Brain Injury Information

Brain Injury Basics

Traumatic Brain Injury is called the 'Silent Epidemic" because the un-informed public is being ravaged by its devastating repercussions. According to the National Center for Health Statistics the total number of injuries to the head (of all types) in the United States is estimated to be in excess of 8 million per year. Put another way, every four seconds someone in the United States may suffer a degree of brain damage. Most of those who are subjected to head injuries will not experience life-changing consequences because their injuries are not "traumatic." Yet according to the National Brain Injury Association, every 6 minutes one of the 8 million will become permanently disabled from a brain injury that is truly traumatic. Before the age of 65, two out of every three Americans (66%) will have suffered a form of brain injury ranging from mild to severe. According to State records each year in Colorado 3500 people are disabled from a brain injury and that rate of injury has been consistent for more than 15 years.

Medicine has made great strides in the application of emergency medical treatment, and has been able to save many people from what would have been certain death in the past. It is estimated that only 20% of those who sustained a severe brain injury in 1970 survived, at the turn of the century, that figure has risen to 60%. The increased survival rate can be attributed to incredible advancements in the field of trauma medicine. Unfortunately, knowledge of successful rehabilitation interventions has not kept pace with the ability of medicine to save people who have sustained an injury to the brain.

What happens when someone is brain injured?
Typically, no physical evidence is immediately noticeable when people are brain injured. It is an invisible disability. Yet TBI will cause some survivors to be "less human" more so than will other acquired disabilities because it paints its victims with a mysterious otherness. The Silent Epidemic, as its name implies, finds most people incognizant of its impact. Once severely afflicted with life out of control, people may never again enjoy personal satisfaction, and their self-esteem may only be a memory of the past, if they can remember at all. Surprisingly, the life-changing consequences of brain injury are met with less sympathy, empathy, or understanding than those of most other disabilities.

Every Brain Injury is unique.
Although you want to pay attention to what you hear about brain injury, you will have to "translate" it into you're, and your family's, particular situation. Your experience, or your family member's experience, may be different from what you have heard about traumatic brain injuries. No two brains are alike and no two brain injuries are alike. Each person who sustains a brain injury experiences a particular set of problems. These problems can impact any system in the body. There is no magic cure for these problems; brain injury can bring about profound changes. A brain injury can cause a wide variety of deficits,

Degrees of brain injury

Mild
A mild brain injury (also called mild head injury, minor brain injury or post-concussion syndrome) is an injury to the brain caused by a blow to the head or whiplash with Iess than twenty minutes of unconsciousness or no loss of consciousness at all. Usually a direct blow or whiplash does not cause serious problems. However, in some cases a mild brain injury has occurred. This type of injury is in a category separate from moderate or severe brain injury. Mild brain injury is not a milder version of a severe brain injury. Because medical tests such as CT scans and MRls are frequently not sensitive enough and mild brain injuries appear normal, individuals with such injuries may go undiagnosed for some time.

If your friend has a mild brain injury, it is expected he or she will recover with no residual effects. Yet any injury to the brain is permanent and significant. Some people with minor brain injuries have to live all or a part of their life with residual symptoms such as: depression, personality changes, fatigue, insomnia, hyper-sensitivity, dizziness, concentration difficulties, or memory dysfunction. It is hard for these survivors to think of any brain injury as "minor". Commonly, as a result of even mild impairments in mental functioning, people feel incompetent, guilty, and frustrated.

Moderate
If your employee has suffered a moderate brain injury, they are most likely puzzled about the changes in their personality and functional ability. Interpersonal difficulties, and imprecise medical diagnosis, amplify stress, fear, and anxiety. TTl works with employers and vocational rehabilitation counselors to help clients find employment that is consistent with their overall abilities, vocational limitations, physical restrictions, general temperament, interests, aptitude, social skills, education, general qualifications, and other relevant factors. TTl also works to support academic success.

Severe
If your child suffers a severe TBI, the negative impact on your family's dynamics and finances can be enormous. Families often report they wish their survivor were "normal". Not being normal is the mysterious otherness that vexes survivors who are unaware of being "off their mark." Moreover, the family may experience most of the life changing consequences when dealing with a severe injury. TTl counselors recognizing that families are usually important in clients' lives, strive to enlist family involvement as a positive resource when appropriate, and connect them with available resources.

When you improve after a moderate or severe brain injury you do not "progress" to a mild brain injury classification. You still have a moderate or severe brain injury even when you are making a good recovery. People who are "high functioning" after a moderate or severe injury have a different type of injury than those with a mild brain injury. Whether you have a mild, moderate, or severe injury is determined not by your functional level, but by the severity at the time of the injury.

Help Yourself

If you are having trouble remembering and staying organized since your accident, this information may be helpful.

After a TBI it is normal to feel upset or fearful. This can be a very stressful time. There are more details to attend to than ever - doctor appointments, insurance papers, possible loss of income, transportation problems. Give yourself permission to slow down. Don't try to do or remember everything you did before. Problems with remembering are often related to being distracted by discomfort or pain, the noise and confusion of a household or workplace, and feeling overwhelmed.

Suggestions to help you stay organized and remember important information:

• Use a daily reminder type schedule book, write down all appointments, and list all important phone numbers.
• Schedule a block of time to accomplish certain tasks, and give yourself more time than you needed before your brain injury. If the phone rings frequently, consider an answering machine so you are not distracted during your scheduled work time.
• Use sticky note pads to write reminders on. Put them near the phone, on the door or car dashboard.
• Make an effort to remember. If you tend to forget what you have left a room to get, make a mental note. Say to yourself "I am going to get ___." Visualize what you need. Do not allow yourself to be distracted by another task.
• Plan ahead. Review appointments and what needs to be done for the next day. Have clothes, lunches, and etc. ready the night before.
• Keep keys, wallet or purse, etc. in their own designated place.
• Make a list for everything that has to be done, and for every grocery item you have to get.
• If sorting mail is a problem, throw junk mail into the trash, bills into one colored folder, insurance papers into another, etc. Folders with pockets on each side are great for sorting TO DO and DONE.
• If you are not sure you understood what someone said, check to be sure. Say, "It sounds like you are saying ___" or "What you seem to be telling me is ___". Even when you are sure you understand someone, it is very professional to use these rephrasing tools.
• Allow yourself plenty of time to organize, think about and recall information. Say, "Let me think about this for a minute (or an hour, a day, a week, etc.) and I'll get back to you."

There are 4 core principles to keep in mind as you advocate for yourself and your family:

1. Take Care of Yourself Physically and Emotionally
   If you are going to succeed in your new job as self advocate, you must first take care of yourself.
   
   Physical Health
   If you do not take care of yourself you will not be able to do this job. If you are a family member, it doesn't help to be a martyr. Take care of any medical needs as they arise. Allow yourself to get adequate sleep and to eat nutritiously. Get some exercise. Exercise will help you feel more energetic, will give you an emotional boost, and will help keep you healthy. It is not a luxury, it is part of your job!
   
   Emotional Health
   You have the right to feel overwhelmed, sad, angry, and stressed after a brain injury. However, you also have the right to take the time to do something to feel better. Taking care of your emotional health will help you be a better self advocate. There are several things you can do. Allow yourself time during the week for activities that you find enjoyable and stress relieving. Again, this is not a luxury! Dig in the garden, spend time with a friend, real a novel, take a walk. Find what works best for you. If you find that your emotional symptoms are persistent, it may be a good idea to seek professional help. A mental health therapist can help you assess what is going on and develop a plan of treatment. Your emotional health is important not only because you need the energy to complete the job, but because you need to approach self advocacy in an emotional style which will not turn people off. If you are angry and hurting, you will come across as aggressive rather than assertive. There is no faster way to get a door shut in your face than by "acting" aggressive.
   
   
2. Gather Information - Knowledge Empowers You
   Knowledge empowers. It allows you to know what you need. It allows you to communicate efficiently. It allows you to negotiate for your cause, to let the person on the other end of the phone know that this is an important call and it deserves attention. Information can also be overwhelming, when you have so much going on in your life, so much new information to digest. Be systematic in gathering information. Develop a system for keeping track of information. Ideas for such systems will be discussed in the next chapter. And take your time. If you are getting information from someone over the phone or in a meeting, don't allow yourself to be rushed even if the other person seems to be in a hurry. Your time is important too. If you don't take the time to get the information correctly, the conversation was not useful to either of you.
   
3. Document, Document, Document
   Documenting your activities allows you to substantiate your position. (For example, "According to my notes from our last meeting, you said that my re-evaluation would begin in May"). It also makes people, feel more accountable. When you pullout your pen and paper, or turn on your tape recorder, you will find that people will sit up and pay attention. Your documentation makes the people around you feel more accountable for what they say. You can document by taking notes, by bringing a friend to take notes for you, or by using a tape recorder. Sony® makes a digital, PC Compatible, 11 hour+ recorder that works with "voice to print" software. It is model # ICD-SX25 and it features "maximum accuracy dictation" using Dragon Naturally Speaking® Voice to Print Software. You talk into your Sony® digital voice recorder, plug it into your computer equipped with Dragon Naturally Speaking®, and it "types" what you said into a word document.
   
   The following points can be helpful when documenting meetings or phone calls.
   
   At the beginning of an interaction,note the names of all the people attending, the date, the place, the purpose and the time of the meeting.
   
   Remember that you have a right to document information. . Don't be timid about asking someone to spell their name, or to repeat a statement so that you can document it.
   
   Keep track of your documentation in a system that makes sense to you. If you use a tape recorder, you may want to color code your tapes - using a white label for legal meetings, blue for doctor appointments, etc. If you use notes, you may want to have a file cabinet with color coded files. Or perhaps a large "Day Timer" type calendar/organizer that can be carried with you everywhere you go may meet your individual needs. Find a system that works for you!
   
   Write letters to follow up your interactions. A letter serves as a reminder and as documentation of your interaction.
   
4. Assertively Communicate and Negotiate
   Most of the work of self advocacy involves communication. Phone calls, meetings, and written communication are the activities you will engage in the most. The people you are communicating with are often people who have too much work to do in too little time. Your life or the life of your family member is not their priority. You need to make it so.
   
   Specific suggestions for good communication include:
   
   Be Prepared. Have essential information written down before hand. You may want to develop a fact sheet about yourself or your family member, including date of birth, social security number, date of injury, current abilities and needs, chronological timeline listing past treatment, etc. Write down questions ahead of time.
   
   Clearly state who you are, your reason for calling and ask if you are talking to the right person. When you get the right person, write down the person's name, number and title.
   
   Be empathetic. Empathy means seeing things from the other person's perspective, putting yourself in the other person's place. You want people to be empathetic to your situation. However, the fastest way for others to become empathetic towards you is for you to have empathy towards them. This can be difficult when your needs are so great. However, it will help you communicate and will increase your influence. The more you understand the agency and the people that you are dealing with, the easier it is to become empathetic. What is the mission of the agency, what is the role of the person you are dealing with? See him or her as a person, and chances are he or she will see you more as a person ? rather than a case or a number.
   
   Build relationships. Knowing people does help. It also helps when someone sees you as a person, not just as "another client".
   
   Be helpful back to someone who has provided services or information to you. Send the person a thank you note, or a copy of an interesting article, or connect the person with other contacts that have been helpful to you.
   
   Clarify and review. Do not end the interaction without reviewing what has transpired, who has agreed to do what, and what will happen next. Be sure to write this down. It can be helpful for the other person to know that you are documenting the conversation. It makes the person feel accountable for his or her statements. You have the right to ask for clarification, or to ask the person to explain technical terms, or to ask for the correct spelling of names, etc.
   
   Be Assertive! There are 3 basic styles of interaction. You can be Aggressive, Passive or Assertive. Most of us use all 3 styles of communication at one time or another. We may be more aggressive in some situations or with some people, and more passive or assertive in other situations. However, you can develop a more assertive style of communication.
   
The Assertive Style:

The assertive person attacks problems rather than people. The person may be angry or upset, but the anger is up front and is appropriate, and is usually directed toward the problem, not at a person. The assertive person stands up for his/her rights, but without stepping on the rights of others.

Example: "Doctor, I have some questions about my medication that I need to discuss with you. Would you like to discuss them at the beginning of our appointment or at the end?"
Being assertive is not always easy. It is especially hard when you are frustrated, when your self esteem is low, and when you feel that life is unfair. It involves practice, and there will be times when you will blow your cool, or times when you find yourself intimidated by "The Professional". Learn from these experiences and then move on. If you find assertiveness particularly difficult and would like more intensive training, there are a number of Assertiveness Training courses offered through community colleges, etc. There are also a number of assertiveness training books available.

References:

1. Apolloni, T. (1984). Self Advocacy: How To Be A Winner. California Institute on Human Services, Sonoma State University, Rohnert Park, CO. Paper presented through the National Information Center for Handicapped Children and Youth, Box 1492, Washington, D.C., 20013.
   
2. Colorado Mental Health Association, (undated). Effective Advocacy Techniques. Unpublished handout.

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Home Safety

A person who has sustained a brain injury often reports that they need to re-learn everything and often looses perspective and fails to see the danger that can lie in seemly inconsequential tasks or situations. Often, the individual may be so focused on the mundane aspects of daily life, like balance, walking, speaking, or coordination that he/she fails to grasp the importance of something like leaving electrical appliances run unattended. Provide him/her with all the common sense, and logic, you possess, and keep on providing them with those. The learning, or more accurately the re-learning curve can be very slow for a person with a brain injury. Encourage him/her to model your behavior. Talk of doing it, and speak the logic behind the action out loud: "I am moving outside the room so I will turn the blender off to prevent an accident".

• It may seem ridiculous and so obvious to you, the uninjured, however, during the early stages of rehabilitation, precious little is "obvious" to the survivor. One more caution to you the caregiver, family member, or friend, try to remember that the survivor may be acutely aware that he/she has changed dramatically. If he/she is he/she may deny that there has been any change from his/her previous condition. Show him/her respect and patience, there is no one who wants normalcy more than the survivor (weather he/she knows it or not).
• The purpose of the following information is to help prevent unnecessary second injuries. The individual who has sustained a brain injury is at greater risk for a second injury because of his/her slower reaction time, compromised awareness of potential dangers, and diminished problem solving capacity.
• Electrical Cords should be run along baseboards or behind furniture. They should not run under rugs of have furniture placed on the cord. Extension cords should not be used unless absolutely necessary and should be out of the way to prevent tripping over them.
• Emergency phone numbers should be posted on or near the phone. The numbers should be large enough for the survivor to read. Phones should be within easy reach for the survivor.
• Bath/Shower Rooms should have safe floor mats to avoid slipping on the floor, or tripping on the mat itself. Tubs and showers should have rubber, non-slip mats on the bottom. Consider installing safety/grab rails, on the walls above the tub and/or inside the shower. This will give a person something to hang on to in the event of slipping or losing his/her balance. Balance, or more accurately loss of balance, is one of the more common consequences of brain injury.
• Smoke alarms are a necessity, doubly so if the survivor is a smoker. Short-term memory impairment is one of the common manifestations of the injury. The survivor may not remember that the cigarette is lit.
• Kitchen activities may require close supervision. Short-term memory is often affected. A meal may be started on the stove and he/she moves on to something else with no memory of the unfinished task.
• Space heaters, wood stoves and kerosene heaters require extra care and attention. Be sure they are away from all combustibles. Insure adequate ventilation. If heating the house with these devices was previously the responsibility of the survivor, help them or have a neighbor help them.
• Lawn mowers, trimmers, snowblowers and Bar-B-Q's require careful supervision and should not be used until a competent, non-brain injured individual assesses for safety capabilities of both tool and user. An occupational therapist may be able to help you with this task.
  

Home Care Center for Living Independently
They conduct home safety assessments, then try to eliminate unsafe living conditions for seniors (anyone over the age of 60) by making minor repairs or safety-related improvements such as:

• TUB OR SHOUWER STALL GRAB RAILS
• HALL, ROOM OR STAIR STEP RAILINGS
• SMOKE DETECTORS
• SHOWER BENCHES
• CORDLESS PHONES
• HAND-HELD SHOWER FIXTURES
• NON-SLIP BATH TUB MATS
• AND MUCH MORE
  
  These services may be provided, at no cost, to eligible seniors and some survivors. This Home Injury Control Program is designed to serve individuals with the greatest social and economic needs. If you want to refer someone, need a presentation, or need any more information please contact:

Horizon Home Care
2170 South Parker Road, Suite 205
Denver, CO 80231
Ph#: 303-695-1460
Fax: 303-695-1464

To find published information on a whole range of topics surrounding brain injuries go to the RESOURCES section of this web site.

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Other Pieces to the Puzzle

• www.anausa.org
• www.biausa.org
• www.biacolorado.org
• www.braintrauma.org
• www.caregiver.org
• www.headinjury.com
• www.naric.com
• www.neuro.pmr.vcu.edu
• www.neuroskills.com
• www.tbi.org
• www.tbirecovery.org