Like any truism, there is a grain of truth in this statement. The question that really matters is whether or not the kind of truth contained in this statement is useful to anyone!

BRAIN BOOK^® System believes that this statement is over-used, under-explained and clouds the issue.

Those of us who have brain injury, and those of us who work with people with brain injury, know that in many ways, every brain injury is very much the same! That’s why support groups work. That’s why e-mail discussion groups on the Internet are filled with common stories. Those of us who have day-to-day experience with brain injury know that in many, many ways, every brain injury is very much the same!

We share common issues, common strengths and common problems. We also share common solutions. Whether the injury is mild, moderate or severe, there are often common ways to outsmart (end-run) the core problems associated with brain injury -- short-term memory impairment, difficulties with orientation and organization, difficulties with initiation, planning and follow-through, to mention only a few.

When we challenge the myth that “every brain injury is different” we can start to look for common solutions - solutions that have worked for others - solutions that may work for you (or your loved one, or your client).

  Myth #2
“Cognitive rehabilitation should focus on mental exercises (because it’s like exercising a weak muscle)”

Focus on mental exercises? We don’t think so!

Any more than it would be considered appropriate or useful to suggest someone who has lost most of their hearing to do “hearing exercises. Better that they amplify sound to enhance whatever hearing remains, learn to read lips perhaps, and acquire a TTY machine.

That’s not to say that this “exercise” approach is not common. In our view, it is all TOO common! The pervasiveness of the “mental exercise” approach does not make it right. Nor does it make it effective.

The informal research and networking BRAIN BOOK^® System has done indicates that the vast majority of successful “survivors” have focused on developing and using compensations! They consider the “mental exercise” approach to be incidental to their functional recovery, if helpful at all. The exercises themselves fill time during rehab, but have few lasting benefits.

BRAIN BOOK^® System likens the “mental exercise approach” to exercising a sprained ankle. Not only does it not help one heal, it may actually do it’s own kind of damage. Mostly in frustration and loss of hope that functional recovery is possible!

The difference is that sprained ankles can physically heal. While none of us knows precisely how brains “heal,” we do know this much - they do not heal in the same way sprained ankles heal! Or weak backs, or many of the other physical analogs currently used as the model for cognitive rehabilitation.

  Myth #3
“If someone has a severe injury, they cannot learn a complex compensatory system - it needs to be kept simple”

For many, many people, this is simply NOT TRUE! BRAIN BOOK^® System has found that the key to teaching compensation is providing people with an effective system - not a simple system. The other key is knowing how persons with brain injury learn.

While it may not seem logical that a person with severe cognitive impairment might not be able to learn to independently write “Memory Notes,” plan, schedule and manage their time, solve their own problems and stay oriented in new situations, the fact is that logic needs to be put aside. Rather, we need to look at the facts.

BRAIN BOOK^® System can demonstrate that many persons with severe brain injuries (who test out beneath the 1st percentile in some cases) are fully capable of learning complex compensatory strategies! We will be happy to introduce them to you and their families.

  Myth #4
“If someone has a milder injury (either “mild” or “moderate”), all they need is a day planner and some general guidelines to “write stuff down” and “get organized.”

Oh, the pain, guilt and frustration this myth has caused so many!

Again, while it may seem logical that someone with a milder injury “should” be able to get their lives back by learning to write things down and get organized, BRAIN BOOK^® System has encountered countless situations where “invisibles” (as we call them) simply cannot do this. They are not malingerers. They do not have relevant “preexisting conditions.” They are not failing to try hard enough. They are, quite simply, brain injured! They do not have the ability to create, on their own, the compensatory systems they need to fill the gaps brain injury causes!

Many professionals who have seen the BRAIN BOOK^® System agree it has a place in the cognitive rehabilitation “mix,” but they make the mistake of assuming that (1) “such a complex system” cannot be mastered by someone who has had severe injury, or (2) “such a complex system is overkill” for people with milder injury. There is much debate about what this leaves in between.

Once again, BRAIN BOOK^® System can demonstrate that many persons with milder injuries (diagnosed as “mild” or “moderate”) have found that the BRAIN BOOK^® System meets their needs. We will be happy to introduce them to you, as well!

  Myth #5
"Everyone is different. People need to shop around and find the memory system that works for them”

Again, logic would tell us that this is true. The problem is that this kind of advice is useless for many.

If you have every gone to an office supply store with someone who has a brain injury and watched their eyes glaze over as they try to decide what to buy, you will start to understand. That is, if they don’t flee the store in what appears to be terror. If they do make a selection, they will often end up with something they don’t ever really use!

Some people are list-makers and are encouraged to do the same post-injury. Lists often do not work well following cognitive impairment (there are reasons for this, which we will not go into here). Many people use Post-it type note. They seldom work very well either (and again, there are reasons). Since we know these tactics seldom work, it seems cruel, at best, to suggest to a person with cognitive impairment that they try these things!

In our collective ignorance, we may end up encouraging people with brain injury to “shop around” and continue to try to build a system for themselves that works for them. The problem is, neither they nor most civilians (therapists included) understand enough about what is needed to be able to build an effective system.

Why? Because it's like asking someone who has lost the use of their legs, and who is not given a proper wheelchair in the first place, to crawl to the hardware store to purchase all the parts he thinks he might need for the wheelchair he has been asked to build for himself (never having built such a device, prior to his injury, of course).

Persons with brain injury need wheelchairs too! A specialized one that meets their special needs. Not a tool that was designed for people who do not have their kind of impairment! Any more than a dining room chair with wheels would be effective for someone who has lost the use of their legs!

  Myth #6
“People with brain injury and their families need professional help, not the kind of “anecdotal” help they would get from other families or peers.”

Knowledgeable, enlightened professionals are very helpful! Degreed professionals who have little hands-on experience with long-term recovery from brain injury are generally not helpful at all.

Sadly, many professionals (including doctors, therapists, counselors, vocational consultants and others who work with people who have had brain injury), often rely too heavily on articles published in their trades (trade journals), rather than on first-hand experience with those of us who have had a brain injury and have battled back. Much of the information they rely on is based on the myths presented here or other misinformation. Like the story that is whispered around a crowded room, information gets passed along that one thinks is accurate, when it may not be.

Many well-intentioned professionals pass along outdated or inaccurate information, thinking the professionals whom they are relying on are giving them good information, when this may or may not be the case. What is the antidote for this? Networking with other families. Or networking with one’s peers. Finding professionals who have a track record of success! Finding professionals who are willing to learn from those of us who have experienced successful recoveries. Finding professionals who rely on what they learn from us as much as they rely on their journals and their peers!

  Value of the Internet

The Internet is becoming a powerful resource for those of us with disabilities, our families and our helpers. Internet e-mail discussion lists provide a forum where those of us with a particular disability have started to do our own research, and we are starting to write our own articles! Some professionals have joined our little discussion groups and report they learn much. As time goes on, we suspect this will be more commonplace.

Until this enlightened moment arrives, BRAIN BOOK^® System is of the position that a mix of professional advice with peer support and networking will likely provide the best information for persons with brain injuries and their families. As anyone who has been part of an Internet support or discussion list knows, people who have “walked the walk” often have valuable insight on how to navigate the course.

Disclaimer:  The information provided herein is opinion only and is not provided by anyone with medical training. The writer is a person with brain injury who teaches compensatory skills. Whatever “advice” is contained herein should not be taken as medical advice in any way. Readers are expected to exercise independent judgement and consult their treating physician(s) on any medical or rehabilitation questions they may have.