Understanding Brain Injury - Brain Injury Alliance Of Iowa

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Page 1 of 64 mc1298-01 Understanding Brain Injury A Guide for the FamilyUnderstanding Brain InjuryA Guide for the Family1

Page 2 of 64 mc1298-01 Understanding Brain Injury A Guide for the Family

Page 3 of 64 mc1298-01 Understanding Brain Injury A Guide for the FamilyTable of ContentsIntroduction . 3A Team Approach . 5Brain Structure and Function . 7Causes of Brain Injury . 9The Recovery Process . 11Stages of recovery . 12Treatment of brain injury . 13Compensation Strategies . 15Thinking Changes After a Brain Injury . 16Perceptual changes . 20Behavioral Changes . 23Emotional Changes . 26Depression. 27Self-esteem . 29Communication Changes . 30Other Physical Effects of Brain Injury . 33Fatigue . 33Seizures . 34Spasticity . 36Swallowing. 37Bladder and bowel . 38Life After Brain Injury . 40Going home. 40Relationships. 40Sexuality . 42Driving . 43Returning to work. 43Returing to school . 44Recreation and leisure . 45Use of alcohol and drugs . 46Activity restrictions . 471

Page 4 of 64 mc1298-01 Understanding Brain Injury A Guide for the FamilyAvailable Resources . 48Contacting Health Care Providers . 50Appendix A: A Partnership Approach . 51Appendix B: Memory and Organizational Aids . 52Calendar . 52Cue Cards . 54Appendix C: Problem-Solving Worksheet . 55Appendix D: Americans with Disabilities Act . 56Summary . 572

IntroductionPage 5 of 64 mc1298-01 Understanding Brain Injury A Guide for the FamilyKey Messagesr #SBJO JOKVSZ BGGFDUT WJSUVBMMZ FWFSZ BSFB PG B QFSTPO T MJGF r 5IF SFMBUJPOTIJQT SPMFT BOE SFTQPOTJCJMJUJFT PG GBNJMZ NFNCFST BOE PUIFS people close to the person will experience a period of adjustment.r "EKVTUNFOUT BSF CFTU NBEF JO TNBMM TUFQT XJUI UIF JOTUSVDUJPO BOE HVJEBODF of health care team members.#SBJO JOKVSZ JT B MJGF BMUFSJOH FWFOU XIJDI BGGFDUT FWFSZ BSFB PG B QFSTPO T MJGF including his or her relationship with family members and others close to him orher. The phrase acquired brain injury refers to medical conditions that occur to theCSBJO VTVBMMZ BGUFS DIJMEIPPE DIBOHJOH JUT GVODUJPO 5IFTF DPOEJUJPOT JODMVEF TUSPLF USBVNBUJD CSBJO JOKVSZ UVNPS BOE PUIFS EJTFBTFT PG UIF CSBJO The effects of brain injury often change roles and responsibilities within the family.Family members and others close to a person with brain injury may struggleto cope with behavioral changes caused by the brain injury. The injured personalso may struggle to adjust. Family members and others close to the personNBZ GFFM TUSFTTFE CVSEFOFE FWFO EFQSFTTFE CZ UIF NBKPS DIBOHFT JO BDUJWJUJFT SFTQPOTJCJMJUJFT EBJMZ TDIFEVMFT MFJTVSF BOE TVQQPSU UIBU BSF SFRVJSFE UP BEKVTU UP UIF DPOTFRVFODFT PG BDRVJSFE CSBJO JOKVSZ 0GUFO NBKPS BEKVTUNFOUT BSF CFTU NBEF JO TNBMM TUFQT 4JNQMF DIBOHFT NBZ IFMQ UIF QFSTPO XJUI CSBJO JOKVSZ GBNJMZ BOE GSJFOET UP GJOE NPSF FOKPZNFOU JO UIFJS SFMBUJPOTIJQT BOE BDUJWJUJFT #Z UBLJOH FBDI TUSFTTGVM TJUVBUJPO POF TUFQ BU B UJNF the person with brain injury and family may feel that life is becoming a little more“normal” again.5IJT CPPLMFU DPOUBJOT JOGPSNBUJPO PO UIF IVNBO CSBJO DBVTFT PG BDRVJSFE CSBJO JOKVSZ UIF SFDPWFSZ QSPDFTT BOE CFIBWJPS DPNNVOJDBUJPO BOE QIZTJDBM DIBOHFT after brain injury. It also outlines examples of stressful behaviors and situationsthat people with brain injury may experience. Possible solutions follow eachexample. A solution that works well for one person may not work for another. ForUIJT SFBTPO UIF CFTU XBZ UP VTF UIJT CPPLMFU JT UP USZ POF TPMVUJPO GPS UXP PS UISFF XFFLT *G UIBU TPMVUJPO EPFT OPU XPSL USZ BOPUIFS 3

Page 6 of 64 mc1298-01 Understanding Brain Injury A Guide for the Family4PNFUJNFT UIF JEFBT JO UIJT CPPLMFU TUJNVMBUF GBNJMJFT UP EFWFMPQ VOJRVF TPMVUJPOT UP DIBMMFOHFT *G BGUFS USZJOH TFWFSBM TPMVUJPOT UP B QSPCMFN OPUIJOH TFFNT UP XPSL TFFLJOH BEWJDF GSPN B QSPGFTTJPOBM NBZ IFMQ " CSBJO JOKVSZ QTZDIPMPHJTU OFVSPQTZDIPMPHJTU DMJOJDBM TPDJBM XPSLFS PS PUIFS CFIBWJPS TQFDJBMJTU DBO IFMQ BOBMZ[F BOE EFWFMPQ BO BQQSPBDI UIBU DPOTJEFST UIF TQFDJBM GFBUVSFT PG UIF QBUJFOU T situation.3FDPWFSZ GSPN CSBJO JOKVSZ JT B QSPDFTT UIBU UBLFT UJNF *O SFDFOU ZFBST CSBJO rehabilitation as a specialty has advanced in its understanding of ways toencourage and maximize recovery. Your team will use all available knowledgeBOE UFDIOJRVFT XIJMF DBSJOH GPS ZPVS MPWFE POF POTVMU BOZ NFNCFS PG UIF IFBMUI DBSF UFBN UP BEESFTT ZPVS DPODFSOT BOE RVFTUJPOT 4

Page 7 of 64 mc1298-01 Understanding Brain Injury A Guide for the FamilyA Team ApproachKey messagesr .BOZ QFPQMF QMBZ B SPMF JO B QFSTPO T SFDPWFSZ BGUFS B CSBJO JOKVSZ r :PV BOE ZPVS MPWFE POF XJUI CSBJO JOKVSZ BSF UIF NPTU JNQPSUBOU NFNCFST of the health care team.The health care team is an important source of information and support to theinjured person and family. The team can recommend a treatment plan and helpyou learn skills to meet specific needs. Health care team members may include:r A primary care physician.r Physiatrists 1IZTJDJBOT XIP TQFDJBMJ[F JO QIZTJDBM NFEJDJOF BOE SFIBCJMJUBUJPO including brain injury rehabilitation.r Rehabilitation nurses /VSTFT XJUI USBJOJOH BOE FYQFSUJTF JO CSBJO JOKVSZ rehabilitation and discharge planning.r Neuropsychologists 1SPGFTTJPOBMT XJUI USBJOJOH BOE FYQFSUJTF JO FWBMVBUJOH BOE USFBUJOH UIJOLJOH CFIBWJPSBM BOE FNPUJPOBM DIBOHFT DBVTFE CZ B CSBJO injury.r Physical therapists 1SPGFTTJPOBMT XIP FWBMVBUF BOE USFBU DIBOHFT JO QIZTJDBM abilities.r Occupational therapists 1SPGFTTJPOBMT XIP FWBMVBUF BOE USFBU UIJOLJOH BOE QFSDFQUJPO QSPCMFNT BOE IFMQ BO JOKVSFE QFSTPO NBJOUBJO PS MFBSO JOEFQFOEFOU MJWJOH TLJMMT GPS FYBNQMF TXBMMPXJOH FBUJOH ESFTTJOH NBOBHJOH NPOFZ BOE safety awareness).r Speech language pathologists or speech therapists 1SPGFTTJPOBMT XIP evaluate and treat communication and thinking problems.r Recreation therapists 1SPGFTTJPOBMT XIP IFMQ B QFSTPO XJUI CSBJO JOKVSZ explore and participate in leisure activities.r Clinical nurse specialists 1SPGFTTJPOBM OVSTFT XIP IFMQ DPPSEJOBUF DBSF PG patients with brain injury and support and educate their families about theinjury and recovery process.5

Page 8 of 64 mc1298-01 Understanding Brain Injury A Guide for the Familyr Social workers 1SPGFTTJPOBMT JO UIF IPTQJUBM BOE PVUQBUJFOU TFUUJOHT XIP IFMQ HVJEF UIF BEKVTUNFOU UP BDRVJSFE CSBJO JOKVSZ 5IFZ QSPWJEF JOGPSNBUJPO PO EJTDIBSHF QMBOOJOH BTTFTTNFOU PG GJOBODJBM SFTPVSDFT BOE DPNNVOJUZ SFTPVSDF referrals. They may also assist in addressing stress management and thedevelopment of effective coping and adjustment strategies.r Other professionals, TVDI BT SFTQJSBUPSZ UIFSBQJTUT DIJME MJGF UIFSBQJTUT DIBQMBJOT EJFUJUJBOT BOE WPDBUJPOBM FNQMPZNFOU DPVOTFMPST You and the person with brain injury are important members of the health careteam. Active participation in treatment and rehabilitation is essential to recovery.5IF JOWPMWFNFOU PG PUIFS GBNJMZ NFNCFST DBSFHJWFST GSJFOET BOE DP XPSLFST also can help the person with brain injury successfully return home and to thecommunity.6

Page 9 of 64 mc1298-01 Understanding Brain Injury A Guide for the FamilyBrain Structure and FunctionThe human brain has billions of nerve cells. They are arranged in patterns thatXPSL UPHFUIFS UP DPOUSPM UIPVHIU FNPUJPO CFIBWJPS NPWFNFOU BOE TFOTBUJPO 'PS SFGFSFODF JU IFMQT UP LOPX BCPVU UIF CSBJO T TUSVDUVSF BOE GVODUJPO The brain is divided into two halves that look nearly the same but differin many functions. The halves are called the cerebral hemispheres (figure 1). Theseare further divided to create four separate areas called lobes.JEMJOFRighthemisphereLefthemisphereFigure 1. Cerebral hemispheres'PS NPTU QFPQMF UIF MFGU IBMG PG UIF CSBJO DPOUSPMT WFSCBM GVODUJPOT JODMVEJOH MBOHVBHF UIPVHIU BOE NFNPSZ JOWPMWJOH XPSET 5IF SJHIU IBMG DPOUSPMT OPOWFSCBM GVODUJPOT 5IFTF JODMVEF GPS FYBNQMF SFDPHOJ[JOH UIF EJGGFSFODFT JO WJTVBM QBUUFSOT BOE EFTJHOT SFBEJOH NBQT BOE FOKPZJOH NVTJD 5IF SJHIU IFNJTQIFSF BMTP JT involved in expressing and understanding emotions.7

Page 10 of 64 mc1298-01 Understanding Brain Injury A Guide for the Family"MUIPVHI FBDI IBMG PG UIF CSBJO IBT EJTUJODU GVODUJPOT UIF UXP QBSUT BDUVBMMZ work closely together to control the activity of the body. The left side of the brainDPOUSPMT NPWFNFOU BOE TFOTBUJPO JO UIF SJHIU TJEF PG UIF CPEZ BOE UIF SJHIU TJEF PG UIF CSBJO DPOUSPMT NPWFNFOU BOE TFOTBUJPO JO UIF MFGU TJEF 5IVT EBNBHF UP UIF SJHIU TJEF PG UIF CSBJO NBZ DBVTF NPWFNFOU QSPCMFNT PS XFBLOFTT PO UIF CPEZ T left side.Specific parts of the brain control specific functions. The effect of a brain injury ispartially determined by the location of the injury (figure 2).Touch.PWFNFOUPerceptionSpeechVisionPlanning andproblem-solvingSmellBalance andcoordinationHearingand memory)FBSU SBUF breathing andblood pressureFigure 28

Page 11 of 64 mc1298-01 Understanding Brain Injury A Guide for the FamilyCauses of Brain InjuryCauses of brain injury may include:Acquired brain injury 3FGFST UP NFEJDBM DPOEJUJPOT UIBU PDDVS UP UIF CSBJO VTVBMMZ GPMMPXJOH CJSUI DIBOHJOH JUT GVODUJPO 5IFTF DPOEJUJPOT JODMVEF TUSPLF USBVNBUJD CSBJO JOKVSZ CSBJO IFNPSSIBHF UVNPS BOPYJB BOE PUIFS OPO degenerative diseases of the brain.Aneurysm #BMMPPOJOH PG B XFBLFOFE XBMM PG B WFJO BSUFSZ PS UIF IFBSU Anoxia -BDL PG PYZHFO UP CSBJO UJTTVF XIJDI EBNBHFT UIF DFMMT Concussion " UFNQPSBSZ EJTUVSCBODF PG CSBJO GVODUJPO SFTVMUJOH GSPN B GBMM PS CMPX UIBU KBST UIF CSBJO XJUIJO UIF TLVMM BMTP DBMMFE NJME USBVNBUJD CSBJO JOKVSZ Contusion "O JOKVSZ PO UIF CSBJO T TVSGBDF TJNJMBS UP B CSVJTF Diffuse axonal injury "O JOKVSZ DBVTFE CZ QVMMJOH TUSFUDIJOH PS UFBSJOH PG DFMMT throughout the brain.Edema 4XFMMJOH DBVTFE CZ NPSF UIBO OPSNBM GMVJE JO CSBJO UJTTVF 8JUI QSFTTVSF CVJMEVQ FEFNB BMTP DBO SFTVMU JO CSBJO DFMM EBNBHF BOE CMPPE GMPX interruption.Encephalitis " QPUFOUJBMMZ MJGF UISFBUFOJOH JOGFDUJPO PS JOGMBNNBUJPO PG UIF brain.Hematoma 1PPMFE CMPPE JOTJEF UIF CSBJO UJTTVF PS PO JUT TVSGBDF 8JUI QSFTTVSF CVJMEVQ IFNBUPNBT BMTP DBO SFTVMU JO CSBJO DFMM EBNBHF BOE CMPPE GMPX interruption.Hemorrhage 1SPGVTF CMFFEJOH JOUFSOBM PS FYUFSOBM DBVTFE CZ EBNBHF UP B blood vessel.Meningitis "O JOGFDUJPO BOE JOGMBNNBUJPO PG UIF DFOUSBM OFSWPVT TZTUFN UIBU affects the membranes and cerebrospinal fluid surrounding the brain and spinalcord.Mild traumatic brain injury " UFNQPSBSZ EJTUVSCBODF PG CSBJO GVODUJPO resulting from a fall or blow that jars the brain within the skull.Skull fracture " CSFBL JO UIF TLVMM CPOF UIBU DPWFST UIF CSBJO 9

Page 12 of 64 mc1298-01 Understanding Brain Injury A Guide for the FamilyStroke "O JOUFSSVQUJPO PG CMPPE GMPX UP QBSU PG UIF CSBJO DBVTFE CZ BO BSUFSZ CMPDLBHF IFNPSSIBHF PS BOFVSZTN %FDSFBTFE CMPPE GMPX SFTVMUT JO MJUUMF PS OP oxygen reaching brain cells.Traumatic brain injury "OZ JOKVSZ UP UIF CSBJO UIBU SFTVMUT GSPN B WJPMFOU GPSDF USBVNB UP UIF IFBE TVDI BT BO JOKVSZ GSPN B NPUPS WFIJDMF BDDJEFOU GBMM PS physical blow.Tumor "O BCOPSNBM HSPXUI PS UJTTVF UIBU MPPLT OPSNBM CVU IBT OP GVODUJPO The tumor may be malignant (cancerous) or benign (noncancerous).10

Page 13 of 64 mc1298-01 Understanding Brain Injury A Guide for the FamilyRecovery ProcessKey messagesr 3FDPWFSZ GSPN B CSBJO JOKVSZ JT B QSPDFTT UIBU UBLFT UJNF r 7BSJPVT USFBUNFOU PQUJPOT BOE DPQJOH TUSBUFHJFT DBO IFMQ MJGF HSBEVBMMZ GFFM “normal” again.3FDPWFSZ GPMMPXJOH B CSBJO JOKVSZ NBZ CF NFBTVSFE JO XFFLT NPOUIT PS ZFBST and slows with the passage of time. Some of the effects of brain injury can be longlasting and recovery may be incomplete. Although some people with severe brainJOKVSJFT FYQFSJFODF POMZ NJME MPOH UFSN EJGGJDVMUJFT PUIFST NBZ SFRVJSF DBSF PS special services for the rest of their lives.*O UIF EBZT BOE XFFLT JNNFEJBUFMZ GPMMPXJOH CSBJO JOKVSZ UIF GVODUJPO PG TVSWJWJOH CSBJO UJTTVF JT PGUFO BGGFDUFE CZ TXFMMJOH CMFFEJOH BOE PS DIBOHFT JO UIF CSBJO T DPNQMFY DIFNJTUSZ 4PNFUJNFT CMPPE BDDVNVMBUJPO NVTU CF SFNPWFE surgically to reduce swelling and pressure within the brain. Controlling swellingBOE BMMPXJOH UJNF GPS UIF CSBJO T CMPPE GMPX BOE DIFNJDBM TZTUFNT UP SFDPWFS usually lead to improved function.&YBDUMZ XIBU IBQQFOT JO UIF CSBJO EVSJOH UIF MBUFS TUBHFT PG SFDPWFSZ JT OPU DMFBS CVU TPNF QBSUT JO UIF QSPDFTT BSF CFDPNJOH DMFBSFS /FX SFTFBSDI JT TIFEEJOH MJHIU PO CSBJO UJTTVF BOE JUT DBQBDJUZ UP SFQBJS JUTFMG .BOZ UIJOHT DBO PDDVS UIBU IFMQ SFTUPSF TVSWJWJOH CSBJO UJTTVF UP NBYJNJ[F GVODUJPO 'PS FYBNQMF BMUIPVHI UIF UPUBM OVNCFS PG CSBJO DFMMT NBZ OPU DIBOHF JU JT UIPVHIU UIBU TVSWJWJOH CSBJO UJTTVF has the capacity gradually to learn how to perform some functions of destroyedcells.*O DBTFT PG USBVNBUJD CSBJO JOKVSZ USBVNB PGUFO PDDVST UP PUIFS QBSUT PG UIF CPEZ XJUI BTTPDJBUFE CMFFEJOH TXFMMJOH BOE DIBOHFT JO GVODUJPO 5IF FGGFDUT PG UIFTF other injuries can prolong overall recovery and maybe even further damage theCSBJO 'PS JOTUBODF FYDFTTJWF CMFFEJOH NBZ EFQSJWF UIF CSBJO PG OFFEFE CMPPE BOE oxygen. Prompt treatment of associated injuries may help limit brain damage.The medical community is gradually realizing how a damaged brain recovers. VSSFOU USFBUNFOU NFUIPET BSF CBTFE PO B HSPXJOH VOEFSTUBOEJOH PG UIF CSBJO T recovery processes.11

Page 14 of 64 mc1298-01 Understanding Brain Injury A Guide for the FamilyStages of recoveryKey messagesr .PTU BEVMUT XJUI B CSBJO JOKVSZ QSPHSFTT UISPVHI DPNNPO SFDPWFSZ TUBHFT r 5IF MFOHUI BOE PVUDPNF PG FBDI TUBHF DBOOPU CF QSFEJDUFE r %VSJOH SFDPWFSZ B QFSTPO NBZ TIJGU CBDL BOE GPSUI CFUXFFO TUBHFT r *ODPOTJTUFODZ JT DPNNPO Researchers do not understand exactly what happens to the brain duringrecovery. Factors such as age and the severity and location of a brain injuryDBO BGGFDU CVU EP OPU FOUJSFMZ QSFEJDU UIF PVUDPNF PG SFDPWFSZ 'PS FYBNQMF some people with significant brain injuries experience only mild long-termEJGGJDVMUJFT XIJMF PUIFST OFFE MJGFMPOH TQFDJBM DBSF *O UIF GJSTU GFX XFFLT BGUFS B CSBJO JOKVSZ TXFMMJOH CMFFEJOH PS DIBOHFT JO CSBJO DIFNJTUSZ PGUFO BGGFDU UIF GVODUJPO PG IFBMUIZ CSBJO UJTTVF 5IF JOKVSFE QFSTPO T FZFT NBZ SFNBJO DMPTFE BOE UIF QFSTPO NBZ OPU TIPX TJHOT PG BXBSFOFTT "T TXFMMJOH EFDSFBTFT BOE CMPPE GMPX BOE CSBJO DIFNJTUSZ JNQSPWF CSBJO GVODUJPO VTVBMMZ JNQSPWFT 8JUI UJNF UIF QFSTPO T FZFT NBZ PQFO TMFFQ XBLF DZDMFT NBZ CFHJO BOE UIF JOKVSFE QFSTPO NBZ GPMMPX DPNNBOET SFTQPOE UP GBNJMZ NFNCFST BOE TQFBL " QFSJPE PG DPOGVTJPO BOE EJTPSJFOUBUJPO PGUFO GPMMPXT EVSJOH XIJDI UIF QFSTPO T BCJMJUZ UP QBZ BUUFOUJPO BOE MFBSO TUPQT BOE BHJUBUJPO OFSWPVTOFTT restlessness or frustration may appear. Sleeping patterns may be disrupted.Overreaction to stimulation and physically aggression may result. This stagecan be disturbing for family because the person behaves so uncharacteristically.Inconsistent behavior also is common. Some days are better than others. ForFYBNQMF B QFSTPO NBZ CFHJO UP GPMMPX B DPNNBOE MJGU ZPVS MFH TRVFF[F NZ finger) and then not demonstrate this behavior again for a time. This stage ofSFDPWFSZ NBZ MBTU EBZT PS FWFO XFFLT GPS TPNF )PXFWFS PODF EFNPOTUSBUFE B CFIBWJPS VTVBMMZ BQQFBST BHBJO *O UIJT TUBHF PG SFDPWFSZ USZ OPU UP CFDPNF anxious about inconsistent signs of progress. Ups and downs are normal.12

Page 15 of 64 mc1298-01 Understanding Brain Injury A Guide for the Family'BNJMZ BOE GSJFOET DBO IFMQ CZ DSFBUJOH B DBMN RVJFU FOWJSPONFOU GPS FYBNQMF MJNJUJOH UIF OVNCFS PG QFPQMF JO UIF QFSTPO T SPPN UVSOJOH PGG UIF UFMFWJTJPO BOE EJNNJOH UIF MJHIUT *O BEEJUJPO BTL RVFTUJPOT PG UIF DMJOJDBM OVSTF TQFDJBMJTU BOE PUIFST PO UIF IFBMUI DBSF UFBN XIP BSF SFTQPOTJCMF GPS LFFQJOH ZPV BDDVSBUFMZ JOGPSNFE :PV BSF FODPVSBHFE UP BTL RVFTUJPOT UP TUBZ BCSFBTU PG ZPVS MPWFE POF T progress.-BUFS TUBHFT PG SFDPWFSZ DBO CSJOH JODSFBTFE CSBJO GVODUJPO 5IF QFSTPO T BCJMJUZ UP SFTQPOE NBZ JNQSPWF HSBEVBMMZ /FX SFTFBSDI JT JOWFTUJHBUJOH UIF CPEZ T BCJMJUZ UP SFQMBDF EBNBHFE CSB

Page 9 of 64 mc1298-01 Understanding Brain Injury A Guide for the Family. 8 "MUIPVHI FBDI IBMG PG UIF CSBJO IBT EJTUJODU GVODUJPOT UIF UXP QBSUT BDUVBMMZ work closely together to control the activity of the body. The left side of the brain DPOUSPMT NPWFNFOU BOE TFOTBUJPO JO UIF SJHIU TJEF PG UIF CPEZ BOE UIF SJHIU TJEF

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