Wednesday, February 26, 2014

Rehab, recovery, compensation

When a brain is damaged on one side, as is often the case with stroke, there are two routes to rehabilitation: compensation and recovery. I'm trying to compensate as little as possible, and recover where I can.

In either case, the goal is essentially the same: for the person with the damage to regain some lost function. For example, I have a tremor on my right side, my right side is also weaker and less coordinated, and I am right side dominant: this makes writing difficult and slow. (Typing, too, since I've been touch-typing for over 20 years ) So one goal of rehabilitation is to be able to write swiftly and legibly again.

I could compensate by learning to write with my left hand. That would not help with typing, but in time I could probably make my left hand as adroit as my right was, despite its ingrained gaucheness. I don't want to do that at all, and not just because it is likely to be a huge pain, and learning to write the first time was boring enough.

The path of recovery that I've taken instead means getting my remaining brain to assume the functions that the damaged (dead) bits used to (a lot easier for neuromuscular issues than cognitive ones). Given how tedious it was to learn to write in the first place, and that I already know how*, recovering my hand and arm function by writing repeatedly would be dull and not very productive. Writing is a relatively fine motor skill. Not as fine as sculpture, say, but finer than I am capable of performing without trembling.

To eliminate the tremor, I need to train my brain to use new pathways that activate the muscles smoothly, rather than rely on existing neural pathways that try to use absent brain matter, and by overcompensating set up the tremor. That means doing things slowly, even for my right side, which is already visibly slower than the left. All of which comes down to doing exercises in the gym that work the muscles that correspond to missing brain tissue, and working slowly, with attention to the form more than the weight and to not trembling.

Happily, it is possible (though likely harder) to recover after many years of compensation. So it is hardly the end of the world when I decide to 'just do' something. It is, however, very easy to slip into a habit of compensation when recovery would be preferable. A change of scene, going out of any familiar environment, serves well to remind me when I am 'just doing' more than I thought.

One of the shortfalls in many approaches to rehabilitation is the desire to get patients to the next place as fast as possible, ultimately to get them home a.s.a.p., where we become someone else's problem. In my case, although I met (just) the physical requirements of being able to wash myself and to get upstairs, my balance was so poor that I could not be discharged from hospital, since I remained a falling risk. In the UK, the physical requirements include the ability to make a cup of tea, and then to carry it. In both cases, while physical and occupational therapists might want a patient to recover, compensation is so much faster and often easier, that is the only option in the time or budget available.

This approach sets up a number of inaccurate and unhelpful expectations in the person who has brain damage. I believe in an honest approach, no matter how uncomfortable. Too often, the reality of recovery is concealed: it is possible, but it takes work, and it is often imperceptibly slow. 

But recovery is possible.

* Not guaranteed after a stroke: I met someone who had spent much of her life teaching kids to read and write, then teaching others how to teach kids, who lost the knowledge of how to write. I can't imagine how appalling that must have been.

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