“Where can I find the best rehabilitation program in the country?” is a very common question, one that families of those recovering from injury often ask — and it is easy to understand why. If there was a place, anywhere in the world, that would help our loved one get “back to normal”, who would not want to give it a try?
The problem with seeking the “best” facility or physician is, “best” has no real definition. What we must understand is that every injured person will have different needs, and our search should, instead, be focused on finding the right professionals for their needs. Every patient is different, and while someone might benefit from more physical rehabilitation, another patient might need more help relearning social cues and appropriate behaviors.
So, what can you do to help your loved one find the right team for their rehabilitation?
The Brain Injury Association Of America offers information for families and friends of brain injury victims. In their guide to selecting and evaluating rehabilitation services (.pdf), they include some helpful tips:
- The patient and their family know best. You know the needs of your loved one, and you can decide what aspects of their care are important.
- Be involved. Stay in constant communication with the staff at the facility, and be a part of the decision-making process.
- Make sure everything you agree upon with the staff is put in writing, and keep all records up to date.
- Shop around! The first — or even fanciest — facility that you find might not always be the right one. Listen to the patient’s opinion, too.
Deciding who to entrust with your loved one’s rehabilitation is a very important decision. With the right professionals, the injured person will feel at ease and taken care of — and, when their needs are met, the success of rehabilitation increases, improving the patient’s life after injury.
Having a loved one who is suffering from brain injury can be devastating — many families of patients will cling to myths of miracle cures for brain injury that do not exist, and many will spend countless amounts of time and money searching for the “right” treatment of professional, hoping that “everything will go back to normal.”
However, in The Nature Of Head Injury — an article published in Traumatic Brain Injury and Vocational Rehabilitation — Thomas Kay, Ph.D. and Muriel Lezak, Ph.D, advise of the dangers of trusting miracle “cures.”
The Wizard has a computer (usually an Apple but now maybe an IBM clone) and an armful of software. They load a diskette, wave a magic mouse, and “presto,” cognitive changes begin to occur. “Your client is unable to work because of memory deficits? No problem. Send him (or her) to the Wizard for a 10-week course of memory retraining, remediate that deficit, and back to work he’ll (or she’ll) go.”
What we must understand about the injured brain, is that it not a muscle that can be “retrained”.
When understood in this context, cognitive remediation (in the narrow sense of specific, often repetitive tasks) or neuropsychological rehabilitation (in the broader sense of modifying maladaptive behavior and cognition using cognitive and psychological principles) can be an essential part of the rehabilitation process after head injury.
The key here is, then, to gear treatment towards helping the injured develop new skills and ways to cope with the limitations their injury has placed on them.
The Nature Of Head Injury is an article published in Traumatic Brain Injury and Vocational Rehabilitation, where Thomas Kay, Ph.D. and Muriel Lezak, Ph.D, attempt to debunk the most common myths surrounding brain injury.
In their article, Kay and Lezak discuss the validity of IQ testing as a measure of a patient’s progress — and why professionals and families alike should be careful about how much they read into these tests.
Often, upon request, naive psychologists will examine a head injured person on a traditional battery of intelligence tests, find that the IQ (the numerical average of the many subtest scores) is in the average range, and then pronounce the client “cognitively recovered”, or “capable of functioning intellectually in the average range.”
The danger here lies in that, upon receiving “normal” test results, professionals and families might set unrealistic expectations for just how much and how quickly things will improve — being told that the patient has a “normal” IQ can set the unrealistic expectation for a “full” recovery.
Also, it is important to note, IQ testing does not measure a person’s emotional state, ability to read social cues, and many other areas in which a brain injured person might now be facing challenges.
Head injured persons who can perform quite well on such tests may have such breakdowns in learning, memory, and especially executive functions (planning, organizing, self-monitoring) in the unstructured real world that they are totally unable to function. “Average range IQ” and even higher IQ scores should never be the basis for concluding that a client is cognitively intact, and therefore ready to handle mental stresses of the real world.
Believing that “normal” IQ test results mean the victim will “go back to normal” can set unrealistic expectations — especially when dealing with patients who were, previous to their accident, exceptionally bright.
Just as normal range IQ’s should not be mistaken for cognitive normalcy, a normal neurological evaluation -especially late after injury should not be mistaken as meaning that there is no brain dysfunction. As noted above, acute bleeding and contusion of brain tissue may clear up and disappear from brain scans over a period of months and years -even though nerve networks and biochemical balances may still be severely effected.
Similarly, “normal” brain scans and tests might not be an indicator that full recovery has taken place. Even when all of the physical damage to the brain has healed, the patient might still have cognitive and social hurdles to face.
It is important, when trying to help a loved one after an injury, that we tune in to their needs. The fallacy that normal tests results mean no more help is needed can cause unnecessary harm.
In The Nature Of Head Injury, an article published in the book Traumatic Brain Injury and Vocational Rehabilitation, by The Research and Training Center at the University of Wisconsin-Stout, Thomas Kay, Ph.D. and Muriel Lezak, Ph.D, shine some light on some common misconceptions about brain injury.
The third myth debunked by Kay and Lezak is the concept of a “plateau”.
[…] this concept says that “recovery” starts after emergence from coma, continues at a gradual upward pace, then slows down, and levels off, so that no more improvement occurs. The visual analogy is a geographic one –a plateau.
The belief is that, after a while, the injured’s progress in their rehabilitation will slowly decline — that all of the recovery happens in an initial outburst — and that there is not much to be done for the victim after this “burst” has worn off.
This, Kay and Lezak argue, is an underestimation of the injured’s ability to recover.
[Injury victims] may take one step forward, two back, do nothing for awhile, then unexpectedly make a series of gains. When one is preoccupied with watching for plateaus, it becomes easy to disengage from the client whose progress is sputtering.
This belief in a “plateau” can lead to lots of frustration. Professionals and families alike might grow disillusioned and disenchanted when that first lull is reached, thinking that this spells the end of the victim’s recovery. It can cause the injured to feel abandoned, and cause them to lose hope that they can reconstruct their lives. This is the complete opposite of the mindset needed to overcome injury.
This myth also ignores the impact certain experiences and life changes can have in someone’s recovery from an injury.
Second, long “plateaus” can be interrupted years later by energizing environmental events. The appearance of a new, committed counselor, or the influx of social contacts that come from being “forced” to a support group, can uncover functional potential in head injured persons that has lain dormant for years.
In helping a loved one overcome an injury, we must keep a positive attitude. The belief in a “plateau” creates an unneeded obstacle. Recovering from an injury is a day-by-day, step-by-step process, with many ups-and-downs.
In The Nature Of Head Injury, an article published in the book Traumatic Brain Injury and Vocational Rehabilitation, by The Research and Training Center at the University of Wisconsin-Stout, Thomas Kay, Ph.D. and Muriel Lezak, Ph.D,, aim to debunk common myths about head and brain injury.
The second myth debunked in the article is the “One Year” myth. There is, among patients and professionals alike, a mistaken notion that any and all recovery from brain injury will take place in the year following the accident.
It was a traditional rule of thumb for physicians to tell patients and families that “whatever recovery will occur will happen in the first 12 months.” This was probably based on the observation that the neurological examination at one year was quite predictive of neurological status years later.
It is true, that in a certain context, most “healing” can take place in the first year of rehabilitation. But this only refers to most of the damages to brain structure itself — connecting tissues, scarring, neurological paths. For the most part, these types of damages will heal in the famous “One Year” time frame.
The mistaken notion, however, lies in believing that this leads to full recovery. The brain might slowly heal itself, but some of the damage to cognitive function, as well as personality, might just as well be permanent.
Another aspect that is also overlooked is that slow — and even big — progress can be made, even years after the injury. This “One Year” myth ignores that a change of scenery, a new relationship or job — or any other sort of positive change — can spark progress.
The danger with the “recovery occurs within one year” myth is that it lulls families and professionals into thinking that the client’s level of performance at one year is what everyone is stuck with. While the major brain healing may well have occurred within this time frame, true rehabilitation may just be beginning.
The biggest fallacy with the “One Year” myth is that, after “time is up”, professionals might feel less inclined to remain helping the victim. Less attention might be given to the patient, and those around them might feel like there is not much to be done for the victim anymore. This is a mistake — someone who suffered brain injury never stops benefiting from a good, strong support network.
While it is true that great improvement can and does occur during the first year, we must never underestimate the power injury victims can show. Improving one’s life after an injury is a journey — it never ends, and every little bit of it, not matter how big or small, is a step in the right direction.
The NRI — Neurologic Rehabilitation Institute — at Brookhaven Hospital, has put together an incredibly comprehensive set of FAQs (Frequently Asked Questions) on brain injury.
What is a severe brain injury?
A severe brain injury occurs when trauma to the brain produces a significant neurological injury resulting in physiologic changes to a person’s brain. Four types of injury may cause trauma to the brain.
Brain injury can be misunderstood, even by the professionals trying to help the victims, as well as their families. One of the biggest questions most patients and families have, is how will the injury affect the patient’s life. Questions arise over the injured’s ability to fully recover, and be able to lead the same productive, active lifestyle they enjoyed before.
How does a severe brain injury affect the individual?
A severe brain injury produces physiologic, cognitive, emotional, psychological and behavioral changes. Some individuals develop medical problems related to specific deficits caused by the brain injury. The part of the brain that is injured determines the long-term effects. Often a severe brain injury involves multiple areas of the brain, resulting in multiple disabilities. Physical functions can be affected, such as standing, walking and eye-hand coordination. Cognitive changes can include issues with memory and language. Personality traits can be affected. People may lose their natural inhibitions and behavior control, leading to inappropriate behavior. The effects of a brain injury can be extremely widespread, impacting all areas of a person’s life and requiring extensive medical and rehabilitative treatment.
The FAQs also covers less-discussed issues relating to brain injury, such as minor injuries, and injuries to specific sections of the brain.
In order to better help those who suffered brain injury, we must stay informed. This is the only way that we can tailor treatment to the injured’s needs, and make sure they receive adequate care — care that will lead to rehabilitation, and a successful life after injury.