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PublicationsManagerTerrySchenkerManagingEditorGayFalkowskiEditorialCommitteeKaseyMinnisBrieaCuringtonNatalieBlakeJayHassContributingWritersHildyBergerStephanieButlerNPMSCNJoanneFortunatoEllenWhippleGuthriePharmDYvonneC.LearmonthPhDRobertMotlPhDKeithA.OtisGlennSparrowTALKBACKTALKBACKWeWelcomeTopicSuggestionsforFutureIssues.Yourcommentsabouteachissueareimportanttous.Emailcommentstoeditormsfocus.orgorwritetoEditorMSFocus6520N.AndrewsAvenueFortLauderdaleFL33309TakeMSFocusontheroadwithMSFocusRadio.orgListenonyourPCormobiledeviceAvailable247 MSFocusispublishedquarterlyinenlargedtypeforthebenefitofourreaders.Audioversionsoffeaturedarticlesareavailableforlisteningordownloadonwww.msfocus.orgclickOnDemandAudio.Backissuesareavailableonlineatwww.msfocus.org.MSFocusisafreepublicationforindividualswithMStheirfamiliesandothersinterestedinMS.StatementofPurposeThepurposeoftheMultipleSclerosisFoundationspublicationsistoempowerthoseaffectedbyMSwiththeinformationnecessarytomakethemostcompleteandeducateddecisionsconcerningtheirhealthcare.Wedonotadvocateorendorseanyspecifictreatmentshealingmodalitiesorpractitioners.Thematerialpresentedinthispublicationisforinformationalpurposesonly.Forspecificadviceconsultahealthcareprofessional.MSFdoesbelievethateachpersonhastherighttochoosethetreatmentstheyfeelarebestandthereforeactsasasourceofinformationprovidingreferralstolocalresourcesandpartnershipinproblemsolving.MSTech10151MSFOnTheRoad54RegionalEvents55FromtheLibrary58UncleSamsHelpingHand60MenMS62MSNews64QuestionsAnswers66FEATURESLetsGetPhysical10ExerciseisGoodMedicine14MSFHealthandWellnessProgramCombinesFunandFitness16MeetYour2014MSFAmbassadors21ChairZumbaPutstheZestinExercise26HowtoChartYourMedicalRecordsforSmoothSailing28HittingYourStrideFootDropTreatmentImprovesGait30HelpUsHelpYouMSFocusSurvey42AnnualCaregiversNightOutandBrighterTomorrowGrantApplications43CONTINUINGTOPICSAsWeSeeIt8MSFMailbox9PSWhatsNew35FacebookFeedback36VoicesTheWind38SupportGroupSpotlight41UpdatesbythePharmacist46 8MSFocusSummer2014Recentlysomenewscameoverthewireservicesthathasgivenusreasontobeconcerned.WehavebeenremindedthatitwontbelongbeforethefederalfundingthatprovidesbenefitsforSocialSecurityDisabilityIncomeSSDIrunsout.Thelargenumberofagingbabyboomershasspeduptheprocess.AsmanyofyouknowfirsthandSSDIservesasavitallifelineforindividualsandfamilieswhoareunabletoworkduetopermanentdisabilityresultingfromaninjuryorchronicdiseasesuchasMS.Withmonthlybenefitscurrentlyaveraging1100familiesarelivingameagerexistenceevenwhenfoodstampsareadded.Whenoneconsidersallthehoopsapersonhastojumpthroughtoqualifyaswellasthelimitedincomebenefititisplaintoseethereisnoexcesstotrim.Fundingmustnotbeallowedtolapseforanyperiodoftimetheimpactonpeoplesliveswouldbecatastrophic.Innowaydoesthiscomeasashocktopoliticiansbureaucratsandadvocates.EveryonehasbeenawareforsometimeofthewellrunningdryforSSDIandultimatelyforSocialSecurityretirementbenefitsaswell.WhatmakesthisespeciallytroublingisthatnextyearandtheyearafterCongressmayusethisurgentneedforfundingasaballtobebattedaroundinitsusual-as-of-latepoliticalinfighting.TheironyofallthisisthatSSDIwasoriginallypassedintolawinpartduetotheeffortsofkeycongressmenwhowereupforre-electionalongwithadeterminedmajorityleaderLyndonJohnson.Todaywithsomerepresentativestoutingtheirfiscalconservatismatre-electiontimeanadequatefundingplanmaynotnecessarilybeassuredorimplementedonatimelybasis.ThebestnewstohearwouldbethatallthisisjustspeculationandthatCongresswillindeedworktogethertoensurethatSSDIdoesnotcomeinharmsway.Itispossiblethisisactuallyhowitwillallplayoutattheend.Unfortunatelyinrecentyearswehaveseenhowourlegislativebranchofgovernmenthasmanagedtocometoastandstill.ThusfornowweencourageeveryonetopolltheircongressionalrepresentativestolearnhowtheystandonthisissueandifnecessarymakeitperfectlyclearSSDIisnotabargainingchipJulesKuperbergAlanR.SegaloffCo-ExecutiveDirectorCo-ExecutiveDirectorWilltheAmericanConscienceWilltheAmericanConscienceTakeAnotherHitTakeAnotherHit SpringIssueHitsHomeIhavebeenreadingyourmagazineforprobably20yearsnowandthespringissueisbyfarthebestIhaveeverreadEventhoughthemainarticlewasaddressingpediatricMSthiscanreallyapplytoanyonedealingwithMStheirfamilyandcarepartner.Kudosforajobwelldone.JodyBukacekOklahomaCityOkla.WriterRestoresReadersHopeIreadthestorywrittenbyMollyWilliamsATeensShatteredDreamsRestoredSpring2014.Mollyyouinspiredmeandrestoredmydreamsandthoughts.OhthedreamsIhadbeforeIknewIhadMSIfoundoutin2004Iwasnotasyoungasyoubutitshatteredme.Everyonewhoknowstreatsyoulikeyouarealreadygone.YourstoryisjustwhatIvebattled.ButyourstorybroughtmetothesunshineIoncehad.ThankyouMollyWilliamsforyourstory.RhondaPickerellMt.WashingtonKy.AnAccessibleBathroomforKeepingCleanandSafeIjustwanttothankyoufromthebottomofmyheartforagreeingtohelpperhapsoneofthesweetestandmostdeservingwomenIhaveeverhadthepleasuretoknowNolaGriner.Nolahasbeenwaitingwelloverayearnowforrepairstoabotchedbathroomremodelsothatshecanfinallyutilizeherfacilitiestobathe.NowandonlynowbecauseoftheMSFthisextremelydisabledwomanwhohassufferedsoseverelywithMSshallfinallybecapableofhavingwhatthemajorityofustakeforgranted.Nolaisaspecialwomanawomanlivingalonewithtwoteenagedaughtersandverylittlefinancialresources.Shehasnothingbuttheverylimiteduseofonehandandthisshallmeaneverythingtohersafetysecurityandtheabilitytofeelwhole.IwishyouandyourorganizationmuchcontinuedsuccessandthoughIwishyourworkwerentnecessaryImgratefulyourehereforthoseofuswhodesperatelyrequireit.SharonNewmanBabylonN.Y.HappilyintheMinorityTheQuestionandAnswerarticleinyourspring2014editionaddressedtheissueofsexdriveinwomenwithMS.Itwasnotedthatdysfunctionwasreportedratherfrequently.IamsohappythatIamintheminorityasIhavefoundthatnotonlyismylibidonotaffectedbyMSmysexdriveisactuallybetterthanithaseverbeen.IhavechronicnervepainandtakeGabapentinforit.Itdoesnttakethepainawaytotallyanditsmuchworseatnight.StrangelyIvefoundthatonthedaysnightsthatIdohavesexIhavenonervepain.MyneurologistandIcantfigureitoutbutImnotcomplaining.MaeveCooperDesMoinesIowaMSFocusSummer20149IfyouhaveanycommentsorquestionsfortheMSFtheycanbeemailedtoeditormsfocus.orgorwritetoEditorMSFocus6520N.AndrewsAve.Ft.LauderdaleFL33309 MSFocusSummer201410Overthepasttwodecadesresearchersandclinicianshavefocusedexclusivelyonthebenefitsandpromotionofexercisetraininginpersonswithmultiplesclerosis.Exercisetrainingisatypeofstructuredphysicalactivitythatfocusesonimprovingonesphysicalfitnessandistypicallyperformedundersupervisedconditionsinagymnasium.Thistypeofphysicalactivitycouldincludeaerobicexercisee.g.ridingacycleorresistanceexercisee.g.liftingweights.Itisprescribedbasedonintensitydurationandfrequencywiththeobjectiveofimprovingenduranceormusclestrength.ThereissubstantialscientificevidencethatexercisetrainingissafeandeffectiveinpersonswithMSbutexercisetrainingisneitheranavailablenorattractiveoptionforallpersonswithMS.Wehaverecentlybegunfocusingonbeingphysicallyactiveaspartofdailylifei.e.lifestylephysicalactivityinpersonswithMS.ThisrepresentsanalternativeapproachformanagingmanyoftheMSconsequencesandsignifiesafreshapproachforpromotionofhealthandwellnessinMS.ThisarticledefineslifestylephysicalactivityanddescribesitspossiblebenefitsandpromotioninpersonswithMS.ThehopeisthatthiswillrepresentanalternativeorcomplementaryapproachcomparedwithexercisetrainingforpromotionofhealthandwellnessinMS.LifestylePhysicalActivityWhatIsItLifestylephysicalactivityisabehaviorthatisbroadlydefinedasanybodilymovementproducedbythecontractionofmusclesthatsubstantiallyincreasesenergyexpenditure.Thistypeofbehaviorcanbeaccumulatedduringonesdailyroutinebyparticipatingin30ormoreminutesofself-selectedphysicalactivities.Thiscanincludeleisureactivitiese.g.anicewalkintheparkoccupationalworkTheImportanceofBeingPhysicallyActiveasPartofDailyLifewithMSByRobertMotlPhD MSFocusSummer201411e.g.walkingtoaco-workersdeskratherthansendinganemailtransportatione.g.ridingabicycletothestoregardeningorevenhouseholdchorese.g.vacuuming.Lifestylephysicalactivitycanbeplannedorspontaneousbutessentiallyitisaccumulatedaspartofdailylife.Thismeansthatthephysicalactivitiesareself-selectedratherthanprescribedbyanotherpersonpurposefullyplannedbyanindividualorunplannedandspontaneousandimportantlycanbeaccumulatedinmultipleshortboutsoverthedaye.g.multiplefiveminuteperiodsofwalkingratherthanonelongcontinuoussession.OveralllifestylephysicalactivityofferspersonalcontrolflexibilityandvariationandisaccumulatedinamannerthatshouldnotbetaxingonapersonwithMSe.g.shortboutsshouldminimizefatigue.ThisisanewapproachforpromotinghealthandwellnessinMS.DoesLifestylePhysicalActivityMatterYoumaybeaskingarelifestylephysicalactivitiesbeneficialforpersonswithMSThereisactualscientificevidencethatlifestylephysicalactivityisassociatedwithmeaningfuloutcomesforpersonswithMSandtheseoutcomesrangefromcellstoqualityoflife.IndeedresearchhasindicatedthatpersonswithMSwhoengageinlifestylephysicalactivityhavebetterbrainhealthbasedonmagneticresonanceimagingbettercognitionbasedonspeedofinformationprocessingandincreasedmobilityandcardiovascularhealth.FurthermorepersonswithMSwhoengageinlifestylephysicalactivityhavelessfatiguedepressionanxietyandpainandbettersleepqualityandqualityoflife.CollectivelythissuggeststhatpersonswithMScanbenefitfromlifestylephysicalactivity.HowDoWePromoteLifestylePhysicalActivityTheaccumulationoflifestylephysicalactivitycanbepromotedthroughbehavioralinterventions.Suchinterventionstargetthereductionofsedentarybehaviore.g.sittingandwatchingtelevisionandencourageengagementinphysicalactivitiesaspartofdailylifei.e.sitlessandmovemore.TheseinterventionsworkbyteachingpeoplewithMStheskillsstrategiesandtechniquesforsuccessfulhealthbehaviorchange.Forexamplebehavioralinterventionsmightteachskillsofself-monitoringgoalsettingandpositivereinforcement.Thiscouldbeaccomplishedbywearingasimplepedometerandconcurrentlyrecordingstepstakenperdayinajournalacrossa MSFocusSummer201412oneortwoweekperiodoftimei.e.self-monitoring.Sucharecordingservesasabaselineforsettinggoalsbasedonchangingstepstakenperday.Thegoalscanbeshortterme.g.nextweekorlongterme.g.nextsixmonthsandbuildupononeanother.Thepedometercanagainbeatrackingtoolformonitoringgoalattainmentweeklymonthlyandannuallyandgoalattainmentcouldbereinforcedwithrewardse.g.dinnerwithfriends.ThisisoneofmanyapproachesforchanginghealthbehaviorsandsuchasimpleapproachhasbeentestedaspartofmanyresearchstudiesinMS.InourresearchonthistopicourfirstbehavioralinterventionforincreasinglifestylephysicalactivityinMSwasdeliveredthroughanInternetwebsite.TheInternetwebsiteanditscontentbasedonourexperienceswithMSabriefsurveyandfeedbackfromafocusgrouptargetedself-monitoringgoalsettingbeliefsaboutthebenefitsofphysicalactivityself-confidenceandovercomingbarriers.WeexaminediftheInternetwebsiteasabehavioralinterventionwouldincreaselifestylephysicalactivityacrossathree-monthperiodin54personswithrelapsing-remittingMS.Participantswererandomizedintoeitherbehavioralinterventionorwaitlistcontrolconditionsandwemeasuredself-reportedphysicalactivitybeforeandafterthethree-monthpilotrandomizedcontroltrial.Theinterventiongroupreportedalargeincreaseinphysicalactivityovertimewhereasthecontrolgrouphadminimalchange.Theinterventionworkedmostlybypromotingself-monitoringandgoalsettingandtherewerenoadverseevents.WehavereplicatedtheincreaseinlifestylephysicalactivityinthreesubsequentstudiesinvolvingpersonswithMSandonestudyreportedthattheincreaseinphysicalactivitypersistedforthreeadditionalmonthsevenaftertheInternetwebsitewasremoved.ThesestudiessuggestpeoplewithMScanlearntoself-managetheirlifestylephysicalactivity.Werecentlytestedthesamebehavioralinterventionforincreasinglifestylephysicalactivityandimprovingsecondaryoutcomesofwalkingmobilitycognitionsymptomsandqualityoflifeoverasix-monthperiodin82personswithMS.Importantlytheinterventionconditionyielded40minutesperweekmorelifestylephysicalactivitythanthecontrolconditionandtheaverageminutesperdayoflifestylephysicalactivityfortheinterventiongrouptranslatedinto140minutesperweek.Thisnearlymeetsthecurrentpublichealthrecommendationofaccumulating150minutesperweekoflifestylephysicalactivity.Thebehavioralinterventionprovedbeneficialbyreducingfatiguedepressionanxietyandpainandimprovingsleepandqualityoflife.Therewerefurtherimprovementsinthedistancewalkedduringasix-minutewalktestandperformanceonaneuropsycho-logicaltestofcognitiveprocessingspeed.AnotherlogicalfocusofbehavioralinterventionsinvolvesreducingdailysittingtimeaformofsedentarybehaviorthathasbeenidentifiedasahighlyprevalentriskfactorforMS-relatedmorbidity.Tothatendwerecently MSFocusSummer201413examinedifthebehavioralinterventionwouldreducedailysittingtimein70personswithMS.Thebehavioralinter-ventionreduceddailysittingtimebyover1.5hourscomparedwiththecontrolgroup.WeprovidethefirstdataontheefficacyofabehavioralinterventionforreducingsittingtimeinMSpatients.ThishighlightstheimportanceofdesigningandtestingtheeffectofbehavioralinterventionsthatreducesittingonsecondaryoutcomessuchasfunctionsymptomsqualityoflifeandhealthstatusinpersonswithMS.TakeHomeMessageWhilemanagingtheconsequencesoftheillnesslifestylephysicalactivityrepresentsanewapproachforimprovingthehealthandwellnessofpersonswithMS.ThereductionofsedentarybehaviormightfurtherbeanewmethodformanagingMSanditsconsequences.Itistoyouradvantagetochooseanewapproachforhealthandwellnessstartingbymovingmoreandsittingless.Therearemanysimpleoptions.IfyouareambulatoryyoumightconsiderstandingwhilewatchingTVorwalkingaroundthehousewhiletalkingonthephone.Youmightconsidertaking5-minutewalkbreakseveryhourwhileworkingorduringthedayonweekends.Youcouldwalkaroundtheoutsideaislesofthegrocerystorebeforeandaftershopping.Youcoulddocumenttheeffectsoftheselifestylechangesusingapedometeralongwithself-monitoringandgoalsetting.Forthosewithlimitedmobilitythereareotheroptions.Theonlylimitationforincreasinglifestylephysicalactivityisyourimagination.DONATINGYOURUNNEEDEDCARVANORTRUCKCANHELPFIGHTMULTIPLESCLEROSISMULTIPLESCLEROSISFOUNDATION800-225-6495800-225-6495TAXDEDUCTIONINYOURGARAGECONVENIENTFREEPICKUPWEDOALLPAPERWORKRobertW.MotlisanassociateprofessorofKinesiologyandCommunityHealthaffiliateoftheDivisionofNeuroscienceanddirectoroftheExerciseNeuroscienceLaboratoryattheUniversityofIllinoisatUrbana-Champaign.AlsoProf.MotlischairoftheBiomedicalandHealthSciencesInstitutionalReviewBoardontheUniversityofIllinoiscampus.Prof.Motlhasresearchinterestsintheareasofexercisepsychologymeasurementandneuroscienceforunderstandingphysicalactivityandexerciseinpersonswithmultiplesclerosis.Prof.MotlreceivedabachelorsdegreefromSanDiegoStateUniversityamastersdegreefromtheUniversityofWyomingandaPhDfromtheUniversityofGeorgia.Prof.Motlhaspublishednearly300papersandiscurrentlyanassociateeditorforNeurorehabilitationandNeuralRepair.FurthermoreProf.MotlisastudysectionmemberandchairfortheNationalMultipleSclerosisSociety. IfyourhealthcareprovidersuggestedanapproachformanagingyourMSthatcouldimproveaerobiccapacitybalancedepressionfatiguemuscularstrengthqualityoflifeandwalkingmobilitywouldyouchooseitCanexerciseprovidesuchbenefitsandbegoodmedicineinMSTheanswerseemstobeYesTheManyBenefitsofExercisePeoplewithMSexperiencemanybenefitsfromengaginginanexerciseprogram.ForexampleexerciseprogramscanimproveendurancebalancemusclestrengthandwalkinginpeoplewithMS.Exerciseprogramscanalleviatesymptomsofdepressionandfatigue.EngaginginexercisecanimproveoverallevaluationoflifesatisfactionorqualityoflifeinpeoplewithMS.Theremightevenbebenefitsforcognitivefunctionandbrainhealth.WeknowofnootherapproachormedicinethatcanofferallthesebenefitsinMSAerobicFitnessorEnduranceResearchersuseassessmentsofaerobicfitnessi.e.abilityforsustainingphysicaleffortorperformanceovertimeforexaminingonesendurance.Aerobicfitnessisimportantformobilityeverydayactivitiesenergyhappinessandhealth-relatedqualityoflifeinMS.Exercisetrainingprogramsoftwotothreetimesperweekfor30to60minutesatamoderateintensity60percentofmaximalphysicaleffortareeffectiveforimprovingaerobicfitnessinpeoplewithMS.BalanceandFallsPreventionBalanceassessmentsi.e.maintenanceofstandingoruprightpostureprovideknowledgeofapersonscapacityformaintainingcontrolofonesbodyandavoidingafall.PhysicalbalanceisrelevanttomobilityeverydayactivitiesandsafetyamongstthosewithMS.Aspartofcombinedexercisetrainingprogramsperformedtwotothreetimesperweekbalanceexercisesmaybeeffectiveatimprovingoneswalkingconfidenceandreducingfallfrequency.MuscularStrengthStrengthassessmentsi.e.themaximalamountofloadonecanliftinasinglerepetitionofagivenexerciseprovideinformationonapersonsmuscularstrength.MuscularstrengthisimportantformobilitybalanceeverydayactivitiesandfatigueinMS.Progressiveexercise14MSFocusSummer2014ByYvonneC.LearmonthPhD 15MSFocusSummer2014trainingprogramsoftwotothreesessionsperweekstartingatanintensityofaround10to15repetitionstoreachthemaximalloadonecanliftmayresultinimportantgainsinmusclestrengthleadingtofunctionalimprovement.MobilityorWalkingResearchersuseassessmentsofmobilityi.e.thedistanceonecanwalkinagiventimeorthetimetowalkastandardizeddistanceforexaminingwalkingperformanceinpeoplewithMS.Suchmeasuresprovideinformationonwalkingendurancespeedandagility.Mobilityisimportanttoalmostallareasofoneslifeandisimportantformaintainingindependence.Exercisetrainingprogramsthatincludeaerobicexercisestrengthtrainingandcombinedexercisemayresultinimprovedmobilityorwalkingperformance.DepressionAssessmentsofmoodi.e.completionofquestionnairesontopicsrelatedtodepressionandmoodareusedbyresearcherstoestablishlevelsofdepressionandanxietyinpeoplewithMS.ThesemoodsmaybeimportantinmanyareasoflifeandcanbelinkedwithfatigueandqualityoflifeamongpersonswithMS.ResearchisbeginningtoindicatethatexercisetrainingmaybeagoodapproachforpreventingoralleviatingsymptomsofdepressionamongstthosewithMS.FatigueResearchersuseself-reportassessmentsoffatiguei.e.completionofquestionnairesontopicsrelatedtofatigueseverityanditseffectononeslifeforexaminingfatigueinMS.FatigueiscommoninMSandcanaffectalmostallareasofoneslife.EvidenceindicatesthatparticipatinginanMSexerciseprogramcanreducefatigueovertimeandmaybeoneofthemostimportantfatiguemanagementstrategiesinMS.Theevidencesuggeststhatexercisemightevenreducefatigueenoughovertimethatitnolongerinterfereswithdailytaskssuchasemployment.ExerciseSafetyThosewhohavebeendiagnosedwithMSmayhavebeenadvisedtorestandtakelifeeasyratherthanengageinexercise.ThiswasbasedonconcernsthatexercisingmayworsensymptomsandincreaserelapseratesinMS.ThereisactuallyverylittleevidenceofproblemsorsafetyconcernsregardingexerciseparticipationinMS.TheremightevenbefewerMSrelapsesinthosewhoexercisecomparedwiththosewhodonotexercise.BegintoExerciseAswithanynewtreatmentapproachyourhealthcareprovideranddiscussstartingexerciseaspartofyouroverallMSmanagementstrategy.YoumightevenbringtherecentphysicalactivityguidelinesforadultswithMS.TheseguidelinesareforadultswithmildtomoderatedisabilityresultingfromMSandprovideevidence-basedrecommen-dationsforbothaerobicandstrengthexercises.Theguidelinesrecommend30ormoreminutesofaerobicexercisee.g.armcyclingwalkinglegcyclingellipticaltrainingtwiceaweekandstrengthtrainingexercisesformajormusclegroupse.g.weightmachinesfreeweightstwiceaweek.Theexercisesshouldprogressinintensityorstrenuousnessovertimeandthereshouldbeonedayofrestbetweenaerobicorresistanceexercisetraining.ExerciseisimportantamongthosewhohavemoreadvanceddisabilityalthoughthereislessresearchinthissegmentofpersonswithMS.Recentresearchis YvonneC.LearmonthPhDisapost-doctoralresearchassociateinBiobehavioralKinesiologyattheUniversityofIllinoisUrbanaChampaignIllinois.SheisalicensedphysiotherapistHealthCareProfessionsCouncilandhaspreviouslyheldappointmentsintheScottishNHSandincompetitivesports.ShehasbeeninvolvedinMSresearchforoverfiveyearsobtainingherdoctorateinrehabilitationfromtheUniversityofGlasgow.ShehaspublishedandpresentedinternationallyintheareasofphysicalactivityandexerciseforindividualswithMS.Dr.LearmonthispassionateaboutunderstandingrehabilitationstrategiestoimprovethehealthandqualityoflifeofindividualswithMS.TothatendhercurrentresearchinterestsincludephysicalactivityandexercisestrategiesforthosewithdisabilitiesaccuratemeasurementinrehabilitationpracticeestablishingtheimpactofexerciseonMSdiseaseprogressionencouragingphysicalactivityandexerciseprescriptionandeducationinhealthcare.16MSFocusSummer2014investigatingtheuseofbody-weight-supportedexerciseandwheelchair-basedactivitye.g.self-propulsionandstrengthtrainingforimprovingoutcomesamongthosewithmoreadvancedMS.ThereareexerciseopportunitiesavailableforeveryonewithMS.Werecommendthatyoutakepartinexercisesthatyouenjoy.BeginningtoexerciseisthefirststepanditisimportanttointegrateexerciseandphysicalactivityintoyourlongtermMSmanagementstrategyasyouaremorelikelytocontinueexercisingifyouenjoyit.Exerciseisgoodmedicineandsome-thingthatisself-empoweringasanapproachforMSmanagement.MSFHealthandWellnessProgramCombinesFunandFitnessTheMSFHealthandWellnessProgramHWPprovidesresourcestopeoplewithMSfamilymembersmedicalprofessionalsandhealthandwellnesssupportersnationally.TheseresourcesincludeeducationalmaterialsinformationreferralsandtheopportunityforthosewithMStoparticipateinawiderangeofhealthandwellnessprograms.TheHWPconsistsofgroupandindividualparticipationprograms.Bothprogramsofferactivitiessuchasadaptiveyogaaquaticsfitnessexerciseandtherapeutichorsebackridingaswellasrecreationaltherapiessuchasartmusichorticulturaloradaptivesports.Currentlytherehavebeengreaterdemandsforprogramssuchasyogaandgymmemberships.TheseprogramswhichhelpmanagespecificsymptomsassociatedwiththediseaseareofferedtothosewithMSinasafeandsupportiveenvironmentbyqualifiedserviceproviders.Theprogramsalsohelpmaintainorimprovephysicalabilitiesandemotionalwell-beingaswellasincreasesocialskillsconfidenceandself-esteem.Thereareatotalofapproximately51groupandindividualprogramsongoingat35locationsin20states.FormoreinformationcontactAlmaHenryMSFHealthandWellnessProgramCoordinatorat800225-6495. 17MSFocusSummer2014 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 AnnPietrangeloWilliamsburgVa.ApublishedauthorandfreelancewriterfromVirginiaAnnPietrangeloiscommittedtonotonlyraisingawarenessbutalsotoeducatingotherstomakeinformeddecisionsastheybattleMS.Diagnosedwithrelapsingremittingmultiplesclerosisin2004andtriple-negativebreastcancerjustafewyearslatersheknowsalltoowelltheimportanceofhavingapositivesupportsystemandhopestoofferthesametoothers.Herpersonalexperienceshavetaughtherafewthingsabouthowtonavigatelifewithchronicillnesswhatittakestotrulysurviveandjusthowpreciouslifeis.AsanMSFAmbassadorAnnstrivestohelppeoplewithMSfindthesupportservicesandinformationtheyneedtomakegooddecisionsandtolivelifetothefullest.AlsoAnnwantstouseheronlinepresencetoencouragetheMScommunityandtohelpfamilyfriendsandothersgainsomeinsightintotherealitiesofMS.ShecreditsherhusbandJimforhissupportasacaregiverandassistanceinfindingalternatewaystohandledailyresponsibilities.Theiradultchildrenarescatteredthroughoutthecountrysotheyvelearnedtoloveroadtrips.Theirphilosophyissimplelivewhileyourehereandgivebackwhenyoucan.ChadBolemaJenisonMich.TherearegooddaysandtherearebetterdaysisthemottoChadBolemaliveshislifeby.DiagnosedwithMSin2000theinitialnewstookanemotionaltollastheideaofnotbeingabletofinanciallyorphysicallysupporthiswifeandtwodaughtershithard.Witharenewedsenseofdeterminationandresiliencyhewasabletochangehismindsetminimizehisfearsgrabholdoffaithandfigureoutawaytokeepgoing.HavinggonethroughavarietyofinjectionschemotherapiesandsteroidtreatmentsChadbelieveshisstorycaninspireandprovidecomforttosomeoneelse.AsanMSFAmbassadorChadhopestospreadhispositiveoutlooktothosewithMSbyspeakingtosupportgroupsandthelocalcommunity.IfeelblessedhavingtheopportunitytoeducateothersaboutMShoweveritsalsoawesometobeapartofdirectingfamiliesinfindingmeaningfulsupport.DinaKutcherHuntingtonStationN.Y.AsDinaKutcherwasfinishingherlastclinicalrotationinphysicianassistantschoolshenoticedthatthevisioninherlefteyewasblurry.HavingMSFocusSummer201421 MSFocusSummer201422seenwhatMSdidtoherdearlydepartedmothershewasfearfulofwhattheoutcomewouldbe.MyreactionwasIam29yearsoldandIamjustgettingstartedinmycareer.HowwasIgoingtobeabletofinishschoolItdidntseemfair.Ithasnowbeen12yearssinceshewasdiagnosedandsheisstillawalkingtalkinghappymovingandsingingperson.UnderstandingMSfromtheperspectiveofacaregiverandpatientDinaismostpassionateabouthelpingthosewhoarelivingwiththisunpredictablediseasestaypositiveandnevergiveup.WeneedtofightthisfightandthemorehandswehavethebetterwewilldoandthefurtherwewillgoDinaenjoyshelpingthoseinneedandencouragingotherstoliveinthehereandnow.Positiveattitudepositivemind.Nevergiveupismymotto.Dinaistheproudparentofanactiveandhealthy8-year-oldson.TwylaLeeCochranCopperhillTenn.Agrandmalseizureonher42ndbirthdayledtoTwylaCochransMSdiagnosis.Afterseeingmanyphysiciansshewasinformedthatshehadsevenlesionsonherbrainandoneonherspine.AlthoughshewasinitiallytoldbydoctorsnottoinformothersthatshewasbattlingMSshechosenottobesilencedbythisdisease.Ithasbeenfouryearssincethatfatefuldayandherlifehasdoneacomplete180.Despitestrugglingwithsymptomsoffatigueandheadachessheremainshopeful.MymissionasanMSFAmbassadoristospreadawareness.ByspreadingawarenesswecanworktogethertoraisefundingeducateothersandobtainresourcesforthosewithMS.PriortobeingdiagnosedTwylawasanofficemanagerforanOBGYNbutduetotheeffectsofherdisease-modifyingdrugshassincebecomeahousewife.Iwanttoberememberedbymyfamilyfriendsandcommunityasafighter.IwanttoknowthatIdidevery-thingwithinmypowertobringawarenessandhopeforthoseinthefuture.AshliHopsonSuwaneeGa.ForAshliHopsononeofthebestdaysofherlifewaswhenshegraduatedfromAuburnUniversity.Howeverthefeelingwasshort-lived.AfteraboutwithvertigoandgoingblindfortwoweeksageneralneurologistspeculatedthatshehadMS.IwentfrombeingontopoftheworldtofeelinglikeeverythingIaccomplishedhadbeentakenawayfromme.AfteranofficialdiagnosisAshlifoundherhealthdestabilizingasshewashospitalizedseventoeighttimesayearandexperiencedacuteexacerbationsregularly.Howevershedidnotlethercircumstancesundermineherfaith.WithlifestylechangesandarenewedpositiveattitudeAshlihasbeenabletolendhervoiceandshareherexperienceswithothers.BykeepingthelinesofcommunicationopenAshlihopestoabolishtheovergeneralizationsassociatedwithpeoplelivingwithMS.AsanMSFAmbassadorshehopestobridgethegapinthecommunitybyencouragingandraisingawareness.IwilldothisbyspeakingtostaffindoctorsofficesandteachingthelocalfirefightersandpoliceofficershowtorecognizesignsofanMSexacerbationversusinebriation. MSFocusSummer201423SheriPaulsonGalesburgN.D.Thehappiestpeopledonothavethebestofeverythingtheymakethebestofeverything.LivingbythismottoSheriPaulsonhasnotletherMSdiagnosiskeepherdown.SincebeingdiagnosedwithMSinApril2001shehascontinuouslyworkedtomakeadifferenceinthelivesofMSpatientswhilegivinghertimeandenergytosupportvariouscauses.Thishasgivenherlifegreatpurposeandfulfillment.Shehasbeenactivewithfundraisingteamleadingsharingherstoryadvocatingforothersworkingonpublicpolicyreformvolunteeringanddonatingtocharities.SherihassetagoaltodoanMSeventinall50statesby2020whetherthatisabikeridewalkorspeakingevent.Sheonlyhas24statestogoWhenSheriisnotvolunteeringshelovesspendingtimewithherfamilyatthelakesoronthefarminGalesburgN.D.HerfamilyincludeshusbandAlandaughterAmandaandfaithfulfriendandsidekickJazzythegoldenretriever.JodiCooleyValleyVillageCalif.JodiCooleyisnostrangertotheeffectsofMS.MShasbeeninmylifesinceIwas6yearsoldasmymotherwasafflictedwiththisdisease.Aftergivingbirthtoherdaughterin2005Jodiwasalsodiagnosed.EventhoughsheadmitsherpridewouldntallowhertoaccepttheprognosisshehassincecometoliveafullhappylifewithMS.Shewantstoremindothersthattheyarenotaloneandsheencouragesthemtogetintocommunitytolearnfromothersinthesamesituation.AsanMSFAmbassadorJodihopestospreadthewordoftheMSFandtoempowerthoseinneedtoknowthatthereareindividualsavailablewhocanhelp.TheMSFhashelpedmeinsomanywaysfromtheCoolingProgramthatprovidedcoolingveststokeepcoolintheCaliforniaheattotheAssistiveTechnologyProgramthatprovidedaliftonmyvan.Iwanttogivebacktotheorganizationthathasdonesomuchforme.ThroughvisualworkshopsandspeakingengagementsJodiplanstoshareherstorywithallwhowilllisten.MichelleSanfielKissimmeeFla.AlthoughMichellewasofficiallydiagnosedwithprogressiverelapsingmultiplesclerosisfiveyearsagoshehasbeenbattlingsymptomsoftheillnessforatleasteight.NowboundtoapowerchairduetoparalysisMichellehopesthatbyparticipatinginMS-relatedeventsspeakingatsupportgroupmeetingsandinteractingwiththemedicalcommunityotherswillbemoresympathetictotheday-to-daychallengesfacingsomeonewhoislivingwithMS.IttookmeawhiletofigureitoutbutnowIunderstandwhatmypurposeisandifIcanatleasthelpeducateonepersonIhavedonemyjob.MichelleisanactivistadvocatevolunteerforUnitedforCareandavolunteerforhospice.WhileshemayhaveMSsheproudlyexclaimsItdoesnthaveme.MichelleiswifetoFrankieandmomtofourchildrenincludinga15yearold14yearoldandasetof10-year-oldtwins.Michelleconsidersherfamilyherworld. 24MSFocusSummer2014MarleneMcDanielCitrusHeightsCalif.BornandraisedinCaliforniaMarleneMcDanielwasdiagnosedwithMSinNovember2005.Havingactivelyworkedforatransporta-tioncompanyformostofheradultlifeshewasforcedtoretirejustthreemonthsafterherdiagnosis.SheadmitsthatshehasseentheuglysideofMSthefatiguedepressionlonelinessfrustrationandpain.ShewantsotherstoknowthatwhileshemaynotlooksickMSaffectseachpersondifferently.AsanMSFAmbassadorshehopestoeducateothersabouttheillnessandsharehertipsforperseveranceandfindingthesilverlining.IbelievethatmypassionforhelpingothersalongwithmypersonalknowledgeandexperiencewithMSmakemeastrongambassador.Inadditiontovolunteeringforthelocalsheriffsdepartmentsheisactivelyinvolvedintwosupportgroupsreachingover8000people.WhilefocusingonhelpingotherswhoarenewlydiagnosedMarlenehopestoexpoundontheillnesstothosewhodonotunderstand.ShecurrentlylivesinNorthernCaliforniawithhercatElvis.DianaValerianoThousandOaksCalif.DianaValerianowasdiagnosedwithMSmorethan30yearsago.Whilesheadmitsthatthediseasehaschangedherlifedrasticallysheisproudtosaythatwitheachchallengecomesanotherfeat.Confinedtoamotorizedwheelchair247Dianahaslearnedtomanageherlimitedmobilityincludingtrainingherselftowriteanduseacomputerwithherlefthandonceherrightonebecameparalyzed.InadditiontoservingasapeercounselortothosenewlydiagnosedwithMSshehopestocontinuethepathofpastfundraisingeffortswhichincludedapublishedcook-bookofrecipeswithproceedssupportingMSresearch.Dianahopestodonatehertimeandenergytomakesureothersunderstandhowtheillnessaffectslives.AssomeoneafflictedwiththisillnessIamabletoidentifyandrelatetochallengesthatthosenewlydiagnosedmaybefacing.IamhonoredtohavebeenchosentorepresenttheMultipleSclerosisFoundationasanAmbassador.Livelifetothefullestishermottoandsheplansondoingjustthat. 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. WerecentlycaughtupwithMSFAmbassadorNickMarchesaniwhohadjustreturnedfromleadingaChairZumbaclassontheJerseyShoreandaskedhimtotellusaboutChairZumbaandhowitbenefitspeoplewithMS.NicksChairZumbasessiononthelastMSFCruiseforaCausewassuchahitthathesbeenaskedtoreturntobringmorefunenergizingChairZumbasessionstothenextMSFcruiseinFebruary2015seepage25formoreinformation.HowwouldyoudescribeChairZumbaChairZumbaagenreofZumbaGoldisofferedtoparticipantswithphysicalphysiologicalorpsychologicallimitations.ChairZumbaisamodifiedversionofZumbathatteachesparticipantsalternativeversionsoforiginalZumbadancestepswhilefocusingonthespecialneedsthatdisabledindividualsbringtofitness.CanpeoplewithverylimitedmobilitydoChairZumbaChairZumbaexercisesaredesignedforthosewhohaveseverelylimitedmobility.ThemajorityofmyChairZumbaclassesarecompletelydonewhilesittinginachair.Modifiedmovementsareavailableforthosewhohavemoremobility.Awell-trainedlicensedinstructorwhorecognizesandunderstandsaparticipantslevelofabilitycaninstantlymodifythemovestoasongallowingtheindividualtoparticipateseamlesslyinunitywithallclasspartici-pants.Asalwaysconsultyourdoctorbeforestartinganexerciseprogram.HowlongdoessomeoneneedtodoChairZumbainordertogetabenefitfromitEachindividualisdifferent.IbelievethetruebenefitsareseenwhenaparticipantislaughingandsmilingDeletingthewordsIcantfromapersonsvocabularyandreplacingthemwithIcangivestheindividualapositiveattitude.Withtimethebrainwillfinddetoursarounddamagednervesandlesions.Weakmusclesinthearmslegsquadsandhamstringswillgetsupportfromnewlystrengthenedanddevelopedmuscleslesseningthebreakdownoftendonsandcartilage.Intheoryasapersonbecomesmorepositivephysicallyaswellasmentallythebodywillrelax.Themuscleswillloosenandthestiffnesswilldisappear.Againpeoplereactdifferentlyatdifferenttimes.Alwaysmakesureyourcorebodytemperatureislowandyoudrinkplentyofcoldwater.26MSFocusSummer2014 WhatkindofmusicprovidesthebasisforChairZumbaChairZumbainvolvesdanceandaerobicelements.Itschoreographyisinspiredbyhip-hopLatinreggaeandmainstreamtop40musictokeepallinvolvedphysicallyaswellasmentally.ItspsychologicalconceptistohavetheparticipantsthinkingofthegreattimesandlaughterthatIincorporateintheworkout.FamiliaritywiththesongsisanabsolutemustIfyoudonthaveaclassinyourareacanyoudoChairZumbaonyourownStrengthisinnumbers.DoingChairZumbaonyourowngenerallywillnotwork.Aftercompletingphysicaloroccupationaltherapyinstructionsaregivenwiththeworkoutstodoathomealonehoweverthemajorityofpeoplewillneverrevisittheexerciseoriftheydotheywontdoitcorrectlyresultinginre-injury.ChairZumbaisnodifferent.IrecommendthatpeoplealwayshavealicensedZumbainstructorspecializinginChairZumbaaroundtomonitoryourabilities.Thatinstructorwillworkwithyoutoadjustamovementtobetteryourabilitiesinasafealternativeandeffectiveway.HowdidyougetinvolvedinChairZumbaandhowhasithelpedyouWhileatalocalgymIheardmusicandclappingcomingfromaroom.Itsoundedlikeaparty.Ilookedinandsawpeopledancinginunison.Ilookedtowardthefrontoftheroomandsawaninstructorinfluorescentcolorsleadingtheclass.Thecolorsbroughtmebacktothe80swhenIwasrunningaroundinhighschoolwearingthesamecoloredclothes.ThewholepackageofmusicdancemovesandlaughtergotmehookedZumbahadmemovingagainandbroughtasmilebacktomyface.MylegswereweakwhenIstartedandIcouldnotbendmykneesorankles.Mylegsweretwo-by-foursButIdidnotcare.IstayedinthemiddleofthepackedroomasIdancedlaughedandsangtothemusic.OnthewholetheclassesIhaveattendedbroughtbackmypositivityandmymobility.Inmymindtherewasnostoppingme.Istartedimaginingmyselfdoingeachmovementliketheinstructor.LittlebylittleIwasdoingit.AcoupleofyearslaterItookcoursestobelicensedasaZumbaandZumbaGoldInstructorwhichallowmetoteachChairZumba.WhatwasitlikeleadingChairZumbaonthelastcruiseWhatdoyouhaveplannedfornextyearscruisersInstructingChairZumbaonthe2014MSFCruiseforaCausemademeproudofwhatIvemadeofmyselfafterbeingdiagnosedwithMS.IwantedtogivebacktoothersandImadethathappenTheenergyfromtheattendeeswasincredibleAslaughterandsinginggrewlouderduringclassIknewtheywerehavingfunandthinkingwhichsongmaybenextWhatamIplanningforthe2015MSFCruiseforaCauseChairZumbaclasswillbefocusedonathemethatweallcanrelatetoDontHoldBackItwillbeenergizingfunandwillhavemeaningforallwhoattend.IamresearchinganendlesscollectionofCDsMP3sandstacksofwaxforthemostupliftingpositiveandfunsongsthatweallcansinganddancetoaswellashelpuswithourbalanceandstrength.Itsaboutfindingourinnerabilities27MSFocusSummer2014 28MSFocusSummer2014IwasaneurosurgicalICUnurseforseveralyearsbeforebeingdiagnosedwithMS.AftermydiagnosisIdecidedtogetmyMScertificationandbeganworkingasanurseinanMScenter.SincethenIhavebeenplayingtheroleofbothapatientandaprovider.BecauseIamanurseIamgoodatnavigatinginsuranceclaimsandadvocatingformyselfduringvisitstothedoctor.Howeverthemajorityofpatientsdonthaveahealthcareback-ground.TodayIamgoingtoteachyouonesimplewaytobeyourownadvocate.Inthehospitaleveryprofessionalfromdoctorstophysicaltherapistsdependsonpatientchartstodotheirjobs.ArguablythechartisjustasimportantasthepatientwhichmaysoundheartlessbuthearmeoutPatientsforgetdetailsorsometimesevenlieaboutthemonpurpose.MSbrainisarealthinganditsnotyourfaultthatyoucantrememberyourmedicationseverytestresultyouhaveevergottenbackorwhoyoururologistis.Thecharthoweverneverdeceives.Itcontainsallofthedataresultsandhardevidencethatletsusdoourjobs.Mostofusarenotinahospitalorfacilitywhereallofourinformationiskeptinoneplace.Webouncefromspecialisttospecialistbetweenmultipleofficesandmedicalcenters.Ourchartdoesntfollowuseverywherewegobutinsteadwehaveseveralchartsinseveraldifferentofficeseachoneonlycontainingpartofourstory.Haveyouevermovedandexperiencedthefrustrationofgettingallyourrecordsfrom10differentdoctorssenttoyournewproviderWouldntitbeniceifyourchartcouldfollowyoueverywheretoavoidthosesituationsWellminedoesandyourscantooIstartedwithastandardbinderandorganizedithowahospitalchartwouldbeorganized.IthasbeensohelpfulandeverydoctorthatIvisitisgratefultohaveanorganizedrecordofmymedicalhistory.Youhavetherighttohavecopiesofallmedicalrecordsandtestresultsyoujusthavetoaskforthem.AdditionallyMRIsandotherradiologyresultscanbeburnedontoaCDforyouoftenfreeofcharge.HereishowIorganizedmychartIhopeitinspiresyoutodosomethingsimilarFrontFlapAlistofallcurrentmedicationsandallergies.Formedicationsincludethenameofthemedicationthedosageandhowoftenyoutakeit.Forallergiesrecordwhatkindofallergicreactionyouhade.g.rashtroublebreathingetc.CDsofMRIimagesAlistofquestionsthatyoudontwanttoforgettoask.OnthefirstdividerItapethebusinesscardsofdoctorssocialworkersandotherprofessionalsthatareinvolvedinmycare.WhenIneedtocontactsomeoneIneverhavetosearchfortheircontactByStephanieButlerNPMSCN LetusknowwhatyouthoughtofthisorotherarticlesEmailyourcommentstoeditormsfocus.orgormailtotheaddressonthebackcoverAttnMSFocusLettersColumn.29MSFocusSummer2014informationandwhenIminadoctorsofficeandtheywanttosendrecordstoanotheroneofmyspecialistsIalwayshavefaxnumbersrightthere.NextIhavefoursectionsseparatedbydividers1.LabandDiagnosticStudiesRecentbloodworkandanyspecialbloodtestslikelymetitersLumbarpuncturespinaltapresultsMRIreportsEvokedpotentialreportsVisualtestresults.2.ProgressNotesVisitnotesfromdoctorsifyourdoctorsofficewillprovidethem.3.HospitalAdmissionsDatesofeveryhospitaladmissionbriefnotesabouttheadmissionandanyimportantpaperwork.4.InsurancePaperworkandBillingCopiesofbillsEnrollmentinformationforcopayassistanceprogramsCopiesofinsurancedenialapprovallettersfortestsandmedicationsReceiptsofallcopaysbecausetheyaretax-deductibleWhichdiseasemodifyingdrugsyouhavebeenonthedatesandwhyyouswitchedoffofthem.Thisalsocanhelpspeeduptheapprovalprocesswithyourinsurancecompanyifyouhavetoswitchtoanewdrug.BeinganinformedpatientshouldbeapriorityforeveryonewithMSandeveryonewhocaresforsomeonewithMS.Havingwell-organizedrecordscanhelpprovidersgiveyouthebestcarepossibleandmayevenspareyoufromhavingtorepeatunpleasanttestsandexams.Evenifyoudontcreateanentirecharthavingcopiesofimportanttestresultsisalwaysagoodidea.IoncemetadoctorwhoseofficewastragicallylosttoafirealongwithallthemedicalrecordsofallofhispatientsHavingyourownrecordsevenjustasaback-upcanonlyhelpyoumanageyourMS.ReadStephanieButlersBioonpage31.T-ShirtsSweatshirtsBearsCoolingItemsJewelryOrangeRibbonAwarenessItemsCarMagnetsandsomuchmore.Seeouronlinecatalogatwww.themsshoppe.com920238-5138infothemsshoppe.comAportionofallproceedsgoestotheMSF Difficultywithwalkingorgaitisoneofthosecommonsymptomsofmultiplesclerosis.Therearemanycausesofgaitissuesincludingmuscleweaknessfootdropmusclespasmsbalancedifficultylossofsensationandfatigue.Ifyouhavedifficultywalkingyourneurologistwilltrytoidentifythecauseandwillaccordinglypickthetreatmentthatisbestforyou.Oneparticularcauseofwalkingdifficultyisfootdropwhichisthefocusofthisarticle.Footdropoccurswhenthemusclesofyourlegareweakorwhentheperonealnervewhichrunsdownyourlegtoyourfootisdamaged.Thiscausesthefoottoconstantlypointtoesdownasifyouweresittingwithyourlegsdanglingofftheedgeofatallchair.Normallywhilewalkingwepickupourlegpointourtoesupandstepdownontotheheelofourfootwhichallowsustopropelforward.Apersonwithfootdropcannotpointhisorhertoesupwhiletakingastepcausingthetoestodrag.Becausethetoesdragonthegroundtheyaremorelikelytocatchoncarpetingstairsorotherobstacleswhilewalking.Thebiggestriskassociatedwithfootdropisthatitcancausethepersontotripandfall.Fallsareamajorconcernbecausetheycanleadtoseriouscomplicationssuchasbrokenbonesorheadinjuries.Footdropmayoccurduringarelapseandgetbetterwithtimeoritmaybecomepermanent.Ineithercasethereareafewtreatmentstohelpmanageit.ThefirstisphysicaltherapyPT.ThegoalofPTistostrengthenthemusclesinthelegandtohelptrainthebodytowalknormallyagain.Oftenatypeofbracecalledanankle-footorthosisAFOisusedinadditiontoPT.AFOsgounderthefootlikethesoleofashoeandcomeupthebackofthelegwhereitissecuredtothelowerlegwithastrap.Thiskeepsthefootinaneutralpositionandkeepsthetoesfrompointingdownwhenthelegisliftedtotakeastep.Manypeoplelikeusingthembecausetheyfiteasilyintoshoesareverysupportiveandeffectivelypreventfallswhileimprovinggait.AnothermethodthatmanyMSpatientsfindtobehelpfulisnervestimulation.Thebrainnormallytalkstoyournervesandtellsthemwhattodobysendinganelectricalsignaltothem.IfthemyelincoveringthenerveisdamagedbyMSthenthenerveessentiallybecomesafrayedelectricalwire.Signalscannolongertravelproperlycuttingoffcommunicationfromthebrain.FunctionalelectricalstimulationFEScreatesitsownelectricalsignalandstimulatesthenervethathaslostitscommunicationwiththebrain.MSFocusSummer201430ByStephanieButlerNPMSCN MSFocusSummer201431StephanieButlerisanICUnursewhowasdiagnosedwithmultiplesclerosisattheageof25.SixmonthsafterbeingdiagnosedshebecameamultiplesclerosiscertifiednurseandstartedworkingintheMScenterwhereshewasapatient.Herdiagnosiswasadefiningmomentinherlifebutshefeelsthatithasmadeherabetternurseandabetterperson.SheisalsoattendinggraduateschooltobecomeanursepractitionerandshehopestocontinueworkingwithpeoplewhohaveMSforaverylongtime.ShealsowritesforMultipleSclerosis.netandservesontheAdvocacyCommitteeattheNewJerseyMetroChapteroftheMSSociety.Herblogwww.justkeepsmyelin.comoffersauniqueperspectiveonmultiplesclerosisfromthepointofviewofbothahealthcareproviderandasapersonlivingwiththediseaseeveryday.HermissionistobringcompassionhumorandadeeperunderstandingofMStoanyonewhoreadsit.TherearetwodifferentdevicestheWalkAideandtheNESSwhicharebothsmallbattery-operateddevicesthatarewornunderthekneeandovertheperonealnerve.Thedeviceactivatesthenervewhichinturnsignalsthelegmusclestopickupthefoot.TheyarefittedbyaphysicaltherapistoranorthotistandhavebeenshowntoimprovewalkingspeedinsomepeoplewithMS.HoweverthistechniquedoesnotworkforeveryonewithMSbecauseitrequiresthedamagetobecontainedonlyinthenerveandmuscleusedinliftingthefoot.IfothermusclesandnervesinthelegarealsodamagedthenFESwillnotimprovethepersonsgaitsinceitonlyactivatestheperonealnerve.AmedicationcalledAmpyrahasalsobeenshowntoimprovewalkingspeedandgait.Itisprimarilyprescribedtoimprovelegweaknessanditalsoimprovesfootdropinsomecases.Thoughitisunclearhowthemedicationworksitisthoughttoimprovenervefunctionbyactingonpotassiumchannels.Ampyraisapillthatistakentwicedailyandcannotbetakenbyanyonewhohasahistoryofkidneydiseaseorseizures.UsuallyAmpryaistriedforafewweekstoseeifitwillhelptoimprovegaitandifanimprovementisseenthenitiscontinued.Footdropisarelativelycommoncauseofgaitdisturbances.Itcanhaveasevereimpactonapersonsabilitytowalkandcancauseseriousfalls.InterventionsincludingphysicaltherapybracesFESandAmpyrahavebeenshowntohelpimprovesymptomsandthequalityoflifeofthosewhoexperiencefootdrop. PatientInformationTECFIDERAtekfiderahdimethylfumaratedelayed-releasecapsulesWhatisTECFIDERABeforetakingandwhileyoutakeTECFIDERAtellyourdoctorifyouhaveorhavehadTellyourdoctorifyouareHowshouldItakeTECFIDERAWhatarethepossiblesideeffectsofTECFIDERATECFIDERAmaycauseserioussideeffectsincludingdecreasesinyourwhitebloodcellcountThemostcommonsideeffectsofTECFIDERAincludeFormoreinformationgotodailymed.nlm.nih.gov.GeneralInformationaboutthesafeandeffectiveuseofTECFIDERAWhataretheingredientsinTECFIDERAActiveingredientInactiveingredientsCapsuleShell MSFocusSummer201435TheinformationkeepsonflowingWevearrangedforthreemoreamazingteleconferences.CheckoutthefantasticlineupofexpertsstandingbytohelpyoulivebetterwithMSAugust12AsktheDoctorwithBenThrowerMDYouvegotquestionshesgotanswersJoinDr.BenMSFsSeniorMedicalAdvisorandDirectoroftheMultipleSclerosisInstituteatShepherdCenterforyourchancetoaskanexpertyourburningMSquestions.September22TheImportanceofAdherencewithMSTreatmentfollowedbyanAskthePharmacistQAwithEllenGuthriePharmDThemanagementofMSfromaphar-maceuticalstandpointcanbecomplexLearnhowtosuccessfullyadheretoyourtreatmentregimewithEllenGuthriePharmDwhoisanassistantclinicalprofessorattheUniversityofGeorgiaandadvisortotheMSF.October22PromotingPatient-CenteredCarewithHealthInformationTechnologywithJennieQ.LouMDMScHowcanmobiletechnologyandsocialmediaaidinyourMScareorrehabilitationHowdoestechnologypromotepatient-centeredcarewithyouasthefocusLearnhowwithDr.JennieQ.LouprofessorofBiomedicalInformaticsNovaSoutheasternUniversity.Theseeducationalsessionsareeasytojoin.Noregistrationisrequired.Atthetimeofthecallsimplydial888-560-5502andentercode23441168.Toviewtheslidepresentationgotohttpswww.spiderphone.com23441168.AppsIncreaseAccesstoMSFocusRadioToaccessMSFocusRadioonyouriPhoneiPadiOSallyouhavetodoislogontotheAppStoreandsearchMSFocus.TheMSFocusRadioappwillappearclickInstall.ToaccessMSFocusRadioonyourAndroiddevicesimplylogontoGooglePlayandsearchMSFocus.TheMSFocusRadioappwillappearclickInstall.OncetheapphasdownloadedlookonyourphonefortheMSFocusRadioicon.ClickontheappitwillopenourplayerandallowyoutohearinterviewsteleconferencesaudiofromtheMSFCruiseforaCauseandnewsarticlesfromMSFocusmagazine24hoursaday7daysaweek.DialingforAnswersScanwithyourmobiledevicetovisitMSFocusRadionow. MSFocusSummer201436ShawnDuffyExercisehelpsmeraiseMSawareness.Icannowattendeventstwotothreedaysmostweeks.FaithQuigleyIwalkasmuchasIcanwhenIamable.DebbieVogel-ShearerIexercisefivedaysaweektostrengthenmylegs.NowIamabletowalkupstairsAlisonPottsIamayogateacherandIpracticeyogaeverydayincludinghomepractice.IwalkinthesunshineforVitaminDandincreasedmentalhealthandexerciseallatthesametime.DawnTownsendYogarocksMichelleWalkerIridemystationarybikefivedaysaweekfor30minutes.IdosquatsfivedaysaweekbutIhavetoholdontomywalkerwhiledoingthem.Ialsodocalfstretchesandpush-upsonthewall.Istretchwithanelasticbandformyarms.Ifeelgoodbeforeandaftermyworkout.Mysonlikestoworkoutwithmetoo.HedoesthecountingformebecauseIcanneverremembermynumbersinorder.LOLErikaBolinIdoyoga.Theteacherhastwosturdychairsfrontandbackformetoadaptalong.Shealsohasafanonme.Iusemyramptowalkupanddowntokeepspasmsawayishandapedals-onlybike3xaweektokeepmylegsmoving.Ifeelbetterafterandithelpsmymood.Especiallyyogaitissocialtoo.DonnaCherryIvebeengoingtothegymeveryotherdayIfeelbetterandenergetic.RobinStachIdoneuro-pilatesyogafivedaysaweekmodifiedstrengthtrainingthreetimesaweekbreathingplusvoiceanddictionexerciseshandexerciseswithbaoudinballsthedancecentralgameinfiveminuteintervalsfourtofivetimesadaymybreathingisreducedplusregularkegals.IhadareallybadrelapseorshouldIsayworseningofsymptomsandaninfectionthatstoppedexerciseforayear.Ialsolostalotoffunction.Thefirstthreeweeksweremiserablebuttheimbalancesarestartingtogetworkedoutfinally.Iknowthatthefirstsixmonthstotwoyearspost-worseningisthebesttimetoregeneratenervefunctionandbrainfunctionsoIamhittingitashardasIcanwithoutexhaustingmyself.ThelasttimeImadeittowhereIcouldgooutagain.ThistimeIambackupanddownthestairssoIcanatleastpetmydogswhichisagreatcomfort.Myenergyisincreasingandmyribsarestartingtoexpandfarmoreforeasierbreathing.FacebookFeedbackisyourchancetoshareinadvanceyourexperiencesrelatedtotopicscoveredintheMSFocus.LikeourFacebookpageatwww.facebook.comMultipleSclerosisFoundationandwatchforournextFacebookFeedbackpost.OurquestionforthiseditionwasWhatdoyoudoforexerciseandhowhasitchangedyourlife MSFocusSummer201437TMDaunHecklerCloosUpuntil2011Ihadtouseacanewalkerwheelchairandascooter.IamtakingTysabriandAmpyraandIwasabletoputawayallmyassistivedevices.Isignedupfora5kraceonawhimandfinishedin124.Notbadforafirst-timer.IwalkatonamgettingreadytostartbackatthegymandwillbeaddingweighttrainingtowhatIdo.Ihavenowcompletedmany5kracessome10kracesandwillbewalkingintwohalfmarathonsthisyear.MyfiveyearplanistowalktheChicagoMarathonbythetimeIturn50.ItwilltakealotofdedicationandeffortbutIknowIcangetitdonewithpropertraining.VanessaExelbyIwalkandjog.IcompletedtheNikeHalfMarathoninSanFranciscolastOctober IamthewindThatismynameIusedtospanfromagentlebreezeRightonuptoahurricaneButlatelythespanhasntbeensogreatWithlesstouseIhesitateIguesswhatnowmustbemygoalLivelessfrombodyAndmorefromsoul-KeithA.OtisKeithOtislivesinChicagoIll.HecomposesandrecordsmusicinahomestudiowritespoetryandhasablogatKAO33Wordpress.comwherehewritesaboutspiritualandmetaphysicalmatters.KeithwasdiagnosedwithMSinJune2001.Hewrotethispoemabouttwoyearsafterhewasdiagnosedwhenhisphysicalabilitiesstartedtodeteriorate.ThenameKeithisGaelicanditmeansthewind.MSFocusSummer201438 39MSFocusSummer2014 MSFocusSummer201441TheMultipleSclerosisFoundationIndependentSupportGroupNetworkisgrowingPleasewelcomethefollowingnewlyaffiliatedgroupsAfricanAmericanInspirationalMSSupportGroupHamptonVa.MSinMotionSupportGroupOrlandoFla.LakeMagdaleneMSSupportGroupTampaFla.MSRUsSupportGroupDothanAla.MSWarriorsofSouthwestLouisianaSupportGroupLakeCharlesLa.StockbridgeMSSupportGroupStockbridgeGa.WarriorsSurvivorsMSSupportGroupCharlestonS.C.WeCareandShareMSSupportGroupBradentonFla.Pleasevisitourwebsiteatwww.msfocus.orgsupport-groups.aspxforthemeetingdatestimesandlocationsoftheabovelistedsupportgroups.TheMSFwelcomesyoutostartoraffiliateyourMSsupportgroupwithourNetworktodayAstheMSFsSupportGroupCoordinatorIprovidepersonalizedone-on-onephoneandemailsupporttogroupleadersandco-leadersthroughouttheyear.Imalwayshappytoanswerquestionsbrainstormhelpresolveproblemsandprovideguidance.ForthosewhoarehopingtocreateanewsupportgroupIamavailabletoassistateachstepoftheway.ForthosewhoarehopingtoaffiliateanalreadyestablishedsupportgrouptheMSFprovidesmanytypesofuniqueassistance.AspartoftheMSFIndependentSupportGroupNetworkyouwillbeabletoReceiveanoutlineoftopicsbookletsrelatedfactsheetsandideasformeetingdiscussionsListyourgroupintheNationalIndependentSupportGroupDirectoryontheMSFswebsiteGiveeachofyourmembersanMSFSupportGroupWelcomeKitacolorfulfunandengagingpackageofmaterialsBetheeyesandearsoftheMSFandsharetheneedsofyourlocalMScommunitywithusAdvertiseyourmeetingstoawideraudiencewithinyourcommunityAndreceivematerialssupportresourcesandmorefromtheMSFthroughouttheyearTolearnmoreabouttheMSFsSupportGroupProgramandhowyoucanapplytostartoraffiliateyoursupportgrouppleasecontactmeviaphoneat888-MSFOCUS673-6287orviaemailatalissamsfocus.org.IlookforwardtohearingfromyouByAlissaAyden MSFocusSummer201442HelpUsHelpYouandwinafreetabletYourfeedbackisvitaltothequalityofMSFocus.Pleasefilloutandreturnthisbriefsurvey.Onerandomly-selectedresponderwillreceiveafreetabletcomputerHowlonghaveyousubscribedtoMSFocusLessthanoneyearMorethanoneyearMorethantwoyearsMorethanfiveyearsDoyouReadMSFocuscovertocoverReadonlyarticlesthatapplytoyouReadonlycertainfeaturesHowinterestedareyouinthefollowingtopics1-5scale1beingnotinterested5beingveryinterestedMedicalinformation12345Symptommanagement12345Complementaryalternativemedicine12345Humaninterest12345Tipsforcaregivers12345First-personaccountsoflivingwithMS12345AssistiveTechnology12345DietExercise12345HowfamiliarareyouwiththefollowingMSFprogramsservicesNotfamiliarSomewhatfamiliarVeryfamiliarHaveusedNationaltoll-freehelplineLendingLibrarySupportGroupProgramHomecareGrantProgramAssistiveTechnologyProgramCoolingEquipmentProgramHealthWellnessProgramComputerGrantProgramBrighterTomorrowGrantProgramMSFocusRadioInordertobeenteredintotherandomdrawingpleaseprovideyourcontactinformation.NameAddressPhoneEmailaddressMailtoMultipleSclerosisFoundation6520NorthAndrewsAvenueFortLauderdaleFL33309-2132.AttentionMSFocusSurvey.MSFvaluesyourprivacyandwillnevergivesellortradeyourpersonalinformationtoanyotherorganizationorcompany.ByprovidingyouremailaddressyouareautomaticallyregisteredtoreceiveoccasionalbriefannouncementsfromtheMSFaboutprogramsandservicesthatareavailable.Anoptiontoopt-outisincludedwitheachannouncement. EachyeartheMSFmakesdreamscometrueforindividualswithMSthroughtheBrighterTomorrowGrantProgram.ThegoalofthisnationalprogramistoprovidegoodsorservicestoimprovequalityoflifeforthoselivingwithMSbyenhancingsafetyself-sufficiencycomfortorwell-being.InthepastrecipientsoftheBrighterTomorrowGranthavereceivedadaptivesportsequipmentappliancestelevisionsfurnituretireshobbysuppliesliftchairsmusicalinstrumentspartialscholarshipsfortheMSFCruiseforaCauseandmore.Thosewhoappliedinthepastandwerenotgrantrecipientsareencouragedtoreapply.PreviousrecipientsoftheBrighterTomorrowGrantareineligible.Applicationsareconfidentialandwillbereviewedbythegrantcommittee.RecipientswillbenotifiedinDecember.OFFICIALGUIDELINESTOAPPLYApplicantsareaskedtoprovidebasicpersonalandfinancialinformationalongwithabriefessayofonepageorlesstodescribetheirwishandhowthegrantmighthelpthemtohaveABrighterTomorrow.GrantapplicantsmustmeetthefollowingeligibilitycriteriaApplicantmustbediagnosedwithMSorbetheparentofaminorchildwithMS.Applicantmustbeovertheageof18.ApplicantmusthavenoexistingfinancialnetsuchasMedicaidorprivateinsurancetocovertherequest.ApplicantgrantstheMSFtherighttousetheirnameandphotographforpromotionalpurposesassociatedwiththisgrant.Applicantmustagreetosignawaiverofliability.ApplicantmustbealegalresidentoftheUnitedStates.Applicationmustbepostmarkedtime-stampedonorbeforeSeptember1st.Requestmustbeforspecificgoodsorservices.Ifthecostoftherequestexceeds1000dollarstheapplicationwillautomaticallybedisqualified.RequestsforcashmedicationsoritemscurrentlyavailablethroughtheMSFAssistiveTechnologyCoolingComputerorHealthandWellnessprogramswillnotbeconsidered.SendyourcompletedapplicationtoMultipleSclerosisFoundationBTGCommittee6520NorthAndrewsAve.Ft.LauderdaleFL33309Applicationscanalsobesubmittedonlineatwww.msfocus.org.BRIGHTERTOMORROWGRANTPROGRAMMakingDreamsComeTrueMSFocusSummer201443 44MSFocusSummer2014IcertifythatthefactscontainedinthisapplicationaretrueandcompletetothebestofmyknowledgeandIauthorizeverificationofallstatementscontainedherein.SIGNATUREDATENAME_______________________________________________________________ADDRESS___________________________________________________________CITY______________________STATE_____ZIP________COUNTY___________DAYPHONE____________________ALTERNATEPHONE___________________E-MAILADDRESS__________________________DATEOFBIRTH___________PHYSICIANSNAME________________________PHYSICIANSPHONE_______________________DATEDIAGNOSED_________MONTHLYGROSSINCOME________________MONTHLYEXPENSES_____________________REQUESTEDITEM___________________________________________________ESTIMATEDCOSTOFITEM_____________________InonepageorlessexplainhowtheBrighterTomorrowGrantofnomorethan1000ingoodsorserviceswouldhelpyouhaveabrightertomorrow.Additionalpapermaybeusedifneedednottoexceedonepage.BRIGHTERTOMORROWGRANT 45MSFocusSummer2014AnnualCaregiversNightOutContestGIVETHANKSTOYOURCAREGIVERHasyourspousechildrelativefriendorneighborgoneaboveandbeyondthecallofdutytohelpyouThenhonorthemthisNovemberduringNationalFamilyCaregiversMonthbysharingyourstory.KeepinmindthatweseekstorieswithheartnotflawlessgrammarorperfectpenmanshipWinnerswillreceivedinnerfortwoatarestaurantoftheirchoiceandtheirstorywillbepublishedinthefallissueofMSFocus.NameAddressCityStateZipCountyDayPhoneAlternatePhoneEmailaddressIn100wordsorlesstelluswhatmakesyourcaregiverspecialandhowheorshehasmadeadifferenceinyourlife.Additionalpapermaybeusedifnecessary.Signature________________________________________Date_________________SubmissionswillbeacceptedAugust1stthroughSeptember1st.Applicationscanbefaxedto954-351-0630ormailedtoCaregiversNightOutContestMultipleSclerosisFoundation6520N.AndrewsAveFt.LauderdaleFL33309.Thisinformationcanalsobeemailedtohomecaremsfocus.org. 46MSFocusSummer2014ByEllenWhippleGuthrieBSPharmDUpdatesbythePharmacistspotlightsthelatestsignificantresearchonMSmedicationsaswellaspharmaceuticalissuessignificanttoMScare.Noendorsementisimplied.Arecentlyreportedstudysuggeststhattreatmentwithestriolmaybenefitpeoplewithrelapsingremittingmultiplesclerosis.AccordingtoBenThrowerMDMedicalDirectorattheShepherdCenterMultipleSclerosisInstituteTreatmentwithestriolisnotanewconcepthowevermostofthedatatodatehaveconsistedofanecdotalreportsandsmallclinicaltrials.Dr.Throwerwentontoexplainthatwhiletheserecentlyreporteddataareintriguingtheywillrequirevalidationinlargerclinicaltrials.Thisarticlereviewsestriolandsummarizesthenewlyreleasedinformationregardingestriol.WhatisEstriolEstriolisoneofthethreemainestrogensproducedbythehumanbody.Estradiolandestronearetheothertwoestrogensproducedbythehumanbody.Estrioldiffersfromestradiolandestronebecauseitisonlyproducedinsignificantamountsduringpregnancy.Estriolismadebytheplacentafrom16-hydroxydehydroepiandrosteronesulfate16-OHDHEASanandrogensteroidmadeinthefetalliverandadrenalglands.Estriolisvirtuallyundetectableinthebodyuntilpregnancywhenitslevelsdrasticallyincrease.Itisthoughtthatthehormoneestriolsuppressestheimmunesystemsothatwomensbodiesdonottreatthefetusasforeignorharmful.Levelsofestriolinnon-pregnantwomendonotchangesignificantlyaftermenopauseandresemblethoseobservedinmen.TheRelationshipBetweenMultipleSclerosisPregnancyandEstriolDatahaveshownthatduringpregnancythereisasignificantreductioninmultiplesclerosis-relatedattacksorrelapses.InfactduringthePRIMSstudytherelapserateinpregnantwomendropped70percentduringthethirdtrimester.Ithasbeenproposedthattheincreasedlevelsofestriolthatarepresentduringpregnancymayberesponsibleforthiseffectsinceestriolsuppressestheimmunesystem.EstriolDataOverthelast20yearsresearchershaveproposedthattreatmentwithestriolmaydecreaserelapsesinpeopleEstriolBackintheNewsAgain 47MSFocusSummer2014withmultiplesclerosis.In2002asmallstudyin10non-pregnantpatientsfoundthattreatmentwithestrioldecreasedthenumberoflesionsby70percent.Otherstudieshaveshownnooronlyamodestgainwithestrioltreatment.ResultsfromatrialcomparingtreatmentwithglatirameracetateCopaxoneplusestriol8mgwithCopaxonemonotherapywererecentlypresentedatthe2014AnnualMeetingoftheAmericanAcademyofNeurology.Atotalof158womenmeanage37.5yearswithrelapsingremittingmultiplesclerosisparticipatedinthisPhaseIIrandomizeddouble-blindmulticenterplacebo-controlledtrial.TheprimaryendpointwasannualizedrelapserateotherendpointsincludedMRIfindingsandsafety.Theparticipantsinthistrialwerefollowedfortwoyears.After12monthsoftreatmenttheannualizedrelapserateforthecombinationtherapygroupwas47percentlowerthaninthepatientswhoonlyreceivedCopaxone.InadditionpatientswhoreceivedcombinationtherapyscoredhigheroncognitivetestsafteroneyearthandidwomenwhowerereceivingCopaxonemonotherapy.Theresultsafter24monthsoftreatmentwerenotasimpressive.AccordingtotheauthorsofthistrialtheresultswereexcitingbutrequiredvalidationinlargerPhaseIIIclinicaltrials.HowCanIReceiveEstriolorParticipateinaClinicalTrialEstriolisnotapprovedbytheUnitedStatesFoodandDrugAdministrationFDA.Compoundingpharmaciescancompoundtheproductbutaprescriptionfromyourdoctorwillberequired.BecauseestriolisnotapprovedbytheUnitedStatesFDAitisnotlikelythatinsurancecompanieswillpayfortheproduct.Forinformationonon-goingclinicaltrialswithestriolspeakwithyourneurologistandrefertowww.clinicaltrials.gov.Whilethesedataareexcitingtreatmentwithestriolisstillexperimental.Estriolshouldnotbeconsideredareplacementforanycurrentlyapproveddisease-modifyingtreatment.StaytunedformoreinformationaboutestriolasaPhaseIIIconfirmatorytrialshouldbeenrollingshortly.EllenGuthriehasbeenamedicaladvisorwiththeMSFsince2002.SheisaclinicalpharmacistemployedasamedicalaffairsspecialistaswellasanassistantclinicalprofessorattheUniversityofGeorgia.ShereceivedherDoctorateofPharmacydegreefromtheUniversityofGeorgiaCollegeofPharmacyin1994andwaslateremployedattheShepherdCenterandChildrensHealthcareofAtlanta.EllenisanactivememberoftheGeorgiaSocietyofHealthSystemPharmacists.ShehasalsoservedonthePharmacyAdvisoryCommitteefortheDepartmentofCommunityandHealth. Italkedtomydoctor.MymedicineisBETASERONinterferonbeta-1b.BETASERONisaprescriptionmedicineusedtoreducethenumberofrelapsesinpeoplewithrelapsingformsofmultiplesclerosisMS.ThisincludespeoplewhohavehadtheirfirstsymptomsofmultiplesclerosisandhaveanMRIconsistentwithmultiplesclerosis.BETASERONwillnotcureMSbutmaydecreasethenumberofflare-upsofthedisease.IMPORTANTSAFETYINFORMATIONDonottakeBETASERONinterferonbeta-1bifyouareallergictointerferonbeta-1btoanotherinterferonbetatohumanalbuminormannitol.PleaseseeadditionalImportantSafetyInformationandbriefsummaryofMedicationGuideonfollowingpages.Youshouldtoo.HeyIknowtheresnocureforMS.WhenitcomestorelapsingremittingmultiplesclerosisRRMS...ButmytherapyhasbeenshowntoreducethenumberofrelapsesinpeoplewithRRMS.1Reference1.BETASERONprescribinginformation.WhippanyNJBayerHealthCarePharmaceuticalsInc.Rev.114.Modelusedforillustrativepurposesonly. BETASERONcancauseserioussideeffectsincludingLiverProblemsIncludingLiverFailure.Symptomsofliverproblemsmayincludeyellowingofyoureyesitchyskinfeelingverytiredflu-likesymptomsnauseaorvomitingbruisingeasilyorbleedingproblems.YourhealthcareproviderwilldobloodteststocheckfortheseproblemswhileyoutakeBETASERON.SeriousAllergicReactions.SeriousallergicreactionscanhappenquicklyandmayhappenafteryourrstdoseofBETASERONorafteryouhavetakenBETASERONmanytimes.Symptomsmayincludedifficultybreathingorswallowingswellingofthemouthortonguerashitchingorskinbumps.DepressionorSuicidalThoughts.Callyourhealthcareproviderrightawayifyouhaveanyofthefollowingsymptomsespeciallyiftheyarenewworseorworryyouthoughtsaboutsuicideordyingneworworsedepressionsinkingfeelingorsadnessneworworseanxietyfeelinguneasynervousorfearfulfornoreasontroublesleepinginsomniaactingaggressivebeingangryorviolentactingondangerousimpulseshallucinationsotherunusualchangesinbehaviorormood.OtherpossibleserioussideeffectswithBETASERONincludeHeartProblems.BETASERONmayworsenheartproblemsincludingcongestiveheartfailure.Symptomsofheartproblemsmayincludeswollenanklesshortnessofbreathdecreasedabilitytoexercisefastheartbeattightnessinchestincreasedneedtourinateatnightnotbeingabletolayatinbed.InjectionSiteProblems.Seriousskinreactionscanhappeninsomepeopleincludingareasofseveredamagetoskinandthetissuebelowtheskinnecrosis.ThesereactionscanhappenanywhereyouinjectBETASERON.Symptomsofinjectionsiteproblemsmayincludeswellingrednessorpainattheinjectionsiteuiddrainagefromtheinjectionsitebreaksinyourskinorblue-blackskindiscoloration.ChangeyourinjectionsiteeachtimeyouinjectBETASERONasitwilllessenthechanceofyouhavingaseriousskinreaction.AvoidinjectingBETASERONintoanareaoftheskinthatissorereddenedinfectedorhasotherproblems.Flu-likeSymptoms.BETASERONcancauseflu-likesymptomsincludingfeverchillstirednesssweatingmuscleacheswhenyourststarttouseit.Thesesymptomsmaydecreaseovertime.TakingmedicinesforfeverandpainreliefonthedaysyouareusingBETASERONmayhelpdecreasethesesymptoms.Seizures.SomepeoplehavehadseizureswhiletakingBETASERONincludingpeoplewhohaveneverhadseizuresbefore.ItisnotknowniftheseizureswererelatedtoMStoBETASERONortoacombinationofboth.IfyouhaveaseizureaftertakingBETASERONcallyourhealthcareproviderrightaway.BloodProblems.Youmayhaveadropinthelevelsofinfection-ghtingwhitebloodcellsredbloodcellsorcellsthathelpyouformbloodclots.Ifdropsinlevelsareseveretheycanlessenyourabilitytoghtinfectionsmakeyoufeeltiredorsluggishorcauseyoutobruiseorbleedeasily.RisktoPregnancyBETASERONcanharmyourunbornbaby.BETASERONmaycauseyoutoloseyourbabymiscarry.IfyoubecomepregnantwhiletakingBETASERONcallyourhealthcareproviderrightaway.YouandyourhealthcareprovidershoulddecideifyoushouldcontinuetotakeBETASERON.MostCommonSideEffectsThemostcommonsideeffectsofBETASERONincludelowwhitebloodcellcountincreasesinyourliverenzymesheadacheincreaseinyourmuscletensionpainrashproblemssleepingstomachpainweakness.ThesearenotallthepossiblesideeffectsofBETASERON.Tellyourhealthcareproviderifyouhaveanysideeffectthatbothersyouorthatdoesnotgoaway.Tellyourhealthcareprovideraboutallthemedicinesyoutakeandyourmedicalconditions.PleaseseebriefsummaryofMedicationGuideonthefollowingpage.YouareencouragedtoreportnegativesideeffectsofprescriptiondrugstotheFDA.Visitwww.fda.govmedwatchorcall1-800-FDA-1088.IMPORTANTSAFETYINFORMATIONcontinuedBAYERtheBayerCrossandBETASERONareregisteredtrademarksofBayer.2014BayerHealthCarePharmaceuticalsInc.WhippanyNJ07981Allrightsreserved.521-10-0003-13March2014VisitExploreBETASERON.comtodayVViitEEEoBBETTAAASEEROOmVisitExploreBETASERON.comtoday BriefSummaryofMedicationGuideBETASERONbay-ta-seer-oninterferonbeta-1bin-ter-feer-onbeta-one-beReadthisBriefSummaryoftheMedicationGuide.FormoreinformationreadthefullMedicationGuideandtalkwithyourhealthcareprovideraboutyourmedicalconditionoryourtreatment.WhatisthemostimportantinformationIshouldknowaboutBETASERONBETASERONcancauseserioussideeffectsincludingliverproblemsincludingliverfailure.Symptomsofliverproblemsmayincludeyellowingofyoureyesitchyskinfeelingverytiredu-likesymptomsnauseaorvomitingbruisingeasilyorbleedingproblems.YourhealthcareproviderwilldobloodteststocheckfortheseproblemswhileyoutakeBETASERON.seriousallergicreactions.SeriousallergicreactionscanhappenquicklyandmayhappenafteryourrstdoseofBETASERONorafteryouhavetakenBETASERONmanytimes.Symptomsmayincludedifcultybreathingorswallowingswellingofthemouthortonguerashitchingorskinbumpsdepressionorsuicidalthoughts.CallyourhealthcareproviderrightawayifyouhaveanyofthefollowingsymptomsespeciallyiftheyarenewworseorworryyouthoughtsaboutsuicideordyingneworworsedepressionneworworseanxietytroublesleepinginsomniaactingaggressivebeingangryorviolentactingondangerousimpulseshallucinationsotherunusualchangesinbehaviorormoodWhatisBETASERONBETASERONisaprescriptionmedicineusedtoreducethenumberofrelapsesinpeoplewithrelapsingformsofmultiplesclerosisMS.ThisincludespeoplewhohavehadtheirrstsymptomsofmultiplesclerosisandhaveanMRIconsistentwithmultiplesclerosis.BETASERONissimilartocertaininterferonproteinsthatareproducedinthebody.ItwillnotcureyourMSbutmaydecreasethenumberofare-upsofthedisease.ItisnotknownifBETASERONissafeandeffectiveinchildren.WhoshouldnottakeBETASERONDonottakeBETASERONifyouareallergictointerferonbeta-1btoanotherinterferonbetatohumanalbuminormannitol.SeetheendofthisleaetforacompletelistofingredientsinBETASERON.WhatshouldItellmyhealthcareproviderbeforetakingBETASERONBeforeyoutakeBETASERONtellyourhealthcareproviderifyouhaveorhavehaddepressionsinkingfeelingorsadnessanxietyfeelinguneasynervousorfearfulfornoreasonortroublesleepinghaveorhavehadliverproblemshaveorhavehadbloodproblemssuchasbleedingorbruisingeasilylowredbloodcellsanemiaorlowwhitebloodcellshaveorhavehadseizureshaveorhavehadheartproblemsarepregnantorplantobecomepregnant.BETASERONcanharmyourunbornbaby.BETASERONmaycauseyoutoloseyourbabymiscarry.IfyoubecomepregnantwhiletakingBETASERONcallyourhealthcareproviderrightaway.YouandyourhealthcareprovidershoulddecideifyoushouldcontinuetotakeBETASERON.arebreastfeedingorplantobreastfeed.ItisnotknownifBETASERONpassesintoyourbreastmilk.YouandyourhealthcareprovidershoulddecideifyouwilltakeBETASERONorbreastfeed.Youshouldnotdoboth.Tellyourhealthcareprovideraboutallthemedicinesyoutakeincludingprescriptionandnonprescriptionmedicinesvitaminsandherbalsupplements.Knowthemedicinesyoutake.Keepalistofthemtoshowyourhealthcareproviderandpharmacistwhenyougetanewmedicine.WhatarethepossiblesideeffectsofBETASERONBETASERONmaycauseserioussideeffects.CallyourhealthcareproviderrightawayifyouhaveanyoftheserioussideeffectsofBETASERONincludingSeeWhatisthemostimportantinformationIshouldknowaboutBETASERONheartproblems.BETASERONmayworsenheartproblemsincludingcongestiveheartfailure.Symptomsofheartproblemsmayincludeswollenanklesshortnessofbreathdecreasedabilitytoexercisefastheartbeattightnessinchestincreasedneedtourinateatnightnotbeingabletolayatinbed.injectionsiteproblems.Seriousskinreactionscanhappeninsomepeopleincludingareasofseveredamagetoskinandthetissuebelowtheskinnecrosis.ThesereactionscanhappenanywhereyouinjectBETASERON.Symptomsofinjectionsiteproblemsmayincludeswellingrednessorpainattheinjectionsiteuiddrainagefromtheinjectionsitebreaksinyourskinorblue-blackskindiscolorationItisimportantforyoutochangeyourinjectionsiteeachtimeyouinjectBETASERON.ThiswilllessenthechanceofyouhavingaseriousskinreactionatthesitewhereyouinjectBETASERON.AvoidinjectingBETASERONintoanareaofskinthatissorereddenedinfectedorhasotherproblems.u-likesymptoms.BETASERONcancauseu-likesymptomsincludingfeverchillstirednesssweatingmuscleacheswhenyourststarttouseit.Thesesymptomsmaydecreaseovertime.TakingmedicinesforfeverandpainreliefonthedaysyouareusingBETASERONmayhelpdecreasethesesymptoms.seizures.SomepeoplehavehadseizureswhiletakingBETASERONincludingpeoplewhohaveneverhadseizuresbefore.ItisnotknowniftheseizureswererelatedtotheirMStoBETASERONortoacombinationofboth.IfyouhaveaseizureaftertakingBETASERONcallyourhealthcareproviderrightaway.ThemostcommonsideeffectsofBETASERONincludelowwhitebloodcellcountincreasesinyourliverenzymesheadacheincreasesinyourmuscletensionpainrashproblemssleepingstomachpainweakness.Tellyourhealthcareproviderifyouhaveanysideeffectthatbothersyouorthatdoesnotgoaway.ThesearenotallthepossiblesideeffectsofBETASERON.Formoreinformationaskyourhealthcareproviderorpharmacist.Callyourdoctorformedicaladviceaboutsideeffects.YoumayreportsideeffectstoFDAat1-800-FDA-1088.KeepBETASERONandallmedicinesoutofthereachofchildren.GeneralinformationaboutthesafeandeffectiveuseofBETASERON.MedicinesaresometimesprescribedforpurposesotherthanthoselistedinaMedicationGuide.DonotuseBETASERONforaconditionforwhichitwasnotprescribed.DonotgiveBETASERONtootherpeopleeveniftheyhavethesamesymptomsthatyouhave.Itmayharmthem.WhataretheingredientsinBETASERONActiveingredientinterferonbeta-1bInactiveingredientsalbuminhumanmannitolDiluentcontainssodiumchloridesolution.ManufacturedforBayerHealthCarePharmaceuticalsInc.WhippanyNJ07981ManufacturedinGermanyU.S.LicenseNo.17782014BayerHealthCarePharmaceuticalsInc.Allrightsreserved.RevisionDateJAN20146800602BS521-154-0001-14interferonbeta-1bForinjection0.3mgpervialForsubcutaneousinjection MSFocusSummer201451ByJoanneFortunatoIfyourtabletorphoneisrunningslowlyorhasglitchestherearesomeverysimpletechniquestofixtheseissuesandpreventthemfromhappeninginthefuture.ThisarticlewilldescribehowtosavebatterypowerandcloserunningapplicationsofferresourcesforcurrentinformationandaddresstwomajoroperatingsystemsAppleandAndroidGoogle.ThisarticledoesnotaddressWindowsSurfacedevices.Ifyouneedinformationgotowww.microsoft.comsurfaceen-ussupportuserguides.Inadditiondesktopcomputerswillnotbedisussedasthereistoomuchinformationtoincludeforthescopeofthisarticle.LocationServicesThisapplicationissometimescalledGPS.ItwillreportyourlocationtovariousappssuchasMaps.Manytimeswhenyouinstallanewappitwillaskiftheappcanaccessyourcurrentlocation.Mostofthetimethiscanbechangedatalatertime.Yourlocationcanbereportedtocompaniesthatyoumaynotbeawarearetrackingyou.ForexampleAppleandGoogleoftencollectthisinformation.ToturnonofflocationservicesAppleiPadiPhoneSettingsPrivacyYoucanturnoffonlocationservicesingeneralorforspecificapplications.AndroidBecausetheAndroidoperatingsystemisusedondevicesfrommanydifferentmanufacturersturningonorofflocationservicesisveryspecifictoeachdevice.Usuallythisoptionislocatedinthesettings.Searchforyourspecificdeviceontheinternettodeterminehowthisfeatureworks.DisplayThedisplayisoneofthebiggerbatteryhogs.Thereareseveraldisplaycontrolsthatcanreducethebatterypowerused.Firstkeepthebrightnessatthelowestsettingyoucancomfortablyusethedevice.Secondlyinvertingthedisplaycansavebatterylife.Darkbackgroundwithlightwritingwillsavebatterypower.Plusitmakesiteasiertoreadinlowlight.Finallyputtingthedevicetosleepwhennotinuseisagreatbatterysaver.YouMaintenanceTipsforYourPhonesandTablets canchangetheamountoftimethedevicestaysonwhenidle.Amagneticcasewillautomaticallyputatabletinsleepmode.Magneticcasesarewidelyavailableandrangeinpricestartingfromabout10.Makesuretopurchaseacasespecificallyforyourtablet.TochangethedisplayAppleiPadiPhoneSettingsWallpaperBrightnessTurnoffautobrightnessandadjustthelevelforthelightinyourlocation.SettingsGeneralAccessibilityInvertColorsThiswillmakethebackgrounddarkandthetextlight.SettingsGeneralAuto-LockControlsidletime.AndroidSettingsDisplayYoucancontrolthebrightnessandidletime.InvertingcolorsisnoteasytosetuniversallyonanAndroid.Itisrecommendedthatyousetdisplaycolorsoneachindividualapplicationyouuse.GeneralFeaturesTurningoffthefollowingfeatureswhennotinusewillalsohelppreservebatterypowerWifibluetoothandvibration.Bluetoothallowsyoutoconnecttowirelessdevicessuchasheadphones.Manycarstodayhavebuiltinbluetooth.AppleiPadiPhoneSettingsWifiBluetoothDoNotDisturbTocontroleachofthesefeatures.AndroidSettingsWifiBluetoothTocontroleachofthesefeatures.BecausetheAndroidoperatingsystemisusedondevicesfrommanydifferentmanufacturersturningonoroffvibrationswillvarydependingonyourdevice.Searchforyourspecificdevicetodeterminehowthisfeatureworks.RunningApplicationsEachtimeyouopenanapplicationsuchase-mailorthecameraitwillstayopenuntilyoucloseit.Justreturningtothehomescreendoesnotcloseitbecausealmostalldeviceshaveamulti-taskingfeature.Multi-taskingallowsyoutoswitchbetweenopenapplications.Whenyouarenolongerusinganappli-cationclosingitwillsavebatterypowerandhelptomakeyourdeviceoperatefaster.AppleiPadiPhoneIOS7Pressthehomebuttononcetheroundbuttonatthebottomofyourdevicetoreturntothehomescreen.Pressittwicetoseerunningapplications.Tochooseanapplicationjustpressonit.Toendanapplicationpressandholdthenslidetheapplicationtothetopofthescreen.Whenitiscloseditwilldisappear.AndroidToseerunningapplicationspressontheicon.Allrunningapplicationswillbelistedwiththecorrespondingicon.Toswitchtoanapplicationpressonit.ToclosetheapplicationpressandholdituntilyougettwochoicesRemovefromlistandAppinfo.Releasetheappandchooseremovefromlist.Theapplicationiconwillslideoffthescreenandwillbeclosed.52MSFocusSummer2014 53MSFocusSummer2014JoanneFortunatoBSMAisaretiredcomputertechnologyteacherinTroyN.Y.Shehasamastersdegreeineducationandhasbeenteachingtechnologytoteachersandstudentsfor30years.Shehaspub-lishedseveralarticlesandbooksoneducationalcomputertechnologyincludingseveralarticleswiththeInternationalSocietyforTechnologyinEducationISTE.ShewasdiagnosedwithMSin2006andusestechnologytoaidincopingwiththemanydifficultiesthatMScanpresent.Sheisexcitedtosharethisinformationwithothersthatdealwiththesameandmanyotherissuesonadailybasis.FormoreinformationApplehttpwww.apple.comsupportAndroidAgaindependingonwhichmodeltabletyouhaveandwhatversionofAndroidyouareusingthebestplaceforinformationisthewebsiteofthemanufacturerofyourparticulardevice.LetusknowwhatyouthoughtofthisarticleEmailyourcommentstoeditormsfocus.orgormailtotheaddressonthebackcoverAttnMSFocusLettersColumn. 54MSFocusSummer2014MEEITSALLABOUTMotivatingEducatingEmpoweringMULTIPLESCLEROSISFOUNDATIONMEEITSALLABOUTMotivatingEducatingEmpoweringMULTIPLESCLEROSISFOUNDATIONMSAwarenessMonthinMarchisatoughacttofollowbutourenergeticMSFProgramServicesstaffkeptthemomentumgoingrightintoApril.MSUpdates2014wasthetopicofaneducationalprogrampresentedonApril2ndinConyersGa.SpeakerJenniferMcDonaldMSFAPRNNP-CofSoutheasternNeurologyNewtonMedicalCenterdiscussedthelatestresearchnewstreatmentoptionsandhowtolivewellwithMS.AssummerapproachedMSFprogramsturneduptheheatwithtwoprogramsonHotTopicsinMS.ThefirstpresentedbyneurologistMatthewJ.BakerMDoccurredonJune10thinNaplesFla.OnJune17ththewavecontinuedtoSt.PetersburgFla.wherespeakerMichaelFranklinMDofSt.AnthonysNeurologicalGroupgaveapresentationtoaverycoolaudienceofpeoplewithMSandtheirsupporters.EducationalProgramsRidetheWaveMSFLeadersTakePartinNationalEventTheMultipleSclerosisFoundationMSFhadapresenceatthe2014AnnualMeetingoftheConsortiumofMultipleSclerosisCentersCMSCinDallasTexasinMay.TheCMSCisthelargestnationalMSmeetingwhichbringstogetherneurologistsnursesphysicaltherapistandotherhealthcareprofessionalsandorganizationswhoprovideservicestothosewithMSthroughouttheU.S.SeveralmembersofMSFsMedicalAdvisoryCommitteewereinattendanceincludingDavidJonesMDandAnnetteOkaiMD.PicturedtopleftMSFCo-ExecutiveDirectorsAlanSegaloffandJulesKuperberg.ToprightDerrickLeeMSFAssociateDirectorofQualityofLifeProgramsandServicesandNatalieBlakeDirectorofProgramServices.BottomleftDavidJonesMDRightAnnetteOkaiMD 55MSFocusSummer2014SharingCaringANationalMSEducationandAwarenessMonthEventatSouthShoreNeurologicAssociatesinNewYorkForfourfulldaysduringtheweekofMarch24ththeIslipandPatchogueofficesofSouthShoreNeurologicAssociatesSSNAwww.southshoreneurologic.comhostedShareCareamultiplesclerosisawarenesseventwhichofferedpatientsandguestsfreeMSeducationalinformationMSFinformationandgiveawaysaswellasnumerousrafflesfeaturingawesomeproductsandservicesdonatedbymanylocalbusinesses.PrizesincludedacustomwinegiftbasketspapackagesportsbasketcompletewithMetsgameticketsaJonesTwinSisterSnowboardandmore.Plusabounteous5050raffleSpecialthankstoeventcoordinatorSusanStrejlauandvolunteerLindaGovernaleforbringinginmanyenthusiasticsupportersandin-kinddonorsfromthebusinesscommunity.Theeye-catchingraffleitemsattractedlotsofattentionwhichalsodrewpatientsandpassersbytotheMSinformationtable.AlongwithSusanandLindathestaffatSSNAwentaboveandbeyondhelpingwiththedisplayslendingtheirtimeandresourcesanddonatinggenerously.OurappreciationalsogoesouttoJamesBoydofMedtronicInc.forhisparticipationandsubstantialdonationtotheMSF.BytheweeksendtheeventwassosuccessfulraisingMSawarenessand2372fortheMSFthatSouthShoreNeurologicispromisingtodoitagainnextyearThiseventwouldnthavebeenpossiblewithoutSSNAChiefAdministrationOfficerCharlesBurkeExecutiveAssistantStephanieWarnFinancialAssistanceManagerGraceDruiettSSNAsMSNursesandInfusionTeamsandSharingCaringeventvolunteersAnthonyLongoRyanKaneandLaurenCorrado.TheirdedicationtotheMSFcauseaswellastheirphilanthropyandkindnessinassistingSusanandLindaissincerelyappreciatedbyallofushereattheFoundation.Seeyouin2015ALighttoRememberOnMarch14ththe110TowerlitupthedowntownFortLauderdaleskywithMSFssignaturecolorstosupportNationalMSEducationandAwarenessMonth.Specialthankstothe110TowerforhelpingusspreadawarenessandformakinghopeforMSpatientsseemthatmuchbrighterByHildyBerger 56MSFocusSummer2014VolunteerSpecialEventsMarch7thStrutforMSAwarenessFashionShowBenefitBrooklynN.Y.ThischicaffairwhichtookplaceatBrooklynsfamedWoodlandNYCrestaurantspotlighteddesignsfrombebeHMandtalentedlocalandinternationaldesignersincludingLAmourAmeerpicturedherewithorganizerandfashiondevoteeNadiaJohnson.HighlightsofthisfabulouseveningoffunandMSawarenessincludedanawardpresentationfromBrooklynBoroughPresidentEricAdamsandcoveragebyFusionMagazineandPix11Televisionslocalnews.BigthankstoNadiawhosetrend-settingtalentraised700fortheMSFMarch8thSingSwing2014FundraiserfortheMSFAuburnHillsMich.MusicandrevelrywereonorderattheannualSingSwingMSFfundraiseratHoopsSportsSpiritsinAuburnHills.ThiseventincludedkaraokedancingrefreshmentsdrinkspecialsrafflesandmorecheckoutthatcakeThankyouJanetJimenezfororganizingthislivelyfundraiserwhichraised950fortheMSFMarch15thRocknRollUSAMarathon2014WashingtonDCTheRocknRollUSAMarathonistheWorldsLargestRunningSeriescombiningafullhalfmarathonwithalivemusicfestival.ThisyearDharmHallraninhonorofhisbrotherScottakaScootwholosthisbattlewithMS10yearsago.DharmhighlightedMSawarenessinthenationscapitalandelse-wheregarneringsup-portandraisingfundsfortheMSFfromfamilyandfriendsnearandfar.RockonDharmMarch22ndEveryStepCountsSpaghettiDinnerCincinnatiOhioMorethanjustpastaandpotluckthisSpaghettiDinnerfundraiserincludedinspirationalspeakerslivemusicMSinformationyouthparticipationasaTeensCanSucceedeventandofcoursegreateatsOurappreciationgoesouttoeventorganizerKarenPaynewhodishedupagreatpartywithapurposeforMSFsannualMarchMSAwarenesscampaign.April5thBenchPressforMSAwarenessSprucePineN.C.MSstoodforMIGHTYSTRONGatthisfundraiserhostedbyFitnessExpressgym.ThecompetitiveeventMaleFemaleWeightClasseswithprizesforthewinnerswasorganizedbyhealthcareandfitnessproDanicaHuskinsinhonorofher 57MSFocusSummer2014HildyBergeristheMSFsFundDevelopmentCoordinator.IfyouareinterestedinplanningafundraisingeventorwouldlikemoreinformationcontacttheMSFFundDevelopmentDepartmentat800-225-6495orsendanemailtohildymsfocus.org.bravefriendCourtneywhohasbeenbattlingdebilitatingMSsymptomssince2012.ThankstoDanicaBenRaymerFitnessExpressandallthesupportersandweightlifterswhosedonationsandentryfeesstrengthenedMSFprogramsbyaveryimpressive955April9thChichesterHSTri-MMusicHonorSocietyBenefitConcertBoothwynPa.ShowcasingthejointmusicdepartmentsofChichesterandGarnetValleyHighSchoolsthisbenefitconcertfeaturedtwohoursofsoloactsduetssmallensemblesandlargechoirsperformingHereComestheSunTheBeatlesSaySomethingAGreatBigWorldSeasonsofLovefromRentandmuchmore.TheeventstartedwithaninformationalvideoaboutMSanditslifealteringeffectsandlatervolunteerscollecteddonationsandfundsforgiftbasketsand5050raffleswithallproceedsgoingtotheFoundationtothetuneof925SpecialthankstostudentTheresaMignognaandmusicteacherHeatherSpindelwhoorganizedthistrulyinspirationalfundraiser.April12thAppalachianStateUniversityBaseballBenefitforMSFBooneNCFollowingawintermarkedbybittercoldandabarrageofsnowstormsspringtimefinallyarrivedandwithittherescheduledAppStateBaseballGamebenefitfortheMSFStudentorganizerKendallRosswasbookedtogoonlivelocalTVMTN18whenshegotwordthegamewascalledoffduetoinclementweather.DespitetheunfortunatenewsKendallkepthercomposureanddidagreatjobpromotingMSawarenessandthebaseballfundraiserwhichwasrescheduledfor2weekslater.AppStatesMountaineerstriumphedoverrivalteamTheCitadelandKendallcollected400fromthestandsawinningdayforAppalachianStateUniversityandtheMSFtobesureMSFConnectAttentionCorporationsEverwonderhowyourbusinesscangetinvolvedinphilanthropyTheanswerisMSFConnectanewprogramofferedbytheFoundationthatwelcomesopportunitiestodevelopnewcorporatepartnerships.WehaveanumberofwaysyourbusinesscangetinvolvedLetsconnectandshareideasondevelopinganeffectivestrategicalliancetailoredforyouandtheMSFTobenefitfromthesepartnershipopportunitiespleasecontacttheFundDevelopmentDepartmentat800-225-6495.FormoreinformationabouttheseeventscontactNathalieSloaneat954.776.6805ornsloanemsfocus.orgMediaInquiriesAdrienneMazzoneTransMediaGroupat561.750.9800 MSFocusSummer201458DespiteMStoSpiteMSOnecouplefacingthechallengesoflifeandMultipleSclerosisWrittenByDanandJenniferDigmannDanandJenniferDigmannarentyouraveragemarriedcouple.AsyoulearnattheoutsetoftheircharmingmemoirbothDanandJenniferhaveMSandJenniferisconfinedtoawheelchair.HoweverthatisntwhatmakestheDigmannsstandout.Throughoutthepagesoftheirstorywhatshinesthroughistheirunwaveringsupportofoneanother.AdaptedfromblogpostsandalternatingbetweenJenniferspointofviewandDansDespiteMStoSpiteMSprovidesanunvarnishedglimpseintotheDigmannsliveswiththeillness.ThereadersharesJennifersstrugglesasshepursueshermastersdegreedespiteMSandthechallengesofdecreasingmobilityandDanseffortstospiteMSbycontinuingtorunandstayasactiveaspossible.Withunendingpositivitytheyconfronttheobstaclestheyfaceandfindawayforwardtogether.FromDansexperienceinlearningtogivehimselfinjectionstoJennifersjoyatfindingahotelwitharoll-inshowerreadersindifferentstagesofMSwillfindsomethingrelatableintheDigmannsrecollections.CarepartnerstoowillappreciateDansreflectionsonhisroleascaregivertoJenniferandthelovethatovercomesallofMSschallenges.DespitetheroleMSplaysintheDigmannstaletheirsisalovestorythroughandthrough.AMindfulness-BasedStressReductionWorkbookByBobStahlPhDandElishaGoldsteinPhDAuthorsBobStahlPhDandElishaGoldsteinPhDbegintheirbookwiththisdedicationToallthosewhohavedaredtolookintotheirfearsandfindtheirhearts.TherecouldbenobettersummaryofthegoalofAMindfulness-BasedStressReductionWorkbook.ThroughaseriesoflessonsexercisesmeditationsandreflectionstheworkbookaimstohelpyoufindthesourceofCatchupwiththeDigmannsandfindoutmoreabouttheirbookonMSFocusRadio.org.TuneintoourexclusiveinterviewAugust15thatnoonEST. MSFocusSummer201459ToborrowthisandothertitlescalltheMSFLendingLibraryat1-888-MSFocus673-6287orvisitwww.msfocus.org.ClickonLendingLibraryundertheProgramsandActivitiesheading.thefearsandanxietiesthatcauseyoustressandtoteachyoutoacceptandmovepastthem.Throughthepracticeofmindfulnessdefinedasbeingfullyawareofwhatishappeninginthepresentmomentwithoutjudgmentthebookstrivestoteachindividualstoprocessemotionstocompletionwithoutresortingtoavoidanceorself-destructivebehaviorslikecomfort-eatingornegativeself-talk.TheworkbookalsoincludesillustrationsofyogaposesandaCDof21guidedmeditationsbothdesignedtohelpyoudeepenyourmindfulnesspractice.Itsalsopepperedwithpersonalaccountsfromtheauthorsthathelptoillustratethemeaningofnewconcepts.ThebookspecificallyaddressesmindfulnessasatoolforcopingwithchronicpainasymptomwithwhichthosewithMSmaybealltoofamiliar.Forthosenewtothepracticeofmindfulnessthisthoroughstep-by-stepapproachwillleadthemthroughtheprocesshopefullytotheultimategoalofreducinganxietypainandstress. 60MSFocusSummer2014Theever-changinglandscapeoffederalregulationsmedicaltechnologyandinsurancecoveragecanmakeonesheadspin.Thiscolumnspotlightsgovernmentresourcesavailabletoqualifyingpeoplewhohavemultiplesclerosisandotherchronicillnesses.TheTickettoWorkProgramSocialSecuritysTickettoWorkprogramsupportsthecareerdevelopmentofindividualswithdisabilitieswhowanttoworkandprogresstowardfinancialindependence.TheTicketprogramisagoodfitforpeoplewhowanttoimprovetheirearningpotentialandwhoarecommittedtolong-termsuccessintheworkforce.TickettoWorkoffersbeneficiarieswithdisabilitiesaccesstomeaningfulemploymentwiththeassistanceofemploymentserviceproviders.Participantsintheprogramareallowedtokeeptheirbenefitswhileexploringemploymentopportunitiesreceivingvocationalrehabilitationandgainingworkexperience.YourcashbenefitsMedicaidorMedicarecancontinuethroughoutyourtransitiontoworkwithprotectionsinplacetohelpyoureturntobenefitsifyoufindyouareunabletocontinueworkingduetoyourdisability.WhyTickettoWorkIfyoureceivedisabilitybenefitsfromSocialSecuritythenyouknowthatgettingthosebenefitstooktimeenergyandpatience.IndeterminingyoureligibilityfordisabilitybenefitsSocialSecurityfoundthatyoucouldnotearnenoughmoneytosupportyourself.Howeverwiththerightopportunitiesandsupportmanypeoplecanearnahigherstandardoflivingbygoingtoworkandleavingthebenefitrolls.Earningalivingthroughemploymentisnotsomethingeveryonecandobutitmayberightforyou.Manyfindthattherewardsfaroutweightherisks.YoubecomeeligibletoparticipateintheTickettoWorkprogramwhenyoustartreceivingSocialSecurityDisabilityInsuranceSSDIandorSupplementalSecurityIncomeSSIbenefits.TheseproviderscalledEmploymentNetworksENsofferspecializedservicessuchascareercounselingjobplacementandtraining.YoumayreceiveservicesfromyourlocalvocationalrehabilitationagencyaswellasongoingservicesfromanEN.WhoQualifiesEveryoneage18-64whoreceivesSSDIandorSSIbenefitsiseligibletoparticipate.ParticipationintheTicketprogramisfreeandvoluntaryandyoureligibilitywillbeverifiedbyyourserviceprovider.YoucanalsofindoutaboutyoureligibilitystatusbycallingtheTickettoWorkHelpLineat1-866-968-7842V866-833-2967TTY. MSFocusSummer201461YoucangetthehelpyouneedfromtwotypesofprovidersanEmploymentNetworkoryourstatesVocationalRehabilitationagency.AnEmploymentNetworkisundercontractwithSocialSecuritytoprovidefreeservicestobeneficiariesundertheTicketprogram.IfyouandanENagreetoworktogeth-eryouwilljointlydevelopanIndividualWorkPlanthatisjustrightforyou.YoucanalsocontactyourstateVocationalRehabilitationagencywhowillworkwithyoutodevelopanindividualplantohelpyougetajob.Youarefreetospeakwithasmanyserviceprovidersasyoulikeitisyourchoicetodecidewithwhichprovideryouwishtowork.OnceyouhavedecidedwhatserviceproviderisrightforyoulearnmoreabouthowyoucanfindsatisfactionintheTickettoWorkprogram.TheTickettoWorkwebsitecanbefoundathttpchoosework.netmycall.WhoCanHelpMeGotoWorkTHEONLYBODY-CORECOOLINGSYSTEMDESIGNEDSPECIFICALLYFORMSPATIENTSSTACOOLUNDERVEST-Themostlight-weightcomfortablebodycoolingsystemavailable.TheStaCoolUnderVestuseshigh-qualitydurablematerialsandfoureasilyreplaceableThermoPakstwofrontandtwobacktocoolthebodycorecomfortably.EachlightweightvestoffersuptothreehoursofcoolingperThermoPaksetandasparesetforachangeoutisincludedfortotalofeightThermoPakspervest.SeewhatexistingcustomershavetosayIhaverecentlytriedthevestontwodifferentoccasions.Itworkedgreat.InoticedamajordifferenceinthewayIfeltwhilewearingit.Thevesttrulyfunctionsasadvertised.ThankyouforprovidingsuchausefulproductforusebypeoplelivingwithMultipleSclerosis.StephenSmithFormoreinformationvisituson-lineatstacoolvest.comorcalltollfree1-866-782-2665 62MSFocusSummer2014TipsforBetterLivingwithMSByGlennSparrowOneofmyworkmatesrecentlyhadbrainsurgerytoremoveatumorandisstrugglingwithcomingbacktowork.IcanrelateIhavehadMSforfouryearsandfatigueismyprimaryproblem.SoIhadachatwithheraboutmyMSandsentherthefollowinglistofthingsthathavehelpedme.HopefullyIcanhelpothersaswellbysharingthesetips.DontForgettoEatThehumanbodyrequiresregularfeedings.Ahealthybreakfastiscriticalandprovidesyouwithenergythroughoutthewholeday.Ialsofindthatenjoyinghealthysnacksduringthedayhelpsgenerateenergy.AlsowhenIamatworkIusemysnacktimesasmicrobreakstorechargeabit.Drinkplentyoffreshwateraswell.Ithelpstocleansethebody.Giveyourselfanenergyboostbyavoidingthequicksugaryfix.Itsfalseenergyandinthelongtermyouwillfeelworse.AstemptingastheymaybeavoidenergydrinkssuchasRedBull.Thesedrinksgiveyouaquickfive-minuteboostbutwillleaveyoudrainedforalongtimeafterwards.SleepSleepSleepAnothernobrainersotospeakisgettinglotsofsleepassleepingiscriticalforbrainhealth.Thereareanumberofsolutionswhensleepisaproblem.ForexampleIhavefoundbreathingexerciseshelpmesometimes.WhenImonstrongdosesofsteroidsmydoctorprescribessleepingpills.IhateusingthembutIknowIhaveto.Ifyouarehavingissueswithsleeptalkwithyourdoctor.KnowYourLimitsYourlimitsmaychangefromdaytodaysoassesseachdaywhatyourlimitsare.Thisisprobablythehardestthingtodo.Iforonestrugglewithitoften.Thencomesthehardpartstickingtoyourlimits.ImnotgoodatthisandamalwaystryingtopushmyselftodowhatIusedtodo.IfindthatIdonthavetheenergyIoncehad.MSisincrediblyfrustratinglikethat.BreakItDownTherewillbethingsthatyoucandoandotherthingsthatyoucannotdo.Thedishesmightneedwashingthelawnmightneedmowingthelaundry MSFocusSummer201463mightneedfoldingandthecatmightneedpetting.Buttrynottofeelover-whelmed.Breakeachindividualtaskdownanddothemwhenyoucan.Butdontforgettopetthecatoritwillpooinyourslippers.RecognizeYourSignsYourbodywilldisplaycertainsignswhenyouhaveoverdoneitorareapproachingyourlimit.ThebiggestsigntellingmeIhaveoverdoneitiswhenIgetveryangryveryquickly.Ialsogetvaguedizzyandmylegsfeelliketheyarewrappedinconcrete.Howeveryoursignsmaybecompletelydifferent.TheOtherHorribleEWordExercise.Imnottalkingaboutrunningtillyoupukeorendingupbuiltlikeabodybuilder.Iamtalkingaboutsoftsimpleandmanageableexercise.Itmightonlybeafive-minutewalkonthefirstdaybutslowandgradualincreasescoupledwithrestsarehugelybeneficial.Somethingassimpleas10minutesofgardeningcanmakeahugedifference.TurnYourBrainOffIfindthattherearetimesduringthedaywhenIneedtoturnmybrainoffandjustsitstillforafewminutes.IamluckyIcandothatathomeintheeveningwhilesittingonmydeckandlisteningtothebirds.TheWitchingHourMywitchinghourisfrom300p.m.tillaround530p.m.BetweenthistimeframeeachdayIfeellikecompletecrapsoIavoidschedulinganythingtoomentallytaxingduringthatperiod.Ialsotrytoliedownfor10minuteswhenIgethomefromwork.Learnwhenyoufeelthemosttiredandworkwithit.DontBeatYourselfUpHakunaMatata.OnthedayswhenIgetreallyfrustratedbecauseIcannotdoeverythingIwanttodoIremindmyselfthatmyhealthismostimportant.IoftenaskmyselfwhenstrugglingwithsomethingIsitreallyimportantChocolateandOtherRewardsRewardyourself.Ifyouhavesetagoalandachieveditbeproudofthataccomplishmentandrewardyourself.Nooneelsewillevertrulyknowhowmuchofastruggleitmayhavebeenforyou.TalkAboutItItiscriticalthatyouletthoseclosetoyouknowwhatisgoingon.Theycanhelpyouinawaythatnooneelsecan.AboveallelserememberItsnotyourfaultyouvegotMSGlennSparrowhashadsomemajorchallengesoverthelastfouryears.HeisahappilymarriedfatherofoneandlivesinKirweeNewZealand.HavingMSforjustoverfouryearsworkingfulltimeandbeingactivelyinvolvedwithhislocalcommunityisaneverydaychallenge.LikethousandsofothersGlennstrugglesdailybutstillenjoystimewithfamilyfriendsandbeinginvolvedwithOriginalScriptsTheatreSchool. MSFocusSummer201464Plant-BasedDietMayReduceMSFatiguePeoplewithmultiplesclerosiswhoforoneyearfollowedaplant-baseddietverylowinsaturatedfathadmuchlessMS-relatedfatigueattheendofthatyearandsignificantlylessfatiguethanacontrolgroupofpeoplewithMSwhodidntfollowthedietaccordingtoanOregonHealthScienceUniversitystudypresentedattheAmericanAcademyofNeurologysAnnualMeetinginPhiladelphiaPa.Thestudywasthefirstrandomized-controlledtrialtoexaminethepotentialbenefitsofthelow-fatdietonthemanagementofMS.ThestudyfoundnosignificantdifferencesbetweenthetwogroupsinbrainlesionsdetectedonMRIbrainscansoronothermeasuresofMS.Butwhilethenumberoftrialparticipantswasrelativelysmallstudyleadersbelievethesignificantlyimprovedfatiguesymptomsmeritedfurtherandlargerstudiesofthediet.Fatiguecanbeadebilitatingproblemformanypeoplelivingwithrelapsing-remittingMSsaidVijayshreeYadavMDanassociateprofessorofneurologyintheOHSUSchoolofMedicineandclinicalmedicaldirectoroftheOHSUMultipleSclerosisCenter.SothisstudysresultsshowingsomenotableimprovementinfatigueforpeoplewhofollowthisdietareahopefulhintofsomethingthatcouldhelpmanypeoplewithMS.ThestudyinvestigatedtheeffectsoffollowingadietcalledtheMcDougallDietdevisedbyJohnMcDougallMD.ThedietispartlybasedonanMS-fightingdietdevelopedinthe1940sand1950sbythelateRoySwankMDaformerheadofthedivisionofneurologyatOHSU.TheMcDougalldietverylowinsaturatedfatfocusesoneatingstarchesfruitsandvegetablesanddoesnotincludemeatfishordairyproducts.ThestudyfoundnodifferencebetweenthedietgroupandthecontrolgroupinthenumberofMS-causedbrainlesionsdetectedontheMRIscans.Italsofoundnodifferencebetweenthetwogroupsinrelapserateorlevelofdisabilitycausedbythedisease.Peoplewhofollowedthedietdidlosesignificantlymoreweightthanthecontrolgroupandhadsignificantlylowercholesterollevels.Peoplewhofollowedthedietalsohadhigherscoresonaquestionnairethatmeasuredtheirqualityoflifeandoverallmood.ThestudyssamplesizewasrelativelyMSNEWSandWhatItMeanstoYouEditorsNoteDr.Throwerscommentarywillresumenextissue. 65MSFocusSummer2014small.Fifty-threepeoplecompletedthestudywith27inthecontrolgroupand22peopleinthedietgroupwhocompliedwiththedietsrestrictions.Thisstudyshowedthelow-fatdietmightoffersomepromisinghelpwiththefatiguethatoftencomeswithMSsaidDennisBourdetteMDFAANchairofOHSUsDepartmentofNeurologydirectorofOHSUsMSCenterandastudyco-author.ButfurtherstudyisneededhopefullywithalargertrialwherewecanmorecloselylookathowthedietmighthelpfatigueandpossiblyaffectothersymptomsofMS.BrainDiscoveryMayExplainWhyMoreWomenGetMSAnimageoftissuefromafemalebrainaffectedbymultiplesclerosisshowsthatthebrainhasmuchhigherlevelsofabloodvesselreceptorthanamalebrainaffectedbyMS.ThedifferencecouldhelpexplainwhysomanymorewomengetMSresearchersatWashingtonUniversitySchoolofMedicineinSt.Louisreport.InrecentyearsthediagnosisofMShasincreasedmorerapidlyamongwomenwhogetthedisordernearlyfourtimesmorethanmen.ThereasonsareunclearbutthenewstudyisthefirsttoassociateasexdifferenceinthebrainwithMS.ThefindingsappearMay8inTheJournalofClinicalInvestigation.StudyingmiceandpeopletheresearchersfoundthatfemalessusceptibletoMSproducehigherlevelsofabloodvesselreceptorproteinS1PR2thanmalesandthattheproteinispresentatevenhigherlevelsinthebrainareasthatMStypicallydamages.AninvestigationalMSdrugcurrentlyinclinicaltrialsblocksotherreceptorsinthesameproteinfamilybutdoesnotaffectS1PR2.KleinrecommendedthatresearchersworktodevelopadrugthatdisablesS1PR2.HighCholesterolMaySpeedMSProgressionHighcholesterolcouldbeatleastpartiallytoblameforhasteningdiseaseprogressioninpeoplewithMSaccordingarecentstudyinAustralia.FortheirexperimentscientistsatMenziesResearchInstituteTasmaniaidentified141patientswhowerediagnosedwithMSandfollowedtheirprogressfrom2002to2005.Theirbloodwasevaluatedatthestartofthestudyandthenagaineverysixmonths.TheExpandedDisabilityStatusScaleEDSStestwasusedtodetermineeachpatientslevelofdisability.TheEDSSmeasureseverythingfromreflexestobowelandbladderfunctiontotheabilitytowalk.TheresearchersfoundthatpatientswithhigherlevelsofcertainlipidsknownasbadfatsalsoscoredhigherontheEDSSmeaningthattheyweremoredisabled.Overthecourseofseveralyearstheynotedthatthesesamepatientsprogressedfasterintheirdisease.ButcouldthediseaseprogressionactuallybecausinganincreaseinbadfatlevelsWecouldnotfindevidencethatthiswastheresultofreversecausalitysaidvanderMeithatthosewhoprogressfasterhavelessphysicalactivityincreasetheirweightandasaresulthavehigherlipidlevelsbutwecannotrulethisout. 66MSFocusSummer2014Q.Q.WhatshouldIdobeforeIgetpregnantifIhavemultiplesclerosisA.A.IfyouhavemultiplesclerosisandplantogetpregnantyoushouldVisityourneurologistIfyouareonadisease-modifyingdrugyouwillneedtotalktoyourneurologistaboutwhentostoptakingyourmedicationaswellasyourplansfortreatmentafterchild-birth.Nodisease-modifyingdrugisapprovedforuseduringpregnancy.Dependingonwhichmedicationyoutakeyoumayneedtostopreceivinginjectionsorinfusionsseveralmonthsbeforegettingpregnant.Itisimportanttotellyourdoctoraboutallthedrugsthatyouaretaking.Whilesomearesafeforyourbabyothersmightneedtobesubstitutedwhileyouarepregnantorbreastfeeding.FindtherightobstetricianOBBeginyoursearchforanOBassoonaspossible.YourOBandyourneurologistmayhavetoconsultwithoneanotherparticularlyifyouneedtreatmentforMSduringyourpregnancy.MakesureyoualsomeetandarecomfortablewithanypartnersyourOBmighthaveandlearnwhichphysicianisoncalltodeliverbabies.ItisdifficulttopredictexactlywhenyouwillgointolaborandhavingMSisnotinitselfareasontohaveacaesareansection.LearnwhattoeatNutritionisacomplicatedareaofpregnancyrequiringyoutobalanceyourneedswiththoseofyourgrowingbaby.Apregnantwomanneedsironfortheredcellsinherincreasedbloodsupplyandherfetusneedsironformakinghemoglobin.Calciumplaysmanyimportantrolesinthebodybutthemainreasonforeatingmorecalcium-richfoodsduringpregnancyistoprovideenoughofthemineralforfetaldevelopmentofteethandbones.Beawarethatevensomevitaminsandmineralswillbeoff-limits.Q.Q.HowcanIusehypnosistomanagepaincausedbymultiplesclerosisA.A.RecentresearchhasshownthathypnosisbenefitsindividualswithMSandchronicpain.Likerelaxationhypnosisisawaytoalterthepainexperienceusingthepowerofthemind.Althoughtheeffectsofhypnosisarenotfullyunderstooditisthoughtthatpeoplewhorespondtohypnosisexperiencechangesinregionsoftheirbraininvolvedinpainprocessing.ThisQuestionsandAnswerscolumnfeaturesquestionsthathavebeenansweredbytheMSFforSharecareacompanydedicatedtoprovidingthebesthealthandwellnessinformationonline.TheMSFhaspartneredwithSharecaretohelpspreadvitalinformationaboutthediseasetotheglobalMScommunity.VisittheMSFspageonSharecare.comathttpwww.sharecare.comgroupmultiple-sclerosis-foundation. Summer2014MSFocus67Hypnosismayteachpeopletocalmtheirbrainhoweveritdoesnotinvolvethepersonlosingcontrolofhisorheractions.Hypnosistypicallybeginswithaninductionthathelpsthepersonfocusattentiononasingleobjectimageorsensation.Forexampleyoumaybeaskedtotakeadeepbreathandfocusonit.Asyouenterahypnoticstateyoubecomemorefocusedonyourinternalstateandlessfocusedonyoursurroundings.Inthedeeperstateofrelaxationthatfollowsyouaregivensuggestionsforpositivechangessuchasincreasedfeelingsofcomfortandawarenessofpleasantsensations.Itmayalsobesuggestedthatyourpainwilldecreaseorgoawayevenafterthehypnosisisdone.Youarethenreorientedtobeawareendingthesession.Thisproceduremaylastfromafewminutestomuchlongerdependingonthegoals.Althoughyoucanlearnself-hypnosisonyourownpain-controltrainingfromanexperiencedhypnosisprofessionalisoftenmoreeffective.Studieshaveshownthatusuallyfourto10sessionsaresufficientforreapingitsbenefitsincludingpainreductionandincreasesinpositivemoodrelaxationasenseofcontrolandoverallwell-being.Tomaintainthesebenefitshypnosisshouldbepracticedregularly.Q.Q.HowdodoctorsdecidehowtotreatapersonwithmultiplesclerosisA.A.Choosingatherapyformultiplesclerosisisoftenguidedbyexperiencealthoughanappropriateriskbenefitanalysisshouldbeundertakenandsubsequentlytheresponsetotherapyisassessed.Peopleoftenhavebreakthroughdiseaseonthechosenagentnecessitatingatreatmentchange.Infacteverymedicationswitchtrialthathaseverbeendonehasbeenpositive.MSclinicianssometimesinitiallychooseasecond-linetherapybasedoncertainindividualscharacteristicsincludingseveremultifocalattacklackofrecoveryafteranearlyrelapseorahighburdenofdiseaseonmagneticresonanceimagingMRIatdiagnosis.Thereissomedatatosuggestthatprospectivebiomarkerswillallowdoctorstomakebettertreatmentdecisionsbymoreaccuratelypredictingtheappropriatetherapyfortheappropriatepersonattheappropriatetime.Oneofthebigquestionsiswhetherananti-inflammatoryoraneuroprotectiveagentorbothismoreappropriate.Oneoftheotherbigpendingresearchquestionsiswhetheracombinationoftwosaferdrugswilloffertheefficacyofoneofthemorepowerfulbutrelativelylesssafedrugs.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-