Presented by
San Diego Brain Injury Foundation
Each injury is unique and its outcome is unpredictable. Many injuries result in devastating, long term effects on the individuals who survive and their families: others may experience a near complete recovery. At the time of injury, loved ones are immediately immersed in a medical emergency and emotional crisis for which no one can ever be prepared. Advances in medical sciences ensure that the complex physical needs of the patient can be addressed: however, the journey family and friends are beginning is long, complicated, and uncertain: devoid of familiar landmarks. This booklet, written from the experiences of others who have traveled similar paths, is meant to assist you in marking your course. You are not alone!
The words "family" or "family member" are used throughout, but in reality includes all persons significant to the injured person, those whose lives have been touched by this crisis. Each of you will approach this booklet with a distinct set of questions and concerns, as each of your situations differs with respect to the age of the injured, the severity of the injury, and your relationship to the injured individual. Therefore, what follows is intended to provide a basic but broad understanding of the issues you may face which you can then apply to your specific needs. Information pertaining to the onset of injury through the initiation of the rehabilitation process is presented. It discusses what has happened and can happen to the injured individual. It also discusses what is happening to you, as loved ones, during this trauma that has, in an instant, changed your lives.
Please read at your own pace. For some, too much detail will be offered: for others, not enough. Read what is most important and useful to you at this time. Use the information to become educated and active participants in the care of your family member as present and future needs are addressed. We hope this booklet will provide the foundation for survivors of brain injury and their families to successfully meet the challenges they will face along the road to recovery.
THE CRISIS BEGINS
Injured individuals are brought to an emergency room, usually by ambulance. The family arrives separately, often after lifesaving measures have been initiated. The hospital itself may not be familiar: dozens of strangers are caring for the injured person, your loved one. This is a period of great confusion, anxiety and terror for those in the waiting room, information regarding the patient's status is scarce. When sufficiently stabilized, the patient is transferred to the intensive care unit, and a new set of medical team members begin to manage his/her care.
In the midst of this medical emergency, you as family members are also in crisis. Feelings of helplessness and lack of control can become overwhelming. At a time when you are desperately seeking answers, you are given vague responses and uncertainties about your loved one. Information is not being withheld from you, as recovery from brain injury is an unpredictable science. When pressed for details, staff members may present a pessimistic picture. But the unknown can have another face, and that is one of optimism. Therefore, as you start your journey, your greatest challenge presents itself. Listen and learn, but begin to believe that out of uncertainty you can choose to read hope, which even if it remains tentative and cautious, will help to guide you through your fears.
Now your important role can begin. As family members, you are the only consistent focus for the brain injured individual during the ever changing cast of team members and environments he/she will experience during hospital and rehabilitation care. Sustained involvement and support by family has been shown to be one of the most significant factors affecting the recovery of the brain injured survivor. Equally important, is to ensure the earliest possible access to appropriate rehabilitation. Your assistance in planning must begin as soon as the threat of dying has passed. For the health care staff, you represent the past, present and future of this individual whom no one else has ever known. As recovery from brain injury can take many forms and can effect many areas of functioning, your input about your loved one for assessment, treatment, and planning is invaluable. Though you walked into the hospital as a "visitor", you will rapidly become a key member of the "team" as recovery and rehabilitation of your loved one proceeds.
TAKING THE FIRST STEPS
The most important tool for your journey is information. This will permit you to understand what has happened, and assist you in evaluating the various options for treatment and rehabilitation you will be asked to choose from. What follows are strategies found useful by others to help begin this process; to guide you in negotiating the unfamiliar territory you are now into permit necessary education to occur. Utilize the skills of specially trained hospital professionals social workers, psychologists, nurses, therapists, etc. to help you adjust to the crisis you are in and to accomplish these tasks during these particularly difficult times.
DESIGNATE A FAMILY SPOKESPERSON. This enables information to be transmitted more reliably between the medical team and the family. The relationship of this individual to the patient will vary from family to family, and may depend on their availability and familiarity to the patient and the setting.
Identify the team members responsible for the care of your loved one, and which ones are key members coordinating the treatment plan. Request that the team spokesperson or coordinator determine a reasonable and reliable mechanism, either by in-hospital meetings or by phone, by which updated medical information can be obtained.
The medical team may include some or all of the following members, learn their names and their role.
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Learn the language of brain injury and the medical setting. Have all medical information presented to you in understandable terms, with diagrams if needed. Familiarize yourself with the sights and sounds surrounding your loved one as it will lessen some of your fears and anxieties. It will also present you with a framework to ask questions of the professionals involved. Many of these terms are defined in the text that follows as well as in the glossary found at the end of this booklet.
Identify and consult with your case manager/discharge planner to obtain community resources most familiar with the specific issues presented by the crisis of brain injury and the complex, long-term recovery process. Obtain up-to-date resource options for planning: network with other survivors of brain injury and their families for support and information.
Start a journal. Record all treatments and information about your loved one's medical status: record any significant contact names/numbers for individuals and/or agencies that can assist you with planning for the future. Record any observed changes in functioning by you or other visitors during contacts with the injured person, to share with team members. Use your journal as a diary to monitor progress towards recovery over extended periods of time, and not just day to day as well as questions for the team.
Armed with these strategies, the long, uncertain, and often frustrating journey for you and your loved one can begin.
WHAT IS BRAIN INJURY?
Brain injury can occur to anyone at any time. The statistics are staggering. Over 2 million people suffer brain injuries per year, with 500,000 to 750,000 injuries being severe enough to require hospitalization. Seventy-five thousand to 100,000 injuries result in death. Between 70,000 and 90,000 survivors are left with long-term deficits or disabilities. It is estimated that only 5% of these individuals get the help that they need. By reaching out for education and assistance, your loved one becomes part of this important minority.
To understand what happens as a re result of an insult or injury to the brain, it is necessary to have some basic information about the brain, what it does and how it works. The brain is a very complex and vital organ. It govern and regulates everything that makes a person who they are - from the way he/she breathes, walks and talks, to the way he/she thinks, feels and acts. Damage to any area of the brain can therefore significantly alter normal functioning.
Under normal conditions, the brain is well protected. It sits inside a bony case, the skull, held in place by 3 linings, the meninges. The cerebrospinal fluid (CSF), which surrounds it, allows the brain to float like a boat on water. This clear fluid fills all open spaces, nourishes it, and cushions it against shocks. Six times a day, new fluid replaces the old. The brain is also actively nourished by its blood supply, as roughly 20% of the blood pumped by the heart goes to the brain.
The brain itself is divided into lobes, each with its own specific function and yet interdependent on each other to perform their roles. Six billion nerve cells in the brain actively receive, interpret, store, react, and transmit messages to and from all comers of the body, to maintain our daily physical, intellectual, and emotional well-being. The brain communicates through a complex system of nerve fibers that stretch from the brain, through the spinal cord and out to the tips of our fingers and toes. Maintaining normal functioning is an intricate, finely tuned, and miraculous process.
HOW BRAIN INJURY OCCURS
Injury can be traumatic or non-traumatic. When the head is hit or strikes an object, the skull can be bruised or fractured, and the force sent on to the brain. If the impact is strong enough, the brain coverings and the cushioning capacity of the fluid the brain is floating in, are not sufficient to protect the brain. Trauma to the brain can occur without the skull being broken, and sometimes even without any external evidence of an impact. Non-traumatic brain injury can be stroke, aneurysm, tremors, or degenerative neurological disorders.
To understand the mechanisms of injury, more anatomy must be learned. While the outside surface of the skull encasing the brain appears mostly smooth, the inside surface is quite different, with many irregular contours and bony ridges. If your head hits a steering wheel, if you fall head-first off a bicycle, without a helmet, if you tumble down a flight of stairs, your brain - as well as the rest of your body - gets shaken up. The brain bounces against the skull, hitting and rehitting the ridges, as it reacts to the force it experienced. This starting and stopping movement of the brain accounts for the primary mechanism of brain injury. Bruising, hemorrhaging and even stretching or tearing of delicate nerve fibers in the brain can result from these impacts: the damage tends to be localized or focal. If the skull is fractured, i.e. and open brain injury, more damage can occur from the added changes in the skull's contours.
Diffuse brain trauma occurs when the nerve fibers through the brainstem and into the brain are stretched or distorted. Located at the base of the brain, and connected to the spinal cord, the brainstem is the region of the brain that controls the very basic functions of survival - breathing, heart rate, wakefulness, muscular tone and reflexes: and represents the conduit for information that is necessary for adequate functioning of all other areas of the brain. Injury to this region can be short-lived, prolonged or even permanent, and can clearly have a profound effect on the observed status of the individual. Focal and diffuse types of injury can occur separately, however they are most frequently seen simultaneously.
The brain can be damaged at the time of initial impact, or suffer secondary injury due to swelling of the brain inside post injury when cerebrospinal fluid accumulates, causing intracranial pressure to increase on delicate brain tissue. Delayed bleeding into the brain from damaged blood vessels, forming hematomas, can similarly injure the brain. Preventing secondary damage is the primary challenge of the medical team during the initial period following a traumatic brain injury.
CONSEQUENCES OF BRAIN INJURY
Injury to the brain can result in a wide range of outcomes effecting physical, cognitive, and/or behavioral areas of functioning, with deficits being short-lived, prolonged or permanent.
Physical symptoms are the simplest to describe, and even when representing serious impairments, may be the easiest to learn to cope with and rehabilitate. Examples may include seizures, loss of motor control and coordination, sensory problems (i.e. being unable to see due to injury to the optic nerve or being able to see but experiencing altered perception of what is being viewed); speaking and swallowing disorders; fatigue and headaches; bladder and bowel incontinence.
Cognitive symptoms are more difficult to demonstrate as they are invisible to the unfamiliar observer, and therefore require specialized skills to recognize and rehabilitate. Cognitive abilities are those that define our intellectual and information processing capabilities. Performance, attention, organization, initiation/planning of tasks, memory, flexibility, perception, judgement and sensitivity, are examples of cognitive functions that can be impaired by brain injury. These functions are concentrated in the frontal and temporal lobes of the brain which are the most common sites of injury during a fall, accident or traumatic assault. Being more subtle, deficits in these areas often have a more profound impact on daily functioning and quality of life.
Personality changes and loss of social control and awareness are behavioral symptoms frequently observed in the brain injured individual. These changes can be very difficult for family members to cope with. Aggression, restlessness, sexual disinhibition, impulsive behavior, along with mood swings and depression are described. Behavioral difficulties can be a direct consequence of the brain injury or can represent symptoms of the emotional struggle to adjust to the trauma and associated deficits.
Physical, cognitive and behavioral symptoms interact in many different, ever-changing ways. Even mild deficits in these areas can interfere with personal, academic and professional success. Developing and accomplishing an appropriate rehabilitation plan presents a complex challenge for even the most highly skilled and sensitive professionals.
THE HOSPITAL STAY
INTENSIVE CARE
As it's name implies, this is a time of much activity in the care of your loved one, his/her survival and physical needs are the primary concerns of the staff. Injuries in addition to the brain trauma are addressed, surgical procedures often required. Each organ system is monitored, and assisted with specialized equipment, if necessary, to maximize wellbeing. Some of the most frequently utilized equipment and treatments that you may encounter in intensive care are described below. Members of the team will be able to explain further these examples as well as others that may be specific to your loved one's status.
INTRAVENOUS LINE (IV) - a small plastic tube inserted into a vein in almost any part of the body, commonly in arms, legs, neck or chest. Fluids, nutrients, and medication can be administered through it. Once in place, an IV is usually painless.
ARTERIAL LINE - similar to an IV, this is a line placed in an artery, usually the wrist, which also should not cause pain once placed. Samples of blood can be easily withdrawn from this tube to monitor oxygen and other vital chemicals to assess patient status without repeated needle sticks.
CARDIOVASCULAR MONITOR (TELEMETRY)- through wires and small pads called electrodes attached to the body, heart rate and heart rhythm are monitored. Constant blood pressure readings are also provided through the arterial line discussed above. Alarms alert the staff to any irregularities, however these do not necessarily mean that something is wrong. Often the alarm sounds if the patient moves around in bed or the electrodes become loose.
NASOGASTRIC TUBE (NG TUBE)- a clear plastic tube about the size of a straw that is inserted through the nose down into the stomach. Air and digestive fluids are withdrawn through it; it may also be used as a feeding tube. Patients have described this tube as uncomfortable, but not painful.
ENDOTRACHEAL TUBE (ET TUBE)- maintains open airways for the patient who is unable to breath deeply and regularly and has trouble clearing his/her air passages. Oxygen flows through this tube at a controlled rate and depth. The tube is passed through the nose or mouth, and into the windpipe; mucus can be suctioned out as well.
TRACHEOSTOMY - an artificial airway surgically opened directly into the windpipe of the patient through which oxygen can be provided; usually performed if breathing must be controlled over an extended period of time. Tracheostomies are easier to manage and reduce any irritation to the nose and throat that may occur with continued use of an endotrachealtube.
VENTILATOR (RESPIRATOR) - a machine that assists a patient's breathing by moving oxygen in and out of the lungs through the endotracheal or tracheal tube. The ventilator can be activated by the patient's own breathing effort or can be automatically set to deliver breaths at a given rate and volume. Sometimes the ventilator is used to provide a rapid breath rite as a treatment for increased intracranial pressure, bypassing the patient's normal breathing reflexes.
SUMARACHNOID BOLT (ICP BOLT) - a device surgically inserted through the skull to continuously measure intracranial pressure. Resting on the brain, pressure levels are read by a special monitor the bolt is attached to. A similar device is a ventriculostomy catheter which is inserted into the spaces within the brain to measure pressure. In certain conditions, small amounts of cerebrospinal fluid (CSF) can be withdrawn to relieve any increasing intracranial pressure.
ACUTE HOSPITAL CARE
As the hospital course continues, the focus of care of our family member may change. He/she may be transferred from intensive care to a regular hospital unit. Physical care continues to be essential for wellbeing but may become less complex, and may consist of some of the following components.
AIRWAY MANAGEMENT - tracheostomy tube left in place after the ventilator has been removed, is kept moist by humidified air through a mask over the opening. Secretions kept moist in this manner are more easily coughed up or suctioned.
MAINTAINING FLUID BALANCE AND NUTRITION - in patients unable to eat or drink for a prolonged period of time, tube feedings may be required. A gastrostomy tube (G-tube) may need to be surgically placed through a small incision directly into the stomach. This tube eliminates the irritation that extended use of a nasogastric tube can cause.
PREVENTING EYE IRRITATION - lubricating drops placed into the eyes keep the eye membranes moist when injury has interfered with the normal blinking reflex.
SKIN CARE - bedsores (decubiti) can occur with patients that remain to one position for a long time. Frequent repositioning, moisturizing lotions and protective devices for knees and elbows, and special mattresses that redistribute weight, are used to prevent skin irritation.
POSITIONING AND EXERCISE - to prevent future dysfunction and further loss of mobility. Physical therapy begins as soon as possible to maintain muscle tone and strength. splints for arms, legs, feet, hands, and neck are sometimes needed to stabilize joints and keep proper positioning.
Medically this transfer signifies that the status of the patient has stabilized to the point that intense observation is not needed. While this should be considered a step forward for the patient, family members frequently experience great anxiety as the transfer from intensive care occurs. You have learned to feel secure with the staff and the level of care your loved one has been receiving, and now have to adjust to new faces and fewer staff members assisting with their care. And while physical needs may be lessening, cognitive and behavioral symptoms may be becoming more evident adding to your anxiety and insecurities, and again fueling your fears.
Return to the strategies you learned before. Ask the team to teach you how to perform some of the care tasks of your loved one so you can become a participant in maintaining his/her well-being. Continue to educate yourself about the cognitive and behavioral changes that you are observing, to replace fears with an understanding of the process of brain injury recovery.
CLASSIFICATION OF BRAIN INJURY
COMA - no response to external stimuli (pain, touch, sound). Does not follow any commands, eyes are closed and does not demonstrate intentional movement.
VEGETATIVE STATE - eyes are open and may show roving eye movement and blinking. Complete loss of the ability to interact with the environment despite the capacity for spontaneous or stimulus-induced arousal.
PERSISTENT VEGETATIVE STATE - person has a chronic condition in which bare arousal (wakefulness) and life-sustaining functions (respiration, blood pressure) are generally intact, however inability to interact with the environment persists.
The severity of a brain injury is assessed in a number of ways. Mild, moderate, or severe injury can be broadly described by the length of time, if any, an individual has lost consciousness, and the cluster of symptoms initially evident. For example, a survivor of a mild brain injury would most likely have lost consciousness for less than 20 minutes (or not at all), and experienced some neurological symptoms such as dizziness, nausea, and blurry vision. An individual having suffered a severe injury would have been in a coma for at least one day, and have a more profound set of physical and cognitive deficits.
In the initial period following a brain injury (in the E.R. & ICU), the most common classification tool is the Glasgow Coma Scale. Using a numerical system, the levels of three main responses are graded - eye opening, best verbal response, and best motor response - with scores ranging from 3 to 15 obtained. The scale, outlined below, differs slightly for children.
GLASGOW COMA SCALE
Response Score
Eye Opening Spontaneous .................................1 To Speech ...................................3 To pain .....................................2 None ........................................1
Best Motor Response Obeys commands ..............................6 Localized movements .........................5 Withdraws ...................................4 Abnormal bending and flexing ................3 Involuntary straightening and extending .....2 None ........................................1
Best Verbal Response Is oriented .................................5 Confused conversation .......................4 Inappropriate words .........................3 Incomprehensible sounds .....................2 None ........................................1
In the E.R. & ICU, this tool is a reliable measure of the degree of nervous system or brain impairment. In general, the more severe the injury, the lower the performance score. The scale does not necessarily predict how someone will eventually function in the outside world and it does not predict the level of independence an individual can attain following a brain injury.
Hospital staff utilize additional diagnostic tests to determine the site and extent of the brain injury. These may include the following:
SKULL AND NECK X-RAYS - to rule out any fractures. 0
CT OR CAT SCANS - a CT scan (computerized axial tomography), is a special type of X ray that works along with a computer. Areas of the brain can be examined for signs of swelling, bleeding, fluid collection and damage.
MRI - magnetic resonance imaging, is similar to CT scanning. Using magnetic fields instead of x-rays, MRIs can pick up very slight changes in brain tissue, not evident on regular x-ray or CT scan. It's sensitivity makes this test especially important in assessing mild brain injuries.
EEG - an electroencephalogram records the electrical activity of the brain. In a similar manner an EKG (electrocardiogram) assesses the heart. Patients with seizures frequently undergo an EEG to locate any sites of abnormal activity in the brain.
Each of these tests provides unique information to the health care team, and are painless procedures for the patient. Findings of these tests, along with the functional evaluation provided by the Glasgow Coma Scale, guide treatment during this early, rapidly changing period following the onset of injury.
RECOVERY CONTINUES
As recovery progresses, the Ranchos Los Amigos Scale of Cognitive Function becomes the tool most widely utilized to assess cognitive and behavioral functioning. This describes the cognitive and behavioral status of the individual at the time, and directs the planning and evaluation of treatment plans and goals throughout the entire recovery process. It also represents a non-medical framework for family members to begin to understand brain injury in a way that helps them interact with their loved one in a more sensitive, positive manner, contributing to the rehabilitation process.
The Ranchos Los Amigos Scale consists of three levels, and is described below. Individuals go through these levels at different rates, and improvement may vary at any level. Individuals may fluctuate between two levels at the same time. Suggestions for working with your family member at each stage of recovery is provided.
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LEVEL I - NO RESPONSE
The individual appears to be in a deep sleep or coma, does not respond to any stimulus including pain, voice, or visual images.
It is not really known what an individual can hear and understand while in a coma or early stages of recovery. Family and staff should therefore monitor their interactions and conversations at bedside, always keeping in mind the possibility some activity may be remembered.
LEVEL II - GENERALIZED RESPONSE
The individual remains primarily asleep, but may begin to respond to certain stimuli such as pain. Some body movements and eye opening may be observed, but activity is without purpose and inconsistent.
During periods of wakefulness, provide simple and meaningful stimulation. Describe activities to your loved one such as "now I am washing your right hand". Speak in slow, calm, and normal tones, and show affection often, in whatever way you can. When eyes are opened, try to have him/her look at you and at other visitors. Keep periods of stimulation brief (5-15 minutes), as your family member has to rest. Family and friends should share stimulation responsibilities as you too have to rest.
LEVEL III - LOCALIZED RESPONSE
The individual remains alert for several minutes at a time, responds more consistently to general stimuli i.e. turns head to noise, looks at specific people and objects Simple commands such as opening mouth or eyes, or squeezing a hand, are followed, although responses may occur only sometimes and may be slow.
Keep environment as quiet as possible, eliminating visual distractions. Try to speak with your family member at eye level, sitting close and relaxed to let them know you are truly interested in what they are doing and saying.
Increase and direct stimulation efforts at reorienting your family member with who they are and what has happened. At each visit, describe who you are, provide the date, where they are and why. Bring familiar and significant objects to the individual; provide photographs of family and friends, identified by name on the back to assist staff who can also help stimulate his/her memory. With increased periods of alertness, discuss significant past, such as school, employment, longtime relationships, hobbies.
Continue to ask for simple commands to be followed, initiate and assist with self-care tasks. Ask simple questions that require only "yes" or " no " answers, allowing time to respond. Remain patient and sensitive to signs of frustration.
LEVEL IV - CONFUSED AND AGITATED
This stage is marked by periods of strange, often aggressive behavior. The individual may become agitated or verbally abusive with the slightest provocation. He/she may attempt to remove restraints, crawl out of bed, and resist treatment efforts. Memory may be only of events that occurred prior to the injury. Conversations may be confused and incoherent. Attention spans are limited, the individual requires constant cuing for self care tasks.
This is a time of great personal chaos and disorganization for the brain injured person, who cannot be held responsible for his/her behavior. Outbursts are most likely in response to the confusion being experienced. The individual has not suddenly changed into a hostile person, he/she is most likely very frightened.
The goals of this stage are to decrease agitation and increase awareness. Use calm, soft speech and slow careful movements to lessen the tendency for agitation. Continue to provide opportunities for the individual to respond to stimuli and simple commands, encourage and assist with self-care tasks, continue to associate the individual with familiar things. Remove distractions such as TV or radio, to restrict stimulation to one sense (auditory, visual or tactile) at a time. Attempt to correct an inappropriate or inaccurate response, but do not argue the point. If confusion and agitation is ongoing, do not try to rationalize with the person, allow him/her time to relax. Do not ignore them however, instead provide human contact and soothing reassurances. Avoid sedatives as they can slow the thinking process, and add to the confusion. Seeing a family member engage in unusual and aggressive behavior is very difficult to endure. Try to remember not to take any of the comments and behaviors personally. The Confused-Agitated stage is a sign of improvement, and a necessary step towards recovery.
LEVEL V - CONFUSED, INAPPROPRIATE NON-AGITATED
The individual appears alert, follows simple commands with good consistency, however complex commands are difficult. He/she is easily distracted, requires repeated refocusing to concentrate on activities. Long-term memory is becoming more apparent, but short-term memory capabilities are limited. Overlearned, routine tasks such as dressing and eating may be successfully performed, but he/she is unable to learn new skills or process new information.
Continue to help the individual get back in touch with the world, discuss family and friends, and events he/she has experienced during the day. Try to have information recalled, providing hints to stimulate memory, for example, ask immediately after breakfast what he/she ate. If unable to remember, be more specific. Ask what he/she drank. If it was milk, describe it as white. Encourage success with generous praise, noting accomplishments. Do not allow tasks to become overwhelming however, as tolerance for frustration is decreased. Simple memory and card games may be tried at this stage. Try to keep routines consistent to help organize the individual. Discuss problems he/she is having related to the brain injury honestly and matter-of-factly. Use a calm soothing manner always remembering to address the individual in an age-appropriate fashion.
LEVEL VI - CONFUSED, APPROPRIATE
The individual's speech 'makes sense, and simple directions are followed with consistency. Routine tasks such as feeding and dressing are performed, however initiation and ending may need cuing. Learning new activities remains difficult due to continued short-term memory deficits. Attention span expands to about 30 minutes.
Work towards increasing independence during this stage, by gradually decreasing assistance provided for simple activities. Offer games and crafts that become more mentally challenging but not frustrating. Discuss TV shows, conversations, and events immediately after he/she has seen or heard them. Use each situation as a learning experience to help the individual begin to arrange and understand each part of daily life. Activities we take for granted may be difficult for the individual to accomplish. Ask to have familiar tasks such as making coffee, changing money, or washing clothes described in steps; or well-traveled trips such as to school, stores, or friends' homes mapped out. Be sensitive to tolerance levels and signs of fatigue. Keep activities at a moderate pace, and always allow time for rest.
LEVEL VII - AUTOMATIC, APPROPRIATE
The individual is able to perform daily routines automatically, with little or no confusion, but has limited recall of what was accomplished. He/she lacks adequate insight into the extent of any remaining deficits; judgement and problem-solving capacities may be impaired. He/she is not able to plan realistically for the future. The ability to learn new information is improved, although this occurs at a slower rate than before the injury. For safety, some supervision is required. Some interest in social and recreational activities is regained.
The major goals of this and the next level of recovery are to promote independent skills to permit supervision to be safely withdrawn. During this stage, "real-life " activities of increasing complexity such as shopping or use of a telephone directory and/or map should be attempted. Situations of daily living at home and in the community should be discussed, with multistep planning and possible dangerous aspects explored. Use and expansion of judgement skills should be emphasized. Patience during interactions is needed as the processing of new information may be slowed.
LEVEL VIII - PURPOSEFUL, APPROPRIATE
Memory for past information is good, however short-term memory may remain somewhat impaired but improving. Increased capacity to initiate and execute complex tasks is demonstrated. Need for supervision of activities is diminished. Some decreased ability to reason, tolerate stress or utilize good judgement in unusual situations may be exhibited. Social, emotional, and intellectual skills may continue to be less than before the injury, but are good enough to function successfully as a member of society.
Maximum involvement in home, school, or job within the individual's physical and intellectual capabilities should be encouraged. Responsibilities for one's own needs as well as in home and community should be resumed. Complex tasks such as total meal planning and preparation, organizing chores into a daily routine, and planning leisure activities can be initiated independently. The individual should be encouraged to develop and utilize aids such as memory books or reminder lists to assist him/her with accomplishing goals.
During these later stages, counseling may be indicated to assist the individual in gaining insight into the changed levels of functioning that he/she may be experiencing, and to develop coping strategies if deficits preclude a return to previous educational or vocational status.
The survivor of brain injury must be provided with the opportunity to maximize his/her potential to regain the ability to:
Love, work, and enjoy life in our society. |
The brain injured individual begins recovery as soon as he/she survives the trauma and becomes medically stable. This process is initiated in the intensive care unit, and can last a lifetime. The extent of recovery cannot be predicted. However, regardless of the degree of the injury - mild, moderate, or severe -successful treatment of brain injury most frequently requires specialized rehabilitation. Retraining and relearning takes time, consistency, expertise, and a structured, safe, nurturing environment. Appropriate rehabilitation provides the map and the fuel for the complex journey towards recovery, the final destination being independence.
Rehabilitation is not a magical process. Using sophisticated professional skills, brain injured survivors are trained to maximize ability ties still present or beginning to return, and are taught compensatory strategies for deficits that remain. Physical therapy is a discipline most are familiar with as it involves regaining and strengthening of physical movement and function, and/or use of assistive equipment such as wheelchairs. Occupational therapy focuses on regaining fine motor skills and retraining an individual in activities of daily living such as personal care, cooking and shopping. Cognitive rehabilitation addresses more subtle, yet very basic needs including memory, attention deficits, planning, problem-solving, organization, behavior and social communication, and comprehension. Skill building and compensatory methods in both physical and occupational areas overlap with cognitive goals. The capacity to use a wheelchair, or to prepare a meal for example, is enhanced when one's problem-solving, planning, and memory skills improve, demonstrating the need for a sensitive and comprehensive therapeutic approach, Rehabilitation also involves education and support for both the survivors of brain injury and their families, as adjustment to possible lifelong deficits and altered lifestyles becomes necessary.
TYPES OF REHABILITATION
Many rehabilitation programs incorporate elements of some or all of the phases described below, and some specialize in one area. Use what follows as a general guide when exploring options appropriate to the needs of your loved one.
ACUTE INPATIENT REHABILITATION - Individuals begin this phase of rehabilitation as soon as they are medically stable and transferred from acute hospital care. Programs usually focus on intensive cognitive and physical restorative therapies in the early months after injury. Programs may be short-term (3-4 months) and hospital-based. Many programs combine acute and post-acute elements and can extend longer, and may be based in specialized skilled facilities.
OUTPATIENT - Outpatient, non-residential programs offer interventions across all disciplines, addressing the advanced needs of the brain injured survivor not requiring an inpatient program. Treatment plans are varied in length and scope according to the unique needs of the individual.
Tle task of planning for the rehabilitation of your loved one is complex and often overwhelming. This process should ideally begin as soon after injury as possible, even if he/she is still in the intensive care unit. Unfortunately, this is the time when family members are at the height of emotional turmoil about what has occurred. But remember, it is through rehabilitation that hope can replace fear, and action can replace feelings of helplessness. The medical staff is addressing the immediate needs of your family member; this is then the time you can safely begin to look towards their long-term needs. A comatose individual would greatly benefit from the earliest initiation of a sophisticated coma treatment program. many brain injury programs are hospital-based or in specialized skilled settings that can manage complex medical needs such as ventilators, to be feedings, kidney, cardiac and orthopedic problems. Utilize the support of family and professionals and the strategies outlined below to initiate the process.
REQUEST A TEAM MEETING - The health care team is comprised of -the professionals outlined earlier. They can provide an assessment of the current and anticipated needs of the individual so that appropriate rehabilitation settings can be explored. Identify the specific team member, usually a social worker, who will be coordinating the discharge planning process. Work closely with him/her as you are considering options.
IDENTIFY REALISTIC OPTIONS - Many factors are involved - the medical, cognitive, and behavioral status of your loved one; insurance/financial resources; accessibility for visitation. Utilize the expertise of the health care team to clarify some of these issues. Consult with specialized community agencies to ensure that all viable options are being identified from the constantly expanding list of resources, which in ten years has grown from 20 to over 700 facilities nationwide. Unique programming addressing a variety of special needs such as substance abuse, visual impairments, and behavior management, is increasing. Financial requirements and funding resources also frequently change.
CHOOSING A FACILITY - Once a list of appropriate rehabilitation settings has been identified, you and other family members should tour. You have been educated about brain injury and have consulted with team members and community experts about the specific needs of your loved one. You have learned what to look for in a rehabilitation facility - such as the experience of the therapists, the program specifics, the involve ment of families, the communication process, the client population, and the physical environment. You will also explore with the staff at the facilities how treatment plans are determined and changed, and how discharge to home and/or to other settings for additional phases of rehabilitation is assisted and accomplished. A guide of questions and areas of concern to use while touring is available through the Brain Injury Foundation. Networking with other families familiar with the various facilities will also assist in the process.
Your final decision will be based on a combination of issues. You will choose a facility that offers an appropriate program for your loved one, while balancing the difficult issues of distance and separation. But using what you know about your family member, his/her personality before the injury, as well as your eyes, ears, and instincts, you will choose a setting that your loved one will feel comfortable in and that will provide the expertise and sensitivity necessary for rehabilitation to occur in an atmosphere of dignity and respect.
FINANCIAL ISSUES
Financial concerns fall into two main categories - the availability of funds to finance the rehabilitation process, a very costly endeavor; and the sources of income that can be accessed to meet the short and long term non-medical needs of both the survivor and the family. Access to realistic choices for rehabilitation is linked to insurance resources; maintenance of the family's well-being and household is contingent on continued monies. Sorting out and addressing these complex issues can be very stressful for a family already in crisis. However, clarification of both of these issues is critical. Some of the primary areas to explore are outlined below. Designated professionals in the acute care setting can assist you.
The major sources for the funding of rehabilitation services follow, useful contact numbers are provided:
COMMERCIAL INSURANCE - This includes any private insurance policies the brain injured person may have through an individual or group plan. Benefits through Veteran Administration may also be available. Health insurance covers the medical costs incurred as a result of an accident or illness. If the brain injury involved a motor vehicle, an attorney should be consulted regarding legal and insurance issues. In both cases, the amount of coverage and the services they will finance widely varies from policy to policy, and benefits should be carefully explored. Case managers are frequently assigned by the insurance carrier to assist in determining appropriate usage of available insurance dollars.
MEDI-CAL - This is a state and federally funded program, available through the county Department of Social Services. Eligibility is based upon financial and medical needs. There are certain restrictions on what Medicare will cover, including types of treatment, equipment, and medication.
MEDICARE - Medicare is available to persons age 65 and older and for those persons who have received Social Security Disability income for at least two years. Medicare is administered by the Federal Government, and applied for through the Social Security Administration. Coverage for the ongoing needs of the brain injured survivor is frequently limited under this benefit.
WORKERS' COMPENSATION - If injured while working, Workers' Compensation represents a very viable resource for funding of treatment needs. Strict eligibility requirements exist and need to be clarified with the appropriate employer and state offices. Once approved, coverage frequently extends to a wide range of services.
CRIME VICTIMS COMPENSATION - Individuals are eligible for benefits through this source if the injury was the result of an assault or violent crime. Approval for benefits is through an application process initiated by contacting the local administrative office.
Sources of income can similarly cover a wide range of options and must be carefully explored. If the injured individual was fully employed at the time of the injury, the employer would be contacted immediately to ensure that all benefits that the person is entitled to are available. Ask about pay due to vacation time, sick leave, long-term disability income, possibility of an extended leave of absence being granted, and eligibility for pension benefits. Some insurance policies provide for supplemental income following accidents. Workers' Compensation may also provide income in some cases.
Income from public agencies is available, but very limited. The principal sources are listed below:
SUPPLEMENTAL SECURITY INCOME (SSI) - SSI is available to disabled individuals who have never been employed, or were disabled prior to having contributed to the Social Security fund, through employment, for a sufficient amount of time. Certain financial requirements must be met. Application is through the Social Security Administration.
SOCIAL SECURITY DISABIL17T INCOME (SSDI) - This aid is available to individuals whose disability occurred within 5 years of their last employment, and have been employed a required number of quarters. Widows/widowers who become disabled, are eligible for this benefit if their deceased spouse would have met the requisite employment criteria. There is no financial test for this benefit. Application is through the Social Security Administration.
AID TO FAMILIES WITH DEPENDENT CHILDREN (AFDC) -This aid is available to families with minor children at home in which one parent is disabled. Certain financial requirements must be met. Application is through the local Department of Social Services.
LEGAL ISSUES
Whenever a significant disability results from injury or illness, many immediate and long-term decisions must be made. The scope of these issues depends on the age of the individual, the severity of injury, and the predicted prognosis for any changes in status of the individual. The individual's personal property and daily needs must be managed and the family must be protected from having the disability of the injured family member compromise their capacity to conduct their affairs. Caregivers for dependent children may need to be designated. Many technical and complex details are involved. Decision-making power for treatment and rehabilitation planning, eligibility for and access to public funds, lawsuits related to the injury, estate planning, protection of settlements and awards to ensure maximum access for as yet unclear long-term care needs, are examples of areas related to the needs of the injured individual. Each family situation is unique and specific issues must be carefully explored. Some of these areas are presented below to educate you and to alert you to crucial concerns that might be overlooked during this difficult time.
Please note that the advice of attorneys experienced in the legal, financial, and long-term issues specific to survivors of brain injury and their families is critical at this time, as these and other options are being considered.
POWER OF ATTORNEY - a "power of attorney" is a written instrument by which one person (principal) appoints another person (agent) to act on his/her behalf. This agent is given authority to make decisions and to designate professionals to perform certain acts including medical treatment and financial decisions, the scope of which can be broad or restricted. The choice of the agent is very important as their authority can be extensive, and under little, if any, court supervision.
The advantage of the power of attorney is that it legally allows one person to handle the affairs of another without the cumbersome proceedings of the guardianship process. However, in some cases, questions of capacity and competency might prevent the brain injured individual from executing a valid power of attorney.
GUARDIANSHIP - Guardianship is a legal relationship between one individual (guardian) and a disabled individual (ward) which gives the guardian the duty and right to act on behalf of the injured person; to make personal, legal, and financial decisions that may affect all aspects of the injured person's life. The appointment of a guardian is directed by the court once the injured person is determined to be "incompetent". This is a designation, by a judge, based on medical documentation, that the individual is unable to manage his/her affairs, money, or property. A guardianship can be revoked, by the court, if the status of the individual is shown to have changed.
A guardian of the person and property can be a family member, or any adult over 18 years of age whom the court feels is responsible enough to safeguard the best interest of the injured person. Banks may also be designated as guardian of the property if there are substantial assets to be invested, and in some instances, when the injured person is a minor. The court closely monitors the activities and usage of monies by the guardian on behalf of the injured person.
The benefit of the court-appointed guardianship process is that the injured is assured through the legal system that some agent will always be responsible for the management of his/her affairs. An informal "guardian" arrangement is subject to unpredictable developments, including the disability or death of the "guardian", which may then affect the well-being of the injured person. While guardianship proceedings can be complicated and often emotionally difficult for families to address during the early period following the injury of their loved one, the need for initiation of the process should be determined as soon as possible. It is recommended that family members meet jointly with the social worker, physician, lawyer, and proposed guardian, to assist in reaching a consensus on this option.
CONSERVATORSHIP - Conservatorship, also a court designated relationship, represents an alternative option to consider when an individual is no longer able to manage his or her own affairs. Conservators' responsibilities include primarily financial management for the injured individual, but can extend to issues related to maintaining the individual's personal well-being. A judicial declaration of incompetence is not needed.
TRUSTS - The use of a trust can be an additional method for managing the property of someone who cannot manage it on their own. The "trustee" handles the investment and distribution of monies in a manner that is intended to benefit the disabled individual. The trustee must avoid any conflicts of interest, his/her standard of conduct is enforceable by law. An institution such as a bank can be named as a trustee, and may be preferable if the trust property requires expert management. Trusts can be designed to be flexible, often used with minors as their financial needs and resources may change when they reach majority; or rigid, permitting predetermined benefits at specific times to be dispersed.
ESTATE PLANNING - Trusted advice on estate planning issues is critical and should be ongoing as the effects of brain injury can last a lifetime. Trusts to ensure adequate financial resources for the injured individual after the death of the caregiving family member can be established. Advantages and disadvantages of various settlement forms (structured vs. lump sum), secured trusts, changes in relevant laws, are examples of the concerns you as family may be faced with over time. Any present assets and those that may be gained from legal proceedings must be organized, invested, and protected in realistic forms that permit access to care and appropriate services to meet the long-term and often unpredictable concerns of the brain injured survivor.
No one is emotionally or physically prepared for what happens when a family member is brain injured. The entire family system, and not just the individual has been "injured". Each person in the family reacts differently depending on who the injured person is - child, spouse, parent, sibling, or friend - and how severe the injury is. Established family roles may need to change. School, work, and leisure activities are invariably altered.
FEELINGS
The feelings family members experience during this crisis vary greatly, constantly change, occupy distinct time frames, but share one common feature - the entire spectrum of emotions are natural and normal.
Panic and fear can be overwhelming in the initial period after the injury. Some family members describe dizziness, shortness of breath, sleeping or eating disturbances, crying frequently, and/or feelings of numbness. Events and information may be difficult to recall and process during this period.
Anxiety and hope are feelings that will be continually linked during recovery, once the injured individual's medical status stabilizes. With each improvement, hope is fostered. The slow pace, complications, uncertainties of further progress fuel anxiety. An emotional roller coaster is unavoidably in place.
Denial is often present, and for some, represents a healthy defense system. Denial of what is truly happening protects an individual from the constant emotional pain they might otherwise be experiencing. This "reprieve" helps individuals gather their strength and perhaps provides energy to address more concrete tasks for their loved one and other family members. Denial can become problematic later on if unrealistic goals for recovery are set, despite information provided by the team, and if appropriate treatment and rehabilitation planning is interfered with.
Anger and guilt are frequently experienced, and often replace denial. Feelings of rage may be directed at the injured person for "allowing" the accident to occur. Other family members, hospital staff, manufacturers of automobiles or similar equipment they may associate with the injury, or God may be the recipient of the anger.
No matter how unreasonable, guilt similarly is felt. Family members, especially the parents of a young child or adolescent, believe that they should have somehow been able to prevent the injury. Loved ones are to be protected from physical harm. Guilt may later be associated with feelings of helplessness and inadequacy. There must be something more they could be doing to speed up the recovery process, to "fix" what is wrong.
Even when sleep patterns seem regular, fatigue is almost always felt. The stress and anxiety of the constant uncertainty, the physical and emotional demands of remaining involved at the hospital, at home, at work, are exhausting and take their toll. Loss of patience and irritability with those around you, usually those closest to you, may occur.
One of the most commonly expressed feelings throughout the recovery process is one of loss. Grieving occurs despite the survival of your loved one. These feelings may become more profound as physical, cognitive, and behavioral changes are more evident. Your loved one may be alive, may look "the same", but "is different". Sadness and grief are natural and often healthy reactions to this crisis, however family members may need help recognizing and understanding these feelings.
COPING
Of all the challenges you are facing, as described throughout this booklet, adjusting to the emotional impact of what has happened is the most crucial. You cannot help your loved one if you do not help and protect yourself. Use the strategies described below, and enlist the expertise of hospital professionals such as social workers and psychologists to assist you.
Acknowledge the feelings you are having, even if you think they are unreasonable. Share them with friends, family, and professionals. those around you are most likely feeling the same way. Talk with other families who have experienced a similar crisis; join support groups, if possible. Learn how to "let go" of "what was" in order to accept "what is". Be sensitive and honest with immediate family members, especially children, as the changes in the family will be apparent and confusing. Give family members permission to ask questions, provide realistic information. Record feelings along with information in your journal and refer to it when needed.
Maintain your physical health. Eat nutritiously, exercise if possible, safeguard against fatigue. The demands to be at the hospital may increase, as your family member becomes more alert. Learn to accept offers of help from family and friends. Allow others to take turns at bed- side. Respond to "is there anything I can do to help?" with a specific, but manageable task such as transport your child to school, mow the lawn, feed the cat. You cannot be everything to everyone.
Do not neglect the other members of the family and significant relationships. Sustaining a reliable support system is important for long-term coping. With the enlisted help of friends and relatives, resume some normal activities, try to maintain a family routine and remain connected to the "outside world". This is particularly important for young children in the family. Be aware that changes in roles and dependency patterns within the family are unavoidable during this crisis. Plan time for recreation. Use the time away from the hospital to renew your energy to continue.
THE BEGINNING
No one can pretend that life will go on as though an injury or accident has not happened. But we do know that it doesn't stop. The path that the brain injured survivor may now travel may be different from the one followed before the injury, but no less significant, no less dignified, and no less victorious.
This may be the end of our publication, but it actually represents the start of your journey. It is our hope that we have answered most of your questions, and given you the tools to ask more. We hope that you now possess the confidence and determination to become an active participant and can assist your loved one in locating pathways to reach his/her fullest potential. Finally, we hope that we have supported you and provided you with the strength and courage to continue your travels, with your loved one, along the uncertain, often complicated, but hopefully rewarding road to recovery.
ADL - Activities of Daily Living (dressing, bathing, etc.)
AFO - Ankle-foot orthosis: a short leg brace.
Ambulate - to walk.
Anosmia - Loss of the sense of smell.
Anoxia - A lack of oxygen. Brain cells need oxygen to exist. When blood flow to the brain is reduced or when oxygen in the blood is low, brain cells are damaged.
Anterograde Amnesia - Difficulty retaining information after an accident. Difficulty with new learning.
Anticonvulsant - Medication to decrease the possibility of seizures, such as Dilantin, Phenobarbital or Tegretol.
Aphasia - Difficulty expressing or understanding information in any form.
Expressive Aphasia - Difficulty expressing oneself even though one knows what to say.
Receptive Aphasia - Difficulty comprehending spoken language.
Global Aphasia - Combination of expressive and receptive aphasia.
Apraxia - Partial or complete inability to carry out a planned, purposeful sequence of movements, in the absence of paralysis, sensory changes or deficiencies in understanding.
Aspiration - A swallowing problem when food, liquid or secretions enter the lungs.
Assistive Device - Special or modified equipment which assists a disabled person, such as canes, special eating utensils, non-vocal communication devices, etc.
Ataxia - Interruption of smooth muscular movements, characterized by incoordination.
Attention Span - The length of time a person can concentrate upon a task or event.
Bed Mobility - Ability to move oneself on a mat or bed, as by rolling, sitting or lying down.
Bilateral - Both sides (of the body).
Biofeedback - A process in which information is recorded from the patient and then relayed back to that individual so he can change a particular state, such as muscle tone or position.
Brain Scan - An imaging technique in which a radioactive liquid is injected into the blood stream so that pictures of the brain can reveal tumors, blood clots, hemorrhages, or abnormal anatomy.
Catheter - A tube for draining urine; indwelling, inserted into the bladder (Foley) or external, over the penis (condom).
Cerebrospinal Fluid - The liquid which fills the ventricles of the brain and surrounds the brain and spinal cord.
Clonus - A sustained series of rhythmic jerks, usually seen in ankles or wrists, caused by the quick stretching of a muscle.
Closed brain injury - Trauma to the head that does not penetrate or fracture the skull, but damages the brain.
Cognition - Understanding and reasoning; the mental faculty or process by which knowledge is acquired; the mental activity that programs, regulates and verifies information.
Cognitive Retraining - Developing or relearning the processes involved in thinking.
Coma - A state of unconsciousness from which the patient cannot be aroused, even by powerful stimulation.
Comprehension - The ability to understand or draw meaning from what is seen (visual comprehension), heard (auditory comprehension), or touched (tactile comprehension).
Concrete Thinking - The ability to understand the similarities between situations, seeing each situation as different; language is interpreted literally.
Continence - Ability to control bowel and bladder functions.
Contracture - Loss of joint motion; stiffness
CT Scan/Computerized Tomography - A series of computerized X rays of the brain at various levels to reveal its structure. This procedure shows the more obvious changes such as a hemotoma.
Decubitus - Breakdown of the skin (commonly called a bed sore).
Dysarthria - Unclear, slurred speech resulting from weakness and/or incoordination of the muscles used to produce speech and sound. ECG/EKG -Monitoring heart rate and rhythm by positioning electrode pads on the patient's chest, which are connected to a monitor.
Electrical Stimulation - Direct application of mild electricity to a muscle or muscles to cause them to contract.
Emotional Lability - Involuntary, uncontrolled laughing or crying.
Extension - Usually means to straighten a joint, as in straightening your knee.
Fine Motor Activities - Complex activities involving the hand such as writing and manipulating small objects.
Flaccid - Lacking muscle tone; flabby.
Flexion - Usually means to bend a joint, as in bending your elbow.
Functional - Ability to use skills in useful activities in a reasonable amount of time.
Gait Training - Instruction in walking, with or without equipment; also called ambulation training.
Gastrostomy Tube (G-Tube) - A feeding tube passed directly into the stomach from a surgical opening in the abdomen.
Gross Motor Activities - Large movements of body parts, as those involved in rolling, sitting up and standing.
Halo - A metal ring used for patients with upper spinal cord injuries which is bolted into and surrounds the patient's head, allowing for proper alignment of the neck and spinal column. In order to prevent further injury to the spinal cord it is important that the patient with a broken spine remain still.
Hemianopsia - Loss of half the visual field in one or both eyes.
Hemiparesis - Lack of muscle control on one side of the body, such as right (R) face, right (R) leg (see Paresis).
Hypertonic - Abnormal increase in muscle tone, or tension.
Hypotonic - Abnormal decrease in muscle tone, or relaxation.
Independent - Ability to perform an activity consistently and safely, in a practical amount of time, without supervision or assistance.
Jejunostomy Tube (J-Tube) - A type of feeding tube surgically inserted into the small intestine.
Memory - The process of recalling or reproducing what has been learned and retained.
Motor Planning Problem - Difficulty starting, continuing and stopping movements when there is no actual muscle weakness or damage. May affect speech or movement of the arms and legs. Also referred to as Apraxia . (See Perseveration.)
MRI/Magnetic Resonance Imaging - A diagnostic procedure that uses magnetic fields to create pictures of the brain's soft tissue. MRI can provide a more detailed picture than the CT scan.
Nasogastric tube (N/G Tube) - A tube which is passed through the nostril and into the stomach to carry food directly to the stomach.
Non-Purposeful Movement - Movement of any part of the body which has no apparent purpose.
Nystagmus - Involuntary movement of the eyeball.
NPO - To receive "nothing by mouth."
Orientation - Accurate awareness of self, other people, time and place.
O.T. - Occupational Therapy.
Orthosis - Splint or brace used to support, align, and improve function of movable parts of the body. Paralysis - Inability to move a muscle or group of muscles voluntarily.
PA. - Physician Assistant.
Paresis - Lack of control of a muscle or group of muscles; partial or incomplete paralysis.
Perception- Ability to recognize and distinguish objects in the environment, including size, shape, color and distance.
Perceptual Motor - Interaction of vision with motor (muscular) activities such as eye-hand coordination, eating, picking up objects, etc. Perseveration -Uncontrolled, involuntary repetition of speech or activity (See Motor Planning).
Physiatrist - A medical doctor specializing in physical medicine and rehabilitation.
PRE - Progressive Resistance Exercise; a muscle strengthening program.
Premorbid - A term to describe the patient's condition before the injury.
Pressure Area - A sore or reddened area of skin caused by continued pressure, which could eventually develop into a decubitus, or bed sore.
Prosthesis - An artificial limb.
Prone - Lying face down.
Quadriparesis - Lack of control of all four limbs of the body resulting from an injury to the brain (See Paresis).
Range of Motion (ROM) - the range of movement available in a joint, measured by degrees.
Reality Orientation (R.O.) - Reviewing with the patient names of familiar persons, places and things. Reflex - An involuntary response to a stimulus, such as a knee jerk.
Rehabilitation - A system of organized treatment that enables an injured person to regain the highest possible degree of mental and physical ability.
Respirator - (see Ventilator)
Retrograde Amnesia - Lack of memory of things that happened just before a brain injury.
Random Movement - An action of moving without obvious reason or purpose.
Seizure - An uncontrolled discharge of nerve cells which may spread to other cells throughout the brain. The sudden attack is usually momentary, but may be accompanied by loss of bowel and bladder control, tremors, and/or aggressiveness.
Selective Attention - Ability to focus attention upon a specific thing or -task for a given amount of time.
Sensation - Information received to the brain through the senses of touch, sight, hearing, smell, and taste.
Sensory Stimulation - Arousing the brain through any of the senses.
Shunt - A surgically placed tube connected from the ventricles deposits fluid into the abdominal cavity, heart, or large veins of the neck.
Spasm - A sudden, abnormal, involuntary muscular contraction. (See Clonus).
Spasticity - A marked involuntary increase in muscle tone (tension) characterized by hyperactive reflex, resistance to passive movement, clonus, and shortening of the muscle.
Splint - A metal, plaster or plastic support used to position one or more joints properly to reduce muscle tension, increase ROM and/or allow greater use of the body part.
Supine - Lying on one's back.
Strabismus - Uncoordinated movement of the eyes, usually resulting in double vision.
Structure - (Used as a verb) To simplify a task, an activity, information, and the surroundings.
Synergy - Combined action of two or more muscles to form an abnormal pattern of movement. The person cannot move one without the other.
Supervised - The level at which a person is physically able to perform an activity but needs verbal instruction to complete it appropriately.
Tone - The tension in resting muscles and the amount of resistance that is felt when a muscle is moved.
Tracheostomy (Trach) - A surgical opening at the front of the throat providing access the trachea or windpipe.
Transfer - Refers to methods of getting to and from a wheelchair, bed, toilet, etc. using a stand-pivot movement or a sliding board for example.
Ventilator - Equipment that does the breathing for the unresponsive patient. The machinery serves to deliver air in the appropriate percentage of oxygen and at the appropriate rate.
Void - To urinate.
SAN DIEGO BRAIN INJURY FOUNDATION
PO Box 84601
San Diego, CA 92138-4601
(619) 294-6541
FAX: (619) 294-2911
AMVETS SERVICE OFFICE
VA Regional Office
11000 Wilshire Boulevard
Room 5200
Los Angeles, CA 90024
(310) 479-8649
Contact person: John Fisher, SSO
VA Regional Office
2022 Camino Del Rio North
Room 204
San Diego, CA 92108
(619) 680-4875
Contact person: W. Allen Ray, NSO
BRAIN INJURY ASSOCIATION OF CALIFORNIA
P.O. Box 160786
Sacramento, CA 95816
(916) 442-1710
(800) 457-2443 (CA only)
FAX: (916) 442-7305
COMMUNITY SERVICES SAN DIEGO COUNTY INFORMATION LINE:
Greater San Diego (619) 230-0997
North County:
Coastal (760) 740-0997
Inland (760) 740-0997
Other Areas (800) 227-0097
COUNTY MEDICAL SERVICES - CMS PROGRAM
Information (619) 492-4444
MEDICAID OFFICE
Department of Health Services
714 P street Room 1253
Sacramento, CA 95814
(916) 657-1425
Fax: (916) 657-1156
MEDI-CAL GENERAL INFORMATION
San Diego County (619) 514-6855
SOCIAL SECURITY ADMINISTRATION
(800) 772-1213
SOUTHERN CAREGIVER RESOURCE CENTER
Part of a statewide system of Resource Centers serving families and caregivers of brain-impaired adults.
3675 Ruffin Road, Suite 230
San Diego, CA 92123 (
619) 268-4432
(800) 827-1008
VICTIM WITNESS PROGRAM
Chula Vista (619) 691-4539
Downtown (619) 531-4041
El Cajon (619) 441-4538
WORKER'S COMPENSATION BOARD
(619) 525-4589
www.aphasia.org/
www.aphasiahope.org/index.htm
Aphasia facts and personal experiences of brain injury survivors with aphasia.
www.biausa.org
National Brain Injury Association.
http://members.aol.com/bigkate4/big.htm (Kate Vincent, a member and survivor with her own brain injury publication and web site)
