Appeared in
Without Prejudice, Volume 66, No.2, October 2001
In my years of administering rehabilitation services for people with acquired brain injuries, I have come across several misunderstandings about this condition; and consequently, several different approaches on how to deal with it. Obviously this impacts on the individual's rehabilitation outcome.
My research on the subject is extensive including a book called "Brain Repair" that was written by internationally renowned neuroscientists, Dr. Donald G. Stein, Dr. Simon Brailowsky, and Dr. Bruno Will. They preface their book with these words, "Sixty years ago, the Nobel Laureate Santiago Ramon Cajal stated that, in the adult brain, nervous pathways are fixed and immutable; everything may die, nothing may be regenerated." Cajal's influence has been legendary, and it appears that conventional wisdom still holds that the human brain cannot repair itself.
Today, remarkable discoveries from laboratories around the world offer a much more optimistic prognosis. For example, a June 15th, 2001 article from the Globe and Mail noted that doctors from Israel injected "immune-system" cells into the severed spinal cord of an American teenager who recovered movement in her toes and legs. These researchers are focusing on brain and spinal cord injuries and are now transplanting immune cells, which are responsible for regenerating tissue in other parts of the body, directly into a "damaged area", in hope they can heal the affected cells.
These treatments are experimental, and create optimism; however, even without such interventions, it should be noted that the brain manufactures a host of complex chemicals that foster growth in damaged brain cells. The book, "Brain Repair", discusses how today's misguided ideas can adversely affect how physicians treat patients. For example, they describe how common drug treatments given to stroke and head trauma patients can actually worsen the affects of brain damage. In one case I was involved with, the client attempted to reenter the workforce after sustaining a minor brain injury; however, his family physician intervened and recommended that he should not continue for safety reasons. In this case, I believe the doctor inhibited the client's "rehabilitation". After all, the client cannot improve if his treating practitioners do not allow him to. There was some question by treating physicians if this person even had an acquired a brain injury, but even if they did sustain a minor brain injury as indicated by another physician, their pre-accident knowledge base should have remained intact. If motivated, clients should also be able to learn new tasks. If a client exaggerates their symptoms, the effects maybe more damaging than a legitimate injury, as the client would have subjected themselves to the whim of practitioners, instead of taking charge of their life. This "learned helplessness" may lead the client down a path that they may never change.
In "Brain Repair", they discuss the psychological aspects of the caregiving environment and how reinforced behaviour will impact on the client, "Chronic-care facilities may be clean and physically comfortable, but it is not uncommon to see their residents sitting about listlessly, dozing, or staring into space. When some type of social program is provided, the residents may be treated as if they were elementary school students, thus creating a vicious cycle of child-like behaviour and dependency..." In the aforementioned case, the client's wife continually yelled at him, and prevented him from actively participating with the rearing of their son. In addition, the rehabilitation programs implemented by his treating practitioners seemed to foster the type of dependency described in the book. It is therefore not surprising that the client was described as a "zombie" by his wife.
The book continues by stating, "Increasing evidence exists that the emotional and motivational state of patients often plays an important role in determining the extent and rate of recovery after brain injuries." For example, if the victim of a head injury is told by his or her doctors that little, if any, recovery is possible, the patient may then make no attempt to cooperate with family or caregivers trying to provide or encourage rehabilitation. For reasons that are not completely understood, patients who are actually committed to recovering seem to do better than those who take a passive and dependent attitude in response to therapy. Chronic administration of mood-altering drugs such as benzodiazapines or antipsychotic medications, can produce a downward spiral of neural and cognitive impairments, including an increased likelihood of epileptic seizures at the cessation of treatment. In this client's case, one physician indicated that there was no further treatment pending, so it seemed peculiar that another treating physician would prescribe anti-anxiety medication. It is important for treating practitioners to provide consistent treatment to ensure maximum outcomes. From what I could ascertain, there was no evidence to suggest that this client could not continue with his pre-accident activities, including employment, if they chose to do so.
After my accident in 1980, but before I acquired my Registered Rehabilitation Professional Certification from the Canadian Association of Rehabilitation Professionals, I was actively involved with the London and District Wheelchair Sports Association. We were always attempting to expand our membership, and on one occasion we had a group of individuals with acquired brain injuries visit our facility. They stayed for several hours, and the support worker who accompanied these individuals, commented on how well behaved, articulate and engaging they were that day. Keep in my mind that these individuals had severe impairments. For example, some were heavily medicated, others had visible skull damage, and some exhibited inappropriate behaviour, according to the support worker. I had not been formally "trained" on how to interact with people with acquired brain injuries, and was just attempting to be a gracious host, yet, these people demonstrated "normal" behaviour that afternoon. In hindsight, if these individuals had been provided with a stimulating and supportive environment, they may have had consistent and significant improvement with their rehabilitation. As noted with the Empowerment Training, people usually respond with behaviour that is appropriate to how they are treated. In other words, if you treat someone like a child, they are more than likely to act like a child.
This negative influence can affect anyone, and not only impact on people with acquired brain injuries. If barriers are created, it can affect the person's behaviour and outcome. Immediately after my accident, I had not yet received my own van; and consequently, I used ParaTransit in London, Ontario to continue with my education. The various drivers would also transport others with disabilities, including a group of individuals who were developmentally delayed, to their various destinations. This was the first time I had been exposed to individuals with Down Syndrome. As the stereotype would predict, they seemed very happy and would sing throughout the trip which made for a lighthearted atmosphere; however, on one occasion, they were very quiet and immediately took their seats which was very atypical. Our conversations were limited and seemed to focus on what they would have for dinner, and predictably it would always come down to either a hamburger or French Fries. After asking the usual questions of what they would have for dinner, they seemed to regain their cheerful disposition; however, the driver interjected stating that they would not know the difference. For individuals who were supposed to be oblivious of their environment, they sure knew when someone was treating them as if they were inferior.
These examples do not attempt to diminish the seriousness of what can be a very debilitating injury, but it should be known that brain injuries can be evaluated with three different diagnoses to describe the severity of the brain injury. The medical community has developed two different scales when assessing the degree of brain impairment and when identifying the seriousness of an injury in relation to outcome. The Glasgow Coma Scale is used at the time of trauma and involves whether the person's eyes are open, whether they respond to verbal cues, and what voluntary motor responses they possess. These responses are evaluated separately according to the numerical value that coincides with the level of consciousness and degree of function. Scores can be as high as fifteen, and as low as three. People with a "mild" brain injury have scores between thirteen to fifteen. A score of nine to twelve is considered a "moderate" brain injury, and a score of eight or less reflects a "severe" brain injury and coma; however, in Ontario, the Insurance Legislation under Bill 59 states for a brain injury to be considered "severe", an individual would have a score of nine or less.
Similarly, the Rancho Los Amigos Scale is most helpful in assessing someone in the first weeks or months after an injury, because it does not require cooperation from the patient. There are Eight Rancho Levels which are based on observations of the patient's response to external stimuli. They provide a descriptive guideline of the various stages a brain injury patient will experience as they progress through recovery. For example, with Level #1 the patient would appear to be in a deep sleep and would not respond to stimuli. At Level #2, they would react inconsistently and non-purposely to stimuli. Their reflexes would be limited regardless of the stimuli. Once at Level #3, the patient responses are specific but inconsistent, and are directly related to the type of stimulus presented, such as turning their head towards a sound, or focusing on a presented object. They may follow simple commands in an inconsistent and delayed manner. If they recover to Level #4, they are at a heightened state of activity and are confused, disorientated, and unaware of present events. Behaviour maybe bizarre and inappropriate, whereas Level #5 the patient would appear alert and be able to respond to simple commands. More complex commands would still be non-purposeful. At this stage, the client is still highly distractible and has learning new information. Memory would be impaired and verbalization is often inappropriate. By the Level #6 the patient usually demonstrates goal-directed behaviour, but relies on cueing for direction. They can relearn old skills, but memory problems interfere with new learning. At Level #7, the patient goes through their daily routine automatically, but with robot-like movements. They usually have appropriate behaviour with minimal confusion. At this stage, they still may require minimal supervision because judgment, problem solving and planning skills are impaired. Finally, if they obtain Level #8, the patient is alert and oriented, and is able to recall past and recent events. They should be able to learn new activities and continue with home and living skills.
It should be noted that just as every brain injury is unique, so too is the rate of recovery. One cannot predict the speed with which a brain injury patient will progress from level to level, or at which level a patient will plateau, but creating a stimulating and positive environment is important.
The Ontario Brain Injury Association produces information dispelling many myths about acquired brain injuries. For example, people with a "mild" brain injury may experience periodic headaches, fatigue and memory problems; however, these symptoms usually only last six months. There is no timetable for recovery as changes may be most rapid during the first six months after injury, or progress may continue at a slower rate for many months and years. It is a fact that individuals with acquired brain injuries usually retain information acquired prior to the injury. It is the acquisition of new information where the problem lies; however, in most cases, individuals with "mild" acquired brain injuries should have a full and complete recovery.
My step-daughter sustained a severe closed brain injury when she was three years of age, and is now twelve. She was comatose at the onset of her injury, and during the acute phase of her rehabilitation, was completely blind, non-verbal, and unable to consume food orally. Through the positive environment created by my wife, she has made significant progress. She is left side hemiplegic, dysarthric, and has ataxia; however, she can now ambulate with splints, a quad cane, and physical assistance. She is also able to manoeuvre both a manual and power wheelchair without crashing into walls. My wife and I attempt to place as much responsibility on her as possible; and consequently, she has regained the ability to speak, bladder and bowel control, and has even learned new skills that were not obtained before the injury, such as reading and writing. The school's June 2001 evaluation determined that she was reading at the grade three level. She also developed intangible skills such as perception and a good sense of humour that specialists indicated she would never possess. Her potential has not been fully realized; however, if we continue to provide a positive environment, she may even exceed our expectations. For example, after we had a recent barbecue, we proceeded inside to have our dessert. My wife and I started a conversation with the neighbours, and typically, in these circumstances our daughter would watch television. This night she had it in her head that she was going to make "Eggs Benedict". Without prompting, she was able to get two eggs out of the fridge, a skillet out of the cupboard, and crack the eggs open (without shells). She then turned on all four gas burners, but lacked the knowledge of how to light them. This was a potentially dangerous situation, but instead of becoming upset, we acknowledged her initiative and instructed her on how to properly use the stove. She is now responsible for putting on the kettle, and seems to have mastered all the steps necessary for this task.
Not everyone will have significant outcomes from their acquired brain injury; however, this is usually with situations that do not provide a stimulating and supportive environment. It has been my experience that individuals with acquired brain injuries will have a better outcomes then what was diagnosed by their treating practitioners if properly motivated. Similarly, common drug treatments can actually worsen the affects of brain damage, and that is why my daughter is not on any medications.
For anyone who has experienced an acquired brain injury, I wish you luck and hope that you are surrounded by people who will allow you to explore your abilities in a safe and supportive environment.
