots, to channel Richard Collins' endive booty back and forth from Canada to the little moat surrounding Marlinspike Hall.

Yeah, so, anyway.  This post was supposed to be about other things.  You lucked out this time!  I'm too busy fielding messsages from tech-challenged Captain Haddock, translating barks that issue from Fred's snout, soothing Marmy Fluffy Butt and reassuring her squeaking self that no one is laughing at her for having feline herpes virus in her eyes, and providing [moist] warm flannel to apply to Bianca Castafiore's inflamed throat.

Dobby is watching me like a hawk, but not lifting a paw to help.  Buddy is watching my every move as well, believing that I have plastic bags of frozen shaved tuna flakes stuffed in my bra or taped to my lower leg.

Oh, yeah, my leg is leaking again.  I see MDVIP Go-To-Guy this afternoon to find out, possibly, why my right hip has gone to hell.  He can check out the leak and also advise me whether the pain in my chest might kill me, maybe sometime before ManorFest 2012 Prep goes into high gear.

Recipes, people, I need recipes -- what can you do with endive?



Monday, April 9, 2012

ManorFest 2012: Growing Pains

I'm making Mom's Best Peanut Brittle.  Don't get excited, it's just a recipe title.  We're testing out some of the suggestions from last week's ManorFest 2012 Planning Seminars.

When Fred and I take up scrapbooking, we are going to have whole pages dedicated to the ManorFest 2012 Planning Seminars.  So many fun mementos.  To me, these things are keepsakes, little plastic and paper memories to cherish, garnished with cheap metals.  To Fred, they are trophies. "In lieu of a Death Certificate," he says, the jokester.

ManorFest 2012 Planning Seminars were sponsored by Haddock Home and the logo was therefore imprinted on every leaking pen and environmentally disastrous styrofoam cup. (Corporate is still trying out monikers... I think Haddock Home is superb, very inviting, non-threatening.  Infinitely better than Hail,  Haddock, the Captain's favorite, or Hershey, Haddock, & Heinz, Inc, the top choice among the pungent Venture Capitalists down at the end of the conference table, right next to the main garderobe drain, the one that empties directly into the familial cesspit.)

Haddock Home name tags, alone, could take up a whole section.  You know the kind with the clear plastic cover that won't stay folded over, with the hot-glued pin that's usually a bit askew?  No, not the easy self-adhesives.  Or the new magnetic do-dads.  Not even the ones with the swiveling clip, for those days when you're not covered in pockets, or when your one badge-bearing pocket is right over your left nipple.

So much frustration, so early in this doggone post!

Don't you love finding the right words?  Those name tags were "pin-style name badges."

Yes, I did spend five minutes in the world of office supply terminology, but then, Abbot Truffatore and The Boys are in the mail order office supply business... so I have an advantage.  I get to sample their Monastery Fudge, along with a cup of their Monastery Coffee, whilst pumping the novitiate for the mystical secrets of staples, paper punches, and correction fluid.  It turns out there is no great incense-imbued Catholic Office Supply Doctrine of Transubstantiation. The Papal Bull on the topic is simple and clear:  Buy Bulk.

Photo from Home Sweet Homewrecker 
Crap.  Speaking of transubstantiation, I decided to use already roasted peanuts in the brittle... Oh, stop laughing.  Yes, I burned them.  Okay, so next time, they won't be added until my candy thermometer hits 250.  Now, what do I do with 40 gallons of burned brittle?

We are still -- as in always -- repairing walls in certain medieval sections of Marlinspike Hall.  Maybe in some of the drier areas, we could substitute my burnt brittle for daub -- you know, the classic wattle and... brittle?  Fred and Sven Feingold have come up with some amazing innovations in our efforts to maintain The Manor in authentic ways without killing ourselves in the process.  You will remember from your last encounter with the wattle and daub technique that the final lime plaster -- a lime and sand mix -- sometime refuses to adhere to the daub.  Bianca Castafiore once ended up with a weekend pass to the Mental Hospital as a result.  Well, Fred and Sven, Bianca's latest Domestic Interest, discovered that adding cat hair to the mix roughens it up enough that it sticks, and even looks naively artistic, kind of Country Bumpkin Cool.  There is, of course, a story behind the discovery, but since the cat in question survived the dip-in-the-daub encounter, healed up nicely, and, with therapy, will overcome his stress-induced flashbacks, we'll settle for naming this new and improved building resource Dobby Daub.  You remember Dobby, yes?  He is the little star-faced one, here seen in his Early Runt Days, when any cat could take a casual chew on his ear.  He's never quite lost that look of quiet desperation, and since the Daub Debacle, it's only become more pronounced.




We're trying to get Haddock Home, or whatever they end up calling themselves, to market Dobby Daub, but the most we're getting from their R&D Division is the offer of a table at ManorFest 2012, where Sven can give trowelling demonstrations and The Castafiore can show off her parging techniques -- who knew she had such a sense for texture?

As for me, my role is as the much ballyhooed Cat Hair Collector, which is what I think I've always been, anyway, except that now I have to carefully wash, dry, trim, separate by donor, and then store the silky feline contributions, a process which may soon get me my own weekend pass to the Mental Hospital.

No, You Smarty-Panted Reader, we cannot substitute the hair from any of the OverSized Herds for that of the Feline Three. (As the Hair Collector, that was my first thought, too!)  It has to do with both aesthetic and maintenance issues, as well as the hair's behavior around various oils.  A long, thick hair from Marmy Fluffy Butt's tail, for instance, can absorb twice its weight in wattle oils (an odd mix of timber resins and termite sweat), whereas an even thicker strand of Big Bo-Buffalo hair will *repel* the gooey mélange, resulting in something comparable to a curdled custard.

Forgive me if I seem obsessed with Things Culinary.  The ManorFest 2012 Planning Seminars have imparted a new, laser-like precision to my thoughts.

Unbeknownst to us, ManorFest 2011 was evaluated by the research firm Press Gainey, which is broadening its area of expertise from Optimizing Health Care Delivery Systems to Mucking Up Obscure Regional Celebrations  So it was that Haddock Home reps informed us that, according to Press Gainey results, it's not enough to offer slabs of beef, piles of fried chicken legs and our famous grilled gizzards, alongside samples of all that can be stuffed into the pork chop of an oversized pig.  Our festival goers are a famously hearty people, but we've left them, they tell us, intellectually hungry.  Now, according to The Wrinkle-Free Suits, it's the "experience" we are supposed to offer, not just a wealth of artery-clogging proteins.  Open kitchens.  Demonstrations of technique.  Celebrity cooks (we cannot afford chefs).

And it all must be done by the dictates of Value Based Purchasing.  We are literally fighting over who gets to attend the four-hour long VBP webinar.  The Abbott and I are of the opinion that Fred ought to have the honor, as he was the only one in our Management Tier to know what ROI stood for.  Bianca blushed when she was asked, thinking of Antoine Rigaudeau ("le roi"), her longtime love interest, now retired, and true source of her basketball expertise.

(Ah, my affection for the out-of-context!)

Anyway, what it all amounts to is that Haddock Homes is smiling at us with big, white teeth, and dictating major changes in how we do things in festival season, using our beloved audience of locals against us.  During a multimedia Press Ganey Performance Solutions presentation on expanding the cultural minutiae of the ManorFest 2012 Food Court, we heard, in a hundred different ways, all bulleted in lists,  that watching meat turn on a spit was hardly entertainment.  What the...?

Our rallying cry, back in the privacy of the Medieval Kitchinette?  Mais où sont les neiges d'antan?


And we threw our plastic name tags down upon our eco-friendly tamped earth floor and gnawed on cold turkey drumsticks!  Well, Fred and Sven did.  La Bonne et Belle Bianca and I had ginger tea and scones.

Given no choice by the Powers That Be, we're adapting.  We're coming around.  We're getting with the program, seeing the light, and learning the words to the anthem.  (But if you suggest to Fred that we are becoming "team players," you'd best run for the monastery, and hope there is enough room for you in the sanctuary.)

The peanut brittle is actually a good product to promote -- we're using preferred local ingredients, from the artisinal processed white sugar to the hydroponic vanilla bean pods. (We make some striking naturopathic vanilla extracts using vodka. Who needs vaccination when you could have vanilla vodka?)  But preparing sticky brittle outside, in the heat of our high summer?  Do you want to answer people who inquire about the black specks in their portion?  Shall we add an entomologist to the staffing for that exhibit?

We could always go gourmet, and claim it's chunky black pepper.

I made the mistake of wondering out loud about the feasability of brittle during a mindnumbing afternoon ManorFest Planning session, and a corporate wonk spoke up, as if in response, suggesting that we also take on chocolate covered Big-bottomed ants for the kids.  She bolstered her argument with a handout touting insects as low in fat, high in protein, and tasty as all get out when toasted.  I could have kissed Fred when he said, "Yeah, well, there's an obesity epidemic among termite eaters!"

It's tough being clever in mindnumbing late afternoon conditions.  Surrounded by wonks.

Er, the termite is a fatty snack, in comparison with its edible brethren.  Chewier, too.  It's even possible to extract termite oil.  We're thinking of making that a Marlinspike Hall Cottage Industry during the cold winters.  If we ever have another cold winter...

It's also something that may be therapeutic for the recovering Cirque du Soleil and Carnie Addicts who are housed in one of our best barns, now an accredited rehabilitation facility.  Termite oil, bottled in sapphire blue miniature carafes, might be a way for the Rehab Barn to become self-sustaining.

You know, in case they ever weary of Haddock Corporation "guidance."  Sigh.  Growth is hard.

Meanwhile, back at the ManorFest 2012 Planning Seminar, we continued to devolve in our discussion of Insects as Food.  Foreheads glistening with excitement, looking very much like they'd like to prendre une pause and go mate in the corner, the Haddock House team began making the cost analyses that would "drive" our production.  Nary a thought seemed to be given to Quality Control -- that piddly detail would be left to us, of course.

Meaningless issues like safe storage and preservation. How long can a Japanese Beetle be kept on the shelf without becoming so dessicated as to lose its cloying flavors?  Should we value texture (meaning crunch, mostly) over depth of infused flavors?  (Think garlic, anise, and papaya marinated worms, because, let's face it, worms are pretty flat, flavor-wise.)  The Abbott swears by a Mexican delicacy, caballito del diablo, dragonfly larvae, consumed alike.  That's a whole nother ball of wax.

Ethical issues, too, were blithely tossed aside by Corporate reps, you know, things which pretty much separate the toss-the-screaming-lobster-in-the-boil versus the stab-it-first-with-the-ice-pick crowd.

Bianca had to leave, nauseated merely at the thought of spending all of June catching and parboiling enough local social insects to feed the throngs in July and August.  Hand clasped to the base of her throat, The Castafiore teetered out of the room on her red-soled signature Christian Louboutin's -- the 140 mm., of course.


I'm not a fan of the round toe, and decided to sit and think about that, hoping that my colleagues would construe my far away look as one of dedication to the ManorFest Cause.  I may not be able to sport shoes any more, but no one shall rob me of the capacity to daydream about five-and-a-half inch heels.

O, God.  That's another bug, of sorts.  The Cause.  (Not the heels.)

We are to be aligned with A Cause that is yet to be determined.  None of our suggestions even made it on the White Board. (Fred and I stuck with our favorite cause, Personal Wealth.  The Abbott suggested a fund be established, in perpetuity, for the maintenance of the Holy Foreskin, which the monastics are charged with protecting. Before she wove her way back to our quarters, Bianca voted for joining forces with Save The Operatic Ta-Tas, a charitable organization dedicated to big-chested operatic sopranos. You know, the Brunhilde types, whose "body habitus" prevents decent mammography.

We were not invited, however, to the Vision Quest Seminar where The Cause will be chosen.

Harrumph, and pass the vanilla extract.




Saturday, March 17, 2012

The Hunt for Normal

I have so much to say.  I just wish it would cohere.  Also, I wish for a secretary, a non-judgmental polyglot wordsmith.  Who bakes and scrubs toilets.

Beware this sudden conviction that I have so much to say, as it comes in the wake of several days spent feverish and nauseated, and most recently, sleepless.  Fred calls me "hyper" when I get like this.  Fred also never believes me when I blame it on a fever.  Fred can be annoying.  As if there were some behavioral component to my... behavior!  Harrumph, and harrumph.

O, my Brooklyn Boy!  Annoying on occasion, almost always kind, forever driven to plumb the recesses of something called "normal."  He is doing something that I did a few years ago, though with less of a sense of mystery.  He is contacting a sibling, his younger brother, whom he hasn't seen, with whom he hasn't spoken, in forty years.

Fred's parents were monsters.  They dedicated themselves to hurting him in ways that are too imaginable, too memorable, so that today his Hunt for Normal is marred by incessant imaginings of the world's propensity for abuse, and by cascading onslaughts of memory:  a stiff leather shoe to the back of his head, a loved one's knife thrust, incessant assurances that he'd amount to nothing.

Do not make my mistakes.  Do not assume you have heard all the pertinent stories, gathered all the damning details, and assigned some sort of limit to your loved one's tensile strength.  It is shameful that I ever consider anyone immutable and static, much less Fred.


Caught up in myself, my pain, my own stuckness in stuckitude, I felt virtuous to note, several times each day, what Fred was doing, and his demeanor.  Of course, stuck in stuckitude, Fred's demeanor meant his feelings toward me, his actions on my behalf or to my detriment, and any other narcissistic point of view the moi-moi-moi-in-me could come up with.

But then dear Fred would shyly show some sign, an astringent that cut through the greasy smears, an acid that clarified what was otherwise a jumbled mess of sensations.

His eyes would be red-rimmed, the trail of tears still there on his ruddy cheeks.
Those same reddish cheeks can go pass-out pale, blotchy, bloodless.
His sobs have carried to the far reaches of The Manor but so briefly that you could choose to assign the noise some other cause, or declare that it came from the opposite direction.  You could, but you don't.  You're not yet that egocentric.

It used to be that he'd punch walls and doors, throw things [and animals], kick things [and animals], screaming himself hoarse.  He never hurt the animals, but he did scare them, and me.  It's a frightening, violent thing, Fred in the throes.

Anyway.  One night, or very early morning, the silence from his workroom felt ominous, so I ventured back there to see what was what. It being hard to sneak up on someone in a dilapidated wheelchair, Fred heard me coming, and seemed to welcome my noisy arrival. In the course of my usual inquiries, and almost in the form of complete and simple declarative sentences, Fred told me the story of the male infant who died -- a baby brother -- when Fred was just, I believe, four or five years old.

He remembers the baby, he remembers the dead child being taken from their apartment. His parents' profound grief, his own confusion. And he has somehow determined that rough point in time as the start of most of the abuse his mother, in particular, dedicated to his destruction.

A reasoning man, often reasoning to the point of absurdity, reductio ad absurdum, Fred concluded that he had somehow killed that baby, thereby so offending his parents that they branded him -- a hyperactive, intelligent, loving child -- as the source of their bad fortune.

She tried over and over to kill him, our Fred.  And though he survived, with his goodness and capacity for love intact, he also broke into pieces.  He grew into a man for whom the world was a soldered amalgam of stained, broken glass.

I don't mean to think about that unpleasantness, especially now that Fred is reaching out to his surviving brother, an occasion likely, I am convinced, to bring him great joy (as a similar instance brought me).  It's just that I see frailty pretty much everywhere these days.

Frailty pisses me off, especially when it's the best descriptor of my own state.  It means I am subject to the whimsy of even inanimate objects, of the bathroom floor, should it want to swallow me up or give my brain a good shake.  It means my will subsumed by a wad of heavy, wet, sweet-smelling clothes stuck to the speckled gray enamel bottom of the washer.  It means faceless voices suggesting "case management."  Frailty, most of all, means not being able to take care of those I love.

Right.
So.
Anyway.

The weekends are sometimes rejuvenating for Fred -- as he spends at least Sunday morning with the Sisterhood, the Militant Lesbian Existential Feminists, who are always up for a good time, or a good argument.  They're likely all a-twitter this week, given the purported Attack on Women, that wily stratagem of the Merger and Acquisition Department of the GOP.

I roll my eyes as Fred informs me that he, too, would like to impede the progress of the Violence Against Women Act, because "men abused by women are left out." I tell him this is not so, and I don't much guard my tone.  [I have terrible tone.]

I show him proof, copied from a government web site:

Q. Can A Man File A Petition For Himself Under The Violence Against Women Act?

A. Yes, VAWA applies equally to victims of either sex. 

Ergo, I am correct.

Fred counters, "Well, that isn't widely known, and besides, why can't we call it the Family Violence Act, so that inclusion is obvious?"

He's right.  The Sisterhood may look at him askance tomorrow morning during the Sharing of Our Existential Outrage portion of the worship service, but he's right.

Annoyingly right, often -- because in the Framework of Fred, gradations of right are meaningless.  It is all or nothing in FredLand.  One of his favorite things to ponder?  The joys of instructing The Wrong on the perils and pitfalls of their predilection for Logical Fallacies.  The boy practically salivates, actually believes that correcting faulty procedures and iffy premises will alter the world's swirl of unfounded opinions, that great tornado!

Do you see why I love him?  His persistence in being right is a supremely optimistic evolution for a beaten and belittled child.  He has learned, of course, that not everyone will respond to his right or wrong world view, though he clearly thinks that with a little effort, they could, and should.

I don't have a point to make, so call this a Reminder to Self, so call this a bit of a "vent."  I am always slow to venture out after a period of insulating, severe illness.  It feels like what I imagine little Dobby felt the first time he bolted out of doors and cowered, shivering, under a midday sun -- the protective ceiling is gone, there is too much air, and the boards under my feet, how did they become molten lava?

I have to relearn old lessons, for the umpteenth time.  Things like, "that's life," and "it's not about you."

If you've any to spare, send our Brooklyn Boy some openness to nuance as he sets out to build paths and bridges that safely skirt the accreted muck of generations.  And if you are a particularly gifted empath, able to sometimes project your will onto the will of others?  I love it when Fred brings me coffee in bed (Italian roast with just a smidgen of milk) and there are three dryer-loads of clothes that want folding.

Thanks for letting me ruminate, percolate, gesticulate!

Next week, Bianca, Fred, Abbot Truffatore, and I begin the task of cobbling together another wildly successful ManorFest, the premier summer event in the region west of Tête de Hergé's Lone Alp. We'd love it if former Fest-Goers would leave their suggestions for improvement in the comment section of the blog.  Bearers of the Best Ideas win free passes to The Labyrinth, with complimentary extraction provided after just 14 hours.

Friday, July 29, 2011

Major Stupidity

Major Stupidity:                                      

Most of the morning and much of the afternoon was dedicated to diuresis, and there was great success in that endeavor, with fifteen trips to the bathroom ending in the suspicion of ankles down there where the leg ends.  Oh, and all my rings fell off!  [I wear three at all times.  Unless they fall off, willful little Tolkien-cribbers.]

The dregs of this Summer Viral Thingy had my throat sore enough that I did not want to drink, and the seemingly endless trips to the WC only reinforced that reticence.  Of the things I did manage to swallow, 50% was a strong Italian roast.  The remainder was split between a Diet Root Beer and a paltry 12 ounces of water.  This is noteworthy as I normally drink too much water (according to the Go-To-Guy Doc) -- roughly 4 litres. That's water on top of coffee and 1-2 diet decaffeinated drinks.  I could try to justify this weirdness but I won't.

We are out of yogurt.  This hardly ever happens.  I need yogurt in much the way I yearn for lots and lots of water.  I popped the foil on my last container last night only to find that it was... abnormal.  That's right, my last serving (or three) of yogurt came on Wednesday night.  Please keep in mind that I am continually on antibiotics and that my gut therefore has its own appreciation of my low fat plain yogurt concoctions.  I add a preferred amount of artificial sweetener and a dusting of cinnamon, or cocoa, or a spritz of vanilla extract... Add the current novel and you have my bedtime routine in its entirety.  Of course, "bedtime" around here is a laughing-stock of a notion.  Last night?  I kinda-sorta slept from 22:30 to midnight and then again from 03:00 - almost 05:00.  When exactly was bedtime?  Now, Fred sleeps like the proverbial rock as well as the fabled log.  He came to bed at 03:00, read precisely 5 pages of his book, and then rose from the bed at... drumroll, please... 15:30!  ManorFest 2011 is sapping the boy's strength.

Oh, you thought I had forgotten ManorFest 2011?  Not so, not so.  I am just at a loss for the best words to EXPLAIN it.  It hasn't exactly been your normal ManorFest...

Okay, so... the last of today's oddities.  That would be my handling of blood sugars.  I recently became a bit hot under the collar at the price of diabetic testing supplies (one of the greatest undisclosed absurdities of Medical Economics, probably because we poorer diabetics don't want to embarrass ourselves in front of the doctors, be they Go-To-Guys or not).  My anger resulted in the brilliant decision to not test as frequently as recommended.  Like sometimes not at all.  Which is what I did today, while not eating, not drinking, taking a humongous amount of Lasix, all the while still having my usual fever and *sweats*.

The sweats and the heat (Yes!  Even here in Tête de Hergé, it's freaking hot!) consorted to make me decidedly in need of a shower.  That's a major undertaking, so I filed it under "things to consider doing later, like, when I'm feeling really weak and shaky."

What?  Why, yes, I *did* take my insulin.  As scheduled.  Right on time!  Without eating, without testing.  What?  Why, yes, I *am* a Brainiac!

(Are you still with me?)

Fred, all perky-like after his marathon sleep session, heard me whining about not having any yogurt and cheerfully volunteered to make a yogurt run -- and I bet you've already guessed that one of the Cistercians' numerous cottage/mail order industries is yogurt-making!  Put Fred and Abbot Truffatore together on a Friday evening and you have a recipe for communion wine and politics.  Jump back, Jack!  Not that there's anything around here as exciting as the debt-ceiling debacle in The States, mind you.  We have, nonetheless, our own brand of titillating government scandals.  And they just go down better, says Fred and The Abbot, with communion wine on Friday nights.  Sometimes Tante Louise totters down to the Monks' Mess and joins in, but we won't talk about that.  It's okay, though -- she has a cell phone now so there won't be any more missed "911" calls.

Not that there's much of a need for "911" calls in Tête de Hergé.

{cough}

Ah, alone in our apartment within the West Wing of Marlinspike Hall!  What a luxury.  Why not surprise Fred with a freshly scrubbed face (and feet, don't forget the feet, those things purported to be down there at the end of my legs... where are my legs?)?  Some fresh bright Gimp Clothes to tie my red face and purple feets together, and my goodness, he will faint from shock.

Which is, of course, what I did in the shower...
While alone in our apartment within the West Wing of Marlinspike Hall;
With La Bonne et Belle Bianca Castafiore on duty out in the middle of the ManorFest 2011 maze (as if she'd be of any help were she in the shower with me);
With Fred getting potted in the stolid arms of Tante Louise as the Sweet Boys sing the world a lullaby, and settle in for the night's silence.

I am fine.

Stupid, a little bruised, but fine.
Let's thank God for the shower chair, perfectly placed, as it happens.

Fred just made it home, fine purveyor that he is of all things I ever need.  I can hear him banging around in the Medieval Kitchen, shelving his purchases, feeding the felines, doing little jigs.  And Bianca's there, too -- determined to have a cup of tea despite the blanket of heat.  I think I hear The Cabana Boy, as well, humming along with the dread Jewel Song she never ceases to rehearse -- Sven's son.  Oh.  My.

Well, some catastrophes just have to happen, I guess.

I am going to finish chugging this water, then devour my sixth piece of hard, sweet candy, and go join the merriment.  Right after I verify a blood sugar above 38...

Tuesday, July 12, 2011

Recent CRPS Research

** LOOKING FOR CLINICAL TRIALS? CLICK HERE, FOR STARTERS **

I'm not feeling much like blogging these days, being about as busy as a body can be hosting Tête de Hergé's most anticipated Pity Party of the 2011 season.  Nonetheless, having run across some interesting newly published research, I did some wicked-fast copying and pasting, cogitating and perusing, and hope that you will find some of this CRPS work helpful and interesting.  I confess to having focused on aspects of this Sucky Disorder that are posing a challenge and raising questions in my life at present:  sensory dysfunction, disorder of body schema, hemilateral sensory disturbances, dystonia, and -- what the heck! -- ketamine induced liver injury!

There is some comfort in noting the many articles and topics being published and discussed -- just not enough comfort to warrant ending the Pity Party.  Maybe come August.  (Actually, ManorFest is about a week away, at which time my rabid navel-gazing will no longer be tolerated around here.  Already, people are strumming their fingers and rolling their eyes at my wailing and cultivated introspection.  I saw a preliminary ManorFest schedule in which I am relegated to working night shifts, exclusively, far from the public eye.  Harrumph.)

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Title
Comparable disorder of the body schema in patients with complex regional pain syndrome (CRPS) and phantom pain.

Author(s)
Reinersmann A, Haarmeyer GS, Blankenburg M, Frettlöh J, Krumova EK, Ocklenburg S, Maier C

Institution
Abteilung für Schmerztherapie, Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil GmbH Bochum, Ruhr-Universität Bochum, Bochum, Deutschland, annika.reinersmann@rub.de.

Source
Schmerz 2011 Jul 9.

Abstract
In patients with complex regional pain syndrome (CRPS) a disruption of the body schema has been shown in an altered cortical representation of the hand and in delayed reaction times (RT) in the hand laterality recognition task. However, the role of attentional processes or the effect of isolated limb laterality training has not yet been clarified.The performance of healthy subjects (n=38), CRPS patients (n=12) and phantom limb pain (PLP) patients (n=12) in a test battery of attentional performance (TAP) and in a limb laterality recognition task was compared and the effect of limb laterality training in CRPS patients and healthy subjects evaluated.The RTs of both CRPS and PLP patients were significantly slower than those of healthy subjects despite normal TAP values. The CRPS and PLP patients showed bilaterally delayed RTs. Through training RTs improved significantly but the RTs of CRPS patients remained slower than those of healthy subjects. In this study an equal disruption of the body schema was found in both CRPS and PLP patients which cannot be accounted for by attentional processes. For CRPS patients this disorder cannot be fully reversed by isolated limb laterality recognition training.

Language
GER

PubMed ID
21739258


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Title
Impaired Hand Size Estimation in CRPS.

Author(s)
Peltz E, Seifert F, Lanz S, Müller R, Maihöfner C

Institution
Department of Neurology, University of Erlangen-Nuremberg, Erlangen, Germany.

Source
J Pain 2011 Jul 7.

Abstract
A triad of clinical symptoms, ie, autonomic, motor and sensory dysfunctions, characterizes complex regional pain syndromes (CRPS). Sensory dysfunction comprises sensory loss or spontaneous and stimulus-evoked pain. Furthermore, a disturbance in the body schema may occur. In the present study, patients with CRPS of the upper extremity and healthy controls estimated their hand sizes on the basis of expanded or compressed schematic drawings of hands. In patients with CRPS we found an impairment in accurate hand size estimation; patients estimated their own CRPS-affected hand to be larger than it actually was when measured objectively. Moreover, overestimation correlated significantly with disease duration, neglect score, and increase of two-point-discrimination-thresholds (TPDT) compared to the unaffected hand and to control subjects' estimations. In line with previous functional imaging studies in CRPS patients demonstrating changes in central somatotopic maps, we suggest an involvement of the central nervous system in this disruption of the body schema. Potential cortical areas may be the primary somatosensory and posterior parietal cortices, which have been proposed to play a critical role in integrating visuospatial information. PERSPECTIVE: CRPS patients perceive their affected hand to be bigger than it is. The magnitude of this overestimation correlates with disease duration, decreased tactile thresholds, and neglect-score. Suggesting a disrupted body schema as the source of this impairment, our findings corroborate the current assumption of a CNS involvement in CRPS.

PubMed ID
21741321

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Title
The Specificity and Mechanisms of Hemilateral Sensory Disturbances in Complex Regional Pain Syndrome.

Author(s)
Knudsen L, Finch PM, Drummond PD

Institution
School of Psychology, Murdoch University, Perth, Western Australia.

Source
J Pain 2011 Jun 22.

Abstract
Hyperalgesia often extends from the affected limb to the ipsilateral forehead in patients with complex regional pain syndrome (CRPS). To investigate whether this is more common in CRPS than other chronic pain conditions, pressure-pain thresholds and sharpness to a firm bristle were assessed on each side of the forehead, at the pain site, and at an equivalent site on the contralateral side in 32 patients with chronic pain other than CRPS (neuropathic or nociceptive limb pain, radicular pain with referral to a lower limb or postherpetic neuralgia), and in 34 patients with CRPS. Ipsilateral forehead hyperalgesia to pressure pain was detected in 59% of CRPS patients compared with only 13% of patients with other forms of chronic pain. Immersion of the CRPS-affected limb in painfully cold water increased forehead sensitivity to pressure, especially ipsilaterally, whereas painful stimulation of the healthy limb reduced forehead sensitivity to pressure pain (albeit less efficiently than in healthy controls). In addition, auditory discomfort and increases in pain in the CRPS-affected limb were greater after acoustic startle to the ear on the affected than unaffected side. These findings indicate that generalized and hemilateral pain control mechanisms are disrupted in CRPS, and that multisensory integrative processes may be compromised. PERSPECTIVE: The findings suggest that hemilateral hyperalgesia is specific to CRPS, which could be diagnostically important. Disruptions in pain-control mechanisms were associated with the development of hyperalgesia at sites remote from the CRPS limb. Addressing these mechanisms could potentially deter widespread hyperalgesia in CRPS.

PubMed ID
21703937

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Title
Fixed Dystonia in Complex Regional Pain Syndrome: a Descriptive and Computational Modeling Approach.

Author(s)
Munts AG, Mugge W, Meurs TS, Schouten AC, Marinus J, Moseley GL, van der Helm FC, van Hilten JJ

Source
BMC Neurol 2011 May 24; 11(1):53.

ABSTRACT:
BACKGROUND: Complex regional pain syndrome (CRPS) may occur after trauma, usually to one limb, and is characterized by pain and disturbed blood flow, temperature regulation and motor control. Approximately 25% of cases develop fixed dystonia. Involvement of dysfunctional GABAergic interneurons has been suggested, however the mechanisms that underpin fixed dystonia are still unknown. We hypothesized that dystonia could be the result of aberrant proprioceptive reflex strengths of position, velocity or force feedback.
METHODS: We systematically characterized the pattern of dystonia in 85 CRPS-patients with dystonia according to the posture held at each joint of the affected limb. We compared the patterns with a neuromuscular computer model simulating aberrations of proprioceptive reflexes. The computer model consists of an antagonistic muscle pair with explicit contributions of the musculotendinous system and reflex pathways originating from muscle spindles and Golgi tendon organs, with time delays reflective of neural latencies. Three scenarios were simulated with the model: (i) increased reflex sensitivity (increased sensitivity of the agonistic and antagonistic reflex loops); (ii) imbalanced reflex sensitivity (increased sensitivity of the agonistic reflex loop); (iii) imbalanced reflex offset (an offset to the reflex output of the agonistic proprioceptors).
RESULTS: For the arm, fixed postures were present in 123 arms of 77 patients. The dominant pattern involved flexion of the fingers (116/123), the wrists (41/123) and elbows (38/123). For the leg, fixed postures were present in 114 legs of 77 patients. The dominant pattern was plantar flexion of the toes (55/114 legs), plantar flexion and inversion of the ankle (73/114) and flexion of the knee (55/114). Only the computer simulations of imbalanced reflex sensitivity to muscle force from Golgi tendon organs caused patterns that closely resembled the observed patient characteristics. In parallel experiments using robot manipulators we have shown that patients with dystonia were less able to adapt their force feedback strength.
CONCLUSIONS: Findings derived from a neuromuscular model suggest that aberrant force feedback regulation from Golgi tendon organs involving an inhibitory interneuron may underpin the typical fixed flexion postures in CRPS patients with dystonia.

PubMed ID
21609429

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Title
Drug-induced liver injury following a repeated course of ketamine treatment for chronic pain in CRPS type 1 patients: A report of 3 cases.

Author(s)
Noppers IM, Niesters M, Aarts LP, Bauer MC, Drewes AM, Dahan A, Sarton EY

Institution
Department of Anesthesiology, Leiden University Medical Center, Leiden, The Netherlands.

Source
Pain 2011 May 3.

Abstract
Studies on the efficacy of ketamine in the treatment of chronic pain indicate that prolonged or repetitive infusions are required to ensure prolonged pain relief. Few studies address ketamine-induced toxicity. Here we present data on the occurrence of ketamine-induced liver injury during repeated administrations of S(+)-ketamine for treatment of chronic pain in patients with complex regional pain syndrome type 1 as part of a larger study exploring possible time frames for ketamine re-administration. Six patients were scheduled to receive 2 continuous intravenous 100-hour S(+)-ketamine infusions (infusion rate 10-20mg/h) separated by 16days. Three of these patients developed hepatotoxicity. Patient A, a 65-year-old woman, developed an itching rash and fever during her second exposure. Blood tests revealed elevated liver enzymes (alanine transaminase, alkaline phosphatase, aspartate transaminase, and γ-glutamyl transferase, all⩾3 times the upper limit of normal) and modestly increased eosinophilic leukocytes. Patient E, a 48-year-old woman, developed elevated liver enzymes of similar pattern as Patient A during her second ketamine administration and a weakly positive response to antinuclear antibodies. In a third patient, Patient F, a 46-year-old man, elevated liver enzymes (alanine transaminase and γ-glutamyl transferase) were detected on the first day of his second exposure. In all patients, the ketamine infusion was promptly terminated and the liver enzymes slowly returned to reference values within 2months. Our data suggest an increased risk for development of ketamine-induced liver injury when the infusion is prolonged and/or repeated within a short time frame. Regular measurements of liver function are therefore required during such treatments. During repeated ketamine infusion for treatment of CRPS1, three patients developed liver injury probably allergic in nature.

PubMed ID
21546160

Friday, April 1, 2011

But who are the Dutch?

Pink Submarine courtesy of The Bunny Hop


Yesterday was a better day.  I am hoping today will follow suit, but I've been too busy putting out small domestic fires around The Manor to have the time for even a rapid assessment. 

A submarine and five sub satellites surfaced in the moat, and we are waiting for what I suppose might be First Contact, except that we're fairly sure it's Captain Haddock and the Miniature Badminton Team dropping by to stock up on supplies. 

Then the rugrat, Buddy the Kitten, managed to chew through what turned out to be an important data cable.  I know it was a data cable because it sported a green tag labeled "data cable." Sven Feingold (whom we recently discovered was the biological father of Marlinspike Hall's Cabana Boy -- which brings on a host of migraine-inspiring genetic issues... but let's leave that for another time, shall we?) -- Sven Feingold, working tirelessly on a new section of the labyrinth in preparation for ManorFest 2011, happened to be leaving La Bonne et Belle Bianca Castafiore's Very Private Apartments as I was lecturing the Bit O'Fuzz about his propensity for chewing electronics, and after a brief search in the left cargo pocket of his faded denim overalls, triumphantly pulled out four condoms, a feather duster, and a neatly bundled bit of cable, complete with the sweet green tag. 

Sugar-free banana-flavored yellow glow-in-the-dark condoms.

He's something of a Boy Scout, is Sven.

Fred and I spent a harrowing afternoon in Captain Haddock's vessel, The Schvitz, back in 2005 -- quite the feat in an area designed for single occupancy.  We made a quick run from The Moat to Le Havre, across The Channel.  We made it back to the manor in under a half-hour -- our introduction to his patented Corkscrew Technology™ that transforms the distance between large-mouthed rivers into... well, private little connecting Chunnels. 

The Captain's sub was built by Pierre Poulin of Québec and is slightly larger than his Guinness World Record model, weighing in at roughly 1500 pounds (sans Haddock).  If Fred and I could cram ourselves in there, the Miniature Badminton Team could've wedged themselves inside, no problem.  Even so, the guys have chosen to do their underwater traveling in pairs, comfortably nestled in tiny quilted goose down-lined living units that closely resemble conjoined oven mitts.  The Australian National University was *this* close to trashing their slightly defective Serafina units (the world's smallest autonomous subs, roughly 40 centimeters in length, with pink plastic hulls, and 5 size-C battery powered propulsion systems, complete with seven cute little propellers) when Haddock swooped in and purchased them for a song.  The renovations probably cost more than than the total purchase price for the five underwater crafts, originally destined for the offshore oil industry.

Did you know that a Dutchman built the first submersible in the early years of the 1600s?  Can anyone tell me who the Dutch really are?  Bonus points for pointing out the vast Dutch homeland, with a 100-word essay explaining its primary physical attributes on a contemporary, topographically-detailed globe.  Remember:  "Globes are... symbols of wisdom and you can often find them on the desks of great scholars."


Anyway.  (I wonder how long I can blame this blogging catastrophe on my penchant for ketamine?)

While waiting for The Team's laundry and List of Needed Sundries and while Buddy the Kitten is taking a well-deserved nap, I'm trying to get my head together.  If the ketamine treatments have anything to do with my improved sleep, I am already grateful.  I just need to remember how to wake up, as I usually go from a half-awake state to slight somnolence and back again in 40-minute cycles.  Now I am stringing 4, 5, and even 6 hours together without waking, time enough for well developed dreams and some restoration of spirit.

Tuesday, I thought that my hands might hurt a bit less than usual, and was trying to convince myself and every stray medical professional we came across that the infusions were, indeed, working, and that I must be close to the discovery of my personal magic number -- the lowest, most effective dose of ketamine.  Yesterday, I knew that was a bunch of hooey, but as I had already been strutting and crowing about it, tried to let the topic die a natural death.  If only Fred were a disinterested party, because the first words out of his mouth upon seeing my bright and cheerful visage yesterday morning were:  "Are your hands still better?"

So it just completely sucks that I woke this morning, after a sleep that actually qualifies as "restorative," to find my entire right hand a deep, dank purple and frosty enough to put the chilling properties of ice to shame.  Movement seems entirely normal but my perception of that movement is fucked.  My fingers feel *thick* and uncooperative, much like my right leg!

I will not have too much trouble hiding it, as there aren't many moments in the day when my right hand attracts any natural sort of attention.  The hope is that this is a passing change.

When I say the hand is cold?  I mean the hand is COLD -- "cold" capitalized, bolded, italicized, underlined, and colored arctic blue.  It burns like a mo'fo and demands an unduly large measure of my consciousness -- it's hard to ignore.

The only good thing may be that holding it cupped in my relatively balmy left hand actually feels nice.  Usually, my freezing body parts don't tolerate touch, even if logic says that the touch ought to be pleasant.  Hence, people are always annoying me with offers of luxurious socks, cashmere leg warmers, delicate fuzzy blankets, microwave-warmed bags of rice or beans or whatever... none of which can I put up with when put in contact with my body.

But warmth feels marvelous to this right hand.

To be obnoxious -- it's a calling! -- I only seem to tolerate the warmth that comes from my own left hand.

To say that I am tired of the weirdness of this syndrome is a masterful understatement.

So... I'm gonna sit here and hold my own damned hand until Haddock and The Team pop their respective hatches, then whip up some lunch for everyone.  It's hard to figure the right amount of food when the athletically talented but physically challenged miniature badminton team drops in.  I mean, they had a pre-dawn intense practice session, then made an undersea journey of considerable length (and depth)... plus they skipped breakfast, the rascals.  Factor into the equation that The Captain's appetite is famously voracious, and that Bianca has invited Sven to join us at The Captain's Table -- Sven who has mentioned several times, eyes all a-twinkle, how famished he is this morning.

We are letting most of the Domestic Staff have the weekend off.  No weekend guests are scheduled for occupancy.  Abbot Truffatore has been called to Rome (we hope it's nothing serious) and the grounds are really too wet for much earth-moving.  We're weary from running around Tête de Hergé and, since Fred has resigned from the Board of Directors to the Militant Lesbian Existential Feminist Congregation, his schedule is lighter than normal.

So I'm thinking comfort foods, comfort cooking -- baking breads, making one-pot wonders, that sort of thing.  I'm thinking spooning naps, with kittens for needed softness.  I'm thinking maybe a haircut, maybe some light cleaning in the larger ballrooms and salons.  I'm thinking a short but tasteful memorial service for Tobacco Road basketball. 

And I am ignoring my colder-than-a-witch's-tit hand and the likelihood of its lack of cooperation.

A witch's tit (or witch's teat, to use the older spelling) supposedly left a marking that witch hunters and courts would look for on the body of an accused person. Supposedly, witches would suckle their familiars, and sometimes the Devil himself, from this "unholy" body part. To find these marks, as well as insensitive spots on the skin called devil's marks--caused by the Devil's claws or teeth--the suspects were stripped, shaven, then closely examined for any blemishes, moles, or even scars that could be labeled as diabolical. To find marks invisible to the eye, the examiner would poke the victim inch by inch with a blunt needle (called a bodkin) until they found a spot that didn't feel pain or bled. Discovery of these marks or spots--one supposes they would be considered cold since they were a sign of communion with the Devil--would be "proof" of the person's dealings with Scratch, so they would be shown in full court before the execution.

From The Chive:
Amazing ice sculptures before winter’s end

Thursday, July 29, 2010

August 2010: CRPS Clinical Trials, Part One


I'm going to steal a moment away from ManorFest activities to update the blog on CRPS clinical trials that are currently accepting new volunteers.

I could use the rest.  We opened ManorMaze to the public this year and, let me tell you, if you have the bad luck to draw Rescue Duty, your dogs are gonna bark.

Written records testify that Marlinspike Hall's Manor Maze dates back as far as 1067.  Cretan Manor Jardinier Ajax Mimnermus transplanted the first thousand English Boxwood in a highly original serpentine pattern that twisted and turned over a particularly hilly, 25-acres bit of Haddock ancestral land.  Twenty-two generations later, the Mimnermus Family still holds the prestigious position of JardinierOfficiel  to the Marlinspike Manor Maze.  A proud and loyal clan, they guard our horticultural secrets with ferocity.  Both little red-headed, freckled Xenophon and his more swarthy third cousin Clinias are currently in training:  One will assume the mantle of Jardinier Officiel;  The other will be offered a lifetime position on the Landscape Crew.  Everyone wins!

Anyway, you can imagine how huge and complex this labyrinth is today, as one Mimnermus after another has judiciously added plantings, making the maze both more elegant and more challenging to exit.  (Though sometimes, I'd swear that it has a life all its own, its paths shifting in the night like sand in a storm -- but I can't prove anything.)

CRPS renders ManorMaze Rescue Duty very tiring, and my wheelchair has lost its charge more than once, over the years, leaving me to call for my own rescue. It's a restful place in which to be trapped, though, as our Illustrious Gardeners have created little enclaves of delight within -- squares dedicated to aromatherapy, curlicued paths lined with delicious mint and sweet clovers! 

[Thank the Good Lord, however, that my chair has never lost power in The Marsh installed by Xenophon's paternal grandmother, Nausicaa, who loved the dramatic tension of taming a wild landscape.  For The Marsh, she took as her inspiration Tolkien's Dead Marshes of Middle Earth.  Being a patriotic soul, Tête-de-Hergéenne through and through, she wanted to memorialize those lands that served as battlefield during the Sixth Uprising, and modeled her marsh on his Mere of Dead Faces that border one of the entrances to Mordor.  Years ahead of her time, she achieved the underwater lighting effect by solar cells and advanced the field of horticultural photovoltaics by decades.  Captain Haddock's great uncle had the forsight to underwrite her studies in Moscow with Aleksandr Stoletov -- where it is our good fortune that she witnessed the creation of the very first solar cell and was able to make such an apt application of the invention!]

Yes, I remember my promise to run down those CRPS Clinical Trials currently open -- I've not forgotten.  I've taken the liberty, as well, of excluding some studies well past their Estimated Primary Completion Date.

You will notice that some of the trials proceed from dated information. Hard science is working hard to catch up after years of studied neglect.  A wonderful resource for all of us is the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). A good place to start your research, it is a rock of stability on the internet -- which is my way of saying that you need to take care and be very frugal with your trust when dealing with CRPS information online.  There is no lack of people who want to make easy money off of people who are in pain and sleep-deprived, who are sometimes desperate for a "cure" or treatment of any kind.

The International Research Foundation for RSD / CRPS is another dependable site, but not necessarily where beginning researchers may want to start.  I do recommend familiarity with the Clinical Practice Guidelines for Reflex Sympathetic Dystrophy (Third Edition) which are available there.  If your doctors are unfamiliar with them, consider providing them with the link, or print out a copy.

Dr. Anthony Kirkpatrick opened the RSD / CRPS Treatment Center and Research Institute in Tampa just a few years ago -- the only such dedicated institute in the world.  3-day IV Ketamine treatments are available there, as well as being a site that coordinates with ongoing Ketamine Coma research in Mexico.  (Dr. Robert Schwartzman, professor and chairman of neurology at the MCP Hahnemann School of Medicine in Philadelphia helps to coordinate Ketamine Coma research in Germany.)

Dr. Schwartzman has an enlightened grasp of what day-to-day CRPS is like, and is famous for exhortations to stay involved with life -- which reminds me, I'm back on ManorMaze Rescue Duty tonight, so I'd better rest up.  I'm in charge of kerosene-soaked torches, a plum assignment.


**  Graded Exposure (GEXP) in Vivo Versus Physiotherapy in Complex Regional Pain Syndrome Type I (CRPS-I)
This study is not yet open for participant recruitment.

Brief Summary Background:  Research on the treatment of CRPS-I, as described in the Dutch evidence based treatment guidelines (Richtlijn Complex Regional Pain Syndrome type I, 2006), mainly showed improvement at the level of pain and coping with pain. Only little improvement in functional restoration was found. Research in other pain populations such al neck- and back-pain patients has shown that pain related fear contributes to the development of functional disability. GEXP in vivo which aims on systematically reducing fear of movement, shows promising results in CRPS-I patients (de Jong et al., 2005).

Objective:  The objective of the proposed project is to compare the effectivity of GEXP in vivo with that of standardized physiotherapy in CRPS-I patients with pain related fear.

Design:  The study concerns a single blinded, single center, randomized clinical trial. The treatment will be preceded by two pre-measures. After treatment there will be one post-measurement and 3, 6 and 12 month follow-up measurements.

Population:  The study population will consist of chronic CRPS-I patients between 18 and 65, with pain related fear (PHODA-LE-score ≥ 35 and PHODA-UE-score ≥ 32).

Intervention:  The two interventions that will be compared are GEXP in vivo (de Jong et al., 2005) and standardized physiotherapy according to the protocol of Oerlemans, Oostendorp, de Boo en Goris (1999). The GEXP in vivo comprises 17 sessions of one hour, the physiotherapy treatment of 34 sessions of 30 minutes. Both treatments will be given over a period of 17 weeks.

Inclusion Criteria:

1.Diagnosis CRPS-I according to IASP criteria.
2.Pain related (PHODA-LE-score ≥ 35 and PHODA-UE-score ≥ 32)
3.Age between 18 and 65.
4.Rehabilitation treatment has been indicated.

Exclusion Criteria:
1.Pregnancy.
2.Insufficient fluency in Dutch.
3.Generalized pain syndrome.
4.Dystonia.
5.Sympathectomy of the affected extremity.
6.Psychopathology
7.Involvement in a claim regarding the disease.
8.Substance abuse.
9.Symptoms on both upper or both lower extremities.
Principal Investigator: Dr. M. Goossens, Maastricht University
Contacts:
ICMJE Contacts:
Tim Gard, M.Sc. +31 43 3881594 T.Gard@dmkep.unimaas.nl
Marielle Goossens, Dr. +31 43 3881477 M.Goossens@dep.unimaas.nl


**  Study of Proteins Associated With Complex Regional Pain Syndrome

The etiology of Complex Regional Pain Syndrome (CRPS) is unknown but a patient typically presents with a triad of clinical findings: sensory abnormalities, perfusion abnormalities and alterations in motor function. Since some of these findings are seen in the other disease states, the diagnosis is often not clear. A response to a sympathetic ganglion block (stellate or lumbar) is also suggestive of the disorder. However, there is no definitive diagnostic test for CRPS. Experience has shown that early aggressive treatment improves the prognosis. Therefore, tests that facilitate the early diagnosis would have important clinical implications.

Advances in laboratory techniques allow analysis of clinical samples to identify protein or patterns of protein changes associated with a disease state. Patients suffering with CRPS who are currently seen in a pain clinic will be asked to participate in this study. The subjects will complete a brief symptom survey, be examined by a co-investigator to document sensory, temperature and trophic changes, and have a blood sample collected for protein and gene expression (RNA) analysis. Blood samples from age-matched controls will be collected from non-CRPS patients. Fifty patient samples collected from each group will be analyzed and used to teach the diagnostic software and an additional 20 samples (10 controls, 10 CRPS patients) will be used to validate diagnostic accuracy.

Brief Summary: This study will try to learn more about complex regional pain syndrome, or CRPS (previously known as reflex sympathetic dystrophy, spreading neuralgia, and sympathalgia), by examining the release of small proteins in the blood of patients with this condition. Patients with CRPS usually have three types of symptoms:

•Sensory abnormalities - increased sensitivity to pain or a painful reaction to a harmless stimulus
•Perfusion abnormalities - alterations in blood flow, temperature abnormality, swelling, decrease or increased nail growth, and hair and skin changes
•Motor abnormalities - weakness, guarding (Holding the limb in such a fashion that it minimizes accidental or intentional contact from possible sources of pain), and atrophy (wasting)

The cause of CRPS is unknown, and there are no definitive diagnostic tests for the condition. Because early treatment improves the prognosis of CRPS, a test that enables early diagnosis would be important for optimal medical management. The findings of this study may contribute to the development of such a test and possibly new drug treatments.

Additional Reading/Publications:
Cancer proteomics: from biomarker discovery to signal pathway profiling.
Molecular classification of cutaneous malignant melanoma by gene expression profiling.
Value of autonomic testing in reflex sympathetic dystrophy.

Study Sponsor: National Institute of Nursing Research (NINR)
Contact: Patient Recruitment and Public Liaison Office (800) 411-1222 prpl@mail.cc.nih.gov

Contact: TTY 1-866-411-1010

Original Primary Outcome Measures: To determine the hepatic progression free survival of pts with melanoma metastatic to liver in pts treated with percutaneous hepatic perfusion of melphalan with subsequent venous hemofiltraion (PCP) versus best alternative therapy. 
HISTORICAL VERSIONS OF THIS STUDY


** The Effect of Transcranial Direct Current Stimulation (t-DCS) On the P300 Component of Event-Related Potentials in Patients With Chronic Neuropathic Pain Due To CRPS or Diabetic Neuropathy
This study is not yet open for participant recruitment.'
Intervention:  Device: TDCS/sham procedure on five consecutive days  

The latency and amplitude of P300, subjective pain intensity, and pain thresholds for tactile and thermal stimuli will be determined at before and 15 min and 120 min after the 1st and 5th tDCS/sham procedure, To receive tDCS/sham treatment, two electrodes will be placed on the patient´s skull (for details see section Methods) and the patient will rest for 5 min. After that, the patient will receive 20 minutes of 2 mA tDCS/sham. Subjective pain intensity, and pain thresholds for tactile and thermal stimuli will be determined before-, 15 min after and 120 min after each tDCS/Sham procedure. At the 1st and 5th tDCS/Sham session, the latency and amplitude of P300 will be determined before-, 15 min after and 120 min after the tDCS/sham procedure.

Inclusion Criteria:
•Affected an upper limb or lower limb
•CRPS-related neuropathic pain with a score for "worst pain in the last 24 hours" ≥4 on a numeric scale 0-10
•Must meet CRPS diagnostic criteria (Sandroni et al., 2003) with the application of the IASP criteria as adapted by Bruehl et al (1999):
1.Continuing pain which is disproportionate to any inciting event,
2.Must report at least one symptom (symptoms here are reports by subject) in each of the four following categories: sensory, vasomotor, sudomotor/edema, motor/trophic;
3.Must display at least one sign (signs here refer to objective observation/testing) in in each of the four following categories: sensory, vasomotor, sudomotor/edema, motor/trophic;
•tDCS naïve
•OR
•Affected an upper limb or lower limb
•Diabetes-related neuropathic pain with a score for "worst pain in the last 24 hours" ≥4 on a numeric scale 0-10
Exclusion Criteria:

•Serious health problems other than CRPS or Diabetic Neuropathy (e.g. uncontrolled hypertension, uncontrolled diabetes)
•Pain/painful conditions unrelated to CRPS or Diabetic Neuropathy
•Pregnancy
•History of seizures/epilepsy
•Implanted device (e.g. pacemaker)
•Active illegal drug/alcohol abuse
•Unable to follow directions or complete tools in English
•Previous exposure to tDCS stimulation

Contact: Pesach Shvartzman, MD 972-8-6477429 spesah@bgu.ac.il  [ISRAEL]
Prof Pesach Shvartzman, Ben-gurion Univeraity of the Negev
Soroka University Medical Center


** Intravenous Immunoglobulins in Complex-regional Pain Syndrome
This study is not yet open for participant recruitment.
The purpose of this study is to determine whether intravenous immunoglobulins are effective in the treatment of complex-regional pain syndrome.



CRPS, a chronic pain syndrome associated with trophic disturbances is a frequent complication after limb trauma. More than one third of the CRPS will continue to chronic disease including loss of function in one limb. Some reports implicate an autoimmune pathogenesis of CRPS. Especially the finding of autoantibodies against peripheral neurons and successful treatment in single cases provide evidence for a possible successful treatment of CRPS with intravenous immunoglobulins (IvIg). Therefore IvIg may be an important anti-inflammatory treatment to prevent severe chronification of CRPS. Since IvIg is mainly effective in B-cell-mediated autoimmune diseases, autoantibodies against autonomic neurons and the concentration of B-cell activating factors BAFF and APRIL will be measured in the course of the study.

Intervention: intravenous immunoglobulins

0.36-0.44g/Kg IvIg intravenous, 3x, every 4 weeks
Other Name: Gamunex 10%

Inclusion Criteria:
•CRPS 1 (according to the IASP criteria) between 6 weeks and 6 months after diagnosis

•skin temperature of the affected side equal or higher than on non-affected side
•no change of the analgetic or co-analgetic medication within the last 10 days

Exclusion Criteria:
•Immunosuppressive or immunomodulatory treatment within the last three months
•CRPS previously treated with sympathetic block, lidocaine patch, local DMSO, spinal cord stimulation, intrathecal drug administration
•Known immune-mediated neuropathy (CIDP, MMN, MADSAM)
•Selective IgA-deficiency
•Severe heart disease
•Tumour disease in the last 5 years
•Allergy against Gamunex 10%
•Chronic renal disease Vaccination with live vaccine within the last three months
•Member of another clinical trial within the last 3 months

Responsible party:  Franz Blaes, MD, Dept. of Neurology, Justus-Liebig-University, Am Steg 14, 35392 Giessen, Germany -- University of Giessen
Contact: Franz Blaes, MD +49-641-99(0) ext 45357 franz.blaes@neuro.med.uni-giessen.de
Contact: Marlene Tschernatsch, MD +49-641-99(0) ext 45400 marlene.tschernatsch@neuro.med.uni-giessen.de

Related publications:
Autoantibodies in complex regional pain syndrome bind to a differentiation-dependent neuronal surface autoantigen.
Intravenous immunoglobulin response and evidence for pathogenic antibodies in a case of complex regional pain syndrome 1.

**  Neurotropin to Treat Chronic Neuropathic Pain
Brief Summary: This study will examine the effectiveness of the drug neurotropin in treating chronic pain after injury to a limb or a large nerve.


Two groups of patients will participate in this study: patients with complex regional pain syndrome type 1, or CRPS-I (also called reflex sympathetic dystrophy) and patients with complex regional pain syndrome type 2, or CRPS-II. CRPS-I is pain that develops after relatively minor injury to an arm or leg, but lasts much longer and is much more severe than would normally be expected. CRPS-II is pain resulting from injury to a large nerve. Candidates will have a history and physical examination, blood tests, and electrocardiogram. Participants will undergo the following tests and procedures:

Patients with CRPS I and II will receive an individualized regimen of physical therapy and standard treatment to control their pain. In addition, they will receive neurotropin or placebo tablets for 5 weeks, then no trial medicine for at least 1 week, and then the other trial drug for the next 5 weeks. That is, patients who took placebo the first 5 weeks will take neurotropin the second 5 weeks and vice versa. Neither the patients nor the doctors will know who received which drug during the two intervals until the study is over. Patients will complete questionnaires about their pain, quality of life, and ability to perform daily living activities. They will have various tests to measure pain (such as sensitivity to heat and cold, to an electric current, to a mild pin prick, etc.); to provide information about changes in their condition (such as tests of range of motion of joints and limb size); to measure blood circulation and sweating in the arm or leg (such as measurements of blood flow to the limb, skin temperature, and sweat production), and other procedures.

Detailed Description:  Patients with Reflex Sympathetic Dystrophy (RSD), re-named Complex Regional Pain Syndrome, type I (CRPS-I), have chronic, post-traumatic pain that spreads beyond the distribution of any single peripheral nerve without evidence of major peripheral nerve damage. A similar disorder, Causalgia, re-named CRPS-II, presents with clear evidence of nerve injury. No successful drug treatment exists for these disorders. Neurotropin is a non-protein extract of cutaneous tissue from rabbits inoculated with vaccinia virus. Neurotropin has been used extensively in Japan to treat RSD and other painful conditions; however, the drug has not undergone clinical therapeutic testing in the United States. This protocol is to carry out double-blind, placebo-controlled, crossover studies about clinical efficacy of Neurotropin for acute pain in dental outpatients and for chronic pain in outpatients with CRPS-I or II.

Related publications:
Reflex sympathetic dystrophy: changing concepts and taxonomy
IASP diagnostic criteria for complex regional pain syndrome: a preliminary empirical validation study. International Association for the Study of Pain.
External validation of IASP diagnostic criteria for Complex Regional Pain Syndrome and proposed research diagnostic criteria. International Association for the Study of Pain
 
Responsible Party: Raymond A. Dionne Jr., D.D.S./National Institute of Nursing Research, National Institutes of Health

Study Sponsor: National Institute of Nursing Research (NINR)
Contact: Patient Recruitment and Public Liaison Office (800) 411-1222 prpl@mail.cc.nih.gov

**  Pregabalin Versus Placebo as an Add on for Complex Regional Pain Syndrome (CPRS) of the Upper Limb Managed by Stellate Ganglion Block (The PREGA Study)

Intervention:
•Drug: Pregabalin

Dose of 150mg/day divided in two doses. Increased to 300mg/day then to 600mg/day, always divided in two doses for the day.
Other Name: Lyrica
•Other: Placebo

Study Arms / Comparison Groups
•1: Experimental
Pregabalin group is made up of 20 patients. Patients will receive 150mg/day in two divided does. The patients will be assessed weekly and the dose can be increased to 300mg/day, if the patient does not report any decrease in pain. The following week the dose may be increased to 600mg/day if once again the patient reports no decrease in pain. This is also the maximum permissible does that will be given to the patient. If patient reports any side effects then the dose can be decreased once. The time period of 2 to 5 weeks will be the dose adjustment period. After which the drug maintenance period extends from week 5 to 12. All doses will be given in two divided doses/day.
Intervention: Drug: Pregabalin

•2: Placebo Comparator
Ten patients will be be in the placebo group.

Related publication:  Efficacy of pregabalin in neuropathic pain evaluated in a 12-week, randomised, double-blind, multicentre, placebo-controlled trial of flexible- and fixed-dose regimens.

Responsible Party: Dr. Norman Buckley, MD, McMaster University/Hamilton Health Sciences

Study Sponsor:  Hamilton Health Sciences
Collaborators: Pfizer

**  Use of Compression Glove to Prevent Complications After Distal Radius Fractures: a Randomized Controlled Trial

Brief description:  Distal radius fractures (DRF) are the most common type of fracture in the human body, and a large proportion of DRFs result in complications. Previously proposed preventive strategies have questionable efficacy and may impose additional risks on the patient. Because many complications secondary to DRFs are associated with excessive swelling, a prophylactic means for edema reduction could dramatically reduce morbidity among this population. A compression glove is a non-invasive, non-pharmacological way to reduce edema. Previous studies have confirmed its utility in edema reduction after hand trauma and among patients with chronic inflammatory conditions, but none have sufficiently investigated the application to patients with DRF, a population in which this intervention could have a large impact. The investigators propose a RCT to evaluate use of a compression glove during recovery among patients who have sustained an unstable DRF. The investigators hypothesize that patients who wear a compression glove after a DRF:

•Will experience less edema
•Will demonstrate greater functionality
•Will recover more quickly
•Will have lower incidence rates of carpal tunnel syndrome
•Will have lower incidence rates of complex regional pain syndrome
Study arms:
•Compression glove: Experimental

Patients in this group have a compression glove incorporated into their splint for 2 weeks post-op, and wear a glove underneath their cast for 3 weeks. The patient then wears the glove at night after cast removal.
Intervention: Device: Compression glove
•Control: No Intervention
Patients in this group undergo standard recovery procedures. This includes a splint worn for 2 weeks post-op, followed by a short arm cast worn for the next 3 weeks
Inclusion Criteria:

•Male or female
•Between the ages of 18-85
•Patients with unstable unilateral distal radius fractures (requiring surgical stabilization)

Exclusion Criteria:
•Pre-existing cases of carpal tunnel syndrome and/or CRPS
•Nerve or tendon laceration
•Decompression of carpal tunnel concomitant with surgical stabilization
•Additional fractures, including carpal fractures, more proximal fractures of the radius, and finger injuries will be excluded from the study (Ulnar styloid and ulnar head and neck fractures will be included)
•Uncontrolled rheumatoid arthritis patients
•Bilateral fractures
•Unable or unwilling to provide written informed consent.

Responsible Party: Michael Shuler, MD, J&M Shuler, Inc.

Study Sponsor: J&M Shuler
Contact: Michael S Shuler, MD 706-424-8438 msimmss@hotmail.com



(TO BE CONTINUED...)