In researching ABR I watched hours of video, piecing together the theory and application as best I could. It was a great relief when Leonid, while visiting Hawaii, framed it in a way that made it immediately relevant and clear. He introduced us to the concept of “Lavish” versus “Thrifty” rehabilitation.
The most expensive things in the body are the muscles and the nervous system. They require a lot of effort to use, and the body expends a lot of metabolic energy to meet their demands. Most traditional rehabilitation focuses on one or the other, or both simultaneously as therapists, parents and aides attempt to stretch and “retrain” muscles, and give sensory and cognitive input in hopes of eliciting output.
A healthy person has adequate reserves to meet the needs of the muscles and nervous system. Some injured people also maintain enough of a metabolic “bank account” to write the energy checks these systems demand. But, in the case of the most injured people, a systemic collapse has drained their reserves, and they are unable to meet the demands of these expensive systems.
So, asking a very injured person to use the most expensive means is analogous to asking a girl without money to buy rice, to purchase steak in order to recover. Not only is it not feasible, but the attempts to use the expensive systems leave an injured person in deeper debt, in worse shape in many ways.
The connective tissue of the body, on the other hand, is extremely cheap, or “thrifty”. It makes almost no metabolic demands on the body, nor any cognitive demands. It is ubiquitous – found everywhere in the body. It covers, and actually invests itself, into bones, muscles, and organs. It is the major support structure within the body. It is also completely passive, very unlike the contractile properties of muscles. So, it requires a mental shift to begin considering how to strengthen connective tissue.
To begin this shift, we can observe what happens when it collapses. A healthy person has two major “balloons” supporting her core, one in the chest and one in the abdomen. Those balloons are contained by (or even created by) connective tissue. When a person is subjected to a significant neurological trauma (either in utero or after birth at some point), the connective tissue begins to collapse.
[Side note: the thoughts within these brackets are mine, not Leonid’s. Not sure if he would agree or not. Many have asked me “Why does it collapse? The first factor, I believe, is hormonal. Cortisol is a stress hormone, which destroys connective tissue after prolonged, elevated exposure. After brain injury, typically a person’s cortisol levels go through the roof. Abbie’s were still extremely elevated two years after her injury. There a not any really good ways to bring cortisol levels down, although DHEA supplementation can help. I have chosen not to give DHEA to Abbie at this point, because she is still pre-adolescent, but she does get pregnenolone.
The second factor is a vicious cycle. Tissues remain strong and vital by being stressed mechanically — by moving and bearing weight. As a brain-injured person becomes locked up by spasticity, healthy biomechanical stresses become difficult to provide. Tissues weaken, fluids stagnate, and the entire system begins a gradual but steady decline. When the tissues weaken, the balloons of support act just like balloons that have been pricked, slowly losing the pneumatic pressure needed to support the core of a person.]
Once the balloons of support collapse, all the joints begin to move into the wrong places. Stepping back for a moment and realizing this makes the arrogance of our “movement retraining” approach apparent. Once a body is contorted, the person lives in what Leonid calls the “proprioceptive jungle” (proprioception is how the body perceives it’s position in space and movement). Because joints are not in the proper places, nor functioning normally, the input given is altered.
We, on the other hand, blessed with healthy bodies and normal proprioceptive capabilities are “urban dwellers”. We then approach the jungle dwellers and attempt to teach them how to hunt in the jungle. Just because we know from our experience how a shoulder “should” work, we think that helping a jungle dweller is as simple as forcing his shoulder to work the same way, through stretching, assisted movement, and medications. Helping a starving native tribe by telling them to google “gardening tips” makes about as much sense.
In the weeks and months after a brain injury, much investment is made in the lavish methods of rehabilitation. For those fortunate enough to have the resources to utilize these investments, recover comes in differing stages and depths. However, for those not so fortunate, the lavish efforts produce nothing worthy of comment nor celebration while in the meantime, the connective tissue collapse pushes them further from health. This points to the need to differentiate between degrees of injury — “brain injury” is far too broad of a stroke to adequately address the varying needs.
The graph below was produced by a group in Hamilton, Ontario Canada who followed children with Cerebral Palsy for 21 years to see what levels of motor function they were able to achieve. Although this is geared for CP, I think it is instructive when we talk about motor recovery in brain injury in general.
Prognosis for gross motor function in cerebral palsy: Creation of motor development curves. Journal of the American Medical Association, 288 (11), 1357-1363 Rosenbaum, P., Walter, S., Hanna, S., Palisano, R., Russell, D., Raina, P., Wood, E., Bartlett, D., & Galuppi, B. (2002).
As you can see, “Level 1″ is the least affected, while “Level 5″ is the most affected. Lavish methods may be effective for Levels 1 and 2, but for Levels 3, 4, and 5 they are increasingly less effective. It is often tempting, after seeing progress in a Level 1 or 2 person, to replicate the approach in a Level 3, 4 or 5 person, while thinking, “Well, we may not achieve as much, but at least we may gain something.”
Unfortunately, since the lavish approach bankrupts the Level 3, 4 and 5 people, not only do they not achieve gains, but they make things worse.
The collapse of the connective tissue has great impact on the respiratory system, the digestive system, as well as posture. I can tell you that every parent of a spastic quad child is dealing with challenges in all these areas. Normally we are given medications (nebulizers, inhalers, anti-secretion, anti-reflux, digestive motility aides, anti-spasticity) and all manner of splints, braces and supports. What we are not given, unfortunately, are solutions. Our children continue their declines at rates that seem to accelerate over time.
I sit here typing on the first Monday in May….the day Abbie drowned seven years ago. Through these challenging years I have often comforted myself by saying, “My daughter is not an oncology patient. I am not beating back something trying to kill her.” But, in the last six months, I have realized that comfort is an illusion. She is dying, more rapidly each day, as her respiratory system begins to cave under increasing strain.
Leonid’s in-depth evaluation, which I will describe in a separate post, was exquisitely painful for me, as he confirmed my fears, and shone a bright light on things I’d only seen as shadows. I try not to regret only learning about all of this now, avoiding thinking about the beautiful, strong body that has disintegrated over these years. It will be a long road out of this valley in which we find ourselves, but we are walking anyway….only, now I have confidence that perhaps we can change the direction.
More to come on typical results of connective tissue collapse, how to strengthen it, and the physical barriers we have to work around.