Thursday, February 26, 2009

Brooke on the mats

White-Knuckle Life

A day or so ago, after the blog about Brooke’s managing to grasp the talcum-powder container and hold it off the table for 15 seconds, I got an e-mail from a friend saying, “you must be thrilled about the grasping.” It arrived at about midnight, perhaps accounting for my bleak mood, and I found myself answering, “Yes, I am thrilled about the grasping. But of course in addition to news about grasping you didn't see news about gasping, when the trach comes accidentally unfastened (happens more often than you'd ever want to believe), or about how right in the middle of happily watching Obama tonight he could go from beamingly contented into a respiratory crisis. I mean, real crisis. This is not a life for wimps. But things were okay when I left the hospital an hour ago and there's a truly great nurse on tonight—“
Things are like this: Contented (as far as possible, under the circumstances, and ignoring the ever-present discomfort) and optimistic one moment or even for some hours in a row, then white-knuckle the next, and you can never tell when the next episode of real pain or spasm or dysreflexia or respiratory crisis is coming. The rehab staff is pretty good at responding almost instantly to these things, but they happen nevertheless. It’s a bit of a reminder of the way this whole thing started, a bike ride up a familiar canyon, a brilliant autumn afternoon, the wind whistling (I assume) in one’s face, and then blam!--the world changes.
Just the same, despite these setbacks, there’s progress. There’s a little more motion in the right hand, not just the thumb but also the middle finger; there’s sensation on the inner thighs and calves; and he can feel it when the suppository is inserted for bowel care (sensation in this region is particularly significant, since it’s at the bottom of the spinal cord). And he’s been working hard on the mats in the gym—just yesterday, under the care of the physical therapists you see in the photo I hope will be attached here, Rob and Paul, he managed to hold his trunk upright, arms braced behind his back, for at least five minutes—a huge milestone, they said.
Even more important is cognitive function: while there are still periods of stress-induced, sleep-deprived, or drug-associated confusion (as for example when somebody was reading Wittgenstein to him the other day, something he normally loves), he has also got times of wonderful lucidity, including a whole book mapped out in his head. He says that as his mind gets clearer he’s got a much clearer picture of all the assistance he’ll need—but, of course, that’s where you all come in. Already, a couple of computer-minded folks are learning Dragon Naturally Speaking, the voice-activated program that lets you just talk to the computer and produces written text on the screen, and meanwhile, others are hatching plans for Getting Brooke Into His Garden (this will be an exciting contest!). He will move on Tuesday March 3 to the skilled nursing facility at South Davis for (my guess is) a month or maybe two; it’s just a 13-minute drive from their house, according to friends who live on Capitol Hill, so this isn’t out of range at all (and because of their more relaxed program, he’ll welcome visitors even more—just call me, 801-824-9160 and I can tell you how to get there). And vent weaning is still going forward, so in spite of the white-knuckle moments there’s plenty to celebrate.

Sunday, February 22, 2009

Less Pain, More Progress, Heavy Lifting

Less pain, wow. And more progress. Progress in vent weaning (details in a future post, both about what’s happening now and about what can be expected when he gets to South Davis, for the further stages of vent weaning.) Today, though, it’s about the left hand.
There’s an item taped to the wall in Brooke’s room now, among the hundred cards (and they’re still not all up yet)—it’s a little plastic talcum-powder bottle, partly empty, so it doesn’t even weigh the couple of ounces it did when it was full. But it’s an historic item now, inscribed with magic marker: “First Item Picked Up, Feb. 21.” It wouldn’t be heavy lifting for anybody else, but it is a big achievement here: the thumb and the forefinger on the left hand managed to grasp it and hold it off the table for a full 15 seconds.
And there’ll be more news soon: we’ve finally learned who the flight nurse was who saved Brooke’s life at the time of the accident. Remarkable, wonderful, to meet with her. Details soon. You’ll like her.


Sunday, February 15, 2009

The purpose of pain?

Muscle spasms have been part of Brooke’s life for some time now—sometimes they’re small, sometimes they make his legs jerk off the bed—and, more recently, neurologic pain. These things are apparently part of the natural landscape of spinal cord injury, but the question is, what do they mean? There’s been lots of debate around here, and clearly no uniform, canonical answer. But a colleague in the Psychology Department here has sent a passage from the book he’s about to publish, and Brooke has asked me to post it on the blog. It invites enormous optimism. Here goes:

Excerpt from Alan Fogel (forthcoming, September, 2009). The Psychophysiology of Self-Awareness: Re-discovering the Lost Art of Body Sense. New York: W. W. Norton.

Twitching: Initial integration of the body schema

Most vertebrates during the prenatal and newborn period show spontaneous muscle contractions called myoclonic twitches (myo=muscle, clonus=contraction). Fetal twitches create electrical and chemical discharges in the not-yet-innervated peripheral muscles. These discharges help the nerves growing from the brainstem and spinal cord to find their targets in the muscle proprioceptors and motor neurons, linking brain and body. Once the neural connections are made, twitching continues to help calibrate the body schema by detecting limb weight and distance from other parts of the body (Khazipov et al., 2004; Petersson et al., 2003).
These twitches tend to occur when the fetus or newborn is in a completely relaxed state during sleep. They are often synchronized across different body regions so that an arm and a leg may twitch at the same time. Twitching appears to be generated by different regions of the spinal cord, brainstem, and brain working in synchrony. This synchrony between different parts of the nervous system and different parts of the body may be a built-in process that allows one’s body schema to develop via somatotopic experience dependent connections. Twitching can induce activation in the SS and motor cortices in the somatotopic areas where the moving body part is represented (Kohyama & Iwakada, 1991).
After the newborn period, twitches decrease in frequency because voluntary motor exploration of the world during waking states plays an increasingly important role in the body schema formation. If infants have brain stem immaturity, however, twitching will continue for several months longer, apparently allowing the infant to use the built-in spontaneous movements to catch up from any delays in voluntary movement control (Kohyama & Iwakada, 1991). Twitching, in other words, seems to be an essential mechanism to start the development of neuromotor links that introduce one body part to another and serve to integrate the body schema.
Is twitching important for older infants, children and adults? Typically, twitching after the newborn period is inhibited by centers in the brain and brainstem because it can interfere with experience dependent learning from normal, and preferred, voluntary movement. When there is brain damage, however, twitching may be one of the symptoms observed. On the other hand, if there is damage to the peripheral nervous system, electromagnetic stimulation to the peripheral nerve to induce twitching has been used as a treatment to assist the cortex to find, re-map, and thus re-integrate, the body (Turton et al., 2007).
One patient described in the literature had lost sensations of touch and muscular proprioception due to damage in the brain from a viral infection. Stimulating a twitch in the patient’s forefinger allowed him to eventually move the finger voluntarily (Cole & Paillard, 1995). Similarly, stimulating a somatotopic motor area of the brain electrically can induce an involuntary twitch in the related muscles (Lewis, J. W., 2006). In normally functioning adults, active sleep, which includes rapid eye movements and occasional twitches, is responsible for “physiological restoration” and integration across neural circuits (Blumberg & Lucas, 1996).
I have observed twitching in some of my clients during Rosen Method Bodywork sessions. These clients in particular report that they have little felt awareness of particular parts of their bodies. Chronic tension in those muscles damp sensation from the proprioceptors so that the person may not be able to feel my hand touching their upper back or their legs. These impairments in the body schema often result from prior trauma leading to the muscle tension (habitual defensive postures) and thus a suppression of self-awareness.
As their muscles begin to relax during treatment and as they report increasing awareness of those “missing” body regions, they sometimes twitch involuntarily. This does not appear to be a random discharge since, at least in my experience, it only occurs as the body is shifting to a relatively novel (for that client) state of relaxation and as awareness is increasing.
My guess is that the neural pathways normally responsible for proprioception, having been neglected from disuse, are once again sending signals out to other parts of the body to help “find” the lost connections. Reconstruction of the body schema following disorders of embodied self-awareness, then, may re-activate the same spontaneous prenatal and neonatal nervous discharges that were used to construct the body schema in the first place. Embodied interventions work best when they can activate the body’s own intrinsic neuromotor growth processes.


In the blog posted yesterday I’d remarked that after the pain seemed to be receding “we’re back to optimism mode.” When I read this to Brooke he said he’s never in pessimism mode, always in optimism mode, even when the pain is bad. And there’s reason to be optimistic: he now can feel light touch in various parts of his body, including his calves, inner thighs, left hand (that’s been the case for a long time), and as of yesterday, his abdomen, and today, his right Achilles’ tendon. This is sensation, not (yet) function, but just the same it’s tremendously exciting, even as we try to keep optimism from spinning out of control and realize that at the moment he’s still almost completely paralyzed. Just the same, as Colin Powell once remarked, “optimism is a force multiplier,” and while the political circumstances might not provide the best analogy, we’re all well aware of the role optimism can play. Somebody asked Brooke the other day about depression, perhaps knowing Brooke’s extensive experience with it, and he said “I’m not depressed. I can’t afford to be depressed.” Optimism, we all think, is a much better medicine. (Thanks all of you for contributing to it!)

Saturday, February 14, 2009

“Get Brooke Into His Garden” Design Contest

Even though it may be some time before Brooke is able to come home—hard to estimate at the moment—when he does we’ll face a dilemma: he loves the garden next to our house, but won’t be able to get to it. After all, the deck it three or four feet above the garden, and at the moment he couldn't even get to that. Then to get to the garden itself you have to go down a set of stone steps: it won’t be possible to navigate these in a several-hundred-pound power wheelchair, and even if you could get down the steps you couldn’t drive around on the grass. So here’s the challenge: design a way for Brooke in his chair to get down into the lower part of the garden, keeping in mind the various constraints: the grade for a path can’t be greater than a certain number of inches per feet, there has to be stable paving of some sort, there have to be spaces for eating and entertaining, there has to be room to relax and smell the roses, and of course that means there have to be roses somewhere. And there’ll have to be other flowers and plants as well. Maybe even whatever attracts birds and keeps the quail we now have still coming. So are you game to rise to this challenge? It’s a contest. Our architect friend (who designed the extension to our living room) has agreed to judge the contest (along with Brooke, of course, and the friend who's initiated the garden project and another who’s said he’ll help with the gardening), and we’ll put together the stats—garden dimensions, elevations, locations of the various existing steps, decks, trees—and lob them out to you shortly on the blog. It's a bit of a challenge to make this garden accessible and still have it be a garden--

Of course, this is a contest without a prize—except the pleasure of seeing one’s design or part of it come into being. And there will be reverse prizes for all contestants—not only might you see some features of your design incorporated in the final plan, but you get to bring something instead of taking winnings home: we’d love to have you come and bring a plant or two to plant together with Brooke: he’ll be the gardener, you be the hands that put the plant in the ground. So it won’t be just Brooke’s garden, but everybody’s, and of course it will be wonderful to have you all sit in it eventually and enjoy it with him.

After pain, a valentine

Sorry for the delay after the recent blog about pain: these days haven’t been easy. After a couple of days, pain returned in force, and that made some difficult choices about the tradeoffs between control of pain and maintaining normal cognitive function. He's said that it feels as if his whole body is on fire. For some days, he was doped up enough so that he couldn’t do much of anything at all; for some, he’d try to do the various forms of therapy, but as one of the therapists put it, even trying to get him to do hand exercises like moving his thumb, “you have to be in the same time zone.” (There are a lot of claims made in the end-of-life literature about how it is possible to control virtually all pain—they usually mean cancer pain—but up close, it doesn’t look so great.) In Brooke’s case, it’s been possible to back away from these forms of pain control at least for the moment, and as of this evening he’s comfortable and happy, and is able to say yes, he’ll be my valentine.

There’s lots of family here at the moment and more coming. Among them,
Sara is here (along with Max, who just turned 7) and says she is willing to bring back anyone’s bowls/Tupperware/baskets, etc….but we have no idea what belongs to whom. If you are attached to something, please let us know and she can make deliveries. Otherwise it may never get back to you!—or at least not until after Brooke is eventually home (though that may be some time away) and we can have a big open house.

Meanwhile (now Sara is writing this), Brooke is adjusting to the fact that there’s a lot more rehab work to do before he can think about coming home, and that may involve transfer to a long-term skilled nursing facility known as South Davis, the place of choice considering the insurance alternatives. If this happens, it will probably be more important than ever that his support follow him to South Davis—it seems far away but it’s actually only 20 minutes, just off the 5th South exit in Bountiful. He understands that the investment in time, vent-weaning, and other therapies will stand him well in terms of coming home, but he also fears the isolation that going to a different and strange facility presents.

We don’t know yet whether this will have to happen, or whether he’ll stay longer at the U, or what, but like everything else, if it does, we’ll try to make the absolute best of it. In any case there’s been progress on the vent-weaning front. The other day he spent (by his own count) 15 hours and 45 minutes just on pressure support—that means, initiating his own breaths but having the vent just goose up the amount of air coming in a bit. Then he spent a couple of short periods without any vent help at all. He was thrilled! But then the pain episodes intervened and made further trials impossible, though now that the pain isn’t occurring at the moment we’re back to optimism mode. And, today, being each other’s valentine.


Sunday, February 8, 2009

The Arrival of Pain

More mysteries of the mind and body. Here’s what a good friend who’s been around a lot said in an e-mail just this morning, commenting on challenges of his own:
“My stuff is so minor in comparison to what Brooke (and you) are faced with, I question ever letting it come up. I guess friends care for each other's problems no matter their size. This week I have felt very knocked about by the reality of a spine injury and the long hard road to whatever recovery is reached. My God that man's an athlete. And to realize that it's his mind that drags his body to the summit of peak after peak, muscle twitch by muscle twitch leaves me stunned in admiration. The arduousness of the path has been heavily impressed upon me this week. This ain't easy.”

That was before what happened today. Only hours later, Brooke had his first episode of pain, as distinct from discomfort--severe, whole-body pain. The nurse asked him to rank it on a scale of 1-10; he ranked it a 12. But what’s remarkable is that, except for pain in his neck, this is the first episode of bodily pain since the accident. He’s had endless amounts of what you’d trivialize by calling it discomfort (“noxious stimuli” said one clinician), but says he has never experienced actual pain—and then wham!

He said he tried to think about worse pain—Confederate soldiers lying on the field of battle. And then he tried to deal with it by making himself smile, and after he could speak tell jokes about the pain. And by this evening, he’s “resting comfortably” as they say in hospital-speak, talking with the friend who wrote the lines above, about Ornette Coleman, Count Basie, Joe Turner, and a Hammond B-3 organ. And smiling.

Question is, what is this pain? Could it conceivably be yet another set of circuits reconnecting? The effort is to try to think of it as, uh, progress, sort of along the lines of “no pain, no gain.” At least for this amount of pain you can get TWO Lortab. Imagine.

Saturday, February 7, 2009

Gracious Living, in pictures

Gracious Living

Imagine a friend who’s having a birthday and wants to spend it in the hospital with you, instead of subjecting himself to some standard-issue restaurant where birthdays are a routine formality. So this friend and his wife proposed to have a little birthday dinner party here in Brooke’s room in rehab: we asked permission from the staff days in advance, and they were most obliging. They brought in a table and chairs, and looked the other way while we opened the wine. The friends cooked a remarkable lamb curry with aromatic rice, and together with another couple who’ve also spent many hours tending to Brooke, we had this remarkable little dinner party a night ago—with almost every detail perfect, right down to the tablecloth. (No lighted candles, though, in a room with oxygen.) Wonderful.

Of course, not everything about this picture suggests gracious living. Brooke has been afflicted by huge, gripping spasms, both modest ones that make his legs jump and serious ones that he says feel like a vise around his chest. Of course, these are common in (incomplete) spinal cord injuries, but apparently much worse for some folks than others. Some of the big ones Brooke has go on for hours. There’s apparently some debate about what causes these, and also what should be done about them: we gather that the old school says try to suppress them, while the new look is to make use of them and consider them possibly part of nerve regeneration or reinvigoration—though they aren’t at all well understood. Brooke’s getting a good dose of spasm in any case. He speaks of it as a “crash course in the relationship between the mind and the body, a crash course in a day, like graduate school in mind-body relationships compressed into a single day.” And the relationship seems to get more complex every day, as little single muscles in the body give some trace evidence of action and Brooke’s no longer a completely independent-seeming head. Yet the mind clearly plays a role in the process: there are some things he’s been at first able to do, like wiggle his right toes, only if he was looking at his foot but not otherwise.

There are other wonderful things too—not counting family, we had the first out-of-town visitors the other day: friends who swooped in just for the day to say hello, then got right back on the plane. It make one think about what it must be like to have followed Brooke’s (mis)fortunes for so long without actually seeing him, as people who live here in town can, but to have imagined what it must be like and then actually see him in real life, both motionlessness and animation at the same time. But it’s really Brooke, and it was wonderful to have them enjoy being with him.  

Tuesday, February 3, 2009

News Flash--40 minutes

Hot, hot news: Brooke spent 40 minutes off the vent late yesterday, breathing on his own. This is a fantastic breakthrough, one we weren't at all sure would be possible for someone with a C2/C3 injury, and while we try to guard against too much thinking into the future or anticipation of future gains when we realize that there aren’t any guarantees (either about ventilator independence, physical function, or anything else), this is nevertheless really significant.
Of course, he also spent 40 minutes with each hand bound tightly with elastic tape into a fist, and each arm placed in a long stretch out on the bed above his head (the “at the beach posture”) to try to regain some range of motion in the fingers (at the moment, they don’t bend) and stretching of his upper arm muscles, and then another 40 minutes getting electrical stimulation to each forearm, but it’s the first step in the vent-weaning process that we’re celebrating. And how.