Ask Kathy M. Archives
A Collection of Questions and Answers from TBI Advice Expert - Kathy Moeller

Topic: Miscellaneous - "Recovery" from Brain Injury - Defined

Question:

Dear Kathy M.,

In your last column, you wrote that your injury was "moderate." I've heard terms like "moderate" applied to me, but I don't think I know what it means. The last doctor I saw said my injury was more on the "mild" side and that with cognitive therapy, I should fully recover.

It's been a year and I have made a lot of progress but my memory is still affected, my abilty to concentrate is not very good, my emotions are all out of whack and I still get very tired. Does the doctor's prediction that I should "fully recover" mean these things will go away eventually?

You sound like someone who has recovered, even though you seem to need strategies that are not yet "down pat," as you say. But it also sounds like you still struggle with symptoms and even get surprised by them? Don't these things get better after nine years? Can you explain what "recovery" after brain injury means to you and how I will know when it has happened.

Kim in Michigan


Kathy's Response:

Dear Kim,

You have asked some VERY important questions, Kim! Questions that get right at the heart of what it means to "recover" from a brain injury.

Doctors, therapists and persons with brain injury use the term "recovery" in different ways. In fact, many of us talk about different "recovery models" (the medical model, the therapeutic model, the counseling model, the educational model, the compensation model, etc.). The model we use frame what we mean by "recovery."

I think of recovery from brain injury in much the same way a person who has lost the use of his or her legs uses the term "recovery" to mean that they have learned to use all the tools and skills available to them to maximize their potential and return to functional living to the best of their ability. Or the way a person who has lost much of their hearing might learn to compensate for hearing loss with the use of hearing amplification divides, TTY machines and skills related to reading lips and body language.

In both cases, the person has maximized their potential and has "returned to function" (which means, they are able to function well again). They just "get there" differently. Going for a walk in the park may require the use of a wheelchair, or working in an office may require special phone equipment. These are examples of recovery based on the "compensation model."

Recovery Models
Because recovery means different things depending on the model one is using, it's important to know how different recovery models affect how we think about recovery. As I see it, when the term "recovery" is used, the most common model is generally taken from the medical arena. Our notion of "therapy" is often taken from the medical arena too. This is understandable, since many forms of therapy have their roots in medical practices. Unfortunately, the medical model may not be the most useful to those of us with brain injury, as we struggle to be successful in practical day-to-day life! In my experience, the way people normally use both the term "recovery" and the term "therapy" can interfere with the steps we would benefit from taking to maximize our potential.

Some background. . .
"Medical Model" If a person has heart disease or back pain that is caused by excess weight or the wrong diet, their loss of excess weight and improved diet can result in what we call "recovery" (no heart disease, no back pain, etc.). Similarly, if you break your leg and medical procedures are used to repair it (setting the bone, casting, inserting rods or pins, whatever), after the medical procedure is completed, we say the person is "in recovery." After you are all healed up, we say the person has recovered" (bypass heart surgery, removal of a damaged disk, surgury to repair a broken femur, etc.).

As I understand it, this "model" for recovery has become known as "the medical model" because something has been fixed or repaired, based on medical knowledge or practices.

Therapy models It appears to me that the most common recovery models for people with brain injury are either based on the physical therapy model (which is in the vein of the medical model), the counseling model and the compensation model. I feel the most "recovery" I achieved, in terms of being able to return to more normal life function, was from the latter, the compensation model.

Physical Therapy (PT)
Many forms of therapy, including some forms of "cognitive therapy" are aligned with the medical model. Some of the speech therapists I have worked with tell me that the kind of cognitive therapy often prescribed for persons with brain injury is based on the medical community's experience with physical therapy (PT), which is generally considered part of the medical model.

Anyone who has had PT knows that the basis for it is that something in the body needs to be fixed, and the resulting therapy (often in the form of specialized exercises) results in the body returning to full, normal function, or at least more normal function. One's range of motion increases, one can bend over more comfortably, or walk better (or in some cases, walk at all).

PT is particularly effective with some kinds of back injuries, certain kinds of physical problems some people experience from their brain injuries, and a host of other things. My experience with physical therapy is limited to manipulation that had to be done to my ankle after my car accident. I broke my ankle in the accident and after I got off the crutches (I broke the femur in the same leg too), I still had a pretty bad limp. Physical therapy was prescribed and it worked. My ankle is now "repaired" because I can walk pretty well and don't have pain. One could say my ankle has been repaired and I have recovered from having a broken ankle, first as a result of the medical treatment I received and secondly, as a result of undergoing physical therapy. Other terms that are used are "rehabilitation" or "rehab." It could be said that I went through both medical treatment and physical rehabilitation for my ankle and it resulted in "recovery."

Cognitive Therapy and Cognitive Rehabilitation (CR)
When I was in a brain injury rehabilitation facility, I underwent different kinds of "cognitive rehabilitation." In hindsight, I see my cognitive rehab falling into three categories:

  1. exercises designed to improve memory, concentration, attention and other cognitive functions,
  2. adjustment counseling to learn to deal with the "new me," and
  3. compensatory skills training

Cognitive Exercises
The attention training tapes the therapists used, the memory improvement exercises I did and the computer software I purchased to "retrain" my brain would all fit in the category of "cognitive therapy" that was designed to fix what was wrong with my brain. In this sense, it would be cognitive therapy that used the "therapy model" we have from physical therapy.

Counseling
The adjustment counseling I received was called "cognitive therapy" too, but most of it was not based on exercises, per se. Rather, it was counseling for the purpose of helping me to adjust to the new me (this is sometimes called "adjusting to deficits," which is not phrasing I feel is very helpful). I learned to adjust to the fact that I needed more rest, may need to scale back my life, do different work, etc.

Compensation Training
The compensatory skills training I received focused on learning new ways of living, based on the fact that certain brain functions were no longer automatic (or even present, in some respects). I learned how to write and use Memory Notes, use and create visual cues for myself, stay oriented, stay organized, stay on track, etc. I see it as replicating cognitive function on paper so I can function in the world without relying on cognitive (brain) functions I had lost.

I see the first kind of therapy (attention training, memory enhancement exercises, etc.) to be like physical therapy. It was designed to fix one or more things that weren't working "normally." I consider the second kind of therapy to be counseling (to help me adjust to one or more changes that had occurred in my brain). And the third type of therapy -- learning compensatory skills -- is like going back to school to learn new skills.

Mild, moderate and severe injury
Kim, you asked about "moderate" and "mild" injury. These terms are used to define the severity of injury. Sometimes whether or not someone was in a coma, or the length of time one is in a coma, is used to distinguish the severity of an injury. Sometimes the results of one or more neuropsychological assessments is used. In either case, the goal is to try to understand how much and what kind of brain function has been lost -- "a little bit," "a significant amount" or "quite a bit."

If we are using the medical model to talk about recovery, many doctors, therapists and counselors believe that if a person has had a "mild" brain injury, their chances for a "full recovery" are good -- meaning that their memory ability will return, their fatigue will dissipate, they will regain the ability to be oriented, organized, initiate activities, follow through, etc. Some professionals will say these functions can return because of natural healing and others will say that "therapy" is necessary. It's important to find out what your doctor meant.

Full Recovery
It's also important to find out what your doctor meant by "full recovery." Did he or she mean full healing (meaning the brain tissues are restored to the point where your brain serves you the same way it did before), partial healing (to the point where you should be able to function normally in the world, with a few minor adjustments), or did he or she mean return to full function, after you learn to compensate?

More importantly, what do YOU think "full recovery" means. Do you network with your peers who have "recovered" (and/or gotten their lives back on track), to find out what recovery means to them and how they did it?

How we define "recovery" matters! The model we choose affects the steps we take to put our lives back together. In my case, organic memory function has not returned. I compensate well with prosthetic memory devices and skills related to information capture, storage, retrieval and use (mostly on paper -- I call it "replication cognitive function on paper"). My ability to pay attention and stay focused is still impaired. Again, I compensate well with specialized tools and skills. I also use strategies to deal with emotional overload, fatigue and other problems.

Hope this helps.

Kathy M.

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