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PublicationsManagerTerrySchenkerManagingEditorGayFalkowskiEditorialCommitteeKaseyMinnisBrieaCuringtonNatalieBlakeJayHassContributingWritersAlissaAydenHildyBergerJoanneFortunatoChristopherHudspethMariaMilazzoRNMSPNP-CMitchellSturgeonBenThrowerM.D.EllenWhippleGuthriePharm.DMollyWilliamsTALKBACKTALKBACKWeWelcomeTopicSuggestionsforFutureIssues.Yourcommentsabouteachissueareimportanttous.Emailcommentstoeditormsfocus.orgorwritetoEditorMSFocus6520N.AndrewsAvenueFortLauderdaleFL33309 MSFocusispublishedquarterlyinenlargedtypeforthebenefitofourreaders.Audioversionsoffeaturedarticlesareavailableforlisteningordownloadonwww.msfocus.orgclickOnDemandAudio.Backissuesareavailableonlineatwww.msfocus.org.MSFocusisafreepublicationforindividualswithMStheirfamiliesandothersinterestedinMS.StatementofPurposeThepurposeoftheMultipleSclerosisFoundationspublicationsistoempowerthoseaffectedbyMSwiththeinformationnecessarytomakethemostcompleteandeducateddecisionsconcerningtheirhealthcare.Wedonotadvocateorendorseanyspecifictreatmentshealingmodalitiesorpractitioners.Thematerialpresentedinthispublicationisforinformationalpurposesonly.Forspecificadviceconsultahealthcareprofessional.MSFdoesbelievethateachpersonhastherighttochoosethetreatmentstheyfeelarebestandthereforeactsasasourceofinformationprovidingreferralstolocalresourcesandpartnershipinproblemsolving.MSFOnTheRoad52RegionalEvents56FromtheLibrary57MenMS60UncleSamsHelpingHand62MSNews63QuestionsAnswers66FEATURESGrowingUpwithMSTheSocialandCognitiveChallengesofPediatricMS10MultipleSclerosisandSchoolConcerns15PediatricMSSimilarbutDifferent23ATeensShatteredDreamsRestored26CaregiverCornerFendingoffFrustration31CruisersRideaWaveofHealthandWellness40NationalMSEducationandAwarenessMonth52CONTINUINGTOPICSAsWeSeeIt8MSFMailbox9SupportGroupSpotlight18PSWhatsNew36FacebookFeedback39UpdatesbythePharmacist46MSTech10149 8MSFocusSpring2014ManagingtheMSFaffordsusawonderfulopportunitytoengageinrelationship-buildingonanearlydailybasis.WithregardtoindividualsandfamiliescopingwithMSweareabundantlyawareofvariouscircumstancestheymayface.Thesecanappearasformidableasabrickwallattimes.Yetonoccasionsomeseeaglimmerofhopewhileothersaresuccessfultoonedegreeoranotherinovercomingadversity.WealsointeractwithmanywhoarenotpersonallyimpactedbyMSbuthaveacommitmenttofurtheringtheMSFsmission.Innoparticularorderwewishtomakeyouawareofjustafewofthosewhoaredeservingofspecialacknowledgement.DavidJourneyknowsadversitywell.DespitehavingdebilitatinghealthissueshimselfhehasbeenthecaregiverofhiswifeDianawhowasdiagnosedwithMSmanyyearsago.AwhilebackhewashospitalizedandtherewasnooneelseavailabletocareforDiana.Heconvincedthehospitaltoallowhertosharehisroomsothathecouldcontinuemeetingherneedsdespitehisownhealthissues.ThatsdevotionRexPetersonanoutdoorsmanwasdiagnosed12yearsago.Thoughrequiredtouseawheelchairheandhisfamilystillvisitvariousnationalparksinthespringandsummermonths.MShasnotstoppedhimfromenjoyinglifeparticularlycampinginthegreatoutdoors.LottikaGwynnMSFAmbassadorandsupportgroupleaderorganizedaninspiringeventinconjunctionwithNationalMSEducationandAwarenessMonth.MembersfromhergrouptoldtheirindividualMSstoriestoapackedaudiencethatcamefromthroughoutGeorgia.MindyEisenberganadaptiveyogainstructorforMSFsHealthandWellnessProgramhashadapassionforhelpingthosewithMSandotherphysicallimitations.ThroughherfundraiserYogaMovesMSMindyhasraisedapproximately180000inthelastfouryears.FrancineBregerhasdevotedthepast21yearsworkingtirelesslyasamemberofournationalcampaigncenterstaff.Sheisafamiliarvoicetoourmanydonorswhentheyrenewtheirannualsupport.At85shesourEnergizerbunny.Thesepeopleandamultitudeofotherslikethemrepresentthefaceofourcauseandmission.Theyhaveearnedourappreciationandwehopeyoursaswell.JulesKuperbergAlanR.SegaloffCo-ExecutiveDirectorCo-ExecutiveDirectorATipoftheHatisDefinitelyinOrderATipoftheHatisDefinitelyinOrder TheyAreNotAloneIwasdiagnosedwithMSnearlyfouryearsago.WhilevisitingmyneurologistIsawacopyoftheMSFocusmagazineandIbegantoreadit.Isentinasubscriptioncardandbegantoreceivethemagazineinthemail.IstillreadoverthearticlesIhavealreadyreadandtheyhelpmegetaclearerunderstandingofthedisease.TheygivemesomanyanswerstothequestionsIhave.Iama61-year-oldwomantryingtotakecareofthreespecially-challengedgrandchildrenandmyhusbandwhohascancer.SometimesIfeelsoaloneandsohelpless.Tryingtokeepahomeformyfamilyreallytakesatollonme.Pleasekeepupthegoodworkbymailingoutthosemagazines.TheyalsohelpmewithmydepressionandIdontfeelsoalone.Mrs.JonesLakeviewS.C.ThecolumnMenandMSinthewinterissuewrittenbyTimCarrcouldhavebeenwrittenbyme.ThoughIsufferwithataxiaIhavefacedthesameissuesasMr.Carr.Heisnotalone.Ihavereallyfeltevery-thinghedescribed.Itwasgoodreading.JohnLaneMarshallVirginiaLiftOpensDoorstoaSocialWorldIwouldliketosendahugethankyouforassistanceinhelpingtopayfortheinstallationofmypowerwheelchairliftformycar.WithoutyourhelpIwouldnothavebeenabletoaffordit.MyqualityoflifehasimprovedsomuchandIcanenjoymychildrensschoolactivitiesandothersocialeventswithouthavingtoworryaboutsomeonepushingmymanualchair.AgainthankyousomuchandkeepupthegoodworkMikeMonroeSeekonkMass.LaptopBringsHappinesstoEachDayIcantthankyouenoughforthegenerousgiftofthelaptop.Iwasandstillamexcitedaboutit.IappreciateitsomuchItwillcertainlybeusedeveryday.Itspeoplelikeyouthatmakeadifferenceandputsmilesonfaces.IjustwishIdidnthaveMS.Thankyouagain.Ifeelsohappy.SharonNewmanBabylonN.Y.LendingLibrarySurprisesIreceivedasurpriseinthemailonSaturdayabookIreportedhavingtroublerequestingthroughthelendinglibrary.Withitwasanotestatingthatyouweregiftingittome.IamsoappreciativeofthegiftandIwanttothankyoufromthebottomofmyheart.MelissaBondShallowaterTexasMSFocusSpring20149IfyouhaveanycommentsorquestionsfortheMSFtheycanbeemailedtoeditormsfocus.orgorwritetoEditorMSFocus6520N.AndrewsAve.Ft.LauderdaleFL33309 MSFocusSpring201410Childhoodandadolescenceisatimeforplayschoolandadventureformostyoungpeople.Foryouthwithachronicillnesschildhoodalsobringsotherchallenges.PediatricmultiplesclerosisMSisachronicdisorderwhichtargetsthecentralnervoussystem.MSmostcommonlystrikesindividualsbetween18and40yearsofage.Howevernearly5percentofpatientsarediagnosedpriortoage18.Themostcommonformtherelapsingremittingtypeischaracterizedbyrecurringepisodesofneurologicdysfunctionwhichareunpredictableinbothtimingandthespecificnatureofthesymptom.InadditiontothephysicalmanifestationsofMSthecognitiveandpsychosocialimpactsaresignificant.WewilldiscussissuescommontoyoungpeopleandfamilieslivingwithpediatricMS.WhathasresearchandpracticalexperiencerevealedaboutpsychologicaldistressandcognitivedysfunctioninchildrenwithMSandhowthoseissuesaffectthemThefewstudiesofpsychologicaldistressandcognitivedysfunctionsuggestarelativelyhighrateofimpactinthepediatricMSpopulation.Asmanyas50to60percentofteenswithMSshowedmildcognitiveimpairmentwhilealmostathirdofaffectedteenshavesignificantcognitiveimpact.Themostfrequentareasofimpairmentwerefinemotorcoordinationvisual-motorintegrationandspeedofinformationprocessing.YouthwithMSalsoexperiencepsycho-logicaldistresswithdepressionanxietyself-imagerolefunctioningandbehavioralchangesreportedinupto50percentoftheyoungpeople.Health-relatedqualityoflifeiscommonlyimpacted.YoungpeoplewithMSoftenexperiencefatigueandhavedifficultieswithphysicalcognitiveandacademicperformance.OftenyouthwithMSreportdecreasedparticipationinsportsandschoolactivities.Relationshipswithpeersandtreatmentadherencemaybeadverselyaffected.ThediagnosisofMSmaybringachangeinfamilyroutinesandrelationshipswithfriends.OftenkidswillexperiencechangeofidentityoncediagnosedwithMS.Theymayexpressfeelingsofworryabouttheirfutureaswellasworriesfortheirfamilies.WhatistherecommendedapproachtotreatingpsychosocialandcognitiveproblemsinchildrenwithMSAcloserelationshipbetweenthechildfamilyandcareproviderteamisimportantinmonitoringandtreatingthepsychosocialandcognitiveimpactsofMS.ItisimportanttorememberthattheneedsofayoungpersonwithMSwillchangeasheorshegrowsandmatures.WithmaturitycomesByMariaMilazzoRNMSPNP-C MSFocusSpring201411greaterunderstandingofthediseaseanditsconsequences.Foryoungerchildrenparentsorguardiansareresponsibleforthecaredecisions.Astheyoungpersonmaturesheorsheassumesmoreoftheresponsibility.PediatriconsetMSbringssignificantchallengesbecauseitaffectsadevelopingbrain.Neurocognitiveevaluationsidentifyareasofweaknessandstrengthaswellaschangeovertime.TheareaofcognitiverehabilitationinMSisgrowing.Workingwiththechildsschooltodevelopaspecificplanbasedonthechildsneedsisrecommended.TheNationalMSSocietyhastwoguidebooksavailableonespecificallyforschoolsworkingwithaffectedyouthandtheotherforfamilieswhenworkingwiththeschoolsystem.ThroughhighschoolstudentsworkwiththelocalschooltodevelopaneducationalplaneitheranIndividualizedEducationalPlanIEPorAccommodationsunderSection504inordertoplanforaccesstoschoolinaleastrestrictiveenvironment.Onceincollegestudentsworkwiththeschoolsofficefordisabilityservicestoreceiveaccommodations.Formoreinformationseethearticleaboutschoolaccommodationsonpage15.Psychologicalassessmentandon-goingsupportofthechildandfamilyarebeneficialespeciallyasneedschangeovertimeandthechildcontinuestomaturewhilelivingwithachronicillness.ProgramssuchastheTeenAdventureSummerCampLourieCenterforPediatricMSbuildrelationshipsandprovidesupportforaffectedindividualstheserelationshipsaremaintainedlongaftertheparticipantsreturnhomeaswellasincreaseperceptionsofsupportandqualityoflife.Participantsoftendescribetheseprogramsastheoneplaceintheworldwherepeopleunderstandme.ArechildrenespeciallyadolescentswithMSatagreaterriskforbehavioralproblemsThereislimitedresearchintheareaofMShoweverwecanlooktootherchronicdisordersinchildrentounder-standtheimpactofillnessonbehavior.Youthwithchronicillnessfaceisolationfromtheirpeersandmustrelymorecloselyonfamilyandhealthcareprovidersduringatimethatmostyouthareproclaimingtheirindependence.Affectedyouthmaybemorelikelytotestlimitswithrisk-takingbehaviorssuchasdrinkingsmokingandpoormedicationadherence.Insomecasesthephysicalmanifes-tationsofMSmaycausebehaviorsthataremisinterpretedasacting-out.Forexampleayoungsterwithbladderdisturbancemayneedfrequentvisitstothebathroomatschool.Theteachermaymisinterpretthisasavoidanceintheclassroomratherthanaphysicalneed.Inanotherexampleastudentdidnotattendgymclassandwasindangeroffailing.Withsupportivequestioningthestudentrevealedthatshewasembarrassedthatshedidnotrememberhergymlockercombination.Asimplechangeofthelockallowedhertoreturntogymclass.WhataresomeofthesymptomsinwhichchildrenwithMShavedifficultycopingYouthwithMSfacemanyofthesameissuesasadultswithMS.Theymayhavesimilarphysicalproblemssuchasvisionproblemsbalancedifficultyandweakness.Aswithadultsoneofthe MSFocusSpring201412mostdifficultsymptomsisfatigue.Fatiguecanbeahiddensymptomonethatmaynotbeobvioustoanobserverbutcanhaveaprofoundeffectonthelifeofanindividual.ForkidswithMSthefatiguemayimpacttheabilitytogettoschoolontimeortofunctionandfocusinschool.Fatiguemaymakeitdifficultforachildtoparticipateinsportsorclubs.Teensandcollegestudentsmayrefrainfromgoingoutwithfriendsduetofatigueandaninabilitytokeepupwiththeirpeers.AstudentattendingaprestigiouscollegeinNewYorkCitydescribedherreluctancetogooutbecauseofherdifficultynavigatingthesubwaystairswhentired.Hersolutionwastobecomethesocialplannermakingtheplansforhergroupoffriendssothatshewouldhavemorecontroloverthesituation.HowmightachildorteenwithMSreacttothepsychosocialstressorsrelatedtothediseaseYouthwithMSmayreactinavarietyofwaysandindividualsmayexpressashiftinresponseovertime.Someyoungpeoplemaybecomewithdrawndepressedandsorrowful.Theymaytrytoprotecttheirparentsfromthesadnessthattheyfeel.Othersmayhaveamorepositiveexperiencedevelopingandstrengtheningpositiverelationships.TheprocessmaybecyclicalwithepisodesofgriefandacceptanceastheaffectedteenfacesavarietyofchangesintheirlifeduetoMS.IstheentirefamilyaffectedwhenachildisdiagnosedwithMSYesadiagnosisofMSaffectstheentirefamilyunitwhetheritisachildoradultwhoisdiagnosed.TheunpredictablenatureofMScanmakeplanningforthefuturedifficultincludingplanningasimplefamilyvacationorfinancialplanningtoconsiderthefutureneedsoftheaffectedchild.Acommonexperienceamongfamiliesistensionovertheadministrationofmedication.Childrenmayresisttakingtheirmedicationcausingturmoilbetweentheparentsasonemaytakeontheroleofgivingthemedicationwhiletheothermayassumetheroleofprotector.Forsomefamiliesmedicationtimebecomesatimeoftearsandstressforallinvolved.Growingupasahealthychildwhosesiblinghasachronicillnesscanbedifficult.Thehealthychildmayexpressjealousyforattentionthesiblingreceivesormayhavefeelingsofguiltforbeinghealthy.ThehealthychildmayworryforhisorherfuturehealthconcernedthattheytoomaydevelopMS.Keepingopenlinesofcommunicationwiththesiblingsisimportant.Theyshouldhavetheopportunitytosharetheirconcernsandhopes.Itisnaturalthatindifficulttimesourattentiongoestothechildwiththemostpressingneeds.Remembertogivetimeandattentiontothethingsthatmattertothesiblingaswell.Itmaybehelpfultoidentifyotherfamilyandtrustedadultstohelpwhentimeandenergyarelimited.WhatconcernsandfeelingsdoparentsofachildwithMScommonlyreportInpediatricMSthefamilyisoftenisolatedincopingwithanuncommondisorderofchildhood.Theyexperiencefeelingsofisolationnotknowinganyoneelsewithasimilarexperience.Unfortunatelywhenthefamilydiscloses MSFocusSpring201413thediagnosistootherssuchasteachersandschooladministratorscoachesandotherfamilymemberstheymayfacedisbeliefsuchasMSdoesnthappentokids.ParentsoftenexperiencefeelingsofguiltabouttheirchildsMS.Aswithotherchildhooddiseasesparentsoftenquestionwhattheymayhavedonetocausetheirchildtobeaffected.ItisimportanttoknowandrememberthatalthoughtheexactcauseofMSisstillunknownwedoknowthatitisnotduetotheparentsactions.ThediagnosisofpediatricMSmaybecomplicatedanddelayedduetounder-recognitionbyhealthcareproviders.Sometimestheyouththemselvesdonottelltheirparentaboutasymptomwhichwouldcauseadelayinevaluationanddiagnosis.Parentsoftenreportfeelingguiltythattheydidnotgettheirchildintocaresooner.Allparentshavehopesanddreamsfortheirchildsfuture.Foraparentaffectedbyachildsillnesstherearefeelingsofworryandsadnessoverwhatthefuturewillbring.InpediatricMSitisdifficulttopredictthecourseoftheillnessandthemanifestationsoftheMSontheirchildsfuture.PlanningforthefutureasoneschildbecomesanindependentadultmaybemorecomplicatedforafamilyimpactedbyMS.Eachfamilywillbeaffecteddifferently.Isadherencetoadisease-modifyingtherapymoreofaprobleminpediatricMSAdherencetomedicaltreatmentsinyouthwithchronicillnesshasbeenreportedtobecloseto50percent.Therearemanyreasonsforthelowratesofadherencewhichincludethedevelopmentalstateofteensandfeelingsofomnipotencewithanimmatureabilitytoappreciatethepotentialconsequencesofonesactions.Duringadolescencethepeergrouptakesongreatersignificancewhichmaycausetensionbetweentheteenthefamilyandmedicalteam.Bodyimagebecomesmoreimportantduringadolescence.AdherencetotreatmentsthatmaycausephysicalchangessuchasweightgainwiththecorticosteroidsusedforanMSrelapsemaybemoredifficult.Someyouthhavesharedthattheymaynotdisclosesymptomsofarelapseinordertoavoidthetreatment.Otheryouthhavenotdisclosedrelapsesymptomsbecausetheywantedtoprotecttheirparentsfromtheworryofanotherrelapse.Amongyouthwithanychronicillnessadherenceisrelatedtomotivationperceivedsupportfromfamilypeersandcareproviderseducationregardingtreatmentandconcernregardingacuteorfutureproblems.Adherencetotreatmentismaximizedbyallowingthechildtobeinvolvedinthedecisionmakingprocesstotheextentthatisdevelopmentallyappropriate.Treatmentgoalsmaychangeovertime.UntilrelativelyrecentlytreatmentforpediatricMShadbeenlimitedtoinjections.StudiesofadherenceinpediatricMSarelimitedwithadherencereportedtodeclinewithtime.Approximately50percentofyouthdiscontinuedtreatmentwithintwoyears.Involvingtheaffectedyouthinthedecisionmakingprocessisimportant.Withtheintroductionofnewertreatmentoptionsitishopefulthatadherencetotherapywillincrease. MariaC.MilazzoisaclinicalassistantprofessorattheSchoolofNursingatStonyBrookinNewYork.SheisapediatricnursepractitioneraffiliatedwiththeLourieCenterforPediatricMSatStonyBrookMedicine.MariaisthefounderanddirectoroftheLourieCentersTeenAdventureCampwhichiswhereshehadtheopportunitytomeetMollyWilliamsseepage28.TogetherMariaandMollyhavewelcomedmanyteenswithMStothenewworldofacommunityofyouthlivingandthrivingwithpediatriconsetMS.WhatkindofresearchisunderwaytoaddtoourunderstandingofthepsychosocialandcognitivedysfunctioninpediatricMSResearchcontinuesinareasofcognitiveremediation.Factorsrelatedtoimprovedpsychosocialfunctionandhealth-relatedqualityoflifearebeingexplored.Futureresearchgoalsincludedevelopingstrategiesforidentifyingchildrenatriskforcognitiveproblemssothatearlytreatmentcanbeinitiated.14MSFocusSpring2014 15MSFocusSpring2014WhilemostkidswithMShavemildandmanageablesymptomsasmallpercentageexperiencesymptomsthathaveasignificantimpactontheirdailylivesincludingschool.Itscriticaltorecognizeandaddressthesesymptomsbeforetheyimpactyourchildsacademicprogressthismeansknowingthesignsofemergingdifficulties.Symptomscanchangefromweektoweeksowatchyourchildcarefully.HereswhattolookforVisionBlurryordoublevisionmayimpactreadingwritingorattention.LearningandmemoryBecauseMScanaffectbrainfunctionachildsattentionspanandthinkingabilitiessuchastheabilitytoreasonortoprocessandrememberinformationmaybeimpacted.ThisisparticularlytrueforyoungerchildrenwhodevelopactiveMSbeforetheymastereducationalbuildingblockssuchasmathematicsandgrammar.ThesechildrenmaybeatriskforperformingpoorlycomparedwithkidswhomasterthesesubjectsbeforetheydevelopactiveMS.WritingAcuteattacksorlingeringsymptomscancausenumbnessweaknessfatiguepoorpostureorcoordinationdifficultiesallofwhichcanaffecthandwriting.SocializationLearningsocialskillsisacriticalpartofdevelopmentandschooliswheremostofthisdevelopmenthappens.MScanmakesocializingatschoolmoredifficult.ChildrenwithMSmaywithdrawfrompeersbecausetheyfeeldifferentfromtheirschoolmatesdepressedorembarrassedorbecauseofphysicalsymptomssuchasfatigue.Ingeneralchildrenwithmoreobviousphysicalsymptomsaremorelikelytohavetroublewithsocialization.Whenachildssymptomsaremakingcertaintasksdifficulttrycomingupwithstrategiestogetthetaskdone.Forinstanceyourchildcantrycountingonhisorherfingers.Whenyouteachyourchildanewwaytoaccomplishataskseeifitmakesthetaskeasier.CanyourchildperformthetaskaloneorcanheorshedoitwithassistanceDoesthatmeanyourchildwillneedadditionalhelpintheclassroomTypesofSchoolAccommodationsThereareseverallevelsofinterventiontohelpachildwhoshavingdifficultyinschoolrangingfrominformalagreementswiththeteachertomoreformalarrangements.Theyare 16MSFocusSpring2014InformalAccommodationThisisaninformalarrangementthatyoudiscussandnegotiatewithyourchildsteacher.Formaltestingisntrequiredandyourchilddoesnthavetomeetspecificcriteriaorbedeemedeligible.ForexamplethearrangementcouldincludeMultiple-choicetestsifyourchildhastroublerecallinginformationBathroompassifyourchildhasbladdercontrolproblemsFrequentbreaksifyourchildhasfatigueordifficultyconcentratingPreferentialclassseatingarrangementifyourchildhasvisionproblemsorattentiondeficitReductioninhomeworkifyourchildhasextremefatigueorproblemswithwriting.Formal504PlanThisisthenextlevelofinterventionafteraninformalaccommodation.Schooladministratorssuchastheprincipalareinvolved.ToqualifyyouneedaletterfromamedicalproviderverifyingthatyourchildhasMS.Discussthisplanwithschoolpersonnelsuchasguidancecounselorsatthebeginningofeachschoolyear.Aformal504plancouldincludeAidforstudentswithvisionimpairmentsforinstanceareaderComputerfortakingnotesandtestsEquipmentmodificationsExtendedtest-takingtimePhysicalandoccupationaltherapyPsychologicalservicesRelocationofclassroomsforchildrenwithfatigueorphysicaldisabilitiesthataffectgrossmotorskillsSchoolhealthservicesSpeechandlanguagetherapy.SpecialEducationIndividualswithDisabilitiesEducationActIDEAandIndividualEducationPlanIEPForthistypeofinterventionandserviceschildrenmustundergoformalpsycho-educationaltestingandbedeemedeligiblebymeetingoneofthecriteriaunderIDEAclearlydemonstratingthateithermedicalpsychologicalorphysicalconditionsaresignificantlyimpactingthestudentslearning.IEPsaretailoredtoindividualstudentstoaidintheirlearning.Forexampletheplancouldinclude 17MSFocusSpring2014MedicalservicesfordiagnosticorevaluationpurposesonlyMobilityservicesOccupationaltherapyforstudentswithfinemotororvisionproblemsParentcounselingandtrainingPhysicaltherapyPsychologicalservicesSchoolhealthservicesbyaschoolnurseorotherqualifiedpersonnelSocialworkservicesSpeechlanguagetherapyandaudiologyservicesTherapeuticrecreationoradaptivephysicaleducation.WorkingwiththeSchoolEachschoolsystemhasaprocedurefordevelopingplanstohelpstudentswhoseschoolperformanceissufferingandwhoareindangerofmissingeducationalmilestones.Usuallytheprocessbeginsbycontactingtheschoolprincipalprincipalsdesigneeortheteachers.Thecaseisthenreferredtoateamthatdevelopsandimplementsanaccommodationplanforthestudent.Parentsgetacopyofthisplanandtheresafollow-upmeetingtodeterminewhethertheaccommodationisworking.Atthefollow-upmeetingtheplanmayberedesignedortheteammaydecidethataformal504plananassessmenttodetermineeligibilityforanIndividualEducationPlanorbothisneeded.Bepreparedtoprovideyourchildseducationalhistorytotheschoolpsychologistandneuropsychologist.BeforeyoumeetthinkaboutthefollowingquestionsandhavespecificexamplesreadyDidyourchildreceivepsychoeducationaltestingbeforebeingdiagnosedwithMSHaveyouoryourchildsteachershadconcernsaboutyourchildslearningDoesyourchildcurrentlyreceiveorhassheorhereceivedanyformalorinformaleducationalservicesatschoolWhatareyourchildscurrentcomplaintsaboutlearningdifficultiesatschoolWhatsymptomsgetinthewayofyourchildsschoolworkandlifeatschoolWhenyouworkwithyourchildsschooltohelpthemunderstandandrespondtoyourchildsneedsitshelpfultokeepinmindthatteachersandadministratorslikemostpeoplehaveaneasiertimerecognizingandrespondingtosymptomstheycaneasilyseeandunderstandsuchaswalkingdifficultiesbalanceproblemsortremorthantolessobviousoneslikefatigueandcognitivechanges.Themoreyouunderstandyourchildssymptomsthebetterpreparedyoullbetohelpothersunderstandthemandtocommunicatewhatyourchildneeds.Donthesitatetoaskyourchildshealthcareteamforsuggestionsoninteractingwiththeschool.ContentprovidedbyUCSFBenioffChildrensHospitalCopyrightedbyRegentsoftheUniversityofCalifornia 18MSFocusSpring2014ByAlissaAydenIwouldliketointroducemyselfastheMultipleSclerosisFoundationsnewSupportGroupCoordinator.IamhonoredtobeapartofboththeMSFsmissionandthewonderfulworktheMSFsIndependentSupportGroupNetworkisdoingnationwide.InmynewpositionIhavethegoodfortunetobecomepersonallyacquaintedwiththeleadersandmembersofouraffiliatedsupportgroupsnationwide.IcanearnestlysaythatthepeoplewithMSwhomIhavebeguntoknowoverthepastfewmonthsaresomeofthemostcompassionatehearteningandcourageouspeopleIhaveevermet.Wehavemanyexcitingplansfor2014.Oneofourgoalsistobecomebetteracquaintedwithoursupportgroupscommunity.Weareworkingdiligentlytoelicitandanalyzefeedbackinordertodevelopnewandinnovativeprogrammingtofurthersupportouraffiliatedgroups.EffortsarealsounderwaytoexpandourIndependentSupportGroupNetwork.Currentlywehaveover150affiliatedsupportgroupsnationwide.IamdedicatedtoseeingthatnumbergroweveryyearsothateverypersonwithMSinthiscountrywillbeabletofindanunder-standingandencouragingcommunityofpeersrightinhisorherbackyard.Thereareoftenmisconceptionsaboutthepurposeandefficacyofsupportgroups.HowevertheMSFapproachtosupportgroupsistrulystraightforwardandbestcapturedbyourmottoItsAllAboutMEEMotivatingEducatingEmpowering.SupportgroupsexisttoconnectyouwiththelatestinformationaboutMStogiveyouanopportunitytosharestoriesandexperienceswithotherpeoplewhowillunderstandtoinspireyoutodiscovernewstrengthsandabilitiesyoudidntknowyouhadtohelpyoufocusonwhatyoucandoandtofindwaystostaypositiveinthisjourneythroughlifewithMS.SupportgroupsexistwiththeexpressgoalofhelpingtomakeeverydayforpeoplewithMSandtheirfamiliesalittlebrighteralittleeasierandalittlebetter.TheMSFprovidesguidanceresourcesandstructurewhileallowingaffiliatedsupportgroupstomaintaintheirindependence.Werecognizethateachsupportgroupisuniquelypositionedtoservetheneedsofitsspecificmembersandcommunity.Pleasedonothesitatetoreachouttomeatanytime.Iamavailableviaphoneat1-888-MSFOCUS673-6287orviaemailatalissamsfocus.organdwouldlovetohearfromyou.FromthebottomofmyheartIthankallofyouforwelcomingmetotheMSFfamily.ItrulylookforwardtoworkingtogethertomotivateeducateandempowerpeoplewithMSthroughoursupportgroups 19MSFocusSpring2014 PleaseseeBriefSummaryofImportantProductInformationonnextpages.GILENYAisaregisteredtrademarkofNovartisAG.2013Novartis813GYA-1289742AvonexisaregisteredtrademarkofBiogenIdec.GILENYAmaycauseserioussideeffectssuchasSlowheartrateespeciallyafteryourrstdose.AnECGwillbeperformedbeforeand6hoursafteryourrstdose.Yourpulseandbloodpressureshouldbecheckedeveryhourwhileyoustayinamedicalfacilityduringthistime.Ifyourheartrateslowsdowntoomuchyoumightfeeldizzyortiredorfeellikeyourheartisbeatingslowlyorskippingbeats.Symptomscanhappenupto24hoursafteryourrstdose.After6hoursifyourECGshowsanyheartproblemsorifyourheartrateisstilltooloworcontinuestodecreaseyouwillcontinuetobewatchedbyahealthcareprofessional.Ifyouhaveanyserioussideeffectsafteryourrstdoseespeciallythosethatrequiretreatmentwithothermedicinesyouwillstayinamedicalfacilitytobewatchedovernightandforatleast6hoursafteryourseconddoseofGILENYAthenextday.Ifyouhavecertaintypesofheartproblemsorifyouaretakingcertaintypesofmedicinesthatcanaffectyourheartyouwillbewatchedovernightafteryoutakeyourrstdose.Ifyouexperienceslowheartrateitwillusuallyreturntonormalwithin1month.Callyourdoctororgotothenearestemergencyroomrightawayifyouhaveanysymptomsofaslowheartrate.IfyoustoptakingGILENYAformorethan14daysafteryourrstmonthoftreatmentyouwillneedtorepeatthisobservation.Increasedriskofseriousinfections.GILENYAlowersthenumberofwhitebloodcellslymphocytesinyourblood.Thiswillusuallygobacktonormalwithin2monthsofstoppingGILENYA.YourdoctormaydoabloodtestbeforeyoustartGILENYA.Increasedriskofinfectionwasseenwithdoseshigherthantheapproveddose0.5mg.Twopatientsdiedwhotookhigher-doseGILENYA1.25mgcombinedwithhigh-dosesteroids.Callyourdoctorrightawayifyouhavefevertirednessbodyacheschillsnauseaorvomiting.MacularedemaavisionproblemthatcancausesomeofthesamevisionsymptomsasanMSattackopticneuritisornosymptoms.Macularedemausuallystartsintherst3to4monthsafterstartingGILENYA.YourdoctorshouldtestyourvisionbeforeyoustartGILENYA3to4monthsafteryoustartGILENYAandanytimeyounoticevisionchanges.Visionproblemsmaycontinueaftermacularedemahasgoneaway.Yourriskofmacularedemamaybehigherifyouhavediabetesorhavehadaninammationofyoureyeuveitis.Callyourdoctorrightawayifyouhaveblurrinessshadowsorablindspotinthecenterofyourvisionsensitivitytolightorunusuallycoloredvision.Breathingproblems.Somepatientshaveshortnessofbreath.Callyourdoctorrightawayifyouhavetroublebreathing.Liverproblems.YourdoctorshoulddobloodteststocheckyourliverbeforeyoustartGILENYA.Callyourdoctorrightawayifyouhavenauseavomitingstomachpainlossofappetitetirednessdarkurineorifyourskinorthewhitesofyoureyesturnyellow.IncreasesinbloodpressureBP.BPshouldbemonitoredduringtreatment.GILENYAmayharmyourunbornbaby.Talktoyourdoctorifyouarepregnantorplanningtobecomepregnant.WomenwhocanbecomepregnantshoulduseeffectivebirthcontrolwhileonGILENYAandforatleast2monthsafterstopping.IfyoubecomepregnantwhiletakingGILENYAorwithin2monthsafterstoppingtellyourdoctorrightaway.WomenwhotakeGILENYAshouldnotbreastfeedasitisnotknownifGILENYApassesintobreastmilk.ApregnancyregistryisavailableforwomenwhobecomepregnantduringGILENYAtreatment.Call1-877-598-7237orvisitwww.gilenyapregnancyregistry.comformoreinformation.Tellyourdoctoraboutallyourmedicalconditionsincludingifyouhadornowhaveanirregularorabnormalheartbeathistoryofstrokeorwarningstrokeheartproblemsahistoryofrepeatedfaintingafeverorinfectionorifyouareunabletoghtinfectionseyeproblemsdiabetesbreathingorliverproblemsorhighbloodpressure.Alsotellyourdoctorifyouhavehadchickenpoxorhavereceivedthevaccineforchickenpox.Yourdoctormaydoatestforthechickenpoxvirusandyoumayneedtogetthevaccineforchickenpoxandwait1monthbeforestartingGILENYA.Tellyourdoctoraboutallthemedicinesyoutakeincludingmedicinesforheartproblemsorhighbloodpressureorothermedicinesthatmayloweryourheartrateorchangeyourheartrhythmmedicinesthatcouldincreaseyourchanceofinfectionssuchasmedicinestotreatcancerorcontrolyourimmunesystemorketoconazoleanantifungalbymouth.IftakenwithGILENYAserioussideeffectsmayoccur.YoushouldnotgetcertainvaccineswhiletakingGILENYAandforatleast2monthsafterstopping.ThemostcommonsideeffectswithGILENYAwereheadacheudiarrheabackpainabnormallivertestsandcough.YouareencouragedtoreportnegativesideeffectsofprescriptiondrugstotheFDA.Visitwww.fda.govmedwatchorcall1-800-FDA-1088.PleaseseeadditionalImportantSafetyInformationonpreviouspage.CONTINUEDFROMPREVIOUSPAGEImportantSafetyInformation MEDICATIONGUIDEGILENYAje-LEN-yahfingolimodcapsulesReadthisMedicationGuidebeforeyoustartusingGILENYAandeachtimeyougetarefill.Theremaybenewinformation.Thisinformationdoesnottaketheplaceoftalkingwithyourdoctoraboutyourmedicalconditionoryourtreatment.WhatisthemostimportantinformationIshouldknowaboutGILENYAGILENYAmaycauseserioussideeffectsincluding1.SlowheartratebradycardiaorbradyarrhythmiawhenyoustarttakingGILENYA.GILENYAcancauseyourheartratetoslowdownespeciallyafteryoutakeyourfirstdose.YouwillhaveatesttochecktheelectricalactivityofyourheartECGbeforeyoutakeyourfirstdoseofGILENYA.Youshouldstayinamedicalfacilityforatleast6hoursafteryoutakeyourfirstdoseofGILENYA.AfteryoutakeyourfirstdoseofGILENYAYourpulseandbloodpressureshouldbecheckedeveryhour.Youshouldbewatchedbyahealthcareprofessionaltoseeifyouhaveanyserioussideeffects.IfyourheartrateslowsdowntoomuchyoumayhavesymptomssuchasdizzinesstirednessfeelinglikeyourheartisbeatingslowlyorskippingbeatsIfyouhaveanyofthesymptomsofslowheartratetheywillusuallyhappenduringthefirst6hoursafteryourfirstdoseofGILENYA.Symptomscanhappenupto24hoursafteryoutakeyourfirstGILENYAdose.6hoursafteryoutakeyourfirstdoseofGILENYAyouwillhaveanotherECG.IfyourECGshowsanyheartproblemsorifyourheartrateisstilltooloworcontinuestodecreaseyouwillcontinuetobewatched.IfyouhaveanyserioussideeffectsafteryourfirstdoseofGILENYAespeciallythosethatrequiretreatmentwithothermedicinesyouwillstayinthemedicalfacilitytobewatchedovernight.Youwillalsobewatchedforanyserioussideeffectsforatleast6hoursafteryoutakeyourseconddoseofGILENYAthenextday.Ifyouhavecertaintypesofheartproblemsorifyouaretak-ingcertaintypesofmedicinesthatcanaffectyourheartyouwillbewatchedovernightafteryoutakeyourfirstdoseofGILENYA.Yourslowheartratewillusuallyreturntonormalwithin1monthafteryoustarttakingGILENYA.Callyourdoctororgotothenearestemergencyroomrightawayifyouhaveanysymptomsofslowheartrate.2.Infections.GILENYAcanincreaseyourriskofseriousinfec-tions.GILENYAlowersthenumberofwhitebloodcellslym-phocytesinyourblood.Thiswillusuallygobacktonormalwithin2monthsofstoppingtreatment.YourdoctormaydoabloodtestbeforeyoustarttakingGILENYA.Callyourdoctorrightawayifyouhaveanyofthesesymptomsofaninfectionfevertirednessbodyacheschillsnauseavomiting3.Aproblemwithyourvisioncalledmacularedema.MacularedemacancausesomeofthesamevisionsymptomsasanMSattackopticneuritis.Youmaynotnoticeanysymptomswithmacularedema.Macularedemausuallystartsinthefirst3to4monthsafteryoustarttakingGILENYA.YourdoctorshouldtestyourvisionbeforeyoustarttakingGILENYAand3to4monthsafteryoustarttakingGILENYAoranytimeyounoticevisionchangesduringtreatmentwithGILENYA.Yourriskofmacularedemamaybehigherifyouhavediabetesorhavehadaninflammationofyoureyecalleduveitis.CallyourdoctorrightawayifyouhaveanyofthefollowingblurrinessorshadowsinthecenterofyourvisionablindspotinthecenterofyourvisionsensitivitytolightunusuallycoloredtintedvisionWhatisGILENYAGILENYAisaprescriptionmedicineusedtotreatrelapsingformsofmultiplesclerosisMSinadults.GILENYAcandecreasethenumberofMSflare-upsrelapses.GILENYAdoesnotcureMSbutitcanhelpslowdownthephysicalproblemsthatMScauses.ItisnotknownifGILENYAissafeandeffectiveinchildrenunderage18.WhoshouldnottakeGILENYADonottakeGILENYAifyouhavehadaheartattackunstableanginastrokeorwarningstrokeorcertaintypesofheartfailureinthelast6monthshavecertaintypesofirregularorabnormalheartbeatarrhythmiaincludingpatientsinwhomaheartfindingcalledprolongedQTisseenonECGbeforestartingGILENYAaretakingcertainmedicinesthatchangeyourheartrhythmIfanyoftheabovesituationsapplytoyoutellyourdoctor.WhatshouldItellmydoctorbeforetakingGILENYABeforeyoutakeGILENYAtellyourdoctoraboutallyourmedicalconditionsincludingifyouhadornowhaveanirregularorabnormalheartbeatarrhythmiaahistoryofstrokeorwarningstrokeheartproblemsincludingheartattackoranginaahistoryofrepeatedfaintingsyncopeafeverorinfectionoryouareunabletofightinfections.Tellyourdoctorifyouhavehadchickenpoxorhavereceivedthevaccineforchickenpox.Yourdoctormaydoabloodtestforchickenpoxvirus.Youmayneedtogetthevaccineforchickenpoxandthenwait1monthbeforeyoustarttak-ingGILENYA.eyeproblemsespeciallyaninflammationoftheeyecalleduveitis.diabetesbreathingproblemsincludingduringyoursleepliverproblemshighbloodpressureArepregnantorplantobecomepregnant.GILENYAmayharmyourunbornbaby.Talktoyourdoctorifyouarepreg-nantorareplanningtobecomepregnant.TellyourdoctorrightawayifyoubecomepregnantwhiletakingGILENYAorifyoubecomepregnantwithin2monthsafteryoustoptakingGILENYA.IfyouareafemalewhocanbecomepregnantyoushoulduseeffectivebirthcontrolduringyourtreatmentwithGILENYAandforatleast2monthsafteryoustoptakingGILENYA.PregnancyRegistryThereisaregistryforwomenwhobecomepregnantduringtreatmentwithGILENYA.Ifyoubecomepreg-nantwhiletakingGILENYAtalktoyourdoctoraboutregister-ingwiththeGILENYAPregnancyRegistry.Thepurposeofthisregistryistocollectinformationaboutyourhealthandyourbabyshealth. FormoreinformationyoucancalltheGILENYAPregnancyRegistryat1-877-598-7237orvisitwww.gilenyapregnancyregistry.com.Arebreastfeedingorplantobreastfeed.ItisnotknownifGILENYApassesintoyourbreastmilk.YouandyourdoctorshoulddecideifyouwilltakeGILENYAorbreastfeed.Youshouldnotdoboth.Tellyourdoctoraboutallthemedicinesyoutakeincludingpre-scriptionandnon-prescriptionmedicinesvitaminsandherbalsupplements.Knowthemedicinesyoutake.Keepalistofyourmedicineswithyoutoshowyourdoctorandpharmacistwhenyougetanewmedicine.UsingGILENYAandothermedicinestogethermayaffecteachothercausingserioussideeffects.EspeciallytellyourdoctorifyoutakeMedicinesforheartproblemsorhighbloodpressureorothermedicinesthatmayloweryourheartrateorchangeyourheartrhythmVaccines.Tellyourdoctorifyouhavebeenvaccinatedwithin1monthbeforeyoustarttakingGILENYA.YoushouldnotgetcertainvaccineswhileyoutakeGILENYAandforatleast2monthsafteryoustoptakingGILENYA.Ifyoutakecertainvaccinesyoumaygettheinfectionthevaccineshouldhaveprevented.VaccinesmaynotworkaswellwhengivenduringGILENYAtreatment.Medicinesthatcouldraiseyourchanceofgettinginfectionssuchasmedicinestotreatcancerortocontrolyourimmunesystem.ketoconazoleanantifungaldrugbymouthAskyourdoctororpharmacistforalistofthesemedicinesifyouarenotsure.HowshouldItakeGILENYAYourfirstdoseofGILENYAwillbegiveninamedicalfacilitywhereyouwillbewatchedforatleast6hoursafteryourfirstdoseofGILENYA.SeeWhatisthemostimportantinforma-tionIshouldknowaboutGILENYATakeGILENYAexactlyasyourdoctortellsyoutotakeit.TakeGILENYA1timeeachday.TakeGILENYAwithorwithoutfood.DonotstoptakingGILENYAwithouttalkingwithyourdoctorfirst.IfyoustartGILENYAagainafterstoppingfor2weeksormoreyouwillstarttakingGILENYAagaininyourdoctorsofficeorclinic.WhatarepossiblesideeffectsofGILENYAGILENYAcancauseserioussideeffects.SeeWhatisthemostimportantinformationIshouldknowaboutGILENYASerioussideeffectsincludeBreathingProblems.SomepeoplewhotakeGILENYAhaveshortnessofbreath.Callyourdoctorrightawayifyouhavetroublebreathing.Liverproblems.GILENYAmaycauseliverproblems.YourdoctorshoulddobloodteststocheckyourliverbeforeyoustarttakingGILENYA.CallyourdoctorrightawayifyouhaveanyofthefollowingsymptomsofliverproblemsnauseavomitingstomachpainlossofappetitetirednessyourskinorthewhitesofyoureyesturnyellowdarkurineThemostcommonsideeffectsofGILENYAincludeheadachefludiarrheabackpainabnormallivertestscoughTellyourdoctorifyouhaveanysideeffectthatbothersyouorthatdoesnotgoaway.ThesearenotallofthepossiblesideeffectsofGILENYA.Formoreinformationaskyourdoctororpharmacist.Callyourdoctorformedicaladviceaboutsideeffects.YoumayreportsideeffectstoFDAat1-800-FDA-1088.HowdoIstoreGILENYAStoreGILENYAintheoriginalblisterpackinadryplace.StoreGILENYAatroomtemperaturebetween59Fto86F15Cto30C.KeepGILENYAandallmedicinesoutofthereachofchildren.GeneralinformationaboutGILENYAMedicinesaresometimesprescribedforpurposesotherthanthoselistedinaMedicationGuide.DonotuseGILENYAforacon-ditionforwhichitwasnotprescribed.DonotgiveGILENYAtootherpeopleeveniftheyhavethesamesymptomsyouhave.Itmayharmthem.ThisMedicationGuidesummarizesthemostimportantinforma-tionaboutGILENYA.Ifyouwouldlikemoreinformationtalkwithyourdoctor.Youcanaskyourdoctororpharmacistforinforma-tionaboutGILENYAthatiswrittenforhealthcareprofessionals.Formoreinformationgotowww.pharma.US.Novartis.comorcall1-888-669-6682.WhataretheingredientsinGILENYAActiveingredientfingolimodInactiveingredientsgelatinmagnesiumstearatemannitoltita-niumdioxideyellowironoxide.ThisMedicationGuidehasbeenapprovedbytheU.S.FoodandDrugAdministration.GILENYAisatrademarkofNovartisAG.ManufacturedbyNovartisPharmaSteinAGSteinSwitzerlandDistributedbyNovartisPharmaceuticalsCorporationEastHanoverNewJersey07936NovartisT2012-109May2012 MSFocusSpring201423Mostoftendiagnosedbetweentheagesof20and50multiplesclerosisiscommonlythoughtofasadiseasethathitspeopleintheprimeoflife.SometimesthoughMSstrikesmuchearlier.Whendiagnosedinpeopleyoungerthan18thediseaseiscalledpediatricMS.Somewherebetween2to5percentofallMScasesfallintothatcategoryaffectinganywherefrom8000to20000children.SeveralthousandmorechildrenandteensmayhavesymptomsofMSbutnofirmdiagnosis.AlthoughrelativelyrarepediatricMSpresentsuniquechallengesforchildrenandtheirfamiliesaswellasformedicalprofessionalswhomightnotrealizethediseasecanoccurinyoungpeople.MostchildrenwithMShavetherelapsing-remittingformofthediseaseRRMS.DuringanattackorrelapsetheywillhaveactiveMSsymptoms.Afteraperiodoftimethosesymptomsforthemostpartdisappearandthepersonissaidtobeinremission.AlthoughtheseperiodsofremissionmaygoonforyearsitisnotuncommonforpeopleofallageswithMStohavewhatisknownaspseudo-relapses.Duringapseudo-relapsesymptomsflareduetocircumstancesotherthandiseaseprogressionmostoftenwarmtemperaturesoranillnesssuchasacoldortheflu.InsomecaseschildrenwithRRMSmaygoontodevelopsecondaryprogressiveMSSPMSasadults.InSPMSsymptomsneverentirelygoawayalthoughtherearetimeswhentheyworsenorimprovesignificantly.OtherformsofMSincludeprimaryprogressiveandprimaryrelapsingMSbothofwhichinvolvedisabilityfromthebeginningofthediseaseandareveryrareinchildren.ChildrenandadultscanalsoexperienceaphenomenonknownasClinicallyIsolatedSyndromeCISanattackofneurologicalsymptomssometimescalledaninitialdemyelinatingeventwhichmayormaynotgoontobecomeRRMSoranotherformofMS.IncreasinglytreatmentsarebeingofferedforMSassoonasCISisdiagnosedwiththeunderstandingthatearlytreatmentforMSisbelievedtoreducethenumberofattacksapersonundergoesthroughthecourseoftheirlifetime.ChildrenwithMSaremostoftendiagnosedbetweentheagesof8and14thoughmuchyoungerchildrencanhavethedisease.CommonfirstsymptomsofpediatricMSincludeatypeofvisionproblemknownasopticneuritisandlossofstrengthandsensationinlimbssometimescalledtransversemyelitis.GettingaDiagnosisPediatricMScanbedifficulttodiagnose.Youngchildrenmaynottelltheirparentsordoctorsaboutalloftheirsymptomsandalthoughbothpediatriciansandneuro-logistsarebecomingmoreawareofpediatricMStherearestillrelativelyfewdoctorswhospecializeintreatingyoungpeoplewhohaveit.AsaresultmanychildrenandteensfirstseetheirpediatricianorageneralneurologistsomeofwhommaybeunfamiliarwithhowpediatricMSdiffersfromthediseaseinadults. 24MSFocusSpring2014Evendoctorswell-versedinMScanhaveproblemsnarrowingdownthediagnosisinchildreninpartbecausevisionproblemsandothercommonfirstsymptomsarenotexclusivetoMS.OtherneurologicalconditionsincludingAcuteDisseminatedEncephalomyelitisADEMmayatfirstseemlikeamorelikelydiagnosis.ADEMisfarmorecommonthanMSinchildhoodforexample.Itcansometimeshappenafteravaccinationorillness.DespitecertainsimilaritiesthoughchildrenwithADEMhavesymptomsthatarerarelyorneverseenwithMSsuchasfeversleepinessnauseaandvomitingandtheirconditiongenerallyimprovesonitsown.ComplicatingmattersevenfurtheristhatthestandardsfordiagnosingMSwhichweredevelopedforadultsdontalwaystranslatewelltochildren.WhenitcomestomagneticresonanceimagingMRIwhichlooksforscarringfromMSonthebrainandspinalcordasfewasathirdofallchildrenwiththeconditionmeetthetraditionaldiagnosticcriteria.ParticularlyinyoungchildrentheimagesoftenshowfewerlesionsthanwouldcommonlybeseeninanadultwithMSorthelesionsmayhaveadifferentappearance.BecauseofthisthereisapushforMRIdiagnosticcriteriaspecifictopediatricMS.InordertomakeadefinitiveMSdiagnosisinachildadoctorormedicalteamwillexaminetheirsymptomsandmedicalhistoryaswellasexaminetheirreflexesandcoordination.LabtestsmostspecificallylumbarpuncturealsoknownasaspinaltapalsoplayasignificantroleoligoclonalbandsalsocalledOCBsarepresentinthespinalfluidofmorethan90percentofchildrenwiththedisease.HowisPediatricMSDifferentIthastakenresearchersdecadestounderstandhowMSimpactsadultsbuttheyhavespentcomparativelylittletimelookingatthediseaseinchildren.WhilestudiesofpediatriccasesofMShavehistoricallybeensmallbelowareafewkeywaysinwhichthediseaseappearstodifferinchildrenAlthoughmorewomenthanmenhaveMSinadulthoodundertheageof10boysarejustaslikelytogetMSasgirls.Thatappearstochangeduringadolescencewhenteengirlsaremorecommonlydiagnosedthanteenboysleadingresearcherstowonderabouttherolehormonesplayinthedisease.StudieshaveindicatedthatMSismorecommonlydiagnosedinblackandHispanicchildrenthanwouldhavebeenexpected.ForexamplewhileMSismostcommoninCaucasianadultsinagiventimeperiodmorethanhalfofthechildrenreferredtotheNationalPediatricMSCenteratStonyBrookHospitalwithsuspectedMSwhowentontohaveaconfirmeddiagnosiswereblackorHispanic.ChildrencouldexperiencethevisiondisruptionopticneuritismorefrequentlyandinbotheyesbilateralratherinjustoneasismoretypicalforadultswithMS.SymptomssuchasspasticityandbladderandsexualdysfunctionwhilefairlycommoninadultswithMSarerareinyoungpeople.About5percentofchildrenwithMSwillexperienceseizures.Childrenundertheageofsixcouldbemorelikelytoexperiencethemaswellaschangesinmentalstatus.UnlikeadultschildrenwithMSsometimesalsohaveafeverduringrelapses.ChildrencangolongperiodsbetweentheirfirstandsecondattacksofMSstudieshaveshownamedianofsixyearswhileteensdiagnosedwithMSoftenrelapsewithintheyear.WhatisthePrognosisMSisbelievedtoprogressmoreslowly 25MSFocusSpring2014inchildrenthaninadults.A2002studyshowedthatof116peoplediagnosedwithMSbeforetheageof16slightlymorethanhalfofthemhadSPMSafter23years.PhysicaldisabilityfromMSisuncommonamongchildren.Smallstudieshaveshownthatapproximatelyfiveyearsafterexperiencingtheirfirstsymptomsonly13to15percentofchildrenwithMShavesometypeofphysicallimitationcausedbythedisease.Troublethinkinglearningandrememberingthingsoftencalledcognitivedifficultiesmaybemorecommonandiscurrentlybelievedtoimpact30to40percentofallchildrenwithMS.ThisarticleisanexcerptfromtheMSFsbookletPediatricMSWhenChildrengetMultipleSclerosis.Torequestacopyorcopiescontactusbyemailsupportmsfocus.orgorcallourProgramServicesDepartmentat1-888-MSFOCUS.PediatricCentersofExcellenceProvideComprehensiveCareforKidswithMSIn2006theNationalMSSocietyestablishedanationwidenetworkofPediatricMSCentersofExcellencetoprovidecomprehensiveevaluationandcaretochildrenandteensuptoage18withMSandothercentralnervoussystemdemyelinatingdisorders.TodaytheNetworkofPediatricMSCentersninemembercentersarealsoengagedinresearchtobetterunderstandthecausesofMSthecharacteristicsofthesedisordersinchildrenandhowbesttotreatchildrenwithMS.HereisalistingofthesecentersCenterforPediatric-OnsetDemyelinatingDiseaseattheChildrensHospitalofAlabamaCHB314K16007thAveSouthBirminghamAL35233CenterDirectorJayneNessM.D.Ph.D.ContactSarahM.DowdyMPHTel205-996-7633UCSFRegionalPediatricMSCenter350ParnassusAvenueSuite908SanFranciscoCA94117CenterDirectorEmmanuelleWaubantM.D.Ph.D.Tel415-353-3939PediatricMultipleSclerosisCenteratLomaLindaUniversityChildrensHospital2195ClubCenterDriveSuiteASanBernardinoCA92408CenterDirectorGregoryAaenM.D.Tel909-835-1810PediatricMultipleSclerosisandRelatedDisordersProgramatBostonChildrensHospitalFegan11300LongwoodAvenueBostonMA02115CenterDirectorMarkGormanM.D.Tel617-355-2751PartnersPediatricMSCenterattheMassachusettsGeneralHospitalforChildrenYawkeyCenterforOutpatientCare55FruitSt.Suite6BMassachusettsGeneralHospitalBostonMA02114CenterDirectorTanujaChitnisM.D.Tel617-726-2664MayoClinicPediatricMSCenter2001stSt.SWRochesterMN55905CenterDirectorsMarcA.PattersonM.D.MosesRodriguezM.D.Tel507-293-0378PediatricMSCenteroftheJacobsNeurologicalInstitute219BryantSt.BuffaloNY14222CenterDirectorBiancaWeinstock-GuttmanM.D.Tel877-878-7367EmailPedMSthejni.orgLourieCenterforPediatricMSatStonyBrookUniversityHospitalDepartmentofNeurologyHSC-T12-020StonyBrookUniversityStonyBrookNY11794-8121CenterDirectorLaurenKruppM.D.Tel631-444-7802Emailinfopediatricmscenterstonybrook.eduTheBlueBirdCircleClinicforMultipleSclerosisTexasChildrensHospital6701FanninStreet9thFloorHoustonTX77030CenterDirectorTimothyLoetzeM.D.Tel832-822-5046 OnJune132008IfoundmyselfwaitinginadeceptivelycheeryemergencyroominthepediatricwardofoneofBostonsmostrenownedhospitals.IwasawareofthefactthatIhadmultiplesclerosis.Thediagnosiswasfreshbutundeniable.SofreshthatIhadnothadtimetocontemplateitsimpactonmyfuture.Iwas15yearsoldandhadjustenduredfivemonthsonanemotionalrollercoasterandseeminglyendlessmedicaltests.Stillthisdiagnosisthepresenceofachronicanddisablingdiseasewassurreal.Iwasfarfrombeingpreparedtodealwiththisnewreality.TheweightofwhatIhadlearnedhadnotfullysettledin.AresidentdoctorwhomIknewonlybyfirstnameDavidwasinchargeofmyneurologicaltesting.Isattherepatientlyasheproddedandtestedvarioussensoryandmotorfunctions.IrememberfeelingencouragedthatsaveformyvisionIhadcontroloverallotherbasicoperations.HavingmademesufficientlyuncomfortableDavidaskedmyparentstoleavestatingthathewantedtotalkwithmeprivately.Hefiredaseriesofquestionswhichtookallofaminuteandthenheturnedtoleave.Justasheapproachedthedoorwayhelookedbackatmeasthoughovertakenbyanunexpectedlastthought.Hewalkedbacktothefootofmybedandbegantospeak.Itshardformetotellyouthisbecauseyouaresoyoungbutyoushouldknowthatwithmultiplesclerosisitismorethanlikelyyouwillbeparalyzedwithinafewyears.Therewasnohintofhesitationorlamentashedeliveredmysentence.Itwasfluidanddetachedasifhehadjustcommentedontheweather.Hethencontinuedonhisprevioustrainofthoughtleavingmeintheroomalone.Hiswordsreverberatedinmymindatfirstwithlittlemeaning.Iwassimplytoostunnedtoprocessthem.ThenslowlyIbegantounderstandtheseveritythefinalityofthesewords.Myvisionbegantoblurastearswelledinmyeyes.AsIlaytheremyfeelingofshockwasovertakenbycolddarkfear.TherewasimpactinconnectionofthesewordswiththeimageofDavidahealer.AsIthoughtaboutthisconnectionitbegantoreinforceandaddvaliditytothediagnosisitself.Itseemedthatsometimehadpassedbeforemyattentionwasdrawnawayfromthisdarkspiralofthought.Ididnotseeorhearmyparentscomebackintomyroombuttheywerethere.Iheardmymomsanxiousvoiceandpromptlybrokedown.MomImnotgoingtobe26MSFocusSpring2014ByMollyWilliams abletogotocollegewasallIwasabletosay.DavidhaddeliveredadeathsentencejustasIwasimaginingwhatmylifewouldbelikecollegemarriagekidsandasuccessfulcareer.Davidswordshadincrediblepowerovermea15-year-oldgirl.SixyearslaterIfindmyselfthinkingbacktomyencounterwithDavidwhen-everMScomesupinconversation.Icanstillclearlyseehimstandinginfrontofmematter-of-factlydeclaringthatIwouldsoonbeconfinedtoawheelchairasthoughthisissomethingIshouldhaveexpected.EarlyinmydiagnosisIoftenthoughtbacktoDavidandmistakenlyletmyselfbelievethathispredictionwoulddictatemyfuturethatMSwouldsomedayleavemesickandbroken.StilldespiteallofthisIdonotregretmeetingDavid.Icametorealizethatspendingmytimeresentinghimwasnevergoingtochangemydiagnosis.IstillhaveMS.NothingDavidsaidordidisgoingtochangethisinescapabletruth.AtayoungageIwasforcedtoacceptanewrealityandthentoeventuallymoveon.IwillneverhoweveracceptDavidslifestyleprognosis.At15yearsoldIsawthisdiseaseasatemporarysetbacksomethingtobeovercomewithpersistencetreatmentattitudeandhopeforthefuturenottomentionthehelpofawonderfulpediatricMSspecialistwhoassuredmejusthowwrongDavidwas.TheolderIgetthemoreDaviddoesnotsoundlikethenameofamonster.MorethananythingmyencounterwithDavidgavememotivation.IdidendupattendingcollegeandIamcurrentlyfinishingmyjunioryearattheUniversityofNewHampshirestudyingneuroscienceandbehavior.MShasgivenmeauniqueperspectiveexperienceandhastestedmeinwaysIneverfathomed.Ultimatelyitdoesntmatterhowunwelcomethesechallengeswereatthetime.Lifeisaboutfacingobstaclesandgrowingfromthem.Multiplesclerosisisjustoneofmyobstacles.MollyWilliamsis21yearsoldandtheyoungestoffourchildrenasisterandtwobrothers.SheiscurrentlyfinishingherjunioryearattheUniversityofNewHampshirewhereshestudiesneuroscienceandbehavior.ShewasborninFortWorthTexasandherfamilymovedtoBedfordN.H.whenshewas7yearsold.Shewasdiagnosedwithmultiplesclerosisattheageof15whenshewasinherfreshmanyearofhighschool.SheattendedtheTeenAdventurecampforPediatricMSforthefirsttimewhenshewas17whichturnedouttobealifechangingexperience.Shehasreturnedeverysummersince.27MSFocusSpring2014T-ShirtsSweatshirtsBearsCoolingItemsJewelryOrangeRibbonAwarenessItemsCarMagnetsandsomuchmore.Seeouronlinecatalogatwww.themsshoppe.com920238-5138infothemsshoppe.comAportionofallproceedsgoestotheMSF 7-NightSouthernCaribbeanCruiseaboardRoyalCaribbeansAdventureoftheSeasdepartingSanJuanPuertoRicoonFebruary1st2015toCharlotteAmalieSt.ThomasBasseterreSt.KittsOranjestadArubaandWillemstadCuracao.InordertoparticipateintheMultipleSclerosisFoundationsprogramaboardtheshipyoumustbookthroughtheMSFbycalling800659-0081954322-1030800225-6495orcruisemsfocus.orgCruiseItinerarySundayFebruary1stDepartSanJuanPuertoRico-830p.m.MondayFebruary2ndCharlotteAmalieSt.ThomasArrive800a.m.Depart530p.m.TuesdayFebruary3rdBasseterreSt.KittsArrive800a.m.Depart500p.m.WednesdayFebruary4th-AtSeaThursdayFebruary5thOranjestadArubaArrive800a.m.Depart1000p.m.FridayFebruary6thWillemstadCuracaoArrive800a.m.-Depart600p.m.SaturdayFebruary7th-AtSeaSundayFebruary8thArriveSanJuanPuertoRico-600a.m. MSFocusSpring201425 31MSFocusSpring2014Frustrationisanormalandvalidemotionalresponsetomanyofthedifficultiesofbeingacaregiver.Whilesomeirritationmaybepartofeverydaylifeasacaregiverfeelingextremefrustrationmaynegativelyimpactyourphysicalhealthorcauseyoutobephysicallyorverballyaggressivetowardsyourlovedone.Ifyourcaregivingsituationiscausingyouextremefrustrationorangeryoumaywanttoexploresomenewtechniquesforcoping.Whenyouarefrustrateditisimportanttodistinguishbetweenwhatisandwhatisnotwithinyourpowertochange.Whendealingwithanuncontrollablecircumstanceyoudocontrolonethinghowyourespondtothatcircumstance.Inordertorespondwithoutextremefrustrationyouwillneedtolearntorecognizethewarningssignsoffrustrationintervenetocalmyourselfdownphysicallymodifyyourthoughtsinawaythatreducesyourstresslearntocommunicateassertivelylearntoaskforhelp.WarningSignsofFrustrationIfyoucanrecognizethewarningsignsoffrustrationyoucaninterveneandadjustyourmoodbeforeyoulosecontrol.Someofthecommonwarningsignsoffrustrationincludeshortnessofbreathknotinthethroatstomachcrampschestpainsheadachecompulsiveeatingexcessivealcoholconsumptionincreasedsmokinglackofpatiencedesiretostrikeout.CalmingDownPhysicallyWhenyoubecomeawareofthewarningsignsoffrustrationyoucanintervenewithanimmediateactivitytohelpyoucalmdown.Thisgivesyoutimetolookatthesituationmoreobjectivelyandtochoosehowtorespondinamorecontrolledway.Whenyoufeelyourselfbecomingfrustratedtryslowlycountingfromonetotenandtakingafewdeepbreaths.Ifyouareabletakeabriefwalkorgotoanotherroomandcollectyourthoughts.Itisbettertoleavethesituationevenforamomentthantolosecontrolorreactinawayyouwillregret.Ifyouthinksomeonemaybeoffendedwhenyouleavetheroomyoucantellthatpersonyouneedtogototherestroom.Youcanalsotrycallingafriendprayingmeditatingsinginglisteningtomusicortakingabath.Tryexperimentingwithdifferentresponsestofindoutwhatworksbestforyouandthepersonyoucarefor.Theregularpracticeofrelaxationtechniquescanalsohelpprepareyouforfrustratingcircumstances.Ifpossibletry 32MSFocusSpring2014thefollowingrelaxationexerciseforatleasttenminuteseachdaySitinacomfortablepositioninaquietplace.Takeslowdeepbreathsandrelaxthetensioninyourbody.Whileyoucontinuetotakeslowdeepbreathsyoumaywanttoimagineasafeandrestfulplaceandrepeatacalmingwordorphrase.ModifyingYourThoughtsAsyoutaketimeouttocollectyourthoughtstryrethinkingyoursituationinwaysthatreducefrustration.Howyouthinkoftenaffectshowyoufeel.Belowaresixmajortypesofunhelpfulthoughtpatternscommonamongcaregivers.Followingeachunhelpfulthoughtpatternisanexampleofanadaptiveormorehelpfulthoughtthatcanbeusedasself-defenseagainstfrustration.Familiarizingyourselfwiththeunhelpfulthoughtpatternsandtheadaptiveresponsescanhelpyoucontrolyourfrustration.Over-generalizationYoutakeonenegativesituationorcharacteristicandmultiplyit.Forexampleyouregettingreadytotakethepersoninyourcaretoadoctorsappointmentwhenyoudiscoverthecarbatteryhasdied.YouthenconcludeThisalwayshappenssomethingalwaysgoeswrong.AdaptiveresponseThisdoesnothappenallthetime.Usuallymycarisworkingjustfine.AttimesthingsdonthappenthewayIwouldlikebutsometimestheydo.DiscountingthepositiveYouoverlookthegoodthingsaboutyourcircumstancesandyourself.ForexampleyoumightnotallowyourselftofeelgoodaboutcaregivingbythinkingIcoulddomoreoranyonecoulddowhatIdo.AdaptiveresponseCaregivingisnoteasy.IttakescouragestrengthandcompassiontodowhatIdo.IamnotalwaysperfectbutIdoalotandIamtryingtobehelpful.JumpingtoconclusionsYoureachaconclusionwithouthavingallthefacts.Youmightdothisintwoways1.MindreadingWeassumethatothersarethinkingnegativethoughtsaboutus.Forexampleafrienddoesntreturnaphonecallandweassumethatheorsheisignoringusordoesntwanttotalktous.AdaptiveresponseIdontknowwhatmyfriendisthinking.ForallIknowshedidntgetthemessage.Maybesheisbusyorjustforgot.IfIwanttoknowwhatsheisthinkingIwillhavetoaskher.2.Fortune-tellingYoupredictanegativeoutcomeinthefuture.Forexampleyouwillnottryadultdaycarebecauseyouassumethepersoninyourcarewillnotenjoyit.YouthinkHewillneverdothat.NotachanceAdaptiveresponseIcannotpredictthefuture.IdontthinkheisgoingtolikeitbutIwontknowforsureunlessItry.ShouldstatementsYoutrytomotivateyourselfusingstatementssuchasIshouldcallmothermoreoftenorIshouldntgotoamoviebecauseMommightneedme.Whatyouthinkyoushoulddoisinconflictwithwhatyouwanttodo.Youendupfeelingguiltydepressedorfrustrated.AdaptiveresponseIwouldliketogotoamovie.Itsokayformetotakeabreakfromcaregivingandenjoymyself.IwillaskafriendorneighbortocheckinonMom.LabelingYouidentifyyourselforotherpeoplewithonecharacteristicoraction.ForexampleyouputoffdoingthelaundryandthinkIamlazy. MSFocusSpring201433AdaptiveresponseIamnotlazy.SometimesIdontdoasmuchasIcouldbutthatdoesntmeanIamlazy.IoftenworkhardanddothebestthatIcan.EvenIneedabreaksometimes.PersonalizingYoutakeresponsibilityforanegativeoccurrencethatisbeyondyourcontrol.Forexampleyoumightblameyourselfwhenthepersoninyourcarerequireshospitalizationorplacementinafacility.AdaptiveresponseMomsconditionhasgottentothepointwhereIcannolongertakecareofhermyself.Itisherconditionandnotmyshortcomingsthatrequirehertobeinanursinghome.UsingtheTriple-ColumnTechniqueUnhelpfulthoughtpatternsareusuallyingrainedreactionsorhabits.Tomodifyyournegativethoughtsyouwillhavetolearntorecognizethemknowwhytheyarefalseandtalkbacktothem.Onehelpfulwaytopracticeusingmoreadaptivethinkingprocessesistousethetriple-columntechnique.Drawtwolinesdownthecenterofapieceofpapertodividethepaperintothirds.Whenyouarefeelingfrustratedtakeapersonaltimeoutandwriteyournegativethoughtsinthefirstcolumn.Inthesecondcolumntrytoidentifythetypeofunhelpfulpatternfromthesixexamplesabove.Inthethirdcolumntalkbacktoyournegativethoughtswithamorepositivepointofview.CommunicatingAssertivelyGoodcommunicationcanreducefrustrationbyallowingyoutoexpressyourselfwhilehelpingotherstounder-standyourlimitsandneeds.Whenyoucommunicateassertivelyyouexpressyourownneedsanddesireswhilerespectingtheneedsanddesiresofothers.Assertivecommunicationallowsbothpartiestoengageinadignifieddiscussionabouttheissueathand.KeystoassertivecommunicationareRespectingyourownfeelingsneedsanddesires.Standingupforyourfeelingswithoutshamingdegradingorhumiliatingtheotherperson.UsingIstatementsratherthanyoustatements.ForexamplesayIneedabreakorIwouldliketotalktoyouandworkthisoutinsteadofYouareirresponsibleorYouneverhelpoutNotusingshouldstatements.ForexamplesayItsimportanttomethatpromisesbekeptinsteadofYoushouldkeepyourpromise.TheCriticalStepAskingforHelpYoucannottakeonalltheresponsibilitiesofcaregivingbyyourself.Itisessentialthatyouaskforandaccepthelp.Discussyourneedswithfamilymembersandfriendswhomightbewillingtosharecaregivingresponsibilities.Peoplewillnotrealizeyouneedhelpifyoudonotexplainyoursituationandaskforassistance.Rememberyouhavetherighttoaskforhelpandexpressyourneeds.ThisinformationhasbeenprovidedbytheFamilyCaregiverAllianceFCA.Foundedin1977FCAwasthefirstcommunity-basednonprofitorganizationinthecountrytoaddresstheneedsoffamiliesandfriendsprovidinglong-termcareathome.LongrecognizedasapioneerinhealthservicesFCAnowoffersprogramsatnationalstateandlocallevelstosupportandsustaincaregivers.LearnmoreaboutFCAatwww.caregiver.org. MSFocusSpring201434OnMarch17th2014at317p.m.ESTtheMultipleSclerosisFoundationMSFlaunchedMSFocusRadio.ThestationisonlineandavailablearoundtheworldatMSFocus.organdviathelivestreamingappsTuneIn.comandRadioLoyalty.com.SearchforMSFocusorMSFocusRadio.Inmid-MaytheMSFwillhaveourownappsforAndroidandiOSdevicesaswellasanewwebsiteMSFocusRadio.org.Currentlyyoucanlinkthroughourwebsitewww.MSFocus.org.AsyoumightimaginedevelopingMSFocusRadiodidnothappenovernight.ItallstartedwithasimplephonecallfromChrisRatliffinthespringof2005.IwasthedirectorofabroadcastingschoolandChrisaformerMSFocuseditorcalledtoaskiftheschoolcouldhelpwithsomerecordingfortheMSF.HerideawastomakearecordedversionofMSFocusforpeoplewithvisualimpairments.TheanswerwassimpleYESStudentsattheschoolhelpedwithreadingandeditingthemagazinewhichwasthenputonaCDandreleasedinthesummerof2005.Theinitialrecordingwenttoabout60peoplewithvisualimpairments.AfterIleftthebroadcastingschoolthetorchwaspassedtoMSFstafferNicoleSmithandtheAlternativeMediaDepartmentwascreated.NicoletooktheaudioversionofMSFocustoanotherlevel.SheutilizedvolunteersandMSFstafftohelprecordtheaudio.Bythetime2013arrivedthesubscriptionsfortheaudioMSFocushadgrownandmorethan24editionsofMSFocushadbeenrecordedThroughouttheyearsIcontinuedtovolunteerasareaderfortheaudioMSFocusandinthefallof2013NicolesteppeddownfromtheMSF.IreceivedamessagefromKaseyMinnisMSFsDirectorofOperationsandCommunicationsaskingifIcouldassistagainwitheditingtheaudioversionofMSFocus.TheansweragainwassimpleYESSothetorchwaspassedbacktome.ThenduringarecentplanningsessionNatalieBlakeDirectorofProgramServicesaskedaboutthepossibilityofdoinganonlineradiostation.Sincesomanypeopleareusingthewebtoaccessinformationandentertainmentitmadeperfectsense.IgottogetherwithGuyFerrierourITguruandbegantofigureoutthetechnicalsideofmakingthishappen.SoundssimpleenoughrightIvebeenworkinginradiosinceIwasMicCheck1-21-2ByChristopherHudspeth MSFocusSpring201435ateenagerandIknowthatprogramminga247radiostationtraditionaloronlineisnosmalltasksomymindstartedtoformulateaplan.WhatcontentmightweuseHmmmmAhhh-haTheaudioMSFocusisagreatplacetostartWecangothroughthearticlesandseewhatisstillrelevant.Wehavearticlesfrom2005to2013abouteverythingfromyogatoaquatictherapytoserviceanimals.NowhowaboutmusicYESWecanplaymusicthatinspiresrelaxesandmotivateswecaneventakerequests.WhataboutaudiobooksThistookalotofphonecallsandemailsbutYESHowaboutdoingliveradioshowsYESEverythingeasilystartedtofallinplace.Weevenreceivedarequestforassistancefromsomeonewhoisalreadydoingaradioshow.YESAfterdoingtheresearchmaster-mindingmakingcallssendingemailslisteningeditinganduploadingaudiofilesithasfinallyhappenedMSFocusRadioWearejuststartingandwedotakerequestsatradiomsfocus.org.ThisisourcommunityradiostationsopleaseletyourvoicebeheardTHEONLYBODY-CORECOOLINGSYSTEMDESIGNEDSPECIFICALLYFORMSPATIENTSSTACOOLUNDERVEST-Themostlight-weightcomfortablebodycoolingsystemavailable.TheStaCoolUnderVestuseshigh-qualitydurablematerialsandfoureasilyreplaceableThermoPakstwofrontandtwobacktocoolthebodycorecomfortably.EachlightweightvestoffersuptothreehoursofcoolingperThermoPaksetandasparesetforachangeoutisincludedfortotalofeightThermoPakspervest.SeewhatexistingcustomershavetosayIhaverecentlytriedthevestontwodifferentoccasions.Itworkedgreat.InoticedamajordifferenceinthewayIfeltwhilewearingit.Thevesttrulyfunctionsasadvertised.ThankyouforprovidingsuchausefulproductforusebypeoplelivingwithMultipleSclerosis.StephenSmithFormoreinformationvisituson-lineatstacoolvest.comorcalltollfree1-866-782-2665ForOn-Demandcontentgotowww.msfocus.organdclickOnDemandAudioorfromtheSoundCloudappsearchMSFocusOn-Demand.DownloadandlistentoarticlesfromMSFocusmagazinehearthelatestteleconferencesandsharewithyourfriendsandfamily. Tecfideradimethylfumarateisaprescriptionmedicineusedtotreatpeoplewithrelapsingformsofmultiplesclerosis.ImportantSafetyInformationBeforetakingandwhileyoutakeTecfideratellyourdoctoraboutanylowwhitebloodcellcountsorinfectionsoranyothermedicalconditions.WhatarethepossiblesideeffectsofTecfideraTecfideramaycauseserioussideeffectsincludingdecreasesinyourwhitebloodcellcount.YourdoctormaycheckyourwhitebloodcellcountbeforeyoutakeTecfideraandfromtimetotimeduringtreatment.ThemostcommonsideeffectsofTecfideraincludeflushingandstomachproblems.Thesecanhappenespeciallyatthestartoftreatmentandmaydecreaseovertime.Callyourdoctorifthesesymptomsbotheryouordonotgoaway.ThesearenotallthepossiblesideeffectsofTecfidera.Callyourdoctorformedicaladviceaboutsideeffects.YoumayreportsideeffectstoFDAat1-800-FDA-1088.Formoreinformationgotodailymed.nlm.nih.gov.Tellyourdoctorifyouarepregnantorplantobecomepregnantorbreastfeedingorplantobreastfeed.ItisnotknownifTecfiderawillharmyourunbornbabyorifitpassesintoyourbreastmilk.Alsotellyourdoctorifyouaretakingprescriptionorover-the-countermedicinesvitaminsorherbalsupplements.ForadditionalimportantsafetyinformationpleaseturnthenextpagetoseePatientInformation.Thisisnotintendedtoreplacediscussionswithyourdoctor. 2014BiogenIdec.Allrightsreserved.0314TEC-100626014CambridgeCenterCambridgeMA021421-800-456-2255Tecfidera.comBasedonnumberofprescriptionsfromIMSNPATMWeeklyDataSeptember272013andBiogenIdecdataonfile.TalktoyourdoctoraboutyourtreatmentgoalsandseeifswitchingtoTecfideraisrightforyou.MeetapillthathelpsyoupushbackagainstrelapsingMS.ThousandsofpeoplehaveswitchedtoTecfidera.The2mostcommonsideeffectsareflushingandstomachproblemswhichhappenmainlyatthestartoftreatmentandusuallydecreaseovertime.Itsthe1prescribedpillforrelapsingMSintheUS.PrescribedPillforrelapsingMSintheUSItslowsdevelopmentofbrainlesions.Itslowsphysicaldisabilityprogression.Itcutsrelapsesinhalf.Itsapill.RELAPSESCUTIN PatientInformationTECFIDERAtekfiderahdimethylfumaratedelayed-releasecapsulesWhatisTECFIDERABeforetakingandwhileyoutakeTECFIDERAtellyourdoctorifyouhaveorhavehadTellyourdoctorifyouareHowshouldItakeTECFIDERAWhatarethepossiblesideeffectsofTECFIDERATECFIDERAmaycauseserioussideeffectsincludingdecreasesinyourwhitebloodcellcountThemostcommonsideeffectsofTECFIDERAincludeFormoreinformationgotodailymed.nlm.nih.gov.GeneralInformationaboutthesafeandeffectiveuseofTECFIDERAWhataretheingredientsinTECFIDERAActiveingredientInactiveingredientsCapsuleShell 39MSFocusSpring2014SusanH.SqueriIwishthatotherswouldunderstandtheemotionalrollercoasterthatweareconstantlyon.OneminuteIamhappyandthenextminuteIwanttocrawlinbedandcrymyselftosleep.IwanttosurroundmyselfwithfriendsbutthenIflipaswitchandexplodewithanger.AftertheconstantshiftsinmooddamagehasbeendoneandIdontrealizeituntilitstoolate.Idontlikenothavingcontroloveranythingphysicallymentallyoremotionally.ItrytoexplainitandamtoldthatImusingMSasanexcusewhichisnotfair.Iwishmorepeopleunderstoodthispartofmultiplesclerosisthatitisntjustaphysicaldisability.EbonyCaldwellIwouldbeelatedifotherswhodonthavetodealwiththesymptomsknewhowmuchitaffectsmemory.Youimmediatelygettoldtoseeadoctorforanincreaseinthestrengthofmedication.ShawnDuffyMystoryisdifferentfromtheMSstoryyouhaveheardbefore.HollyMorrisJustbecausewedontlooksickontheoutsidedoesntmeanwearentsickontheinside.CatherineJRobertsIwouldlikepeopleespeciallyfamilytounderstandmoreaboutinvisiblesymptoms.Theyseembeawareofonlywhattheysee.IthasbeensaidthatIandafriendwithMSarefakingit.AmyDahlIwouldlikeotherstoknowthatMScanbeveryisolating.Withmanynewsymptomsmedicationsandsideeffectssometimesitmakesyoufeeluneasyinpublicplaces.Remembertoreachouttoothersthereissupportinyourcommunityonlineandbyphone.SaraTaylorIwouldlikethemtounderstandthatIdontwantanothermedication.Iwantacure.IwouldalsolikethemtoknowthatwhenwearetoldthatMSisntthatbaditisaddinginsulttoinjury.EveryoneislikeasnowflakeandnotwoarealikejustliketheMSsymptomsandthedegreeofdisabilityvaryforeveryone.Alsojustbecausetherearemedicationstotreatitdoesntmeanwenowliveanormallifeandeverythingsgoingtobeokay.IvehadseveralpeoplesaythistomeevenwhileImsittinginawheelchaironthedaysthatthediseaseflaresup.IhateitwhenpeopledownplayMS.RebeccaIrvinTakeallIwouldlikepeopletoknowthattherearedifferenttypesofMSanditaffectseveryonedifferently.FacebookFeedbackisyourchancetoshareinadvanceyourexperiencesrelatedtotopicscoveredintheMSFocus.LikeourFacebookpageatwww.facebook.comMultipleSclerosisFoundationandwatchforournextFacebookFeedbackpost.InrecognitionofNationalMSEducationandAwarenessMonthinMarchourquestionforthiseditionwasWhatwouldyoumostlikeotherstounderstandaboutmultiplesclerosis MSFocusSpring201440HealthandWellnessCatchtheWavewasthethemefortheMSFs2014educationalprogramsatseaaseven-dayEasternCaribbeanjourneyfromJanuary25toFebruary1.Notonlydidcruiserscatchthehealthandwellnesswavebuttheyalsorodethewavelikechampssurfingthroughaseaoffuninformativeandinteractivepresentations.ThegoodtimesrolledoninthetropicalportsofSanJuanPuertoRicoCharlotteAmalieSt.ThomasandPhilipsburgSt.Maarten.MSFcruisersinmotiontheywereeverywhereonthe13thAnnualMSFCruiseforaCauseSomewhereoverthedeepblueEasternCaribbeanSeapersonaltrainerJeffSegalisspeakingtoaroomfulofMSFcruiserswhohavecometohismorningsessionaboardCelebritysReflectiontolearnaboutexercisingwithMS.HavingworkedhardtowalkagainafterMSstruckyearsagoJeffunder-standstheimportanceofnevergivingup.EveryoneIwantyoutoraiseyourhand.Raiseitashighasyoucan.Give100percentHandsstretchupwards.Nowraiseyourhandshigher.MostareabletostretchupwardsanotherinchortwomakingJeffspointThoughwemaythinkwearegiving100percentwecanoftengivemore.WearestrongerthanwerealizeJoiningMSFeducationalprogramsatseahelpscruisersrealizejusthowmuchtheycando.CarolynBish72ofPortSaintLucieFla.hasbeenpushingbackagainstMSformorethanthreedecadesyetonthiscruiseshediscoversanewMindyEisenberginstructingCarolynBish MSFocusSpring201441waytodosowithyogainchairsYogatherapistMindyEisenbergshowsCarolynandothersthewaytoadapttraditionalposestoallowforlimitationsandstillgetthebenefits.IthoughtIcouldntdoitbutyesIdiditCarolynsayswithasmile.Itsnevertoolatetotrysome-thingnew.Theintroductiontoyogaiswell-timedforKarmaThreetofMidlandMich.SinceshecannolongerpracticeTaeKwonDosheearnedablackbeltjustpriortogettingdiagnosedherdoctorrecentlyrecommendedyoga.ThoughsheandherhusbandTobyenjoytravelingandcruisingKarmaadmitstobeingalittlescaredtotakeherfirstcruisewiththeMSF.ButthisnursesdesiretolearneverythingshecanaboutMSoverrodethosefearsandshesgladtobeonboard.Iloveit.EveryoneissohappyheretheyhaveapositiveoutlookandIthinkthatisthekeytoitKarmasays.Iimmediatelyfeltcomfortablewiththepeopleherebecausewehavesomethingincommon.Iwasacceptedsoquicklyasapartofthegroup.First-timecruiserMargaretCabralofStamfordConn.feelsembracedbythegroupaswell.Onlysixmonthsagoshelivedinanursinghomewhilerehabilitatingandnowheresheisenjoyingthevacationofalifetime.Othersaremovedbyherstory.AfellowcruisersharesearnedcreditperkswithMargaretanotherlendsMargarethiselectricscooterwhileheuseshermoredifficult-to-maneuvermanualwheelchair.YoumightcatchMargaretswayingtolivemusicontheupperdeckdancefloororenjoyingalate-nightsnackintheReflectionsfifth-deckcafwithotherwomenwholookforwardtotheiryearlyreunionaboardtheMSFcruise.TheresJacquelineConnellofLasVegasNev.SharlaLaFountainofGreatFallsMont.DeniseRiosofVieraFla.andSusanPaulofAltamanteSpringsFla.ThisisSusansfourthcruisewiththeMSFandthefirstforherroommateMonicaLambertofPlantationFla.FinallyhealedfromabrokenfemurMonicadecidedahealthandwellnesscruisewasjustwhatthedoctorordered.IneedtogetbacktodoingsomethingMonicasays.AndImmotivatedbytheZumba.TobyandKarmaThreetDeniseRiosMargaretCabralJacquelineConnellandSharlaLaFountain. MSFocusSpring201442ItsallaboutMEEMotivatingEducatingEmpowering.ItsdifficulttoimagineanyonenotbeingmotivatedbyZumbainChairsasMSFAmbassadorandcertifiedZumbainstructorextraordinaireNickMarchesaniboundsaroundtheconferenceroomchoreo-graphingmovestoonepoptuneafteranother.Hisenthusiasmisinfectiousandthelaughtercontagious.OnceweakoverweightandunabletowalkbecauseofMSNickworkeddiligentlytoregainhismobilityandimprovehishealth.DuringthepastdecadehehascommittedhislifetohelpingotherswithMStapintotheirMultipleStrengths.WhetherleadingasupportgrouporaZumbaclassheexudespositiveenergy.Iwanttogiveback.ThesmilesIseeasaresultofwhatIamdoingareworthmorethanmoneytomehesays.NickalsoshareshisinspiringthoughtsasfacilitatorofthePort-to-PortSupportGroupsessionwhileMSFDirectorofProgramServicesNatalieBlakeleadscaregiversintheirownseparatesession.AnotherMSFambassadorCharmaineCothranofChicagoIll.isenjoyingherthirdcruisewiththeFoundationandthefirstwithfiancKwameJoure.MindysprogramonmeditationrekindlesCharmainesinterestintheancientpractice.Itmotivatedmetogetbackontrack.Imgoingtostartgettingupearliertomeditateshesays.NotjustyetthoughsleepinginandbreakfastinbedwillcontinuefortheremainderofcruiseWhileCharmaineandKwamepreferroomserviceattimesHarrietMcLeodofRidgefieldWash.likestobeservedintheReflectionselegantdiningroom.MealtimeisanopportunityforHarrietandherroommateDianaMasontodineonsomefabulousdishesandsharestorieswithothers.Ivereallyenjoyedit.ImwaitedonandIdonthavetocleanupaftermyselfHarriettsayswithalaugh.DespitelosingherhusbandandcarepartnertwoyearsagoshecontinuestotrynewexperiencessuchasgoingonacruiseHarrietlearnedaboutthecruisefromMichaelCastiglioneofHillsboroOre.duringaMS-relatedinternetchatroomdiscussion.Michaelwasdiagnosedtwoandahalfyearsagoattheageof50.HeKwameandCharmaineHarrietMcLeodandDianaMason MSFocusSpring201443tellshisfriendswhoexpressconcernIamcorrectlydiagnosedandproperlytreated.Michaelpurchasedthecruiseforhimselfandrecently-marriedfriends.HeshappytobeexploringtheportswiththemandsaysTheMSinfoisabonus.AsabonustoallmassagetherapistMarthaC.RojasofPembrokePinesFla.donateshertimeandtalentsbyproviding15-minutemassagestoMSFprogramattendees.MarthahascomeasaguestoftravelagentGabrielaAragonofAragonTravelMiramarFla.thebookingagencyfortheMSFcruise.GabriellaandherhusbandAlejandroareonboardtoassistMSFcruiserswithquestionsandconcernsandtoofferhelpfuladviceaboutgettingaroundonandofftheship.AndtohavefuntooYearsoftravelingwithdaughterCarrieannaHesshastaughtJeriMurphythatcarefulplanningwithtravelexpertssuchasGabrielaminimizesexcursionhassles.DuringsevenhoursinSanJuanthedynamicduotransitionwitheasefromtheshiptoabustourofnewandoldSanJuanandtotheLatinTraditionsShowallbecausetheymadesureinadvancethatthedestinationsandtransportationcouldaccommodateCarrieannaswheel-chairandmobilitylimitations.Jeridescribesmoreabouttheircruiseexperiencesonheraccessibletravelblogathttpanythingispossibletravel.com.Ofcourseonehighlightofthecruisewastheopportunitytomeetnewpeopleandbuildrelationshipsthatwilllastalifetimeshewrites.CarrieannamademanynewfriendsencouragingandinspiringthemwithhercandoattitudeandlaughinguntilhersidesachedandherdimpleswerepermanentlyindentedJimandDencyDokoozianalsojoinmanyshoreexcursionsincludingonethattakesthemunderwaterforasnubadiveacrossbetweenscubadivingandsnorkeling.ItsafirstforDencyTheCaribbeanbringsawelcomedchangeofclimateforthecouplefromAnchorageAlaska.ThecruisehasbeenevenbetterthanweexpectedJimsays.TheDokooziansespeciallylikethepresentationsbyneurologistDr.JackBurkswhodiscussesthelatestindisease-modifyingtherapiesincludingprogressiveMScomplementaryandalternativemedicineandstepstobetterhealthwellnessandhappiness.Seeallprogramsandspeakersonpage45. 44MSFocusSpring2014LiketheDokooziansAlbertandLaureneStalkerappreciateaccesstothelatestMSresearch.AlberthasbeendiscouragedsincethelastneurologisttoldhimTheresnothingIcandoforyou.HearingthespeakersandtalkingwithothershasmotivatedAlbertwhoshadMSfor15yearstobemoreproactiveinseekingbetterhealthcare.Nowawareofstrategiesthatmayhelphesexcitedtovisitanewneurologistinhishometownonerecommendedbyafellowcruiser.ThishasopenedhimupsomuchandheshavingfunonthesideLaurenesays.DidsomeonesayfunSurfsupintheSkyObservationLoungeasMSFcruisersgatheronelasttimeforthefarewellreceptionandonboardbeachparty.Manysportbrightly-coloredtropicalshirtsfortheLoudestShirtContest.BarbaraMcAllisterCarrieannaHessandBettyGibsonalltakehomeaKindlefortheirflashyturn-up-the-volumeoutfits.Amidstthefunandcocktailscruiserssharestoriesexchangecontactinformationandreflectontheirexperiencesatsea.LauraandMikeYatesfromClarksvilleTenn.wearingmatchingHawaiian-styleoutfitstalkabouttheadvantageofbeingwithotherswhocanunderstandtheperilsoftravelingwithMS.Mikecelebratedhis40thbirthdaywithnewfriendsontheReflection.WelearnedalotaboutthediseaseLaurasaysnotingthatMikewasdiagnosedlessthanayearago.AndwealsoenjoyedmeetingGailandBettyGibsonandmanyothers.MikeandLaurawillbeamongmanyothersreturningforthe14thAnnualMSFCruiseforaCauseaseven-dayjourneytoexoticportsintheSouthernCaribbeaninFebruary2015.ButonthisdaytheresonemoreeveningtoridethewaveastheReflectionplowshomeward.Moretimeforalastmealamongnewfriends.CruiserssuchasJodiCooleyknowhowtomakethemostofeachminute.ThisformerdanceractressandsingerfromLosAngelesCalif.hasbeenanightlyfavoriteatthekaraokelounge.Bydayduringtheyogaandexercisesessionsshesbeenfrontandcenterworkingthemoveslikeapro.ThankyousomuchtotheMSF.Ivebeenlookingforsomethinglikethiscruise.Ihavebeenstrugglingwithexerciseandthisreallyhelpsshesays. 45MSFocusSpring2014Jodiscruisepartnerisherfather.Unexpectedlythisvacationtogetherhasstrengthenedtheirfather-daughterbondashesharedwithherhislifestories.JodismotherhasMStoo.IvehadthisdiseaseinmylifesinceIwasachild.Mymotherwasdiagnosedin1978butsawthefirstonsetofsymptomsintheearly70s.IknowthisdiseasefromthepointofviewofachildcaretakerpatientmotherandspouseJodisays.IamalsogratefulthatwithtodaystechnologyanddrugsMSoftodayisnottheMSofmymotherstime.SharinglifeexperienceslearningmoreaboutMSconqueringfearsandmakingnewfriendsthebenefitsoftheMSFcruiseareendlessThesecruiserscankeepridingthewavelongaftertheirjourneyatseahasended.ProgramsandSpeakersofthe13thAnnualMSFCruiseforaCauseSpeakerProgramJackBurksM.D.ChiefMedicalOfficeroftheMultipleStepstoBetterHealthWellnessandHappinessSclerosisAssociationofAmericaCherryHillNewJerseyOneNeurologistsPerspectiveandPresidentofBurksAssociatesHealthCareComplementaryandAlternativeMedicineCAMEducationConsultantsRenoNevadaMSDiseaseTherapyUpdateincludingPrimaryProgressiveMS.LauraMcCattyRNBSNMSCNLaurahasclinicalTheBalancingActoftheCarePartnerexperienceasaMSnurseinFloridafor12yearsandFactsFallaciesofNutritionMS.earnedthespecialtycertificationMSCNin2003.MattMcCattyMarkisaleadershipdevelopmentconsultant.CommunicatingEffectivelyforPositiveRelationships.JeffreySegalBSNSCA-CPTCSCSCPTSCPRAEDExerciseFundamentalsforPeopleJeffisapersonaltrainerinBocaRatonFla.andawithMultipleSclerosisnationalmotivationalspeakerandpresenter.ExerciseModalitiesforAllTypesofMS.NickMarchesaniNickisaZumbainstructorZumbainChairsMSFAmbassadorandsupportgroupleader.MindyEisenbergMHSAE-RYT-500MindyisayogaYogainChairstherapistwithovernineyearsexperiencehelpingindividualsRelaxationimproveandmaintainhealththroughthepracticeofyogaMeditation.GailGibsonPh.D.PGCPGREPGailisanAdjunctThirdRockfromtheSunProfessorofGeologyandEnvironmentalSciencesatAWorldofIslands.FloridaStateCollegeatJacksonville.ProgramsareavailableontheMSFsYouTubeChannel 46MSFocusSpring2014ByEllenWhippleGuthrieBSPharmPharm.D.UpdatesbythePharmacistspotlightsthelatestsignificantresearchonMSmedicationsaswellaspharmaceuticalissuessignificanttoMScare.Noendorsementisimplied.ThepatentforCopaxoneisscheduledtoexpireinMay2014.AtthistimeagenericformofglatirameracetateisexpectedtobeapprovedbytheUnitedStatesFoodandDrugAdministrationFDA.Becausethecurrentlyapproveddisease-modifyingtherapiesDMTsincludingCopaxonehaveyearlypricetagsofgreaterthan60000peryearamoreeconomicalDMTwouldbegreatlyappreciatedbymanypatients.HoweverpriceshouldnotbetheonlyconsiderationwhenchoosingbetweenCopaxoneandagenericproduct.WillthegenericproductbeexactlythesameasCopaxoneandwillthegenericproductbeasefficaciousasCopaxoneThisarticleaddressesthecomplexitiesassociatedwithagenericformofglatirameracetate.Theoverwhelmingmajorityofmedica-tionsavailableintheUnitedStatesareclassifiedassmallmolecules.TheseproductsgainapprovalfromtheUnitedStatesFDAthroughtheNewDrugApplicationNDAprocess.Developinggenericsforsmallmoleculedrugsisarelativelysimpleprocess.OncethepatentexpiresforthebrandnameproductpharmaceuticalcompaniescansubmitanabbreviatedNDAANDAtogainapprovaltomarketagenericproduct.TheANDAprocessdoesnotrequiregenericcompaniestorepeatcostlyanimalandclinicalresearchoningredientsordosageformsalreadyapprovedforsafetyandeffectiveness.Notsurprisinglygenericproductsarerequiredtohavethesameactiveingredientsstrengthdosageformandrouteofadministrationasthebrandnameproduct.Genericproductsarenothoweverrequiredtohavetheexactsameinactiveingredientsasthebrandnameproduct.Allgenericmanufacturingpackagingandtestingsitesmustpassthesamequalitystandardsasthoseofthebrandnamemedicationandthegenericmedicationsmustmeetthesameexactingspecificationsasanybrandnameproduct.Biologicdrugsontheotherhandarelargeproteinsthatrequirelivingmaterialsforproduction.Biologicsdifferfromsmall-moleculedrugsduetotheirsizeandcomplexitymultifacetedmanufacturingprocessandtheirpotentialtocauseanimmuneresponse.ExamplesofbiologicsincludeinterferonproductsbloodproductsvaccinesrecombinantproteinsgenetherapiesGenericGlatiramerAcetate MSFocusSpring201447andantibodies.Whenpatentsexpireforbiologicdrugsbiosimilardrugscanenterthemarketplace.Itisimportanttonotethatbiosimilardrugsarenotgenericdrugs.Theobjectiveofabiosimilardevelopmentprogramistomanufactureaproductthatishighlysimilartothebrandnameproductviaareverseengineeringapproachsuchthattheresultingproductnotonlyhasasimilarprimaryaminoacidsequencebutalsoretainsmodificationsthatareassimilaraspossible.InordertobeapprovedbytheUnitedStatesFDAbiosimilarproductsmustbeproventobeasefficaciousasthebrandnameproduct.UnlikesmallmoleculedrugsbiologicsareapprovedbytheFDAthroughtheBiologicsLicenseApplicationprocess.WhenCopaxonewasoriginallyapprovedbytheFDAitwasapprovedusingtheNDAprocessthereforeCopaxoneisconsideredasmallmoleculeproduct.MorerecentlytheFDAhasreferredtoCopaxoneasapseudo-biologicmedication.GiventhecomplexityinmanufacturingCopaxoneTevaPharmaceuticalsthemanufacturerofCopaxonebelievesunpredictabledifferencesbetweenaproposedgenericproductandCopaxonecouldleadtoanimmuneresponseinsomepatients.InJuly2013theUnitedStatesCourtofAppealsinvalidatedseveralofCopaxonespatentsandpavedthewayforthereleaseofgenericglatirameracetate.ButthisdebatemaynotbefinalandwillmostlikelyrequireclarificationbytheFDAorendupbackinthefederalcourts.AsrecentlyreportedinPlosOneinvitrodatadataincellsnotinhumanssuggeststhatgenericglatirameracetatemaydifferfromCopaxone.ThisstudywhichwassponsoredbyTevaPharmaceuticalsfoundthatCopaxoneincreaseslevelsofFOXP3moreconsistentlyandefficaciouslythangenericglatirameracetate.FOXP3isakeyfactorthatcontrolsthedevelopmentandfunctionofregulatoryT-cellswhichmayhelpsuppressharmfulautoimmunityinmultiplesclerosispatients.ItisimportanttonotethattheextenttowhichthisdifferentialimpactonregulatoryT-cellsmightaffectpatientsresponseisunknown.InadditiongenericglatirameracetatealsoincreasedtheexpressionofgenesassociatedwithmyeloidlineagecellssuchasmonocyctesandmacrophagestoagreaterextentthanCopaxone.Thesecellsplayanimportantroleintheimmunesystemsofhealthypeoplebutcanalsocontributetotheworseningofrelapsing-remittingmultiplesclerosisRRMS.WithoutclinicaltrialstheextenttowhichtheincreasedimpactofthepurportedgenericglatirameracetateonmyeloidcellsmightalterclinicaloutcomesinRRMSpatientsremainsunknown.Theseresultscanbehardtointerpretsincetheyareincellsandnotinhumans.Theclinicalsignificanceofthisstudyisunclear.InsummaryCopaxoneisthemostprescribedDMTformultiplesclerosis.Howeveritcomeswithanexpensivepricetag.ThepatentforCopaxonewillexpirein2014andagenericbiosimilarproductmaybeapprovedbytheFDA.ConcernsregardingthesimilarityofCopaxonetogenericglatirameracetatestillexist. MSFocusSpring201448ReferencesChoyEJacobsIA.Biosimilarsafetyconsiderationsinclinicalpractice.SeminarsinOnocl.201441S3-S14.Anon.TevasCOPAXONEpatentappealtogounheardMay2014genericlaunchprospectsdebated.AccessedMarch82014.Anon.Whataregenericdrugs.FDAWebsite.AccessedMarch82014.Anon.DatademonostrateskeygenesresponddifferentlytoCOPAXONEglatirameracetateinjectionversusapurportedgenericglatirameracetate.TevaWebsite.AccessedMarch82014.EllenGuthriehasbeenamedicaladvisorwiththeMSFsince2002.SheisaclinicalpharmacistemployedasamedicalaffairsspecialistaswellasanAssistantClinicalProfessorattheUniversityofGeorgia.ShereceivedherDoctorateofPharmacydegreefromtheUniversityofGeorgiaCollegein1994andwaslateremployedattheShepherdCenterandChildrensHealthcareofAtlanta.EllenisanactivememberoftheGeorgiaSocietyofHealthSystemPharmacists.ShehasalsoservedonthePharmacyAdvisoryCommitteefortheDepartmentofCommunityandHealth.TM MSFocusSpring201449ByJoanneFortunatoAlmostalloftodaystechnologicaldeviceshaveaccessibilityfeaturesthatmakeiteasierforpeoplewhohavedisabilitiestousethefullrangeoffeaturesofthatparticulardevice.Thesecanrangefromenlargedtextsizeforthosewithvisionissuestovoiceinputforthosewithfinemotorissuesthatmaketypingdifficult.Devicesgenerallyhaveanaccessibilityoptionfoundinsystemsettingsorpreferences.Thefeaturesinthisarticlewillbedividedintocategories.Thecategorieslistedarenotnecessarilymedicalorrelatedtoamedicaldiagnosisbutrathertheyareforhelpingyougetthemostoutofyourequipment.GeneralAccessibilityThefollowingoptionsareuniversalinthattheyarefoundonalmostallnewerdevices.Devicesolderthanaboutfouryearsmightnothavetheseaccessibilityoptionsanditishighlyrecommendedtoupdateyourdevice.Inadditionitisimportanttohaveacurrentoperatingsystem.Thisisgenerallyfoundinsystemsettings.EnlargingtheDisplayScreenDisplaysizeisgenerallymeasureddiagonally.Therangeofsizeisgenerallyfrom7to27inchesdependingonthetypeofdevice.Ifyourdeviceisportablesuchasatabletorphoneitcanbeviewedinportraitorlandscapemode.MostnewdevicesareHDHighDefinitionwhichmeansthattheresolutionorclarityofthedisplayisveryhigh.Onmosttabletsorphonesyourviewcanbeenlargedbyasimplepinchinggestureonthescreen.Ifyourdisplayisnottouchactivatedyouwillneedtouseakeyboardmouseorothertoolforthistask.Thiscanusuallybefoundinthelowerrightsideofanopenwindow.Eitherwaythisfeatureiseasytoaccess.VoiceInputandOutputVoiceinputmeansthedevicerespondstoyourvoiceandexecutesthecommandyouspeak.Voiceinputfeaturesareavailableonmostnewdevices.Thisfeaturecanbeinteractiveandrespondtoquestions.ApplesinventionofSirihasmadethisfeaturealmostuniversal.Ifitisnotafeaturethatisbuiltintoyourdevicetherearefreeappsandorsoftwareavailable.Younolongerhavetoteachyourdevicetorecognizeyourparticularvoice.Thisprocessisseamlessandincrediblyaccurate.YoucanaskquestionsandgetAccessibilityFeaturesatYourFingertips 50MSFocusSpring2014theanswerfromanautomaticwebsearch.Theinventionofartificialintelligencecreatesahuman-likeinteractionwithyourdevice.Ascompetitionincreasesthisfeatureisbecomingmorepopularandavailable.Voiceoutputreferstoyourdevicereadingtextgraphicsandotherdisplayeditemsaloud.Unliketheinteractivevoiceinputthevoicesinthisfeaturearegenerallymorerobotic.Thetechnologyofvoiceoutputisnotaswelldevelopedasvoiceinput.Voiceoutputisoftenreferredtoastext-to-speech.Whilethisisthemostcommonuseofthistypeoffeaturetherearemanyotheroptionsavailable.Onesuchoptionisavoice-over.Thevoice-overfeatureisespeciallygoodforblindorlowvisionusers.Whenthevoice-overfeatureisturnedoneachobjectthatyoutouchorpassoverisdescribedaloudasyounavigatethescreen.Thisfeatureoftenhasaverymechanicalsoundingvoice.Howeverthereareusuallysomeadjustmentsyoucanmaketoimprovethevoicesuchasspeedandpitch.Thiswillimprovethesoundbutitwillprobablystillsoundrobotic.OtherUsefulFeaturesWithtechnologybecomingsonecessaryforeverydaylifeyouwillfindmoreaccessibilityfeaturesbeingdevelopedallthetime.Thefollowinglistdescribessomeofthecommonaccessibilityfeaturesyouwillfind.Usuallyyoufindthesefeatureslistedundersystempreferencesoraccessibilityfeatures.Becausetherearesomanydevicesspecificdirectionsarenotlisted.InputandNavigationThereareseveralwaystonavigateamouseatrackpadakeyboardandtouchsensorstonameafew.Whileyoucanuseyourfingersontouchsensitivedevicestherearestylusesthatmakeiteasier.Inadditiontheyaregenerallymoreaccurateandhelpkeepthescreenclean.Theyareveryinexpensiveandcanbepurchasedalmostanywheretechnologyissold.Ifyoufindthatthedisplayscrollstoofastorthedeviceistoosensitivewhenyouselectsomethingthereareawidevarietyofadjustmentsyoucanmake.Thisisespeciallyusefulifyouhavefinemotorissues.Ifyouarenotabletouseanyoftheseinputnavigationtechniquestherearealternativesbutinthescopeofthisarticletheywillnotbeaddressed.ContrastandDisplayColorsContrastisaveryimportantfeaturethatisoftenoverlooked.Increasingdecreasingthecontrastisaneasywaytocustomizethedisplaytomakeitcomfortabletoview.Thelesscontrastyouhavethebetteritisforbatterypower.Setthecontrasttothelowestlevelthatiscomfortableforyou.Mostdisplaysautomaticallyhaveawhitebackgroundanddarktext.Invertthisdefaultandhavethebackgrounddarkandthetextbright.Inadditiontohelpingthosewithvisionissuesthisfeaturecancuttheglareofawhiteback-groundandmakeiteasiertouseyourdeviceinadarkroom.ThisoptionisnotavailableonallAndroiddevices.Ifitisthereyouwillfinditintheaccessibilityfeatures.AlliOS7Appledeviceshavethisfeature. 51MSFocusSpring2014JoanneFortunatoB.S.M.A.isaretiredcomputertechnologyteacherinTroyN.Y.ShehasamastersdegreeinEducationandhasbeenteachingtechnologytoteachersandstudentsfor30years.ShehaspublishedseveralarticlesandbooksoneducationalcomputertechnologyincludingseveralarticleswiththeInternationalSocietyforEducationISTE.ShewasdiagnosedwithMSin2006andusestechnologytoaidincopingwiththemanydifficultiesthatMScanpresent.Sheisexcitedtosharethisinformationwithothersthatdealwiththesameandmanyotherissuesonadailybasis.ThebestplacetostartfindingouthowtousethefeaturesmentionedinthisarticleisaUsersGuide.Youwillalsoprobablyfindotherusefulfeaturesnotmentionedhere.TofindyourUsersGuidesearchtheInternetforYourDeviceUserManualsubstitutingthenameofyourparticulardeviceinthesearchbox.Inmostcasesthiswillyieldgoodresults.AnotherplacetolookistheSupportPageofthemanufacturerofyourequipment.Ifyouarestillunderwarrantyyoucanoftenchatliveonlinewithatechnician.Thereisaplethoraofinformationavailableaboutaccessibletechnology.Afewusefulresourcesarelisted.Howeveritiswellworthyourtimetolookforinformationaboutanyspecificissuesthatyoumaywanttoexplorefurther.RoyalNationalInstituteofBlindPeopleRNIBhttpwww.rnib.org.ukPagesHome.aspxThissiteforblindorpartiallysitedpeoplehasalotofvaluableinformationincludinginformationonassistivetechnology.TypeBeginnersGuidetoAssistiveTechnologyinthesearchboxandclickonthetoplink.MSSocietyhttpwww.nationalmssociety.orgTypeAssistiveTechnologyinthesearchboxonthemainpage.Thissitecontainsmanyoptionsforusingyourdevicebutitalsogivesideasthatincludethirdpartyoptionsdevelopedespeciallyfortheissuethatyouareresearching.AppleiOSDevicesiPhoneiPadhttpswww.apple.comTypeiOSAccessibilityinthesearchboxandclickonthetoplink.Microsofthttpwww.microsoft.comTypeAssistiveinthesearchboxandclickonthetoplink.Chooseyouroperatingsystemontheleftsideofthescreen.NoteBecausetherearemanymanufacturersthatproduceAndroidtabletsphonesandotherdevicesitwasdifficulttofindonesitethatwashelpfulforpeoplewithdisabilities.Itisrecommendedtoexploreoptionsforyourparticulardeviceonthemanufacturerswebsite.Resources 52MSFocusSpring2014MSCountswasourthemefor2014NationalMultipleSclerosisEducationandAwarenessMonthNMSEAMinMarch.AsthoseintheMScommunityknowtheeffectsofmultiplesclerosisonindividualstheirlovedonesandsocietycanbeprofoundyesMScounts.ThatswhyduringMarchweencouragedthosewithMStostandupandbecountedbyeducatingothersaboutMSparticipatinginfundraisingactivitiesorbecominganadvocate.CongratulationstothethousandsofpeopleacrossthecountrywhojoinedusinspreadingMSawareness.WeappreciatethetimeandenergyyouspentinhelpingusdeliverourNMSEAMmessage.ManyofyouansweredthecallbyparticipatingintheNorthAmericanResearchCommitteeonMultipleSclerosisNARCOMSaglobalregistryforMSresearchtreatmentandeducation.Forthosewhodidntitsnottoolate.Formoreinformationgotohttpnarcoms.orgorcalltoll-freeat1-800-253-7884.OthersincludingmembersoftheMSFIndependentSupportGroupNetworkworkedtirelesslytodistributeourAwarenessKitswhichcontainedinformativefactsheetsontopicsrelatedtotheMSCountstheme.OurteleconferencesbroughtMSexpertsintohomesacrossthenationwithonequickphonecallorinternetconnection.Ifyoumissedthemdontworryyoucanfindaudiorecordingsofalltheteleconferencesbygoingtoourwebsiteatwww.msfocus.organdclickingonOnDemandAudio.HerestheselectionofMarchteleconferencesTheAffordableCareActandMSDanielKantorM.D.NeurologistAdheringtoYourMSTherapyAaronBosterM.D.NeurologistAnMSersGuidetoHealthandHappinessDr.ElizabethKingLCSWCHtWellnessExpertMSFontheRoadMSFontheRoadforAwarenessMonthforAwarenessMonthTheMSFstaffwasinhighgearthroughoutthemonthofMarchbringingfunandinformativeprogramstocitiesandtownsacrossthecountry.AsalwaysMSFamilyDayatDaveBusterswasacrowdfavoritehappeningthisyearinWestNyackN.Y.OmahaNeb.OklahomaCityOkla.KansasCityKan.BoiseIdahoandMapleGroveMinn.TheDaveBusterseventsofferedfunfortheentirefamilyaskidsplayedinthearcadegrown-upssocializedandeveryoneenjoyed 53MSFocusSpring2014acomplimentarymeal.ThisyearsprogramincludedashortpresentationbyMSFstaffaboutMSFprogramsandservices.OurmessageYoucancountontheMSFAttendeesoftheMSFamilyFunDayatDaveBustersinKansasCityonMarch22sawasurpriseadditiontotheprogramEricSchenckPresidentMSFBoardofDirectors.WhileinattendancehetooktheopportunitytosharehispassionfortheorganizationwithallpresentfirstaddressingthecrowdtokickofftheprogramandlatergreetingeachattendeeindividuallytothankthemforcomingandencouragingthemtoreachouttotheMSFwhentheyareinneed.ParticipantsinNyackN.Y.gotmorefunthantheybargainedforwhenMSFAmbassadorsupportgroupleaderandcertifiedZumbainstructorNickMarchesanibrokeouthismovesandgotthegrouptotrysomeZumbainChairs.OnMarch29inMapleGroveMinn.justoutsideMinneapolisasmallyetdiversegroupturnedouttoenjoytheMSFamilyFunDayatDaveBusters.TherewerethosenewlydiagnosedandthoselivingwithMSforyears.Somebroughtfamilyormetupwithfriendswhileotherscameontheirown.AllhadquestionsandlearnedsomethingnewabouttheresourcesavailabletothemthroughtheMSF.IspokeatseveralprogramsduringMarchbutthemosttouchingmomentformehappenedinMapleGrovesaidMSFsDirectorofOperationsKaseyMinnis.WhileIwasspeakingInoticedamemberoftherestaurantsstaffstandinginthebackoftheroom.AttheendoftheprogramsheapproachedmeandAlmaHenryMSFsHealthWellnessProgramCoordinator.ShesaidIwantyoutoknowhowmuchIadmirewhatyoudoandbegantocry.ShecontinuedMygrandmotherpassedawayfromthecomplicationsofMSIonlywishmygrandfatherhadknownabouteverythingyouofferwhentheyweresomuchinneed.ThatreallydrovehometomehowimportantitisforustohosttheseprogramswherefamiliesaffectedbyMScanlearnaboutthevitalhelpweoffer.KaseyMinnisMSFDirectorofOperationsPatsySchenckEricSchenckandKaronShandMSFCaseworker.TheWestlingandIvesFamiliesoldfriendswhohappentobeaffectedbyMSmetupattheMapleGroveMinn.event. 54MSFocusSpring2014MSFAmbassadorsoureyesandearsinlocalcommunitieseverydayoftheyearareespeciallyhelpfulduringNMSEAM.OntheoutskirtsofSavannahGa.andsittingjustsouthoftheSouthCarolinabordertheprogramonMarch7inthetownofPortWentworthdrewacrowdfrommilesaround.AfterapresentationontheMSFsprogramsandservicesbyourstaffHowardChristieofJHAssociatesInsurancespokeabouttheissueonsomanypeoplesmindstheAffordableCareActandhowitaffectsthosewithMS.ThenmembersofTheInfluencedMSSupportGroupledbyMSFAmbassadorLottikaGwynntookovertheprogram.TheyentertainedtheattendeeswithdoorprizesandgamesandmovedthemtotearsandcheersasfourmembersofthegroupsharedtheirpersonalstoriesoflivingwithMS.MSFambassadorsinothercommunitiesalsosharedwhattheyhavelearnedaboutbeinganMSadvocateinMSCountsLettingYourVoicebeHeardMichelleClosDallasTexasTimCarrSanDiegoCalif.andLoriRousseauStevensPointWis.OurMSFambassadorsdoanamazingjobofinspiringotherstogetinvolvedPicturesfromtheSavannahprogramweretakenbyChozenGraphicsandDesign.ThankyoutothefollowingcompaniesfortheirsupportofMSFsMarchEducationandAwarenssactivitiesBiogenIdecInc.GenentechandTevaPharmaceuticals.2014NMSEAMInitiativeMSAwarenessMakeitCountwinnerCynthiaWnekandherSt.ThomastheApostlechurchgroupfromMuskegonMich.ThispicturewassponsoredbythechurchsKnightsofColumbusgroup. 55MSFocusSpring2014RoundingouttheEducationalProgramsontheRoadRoundingouttheEducationalProgramsontheRoadMarch6TampaFla.MSandWomen-ManagingHealthandPregnancyByMariaHoutchensM.D.DirectorofWomensHealthProgramPartnersMSCenterBrighamandWomensHospitalAssociateProfessorofNeurologyHarvardMedicalSchoolMarch17StoneMountainGa.TheImportanceofAdheringtoYourMSTherapyByColbyDoepelNP-CShepherdCenterAtlantaGa.March19CollegeParkGa.2014MSUpdateBySherrillLoringM.D.NeurologistShepherdCenterMarch20PeachtreeGa.2014MSUpdateByKimMiechielsPA-CShepherdCenterFundraisersCountonGivingFundraisersCountonGivingCheckoutRegionalEventsonpage56tolearnmoreaboutterrificNMSEAMfundraisersthatbenefitedtheMSF.YoulllearnmoreabouttheseawesomeeventsinthenextissueoftheMSFocusStrutforMSAwarenessFashionShowMarch72014inBrooklynN.Y.-ThisfashioneventfeatureddesignsfromBEBEHMandtalentedlocaldesigners.SingSwing2014March82014inAuburnHillsMich.-GoodtimeswithkaraokedancingrefreshmentsdrinkspecialsrafflesandmoreThereisstrengthinnumbersThoughNMSEAM2014isoverletscontinuetogrowstrongertogether.BecountedandletothersknowthatMSCounts.TofindoutiftheMSFwillbevisitingyourlocalcommunitystayconnectedviaourFacebookpageatwww.facebook.comMultipleSclerosisFoundation.TheEducationContinuesTheEducationContinuesEducationalopportunitiesfromtheMSFcontinuethroughouttheyearincludingamonthlyteleconferenceseries.Designedtokeepyouup-to-dateonthelatestinMSinformationtheseeducationalsessionsareeasytojoin.Noregistrationisrequired.Atthetimeofthecallsimplydial888-560-5502andentercode23441168.Toviewthepresentationgotohttpswww.spiderphone.com23441168.Joinusat830p.m.ESTfortheseeducationopportunitiesMay20AsktheDoctorQAAaronBosterM.D.NeurologistJune18MSResearchUpdateDavidJonesM.D.NeurologistJuly22TamingYourMSSymptomsAnnetteOkaiM.D.NeurologistIfyouwouldliketoreceiveanemailreminderofeachmonthsteleconferencejointheMSFAnnouncementsMailingListbyemailingSubscribetoannouncementsmsfocus.org 56MSFocusSpring2014JerseyMikesSubsandMultipleSclerosisFoundationAnExtraordinaryMSConnectionWhenJerseyMikesSubsRegionalMarketingDirectorHillaryHutchinsoncalledtheMSFlastOctoberlittledidweknowthatournewestneighborwouldbecomeoneoftheMSFsmostpassionateMSFConnectpartnersMSFConnectistheFundDevelopmentDepartmentscorporateoutreachprogramaimingtoconnecttheFoundationtobusinesseslookingtoexpandtheirphilanthropicopportunities.NationalrestaurantchainJerseyMikesSubsisstronglyrootedingivingbacktothecommunityitjustseemednaturalwhentheymovedinnextdoortoourFortLauderdaleheadquartersthattheirgrandopeningwouldincludeabenefitfortheFoundation.ManycelebritiesincludingOlympicgoldmedalistboxerHowardDavisJr.fashiondesignersRichieCatilusandKesiCaseandperformingartistonNBCsTheVoiceMoniqueAbbadieTeamShakiraattendedVIPNightonDec.92013tosupportagreatcause.SongbirdMoniquevolunteeredtohelpoutbehindthecounterexpeditingfoodordersandevenbreakingintosong.ThecelebrationcontinuedallweeklongwithJerseyMikesdistributingcouponsthatofferedpatronsafreesuborsaladfora2donationtotheMSF.MarchwasJerseyMikesSubsannualMonthofGiving.TalkaboutagreatsandwichcomboTheFoundationscollaborationwithJerseyMikescontinuedin2014withtwolocalSouthFloridarestaurantshelpingtospreadthewordaboutMSFsannualNationalMultipleSclerosisEducationandAwarenessMonthNMSEAMcampaign.OnMarch13employeesandcustomersofJerseyMikesSubsinParklandFla.hostedaNMSEAMhalf-way-thereparty.OnceagaininattendancewereOlympicchampHowardDavisJr.andthelovelyMoniqueAbbadieplusMiamiradiosownChanelDJat93.9WMIAandMEGA94.9.AlsoonthemenuwasanadditionalFortLauderdalefundraiseronMarch26byHildyBerger 57MSFocusSpring2014thecompanysannualDayofGivinginwhich100percentofallsalesaredonatedtotheircharitypartner.JerseyMikesmarketingfolksenticedlocalbusinessestostopbyandshowtheirsupport.Companiesthatbroughtin15to25peoplegotacateringboxforlunch26to35employeesearnedthreeboxeswithchipsandcookiesandtherewardforbringinginatleast40peoplewasasix-footsub.AspecialshoutouttoHillaryHutchinsonandtheParklandandFortLauderdalerestaurantsstaffwhosehardworkdedicationandincrediblegenerositymadeallofthesefantasticfundraiserspossibleFinaltally13600towardsMSFprogramsandservicestoassistpeoplewithMSVolunteerSpecialEventsNovember202013Blue1NYCTrunkShowinNewYorkN.Y.TakingplaceintheEdwardianSuiteattheiconicPlazaHotelintheheartofNewYorkCitythisupscaleshoppingadventureofferedcustomers20percentoffdesignerapparelandjewelryjustintimefortheholidaysThankyouJarretWillisandCrystalSmithco-ownersoftheBlue1Boutiquefortheir525donationrepresenting10percentoftotalsalesfromthisglameventDecember212013GingerbreadforaCauseinSpartaN.J.Despiteasnowstormthatbumpedthiseventtoaweeklaterthanoriginallyplannedtherewerelotsofhappyparty-goersonhandatTheJuniorWomansClubofSpartasannualGingerbreadforaCausefundraiser.ActivitiesincludedagingerbreadhousecontestholidaycraftsabakesaleandavisitbyaveryspecialguestSantaClausThankyouYvonneBabbitco-chairpersonoftheeventandeveryoneatJWCSfororganizingthisfestivefundraiserwhichraised1967fortheMSFJanuary252014CRUISE-INCarShowtoBenefittheMSFPuntaGordaFla.HostedbyMSFsLivingWellwithMSSupportGroupthisfundraiserwasfreetothepublicandopentocarsandtrucksofanyyearDashplaquestrophiesdoorprizeslivemusicandmoredrewanenthusiasticcrowd.CapeCoralSupportGroupleaderMarthaHanniganwasalsoinattendancedisplayingbeautifulhand-craftedpursesandotheruniqueSewPrettyitemsprofitsfromSewPretty MSFocusSpring201458salesbenefittheMSF.ThankyoutosupportgroupleaderNikkiChouinardandRickTreworgyatMuscleCarCityforcoordinatingthisfree-wheelineventwhichraised500fortheMSFFebruary22232014BobEvansDinetoMakeaDifferencevariousMichiganlocationsBigThankYoutoJenniferSmolkaDaveBankerandScottShinabargerforreachingouttotheMSFandhelpingtocoordinateaDinetoMakeaDifferencefundraiser15percentofquartsoupsalesfortwofulldaysat12participatingrestaurants.Membersoftherestaurantstaffweredeckedoutinoranget-shirtsandaccepteddonationstotheMSFwhiledishingouthothomemadecomfortfoodtowinter-wearydinersonthegoAtotalof1657.75indonationswascollectedFlippingForaCause-PancakesthatisTocommemoratebothNationalMultipleSclerosisEducationandAwarenessMonthandinmemoryofEricLeonthestaffofBrightHorizonsFamilySolutionsDiscoveryPre-SchoolCenterinBocaRatonFla.conducteditsPancakeBreakfastSale.ThisfundraiseristhelatestinalongseriesofannualschooleventstosupportMSFprogramsandservices.At1283broadparticipationbystaffparentsgrandparentsandchildrencontributedtoyetanothersuccessfulevent.Itwasfillingandfun.ThanksDiscoveryHildyBergeristheMSFsFundDevelopmentCoordinator.IfyouareinterestedinplanningafundraisingeventorwouldlikemoreinformationcontacttheMSFFundDevelopmentDepartmentat800-225-6495orsendanemailtohildymsfocus.org.FormoreinformationabouttheseeventscontactNathalieSloaneat954.776.6805ornsloanemsfocus.orgMediaInquiriesAdrienneMazzoneTransMediaGroupat561.750.9800 MSFocusSpring201459SightsattheZOOWrittenByDebbieEstremIllustratedbyKimSponaugleXlibrisLLC2013ToborrowthisandothertitlescalltheMSFLendingLibraryat1-888-MSFocus673-6287orvisitwww.msfocus.org.ClickonLendingLibraryundertheProgramsandActivitiesheading.ChildrenwillloveSightsattheZooforitslargeexpressiveandcolorfulillustrationsoffamilieshavingfunatthezoo.Adultswillbehappytofindabookthatnotonlykeepsyoungreaderscaptivatedbutalsoteachesthemimportantlessonsaboutrelatingtootherchildrenoradultswithdisabilities.ThestorylineissimpleAuntSusiecomestovisitandMomwithanewborninherarmsdecidesitstimetodosomethingnew.Letspackupthecarshetellsherkidsandheadtothezoo.Intheirquesttoseemanydifferentanimalsatthezootheyencounterpeopleofallagesusingaidssuchaswheelchairsandwalkerstohelpthemgetaround.Thechildrenarecuriousandaskmanyquestionsaboutassistivedevicesandthepeoplewhoneedthem.AuntSusieandMomarequicktoagreewhentheyoungsterscommentthatthepeopleusingthedevicesarehavingagreattimejustlikeeveryoneelse.WhenthechildrenwanttohelptheothersMomandAuntSusiepointoutthattheothersaremanagingjustfineontheirownorwiththehelpoftheirlovedones.Itsanodtorespectingotherspersonalspaceandadesiretobeself-reliant.Buttheadultsalsonotethatthinkingofwaystohelpothersisagoodthing.SightsattheZoowaswrittenbyDebbieEstremwhowasdiagnosedwithMSin2010.TheinspirationforthebookcameduringanoutingwithherdaughterCassiElizabeth.SheexplainsDuringawonderfulMothersDaybrunchCassiandInoticedayounggirlwhoseemedunsureastowhatshewasseeingwhenshesawmesittingonawalker.CassisuggestedIwriteabookthatexplainswhysomepeoplemayneedawheel-chairortypeofaidtogetaround.KimSponaugleisafreelanceillustratorandagraduateofthePhiladelphiaArtInstitute.Sheisnotedforastylethatcapturesthejoyofchildhoodandinthisinstanceitsallhappeningatthezoo. 60MSFocusSpring2014WarandPeaceontheMSFrontByMitchellSturgeonLivingwithachronicdiseaseisoftenportrayedasapitchedbattlebetweenthepatientandtheillness.Withdiseaseslikemultiplesclerosisthisisonlypartiallytrue.ThereisatimetogotowarwithMSbutthereisalsoatimetomakepeacewithit.Illdiscussthevirtuesofeachapproach.GoingtoWarwithMSOnceIrecoveredfromtheinitialshockofmyprimaryprogressivemultiplesclerosisdiagnosisIpreparedforwarconfidentofvictoryhoweverIwasslightlynave.Twoactivebattlefieldsrequiredmyattention.FirstIimmersedmyselfinresearchaboutthediseaseanditscurrentandpotentialtreatments.UtilizingthisknowledgeandinconsultationwithmymedicalteamIenduredanarrayofbothconventionalandexperimentaltreatments.UnfortunatelyIhaveyettoexperiencelong-lastingbenefitsbutIkeeptrying.SecondIdideverythinginmypowertoremainemotionallyresilient.IndoingsoIhopedtonotonlypreservemyownwell-beingbutperhapsinspireothersinsomesmallway.InregardstoMSItookontheattitudeIsthatthebestyouvegotIwasntindenialIsimplyrefusedtoletMSdefeatmyspirit.DuetogoodgenesandagreatsupportsystemIvebeenlargelysuccessfulinthisbattle.MakingPeacewithMSAsingle-mindedbattle-readystrategymaybeidealforbreakingswimrecordsinhighschoolgettingintothecollegeofyourchoiceorbuildingabusiness.Itmayevenbethebestwaytobeatcancer.Howeverthisisdifferent.MSprobablyisntgoingtokillmebutImunlikelytokilliteither.SoonaftermydiagnosisIrealizedthatamorenuancedapproachwasrequired.IneededtoacceptcertainlimitationsandoccasionallymakepeacewithMS.OncewalkingbecamedifficultforexampleIfoughtwithvigor.Iwenttothegymandworkedout.DuringthedayIwalkedasfarasIcouldrestedforafewminutesandthenwalkedsomemore.ButwhenitbecameobviousthatIneededhelpwhenlifestartedpassingmebyImadepeacewithmyconditionandadoptedtheuseofacanecrutchesascooterandeventuallyawheelchair.ItsunfortunatethatIhaveneededthesemobilityaidsandtheimplemen-tationofeachsuccessivedevicehasmarkedamilestoneinmydiseaseprogression.HoweverthedaythatIadoptanewassistivedeviceisalwaysagooddayfilledwithnewfreedomsor MSFocusSpring2014611.SutliffMatthewH.PTJonathanM.NaftCPODarleneK.StoughRNJarChiLeeMSSusanaS.ArrigainMAandFrancoisA.TheHipFlexionAssistDeviceHFADHFADimprovedstrengthHFADincreaseddailyactivitylevel.HFADbothGaitTraining.TheHFADIntroducingaPracticalSolutionforHipFlexionWeaknessPleasevisitourwebsiteformoreinformation.ebsPleasevstourwormatonormoreinffratherfreedomsrediscovered.Thesearethebestkind.InmyhealthypastIidentifiedmyselfasagolferasnowmobileroraprofessionalbusinesspersonforexample.IheldonaslongasIcouldwagedwarbutwhenthetimecameIacceptedmylossandmovedonmadepeace.IamnolongeranyofthosepeoplebutinretrospectIneverreallywas.ThosewereendeavorsthatIoccupiedmyselfwith.Theydidnotdefineme.WarandpeaceontheMSfrontitsadelicatebalancingact.MitchellSturgeonisafatheroftwoandahusbandofonefromSouthPortlandMaine.HesbeenmarriedtoKimfor28wonderfulyears.MitchellearnedhisChemicalEngineeringandMBAdegreesfromtheUniversityofMaine.Hewasdiagnosedwithprimaryprogressivemultiplesclerosisin2001andcontinuedworkingintheengineeringfielduntil2009whenhewentondisabilityretirement.Mitchellnowoccupiesawheelchairbutstillconsidershimselfanextraordinarilyfortunateman.Hewritespostsforhisblogwww.enjoyingtheride.com.StayCurrentLikeacondensedversionofalltheinformationyougetintheMSFocusfourtimesayeartheMSFYiisafreemonthlyinternetnewsletterdeliveredtoyourinboxfromtheMSF.PackedwithinformationaboutnewresearchupcomingclinicaltrialshealthtipsandnewsfromtheMSFthenewsletterisanotherwaytostayeducatedandempowered.Signupforyourfreesubscriptionatwww.msfocus.org. 62MSFocusSpring2014Theever-changinglandscapeoffederalregulationsmedicaltechnologyandinsurancecoveragecanmakeonesheadspin.Thiscolumnspotlightsgovernmentresourcesavailabletoqualifyingpeoplewhohavemultiplesclerosisandotherchronicillnesses.FinancialHelpfortheDisabledChildSupplementalSecurityIncomeandPlanforAchievingSelfSupportSupplementalSecurityIncomeSSIisaprogramchildrencanapplyforiftheymeetSocialSecuritysdefinitionofdisabledandiftheirfamilysincomeandassetsfallwithintheeligibilitylimits.Householdincomeandtotalassetsareconsideredwhendecidingifachildunder18qualifiesforSSI.Thisappliestochildrenwholiveathomeorwhoareawayatschoolbutreturnhomeoccasionallyandaresubjecttoparentalcontrol.Whenachildturns18parentalincomeandassetsarenolongerconsideredwhendeterminingeligibilityforSSI.ThereforeachildwhowasnoteligibleforSSIbeforehisorher18thbirthdaymaybecomeeligibleforSSIasanadultatage18.TheSocialSecurityAdministrationmayalsoapproveaPlanforAchievingSelfSupportPASSinwhichastudentisabletosetasideincomeandresourcesthatarebeingusedtowardaspecificvocationalgoalsuchascollegetuitionandstillreceiveSSIpayments.HoweverearningsfromemploymentmayaffectSSIbenefits.AnSSIeligibilityandpaymentamountarebasedonincomeandresourcesthingsofvaluethatanindividualowns.PASSletsdisabledindividualssetasidemoneyandorthingsheorsheownstopayforitemsorservicesneededtoreachtheirworkgoalaswellasthecost.PASScanhelpapersonsetasidemoneyforinstallmentpaymentsoradownpay-mentforitemssuchasavehiclewheel-chairorcomputertoreachtheworkgoal.Onceaworkgoalanddeterminingitemshavebeenestablishedapplicantscangethelpsettingupaplanwithavocationalrehabilitationcounselororanyoneelsewillingtohelp.APASSexpertworksdirectlywiththeapplicantandlooksovertheplantoseeiftheworkgoalisreasonable.TheSSAreviewstheplantomakesurethatitemsandservicesrequestedonPASSareaffordableandneededtoachievetheworkgoal.Withanapprovedplanyoucansetasidemoneytopayexpensestoreachyourworkgoal.ForexamplethemoneyyousavecanbeusedforTransportationtoandfromworkTuitionbooksfeesandsuppliesneededforschoolortrainingChildcareAttendantcareEmploymentservicessuchasjobcoachingandresumewritingSuppliestostartabusinessEquipmentandtoolstodothejobUniformsspecialclothingandsafetyequipment.FormoreinformationonSSIandPASScontactyourlocalSocialSecurityAdministrationofficeorconsultwww.ssa.govdisability. MSFocusSpring201463SleepApneaMayContributetoFatigueinPeoplewithMSAnewUniversityofMichiganstudysuggeststhatalargeproportionofpeoplewithMSmayhaveanundiagnosedsleepdisorderthatisalsoknowntocausefatigue.Thatdisorderobstructivesleepapneaisatreatablecondition.InthelatestissueoftheJournalofClinicalSleepMedicineresearchersfromtheU-MHealthSystemsSleepDisordersCenterreporttheresultsofastudyinvolving195patientsoftheU-MMultipleSclerosisCenter.Inall56percentoftheMSpatientswerefoundtobeatanincreasedriskforobstructivesleepapneabasedonamethodofscreeningfortheconditionknownastheSTOP-Bangquestionnaire.Howevermosthadneverreceivedaformaldiagnosisofsleepapneaandlessthanhalfofthosewhohadbeentoldtheyhadsleepapneawereusingthestandardtreatmentforit.TheauthorsalsofoundthatpatientswhoweremorefatiguedweremorelikelytoalsobeatelevatedriskforsleepapneaevenaftertakingintoaccountotherfactorsthatmighthavecontributedtofeelingsoffatiguesuchasagegenderbodymassindexBMIsleepdurationdepressionandothernighttimesymptoms.ThestandardtreatmentforobstructivesleepapneacalledcontinuouspositiveairwaypressureCPAPinvolvesamachineandmaskdevicethatappliesastreamofairtotheupperairwaytokeepitopenduringsleep.Dr.ThrowerFatigueisoneofthemostcommonandbothersomesymptomsaffectingpeoplewithMS.BydefinitionMS-relatedfatigueleavespeopleunabletocarryoutusualdailyactivities.FatiguemaybeadirectresultoftheMSbutdisruptedsleepmedicationsandotherhealthissuesmayalsocontribute.Sleepmaybedisruptedbybladdersymptomsspasmsorevendepression.ThisstudyshowsthatobstructivesleepapneaOSAmaybeapoorlyrecognizedfactoraswell.InthepersonwithOSAtheairwaygetsblockedduringsleep.Bloodoxygenlevelsdropultimatelycausingthepersontowakeupatleastpartially.Thispatternrepeatsmanytimesthroughoutthenightpreventingnormalrestfulsleep.DaytimefatigueisthemostcommonsymptomofOSA.OSAisdiagnosedwithanovernightsleepstudyorpolysomnogram.CluesthatapersonmayhaveOSAincludefeelingtiredevenafterafullnightssleepandsnoring.TheMSNewscolumnincludesanalysisfromMSFSeniorMedicalAdvisorBenThrowerM.D.DrawingfromthetopMSnewsstoriesofthequarterDr.ThrowerwillassesswhatthenewsmeanstoyouthepersonwithMS.MSNEWSandWhatItMeanstoYou MSFocusSpring201464BlockingProteinCouldLeadtoMyelinRepairResearchersrecentlyreportedidentifyingasmallproteinthatmaybetargetedtopromoterepairofdamagedtissueassociatedwithmultiplesclerosis.ThemoleculeEndothelin-1ET-1isshowntoinhibitrepairofmyelin.MyelindamageisahallmarkcharacteristicofMS.ThestudyfromtheCenterforNeuroscienceResearchatChildrensNationalHealthSystemdemonstratesthatblockingET-1pharmacologicallyorusingageneticapproachcouldpromotemyelinrepair.ThebrainproducesnewcellstorepairthedamagefromMSyearsaftersymptomsappear.Howeverinmostcasesthecellsareunabletocompletetherepairasunknownfactorslimitthisprocess.RepairofdamagedMSplaquesiscarriedoutbyendogenousoliogdendrocytleprogenitorcellsOPCsinaprocesscalledremyelination.CurrentMStherapycanbeeffectiveinpatientswithrelapsingandremittingMSbuthavelittleimpactinpromotingremyelinationintissuetheresearchersstated.SeveralstudieshaveshownthatOPCsfailtodifferentiateinchronicMSlesions.TargetingET-1isaprocessthatinvolvesidentifyingsignalsincellsthatcouldpromotelesionrepair.Dr.ThrowerThecurrentmanagementparadigmforMScanbedividedintothreeareasrelapsemanagementsymptommanagementandpreventionofdiseaseprogression.Researchismovingtowardsafourthgoalneuralrepair.RepairingdamageinthebrainandorspinalcordistheHolyGrailformanyneurologicalconditionsincludingMS.Onceconsideredimpossibleresearchisgivinghopeofmakingneuralrepairareality.Asnotedinthisarticlethehumancentralnervoussystemiscapableofrepairingitselfbutseemstobeblockedfromdoingso.ThediscoveryoftheET-1proteinasafactorthatmayblockremyelinatonmayleadtotherapiesthatinhibitthisinhibitor.Thismaygohand-in-handwithanti-LINGOresearch.LINGOisanotherproteinthatisfelttoinhibitremyelinationandclinicaltrialsarebeingconducted.FDAApprovesThree-Times-a-WeekCopaxone40mgmLTevaPharmaceuticalsIndustriesLtd.announcedthattheFoodandDrugAdministrationFDAhasapprovedthesupplementalnewdrugapplicationforCopaxone40mgmL.Thenewdosingscheduleofthreetimesaweekwillallowalessfrequentdosingtreatmentforthoselivingwithrelapsingformsofmultiplesclerosis.InadditionthedailyCopaxone20mgmLwillalsocontinuetobeavailabletopatients.Dr.ThrowerAnotheroptioninthetoolboxMoreoptionsformanagingMSarealwayswelcome.CopaxonehasbeenasafeandeffectiveoptionformanypeoplewithMS.Dailyinjectionsoveryearscanbeahasslehowever.WhilethreepillsforrelapsingformsofMSareavailablesomepeoplemaywanttostaywithCopaxoneiftheycouldjusthavefewerinjections.ThenewlyapprovedformofCopaxonewillmean209fewerinjectionsperyearthanthepreviousversion.NewToolHelpsPredictEmploymentIssuesforPeoplewithMSResearchersatKesslerFoundationaresearchconsortiumthatmakesunemploymentresearchapriorityintheirongoingeffortshasrecentlypublished oneofthefirstscientificstudiesonthecorrelationbetweenmultiplesclerosisandemployment.ThishasledtothecreationofanewtoolforphysicianstoascertainfutureemploymentissuesintheirMSpatientssotheycandeterminehowtobestmitigatethoseissuesastheypresentthemselves.KesslerFoundationstudyauthorsLaurenStroberPh.D.NancyChiaravallotiPh.D.NancyMoorePh.D.andJohnDeLucaPh.D.utilizedthemeasurementtoolsusedindiagnosingandtreatingmultiplesclerosisinordertoformulateanewmeansofmeasuringemploymentstatusandimpactofthediseaseonemployment.TodothistheycomparedtheExpandedDisabilityStatusScaleEDSStheMultipleSclerosisFunctionalCompositeMSFCthePacedAuditorySerialAdditionTaskPASATandtheSymbolDigitModalitiesTestSDMTasanemploymentpredictor.TheyfoundtheSDMTthemosteffectiveindifferentiatingemployedfromunemployedindividualsaswellasthespecificsymptomaticfactorsthatplayintoemploymentstatusforthosewithMS.Dr.ThrowerMScanaffectqualityoflifeinmanywaysincludingtheabilitytowork.PastresearchhasshownthatfatigueandcognitivedysfunctionaretheMSsymptomsthatmostcommonlyaffecttheabilitytowork.Wecanmeasurecognitivedysfunctionthroughneuro-psychologicaltestingbutthisrequireshoursandisexpensive.TheSymbolDigitModalitiesTestSDMTappearstobepredictiveofdifficultiesintheworkplaceasseeninthisstudy.Throughthismorelimitedtestwemaybeabletoidentifyproblemsandmakeappropriateadjust-mentssooner.AntioxidantShowsPromiseinFightagainstMSAnantioxidantwhichwasdesignedbyscientistsmorethanadozenyearsagotofightdamagewithinhumancellssignificantlyhelpssymptomsinmicethathaveamultiplesclerosis-likediseaseanewstudyshows.TheantioxidantcalledMitoQhasshownsomepromiseinfightingneurodegenerativediseasesbutthisisthefirsttimeithasbeenshowntosignificantlyreverseaMS-likediseaseinananimalaccordingtoresearchersatOregonHealthScienceUniversity.Thereisabuilt-inadvantagewithMitoQ.UnlikemanynewdrugsMitoQhasbeentestedforsafetyinnumerousclinicaltrailswithhumans.Sinceitsdevelopmentinthelate1990sresearchershavetestedMitoQsabilitytodecreaseoxidativedamageinmitochondria.ItappearsthatMitoQentersneuronalmitochondriaquicklyscavengesfreeradicalsreducesoxidativeinsultsproducedbyelevatedinflammationandmaintainsorevenboostsneuronalenergyinaffectedcellsresearchersreported.Dr.ThrowerThethoughtofantioxidanttherapiestopreventdamageinthebrainandspinalcordforpeoplewithMSisintriguing.Recently-approvedTecfideraworksthroughantioxidantpathways.MitoQappearstoshowpromiseintheanimalmodelofMS.OfcoursethereisthecaveatthatistheanimalmodelnotactualhumanMS.StillMitoQhasbeenaroundforawhileandappearstohaveagoodsafetyprofile.Itwillbeexcitingtoseefurtherhumanstudies.65MSFocusSpring2014 66MSFocusSpring2014Q.Q.CantherapyhelpincreasesexdriveinwomenwithMSA.A.Lossoflibidoorsexdriveisthemostfrequentlyreportedsexualsymptomamongwomenwithmultiplesclerosis.TherehavebeencasereportsthathaveaddressedthistopicinMS.InonestudysextherapyincombinationwithMSsymptommanagementandcommunica-tionskillstrainingreportedanecdotalsuccessinwomenwithMS.Q.Q.HowdoIcopewithpostpartumfatigueifIhaveMSA.A.Carefulplanningforthepostpartumperiodcanminimizestressfatigueandyourriskofhavinganexacerbation.Exhaustionistypicalfornewmothersbutanewmotherwithmultiplesclerosismustnotignorethisfatigue.Itisimportanttofocusonlyoncaringforyourselfrestingandcaringforyournewbaby.Otherhouseholdtaskssuchasshoppingsocialeventsandevensomeoftheinfantcareshouldbedelegatedtoothers.Duringtheinitialsixmonthsafterdeliveryupto40percentofwomenmayexperiencearelapse.Duetothisheightenedriskyoumaychoosetostartorrestartoneoftheimmunomodulatingdrugsrightafteryourbabyisborn.IfyouareemployedoutsidethehomeyoumayrequirealongermaternityleavethantheaveragesixtoeightweekperiodthatiscustomaryintheU.S.becauserelapsesoccurmostfrequentlybetweenthefourthandeighthweekofthepostpartumperiod.Q.Q.Whatisapseudo-exacerbationinMSA.A.Aviruscancauseoldmultiplesclerosissymptomstoresurfaceandmakeyoufeellikeyouareinanexacerbation.Thisiscommonlycalledapseudo-exacerbation.InthehospitalweoftenseeolderpeoplewithoutMSwholookliketheyarehavingastrokewhenalltheyhaveisaurinarytractinfection.ThesameistruewithMSpatientswhomaylookliketheyarehavinganexacerbationrelapsebutarereallynot.SometimesyoumaynoticethatolderMSsymptomsseemtoresurfacewhenyouaretiredoroverheated.ThisalsodoesnotmeanyouarehavinganMSrelapse.YoumaybeexperiencingUhtoffsphenomenonwhereheatcausesolderMSsymptomstoresurface.AtrueMSrelapseusuallylastsforweekstomonthsbeforeimproving.ThisQuestionsandAnswerscolumnfeaturesquestionsthathavebeenansweredbytheMSFforSharecareacompanydedicatedtoprovidingthebesthealthandwellnessinformationonline.TheMSFhaspartneredwithSharecaretohelpspreadvitalinformationaboutthediseasetotheglobalMScommunity.VisittheMSFspageonSharecare.comathttpwww.sharecare.comgroupmultiple-sclerosis-foundation. Spring2014MSFocus67Q.Q.WhatissecondarypaininmultiplesclerosisA.A.PeoplewithMScansufferfrompainthatisnotadirectresultofdemyelinationofnervesorthediseaseprocess.ForexamplepaininMScanbesecondarytospasticityanothercommonsymptomandsuccessfulmanagementofthespasticitymaydecreasetheoccurrenceandintensityofpain.NotsurprisinglypainsecondarytospasticityisbesttreatedwithantispasticitymedicationsincludingbaclofenLioresalortizanidineZanaflex.Insomeinstancespainresultingfromspasticitycanbereducedusingover-the-counternonsteroidalanti-inflammatorydrugssuchasibuprofenMotrinorAdvilornaproxenAleve.Q.Q.WhatshouldItellmydoctorbeforeImprescribedAubagioformyMSA.A.Aubagioteriflunomideisaonce-dailyoraltherapyforrelapsing-remittingmultiplesclerosis.IfyouhaveorhavehadliverorkidneyproblemsfeverorinfectionorareunabletofightinfectionsnumbnessortinglinginyourhandsorfeetthatisdifferentfrommultiplesclerosissymptomsdiabetesseriousskinproblemswhentakingothermedicationsbreathingproblemshighbloodpressureorifyouarepregnantorbreastfeedingorafemaleofchildbearingageandnotpreventingpregnancytellyourdoctorbeforestartingAubagio.Q.Q.WhatfactorshelppredicttheprogressionofMSA.A.GendercognitivestateandtheamountoflesionsonthebrainappeartobeimportantfactorsforpredictingmultiplesclerosisprogressionaccordingtoastudyconductedattheUniversityofFlorenceinItaly.AdditionallycognitivetestingofpeoplewithbenignMSwhoappeartobehealthymayprovideinformationthatcanhelptailordiseasetreatment.ThestudywhichfocusedonpeoplewithbenignorinactiveMSwaspublishedinanonlineissueofNeurologythemedicaljournaloftheAmericanAcademyofNeurology.PeoplewithbenignMSarethosewhoremainfullyfunctionalafter15ormoreyearsfromdiseaseonset.Nearly30percentoftheparticipantsexperiencedsignificantworseningofthediseaseduringthefirstfiveyears.Peoplewhofailedmorethantwooutof10cognitivetestswere20percentmorelikelytoprogressovertime.MenwithbenignMSwerenearlythreetimesmorelikelytolaterexperiencesignsofMScomparedtowomen.Peoplewithmorebrainlesionsdetectedonscanswerealsomorelikelytodevelopsignsofthedisease.Questionscanbealsobeemailedtosupportmsfocus.orgormailedtoMSFocus6520NorthAndrewsAvenueFortLauderdaleFL33309.VisitOurWebsitetwww.HeatReliefDepot.comReceivea10DiscountUseCouponCodeMSFWarmingVestsHandFootWarmersWarmingCushionsHerbalWrapsHeatPacksMoreCoolingVestsNeckWristCoolersFansSunscreensHatsCapsVisorsMistingProductsMoreYourPlaceForPersonalCoolingWarminProductsHEATRELIEFDEPOTOrCallUsTollFree877-879-1450 NONPROFITORG.U.S.POSTAGEPAIDFT.LAUDERDALEFLPERMITNO.2698AreyoumovingPleasenotifyusofyourchangeofaddress.Call888-MSFOCUS673-6287orE-Mailsupportmsfocus.orgChangeServiceRequested6520NorthAndrewsAvenueFortLauderdaleFlorida33309-2132RAND-SCOTIncorporatedMakeanEasytransferwiththeEasyPivotTheEasyPivotPatientLiftisthepatientliftofchoice-EasyPivotEasyPivot401LindenCenterDriveFortCollinsCO80524800-467-7967970-484-7967inforandscot.com2012Rand-ScotInc.ManufacturersofEasyPivotLiftsBye-ByeDecubitiCushionsSaratogaFitnessProductsSpiritCycleFeelbetterforlifewithSpiritCyclewww.RandScot.comSaratogaSpirit690-