Waiting to work - Minnesota Brain Injury Alliance

A state affliate of the Brain Injury Association of AmericaHEADLINESWINTER 2004/05IN THIS ISSUE:Check out the NewsBriefs sectioninside on page 4The Associationadds case managementto its servicesin side on page 5Learn about medicationsused in the treatment ofbrain injuryinside on page 6Creative article onaphasia and poetryinside on page 12New blood test for TBIdiagnosis!inside on page 13Estate Planninginside on page 16UPCOMING EVENTS:Brain Injury BasicsFebruary 15Walk for Thought draws a thousand participantsStaff ReportMINNEAPOLIS - The 2004Walk for Thought was the largestfundraising event ever in the20 years of the Brain InjuryAssociation of Minnesota’shistory. The walks in the TwinCities and Blackduck drewnearly 1,000 people for a day ofcelebration, commemoration, andcommunity involvement.Nearly 1,000 people tooktheir time, energy, and resourcesto promote the Association andthe important issue of braininjury. In the course of this event,1,000 people knocked on theirneighbors’ doors, made telephonecalls, sent emails and letters,and told their personal storiesabout brain injury to countlessMinnesotans. As with other BrainInjury Association of Minnesotaactivities, this was a tremendousgrassroots effort of which we canall be very proud. Brain injury isconsidered the “silent epidemic”due to the low public awarenesson this issue, but because of thephoto by Sharon RolencIn 2003, the Dragonfly Clan pledged to be this year’s top fundraisers. Keepingtheir promise, they raised over $5,100 for the 2004 Walk for Thought. Picturedfrom left to right: Jim and Sue Winkel, Team Captain Tracy Winkel-Johnson, andChad Johnson.efforts of a growing number ofindividuals, we are making adifference.This year, over 50 teamcaptains, 23 corporate sponsors,and 14 volunteers went over andabove the call of duty. This levelof support is impressive andexciting as it demonstrates theWALK FOR THOUGHTon page 10Waiting to workVocational Rehabilitation waiting list felt statewideNew in 2005:Brain Injury Basics 2March 15Save the Date:3rd Annual Xtreme SafetyFest at the Mall of AmericaApril 23The 20th AnnualStatewide Conferenceon Brain InjuryMay 20 & 21Check page 2 for moredetails on these eventsBrain InjuryAssociation ofMinnesota helpline:1-800-669-6442www.braininjurymn.orgBy Sharon RolencAfter six years of a rigorouscollege course load, MatthewBalken was well on his way toestablishing his career as a physicsand science teacher. On April24, 2004, the Erhard, Minnesotaresident fell from a roof, landingon the back of his head. Balkenfell so hard that he flipped overand hit the front, causing injury tomultiple parts of his brain.“I was in intensive care for11 days, unconscious for 10 days,on life support for four days, inacute care for a month and then arehabilitation hospital for anothermonth,” he said.Balken sustained a brain injurythat effected hearing in his leftear, nerve damage, coordinationand balance, short term memory,problem solving, multitasking andother executive functioning skills.“Those are the skills I reallyrely on as a teacher,” he said.The neuropsychologicaltests that he took put him in theaverage range for math. “That’snowhere near what I used to be.The problem with those tests isthat they are designed for a broadrange of people and the averagescores are based on that broadrange,” said Balken.Concerned that he may notbe able to teach at the samelevel as before, Balken turned toVocational Rehabilitation (VR)to help him figure out his careeroptions. VR is a governmentprogram designed for personswith disabilities who need support34 13th Ave NE, Suite B001Minneapolis, MN 55413Time Dated MaterialAddress Service Requestedservices to prepare for work, or tofind or keep a job. Services canrange from minimal job coachingto proving a four year degree.“One of the beauties of theVR program is that our servicesare tailored to the specific needsof the individual. The plans reallyrun the gamut. There are someWAITINGon page 8Non-profit OrganizationU.S. PostagePAIDMinneapolis, MNPermit #163

HEADLINES WINTER 2004/05CALENDAR of EVENTSFebruary 15: Brain Injury Basics1Confusion. Frustration. Sorrow.Anger. Fear. Isolation. Theseare some emotions a person withbrain injury may feel after injury.Families, friends & loved onesmay feel this way, too.Learn about the impact ofbrain injuries caused by concussion,traumas such as crashes orfalls, stroke, aneurysm & coma.Learn about what brain injuryis; the common side effects ofbrain injury; compensation techniques;and tips about how to relateto people who have sustainedbrain injury.These classes are offered fourtimes a year. Class begins at 6:00p.m. and runs until 8:30 p.m.Remaining dates for 2005 are May17, August 16 and November 15.To register, call 612-378-2742 or1-800-669-6442 in greater Minnesota.May 20 & 21: 20th Annual StatewideConference on Brain injurySave the date! The 20th AnnualConference on Brain Injurywill be held at the St. Cloud CivicCenter in St. Cloud, Minn. Turn topage 7 for complete details!March 15: Brain Injury Basics 2This new class at the Associationaddresses the life change thatoccurs with brain injury: majorstages of adjustment, emotionalaspects of the change and adjustmentdifficulties.These classes are offered fourtimes a year. Class begins at 6:00p.m. and runs until 8:30 p.m.Remaining dates for 2005 are June21, September 20 and December20.Support GroupsApril 23: 3rd Annual Xtreme SafetyFest at the Mall of AmericaSave the date! The 3rd AnnualXtreme Safety Fest is an excitingfamily activity with live BMX &Skateboard demonstrations, safetyinformation and free helmets.Send the message to your childrenthat they can play it safe whileplaying hard! The event takesplace from 1:00 - 4:30 pm.New this year - the Associationwill be taking its safety and injuryprevention program on the road.You organization has the opportunityto have the Association bringfree helmets and safety informationto your community event.Watch the Association website forRFP information.Brain injury support groups can help you find others with similarexperiences, useful information about brain injury and solutions toproblems. The following results are just some of the key benefits ofsupport groups:• Emotional healing comes when people interact with otherpeople.• Sharing of similar experiences helps members feel lessalone and more ready to deal with day to day issues.• Education results from the exposure to information andpersonal experiences in a group.• Socialization occurs when connections with people aremade and confidence in social skills develops when appropriateinteraction occurs in support groups.• Safety, in the environment of a confidential, supportive,non-judgmental group, allows for honest disclosure and sharing ofcommon difficulties.• Self-expression, as emotions are experienced and released,creates a greater understanding of oneself.• A sense of growth occurs as long-term members see newparticipants and reminisce about where they began and how farthey have come in their personal journey.The Brain Injury Association of Minnesota makes referrals tosupport groups throughout the state, including for persons with braininjury, their families and friends and for young persons.These groups are autonomous, self-determined peer groups andare independent of the Association.For meeting times, location, and a contact person for a specificsupport group, or for information about how to start your own group,call the Brain Injury Association of Minnesota at 612-378-2742 or1-800.669.6442.Letter to the EditorDear TBI Advocate,34 13th Ave NE, Suite B001Minneapolis, MN 55413612.378.2742 or 800.669.6442fax: 612.378.2789www.braininjurymn.orgEmail: info@braininjurymn.orgMissionThe mission of the Brain Injury Association of Minnesota is to create a betterfuture through brain injury prevention, research, education and advocacy.Board of DirectorsNancy Carlson, ChairOtto Bang Richard Bloom Ken BrittonBarb Fulton Tom Gode Robin LandyGwyn Leder Sue Lepore Craig MartinsonSue Meserow Sarah Moeller Russ PhilstromDave Scott Kate Shannon Elizabeth Skinner SandraSmith Mike Strand Terri TraudtPat WinickAssociation StaffMichelle Brandes, Case ManagerBrad Donaldson, Director of OperationsKimberly Ferencik, Volunteer CoordinatorTom Gode, Executive DirectorMark Hahn, Administrative AssistantWillis Johnson, Data Entry SpecialistEllen Kuschke, Communications InternKaty O’Brien, Resource Facilitator Team LeaderIvy Peterson, Resource FacilitatorShannon Robins, Public Policy DirectorSharon Rolenc, Public Awareness DirectorChristina Saby, Resource FacilitatorArdis Sandstrom, Associate DirectorOttar Schmitz, Development CoordinatorAnne Schuller, Education Coorinatorpage 2The results are in and they are good! Overall, the TBI Actreceived a modest increase in funding. All TBI Act programswere level-funded (received the same amount of money as fiscalyear 2004) with an increase of $515,000 for TBI programs in theCenters for Disease Control and Prevention (CDC).Our letter asked Congress to pass the House recommended $1million increase for CDC TBI programs. They compromisedand approved $515,000. That is doing well in the current budgetenvironment!We have no doubt that the thousands of emails and letters thatflooded Capitol Hill in the past month had an impact!With the budget for fiscal year 2005 set, we now shift our sightsto the Reauthorization of the TBI Act itself in 2005.We will need your continued support to make sure this importantlaw does not disappear! Stay tuned and congratulations on a jobwell done.Geoffrey M. LauerNational Director of Affiliate RelationsBrain Injury Association of AmericaEditorial PolicyHeadlines is published quarterly by the Brain Injury Association of Minnesota.The Editor reserves the right to edit submitted materials for style and space.The Association does not endorse, support, or recommend any specific method,facility, treatment, program, or support group for persons with brain injury andtheir families. Please call for advertising rates.Letters to the Editor PolicyLetters to the Editor should be limited to 300 words. Letters may be editedfor spelling, grammar and length. In order for letters to be considered, pleaseinclude your name, address and the daytime phone number of the author. TheAssociation reserves the right to refuse letters for publication., and submissionof material does not guarantee publication. Opinions expressed in Letters to theEditor are solely those of the author and do not represent the opinions or positionsof the Association.

HEADLINES WINTER 2004/05page 4NEWS BRIEFSResourceFacilitationMore and more hospitalsthroughout the state arediscovering that the ResourceFacilitation Program is a usefultool for their discharge staff. Byproviding this free resource toyour patients, it can help: Save time and providesupport to your discharge planners,nurses, social workers and othersinvolved with the dischargeprocess. Provide quality customerservice to your patients and serveas a positive indicator of patientexperience. Support your patients afterthey leave the hospital to copewith the issues of living with abrain injury.The Resource FacilitationProgram is a free follow-upservice through the Brain InjuryAssociation of Minnesota. Itprovides support for Minnesotansto cope with the issues of livingwith a traumatic brain injury andhelp them transition back to work,school and their communities.This service does not replaceany medical or rehabilitationfollow-up that may be needed.It is intended to support patientsand their families, as well ashelp ease the minds of healthcareprofessionals, knowing theirpatients are getting follow-upsupport on a regular basis. Theprogram is funded through acontract with the MinnesotaDepartment of Health, making itpossible for every hospital in thestate to offer the program as a freeservice to their patients.For persons with braininjury, Resource Facilitationcan help: answer questions, problem-solve issues, identify resources withinyour community, and educate family members,employers, and educatorsabout what it means to livewith a brain injury.For persons with brain injury,or family members who missedthis opportunity through theirhospitals, it is still possible to selfreferto the Resource Facilitationprogram.For more information, contactthe Association at 612-378-2742or 1-800-669-6442.Courage CenterCloses DayProgramsOn November 12, CourageCenter closed their Adult Day andStructured Day programs. Thedecision to close the programsresulted from a number ofeconomic factors including a softeconomy following 9/11. Theseincluded cuts in federal, state andlocal funding for social serviceorganizations such as Courage;lower levels of donations tosupport programs and services;and significant increases inmedical insurance and basicoperating costs.The Courage Center expresseda commitment to working withconsumers, their families, casemanagers or others to help throughthe transition. For more specificprogram or transition questionsor concerns contact one of thesepeople:Adult Day participants:Nancy Huizenga, Vocationaland Community-Based ServicesDirector, 763-520-0313Brigid Alseth, Adult Day ProgramDirector, 763-520-0420Structured Day participants:Karen Larson-Hahn, clinicaldirector, Mental Health & FamilySupport Services,763-520-0354Sharon Rendack, supervisor,Behavior Services, 763-520-0441For more information aboutother resources for Adult Day andStructured Day programs in yourcommunity, contact a ResourceFacilitator at the Brain InjuryAssociation of Minnesota at 612-378-2742.Bethesda NowAdmitting TeensBethesda RehabilitationHospital will now accept patientsas young as sixteen, whichincludes the Brain Injury CareUnit on the St. Paul campus.Within Brain Injury Carethere are three inpatient programs:Brain Injury Rehabilitation,Neurobehavioral Crisis andAssessment and NeurobehavioralBrain Injury.What’s new at the Association and in the brain injury communityThe Brain InjuryRehabilitation is meant for patientswho need intense physical andcognitive rehabilitation, while theother two programs focus more onthe behavioral aspects of BI.Neurobehavioral Crisisand Assessment is a short-termprogram designed for people withsevere behavioral problems orconsumers with brain injuries whoneed an assessment. They offerboth assessment services and crisisstabilization plans. The intent ofthe Neurobehavioral Brain Injuryprogram is to treat behavioralproblems on a long-term basis:people with good rehabilitationpotential but with behaviors thatinhibit the rehabilitation process.Dr. Robert Karol is both theProgram Director of Brain InjuryServices and the Director ofNeuropsychology and Psychology.“A few months ago we startedtaking adolescents into theprogram,” said Karol. “We haddecided there was enough of acommunity there that we should.”For more information, or tocontact Bethesda’s Brain InjuryCare Admissions office, call 651-232-2760 or 1-800-566-2720.Association OffersBrain Injury Basics,part 2New for 2005! Your commentson the BIB feedback forms havemade a difference! In responseto the concerns and needs ofour consumers, the Associationhas added a Part 2 class to itscornerstone Brain Injury Basics(BIB). This free intermediateworkshop will address the lifechange of having a brain injury:major stages of adjustment,emotional aspects of the changeand adjustment difficulties.Adjustment to disability may bedescribed as a series of stages ormajor tasks, which may not alwaysbe neat and orderly. Individualsprogress through stages at differentrates, and adjustment is a life-longprocess. Emotional aspects ofdisability may be a major factorin outcomes. The schedule for2005 is as follows: Third Tuesdayof March, June, September andDecember, from 6:00 PM-8:30 PMAssociation OffersFamily RetreatThe Brain Injury Associationof Minnesota will offer a familyretreat at Camp Courage onMay 6 - 7, 2005. The campingexperience begins Friday eveningand concludes mid-afternoonon Saturday. Three meals areincluded in the retreat.Families needn’t worry about“roughing it” – the retreat doesn’trequire sleeping in tents. CampCourage has lovely cabins,situated in a rustic environment.If you have a school aged childwith a brain injury, this retreat isdesigned just for you. Families arewelcomeCamp Courage is a completelyaccessible facility. The retreatprovides a structured, enrichingpersonal and recreationalexperience. Watch Enews, theAssociation website and the nextedition of HEADLINES for moredetails. For more information,contact Anne Schuller, EducationCoordinator at annes@braininjurymn.org, or by phone at612-378-2742; or Deb Williamson,State TBI Specialist via email atdcwilliamson@int287.k12.mn.usor by phone at 612-638-1532.Special thanks toMedtronicOn October 29, 2004,Medtronic hosted a supportgroup leader training day. Theygenerously provided a room, breakfoods, and lunch for 28 current andfuture support group facilitators.The training was planned bythe Brain Injury Association, theEpilepsy Foundation, AmericanParkinson’s Disease, and theMinnesota Stroke Association.A special thanks to JerryHartlaub (retired Medtronicemployee and board member ofthe Epilepsy Foundation) andKathleen Lynch (Medtronicemployee) for their contributions.Jerry Hromatka led the groupthrough facilitation skills training,and Adine Stokes led a session onworking with caregivers.Thanks again to Medtronic fortheir generosity and support.

WINTER 2004/05page 5HEADLINESBrain Injury Association of Minnesota Adds Case Management to its ServicesBy Ellen KuschkeThis September, the BrainInjury Association of Minnesotaadded Case Manager MichelleBrandes to its Minneapolisstaff. “Case management wasjust a natural next step for us,”said Associate Director ArdisSandstrom. “The response fromthe resource facilitation programhas been very positive, so casemanagement is just taking it a stepfurther. We’re really looking at[providing] a full continuum ofservices; addressing the needs ofall people with brain injury.”A case manager’s mainfunction is to coordinate servicesand assist individuals to live atthe highest level of independencepossible as they adjust to theissues related to their traumaticbrain injury (TBI).Most TBI consumers andfamily members quickly learn theneed to explain traumatic braininjury to everyone, sometimeseven case managers. However,when consumers get referred toMichelle Brandes at the BrainInjury Association, this isn’tnecessary. Brandes has workedwith people with TBI as a socialworker with Courage Center.She has an established historyproviding case management forpersons with brain injury.“When the consumers arereferred to me, a lot of times it’sa big relief for them. The familymembers don’t have to explainanything,” said Brandes. “Theyfeel much better, working withthe Brain Injury Association andsomeone with experience [dealingwith TBI]. It really raises theconsumer’s comfort level, too.”According to Brandes, one ofthe most vital (and lesser known)aspects of case management isre-socialization. After sustaininga brain injury, many consumersendure a long hospital stay,personality changes, memorylosses and mood disturbances.These demanding changes create adifferent lifestyle, often an isolatedone. The aftermath of a braininjury can cause a definite lack ofsocial involvement.There are many availableservices to address this problem:individual living skills classes,community day programs,support groups and sports andrecreation sessions. Services likethese help people with TBI toadjust to life with a disability andcreate a socially healthy lifestyle.Unfortunately, many people withTBI and their families are oftenunaware of these resources. A casemanager notifies consumers ofthe services available to them andcoordinates these services.Since case managerscoordinate care with thegovernment and the healthcareindustry, the job demands attentionto detail and a lot of paperwork.However, to Michelle Brandes, thefocus of the work remains clear:“Putting the person first. We makesure their safety and health needsare met within their community.”For more information aboutcase management, contactMichelle Brandes at 612-378-2742.photo by Sharon RolencFormer board of directors and staffers gather at the 20th Anniversary Party.From left to right: Baba Finch, Chris Duff, Fran Conklin and Vicky VogelsComprehensiveBrain InjuryCare andRehabilitation• Family Involvement• Prevention Services• Emergency Services• Inpatient Trauma ServicesCoordination• Acute Inpatient Stabilization• Brain Injury Rehabilitation• Knapp Rahabilitation Center• Mild to Moderate TBI Clinic• Pediatric and Adult• Community ReintegrationReferrals/Follow-up• Interdisciplinary Teams• Survivors Group• Statewide PhysiciansReferral Network• Community Education(612) 873-3950 www.hcmc.org

HEADLINES WINTER 2004/05Medications Used in the Treatment of Brain InjuryBy Kenneth R. Britton, DOBrain injury, whether acquiredthrough trauma, vascular injury,lack of oxygen, or tumors, canhave a serious negative impacton our ability to think, remember,move, care for our personal needsand work. Physicians who treatbrain injury often use medicationsto help promote brain recovery,treat symptoms related to thebrain injury, or improve function.Depending on what problem thephysician is trying to address,they can prescribe a number ofdifferent types of medicationand also make a choice betweendifferent medications of the sameor similar type. It is commonto use medications that work indifferent ways together at the sametime to improve the results and tominimize any side effects.This article will address thedifferent types of medications,how and why they are used, whatto expect from them. Every braininjury is unique so the medicationplan must be individualized, butthere are some common guidingprinciples that can be followed.Essentially every medicationhas good points and bad points.The good points are called thetherapeutic effects or benefits. Thebad points are called side effects.Generally, medication is used forthe therapeutic effect, but once in awhile one will be used for the sideeffects. One example is Trazodone,a fairly weak antidepressant that isoften used to help with relaxationand sleep at night. Side effectscan develop right away or aftertime. With some side effects theyget better in a few days after thebody gets used to the medication.In other cases they stay the sameor get worse with time.Some medications can behelpful in the short term, butcause more problems in the longterm. An example is many ofthe calming medicines (Ativanand Haldol to name the mostcommon). They work very well tocontrol agitation or aggression, butgenerally make people sleepy andmentally slow, which is a problemfor a survivor who is working hardto stay awake and stay focused.Every medication choice hasthe potential to be helpful andalso to be not helpful or at timesharmful. Physicians generally willnot know how a specific individualwill respond to a medicationuntil it is tried. For this reason,physicians tend to start at alower dose and slowly increaseit while monitoring the survivorfor positive as well as negativeresponses. If this is done throughthe clinic it may mean that morefrequent visits are required untileveryone is satisfied that the rightmedication at the right dose isbeing prescribed. If there is ever aquestion or concern about possibleside effects from a medication theclinic or doctor should be notifiedas soon as possible.For most persons with braininjury there is a period of up totwo years after their injury wherethe brain is healing. This healingpage 6is most dramatic in the first fewmonths and generally slows downafter 3-6 months, but it can stillmean a significant change in thesurvivor’s ability and need formedication. As a result of thischanging condition, the medicationstrategy may also change as timeprogresses. Generally, this meansthat medications that were helpfulearlier in the recovery may be ableto be reduced or eliminated as timeprogresses. However, at timesthe medication will be used on anongoing basis. Again, if in doubtthis should be discussed with thephysician.The table below lists some ofthe common medications used thatseem to be most helpful in braininjury treatment.This list does not include all ofthe medications that can be usedin the treatment of brain injuryrelated problems, but it does haveMEDICINEon page 16Medication TypeExamplesBenefitsAlerting Ritalin, Provigil, Stratera General alertness and focused attentionAntidepressantsEffexor, Celexa, Lexapro, Prozac,ZoloftIncreases serotonin, and sometimesnorepinephrine levels in thebrain to let the brain work better.Increased responsiveness andfaster mental processing. Alsoprevents or treats depression relatedto the injury.Dopaminergic agents Bromocriptine, Amantadine Increases dopamine levels in thebrain. Improved alertness andprocessing. May also help withlanguage function.Atypical antipsychotics Seroquel, Zyprexa, Risperdol Calming effect and improves restlessnessand agitation generallywithout excessive sedation.Non-narcotic pain medication Tylenol, Ibuprofen, Celebrex Treat pain, especially if headache ortrauma. May be used on a scheduledbasis to control and prevent pain, oras needed.Narcotic pain medicationPercocet, Vicodan, Morphine,Tylenol #3Good for acute pain, especially iftrauma is present. Control of painlikely to improve overall function,including cognition.Seizure medicines Dilantin, Keppra, Depakote Control seizures. For most personswith TBI this is mainly usedearly in recovery. If no seizureshave occurred, the medication maybe able to be stopped.Anti-spasticity medicines Baclofen, Zanaflex, Dantrium Control spasticity and spasms thatcause pain, limit function, or limitpositioning.Side EffectsExcessive stimulation, fast heartbeat, high blood pressureExcessive stimulation, changes inappetite, restlessness. Can causeincreased irritability at times.Nausea and sometimes excessivestimulationMay cause sedation and mentalslowing.Watch for stomach problems, butgenerally well tolerated and shouldnot cause sedation.Can cause sedation, mentalslowing, and decrease inhibitionsleading to more behaviorproblems. A non-narcotic ispreferable over narcotic painmedication if at all possible.Sedation and mental slowing.Generally cause sedation andmental slowing in brain injury.Use with caution, but may alsowant to consider other treatmentslike Botox or Intrathecal Baclofen(ITB).

WINTER 2004/05page 7HEADLINESDate set for 20 th Annual Statewide Conference on Brain InjuryStaff ReportMINNEAPOLIS - The BrainInjury Association AnnualConference is now set for May20-21, 2005 at the St. CloudCivic Center. The conferenceplanning committee decided on“Bridging Islands” as this year’stheme. Keynote speakers for theevent include Dr. Al Condeluciand playwright/storyteller KevinKling.Dr. Al Condeluci is one ofAmerica’s leading consultants onhuman services and communityissues. He’s campaigned fora number of policy changesregarding people with disabilities,including the Americans withDisabilities Act of 1990.He speaks to national andinternational audiences reachingover 10,000 people each year.As United Cerebral Palsy (UCP)of Pittsburgh’s current executivedirector, Dr. Al Condeluci has28 years of service at UCP ofPittsburgh and is internationallyrecognized as a leader in humanservices.Condeluci is also a professorat the University of Pittsburgh’sSchool of Social Work and aMasters professor in NonprofitManagement at Robert MorrisUniversity. Three of his books,Interdependence (1991), BeyondDifferences (1995), and CulturalDr. Al CondeluciShifting (2001) are being usedin more than 100 colleges anduniversities. Dr. Condeluci’s latestbook, Advocacy for Change: AManual for Action, serves as ahands-on guide for communityactivists.Kevin Kling is a localplaywright, humorist, storytellerand stage performer. When hewrites, the details are usuallyspecific to the upper Midwest, buthis work is more of a universalexperience: full of childhoodstories and topical observations.Kling has the ability to capturethe many details of a moment injust a few words. As he explainsit, “I have a small command of theEnglish language so I try to makeeach word a hero.”A Minnesota native andgraduate of Gustavus AdolphusCollege’s Theatre Program,Kling has been awarded manyprestigious arts grants andfellowships including TheNational Endowment for the Arts,The McKnight Foundation, TheMinnesota State Arts Board, TheBush Foundation and The JeromeFoundation. A central figure in theMinneapolis Theatre community,Kling has written over a dozenplays and adaptations. Kling is afrequent storyteller on NationalPublic Radio’s “All ThingsConsidered,” and has addressedKevin Klingdisability issues in many of hiscreative endeavors.The 2005 annual conferenceplanning is underway. Sponsorshipmaterials will be mailed in earlyJanuary. For more informationabout conference sponsorship andexhibit opportunities, call Ottarat 612-238-3235. To volunteer atthis event, contact the VolunteerCoordinator, Kimberly Ferencik at612-378-2742.Helpingpatients rebuildtheir livesMayo Clinic Physical Medicine and Rehabilitationprovides comprehensive rehabilitation and medical servicesfor people with traumatic brain injury and other types ofacquired brain disordersWhy Mayo Clinic?• Level 1 Trauma Center• Only Midwest NIDRR* designated TraumaticBrain Injury Model System• Comprehensive outpatient and inpatientevaluation and treatment programs• Accredited by Commission Accreditation of RehabilitationFacilities (CARF) and Joint Commission on Accreditationof Healthcare Organizations (JCAHO)Mayo Clinic200 First Street SWRochester, MN 55905For more information contact:Program Secretary 507-255-3116*National Institute on Disability and Rehabilitation Research

HEADLINES WINTER 2004/05WAITINGfrom page 1people who come to us who havemarketable skills, but becauseof limitations associated withtheir disability, they are havingdifficulty accessing the job market.They might be involved withVR for less than a year. Thereare others who come who don’thave marketable skills and basedon their aptitudes and abilitiesand interests, they may involvethemselves in a four year collegeprogram,” said Paul Bridges,interim director for rehabilitationservices for the Department ofEmployment and EconomicDevelopment (DEED), thedivision of the government thatoversees VR.In cases like Balken’s, personswith disabilities turn to VR tohelp determine if they can returnto their profession at the samelevel as they were pre-injury, whataccommodations they would needto return to work, or if they can’treturn to the same job, what otheremployment or training optionsexist.To Balken’s surprise, hedidn’t qualify as a “priority one”candidate, and was told he mostlikely would not be served by VRat all.“We determine who is in whatpriority category based on howthe person gets along relative toseven areas of functioning. Anindividual has to have seriousfunctional limitations in terms ofemployment in three or more areasin order to be considered in thefirst priority group,” said RobertaPisa, director of consumer andstaff services for DEED.The seven areas of functioningare mobility, self-direction,self-care, interpersonal skills,communication, work toleranceand work skills.“[Vocational Rehabilitation]seems like a great program foreveryone but me. I was told atmy last doctor’s appointmentthat for the outside observer, I’mrecovering quite well. I can talkwell, I can move around okay. Butit’s the things that people can’t seethat are my main deficits. That’sthe hardest thing to cope with,” hesaid.Balken admits that he couldprobably land a low-skilled retailposition. “But I didn’t go tocollege for six years to do thatbecause I fell off a roof. It’s likeyou’re supposed to accept a lesserjob or lesser career, when youwouldn’t have to if you had a littlehelp, and it’s impossible to getback into the swing of things allby yourself. That’s very hard toaccept when all you want to dois return to being a productive,working person again.”Vocational Rehabilitation hasa long history of successfullyassisting persons with disabilitiesin their return to work, and forthe first time, has been facedwith difficult decisions to makeabout their budget. VR instituteda waiting list for priority oneconsumers on January 15, 2004.Currently 2,600 priority oneconsumers and another 2,896consumers in priority two, threeand four are waiting for services.“It would be a bit of amisnomer to say that [prioritytwo/three/four consumers] areon the VR waiting list, becauseit is highly unlikely that we willbe able to provide them withtraditional, full VR services,” saidBridges.According to Bridges, thewaiting list is due to several yearsof flat funding from the federalgovernment, coupled with risingcosts in post-secondary educationand healthcare for staff.Historically, a waiting listfor VR services goes back as faras 1993 (fiscal year 1994) whenthe priority categories were firstestablished. “Under federalregulations, we were instructedto establish a priority for serviceand a waiting list when we findourselves in a situation of notbeing able to serve all eligibleconsumers,” said Bridges.Between 1994 and today,categories were progressivelyclosed for services, starting withcategory four, and put on a waitinglist. When fiscal year 2004 startedin October 2003, VR continued tobring in priority one consumersuntil January 15 when the waitinglist was implemented. FromJanuary 15 through August 15, noone was taken off the list. SinceAugust, 300-600 consumers havebeen taken off monthly.The effects of the waiting listhave made a significant impact onpeople with disabilities and serviceproviders throughout the state.An office of empty chairsFive years ago when he openedOpportunity Partner’s office at theBloomington Workforce Center,Ray White described the office as“bustling” with a steady stream ofconsumers referred by VR. As asupportive employment vendor forVR, Opportunity Partners providesthe employment counseling andjob coaching necessary to getconsumers back in the work force.When the waiting list wasimplemented for VR services,White witnessed a dramatic dropin activity. “It was a slow processand it just continued throughoutthe year until finally, when Iwould walk into the office in themorning, the chairs where clientsused to wait to see counselorswere vacant,” he said.White is very concerned aboutthe lasting ramifications causedby the waiting list. “The waitinglist discourages applicants. Theconcern is there are individualsout there that are not accounted forwho will not receive assistance.When they hear that there is awaiting list, and that they mightnot even get served, they think,why even apply?”The gap in employment historyis a typical barrier to employment,said White. The waiting listincreases that gap. “As clientswait, their job history becomesextremely damaged. This is reallygoing to hinder serving clients,” hesaid.The waiting list alsoexacerbates emotional barriers toemployment. “[It] depletes thepositive energy and motivationneeded for a successful job-hunt.Those with mental illness likedepression can be affected in avery negative way. A lot of thefolks coming to us for assistancehave a motivation problem, andwe have to fire them up and reallycreate an interest in where theywant to go, where they want tobe. Without that help, this reallydoubles the [negative] effect,” saidWhite.White says that the waitinglist has forced his organizationto think creatively on how it canmeet the needs of the persons withdisabilitie. One of the servicesOpportunity Partners now offers isa private pay option for supportiveemployment. Five families haveopted for this service and twojob placements were made fairlyquickly.“[The waiting list] is going tomake agencies like ours shuffle,reorganize and maybe come upwith some different programs,”said White.Mayo Makes AdjustmentsRachel Scanlan hasalso reshuffled the way shedoes her job. As VocationalCase Coordinator for MayoMedical Center’s Brain InjuryRehabilitation and ResearchPrograms, Scanlan’s work hasalways been tied closely with VRservices.Typically, Scanlan getsinvolved with consumers early intheir rehabilitation process, longbefore they are ready to go backto work. By getting involvedearly, she helps shape the therapyprocess to meet the employmentneeds of the consumer.Many of Scanlan’s consumersdo not have a job to go back to, orthe job they had was filled due tothe length of their absence. Thispage 8is where community supports arecritical. One of the most importantservices Mayo accesses throughVR are the work trials or “job tryouts.”“It’s an opportunity for peopleto go out and work a job for ashort period of time with theassistance of a job coach. It maybe an area of interest, or it may besimilar to a former job that theyonce held and they wanted to seeif they did indeed still have theskills. It’s part of the evaluationphase, so an employer is notobligated to hire them, so there isno pressure there. If the persondoesn’t do well, it’s okay becausethey didn’t actually go out intothe real world of work and burna bridge by being terminated orhaving other problems,” saidScanlan.Because of the closeconnection to VR, Scanlan’s workhas been dramatically affectedby the waiting list. “We havepeople that have gone throughour program and are all geared upto work, but need more support.They need some evaluation orwork trials or they might needsome training. But when thatresource isn’t there, there is a hugegap. So it’s changed the way I domy job. As soon as I’m seeingpeople, even as early as the initialconsultation, I’m getting them setup with VR. I have to explain,well, you’re not ready to work,you’re not really ready to do thesevocational things, but because ofthe waiting list, I need you to setup a meeting [with VR] and we’llgo through the intake together,”she said.Scanlan has also relied moreheavily on county servicesas a result of the waiting list.However, Minnesota counties arelimited in what they can fund, andwaiver programs aren’t of helpto people that are not eligible forMedicaid or public assistance.“It is very confusing for folksand cause us a great deal of stressas well, partly because the waiverprogram is supposed to be thepayer of last resort. VocationalRehabilitation is supposed to payfor the evaluation, and you can’tuse waiver dollars until that’shappened. If you can’t get that tohappen, people are going withoutservices and that’s been frustratingfor a lot of folks,” said CharityFloen, home and community careprogram manager for OlmstedCounty, where the Mayo MedicalCenter is located.The importance of advocacyScanlan, White and Balken allstress the importance of speakingWAITINGon page 9

WINTER 2004/05page 9WAITINGfrom page 8up.“This is important stuff. Theseare people that want to go backto work, people who need to goback to work. These are youngpeople – people who should not besitting for the next several yearsnot working,” said Scanlan. Shepractices what she preaches, andhas been involved in advocacyfor VR services at the local andfederal level.Scanlan is thrilled with theincreased level of responsefrom her consumers. “I’ve seenpeople that probably never wouldhave been active in voicingtheir concerns, talking to theirlegislators. We encourage peopleto do that. I think it often carriesso much more weight than me asa professional saying ‘you need tofund this, we need more money.’There’s more power when a personsays ‘hey, I want to work, I’mready to go, I need this service, butit’s not there.’”White encourages involvementby urging consumers to get on thewaiting list. “Whenever I get aphone call about services, I ask[the consumer] to please, pleaseput their name on the list, becausethey never know when somethingmight come along. Do whateveryou can, keep stirring the pot, keepthings in motion and don’t quit.”Balken has gotten involvedby attending the Brain InjuryAssociation of Minnesota’Legislative Home Visit inhis district. “I sat next to myrepresentative during the meeting.He couldn’t believe what I wasgoing through,” he said.White worries about the longtermeffects the VR waiting listwill have on society. “I can’t helpbut believe that if these peoplearen’t being served somehow,someway through the state ofMinnesota, it’s going to comeout some other way. Either theywill end up on the streets, in thehospital, in mental institutions orin prison. I just see the costs beingincurred elsewhere. We all havelimitations and assets and skills.If we’re not going to be protected,what does this mean for society asa whole?”“If you don’t say something,funding for VR and services like itwill go away,” said Scanlan.HEADLINESTips for Conquering the Waiting List Woes1. Get on the List! Don’t let the thought of a waiting list discourageyou from applying for vocational rehabilitation services. Makesure that you document any deficits or barriers to employmentbefore attending the intake meeting, so that you can clearlyarticulate your needs.2. Help create a demand for service. If you don’t qualify forpriority one, make sure that you are categorized as two, three orfour and put on the appropriate list. Your presence on the waitinglist demonstrates a demand for services.3. Become a Citizen Advocate. Contact your state and federallegislators and share your story. Write letters, make phonecalls, send emails, and if possible, arrange in-person meetings.Hearing from professionals in the brain injury field will nevercarry the same power with lawmakers as hearing a personalstory from their constituents. Contact Shannon Robins at theBrain Injury Association of Minnesota for more information atshannonr@braininjurymn.org or by phone at 612-378-2742, or1-800-669-6442 in greater Minnesota.4. Contact a Resource Facilitator at the Brain Injury Associationof Minnesota for assistance. They can help problem-solve andconnect you to other resources in your community. Call thephone numbers listed above and ask for the Resource Facilitatorthat serves your area of the state.5. Volunteer. Volunteering can help you build up marketableskills, provides a valuable source of feedback about your jobperformance, and allows you to “test the waters” for returning towork. Check out Volunteer Match at www.volunteermatch.org.Don’t want to hassle with a volunteer search over the internet?If you live in the Twin Cities Metro area, contact the VolunteerResource Center at 612-379-4900. For volunteer opportunitiesat the Brain Injury Association of Minnesota, contact KimberlyFerencik at kimberyf@braininjurymn.org or at the phonenumbers listed above.

HEADLINES WINTER 2004/05WALK FOR THOUGHTfrom page 1Association’s growing capabilitiesto reach a broader audience.The Dragonfly Clan, leadby Team Captain Tracy Winkel-Johnson, held to her promise tobecome the top fundraising teamfor 2004. The Dragonfly Clanraised over $5,100.“My inspiration for fundraisingfor the Walk for Thought wouldhave to be my brother, Steve,who we lost to a brain injury.Participating in the Walk, reallythrowing myself into it, seems likea good way for me to positivelyhonor my brother’s memory andkeep his spirit alive while alsodoing something to help others,”said Winkel-JohnsonTwo teams raised over $3,000:Region’s Hospital and KeepingAhead. Craig’s Cracked Cranium,the Mindful Mayo Walkers, Spinto Win, Stampeding Turtles, TeamEclectic, Team Nichole, TeamOttar and the Montes are teamsthat raised over $1,000.Top fundraising individualswith over $500 a piece includeKristi Buschke, Byron Wills,Deborah Wagner, Craig Martinson,Sue Winkel, Tracy Winkel-Johnson, Tom Bang, Mike Carter,Sue Larsen, Denny Anderson,Judy Vallancourt-Yerhot, TerrySandstrom, Shannon Robins,Connie Schmitz, Tawnya Panek,Kathy Puetz, Sharon Christensenand Amy McVary.All proceeds from the walkwill directly benefit the BrainInjury Association of Minnesota’smultiple services and programsthat serve persons with braininjury.Picture galleries from thisyear’s walks in Phalen andBlackduck, including teampictures from the Phalen walkare available on the Associationwebsite.Thanks to our participants,sponsors, volunteers, staff, WalkCommittee and board of directorsfor their support and commitmentto bring hope, help and a voiceto the 94,000 Minnesotans wholive with a disability due to braininjury. The Walk would nothave been as successful withouteveryone’s involvement. Thesteps we took during the Walkfor Thought will help thousandsof Minnesotans affected by braininjury achieve even greater stridesof their own.Watch the Association website, www.braininjurymn.org, inthe coming months for details onnext year’s walk.page 10picture by Sharon RolencAlicia Warden, senior at Blackduck Highschool, organized the Blackduck Walkfor Thought, under the guidance of retired Blackduck High school teacher ShirleyDeno.picture by Carrie StewartVolunteers of all ages turned out at the walk to help with set-up, registration,pictures and the water station.Special Thanks to Our Sponsors!pictures by Sharon RolencWalkers take a break from the 2004 Walk for Thought to pose for a scenic pictureWith Additional support from:American Family InsuranceIntegrity LivingMiller-Dwan Rehabilitation CenterMeshbesher & SpenceFaribault FoodsBlaine Chiropractic CenterBerger AlliedRSAHauer, Farigone, Love, Landy & McEllistrem,PATBI Metro Services (a service of OpportunityPartners)Regions Hospital/Health Partners

WINTER 2004/05page 11HEADLINESLEGISLATIVE CORNERKeeping up to date with public policyThank you to all who participated in Legislative Home Visits!By Shannon RobinsThe Brain Injury Associationof Minnesota would like to extenda special thank you to those verydedicated people who helped tocoordinate and host LegislativeHome Visits in their communities.Thank you also to those whotook the time to participate andcourageously share their stories atthe Legislative Home Visits.The information gathered fromparticipants at Legislative HomeVisits creates the foundation forthe Brain Injury Association ofMinnesota’s Legislative agendafor the upcoming session while thecoalition work that the Associationis involved in helps to focus andshape the policy initiatives.The people who came tothe Legislative Home Visits(952) 985-0672and shared their stories andperspectives were repeatedly toldby legislators across the state thatthe input they received at the Visitswill greatly impact the legislators’ability to protect the servicesand supports that are importantto their constituents whose livesare impacted by brain injury.However, the elected officials alsowarned participants that they needto consistently and continuallyspeak-up about the decisions beingmade at the Capitol during session.Based off of the informationgathered at the Legislative HomeVisits and through coalitioninvolvement, the Brain InjuryAssociation of Minnesota’slegislative initiatives will addressconcerns raised about a broadspectrum of issues.These issues include thingslike: Vocational RehabilitationIf your family currently receivesPCA (Personal Care Assistant) or nursing services,now your staff can start working for better pay.Our home care company offers the highest pay forPCAs, RNs and LPNs in Minnesota.and job supports, MedicalAssistance (MA) Home andCommunity Based Waivers(Traumatic Brain Injury (TBI)and Community Alternatives forDisabled Individuals (CADI)Waivers), passage of a primaryseatbelt law, restoring the SpecialEducation funding, limiting theuse of Aversive and DeprivationProcedures and the use of lawenforcement in schools, repealingthe co-payments for MedicalAssistance prescription drugs andmedical visits, and repealing the$500 limit on Dental Servicescovered under MA.As Minnesota enters anotherlegislative session with a projectedbudget deficit of over $700 millionbefore inflation (about $1.4 billionwith inflation), the disabilitycommunity will be targeted forfurther cuts and restrictions ineligibility for the services andsupports that are needed. Morethan ever, we need to be vigilant inour efforts to protect those servicesand supports that are state fundedand continually educate ourelected officials about the benefitsthat these services provide.As our elected officials arefaced with the daunting task ofbalancing a continually decreasingbudget with steadily increasingdemands, we need to rememberthat they are humans and canonly protect what they are ableto make the case for to otherlegislators and the Governor. Theother thing to keep in mind is thatthe Association, along with otherdisability advocates, will have toconcentrate on highlighting andsupporting the programs that helpthe state save money.The Association is dedicatedto keeping its Citizen Advocatesinformed of what issues are beingdiscussed, as well as when andhow to make an impact at crucialtimes during this session. If youhave not already done so, pleasesign-up to be a Citizen Advocatetoday so that we can keep youinformed.Communication with CitizenAdvocates is primarily donethrough email, so if you do nothave email access, we will stillkeep you posted during ActionAlerts, but will not be ableto update you weekly. Pleasecontact Shannon Robins today atshannonr@braininjurymn.org or612-378-2742 to learn more aboutbeing a Citizen Advocate.Member ofWE PAY$11/hr for PCAsRN up to $26/hrLPN up to $19/hrWe offer: $100 sign-up bonuses for the families $100 referral bonusWe have experienced PCAs, RNs and LPNs availablefor a variety of your staffing needs!For additional information, please contact our offi ce at:(952) 985-0672Myrna Yenter, MS, LICSWMental Health Services1719 Kathleen DriveNorth Mankato, MN 56003Phone and fax: 507-345-5281Myrna has had extensive experiencewith survivors of traumatic brain injury andtheir families. She has experienced TBIin her immediate family.Myrna does complete mental health servicessuch as counseling for couples, families,for anxiety and depression.

HEADLINES WINTER 2004/05Make Room for Creative Errors:Aphasia, Poetry and Making Sense of it Allpage 12By Elizabeth Sowden“Why this distracted talk?It’s not my fault I rave.You did this.Do you approve of my lovemadness?”—from The Essential Rumi,translated by Coleman BarksThis stanza comes from Rumi,a legendary Sufi poet who livedand wrote in the thirteenth century.Rumi addresses God in this stanza,but for persons with aphasia andtheir family members, these wordscan be all too familiar. The wordscoming out of an aphasic person’smouth may be long strings ofmeaningless sentences, or theymay be short clipped phrases thatcan signify any variety of actions,statements, commands or desires.Caring for a person with aphasiacan seem like a surreal nightmare.Can he understand a word I say? Ihave no idea what she wants; doesshe even know? It’s critical forfamily members of a person withaphasia to remember one thing:though the words may not comeout right, having aphasia does notentail madness.Aphasia is a condition thatresults from brain injury, usuallyin the aftermath of a stroke.The portions of the brain wherelanguage and linguistic abilityare stored are injured, creatingdifficulty with language, includingspeech, comprehension, and theability to read and write. DonMacLennan, Speech Pathologistat the Minneapolis VA MedicalCenter, defines aphasia as “adisorder of language.” Injuries thatcause aphasia usually leave thefrontal lobe intact. “The frontallobe is like a ‘conductor,’ on atrain. It interacts with memoryand controls attention. [Peoplewith aphasia] can understandfunctionally,” said MacLennan.There are three main typesof aphasia—fluent, non-fluent,and global. Fluent, or Wernicke’s,aphasia is exactly what it soundslike: a person with fluent aphasiacan speak in long, flowingsentences that have correctgrammatical structure, but thewords the person uses mightbe made up, nonsense words.Persons with fluent aphasia areoften completely unaware of theirdifficulties.Non-fluent, or Broca’s,aphasia, is the exact oppositeof fluent aphasia. Persons withnon-fluent aphasia speak in twoword phrases, such as “walk dog,”which can mean “I am going totake the dog for a walk,” “You gotake the dog for a walk,” or “thedog is walking.” Persons with nonfluentaphasia are often very awareof their difficulties, which can bevery frustrating for them.Persons with globalaphasia have severe difficultieswith communication, and arevery limited in their ability tocomprehend and speak. There isalso what is called anomic aphasia,which means that the individualhas difficulty remembering certainwords, particularly the names ofthings.Additionally, there is Landau-Kleffner Syndrome, which is achildhood disorder that includesthe gradual or sudden loss ofthe ability to understand anduse spoken language. Eightypercent of children with Landau-Kleffner Sydrome (LKS)experience epileptic seizures,occurring mostly at night. Manybehavioral disorders accompanyLKS, including hyperactivity,aggressiveness, and depression.LKS may also be referred toas Infantile Acquired Aphasia,Acquired Epileptic Aphasia, orAphasia with Convulsive Disorder.It’s overwhelming, right? Nomatter which one of these types ofaphasia your loved one has, youwill find it extremely challengingto care for him or her. The loss oflinguistic ability is a devastatingone. We all too often judge theintelligence of others based ontheir language skills, which, asyou may be discovering now, isinaccurate.“Language is a tool. It’snot absolutely required. Peoplewith aphasia usually have goodmemory and reasoning…aphasicpeople know what the point is,”said MacLennan.Language is one of thosethings we take for granted—oneof those things we hurt badly foronce it’s gone, one of those thingsthat causes us to grapple withmeaning as we recover from theshock of losing something so vital,something so inherent within us.We may not realize all the thingswe do with language until we can’tdo them any more: the comedianloses his ability to tell jokes,the cynic her ability to processsarcasm, or the writer his ability toturn the blank page into a story orpoem with a life of its own.We may not realize all the things we do with language until wecan’t do them any more: the comedian loses his ability to tell jokes,the cynic her ability to process sarcasm, or the writer his ability toturn the blank page into a story or poem with a life of its own.You have lost somethinghere too: your loved one’saccomplishments you once tookpride in are no longer possible. Apart of the way you interacted witheach other, such as humor, is nowgone. Perhaps this change placesa strain on your relationship. Youmight be thinking, “What do wedo now?”Perhaps the most positive stepyou can take is to view your lovedone’s aphasia as a gift. In heressay, “Celebrating Aphasia PoetryPower,” Chris Ireland, a poetwho has aphasia, writes “BeforeI published [my poetry] in thejournal, I discussed with the editor.She was correcting. I explainedthat these are not spelling errors,but ‘creative errors’ to showaphasia.”Here’s an example of oneIreland’s creative errors: ‘insidemy own rhymns/internal rhymn.’In the word ‘rhymn,’ there’sa clear fusion of the words‘rhyme’ and ‘hymn,’ whichcan be interpreted in indicate acelebration of poetry, of words,and of ‘creative errors’ that comefrom aphasia. The aphasic mind isstill a creative mind, a mind stillcapable of profound meaning.Also, just because somethingdoesn’t make sense doesn’tmean it’s not beautiful. In “TheCreative Process: Reflectionson the Invention of Art,” thepoet AE Housman wrote: “EvenShakespeare, who had so muchto say, would sometimes pourout his loveliest poetry in sayingnothing…[it] is nonsense, but itis ravishing poetry.” Learn to findbeauty in the nonsensical and thedisorderly. Make room for creativeerrors in your life.According to MacLennan, theone of the best things you can doif you feel you’re having difficultyaccepting and understanding thechanges that come with aphasiais education. Learn all you canabout aphasia, be creative withcommunication techniques, andremember that when your lovedone makes an error in speech, donot correct him, for if he has nonfluentaphasia, it will only frustratehim, and if he has fluent aphasia,he may not understand why youare correcting him.For more information,check out the National AphasiaAssociation’s website, www.aphasia.org. This website hasarticles, information on research,and contains information inSpanish, Haitian-Creole, Russian,and Chinese. “Aphasia Inside Out:Reflections on CommunicationDisability” has essays written byindividuals with aphasia, includingthe one by Chris Ireland. It’s anenjoyable read, and it’s full ofinformation that will provide youwith very useful insight.“Take language out of theequation,” said MacLennan, andyou’ll see the same smart, funny,caring person you’ve alwaysknown.The Write Aid Encourage persons withaphasia to write. Thoughwriting may be difficult now,encourage them to view it ina new way—allow them to letpoetry show them what theyare capable of. (According toMacLennan, “It can’t hurt. Itmight not be therapeutic …butit can’t hurt.”) Children with Landau KleffnerSyndrome who learned towrite before the onset of LKSmay still be able to write, soencourage your child to writeas much as possible to alleviatesome of the frustration yourchild may have with oralcommunication. Keep a journal of your ownfeelings, frustrations anddesires. It’s your privatewriting so don’t hold back.Your feelings are valid too—once you get them out, you’llbe able to deal with them and itwill be better for you and yourloved one. Try writing your own“aphasia” poetry with creativeerrors—write down any wordthat comes to mind, even ifit’s a nonsense word. Do thisnot only for the satisfaction ofcreating but also to help youget used to the idea that notmaking sense isn’t a bad thing.

WINTER 2004/05page 13HEADLINESBlood test being developed for TBI diagnosisBy Kelly ParadisAny fan of science fictionknows that in the future, doctorswill be able to quickly scan theirpatients with a handheld tool anddetermine instantly what is wrong.In the case of traumatic braininjury, the future may be rightaround the corner. Researchershave been developing a simpleblood test to confirm that someonehas sustained a traumatic braininjury (TBI) and even the degreeof injury.When the brain is injured,scientists are discovering that thereare distinct protein patterns thatemerge around the injured tissue.Researchers at the University ofNorth Carolina at Chapel Hillfound that the scar tissue thatforms on the brain or spinal cordafter an injury prevented healingand regeneration of cells.This scar tissue contains aprotein called palladin, whichUNC researchers first identified in2000. Palladin seems to controlthe way that cells regenerate in aninjured area of the brain and alsoserves as a marker pinpointingthe injured area, with more cellsshowing up around the damagedarea.One challenge of TBI isidentifying it quickly so thatthe injured person is given theappropriate treatment. Currenttests using computed tomography(CT) scans and magneticresonance imaging (MRI) can beexpensive and inaccurate. Plus,they may not be readily availableto some patients, depending wherethey live.While testing for brain injurythrough protein markers wouldbe a welcome addition to anytraditional medical practice, itbecomes a lifesaving tool in thehands of a field medic in themilitary. Brain injuries are anunfortunate reality in military lifeand being able to quickly identifyand treat wounded soldiers andcivilians can mean the differencebetween life and death. This isespecially true in triage situationswhen limited resources meanschoosing who will get medicalhelp immediately.Banyan Biomarkers (www.banyanbio.com) is one group thatis focusing on developing fieldtesting for the military. Accordingto Banyan’s website, nearly half ofall combat deaths are the result ofhead injuries. The improvementsin soldier body armor and medicaltreatment, while increasing thesurvival rate of the soldier, hasalso led to an increase in TBIamong the wounded. Injuriesthat would have been fatal in thepast no longer are, but many areleft struggling with the lingeringeffects of brain injuries.According to the Center forDisease Control, at least 5.3million Americans are living witha disability from a TBI. Over300,000 sports-related braininjuries occur each year. Many ofthe symptoms are subtle or don’tappear right away. Often theeffects of the injury make it hardfor the person to realize or admitthat they are having a problem thatmight be brain-related.Some common symptoms,like feeling tired, unmotivated andhaving a hard time sleeping arealso seen in people experiencingdepression or other illnesses.Tools like the protein-detectingblood test should quickly clearup any confusion by identifyingwhether it is a brain injury at faultand giving persons with braininjury the diagnoses they need tomanage their recovery.Interesting inBecoming aVOLUNTEER?CallKimberlyFerencik at612-378-2742 Call us at 763-427-8888 www.soucielaw.com

HEADLINES WINTER 2004/05page 14Association Volunteers contribute over 3,000 hours in 2004The Brain Injury Associationof Minnesota is the only nonprofitorganization in the state dedicatedsolely to serving the needs of the94,000 Minnesotans who livewith a disability due to braininjury. Our mission is to create abetter future though brain injuryprevention, research, educationand advocacy.In order to fulfill its mission,the Association relies on a greatgroup of volunteers who work ina variety of roles, from translatorsto receptionists, event set up todata entry. Volunteers contributedmore than 3,000 hours in 2004!The following people havewarmly contributed their timeand talent to support persons withbrain injury and their families in2004. For their continued support,the Brain Injury Association ofMinnesota sincerely thanks ALLof them:Kathy AndersonSheldon AndersonMary Jo AvendañoJessica AwaiganeJudi AzarOtto BangHeather BarberThe Beck FamilyPatricia BergstromWyatt BienfangRichard BloomAnnemarie BolattoDave BrackettKristi BrackettClaire BrandesSydney BrandesKen BrittonDavid BulfordEmily CarlsonNancy CarlsonErwin ConcepcionNeal CrispDART TransitNicholas DennenShirley DenoDenise DillonJeanne DirksonCharles DugganSherry DvorakChar ElioffGale ErdmannCaroline EstradaSusan ForsythRosemary FroehleBarbara FultonJennifer GeisenSarah GillTina GjerstadAmy GodeKim Gulbransen HearstJob GuzmánFloyd HaleJulie HartungJohn HelmersLaurie HelmersGretchen HelvorsonLeah HolmesNicole HolzworthBecky HooperDawn HoschetteJulie HudallaLyndsay HuntKim JahnkeLindsay JarombekBill JeronimusScott JohnsonWillis JohnsonAneisa JonesKim KangRobert KarolJoann KenersonJanis KeyesTodd KimlingerKathryn KohnertHolly KostrzewskiAmanda KrieselJulie KrieselRob KrieselSusan KujawaHelp Persons with Brain Injuryand Their Loved OnesVolunteer to help with Brain Injury Basics ClassesThe Brain Injury Association of Minnesota is looking for a friendlyoutgoing person to assist with “Brain Injury Basics” (BIB) classesby preparing refreshments, helping with room set up and greetingparticipants as they arrive at our office. This volunteer is key toproviding a welcoming, helpful environment for class participants,many of whom are persons with brain injury and their familymembers. We need a volunteer from 4 pm – 6:30 pm the thirdTuesday of every month and ask for a six month commitment.This is a great opportunity for youth 14 or older or for a parent andchild (age 7+) to volunteer together. There is free parking and weare near a bus route. The Brain Injury Association of Minnesotais committed to providing a friendly, supportive, professionalexperience for its volunteers. If interested, contact the VolunteerCoordinator at 612-378-2742 or kimberlyf@braininjurymn.org.For a listing of other volunteer opportunities, visit the Associationwebsite at www.braininjurymn.org.Ellen KuschkeJim LandRobin LandySusan LarsenGwyn LederToni Lee-JohnsonSue LeporeRichard LordJohn LuciaGail LundeenCarrie MacNabbJacqueline MartinCraig MartinsonMary MeesterSue MeserowMargo MilletteMargaret MossAdauto MouraoRicardo MouraoJennifer MundlGreg MurreyJoe MyersDianne NausCarrie NelsonNikki NelsonJoan NickellsStanley NickellsShalonda NickensLaurie OlivierLori OlsonMark OrlandoJennifer OschwaldKelly ParadisAnnette PearsonCheryel PerezIvy PetersonRuss PhilstromAlan PorcielloRADD BMX & Skate TeamJordan RaneyRobert ReedySandra RobertsonJon RoeslerKeegan RolencTimothy RosePatricia RudolphWISH LISTAngela RutgersonSalwa SalahBrian SammonLaVonta SandersTerry SandstromNatalie SchmitDave ScottTerri ScottKate ShannonJudy SiemsSingle Volunteers Twin CitiesElizabeth SkinnerLinda SlatteryRich SlatterySandra SmithJulia SochaDarshan SoskeElizabeth SowdenJayne SpainKris StapletonCarrie StewartMike StrandTBI Metro ServicesJulie TestaTim TiniusTerri TraudtMalai TurnbullRobert Ver StraetenVET SchoolMerrie VisteAlicia WardenPatty WhiteHeidi WilcoxTanika WilliamsDeb WilliamsonAndrea WingetCaroline WingetDavid WingetPat WinickBen WolfeJudy YerhotJeff ZinnOur sincerest apologies to anyonewhose name we accidentallyomitted.We welcome a variety of in-kind donations at the BrainInjury Association of Minnesota. The following are afew of our immediate needs: IBM compatible computers – 500mhz or better,256RAM or better, 6 gig hard drive or better Computer accessories including anti-glare screens,keyboard trays, wrist rests and power strips Scanners Laser printers Copier Tickets to local events (sports, theater, music, etc.)to use as volunteer thank you giftsIf you would like to donate these or other items, pleasecontact Mark or Kimberly at 612-387-2742. Thanks!

WINTER 2004/05page 15HEADLINESSPONSORSAcknowledgement of Donations: August 16 - November 15, 2004MEMBERSDONORSProWorks, Inc.Mr. Martin AllenMr. James AshleyMs. Deborah AurianivarMs. Linda BeaucheneMs. Kellie ConlanMr. Steven GrohoskiMrs. Donna JohnsonMs. Judy KlevenMr. Mark OlsonMr. Mica SchaffranMs. Melanie SchroederMr. Dave Scott, TBI MetroServicesMrs. Elizabeth ShippeeMs. Kristina TierneyMr. Glenn TridgellDr. Gale Valtinson Bethesda RehabilitationHospitalDr. Nancy Wagner, Gillette Children’sSpecialty HealthcareMs. Marlys WagnerMs. Julie WruckCORPORATIONSWestern Insurance Agency, Inc.FOUNDATIONSUPS FoundationMedtronic FoundationDONATEYOUR CAR!Mr. Jim BeckerMr. & Mrs. William CampbellMs. Sherrie Fischer-WestMr. & Mrs. William FoxMrs. Marjorie GoldbergDr. Eric GoullaudMs. Jan HansonMr. & Mrs. Richard HowellMr. Howell JohnsonMr. Leroy MatherMr. Jim McArdellMs. Susan MencelMs. Sarah MoellerDr. & Mrs. John NilsenMs. Anne OtteMr. & Mrs. Frank PlantMr. & Mrs. Steven SchachtmanDr. Tim TiniusUnknownMs. Mary Ellen VetterMr. & Mrs. Fred WeinerORGANIZATIONSCommunity Solutions FundUniversity of IllinoisTRIBUTESIn honor of the 50th Anniversaryof June & Pete MedernachMr. Matthew MorelliTurn your used car into cashfor the Association.For more information,visit www.donateacar.comor call Mark at 612-378-2742.Name:Address:City:State, Zip Code:Telephone:Email: Individual: $35 Limited income: $5-15 Professional: $50 Benefactor: $250I am (please check one): A person with brain injury Family member/friend ProfessionalSign me up for: Headlines Online, a freeelectronic newsletterpublished bi-weekly.Payment Method Check payable to Brain Injury Association of Minnesota Credit Card: Visa MastercardCard Number:Expiration Date:Signature of Cardholder: Non-profi t organization: $250 Corporation: $500 Individual Lifetime: $1,000 Other: $Please note that the process takes up totwo weeks and the Association cannotstore your car.Complete form and send to:Brain Injury Association of Minnesota34 13th Ave NE, Suite BOO1, Minneapolis, MN 55413

HEADLINES WINTER 2004/05Judging by Matt’s strides, there's no telling. Physical therapy gave him the power to takethe first step beyond a severe brain injury. But it's extraordinary devotion that restored hisultimate source of strength – his faith. And on the road to recovery, that’s a force wedraw from every step of the way.page16MEDICINEfrom page 6the most common. Youshould speak with yourtreating doctor about anyconcerns related to themedication routine currentlybeing used. If there is stilla concern your doctor canrefer you to a physicianknowledgeable in braininjury treatment and the useof these medications.Dr. Kenneth R. Britton,DO, is the president andfounder of Britton Centerfor Spine, Sport, andNeurologic Rehabilitation.He is board certifi ed inphysical medicine andrehabilitation, and his areasof specialty include physicalmedicine and rehabilitationand geriatrics. Dr. Brittonserves as medical directorfor Bethesda RehabilitationHospital/RehabilitationCare, Red Wing HealthCenter, Britton Center,and is the interim medicaldirector for Courage Center.Dr. Britton currentlyserves on the Brain InjuryAssociation of MinnesotaBoard of Directors.Estate planning provides long-term sustainability for societyBy Ottar SchmitzMy wife and I are expectingour first child, which is veryexciting. We are entering a strangeand foreign new world of changingtables, bassinets, car seats, and astrange clothing article called a“onesie,” which is essentially alarge sock with arms.My wife is enthralled withmany of these accoutrements whileI, true to the cliché, have beenthinking primarily about money.How are we going to pay for allthese things? Day care costs howmuch?!? Per day?!? If you arelooking for an adrenaline rushakin to bungee jumping, check outthe financial cost calculators thatgive future predictions for collegetuition.Luckily I am still filled withendless optimism for our futurechild and feel quite confidentin the academic and athleticscholarships that will undoubtedlycome our way. Why wouldn’t ourchild be exceptional in every way?And so forth.Hidden among all of thesenew responsibilities to consideris the matter of our estate. Onemust think of such things whenbecoming a parent, right? Mywife and I are modest folks,but nevertheless we want tobe responsible parents even inthe event of our very untimelypassing.Furthermore, despite all ofour newfound desire to provideour new child with every possiblecomfort and opportunity, we alsowant to pass along an importantvalue that we share: the supportof non-profit organizations thateffectively meet our paradigmfor a caring society, a healthyenvironment, and a peacefulworld.So in our estate planning(such as it is), we are directing apercentage of our net worth (suchas it is) to several organizationsthat we feel are important to usand the long-term sustainability ofour society.Despite the above loftyaspirations, estate planning feelsa bit like mowing the lawn orwashing windows: you knowyou should do it one of thesedays, but it’s not much fun toconsider doing right this minute,especially since it involves touchysubjects including that of yourown mortality. However, just withmany other chores, it feels betteronce it’s done!Lastly, please consider theBrain Injury Association ofMinnesota when doing your estateplanning. We have establishedourselves as one of Minnesota’smost effective non-profitorganizations and the services andeducation we provide are having apositive effect on our communityby increasing the quality of lifefor those living with disabilitiesand increasing the awareness andpreventive measures that will helpavoid brain injuries in the future.We are making a difference!Ottar Schmitz is the DevelopmentCoordinator for the Brain InjuryAssociation of Minnesota.