Read an Excerpt
CHAPTER 1
Tips For TBI Survivors
1. REALIZE YOU ARE NOT ALONE because in America there are at least 2.5 million new cases of TBI yearly.
2. Let your fears motivate you to NEVER GIVE UP ... face what you fear, one obstacle at a time.
3. DENIAL can both hurt and help you; however, you must learn to accept your body's recovery pace.
4. SMILE at those who think they understand TBI while encouraging you to accept less than you desire from life.
5. ASSUME NOTHING – the disabilities of each TBI survivor are unique, yet similarities do exist. You will need to discover for yourself if you recall basic skills, such as matching shoes and clothing or reading and writing from left to right.
6. KNOW THE DIFFERENCE BETWEEN LOW IQ AND RETROGRADE AMNESIA - Not knowing basic things doesn't indicate low IQ ... it may indicate retrograde amnesia, or long-term memory loss.
7. DEVISE UNIQUE WAYS TO RELEARN FORGOTTEN SKILLS For example, you could sing rap lyrics to improve slow speech patterns.
8. SEPARATE YOUR WARDROBE INTO OUTFITS THAT YOU CAN SEE - Things in the back of the closet may be forgotten. For the TBI survivor, if you can't see it, it may not exist!
9. KEEP LISTS, USE POST-ITS ... short term memory loss is common after a TBI ... it's OK to write on your arm because anterograde amnesia can make you crazy, especially when you can't locate the keys you just tossed somewhere.
10. WRITE DOWN EVERYTHING ... to alleviate future frustrations, record information you want to remember or are scared you might forget.
11. STAY ORGANIZED – keep things in one place and visible if possible so you won't forget where they are.
12. TRY NOT TO ARGUE WITH PEOPLE. An argument may or may not be socially inappropriate behavior, so use the ambiguous response, "You may be right!"
13. If you know you are prone to socially inappropriate language, PRACTICE TALKING TO STRANGERS who won't get upset; you might go out of town to practice skills that once were basic, and avoid embarrassing friends and family.
14. USE BIG WORDS for a dual purpose: "azure" may be easier to recall than "blue," and people think you are still smart if you raise your vocabulary, or utilize proper diction when conversing.
15. USE "PARDON ME?" INSTEAD OF "WHAT?" You may find people talk too fast at first, and you need to ask them to repeat things. Receptive and expressive processing disorders are common following head injury. If you say "What? What?" people think you aren't listening ... if you say "Pardon?" they assume intelligence.
16. THE OLD YOU is someone people say they miss, when there is only one you; simply nod your head and tell them that "trauma changes a person." You can also blame any bad habits on the "old you."
17. MEMORIZE NEW DATA BY SETTING THINGS TO MUSIC OR RHYME.
("Amendment One is easy to teach ... freedom of Religion and Press and Speech!")
18. RELY ON COMPUTERS ... they are your friends and don't criticize. Devices like iPhones and iPads have apps designed to help you remember things.
19. REACH OUT TO FRIENDS AND TELL THEM IF YOU NEED HELP ... they don't read minds.
20. WEAR BLACK ... then everything matches!!
21. DON'T INVEST IN EXPENSIVE CLOTHES OR SUNGLASSES ... you may forget where you put them; don't get upset over losing "stuff." Remember – most things can be replaced.
22. LEARN THE FINE ART OF GROVELING: Example for students: teachers like you better if you make eye contact and sit up front.
23. To improve RETROGRADE AMNESIA (long term memory loss), watch historical films to help recall history- movies reinforce memory. Purchase a globe to remind yourself of where things happen(ed). Watch your own home movies, too, to recall how you felt about family and friends – explore your own personality.
24. Expect problems each day, and make a list of how many repetitions it takes for you to relearn/regain a small skill. By RECORDING REPETITIONS, you'll see yourself improve.
25. When cooking or using appliances (as heating pads), make sure electronic devices are turned off before leaving the room – AUTOMATIC SHUT-OFFS can help greatly as well!
26. Place CLOCKS IN EVERY ROOM in the house, to help you stay on schedule.
27. Use stopwatches or timers when cooking to prevent memory difficulties in the kitchen ... TIMERS ATTACHED TO CORDS that you can wear around your neck are the most effective. If you leave the kitchen, the alarm will still sound and notify you to return to your cooking.
28. Keep regularly used OBJECTS (keys, glasses) IN ONE frequently visited and visible AREA.
29. Look yourself over in a full-length MIRROR prior to leaving the house to make sure your clothing and accessories match; this also helps you recall things to bring home!
30. READ THE LAWS REGARDING DISABILITY (IDEA for school / Individuals with Disabilities Education Act) ... and the ADA (Americans with Disabilities Act) for work. The law usually favors the handicapped. (See #31)
31. WHEN YOU ARE ABLE, ADVOCATE FOR YOURSELF! Students should take copies of medical records, IEP, etc. to each teacher every year; don't rely on guidance too much. If you are older and working, provide employers with a letter stating you are disabled (and a list of TBI-related symptoms); that's all you owe an employer – you are probably protected from losing a job you can accomplish by the Americans with Disabilities Act.
32. USE SOCIAL MEDIA for support (imlostinmymind.com, that's me!).
33. PARTNER UP: Ask a parent or caretaker to read along with you; ask the schools for double books; then you can discuss data you may forget as you read. At work, ally with a mentor.
34. YOU CAN STILL WORK at something meaningful even during recovery. Volunteer at an animal shelter, wash cars, or answer phones at a help desk!
35. FRIENDS IN LOW PLACES may be better than friends in high places.
36. DON'T GIVE IN TO DESPAIR; you are a role model for other survivors, and things do get better!
37. FIND A GOOD PSYCHIATRIST or other counselor as soon as possible, the best you can afford.
38. MAKE SOMEONE ELSE HAPPY each day ... especially on days you cannot be happy yourself.
39. RESCUE A PET (I prefer doggie love, but cats may work as well).
40. Tell hairdressers, doctors, etc., NOT TO CHARGE you when (not if) you forget an appointment because you have a traumatic brain injury!
41. DON'T GRIEVE over friends who forget you; look around for the wonderful new friends who will embrace you.
42. Give yourself LIMITED TIME TO GRIEVE for lost friends or abilities. When that time is over, put the negative feelings away. (A short "pity party" is OK.)
43. KEEP A JOURNAL of anything you find useful, from a "no chop" recipe if your hands tremble, to a list of occupations you can one day imagine yourself performing.
44. LOVE IS POSSIBLE even if you don't have it yet – everyone has idiosyncrasies.
45. DO NOT FEEL GUILTY ABOUT YOUR TBI; guilt is the only non-productive emotion ("regret" is OK).
46. Drive a car with MULTIPLE AIRBAGS – when you can drive – and LANDMARK LOCATIONS to prevent getting lost (or use a GPS).
47. Doctors are not omniscient; they cannot know how hard you will work. ONLY YOU CAN KNOW how far you're willing to go to regain what you've lost.
48. If possible, FIND AN ATTORNEY to handle insurance issues in an affordable way.
49. Listen to yourself on TAPE, and watch yourself on VIDEO – even if it's scary and depressing. You have to know what you're up against. (Use this to support you on tip #50.)
50. Compare your writing, your voice, etc., from month to month – DON'T RELY ON OTHERS to honestly note your improvements.
51. VISIT FORMER CARETAKERS, from nurses to therapists; show them what they meant to your recovery. They may even discover improvements you have missed or forgotten.
52. PICK UP THAT PHONE! Some people are scared to call you and they really do want to stay in touch and help. If you have slow or slurred speech, you can always text people you want to contact.
53. SHARE any "tip" that you find helpful; it may be the one thing another survivor needs to know (I use 3 alarm clocks to awaken every morning).
54. READ – if you can only follow a brief poem, read that; expand to short stories with two characters and advance over time to longer works.
55. HELP OTHER VICTIMS – write local colleges or universities to demand classes to train teachers of those with TBI; correspond with other survivors; join a support group if you enjoy this; write your Congressman for better legislation regarding TBI survivors.
56. One visit to an attorney specializing in EMPLOYMENT ISSUES may be worth the fee!
57. EXPECT LITTLE FAILURES because you want to speed up the healing process, which may have to progress slowly.
58. Try to remember that YOU'RE NOT THE ONLY PERSON with health issues; find your lost empathy for others. Volunteer to help someone else with disabilities; a few hours a week or month will pay back in huge dividends to your self-esteem.
59. FATIGUE IS NORMAL. Rest when you can! As you sleep, your brain continues to heal.
60. LAUGH as much as possible and LEARN SOMETHING NEW EVERY DAY! Acquiring new knowledge helps the brain form new neural connections.
Tips for Friends and Caregivers
61. TELL THE TRUTH- HONESTY helps the healing process. If friends exaggerate and say, "You look super," the victim of TBI knows the truth. Rather, say, "You did better today than yesterday ... but we'll get there together!"
62. GIVE HOPE – friends can express optimism or pessimism. Those who truly help will, in small ways, show they expect the victim of TBI to get fully well.
NO ONE CAN DO ANYTHING THEY DON'T BELIEVE THEY CAN DO!
63. Help THE VICTIM OF TBI FIGURE OUT WHAT THEY REMEMBER AND WHAT THEY DO NOT.
64. FILL IN LOSTS MEMORIES with photographs, videos, and conversations. You might have some photos on your Facebook timeline that may help jog memory.
65. STAY POSITIVE AND OPTIMISTIC; pessimism is a luxury no one can afford.
66. USE SIMILIES AND METAPHORS IN YOUR SPEECH to help TBI survivors transit from a literal world to the figurative; "I'm angry as a football coach," is better than "I'm mad."
67. EXPLAIN words with multiple meanings: Note the difference between a "hot" day and a "hot" girl.
68. PREPARE FOR MULTIPLE REPETITIONS because new knowledge is more difficult for TBI survivors to retain than old knowledge.
69. Take the time to SHARE YOUR UNIQUE GIFTS, interests, and hobbies. Take your loved one with TBI to your baseball game, a movie ... new survivors can't perform well yet, and need to be entertained and to enjoy life.
70. TIME is key; take the time to allow survivors to FEEL NEEDED ... actively do charitable things for others.
71. DESPAIR IS NOT AN OPTION – sing, laugh, and move forward hour by hour.
72. Gather your own support network as CARETAKERS NEED THEIR OWN CARETAKERS; ask for help when life changes instantaneously.
73. Keep a LIST BY THE TELEPHONE of current events (sports events, movie reviews) to give survivors topics to talk about when they are in a mental flood of confusion.
74. Plan "SAFE OUTINGS" with trustworthy drivers; make sure they (and you) have a rider on their automobile insurance with protection from the under and/or uninsured motorist.
75. Set up FUTURE EVENTS that survivors can plan for – a short cruise, for instance, involves no driving ...and the survivors are less likely to get lost in a boat on the ocean.
76. Set SHORT-TERM goals – survivors can learn to jump a rope, read and discuss a poem, make a sandwich; long- term goals will follow but are less important immediately following a TBI.
77. PREPARE FOR DIFFICULT QUESTIONS, and answer honestly if asked, "Do people expect sex on a first date? Do I look OK?"
78. Try to ASSESS THE MENTAL AGE level of the survivor; the recovery period may feel like (and actually be) a delayed adolescence.
79. Confront inevitable depression; FIND A THERAPIST/PSYCHIATRIST who can offer both counseling and medication to caretaker as well as survivor.
80. READ UP ON PTSD (post traumatic stress disorder) so you can confront it at need.
81. Play games like SCRABBLE to enhance spelling skills, or JIGSAW PUZZLES to assist with occupational therapy.
82. Help devise strategies for specific problems; for example, use duct tape to make the OFF position quite easy to find on the eyes of stovetops.
83. If memory issues complicate daily life, have MORE THAN ONE COPY OF IMPORTANT ITEMS or documents – spare house and car keys, duplicate drivers' licenses, and so on.
84. USE THE INTERNET to locate information on TBI, from survivor memoirs to legal changes regarding disability law.
85. SOFTWARE can be a recovery miracle: programs to assist with memory, aphasia, and other problems are well worth the investment.
86. Make sure you are not the sole (and weary) caretaker; others have unique skill sets to offer one recovering from TBI, and social skills may call for a VARIETY OF COMPANIONS.
87. Help the survivor discover what hobbies are still worthwhile and possible; if, for instance, skiing is "out," REPLACE THIS HOBBY with interesting options (photography, writing).
88. Be your loved one's BEST FRIEND, and not his/her WORST ENEMY – allow the TBI survivor to do whatever she/he can do without aid. Independence needs practice and not enabling.
89. Consider that LEARNING (memorizing, taking tests, reading, writing) is the best COGNITIVE THERAPY for those with TBI; encourage continuing education at any age level.
90. Keep a LIST OF "POSSIBLE FUTURES" you observe for your TBI survivor (such as a jury clerk, A non-profit coordinator, A teacher?).
91. Keep aiming higher, and DON'T SKIP RECOVERY STEPS; the world is changing for the better regarding TBI survivors, and a handicap can be an advantage in the working world.
Tips for Teachers of TBI Survivors (This section reflects Kelly's belief that going to school was her best cognitive therapy.)
92. Make it a priority to FOLLOW a TBI survivor's IEP – Individual Education Program – at all times. Deviating from this list of modifications will send the student into an immediate FLOOD, or state of panic.
93. Realize that THE STUDENT WITH A RECENT TBI IS HEALING; the person you see will be different next month and possibly tomorrow. Coleridge calls this "a willing suspension of disbelief."
94 .MAKE NO ASSUMPTIONS; can this survivor recall the multiplication tables? Read/write from left to right? Explore and set immediate priorities.
95. NEVER CONDESCEND, for this wounded student may be smarter than you, but unable to speak coherently for a time. PRACTICE PATIENCE!
96. Allow LEEWAY FOR THE FAMILY – give home phone numbers/emails of teachers and counselors, and possibly self- selection of teachers.
97. DARE TO SET A PRECEDENT (can physical therapy count as physical education in your school district?).
98. KEEP A SENSE OF HUMOR – for instance if the TBI survivor uses socially inappropriate language – most likely a reminder given with a smile will work best.
99. Use teaching modifications, such as these:
• TRIGGERS to assist with recall: "D" may help the student remember "Dante."
• WORD BANKS for testing (as a list of all states when the answer is "North Carolina").
• NOTETAKERS and ORAL TESTING as needed.
• MNEMONIC STRATEGIES to aid in recall.
• EXTENDED TIME for assignments; give all assignments IN WRITING.
• FREQUENT REST BREAKS; fatigue is a symptom of TBI.
100. NEVER POSTPONE A TEST! Your student may have been up all night memorizing work that will fade in a few hours; generally, the memory capacity of the student with TBI improves over time.
101. DEMAND EDUCATION concerning how to best instruct those with TBI; online courses are available for continuing education, and the BIAA (Brain Injury Association of America) can help. Have you heard of Child Find? Are you prepared to teach diagnostically and recognize symptoms of TBI? BE READY! The TBI population is growing into the millions.
(Continues…)
Excerpted from "101 Tips For Recovering From Traumatic Brain Injury"
by .
Copyright © 2015 Kelly Bouldin Darmofal.
Excerpted by permission of Loving Healing Press, Inc..
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
