Saturday, July 3, 2010


We're going to miss our Sammy Boy, an excellent cat and superb friend. Dobby, his little idiot companion, is quite lost but will find his way.

Friday, July 2, 2010

Bozos on the bus

The future is fun! ... The future is fair! ... You may already have won! ... You may already be there!

I'm a great one for denial. As much as I post about CRPS research and various studies, as much as I do the moan-and-groan, I have not much wanted to know more about CRPS and dystonia.

Along with its torturous companion, neuropathic burning pain, dystonia is beginning to characterize this period of the disease (in me). It is awful, it humbles me daily, and it's time that I learned a little more about it, since denial is reaping its usual reward of... not much.

I need a primer in terminology. Spasms, tics, movement disorder. Abnormal postures. Twisting, repetitive movements. Thirteen different forms of dystonia, proper... many more diseases of which it is a symptom. Focused in one location, generalized. Hurts a little, hurts a lot.

Obviously, I don't have a primary dystonia (I'm not sure of the correct way to say that...) -- mine is secondary to CRPS, and began, in terrible earnest, last year, or seven years after the onset of the disease. From the beginning I had spasms and tics, but they were well controlled, for years, with stretching and exercise, with baclofen or tizanidine. Even when it was not well controlled with medication, the pain and discomfort was tolerable for a long while.

Now, though, the twisting and spasming covers more area -- mostly of my right leg -- and lasts for hours. The generalized violent tics are extremely painful, enough so that I cannot refrain from yelling sometimes. No matter how many times I experience them, they are always a surprise.

Researchers estimate dystonia as occuring at a rate of between 5-30% of the CRPS population. Other than that, research hasn't provided us with much information, except the usual disturbing interest in pegging dystonia as a functional, faked symptom. Thanks ever so much, researchers, for keeping that pointless application of science alive, and presumably, well-funded.

In sum:

...[D]ystonia with CRPS usually happens in the hand and causes the wrist and thumb to curl in, called flexion. In the leg, it starts in the foot, sometimes causing the toes to "claw." Researchers also noticed that patients with CRPS and dystonia tend to be younger than patients with CRPS without dystonia, and the more extremities affected, the more can be affected. Dystonia can come on gradually or it can come on suddenly. It also usually begins on the same side as the injury before the CRPS.

There isn't a connection between when the injury happened and when CRPS and the dystonia begins, so sometimes it is hard to tell what follows what. As well, it isn't known if bracing or immobilizing an arm or a leg after injury makes it more likely for dystonia to develop. Researchers have also looked into the psychological aspect of CRPS and CRPS-related dystonia, but that, too, hasn't found anything.

All the research results in there being no clear understanding of what causes some patients with CRPS to develop dystonia and not others. Because of this, no clear treatments have evolved. Medications don't seem to help and while psychosocial interventions may help some patients, they don't help all. Physiotherapy, tried with some patients, could make the situation worse, rather than better.

In another study, the researcher could not see his way to CRPS and Dystonia being co-existing disorders, not even after tossing in the adjective unusual. The good Dr. Schott, from the National Hospital for Neurology and Neurosurgery, in London, authored one of those... review articles (upper lip raised in a hapless sneer... nothing personal Dr. Schott). From this glommed together review of the glommy literature, we find:

Not all patients with CRPS develop dystonia but many do. And the timing can be anywhere from a week to five years before the dystonia starts to show up. There are a few cases where dystonia occurs first, and then CRPS develops, but it's usually the other way around.

The symptoms of CRPS may even get better as the dystonia comes on. This suggests that separate mechanisms are at play. Scientists generally agree that both problems stem from a dysregulation of the central nervous system. But exactly what happens in each condition is still a mystery.

Doctors are looking for predisposing factors for the onset of dystonia. Does it only occur when there's a bone fracture? Or is it more likely to develop when the limb has been in a cast? Does surgery trigger it? Perhaps there are genetic or environmental factors.

Right now there are more questions than answers. The complex interaction of the nervous system with the immune system and the motor system are part of the picture. What are the biologic and mechanical pathways? This remains unknown and is still the focus of many studies.

G. D. Schott. Peripherally-Triggered CRPS and Dystonia. In Pain. August 2007. Vol. 130. No. 3. Pp. 203-207.

Okay, so now I've read two oft-cited articles on CRPS and dystonia, and, as usual, feel like the exception to the rule. I also feel that familiar feeling of marginalization -- and my bullshit detector is going off.

I know that researchers cannot report what they have not researched... just as I know that calling for further study is a line not unlike "take two aspirin..." The interest isn't there because the money isn't there to stoke the interest.

Or maybe I am bitter.

Moving right along... the next bit of scholarly help I run into blithely pegs the appearance of dystonia in a CRPS patient as La Belle Indifférence, or as conversion disorder. This is a scant case study of a 46 year old woman with CRPS and dystonia after a knee injury, and who does not respond to any treatment (from Cognitive Behavioral Therapy to spinal cord stimulator; from amitriptyline to steroids; from sympathetic blocks {rolling:my:eyes} to arthroscopy). From what I can gather, this author, Dr.Fraser Duncan of University Hospital, Birmingham, Edinburgh (July 2008) relies almost exclusively on... you guessed it! The work of the good doctor Schott!

We Bozos have a saying: 'When you put on the nose, it grows.'

Ach mein gott but I am tired. I will take this up again soon... and in the interim, will rest easy knowing that there is, as usual, no one driving the bus...

Excuse me while I go twitch, spasm, twist, and scream.

The future's comin', and there's no place to hide!

Pithy bolded and browned quotes are from I Think We're All Bozos on This Bus by Firesign Theatre.

Thursday, July 1, 2010

Sarah Palin's Wild Ride!

Buckeye Surgeon apparently couldn't stomach any more of the Palin mythology, specifically the massive pile of folklore dedicated to the Untouchable Topic of Trig, even more precisely, Trig's Birth Tale.

She's Looney Tunes, and tells either a terrible fiction or an even more terrible truth.

Give the entire post, and the growing commentary about it, a read:
I'm sorry, but I just cannot resist any longer. The fantastical, magical realism surrounding the events of the birth of Sarah Palin's 5th child Trig just have to be reviewed. (Come on, there's a medical slant to the topic, right???)

Please take a moment to
listen to or read the transcript of an interview ex-Governor Palin gave to a reporter in 2008. To recap:

In April 2008, Sarah Palin was 43 years old and 8 months pregnant with a known Down's Syndrome child. She had had two previous miscarriages. For some reason she flew to Dallas, Texas to give a speech at a national governor's conference. Early in the morning on the day of the speech, Mrs. Palin states that she started to feel some cramps and noticed leakage of some fluid. So she called her OB in Alaska who apparently reassured her that everything was cool (and who now refuses to speak to anyone from the media about the incident). Again, she describes fluid leaking from between her legs, suggesting a possible premature rupture of membranes (i.e her water broke). While 8 months pregnant with a special needs child. At age 43.
[Click HERE to read the entire exposé]

Wednesday, June 30, 2010


All photos from American Idyll, a blog maintained by my eldest Brother-Unit, TW (plus the maintes beautiful contributions of ruuscal). American Idyll is dedicated to the Grand Canyon, and to the river, because, as TW notes: the river knows...

"...Let us go," we said, "into the Sea of Cortez, realizing that we become forever a part of it; that our rubber boots slogging through a flat of eel-grass, that the rocks we turn over in a tide pool, make us truly and permanently a factor in the ecology of the region. We shall take something away from it, but we shall leave something too." And if we seem a small factor in a huge pattern, nevertheless it is of relative importance. We take a tiny colony of soft corals from a rock in a little water world. And that isn't terribly important to the tide pool. Fifty miles away the Japanese shrimp boats are dredging with overlapping scoops, bringing up tons of shrimps, rapidly destroying the species so that it may never come back, and with the species destroying the ecological balance of the whole region. That isn't very important in the world. And thousands of miles away the great bombs are falling and the stars are not moved thereby. None of it is important or all of it is.
-- John Steinbeck (from "The Log from the Sea of Cortez"**)

**The Log from the Sea of Cortez is an English language book written by American author John Steinbeck and published in 1951. It details a six-week (March 11 – April 20) marine specimen-collecting boat expedition he made in 1940 at various sites in the Gulf of California (also known as the Sea of Cortez), with his friend, the marine biologist Ed Ricketts. It is regarded as one of Steinbeck's most important works of non-fiction chiefly because of the involvement of Ricketts, who shaped Steinbeck's thinking and provided the prototype for many of the pivotal characters in his fiction, and the insights it gives into the philosophies of the two men.

The Log from the Sea of Cortez is the narrative portion of an unsuccessful earlier work, Sea of Cortez: A Leisurely Journal of Travel and Research, which was published by Steinbeck and Ricketts shortly after their return from the Gulf of California, and combined the journals of the collecting expedition, reworked by Steinbeck, with Ricketts' species catalogue. After Ricketts' death in 1948, Steinbeck dropped the species catalogue from the earlier work and republished it with a eulogy to his friend added as a foreword.

Tuesday, June 29, 2010

off to the showers

I've been stuck in bed for four days now, and sad to say, it's the best place for me. Every hour, I try to get Sammy to eat and drink, settling for a bite, downright giddy should he show more interest. Getting out of bed and into the wheelchair is so painful that I bypass Salty Tears and go straight to Total Despair.

It's not my shoulders, I don't think, because they don't hurt more than normal -- and my fever is actually higher than is usual. If you really want to know, I think it's a delayed reaction to the losses achieved by virtually every one of my Wimbledon favorites.

Yes, from the Belgian women [Vera Zvonareva just defeated Kim Clijsters] to sexy Andy... from... Oh, hell. I cannot get over Andy's loss. That was likely the blow that inflamed every freaking one of my osteoporotic joints. Huge congratulations to Yen-Hsun Lu, of course. Ranked 82, unseeded, the Taiwanese player's win was his first in four years of Wimpleton competition.

There is so little known of him that you will quickly become inured to the fact that his dead father was a chicken farmer. There are only so many ways that even the most talented of journalists can find to say "son of a chicken farmer."

Roddick and Lu had played three matches prior to this, Roddick winning all three. I confess to not paying great attention to this meeting, as I suffered from Assumptions.

Still, my interest flickered when the second set went to a tie-breaker. And again, when Roddick's return of service stayed perfectly flat. The last set was clearly his best, too late. Darned son of a chicken farmer!

When Roddick responds defensively to a lesser player playing hot, he opts for predictable safety, and fails to convert, fails to aggress. He just generally fails. So while his play since returning to competition after his knee surgery truly is excellent, the mind and an inhibited strategy cannot be trumped.

Lu, on the other hand, went with a more zen approach: “Today I just take a time, serve regular, and stay with him, try to find a chance and to win the set, set by set, set by set, until end, I shaking hand and I win. Yeah, I just don’t think.”

Lu's next opportunity for mindless advancement? Novak Djokovic, in the quarterfinals.

Is there an answer to why Andy only managed to convert one of eight break opportunities or is it as simple as complaisancy, and perhaps the last piece of his particular puzzle?

Clearly, he has improved tremendously as a result of intensely rehabilitating his knee. When he is "on," there's nothing finer!

No, complacency is the wrong word. Not self-satisfied, not unaware of trouble or danger.

Not non-chalant, either -- coolly unconcerned or indifferent. Not without warmth or enthusiasm.

I am at a loss. The danger is that I will choose an outside agency -- the wind, the sun, the stress, maybe even Yen-Hsun Lu, himself.

Never underestimate the son of a Taiwanese chicken farmer.

Now that all my picks have been eliminated, whom do I now choose to jinx? Let's see... I think I'll go out on a limb and choose Serena (Venus was eliminated this morning). What can I say -- I am a daredevilish sort. On the men's side, anyone but Roger, please. I love Nadal, but am very fond of Soderling. So... anyone from that side of the draw, I guess!

Berdych, I don't know at all. Ranked 13, on paper, he doesn't look to stand much of a chance against Federer. The great news is that the paper won't be playing. The awful news is that, after his shakey first two matches, Federer has cranked everything up a notch, and pretty much destroyed Jurgen Melzer on Monday.

The dirt on Berdych is that he tends to choke... if ever there were an occasion amenable to choking, I am guessing that the Wimbledon quarters is it. *

Okay, well, I am soaked in sweat. I am going to head for the shower to desalinate.
If that wasn't already a word, it is now.

* Okay, so this would be me, a day later, eating my words. Yum, yum! Not only did he not choke, Berdych won. Meaning that he elevated his play, looked awesome, and totally embarrassed Roger Federer, who proved less than sporting during his meeting with the press afterward. Instead of acknowledging Berdych's superior play, he produced a litany of his physical woes, and claims to have "[given] the match away." You don't get to Federer's level of competence without a healthy ego, but it would be nice to see some humility. Berdych earned his win today with deep and powerful shots, great movement on the court, and great serving. Congrats to the Czech!

Djokovic will face Berdych in the semifinals, and Nadal takes on... MURRAY! Yes, he finally has broken through and you know the Brits must be going crazy...

The other shocker today -- Serena and Venus Williams were ousted from doubles competition by Elena Vesnina and Vera Zvonareva.

The women's semi is set up as follows: Serena Williams vs. Petra Kvitova and Vera Zvonareva vs. Tsvetana Pironkova. That's right -- no Venus, no Kim Clijsters, no Justine, no Maria Sharapova. It's almost as if only Serena got the memo this year...

And, just because this is my blog and I feel like it, I would like to renew my plea for women's play to extend to best of 5-set matches. Slow-starters are often doomed in the 3-set system, and matches can end in a ridiculously short period of time. Wozniacki was out in 46 minutes! Billie Jean King has been calling for parity for over 30 years now... It's time to listen to her. In 2007, she was interviewed by NPR following the Wimbledon Committee's decision to provide equal prizewinnings to men and women players.

ROBERTS: There's an argument to be made that women tennis players play best of three, men play best of five. Often the women's matches are not as tough because there's not as much depth of field and that it's not equal work. So we're not talking about equal pay for equal work. What do you - what's your response to that argument?

Ms. KING: Well, first of all, in the entertainment business you don't get paid by the hour. And secondly, we've always been willing to play three out of five sets and if anyone knows the history of Wimbledon, they would know that when women first started to play back in the late 1800s and early 1900s, we did play three out of five. But you have to remember, we played in a corset, a full-length dress, couldn't show our ankles or our wrists. and I think one of the women that was participating back in the old days fainted or didn't feel very good and therefore the all-men committee decided that they would only let us play two out of three sets.

ROBERTS: So they shortened the sets instead of foregoing the corsets?

Ms. KING: You got it.

John Henderson took on the topic during Wimbledon 2008:
The origin of women playing three rather than five sets goes back to when sports were run exclusively by men who took the patronising view that women, poor dears, could not possibly compete for as long as their male counterparts.

This attitude is changing in other sports, particularly in athletics. For years, the Olympics allowed women to run no farther than 800 metres - the 1,500 was not introduced until 1972. Now women run all the distances, including, of course, the marathon. Britain's world-record holder Paula Radcliffe has shown conclusively that stamina, which has been defined as simply the guts to go on, is not a gender thing by doing a faster time than all her male compatriots, as well as female, in the London Marathon.

Stamina, the guts to go on. I like that.