When you don't look "different": The impact of Acquired Brain Injury.
We often hear about TBI. Which stands for Traumatic Brain Injury. This happens to someone after a serious accident/injury to the brain.
A lot of people are not aware that ABI (Acquired Brain Injury) is the same, but instead of the brain injuries being brought on by an accident or head trauma, it is "acquired", usually by a invasive brain surgery, brain hemorrhage and other serious medical conditions.
TBI and ABI are Trauma to the brain, regardless of how you "got them".
Here is a great article on Acquired Brain Injury. It covers everything a Brain Injury can bring, but some people are affected in more areas than others! It can be discouraging to recognize yourself throughout everything mentioned to a certain degree. I know for me personally, some areas are obviously a big struggles for me, while others I can only recognize very little. It is a good read to learn about yourself and why you feel like a "changed person".
I have struggled to accept the "new me" in some of those areas. That is because these areas are what makes us feel like "us", and who we are. If I was always very organised before, never forgot where I left something, or never forgot an event, it is pretty difficult to accept all over sudden not being that way anymore, even if there are LOT of people out there who were never this way as a person! Its the change that is difficult to accept. Someone who has been forgetful since birth, or was never organized, doesn't feel "abnormal"... that has always been "their" normal. So I try to remember that.... it is not that I am all over sudden "abnormal"... it is just that things are different now. Its still hard to move on from that! Its a learning process and it takes time, patience, and acceptance!
That last part "A widely perceived myth is that a brain injury is simply a type of intellectual disability. People who acquire a brain injury usually retain their intellectual abilities but have difficulty controlling, coordinating and communicating their thoughts and actions'
This hit home hard for me. I have heard on several occasions people say to me "you sound smart to me, you write so well!" or "You don't sound like you have cognitive issues to me, you are very smart!"
Its very hard to explain how it feels like... It feels very misunderstood and alone.
But understanding all this is very helpful! And if others around you cant understand it, or simply don't want to take the efforts or time, at least YOU can, and you can stop feeling so helpless and "abnormal", but understand it, accept it, do your best, and be happy with yourself!! People who truly knew you, and who loves you, understands you. They will always be there to push you at your best, but also comfort you when you feel so small :)
Let's just accept it!
So, here it is.
IMPACT OF ACQUIRED BRAIN INJURY ON THE INDIVIDUAL
Cognition is the conscious process of the mind by which we are aware of thought and perception, including all aspects of perceiving, thinking and remembering. In general, cognition is knowledge – the way we learn and perceive the world around us.
The nature of cognitive problems will vary over time depending on what the person with the injury is doing and where they are. Some of them may not occur at all. These changes may become more obvious over time and can be very frustrating because they can affect the person’s ability to learn new things, to work and to be involved socially.
Lack of insight
This is probably the most difficult problem to deal with. People with a brain injury have great difficulty seeing and accepting changes to their thinking and behavior. It is therefore necessary to provide frequent, clear and simple explanations about why a problem is being treated or why the person is unable to do something. The person may deny the effects of the injury and have unreasonable expectations about what they are able to do. If the person continues to deny or to rationalize problems it is probably better to change the subject. It is not a good idea to try to argue or reason with the person as this will only make both of you upset and agitated. Eventually the person will be faced with the everyday consequences of these problems.
One of the most common cognitive deficits is poor memory. There may be problems in remembering people’s names or appointments, passing on messages or phone calls, or remembering details read in a book or newspaper. In therapy the person may forget what they are doing from one session to the next. Many are able to remember things that happened before the accident, but may have difficulty remembering things that happen from day-to-day. The person may have problems learning new things. Memory problems may resolve as the brain recovers but giving repeated practice of memory tasks will not necessarily bring about recovery. It may be more effective to develop compensatory strategies and thereby minimize the impact of the problem on everyday life.
A very common outcome is a tendency to lose concentration or be distracted easily from what they are doing. This is usually because they are having difficulty concentrating. The person may have a short concentration span, which means they might jump from one thing to the next.
The person with a brain injury may be slow to answer questions or to perform tasks and they may have difficulty keeping up in conversation. Their capacity to respond quickly in an emergency may also be lost. The person can be helped by allowing more time to respond and to complete tasks. An understanding employer may be willing to modify the work situation. It is also vital that we avoid letting the person get into situations where they may be at risk by virtue of their slowed responses. This is one reason why many people with a brain injury are not allowed to drive. There might also be a need for careful supervision in the home.
Poor planning and problem-solving
People with a brain injury may have difficulty solving problems and planning and organizing things they have to do. They may encounter trouble with open-ended decision-making and complex tasks need to be broken down into a step-by-step fashion.
Lack of initiative
In spite of all good intentions, someone with a brain injury may sit around at home all day long and watch TV. If the problem is severe they may need prompting just to have a shower and get dressed or to participate in a conversation.
People with a brain injury can be very inflexible in their thinking. They can’t always change their train of thought, so they may tend to repeat themselves or have trouble seeing other peoples’ points of view. They may not cope very well with sudden changes in routine.
People with a brain injury can be very impulsive because they may have lost the filtering system or control that makes them stop and think before jumping in. This can lead to a wide range of behavioral issues and problems with relationships and finances.
People with a brain injury tend to have a low tolerance for frustration and can lose their temper easily. If kept waiting for an appointment they may become agitated and walk out. They may become unreasonably suspicious and paranoid.
Socially inappropriate behavior
People with a brain injury may have difficulty judging how to behave in social situations. They may walk up to strangers and start telling them about their accident, they may be over familiar with therapists or they may make inappropriate sexual advances. This area can be incredibly difficult for families or partners. In more severe cases the person will often end up homeless or in the correctional system.
A broad range of social skills may be affected by an acquired brain injury including the ability to start or take turns in conversation, interpret and respond to social cues, show interest in others, use humor appropriately, shift between topics of conversation and regulate the volume and tone of voice. A person with brain injury often lose their listening skills, and may talk excessively. Accompanying memory problems may mean that they often repeat topics as well.
A tendency for the person with a brain injury to become very dependent on others. The person may not like being left alone, and constantly demand attention or affection.
Just as people with a brain injury have difficulty controlling their behaviour, they may also have difficulty in controlling their emotions. They may cry too much or too often or laugh at inappropriate times, or they may suffer rapid mood changes, crying one minute and laughing the next.
Depression in a person with brain injury is a very common emotional consequence that usually comes some time after the injury. Signs of depression include lack of motivation, loss of sexual drive, sleep disturbance and tearfulness.
Loss of taste and smell
A blow to the head can cause anosmia by injury to the olfactory nerve. This nerve sits between the frontal lobe and bony protrusions from the skull and is vulnerable to trauma. A blow to the head can also cause anosmia by damage to smell processing cells in the orbito-frontal or anterior temporal lobes or by mechanical damage to nasal structures. This loss of taste and smell often leads to either lack of appetite, or obesity as the person compensates with very salty or fatty foods.
Dizziness and balance
These are very common complaints after acquiring a brain injury caused by damage to the brain stem, blood pressure fluctuations from damage to areas controlling the heart and blood flow or vertigo from damage to the inner ear.
Epilepsy and seizures
These are chronic medical conditions produced by temporary changes in the electrical function of the brain, causing seizures which affect awareness, movement, or sensation. Medication will usually control these conditions well but some lives are devastated by frequent, uncontrollable seizures or associated disabilities.
Sometimes called adynamia, fatigue is a disorder of motivation that typically arises after injury to the frontal lobes, particularly the dorsolateral area. People with adynamia will experience loss of drive, indifference and placidity and may find themselves exhausted for days if they do not carefully manage their limited energy levels.
There are multiple sources of head and neck pain, both inside and outside the head. Headaches arising from a brain injury can be caused by displacement of intracranial structures, inflammation, decreased blood flow, increased muscle tone, inflammation of the thin layers of tissue coating the brain and increased intracranial pressure.
Vision and visual functioning is often adversely affected by brain injury. Some of the more common visual systems problems include double vision, field cuts, sector losses, rapid eye movement and near-sightedness.
This kind of pain persists beyond the expected healing time and continues despite appropriate physical improvement in the affected area of the body. The pain can emerge as headaches, neck and shoulder pain, lower back pain and/or pain in other body areas if trauma caused the brain injury. The pain may be so intense and bothersome that the person withdraws from work, family and social activities.
Differing degrees of paralysis can affect all parts of the body depending on which part of the brain has been injured. Effects can include poor coordination, difficulty walking, visual difficulties or weakness on one side of the body.
Hearing problems can occur for a number of reasons, both mechanical and neurological, particularly when the inner ear and/or temporal lobes have been damaged. Tinnitus is experienced as noises which are commonly like a buzzing, hissing or ringing in the ears. Meniere’s syndrome is caused by excessive pressure in the chambers of the inner ear. Nerve filled membranes stretch which can cause hearing loss, ringing, vertigo, imbalance and a pressure sensation in the ear.
Auditory agnosia is impaired recognition of nonverbal sounds and noises but intact language function. In some cases trauma to the inner ear can cause the person to be extremely sensitive to certain noises or pitches and may not be able to tolerate many environments we take for granted.
So far only the more common issues have been looked at. However there are many disorders that are less common but no less debilitating. For example, Heterotopic Ossification is a secondary condition in which there is abnormal bone growth in selected joints, most commonly in the hips, shoulders, knees and elbows, usually occurring within the first nine months after injury. Chronic neuroendocrine difficulties are occurring in women some years post injury, with weight gain, thyroid disorders, changes in hair and skin texture and perceived body temperature changes. Other people struggle with typographic dislocation, where they cannot remember how to navigate even well known environments, such as their own home or suburb.
Myths and Misconceptions
A widely perceived myth is that a brain injury is simply a type of intellectual disability. People who acquire a brain injury usually retain their intellectual abilities but have difficulty controlling, coordinating and communicating their thoughts and actions.
Acquired brain injury is often called the invisible disability. It is easy to see why an acquired brain injury can be such a devastating disability. As there are frequently no outward physical signs of a disability. As a result there are very few supports available for people who acquire a brain injury, and often the few supports available may be withdrawn as the disability is not recognized.