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2014ApplicationsCoolingProgramMSFAmbassadorBrighterTomorrowGrantRecipients PublicationsManagerTerrySchenkerEditorialCommitteeKaseyMinnisGayFalkowskiBrieaCuringtonNatalieBlakeJayHassContributingWritersMarissaA.BarreraMSMPhilMSCSCCC-SLPHildyBergerErikaBolinDanielKantorM.D.TimCarrJoanneFortunatoEllenWhippleGuthriePharm.D.MichaelaA.MedvedMATSSLDCCC-SLPSusanB.TrachmanTALKBACKTALKBACKWeWelcomeTopicSuggestionsForFutureIssues.Yourcommentsabouteachissueareimportanttous.Emailcommentstoeditormsfocus.orgorwritetoEditorMSFocus6520N.AndrewsAvenueFortLauderdaleFL33309 MSFocusispublishedquarterlyinenlargedtypeforthebenefitofourreaders.Ifyouwouldpreferanaudioversionpleasecall888-MSFOCUS.Backissuesareavailableonlineatwww.msfocus.org.MSFocusisafreepublicationforindividualswithMStheirfamiliesandothersinterestedinMS.StatementofPurposeThepurposeoftheMultipleSclerosisFoundationspublicationsistoempowerthoseaffectedbyMSwiththeinformationnecessarytomakethemostcompleteandeducateddecisionsconcerningtheirhealthcare.Wedonotadvocateorendorseanyspecifictreatmentshealingmodalitiesorpractitioners.Thematerialpresentedinthispublicationisforinformationalpurposesonly.Forspecificadviceconsultahealthcareprofessional.MSFdoesbelievethateachpersonhastherighttochoosethetreatmentstheyfeelarebestandthereforeactsasasourceofinformationprovidingreferralstolocalresourcesandpartnershipinproblemsolving.MSTech10146MSFOnTheRoad48RegionalEvents49FromtheLibrary53SupportGroupSpotlight54MenMS56MSNews58QuestionsAnswers61FEATURESAccess2014GettingtheHealthcareYouNeed6TheArtofMSTreatment19ParticipateandAdvocateMoversShakersNewsletterKeepsYouInvolvedwithStudiesandSurveys22MSFBrighterTomorrowGrantProgramMakesLivesBrighter27Dysphagia101TipsforSafeSwallowing32NationalMultipleSclerosisEducationandAwarenessMonth37CONTINUINGTOPICSAsWeSeeIt4MSFMailbox5PSWhatsNew31FacebookFeedback362014MSFAmbassadorApplication39CoolingApplication41UpdatesbythePharmacist42UncleSamsHelpingHand44 4MSFocusWinter2014ProceedWithCautionCriticalIssuesAheadTheAffordableCareActACAhaseliminatedtheexclusionforpre-existingconditionsincludingMSthusprovidingopportunitiestoobtainvitalhealthcoverage.WhiletheACAisthelawofthelandthreepotentialobstaclesloomaheadontheroadtogoodhealthcare.Theissuesare1Withpatentstimedtograduallyexpireontheearliergroupofdisease-modifyingdrugsvariousmanufacturersareapplyingtoproduceandmarketcopiesofthename-brandvariety.Weareallinfavoroflowerprescriptioncoststothepatient.Howeverthisisnotassimpleasachemically-basedmedicationnowbeingofferedgenerically.Forexampletheinterferon-basedmedicationsarebiologicallyengineeredandassuchthereisapossibilityofsubtledifferencesbetweentheoriginalandthecopy.ForthisreasoncertainEuropeancountriesrequiretrialsasifanewmedicationwerebeingassessedforsafetyandeffectiveness.WhileopinionsdifferonthistopicwestandwithothersinappealingtotheFDAtotakewhateverstepsarenecessarytoeliminateallelementsofdoubt.2InanefforttosavecorporatedollarsmanypatientscoveredbyMedicareAdvantagePlanswillseetheiraccess-to-careoptionslessenasMSspecialistsarebeingdroppedfromproviderlistsmoreonthistopiconpage6.3AccordingtotheCongressionalBudgetOfficereportOptionsForReducingtheDeficit2014-2023itappearsWashingtonisexploringthefeasibilityofcurtailingbenefitsforveteransdiagnosedwithanyoneofsevenchronicdiseasesnotconclusivelycausedbymilitaryserviceincludingMS.StudiesarestillunderwaytoexplorethelinkbetweencertainneurologicaldiseasesandexposuretohazardousmaterialsbyGulfWarveterans.IfthismeasureweretopassitwouldbedetrimentaltothemanyveteranswithMSregardlessofwhentheywerediagnosedwhorelyontheVAformedicalcare.ItisincumbentupontheMSFasanadvocacyorganizationtobringthesematterstotheattentionofourconstituents.WeandourfellowmemberorganizationsoftheMSCoalitionareonalerttoidentifyanythingthathasthepotentialtoreducethequalityofcareorthequalityoflifeforthenationalMScommunity.Howeverthefightforwhatisrightisnotlimitedtooureffortsalone.Yourvoiceaswellasthevoicesofyourcircleoffamilyandfriendsmustbeheardandthosevoicesneedtobedirectedtoyourelectedrepresentatives.Thisismoreaboutpolicythanpolitics.Inthefinalanalysiseveryonehasaconstitutionalrighttomaketheirgovernmentawareoftheirconcerns.HavingMSjustmakesitpersonal.JulesKuperbergAlanR.SegaloffCo-ExecutiveDirectorCo-ExecutiveDirector AssistanceArrivesintheNickofTimeIwasdiagnosedwithmultiplesclerosisinNovember2001.FirstIwonderedwhatIhaddonetogetthis.NextIbegantakingprescriptionstohelppreventtheprogressionofthisdisease.Recentlymylifehaschangedduetomyjobbeingeliminatedandmyvisionhasgottenworse.OnamorepositivenotewhileresearchingforhelpIcameacrosstheMSF.Ineededalotofhelpandyourstaffwassoprofessionalcaringandhelpful.Thankyouforthetransportationandutilitybillassistance.MayGodblessallofyou.MichellePriceviaemailIn-HousePublicationsHelpEducatetheNewlyDiagnosedThankyousomuchforthematerialsItissohelpfultobeabletosendpatienteducationmaterialstoournewlydiagnosedemployees.Mostofthepeopleweworkwithareemployedwithourorganizationandareleadingveryactiveproductivelives.WereferthemtotheMSFwebsiteforinformationandthefeedbackwegetisexcellent.AsanurseIhavelearnedmoreaboutMSfromyourpublicationsthanfromnursingschoolJenniferWardviaemailAnnettesStoryInspiresIhavehadMSforeightyearsandIreallyenjoyedADreamisaWishYourHeartMakesTheAnnetteFunicelloStory.IsawalotofmeinAnnette.IhaveeventoldpeoplethatInolongerhaveMSeventhougheveryoneknowsMSdoesnotjustgoaway.ItisaconstantbattleeverydaybutseeinghowAnnettedealtwithitmademefeelalittlebetter.IeventhinkthatIwillstartusingmycane.DorothyAllenviaemailEditorssnoteToborrowthisandothertitlescalltheMSFLendingLibraryat1-888-MSFocus673-6287orvisitwww.msfocus.org.PayingitForwardAfteryearsoftryingIhavefinallysoldsomepropertyIownnowIhavesomemoney.ThereforeitwouldnotberightformetokeepthemoneytheMSFgenerouslygavemetorepairthefrontdoorsofmyhouse.ThatprojecthasbeenanodysseyinitsownwayandImstillnotfinishedyetbutthatsmyproblemnow.Althoughtheexactamountwasnt500thatistheamountIamgivingtotheFoundationsothatyoucanhelpotherswhoneedit.Mymostsincerethanksandappreciationtoyourorganization.EricSmirnowCedaredgeCo.MSFocusWinter20145IfyouhaveanycommentsorquestionsfortheMSFtheycanbeemailedtoeditormsfocus.orgorwritetoEditorMSFocus6520N.AndrewsAve.Ft.LauderdaleFL33309 MSFocusWinter20146ByDanielKantorM.D.MedicalsciencehastakengreatleapsforwardinthepasttwodecadeswehavegonefromhavingnoFDAFoodandDrugAdministrationapproveddisease-modifyingmedicationsforMSin1992tohaving10separatebrandedproductsasofearlyDecember2013.ThereisnodoubtthatthisisexcitingandthattherapidadvancesinMSresearchareamodelofhopefortherestoftheneurologiccommunity.YetdespitetreatmentadvancesforMSandotherexcitingresearchsuchastheidentificationofmoregenesrelatedtoMSaccesstoMScareisgettingincreasinglydifficult.ThisarticleisintendedtoreviewchangesinaccesstocarethatyouyourfriendsorlovedonesintheUnitedStatesmaybefacingin2014andbeyond.BackgroundBackgroundAlthoughthereisnotauniversalhealthcareplanintheUnitedStatesmostpeoplewhoresideheredohavesomeformofaccesstomedicalcare.Accesstohealthinsuranceisnotequivalenttoaccesstohealthcare.FurthermoremanypeoplewhohavehealthinsurancedonotactuallyhaveadequateaccesstoMScare.ThreeTypesofAccesstoCareThreeTypesofAccesstoCareAccesstocarecanbedividedintothreemaintopics1.Accesstophysiciansandotherhealth-careproviders.2.Accesstoservicesandtesting.3.Accesstotreatment.WhiletheAffordableCareActACApromisestoexpandthenumberofpeoplewithaccesstohealthinsuranceitisnotclearwhethermorepeoplewillhaveaccesstocare.Itisalsounclearwhethertherewillbeincreasedavailabilityofoneofthethreetypesofaccesstocarebutadecreasetooneortwooftheothertypesofaccesstocare.Thereareanumberoffactorsthatwillinfluencewhetheranindividualwillhaveincreasedordecreasedavailabilityofthethreetypesofaccesstocarein2014including1.WhethertherewillbechangestothefederallawregardingtheACA.2.ThetypeofhealthinsuranceandspecificplanifanythatanindividualhadpriortotheACA.3.WhetherapersonisonMedicareandiftheychosetraditionalMedicareoraMedicareAdvantageproductduringtheopenenrollmentfor2014thatendedonDecember7th2013.4.WhatstateapersonlivesindifferentstateshavedifferentplansavailableandthisisespeciallyimportanttoconsiderinthecaseofMedicaidexpansion.5.Whattheindividualsemployerdecidestodoaboutofferingornolongerofferinghealthinsurance. MSFocusWinter201476.Whetherapersoniseligibleforfederalsubsidiesandusestheexchangessomearestatewhilemanypeoplewillbeusingthefederalexchange.7.WhattypeofdoctoryouarecurrentlyseeingareyouseeinganMSsub-specialistorareyouseeingageneralneurologist8.Whichmedicationyouarealreadytakingandwhichothermedicationsyouhavebeenoninthepast.Potential2014ChangesinAccesstoPhysiciansPotential2014ChangesinAccesstoPhysiciansandOtherHealthcareProvidersandOtherHealthcareProvidersTraditionalMedicareTraditionalMedicareTraditionalMedicareisthefederalhealthinsuranceplanforseniorsandthedisabled.TraditionalMedicarecovers80percentofyourphysicianandotherhealthcareproviderservices.Theother20percentofyourhealthcareservicescanbecoveredinoneoftwoways1.Youmaypaytheother20percentyourself.2.YoumaypurchaseaMedigaporsupplementplantocovertheother20percent.Theseareofferedbyprivateinsurancecompaniesandyoupaythemamonthlypremiumsothattheywillpaytheother20percent.MedicareAdvantageMedicareAdvantageThealternativetotraditionalMedicareistopurchaseaMedicareAdvantageplan.MedicareAdvantageoffersmoreservicesthantraditionalMedicaretheseservicesvaryinsomecasestheyevenincludegymmembership.MedicareAdvantagecoststhegovernmenttaxpayers14percentmorethantraditionalMedicarebecausethefederalgovernmentwaspayingmoretotheprivatehealthinsurancecompaniesthatadministerMedicareAdvantageplansthantheyweretoindividualprovidersofhealthcareundertraditionalMedicare.ThereasoningwasthatMedicareAdvantageplansofferedmorevaluethroughaddedservicesandtheseservicescostmoneytoadminister.TheACAcallsforMedicareAdvantageplanstostartreceivingfundingsimilartotraditionalMedicarewhiletraditionalMedicarewillalsobegintooffermorehealthandwellnessserviceslikepreventivecarewhichusedtoonlybeofferedbyMedicareAdvantageplans.ButtherearechangeshappeninginMedicareAdvantage2014isforecasttobeaverybadyearforpatientsonMedicareAdvantage.SomehealthinsurancecompaniesmorenoticeablyUnitedHealthcaretheplanendorsedbytheAARParetryingtoreducetheirfinancialriskbycontrollingwhoisintheirriskpool.SincethehealthinsurancecompaniescannotlegallyreleasemembersbecauseoftheirdiagnosessuchasMStheyareskirtingthelawbydroppingthespecialistswhotakecareoftheseexpensivepatients.Manyneurologistshavebeenremovedunilaterallyfromtheinsurancecompaniesnetworksorhavebeendowngradedtonon-preferred.SayingthatMSspecialistsarenotpreferredisanotherwayfortheinsurancecompaniestosaythatMSisnotpreferred.ManypeoplewithMSandothermedicalconditionswantedtokeeptheirdoctorsmovinginto2014sotheychangedMedicareAdvantageplanspriortoDecember7th2013ortheysimplygotridofMedicareAdvantagealltogetherandreturnedtotraditionalMedicarewithaMedigapsupplement.Ifyouhavebeenaffectedbythesechangesbutdidntknowaboutthe MSFocusWinter20148opportunitytoswitchplanspriortoDecember7th2013thenyoumaybestuckinyourcurrentplan.Ifyouwanttoseeyourdoctoryoumayhavetouseoutofnetworkbenefitsyoumayhavepaythehigherco-paydictatedbytheinsurancecompanyorpayforyourownexpenses.Butthatsnotallthatyoucando.YoucanalsospeakupandbeheardbytellingtheCentersforMedicareMedicaidServicesCMSthattheseactionsbytheinsurancecompaniesareunacceptable.SinceCMSisanon-electedbranchofthefederalgovernmentpublicpressureneedstobeexertedonourelectedofficialstohavethempressureCMStoinvestigatewhattheseprivateinsurancecompaniesaredoingandhowtheymaybeviolatingcoreprinciplesofpatientcare.ForexampleinpartsofFloridaaninsurancecompanyisdroppingmanyoftheSpanish-speakingspecialistswhichmeansthatSpanishspeakingpatientshavelessaccesstocare.Weallneedtobereachingouttoourcongressionalsenatorsandrepresentatives.MedicaidMedicaidMedicaidplansareadministeredbyindividualstates.Theygettheirfundingfromamixtureofstateandfederalfundstoinsurepeopleespeciallychildrenandsinglemotherswhofallwithincertainpovertylevels.InsomestatestraditionalMedicaidhasbeenreplacedbymanagedMedicaid.ManagedMedicaidplansareadministeredbyprivateinsurancecompaniescontractedwithindividualstates.TheytrytomanagethecostsofMedicaidandreducethecostsforthestates.InmanystatesitisdifficulttofindneurologistswhoacceptMedicaidbecausethereimbursementforMedicaidcanbeathirdofthereimbursementforMedicare.Thismeansthatadoctormaygetlessthan30totaltoseeyouforafollow-upvisit.UnderthenewhealthcarelawthefederalgovernmentisallowingstatestoexpandtheirMedicaidtopeoplewhomeetreducedpovertyrequirements.InexchangethefederalgovernmentwillpickupthetabforthefullpriceofMedicaidforthestateuntil2016.Thereaftertheywilldosofordecreasingamounts.ManystateshavechosennottoexpandtheirMedicaidsystembecausethestatesareconcernedaboutthesustainabilityofexpandingwhatmanyseeasabrokensystem.InstatesthatopttoexpandtheirMedicaidprogramreimbursementtoHowtocontactyourelectedofficialsHowtocontactyourelectedofficialssothatyoucanSpeakUpandBeHeardsothatyoucanSpeakUpandBeHeardTocontactyourrepresentativevisitthissitetosearchforthemhttpwww.house.govhtbinfindrepTocontactyoursenatorsvisitthissitetosearchforthemhttpwww.senate.govgeneralcontact_informationsenators_cfm.cfmTocontacttheWhiteHousevisithttpwww.whitehouse.govcontactsubmit-questions-and-commentsTocontactCMSCentersforMedicareMedicaidServicesemailDanielle.Mooncms.hhs.govMarilyn.Tavennercms.hhs.govorKathleen.Sebeliushhs.gov MSFocusWinter20149physiciansandotherhealthcareprovidersissupposedtobeincreasedfromthecurrentoftenlowratestothelevelofMedicarerates.ThismaymeanthatincertainstatesmorephysiciansandotherhealthcareproviderswillbeabletoseeMedicaidpatientsItisdifficulttopayfortheoverheadofkeepinganofficeopenwhentheratesaretoolow.ButwhatwillprobablyhappenisthateventuallyMedicarereimbursementrateswilldropdowntosimilarratesofMedicaid.ExchangesFederalandStateExchangesFederalandStateOnekeyprovisionoftheACAisthecreationofhealthinsuranceexchangesormarketplaceswhereindividualsandsmallbusinessesshopforhealthinsuranceplans.Stateshadtheoptionofcreatingtheirownexchangesorhavingthefederalgovernmentdoitforthem.In2014peoplewhopurchasedpersonalhealthinsuranceplansnotthroughalargeemployerwilleitherhaveaccesstothesamephysiciansthattheyhadbeforeiftheyhadinsuranceortheywillbestuckinrestrictiveexchangeswheretherewillbenoorveryfewMSspecialistsavailable.Thislackofaccessmaychangelaterin2014asthephysiciancommunityistryingtofixproblemsandadvocateonyourbehalf.Youtoocanmakeadifference.Sincetheindividualinsurancecompaniesareregulatedbythestateinsurancecommissioneryoucanspeakupandbeheardbywritingtoyourstateinsurancecommissioners.Seetheboxbelow.Youshouldalsocontactyourstateandfederalelectedofficialstotellthemaboutanydifficultiesyouexperience.Duetoprivacyconcernsyourdoctorscannotsendacopyoftheirlettersaboutyoutoyourelectedofficialsanddemandbetteraccessforyoubutyoucanandshoulddoso.Inordertospeakupandbeheardbeasvocalaspossibleandletyourelectedofficialsknowyouarehavingproblemsaccessingcare.HealthInsurancePlansHealthInsurancePlansPurchasedThroughYourPurchasedThroughYourEmployerEmployerManyAmericanshaveaccesstohealthinsurancethatispaidforinsomewaybytheiremployers.AlthoughthepublicwastoldthattheACAwasnotsupposedtoimmediatelyimpacttheseplanswehavenowseenthatallaspectsofthenewfederalhealthcarelawareinterrelatedbecauseinsurancecompaniesaretryingtoreducetheirfinancialriskbyadjustingpremiumstohelppayforpotentiallossesinothersegmentsofthepopulation.Thereasoninsurancecompanieshavemadeiteasiertogethealthinsuranceifyouareemployedbyalargecompanyincludingthegovernmentmakingthosepremiumpaymentspre-taxisthatpeopleemployedbylargecompaniesareconsideredabetterriskbecausetheyarethoughttobehealthier.InsurancecompanieswanttohavepeopleontheirplanswhoareashealthyandinexpensiveaspossiblealsolargeemployershavemorecloutbecausetheyaremakinglargerpurchasesofmoreHowtocontactyourstateelectedofficialsHowtocontactyourstateelectedofficialsTocontactyourstateinsurancecommissionervisitthisinteractivemaphttpwww.naic.orgstate_web_map.htmTocontactyourstatelegislatorsvisitthisinteractivemaphttpthomas.loc.govhomestate-legislatures.html plansandcanmakemoredemandsthananindividual.TheseinsuranceplansareusuallyeitherhealthmaintenanceorganizationsHMOsorpreferredproviderorganizationsPPOsandinthepasttheyhavehadlargenetworksofphysiciansandotherhealthcareproviderstochoosefrom.Whiletheremaybechangesinnetworksofthephysicianandotherhealthcareprovidersontheseprivateinsuranceplansitisunlikelythatin2014youwillseemajorchangesthebestwaytofindoutistomaketwocallsseeboxbelow.HowtofindoutifyouwillHowtofindoutifyouwillcontinuetobeabletoseecontinuetobeabletoseeyourdoctorsyourdoctors1.Callyourinsurancecompanyandaskthemwhetheryourphysicianiscoveredintheirnetworkandifnotwhatyourout-of-networkbenefitsare.2.Callyourphysiciansofficesometimestheinsurancecompaniesmaynothavecompleteinformationespeciallyifyourphysicianisabouttoleavethenetwork.Yourphysicianmayalsohavewaysofhelpingyoubeseen.UninsuredUninsuredAlthoughtheAffordableCareActisexpandinghealthinsurancecoveragetherewillstillbemanypeoplewhocannotaffordorchoosenottopurchasehealthinsurance.Youarenotrequiredtoobtaincoverageifbuyinghealthinsuranceposesasevereeconomichardshipinwhichpremiumsaregreaterthan8percentofyourincome.Anyonecanchoosetopaytheyearlypenaltyforbeinguninsuredtheamountwillbewithheldfromyourtaxreturn.Thepenaltyisaflatfeeperadultorapercentageofhouseholdincomewhicheverisgreaterthepenaltyperuninsuredchildishalftheadultpenalty.In2014thepenaltyis95peradultbutthisescalatesto695in2016.Individualswithhigherincomemaybesubjecttohigherfines.Youcandecreaseyourpenaltybyhavingcoverageforpartoftheyearthepenaltywillbeproratedifthisisthecase.Inadditionyouarepermittedtogowithoutcoverageforathree-monthperiodbeforebeingliableforthepenalty.Accesstoroutinephysicianandotherhealthcareprovidersserviceslikeofficevisitscanbefairlygoodevenfortheuninsured.Mostphysicianshavereasonableratesforpeoplewhoarepayingoutoftheirownpocket.Therearealsonot-for-profitfundstohelpsupplementwhatyoupayaswellaslowpriceorfreeclinicsthatmayofferspecialistservices.Inadditionmedicationmanufacturersareusuallyallowedtoofferyoupaymentassistanceincludingbringingthecostofthedrugdownto0.Thereallyhighcostsinhealthcarecomefromhospitalizationsandmedicationsnotphysicianofficevisits.Potential2014ChangesinPotential2014ChangesinAccesstoMedicationsAccesstoMedicationsMedicationformulariesarethelistofmedicationsthatarecoveredinsomewayandaccessibletoyouunderyourinsuranceplan.Medicationsmaybelistedontheformularybuttheymayhaveexcessiveco-pays.MedicareMedicareMedicarePartDoffersplansthathelppayforthecostsofthemedicationsthatyoutakeathome.Inthepastthosecostswerecovereduptoacertainamountbeforereachingadonutholewhereyouareresponsibletopayforyourmedications.Whenyourcostsget10MSFocusWinter2014 toohighMedicarePartDplankicksinagainandyouareoutsidethedonuthole.WiththeACAthisdonutholewillshrinkandeventuallydisappearsoyouwillnolongerberesponsibleforyourmedicationcosts.MedicarePartDplansofferdifferentmedicationformularies.UnderfederallawmanufacturerscannotofferfreedrugprogramstoMedicarebeneficiaries.TheselawsmaybesofteninginthefuturebutfornowifyourmedicationisnotonthePartDformularythenyouarelimitedtowhatisoffered.YouareresponsibleforthedonutholeandforthepremiumsyoupayfortheMedicarePartDplanaswellasothercostsassociatedco-paysorco-insurances.Therearehowevernot-for-profitfoundationsthatmaybeabletohelppayformedications.Themanufacturersofthemedicationsaregoodresourcesforlearninghowtoaccessthefoundations.TheSouthernMSConsortiumseMScmadeupofneurologistsandotherhealthcareprovidersisadvocatingforyounationallyintermsoftheseformulariesandtryingtomakethesemedicationlistsmorereasonableandaccessible.TheMultipleSclerosisFoundationhasbeenactiveintheseMScaswellasintheMSCoalitionacoalitionofseveralMS-relatednot-for-profits.MedicaidMedicaidThemedicationsofferedtopeopleonMedicaidarefairlydifferentstatetostatebuttheMedicaidprogramsalsopayforthemedicationscompletelyorchargeafewdollarsco-pay.ThedecisionsaboutwhichmedicationsarecoveredontheMedicaidformulariesorpreferreddruglistsPDLsaremadebyacommitteeofphysicianspharmacistsandothersallappointedbythegovernorofthestate.AformerChairofthePharmacyTherapeuticsPTCommitteefortheFloridaAgencyforHealthcareandAdministrationFLMedicaidIregularlyreceivedlettersfromdoctorsaboutmedicationstheywantedtooffertheirpatientsbutitwouldbeevenmorecompellinghadpatientsactuallywrittenletterstothePTmembers.SospeakupandbeheardSearchforthenamesandaddressesofthePTmembersforyourstatesMedicaidandtellthemwhichmedicationsyouwanttobecoveredandwhy.InstateswhereMedicaidisexpandingspeakingupandbeingheardwillbeevenmorecriticalsincetheremaybemorepeoplereceivingMedicaidservicesincludingmedications.JustaswithMedicarepeopleonMedicaidmaynotreceiveco-payassistanceorfreemedicationsfrompharmaceuticalmanufacturers.ExchangesExchangesFederalandStateFederalandStateTheprivateinsuranceplansavailableforindividualsontheexchangesFederalandStatealsocalledthemarketplacehavethreedifferenttiersbronzesilver11MSFocusWinter2014HowtofindoutifyourmedicationsarecoveredHowtofindoutifyourmedicationsarecoveredbydifferentMedicarePartDplansbydifferentMedicarePartDplansYoucanenterinyourprescriptionmedicationsandcompareMedicarePartDplansbyvisitinghttpswww.medicare.govfind-a-planquestionshome.aspx andgold.Thedifferencesintheseplansaremostlyrelatedtothemonthlyout-of-pocketpremiumcostsmedicationscoveredundereachandeveryplanandthepercentageofboththemedicalandmedicationscoststhatyouareresponsibleforuntilyoureachatotalyearlymaximum.Howeverifamedicationordoctorisnotcoveredunderyourplanthenyouareresponsiblefortheentireamount.Theremayhoweverbepatientassistanceprogramsthatcanhelppayforpartorallofthemedicationcost.Tolearnmoreaboutthepatientassistanceprogramortoseeifyouqualifycallthemedicationmanufacturertoaskthemaboutyourindividualsituation.TolearnmoreabouttheAffordableCareActACAvisithttpmymsaa.orgabout-msaca.HealthInsurancePlansHealthInsurancePlansPurchasedthroughYourPurchasedthroughYourEmployerEmployerEveryonesplanisdifferentsolearnyouroptionsbyspeakingtoyourhumanresourcesHRdepartmentandtheinsurancebrokersinvolvedwithyouremployer.Visittheinsuranceplanwebsitesandcalltheirhotlineforhelp.Manyinsuranceplansaretighteninguprestrictingtheirmedicationformularies.Speaktothemanufacturersandkeepyourneurologistinformedaboutyourchoices.Asktospeaktothemedicaldirectorsattheinsuranceplansandasktospeaktoaninsurancecasemanager.AskquestionsandSpeakUpandBeHeardSolutionsWhatYouCanDoSolutionsWhatYouCanDoWeallneedtoworktogethertoimproveaccesstocare.ThereareactionsyoucantaketohelpyourselfandactionsyoucantaketohelptheentireMScommunity.HelpYourselfHelpYourselfTohelpfixyourownaccessissuesyouneedtoexaminewhatyourcurrentinsuranceaccessisandseehowitwillchange.Thehelpfulstaffatnot-for-profitsliketheMultipleSclerosisFoundationcandirectyoutoresources.MedicareAdvantageMedicareAdvantageDis-enrollmentPeriodDis-enrollmentPeriodIfyouselectedaMedicareAdvantageplanduringopenenrollmentwhichendedDecember72013andnowfindyouneedbetteraccessyoucantakeadvantageoftheMedicareAdvantageDis-enrollmentperiodthatextendsfromJanuary1February142014.Tofindoutmoreaboutthispleasevisitwww.medicare.govsign-up-change-planswhen-can-i-join-a-health-or-drug-planwhen-can-i-join-a-health-or-drug-plan.htmlcollapse-3192BePartofaClinicalTrialBePartofaClinicalTrialClinicaltrialsareresearchtrialsthattestnewtherapiesorevenmedicationsthatarealreadyFDAapprovedandtheresearcherswanttoknowmoreaboutpatientpreferencesandotheroutcomes.BeingpartofaresearchtrialisagreatwaytogivebacktothecommunitybyhelpingtoadvancethescienceofMS.Itisalsoagreatwayofgettingfreeaccesstosomeaspectsofyourcareincludingthecostofthemedicationbeingstudied.Clinicaltrialsdorequireaninvestmentoftimesotheyarentrightforeveryone.Andwhileyoumayhaveaccesstoanewandexcitingmedicationbeforeitsreleasedyoumaybeexposingyourselftounknownrisks.Talktoyourneurologistifyouareinterestedinlearningmore12MSFocusWinter2014 aboutclinicaltrialsthatmaybeavailabletoyou.Youcanalsosearchforresearchtrialsathttpresearch.semsc.usorhttpwww.centerwatch.comctrcMSFocusindex.htmlHelptheCommunityHelptheCommunitySpeakUpandBeHeardSpeakUpandBeHeardTohelpfixtheaccessissuesfortheentireMScommunityyouneedtoSpeakUpandBeHeard.YoucandothisbycontactingthemediayourelectedofficialsinsurancecommissionersandtheCentersforMedicareMedicaidServicesevenifyouarentonMedicarewewillallbethereonedayoranotherandthisistheplanthatweallpaytaxesfor.1.ShareyourstoryShareyouraccessissueswiththerestoftheMScommunitybyvisitinghttpsemsc.usTheinsurancecompanieselectedofficialsandthemediawanttoknowifyouarehavingaccessissues.Byfillingouttheformathttpsemsc.usyoucantellusyourstoryinaprivateconfidentialway.2.CallyourlocalnewsstationThenewsisalwayslookingforpatientstoriesandthereisnothingbetterthanhearingaboutrealissuesfromrealpeople.3.Letthenot-for-profitsknowthatthisisimportanttoyouYourneurologistsandotheralliedhealthprofessionalsknowhowimportantaccessissuesareanditisimportantforyoutoletthenot-for-profitsknowthataswell.BycollectingeveryonesindividualstorytheseMScistryingtowakeuptheentirecommunity.4.ContactyourelectedofficialsandtheCentersforMedicareMedicaidServicesNothingspeaksmoretoelectedofficialsthanthevoiceofconcernedconstituents.Tellthepeopleingovernmentwhatisimportanttoyou.5.ReachbeyondMSAccessissuesaffecteveryonewhetheryouhaveMSornot.TellyourfriendsneighborsandcoworkersaboutissuesfacingyoutheMScommunityandallpeoplewhoseekmedicalcarethatisalmosteveryAmerican.Ifyouarepartofacivicgrouporsocialclubletthemknow.Arrangeforlocalexpertstocomeandspeaktoyourgroupandgetinvolved.SpeakUpandBeHeard.6.TellyourdoctoraboutyouraccessissuesYoumaynotrealizeitbutyourdoctormaybefightingonyourbehalfinallthesewaysaswell.Yourdoctormayhaveindividualsolutionsforyou.7.UsesocialmediatospreadthewordLettheworldknowthatyouwanttoKeepYourDoctoryoucanusethetwitterhashtagKeepYourDoctortoshareaccessissuesandsolutionsaswellasinformthecommunityaboutwhatactionsyouaretaking.Putthewordoutthereonallthesocialmediasitesthatyouuse.SpeakUpandBeHeard13MSFocusWinter2014TheSouthernMSConsortiumseMSciscommittedtoadvocatingformultiplesclerosisMSpatientsintheUnitedStatesbyengagingthevariedstakeholders.TheseMSciscomposedofneurologistsandalliedhealthprofessionalsdedicatedtothetreatmentandmanagementofpatientswithMS. 14MSFocusWinter2014DanielKantorM.D.isImmediatePastPresidentoftheFloridaSocietyofNeurologyfounderoftheSouthernMSConsortiumseMScamemberoftheMSFHealthcareadvisorypanelChiefMedicalCorrespondentforMSWorldandMedicalDirectorofNeurologiqueanorganizationdedicatedtopatientcareresearchandeducation.Youcanfollowhimatfacebook.comNeurologiqueortwitter.comNeurologique.FriendsoftheFoundationmanyofyoucametoknowCrystalMilliganandDanielKantorM.D.intheirindividualrolesastirelessadvocatesforthosewithMSCrystalasaformerdedicatedMSFcaseworkerandSupportGroupCoordinatorDanielasaveryactivememberofourHealthcareAdvisoryBoard.NowwewouldliketointroducethemtoyouashusbandandwifeThebrideandgroomexchangedvowsonNovember27th2013inKeyWestFla.PleasejoinusincongratulatingDr.andMrs.DanielKantorastheybegintheirnewlifetogetherDanielandCrystalonbehalfofyourMSFfamilywesendbestwishesforalifetimeofloveandhappiness.InadditionwewouldliketothankyouforyourgenerousdonationtotheMSFwhichwilldirectlyhelpthosewithMSthroughourprogramsandservices.ThecouplewillresideinPonteVedraBeachFla.whereDr.KantoristhefoundingmedicaldirectorofNeurologiqueFoundationInc.Theycanbereachedviaemailatcrystalkantor1127gmail.com.WeddingBellsareRingingattheMSF 11MSFocusWinter2014 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 BeginningwithherveryfirstinjectionofglatirameracetateSusanB.Trachmanstartedsavingthemedicationsemptysilver-cappedcaramel-coloredvials.Shewasdeterminedtomakesomethingoutofthemedicationinjectionordeal.Manyyearspassedbeforeshephysicallystartedcraftingherartbutitwasalwaysonhermind.FastforwardtoMarch2013.SusansartisfeaturedinanexhibitatUCLADavidGeffenSchoolofMedicine.ThosevialsshesavedthroughouttheyearsalongwithMRIsandothertreatmentmaterialshavebeenmadeintopiecesofartthatrepresentdifferentaspectsofherlifewithMS.SheexplainsMyartisticjourneymuchlikemyphysicalandemotionaljourneywasnotpreplanned.IthadnocontextandIhadnoagenda.MycorepiecesincludingOrderBalanceChaosandFlowerswerenotintendedtotellastorytheyweresimplyexpressionsofemotionsoraspirationsatgivenpointsintime.Thesesnapshotscapturedmyneedtocreatestructureandpredictability.Ordershowcasedmyneedtofindmypointofequilibriumbothphysicallyandfiguratively.Balanceshowcasedmyneedtolearntocopewiththeunmanageable.ChaosshowcasedmyneedtolearntoacceptwhatIcouldnolongerdo.LastlyFlowersshowcasedmyneedtobegratefulforwhatIcoulddo.Seesnapshotsoftheartworkonthefollowingpages.Susanwasbornin1961intheRanchoParksectionofLosAngeles.ShelovedartfromanearlyageandfondlyremembersherfavoritefamilyoutingsgoingtotheartmuseumonSundays.Thankstohermothershestillhastheselfportraitshecreatedinkindergarten.Shealsolovedhelpingherfatheranengineerandhobbyistphotographerworkinthedarkroom.Hisinfluenceisseeninmanyofherpieces.AftergraduatingfromUCLAin1984withaBachelorofArtsinDesignSusanexpressedhercreativitybyworkingasaninteriordesignerdoingcommercialandresidentialdesignforvariousfirms.Eventuallysheopenedherownbusiness.SusanwasdiagnosedwithMSinJuneof1988andbeganstockpilingmaterialsfromhervarioustreatmentsalmostimmediatelywiththeintentofsomedaydoingsomethingwiththesematerials.HoweverafterSusanstwosonswerebornin1994and1997shedecidedtodedicateallofherenergytomotherhood.SomedaycameapproximatelysevenyearsagowhenbetweencarpoolrunsMSFocusWinter201419TheArtofMSTreatments 20MSFocusWinter2014shestartedconceptualizingherfirstpieceOrder.AsSusansMSprogressedandherneedforassistivedevicessuchasacanewalkerandoccasionallyawheelchairwererequiredherfocusremainedonwhatshecoulddonotonwhatshecouldnotdo.Thispositiveoutlookisevidentinallofherpieces.Themakingofmyartwascatharticcreativeandexhilarating.Itwasfreeing.IhadcontrolsomethingthatovertimeIhavehadverylittleofespeciallyasitrelatestomybodyshesays.HavingMSlikelifeitselfisunpre-dictable.Weallhavesomethinganddwellingonthethingsthatyouhavelostorcantcontroldoesnotchangewhatisorwhatwillbe.Makingsomethingofwhatyouhaveisallthatyoucando.WhileherjourneyremainsunpredictableSusansaysoneaspectremainscertainshewillcontinueexpressingherselfthroughart.Hermindisalreadyworkingovertimeonwhatsheshouldcreatewiththeremnantsofhercurrentmedications.FlowersIntegratedDigitalArt90x16Digitallymasteredcollagesonpapermountedend-to-endmattedonillustrationboardandfloatedinawoodframe.ThispieceactuallyfiveindividualpieceslaminatedtogetherwasdoneinPhotoshopandevolvedoveraseven-yearperiod.Ichosetocreateaneye-catchingpieceofartwhichfromadistancelookslikecolorfulflowerswithColorFormlikeleavespositionedrandomlyonablackpatternedbackground.Butwhenonegetsupcloseonecanseethattheflowersaremadefromthesyringesthatcausedmydailypain.Myfocuscontinuestobeseeingbeyondthefatigueanddiscomfortandfindingthebeautyoflife.BalanceMobile18x50Thisismysecondpiecewhichiscomprisedofboxescladinlabelsbottlesandbottlecomponentsfishinglineandaspinningmotor.ItisaconstantstruggletofindbalanceinmybodyandmylifeastheMSaffectsmystrengthstabilityandenergy.AttimesIfeellikeIamteeteringonanunstableedgebutIstillfindmybalance.Order123AssemblageThree14x11piecesSolutionbottlesmountedinshadowboxesarrangedindeliberatewellthought-outcontrolledpatterns.SinceIcouldnotcontrolmydiseaseandthesymptomsthatitcausedIwantedtocreateorderwhereIcouldfindit. LivingColor1234MyPsychedelicBrainDigitalCollagesFour14x17imagesdisplayedonindividual15x22x-rayviewboxes.MRIimagesofartistsbrainandskeletoninblackandwhite1andcolorized234printedonbacklitfilmanddisplayedonilluminatedx-rayviewboxes.LivingColor1isacollageoftwounalteredMRIimagesoftheartistsbrainwitharrowspointingtothewhitespotsindicatingplaque.TheMRIimagesinLivingColor234havebeendigitallycolorizedbytheartist.YesIseetheplaque.ItsinblackandwhitebutIalsoseebrightvibrantcolors.Iseebeauty.Iseelife.Iseeme.21MSFocusWinter2014ChaosSculpture14x14x11Bottlessuspendedinclearpolyesterresin.ThisisabookendtotheOrder123Series.HavinghadMSforover24yearsInowknowthattherearemanyaspectsofmybodyIcantcontrolandmyday-to-daysymptomscanbechaotic.InsteadofbecomingdepressedandwithdrawnIusemyarttomanipulatethechaos.Thebottlesarechaoticallytossedaroundwithoutanyrhymeorreasonlikemysymptomaticexacerbations.Thetwo9x9resinplanesareembeddedinanunevenresinbasefurthersymbolizingthelackofcontrolandstabilityofthecourseofmyMS.JavaChipWallsculpture132x32120sharpscontainersusedforthedisposalofneedlesandsyringeshungonninesteelrods.Wallsculptureutilizesacommonlyseenobjectusedforthedisposalofsyringes.The120sharpscontainersareconfiguredinninerepetitivesegmentsrepresentingthenumberofcontainersusedfortheby-productofthedailyinjectionsofthemedication.12years624weeks4380nightlyshotsandmypostshotdoseofcreamydeliciousStarbucksJavaChipicecream...Somethingtolookforwardto.SusancontinuestoresideinLosAngeles.ShehastwosonsAlexandHarrisonalovinghusbandAndyandthecutestdogintheworldMolly.ForinformationonSusansworkpleaseemailSusanTrachmanatstrach928sbcglobal.netorTedMeyeratTedartandmed.com. MSFocusWinter201422ParticipateandAdvocateMoversShakersNewsletterKeepsYouInvolvedwithStudiesandSurveysByErikaBolinAsNationalMSEducationandAwarenessMonthapproachesinMarchyoumaybewonderinghowyoumightgetinvolvedinadvocacyforMS.OryoumaybeaskingyourselfWhatisadvocacyAseditoroftheMultipleSclerosisFoundationsMoversShakersMSadvocacynewsletterIcanoffersomeadvice.ForstarterssubscribingtotheMShelpsyoustayinformedaboutopportunitiestoparticipateinstudiesandsurveystwogreatwaystobeaMSadvocate.HeresanexampleofhowyourparticipationcanmakeadifferenceRecentlyanamelesssourceranaworkplaceaccommodationssurvey.ThatinformationgatheredviasurveyresponseswentdirectlytowardsmakingsureemployerswerehonoringtheAmericanswithDisabilitiesActADAanactthatensuresreasonableaccommodationsforemployees.Thosewhoparticipatedinthesurveymadeananonymouscontributionwiththeirnonbiasedandconfidentialinput.AnorganizationthatworkstoprotectthoserightsheardfrompeopledirectlyaffectedbytheADA.ThesourcethengatheredtheresultswhicharetobesharedwithlocalbusinessesstateagenciesorevenpresentedtoCongressataMS-relatedcaucus.Your15minutesofparticipationabsolutelycontributestothefocusedpresentationotherswillthenusetohelpanationsworthofcitizensAsanaddedbonusyoucanbeveryactiveinvarioussurveysandstudiesrightfromyourownhome.Ispendagreatdealoftimecompletingsurveyscallingaboutstudiesandcheckingonclinicaltrialstobesuretheyaregoingtobevalidwhenthereadersgettheirissues.Mostparticipationrequestsarequickwhilesomearelengthier.Eachsurveystudyortrialhasasummarysoyouknowwhatsinvolvedbeforecommitting.Whenthereisadvocacyregardingnewlegislationwewillincludeawheretosignorcontactlinkaswell.TheMS-relatedclinicaltrialsareoftenlocationspecific.Theyaremoretime-consumingandtypicallyrequiregoingintoafacilitysomewherethesummarieswilldirectyou.Afterabriefsummaryonthewhowhatandhowyouwillbepromptedtotakeanonlinesurveybyclickinganactiveweblink.Orforastudyyouwillbegivenanemailcontactortelephonecontacttogetstarted.BothsurveysandstudiesarebasedupononesexperiencewithMSinsomewayforexampleWhichmedicationdoyoutakeandwhySofareveryoneofthemhasstated confidentialthoughsomewillaskforyournameandaddressatcompletiontosendyoucompensationforhelpingoutusuallybetween15to50viagiftcardcheckorAmazonshoppingcreditWhenwearetoldofguaranteedcompensationitislistedinthesummary.Thosethankyougiftsarejusttheproverbialcherriesontopofthesundaeassharingyourexperiencesgoesalongwaytohelpingourentirecommunity.Sometimesthesurveysummarieswillnotspecifygifts-for-participation.Thisoftenmeanstherearentanyorthegiftsarelimited.Thesurveysareusuallyshortenoughtodowithacupofcoffeeinthemorning.Thestudiesusuallytakeabitlonger.Thesurveysareusuallydoneviacomputer.Thesponsorsofferalinkthatwhenclickedonbringyoutoasecureonlinesurveywithmultiplequestionstoanswerwithhelpfromyourmouse.Thequestionsareveryspecifictothesurveysgoal.TheMScontainsmorethanjustsurveysandstudieshoweverEacheditionalsohasashorthow-tofocusingonapartofadvocacyawarenessorfundraising.Youmayhavewantedtostartbeingactiveinoneoftheseareasbutwereatalossonhowtobegin.Thissectionisdesignedtobeastartingpointwitheasytofollowdirections.FinallyeachmonthwetalkwithsomeoneinourcommunitythathasraisedawarenessfundsoradvocatedforMS.Theysharehowandwhattheydidtogetinvolveditisveryinspiring.Youtoocanbeinthissectionjustemaileditormsfocus.organdtheyllgetittome.TheMSnewsletterisagreatwaytoengagewithothersandhaveyourvoiceevenifitisanonymousbeheard.IfyouarenotgettingtheMSadvocacynews-letterpleasegoontowww.msfocus.organdnavigatetothepublicationsarea.Thereyouwillfindapromptforyouremailtoacceptdeliveryofthemonthlynewsletter.ErikaBolinisaretiredcomediccelebrityjournalistnomdeplumeEmilyBlunt.ShehasalsohostedsomeofMovielandsbiggestredcarpetevents.ManyofherworkscanbefoundatheronlinevenueBluntReview.com.ErikasownMShasslowedherdownbutshestillusesherweb-basedwritingstokeepherbrainactiveandmakepeoplelaughwithlesstime-sensitiveDVDreviews.SheisalsotheeditorforMSFsMoversShakersadvocacynewsletter.MSFocusWinter201423 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. MSFocusWinter201425 27MSFocusWinter2014EachyeartheMSFmakesdreamscometrueformanyindividualswithMSthroughtheBrighterTomorrowGrantBTGProgram.ThegoalofthisnationalprogramistoprovidegoodsorservicestoimprovequalityoflifeforthoselivingwithMSbyenhancingsafetyself-sufficiencycomfortorwell-being.ThosewhohaveneverreceivedaBTGcanapplyannuallyfromJune1sttoSeptember1st.Thefollowing2013BTGrecipientssharedhowtheirlivesimprovedthankstohelpfromtheMSF.ServiceDogMakestheGradeForaboutadecadeadevotedLabradorretrievernamedDieselhelpedJanisBrackenofLeechburgPenn.navigatelifewithMS.WhenDieseldevelopeddiabetesandlosthisvisionhecouldnolongerperformasaservicedog.EnterCharlieaspunkyyounglabeagertopleasebutinneedofdisciplineandtraining.Mynewlabisnowoneyearoldandneedsservicedogclassessohecanhelpme.ImissnothavingtheuseofmyservicedogIusedmypreviousdogforambulationandstanding.IdontgooutasmuchanymorebutthedogsaregoodfriendstokeepJaniswroteinherBTGapplication.AfterlessonsprovidedbyRingersPetDogTraininginTarentumPenn.CharlieprovedtobeacapablesuccessortoDiesel.ThankyouforthelessonsforCharliethetrainerwasexcellentJaniswrotetotheMSF.NowCharliewearshisservicevestandgoeswithmeanywhereIwantorneedtotakehim.Hehasassistedmeinchurchinrestaurantsondaytripsandwhileshopping.ThetrainerassistedwithteachinghimgoodbehaviorandhowtowalknexttomeprovidingbalanceassistancewhenIneedit.ThankyouagainforthelessonsforCharlieandforcaringaboutme.RelaxingisEasywithnewChairDiagnosedwithMSin1999LeslieEganofChicagoIll.isgladshehasbeenabletocontinueworkingeventhoughlegpainandcrampingherworstsymptomsmakethejobuncomfortableattimes.Lesliesrespitecomesattheendofthedaywhenshecanpropupherfeetandrelaxinaneasychair.ForyearsLeslieusedan 28MSFocusWinter2014easychairthatwassooldandwornoutthatithadtobeproppedupwitholdcatalogstokeepitfromleaningtooneside.Thelegrestwasstuckintheupposition.Thatchairhasrecentlybeenretired.InitsplacesitsanewreclinerworkingfootrestandallcourtesyoftheMSFsBTGprogram.IappliedforthegrantbecauseIcanworkanddealwiththelegproblemsbutwhenIcamehomeIwantedtorelaxinachairthatwasntproppedup.FinanciallyIcouldntaffordanothereasychair.Thischairismylittleluxury.IdontgetachancetowatchTVorrelaxthatoftenbutwhenIdoIreallyappreciatethisgiftfromtheMSFshesays.StrollerKeepsMomontheMoveLikemanymomswithMSDawnFlindersofModestoCalif.likestokeepactiveanddoasmuchasshecanwithherchildren.SonJaydennow3yearsoldwasbornwithspinabifidaandclubfeetsohestillneedsastrollerwhenhegoesoutwithhismom.HissinglestrollerservedthefamilywelluntilbabyLogancamealonginearly2013.GoingoutwiththechildrenbecameastruggleasDawnexplainsinherBTGapplicationIcannotgotothestoreorevenwalkanywherewithmykidsbecauseJaydencannotwalkdistances.SoIputhiminthesinglestrollerandhavehimholdthebaby.Itsverydangerous.Myparentssupportusandtheycannotaffordtobuyusanewstroller.WithanewdoublejoggingstrollerfromtheMSFDawnhaspeaceofmindwhenshetakestheboysout.Whenshewantstopickupthepacethestrollerisdesignedforgettingsomeexerciseaswell.Theboysdontmind.Thankyousomuchtheyloveitshesays.RightatHomeonaTreadmillFatigueandnervepaininherarmsandlegsaretwomajorMSsymptomsthatNatalieBackmanofCharlestonS.C.struggleswitheachday.Whensheapproachedherdoctoraboutaremedyforthesesymptomsherecommendedexercise.Researchonthetopicfurthersupportedthebenefitsofexerciseforhercondition.Howeverabusyworkscheduleleftlittletimeforattendingnearbyexerciseclassesandusingequipmentatthegym.NowwithabrandnewtreadmillinherhomeNataliecanexerciseatherconvenience.Shesalreadyexperiencedabigimprovement.SincereceivingitinSeptemberIvebeenabletoexercisemuchmorethanIwasbeforeshesays.Itissuch MSFocusWinter201429ablessingtohaveanorganizationabletohelppeopleinmysituationdiagnosedwithMSbyprovidingtheitemsweneedtogetby.TabletConnectshertotheWorldFormuchofherlifeRuthDischofNewGlarusWisc.hasexperiencedthelossesthatcomewithprogressingMS.Thefirstsymptomsofthediseaseappearedinthemid-1970s30yearslatershewaslosingstrengthinherlegsandwasunabletofunctionathome.In2007Ruthenteredanursinghome.Todaysheisbed-boundunabletositupmorethansixhoursaday.AndyetRuthdecidedtopushbackagainstthelossesandstartmakinggainsbyusingtheonephysicalabilitythatremainsshecanstillmovefingersinonehand.InherBTGapplicationsheexplainsAnAppletabletwouldgivemeincredibleeducationalandentertainmentopportunities.Connectingtopeopleandtheworldoutsidethenursinghomewouldmakeeverydayherebrighter.ByusingfreevoicerecognitionsoftwareRuthnowdictatesemailstofamilyfriendsanddoctors.Shereadsbooksandsurfstheinternetwiththeswipeofafinger.Theseactivitiesshesaysgivehersomethingtolookforwardtoeachday.InHotWaterWithacoldwinterbearingdownontheirhomeinMiamisburgOhioEllenandMarkCampbellwereespeciallygratefulforthenewhotwaterheaterthatcametheirwayviatheBTGprogram.EllenturnedtotheMSFforhelpwhentheiroldandcrackedwaterheaterseemedreadytofail.Abrightertomorrowwouldbesafetyinknowingwecouldhavehotwatershowersandcleanclothesshewrote.Ithasntbeeneasyforthecouplewhoarebothondisabilitytokeepthebillspaidformedicalandhouseholdexpenses.Ellensayssheevenhadtodepleteher401KaccounttopayforrehabilitationandmonthlyMStreatmentinfusions.DiagnosedwithMSin2001Ellenshealthreceivedanotherblowin2010.Thatwastheyearshelearnedshehadbreastcancerandneededtoundergoadoublemastectomy.ItwasalsotheyearMarkneededheartsurgery.Eveninthemostdifficulttimesthecouplerefusestoletsituationsbringthemdown.WeremainoptimisticwithhopeandlaughterEllensays.MakingaSplashWhenMSweakenedherlegsBethPughdiscoveredthepowerofswimmingto MSFocusWinter201430maintainmobilityandtoimproveoverallwellness.WithfreeaccesstoaprivatepoolnearherhomeinDenverColo.sheenjoyedregularexercisesessions.HoweverBethsswimmingregimeendedin2009whenshemovedtoBillingsMont.andcouldnotaffordtojoinagymwithapool.Spasticitymadetraditionalcorestrengtheningexercisesdifficulttheweaknessreturned.ThankstoaBTGBethisbackintheswim.AsamemberoftheRockyMountainCollegegymshecanevenexerciseinthewinter.Imswimmingtwiceaweekwithavisittophysicaltherapistaftereachswimtohaveherdodeeptissuemassagetoremovegiantspasmsinmylegsshesays.Mygoalistogetbackupto20lapsImcurrentlydoing10.OnceIworkthroughthepainIcanimprovemyoverallbodyfunction.ThenIneedtojustkeepitthere.IwouldnotbeasdedicatedtothispainfulprocessifIdidnthavethegrantforthepool.IfeelobligatedtomakeitworkinmyfavorasathankyoutotheMSFyoufolksrockHighSchoolReunionbringsFunandSupportAsthedateofher45thhighschoolreunionapproachedDiannaCronbegantowonderifherdreamofattendingwouldbecomeareality.Onemajorobstaclestoodinherway.Wheelchair-boundandinneedof24-houraideserviceDiannahadnomeansoftransportationfromherhomeinEllenvilleN.Y.tothereunionnearly45milesawayinCallicoonN.Y.Shecouldnotaffordadriver.Ilastattendedmy30threunionwhichtookplaceatthesamefacilitybutatthattimemyadultsonaccompaniedme.MysondiedinanautomobileaccidentlaterthatyearshewroteintheBTGapplication.Mychildhoodandhighschoolexperiencewasoneofhappymemoriesgoodfriendsandasenseofbelonging.WhileIhavekeptintouchwithsomeofmyschoolfriendsthereareothersIhavenotseensincethelastreunion.EveryoneisexcitedImightbecomingthisyear.TothedelightofallwhoattendedDiannaenjoyeddinnermusicandsocializingwithherclassmatesattheLibertyHighSchool45threuniononOct.5thattheVillaRomaResort.ShewastransportedtotheeventcourtesyofaBTGbythesameagencythattakeshertoherdoctorsappointments.ApplicationsfortheBrighterTomorrowGrantareacceptedfromJune1toSeptember1ofeachyear.ForfurtherinformationontheBrighterTomorrowGrantcallourProgramServicesDepartmentat1-888-MSFOCUSoryoucancontactusbyemailsupportmsfocus.orgorgotowww.msfocus.orgBrighter-Tomorrow-Grant.aspx. MSFocusWinter201431AnotherFantasticDestinationforEducationalProgramsatSeaTheMultipleSclerosisFoundationisexcitedtoannounceits2015MSFCruiseforaCauseasevennightexoticcruisedepartingfromSanJuanPuertoRicoonFebruary1st2015.WhyexoticJustlookattheamazingplacesweplanonvisitingSanJuanPuertoRicoCharlotteAmalieSt.ThomasBassetterreSt.KittsOranjestadArubaandWillemstadCuracaoBookearlytoassureastateroomofyourchoice.Formoreinformationseepage24.TuneintoYourFavoriteMSTopicsontheAll-NewMSFocusRadioLikeajukeboxloadedwithyourfavoritetunesthenewMSFocusRadioisnowonlineandopenforyourlisteningpleasure.Wevedelvedintoourextensivefilesofwritteneducationalmaterialsaboutawiderangeoftopicsanddevelopedaudioversionsthatcanbeeasilyaccessed.WithafewclicksofthekeyboardlistenerscanexploretimelesstopicsrelatedtolivingwellwithMS.ForondemandplaytuneintoMSFocusRadioatSoundCloud.comMSFocusRadio.Lookformoreinformationcomingsoon.PlayitCoolBeginningFebruary1sttheMSFwillacceptapplicationsfortheCoolingProgram.ThroughthisprogramtheFoundationprovidescoolingaccessoriestothosewhoneedthemmostespeciallywhenrisingtemperaturesthreatentostirupMSsymptoms.Formoreinformationandanapplicationseepage41.CallingAllPotentialMSFAmbassadorsApplynowforachancetobecomeapartofanamazingteamofMSFambassadorswhoworkwithinthelocalcommunitiesandsometimesnationallytoeducateothersaboutthediseaseandwhattheycandotohelp.Formoreinformationandanapplicationgotopage39.ShowYourSupportfortheT-shirtsmousepadskeychainsandmore.Visitwww.msfstore.com Therearemanycontributingfactorsthatcanleadtoswallowingproblems.ForindividualswithMStheunderlyingcausesofdysphagiaarelesionsinthepartofthebrainthatcontrolswallowinglargelythebrainstemandorthenervesthatprovideproprio-ceptivefeedback.WhenlesionsarepresentneuronsareunabletotransmitimpulsesefficientlywhichleadtoMSsymptomsincludingdysphagia.Additionallysomemedicationscancausedrymouthwhichcanworsenswallowing.ThesemedicationsincludeAnticholinergicsprescribedforbladderdysfunctionordiarrheaincludingpropanthelineNorpanthPro-BanthineanddicyclomineBentyl.TricyclicantidepressantssuchasamitriptylineElavilEndepdesipramineNorpramindoxepinSinequanimipramineTofranil-PMnortriptylinePamelor.SelectiveSerotoninReuptakeInhibitorsSSRIsincludingfluoxetineProzacsertralineZoloftcitalopramCelexaandparoxetinePaxil.NorepinephrineReuptakeInhibitorsincludingvenlafaxineEffexorandduloxetinehydrochlorideCymbalta.Dysphagiaisadeceptivelyseriousconditionifleftuntreated.Withoutpropernutritionindividualscanbecomedehydratedormalnourished.Whenfoodtravelsintothelungsandortheupperairwayaspiratedfoodorliquidscanleadtopneumoniaadangerouslung32MSFocusWinter2014Dysphagia101TipsforSafeSwallowingByMarissaA.BarreraMSMPhilMSCSCCC-SLPandMichaelaA.MedvedMATSSLDCCC-SLPSincethedevelopmentofdisease-modifyingtherapyformultiplesclerosisinoralformulationpillindividualswithMSnowmorethaneverneedtomonitorthesafetyoftheirswallowing.Dysphagiaordifficultyswallowingisestimatedtooccurin50to55percentofindividualswithMS.Colloquiallydysphagiaisassociatedwiththesensationoffoodgoingdownthewrongpipebutinactualityitisadangerousandlife-threateningcondition.Speech-languagepathologistsSLPsarelicensedprofessionalstrainedintheevaluationandtreatmentofswallowingdisorders.WhatCausesSwallowingProblems 33MSFocusWinter2014infectionwhichisoneoftheleadingcausesofdeathforpersonswithMS.SignsSymptomsSignsandsymptomsofswallowingdysfunctionmayincludeFoodgoingdownthewrongpipemorethanonceaweek.Difficultycontrollingfoodorsalivainthemouth.Findingfoodinyourcheeks.Difficultyinitiatingaswallow.Awetorgurgle-likevoiceduringoraftereating.Unusualornoisybreathing.Extraeffortortimeneededtochewswallowandfinishameal.Coughingduringorimmediatelyaftereatingdrinking.Recurringpneumoniaorchestcongestion.Unexplainedweightlossordehydration.AcomprehensiveevaluationbyaSLPwillhelpdeterminethenatureandseverityofthecondition.Speakwithyourphysicianifyouthinkyoumaybenefitfromadysphagiaevaluation.TreatmentOptionsFollowinganevaluationaSLPcandevelopapersonalizedtreatmentplanthatmayincludeswallowingexercisese.g.MendelsohnMasakoandShakerexercisesdietmodificationse.g.smallerpiecesoffoodsoftfoodthickenedliquidsandorcompensatorystrategiese.g.headturnchintuckuseofastrawtomanagedysphagia.Assistiveandadaptivetechnologyforswallowingisanoften-overlookedareathoughsuchproductscansignificantlyimprovesafetywheneatingpromotemealtimeindependenceandimprovenutritionalstatus.IfyouoralovedoneexperiencesfoodgoingdownthewrongpipedifficultycontrollingfoodorsalivainyourmouthandorfindfoodinyourcheeksafteryouredoneeatingthenGuardianTherapybySpectramedmaybeyoursolution.AfundamentallydifferentapproachforthetreatmentofdysphagiaGuardianTherapyusesneuromuscularelectricalstimulationNMEStopromoteimprovedstrengthtimingandre-educationofswallowingmusculature.GuardianTherapyisanon-invasivetreatmentadministeredbyacertifiedspeech-languagepathologistthatutilizesasmallportablestimulatorthatgeneratescustomizableelectricalpulses.Thesepulsesflowthroughawireleadtoapairofsmallelectrodesplacedonthesubmentalregionunderyourchin.Theelectricalcurrentpassesintothebodyandcausesanelectricalreactioninthemotornervesthatcreatesamusclecontraction.Whiletreatmentsessionslastonly30minutestheuseofGuardianTherapycanpreventmuscledisuseatrophypromotemusclere-educationstrengthenweakswallowingmusclesreducetheoccurrenceofaspirationandincreasethespeedofswallowing.Thishighlyefficacioustreatmenttechniqueissafeaffordableandcanpreventtheoccurrenceofdeadlypneumonia.Contact800643-1917tolearnmoreaboutavailabilityofGuardianTherapyinyourarea. Ifyouoryourlovedoneisexperiencingdysphagiayoumaywanttotrysomeofthefollowingprofessionaltips.Notonlyaremanyofthesetipscommonsensebuttheyarealsocosteffectiveandmostimportantlyincrediblyeffectiveinimprovingswallowingsafety.Placeyourelbowsonthetablethiswillkeepyourupperbodyandcheststeadywheneating.Keepfeetfirmlypositionedonthefloorthishelpsyourbodyfeelsecure.SitupstraightNotonlywhileeatingbutyoushouldalsoremaininanuprightpositionforatleast30minutesfollowingamealtime.NevereatordrinkwhenreclinedWhenswallowingpillstrymixingthemintoasmallbowlofpuddingapplesauceoryogurt.Alsotryputtingpillsintoasoftpieceofmarshmallow.Alternatebetweenfoodanddrink.Ruleofthumbonesipofliquidforeverythreebitesoffood.Forsomeindividualsitischallengingtohavefoodgoallthewaydowntheesophagus.Inthissituationitmaybehelpfultoalternatebetweensmallsipsofliquidandbitesofsolids.Eatsmallermealstoreducefatigue.Similartootherphysicalactivitiesswallowingcancausefatigue.Ifmusclesbecometiredtrytakingabreakbyseparatingthemealintosmallerportions.Chooseyourfoodswiselyashardchewycrumblyordryfoodscangeneratesmallparticlesoffoodsthatcanleadtoswallowingdifficulty.Consideringaddinggravyorsaucestomoistenfoodsorifnecessaryavoidthesekindsoffoodsaltogether.Inextremecasesofdysphagiafoodmayneedtobeverysoftorevenpureed.Tryusingastrawtogainbettercontrolofliquidsenteringyourmouththiswillensuresmallandcontrolledsips.Iffoodiscaughtinyourthroattrycoughinghardtwicefollowedbyonehardeffortfulswallow.Trytuckingyourchintoyourchestjustbeforeyouswallow.Ithelpswidenthebackofyourthroatandallowsfoodandpillstopasseasily.Movingyourchinjustone-halfinchclosesofftheairwayspreventingfoodandliquidfromgoingintoyourrespiratorytract.Considerthickeningyourliquidsasformanypeoplethinliquidstendtogoquicklydownthewrongwaycausingcoughingandthroatclearing.TherearemanydifferentthickenerssoitisimportanttoconsultwithaSLPornutritionisttofindoutwhichoptionisbestforyou.Whenaddedtoliquidsthickenerscanhelpimproveswallowingsafetyandreducetheriskaspiration.TakeasymptominventoryandthinkabouthowyoufeelbeforemealtimeandifyourMSsymptomsworsenataparticulartimeofday.RememberfatiguewillcontributetoswallowingdifficultysobemindfulofheatintoleranceasoverheatingcanaggravateallMSsymptoms.34MSFocusWinter2014TipsforSafeandEasySwallowing 35MSFocusWinter2014MarissaA.BarreraistheownerofNewYorkNeurogenicSpeech-LanguagePathologyandco-owneroftheAspireCenterforHealthWellness.Sheisalicensedspeech-languagepathologistamultiplesclerosiscertifiedspecialistandprofessorofacquiredmotorspeechandswallowingdisorders.ShespecializesintheuseofneuromuscularreeducationandservesasanationaltraininginstructorforGuardianNMEStherapy.AnavidsupporteroftelehealthMarissaprovidestherapytopatientsacrosstheglobeviatheinternet.HavequestionsContactMarissaatMBarreranyneuroslp.comor212.453.0036.MichaelaA.MedvedisabilingualRussian-EnglishSpeech-LanguagePathologistwhoworkswithavarietyofpopulationsincludingchildrenwithautismandpervasivedevelopmentaldisordersheadandneckcancerpatientsaswellasindividualswithmultiplesclerosisParkinsonsdiseaseandtraumaticbraininjuries.InadditiontoperformingtherapywithintheprivatepracticefacilitiesMichaelahasbeentravelingwithMarissatoco-lectureontheuseofGuardianTherapyforthetreatmentofdysphagia.MarissaA.BarreraMSMPhilMSCSCCC-SLPOwnerNewYorkNeurogenicSLPandTheAspireCenterforHealthWellnessMultipleSclerosisCertifiedSpecialistMichaelaA.MedvedMATSSLDCCC-SLPNewYorkNeurogenicSLPandTheAspireCenterforHealthWellnessHavequestionsContactMarissaatMBarreranyneuroslp.comor212.453.0036. MSFocusWinter201436LeeSilpeSincemydiagnosisIhavestartedwriting.Iamnowmorethanhalfwaydonewithwritingmyfirstnovel.MichelleSpanjerIfindifadrawmyMSproblemscomeclearerandIcanfocusmoreongettingbetter.IknowthereisnomagicpillandthingsthatworkforonepersondontworkforanotherbutthroughmyartIcangetawayforalittlewhileandIseemtothinkbetter.EmilTorresGotoYouTubeandsearchforEmilTorres.MysongsbeginwithTimeforFun.KaraHartwellRaudenbushIstartedacompany.Ivebeenaphotographerforover25years.WhenIwasdiagnosedin08IwonderedwhatIwoulddoifIweretobecomedisabledbythedisease.ThebasicideaisaDIYphotographystudio.Customersusemybackgroundspropsandlightingandwithsomeguidancefromthisoldseasonedprotheytakeamazingphotographs.TiffanyJaideHightowerSohaveIhavecometotermswithonethingsofarearlythismorningTherightsideofmybraincontrolsmostcreativityisstillworkingjustfinebutmanytimesitseemsMShasmadescrambledeggswithmostoftheleftside.LOL.WiththatbeingsaidpleasesupportCOMPLAISANTfromthecreativemindofanMSsurvivor.www.complaisantthefeaturefilm.comErikaBolinIcannolongersculptbutwentbacktothecamera.IdiscoveredIdowonderfulpeopleshotsandhavedoneseveralfamilyportraitsandaweddingforfriends.IddonatureagainbutthatshardnowsophotographingthepeoplewasanewtalentIdidnotknowIhadElizabethLoSaccoMassaIthinkMSmakesusallmorecreativeonadailybasisSomanythingsareharderforustodothatwehavetocontinuouslythinkofnewandcreativewaystogetthemdonewithinouroftenchanginglimitations.CreativityisconstantlycomingupwithnewworkaroundsWoodyDentIfadoctorthinksshowerbarswillhelpandifyoucantaffordthemanalternativeistobuybarndoorhandlesfromahardwarestorefor3each.Placethembesidethetoiletifyouneedagrabbartherebesideadoorwayifopeningthedoormakesyoulosebalance.Putthemonwallsbyatuborshowertoholdonto.Makesurescrewsarelongandgointothewoodtobesecure.Thisisacreativeandinexpensivewaytogetagrabbarwhereyouneedone.FacebookFeedbackisyourchancetoshareinadvanceyourexperiencesrelatedtotopicscoveredintheMSFocus.LikeourFacebookpageatwww.facebook.comMultipleSclerosisFoundationandwatchforournextFacebookFeedbackpost.InspiredbySusanTrachmanscreativeuseofhermedicationmaterialsthequestionweaskedforthiseditionofFacebookFeedbackisHashavingMSinspiredyoutobecomemorecreativeHowdoyouexpressyourcreativityandhowhaveyoubenefittedfromit 37MSFocusWinter2014MSCountsisourthemefor2014NationalMultipleSclerosisEducationandAwarenessMonthNMSEAMinMarch.AsthoseintheMScommunityknowtheeffectsofmultiplesclerosisonindividualstheirlovedonesandsocietycanbepro-foundyesMScounts.ThatswhyitsimportantforthosewithMStospeakupandbecountedbyeducatingothersaboutMSparticipatinginfundraisingactivitiesorbecominganadvocate.ThosewhohaveMSmayalsoconsiderparticipatingintheNorthAmericanResearchCommitteeonMultipleSclerosisNARCOMSaglobalregistryforMSresearchtreatmentandeducation.Formoreinformationgotohttpnarcoms.orgorcalltoll-freeat1-800-253-7884.ThereisstrengthinnumbersDuringthisAwarenessMonthandbeyondletsgrowstrongertogether.BecountedandletothersknowthatMSCounts.2014NationalMultipleSclerosisEducationandAwarenessMonthWhatIsNationalMSEducationandAwarenessMonthNationalMSEducationandAwarenessMonthisaneffortbytheMultipleSclerosisFoundationMSFtoraisethepublicsawarenessofmultiplesclerosisMS.ThevitalgoalsofthiscampaignaretopromoteanunderstandingofthescopeofthisdiseaseandtoassistthosewithMSinmakingeducateddecisionsabouttheirhealth-care.EffortstoraiseawarenessofMStakeplaceacrossthecountry.AwarenessKitsandinstructionsareavailablefromtheMSFforthosewhowishtobecomeinvolvedintheeffort.AnyoneaffectedbyorinterestedinlearningmoreaboutMSisinvitedtoparticipateinactivitiesandtobroadentheirunderstandingofMSthroughoutthemonth.AllMSorganizationsareencouragedtoparticipate.TolearnmoreortoreceiveaMSAwarenessKitpleasecall888-MSFOCUS673-6287orvisitwww.msfocus.org.MSCounts MSFocusWinter201438RulesandDisclaimersThecontestisopentolegalresidentsoftheUnitedStateswhoare21yearsofageorolderatthetimethecontestcommencesandcanshowcurrentdiagnosisofhavingmultiplesclerosisbyaneurologistlicensedintheUnitedStates.DeadlineforentriesismidnightApril15th.ThewinnerswillbenotifiedbyMay15th.Onlyoneentryperpersonwillbeaccepted.Prizeisnon-transferablenon-refundableandnotexchangeableforcashorotherprizes.Ifaselectedwinnercannotbecontactedisineligibleorfailstoclaimaprizeanalternativewinnerwillbeselected.Participantsmustconsenttotheuseoftheirnamesphotosandlikenessesforpublicityandcommercialpurposeswithoutfurthercompensation.EmployeesfamiliesandfriendsoftheMultipleSclerosisFoundationMSFareineligibleforthecontest.MSFanditsemployeesarenotresponsibleforandshallnotbeliableforlatelostdelayeddamagedmisdirectedincompleteillegibleorunintelligibleentriesanyconditioncausedbyeventsbeyondthecontrolofMSFthatmaycausethecontesttobedisruptedorcorruptedanyinjurieslossesordamagesofanykindcausedbytheprizeorresultingfromacceptancepossessionoruseoftheprizeorfromparticipationinthecontestoranyprintingortypographicalerrorsinanymaterialsassociatedwiththecontest.AllsubmissionsofwrittenandorspokenmaterialsvideosandpicturesbecomepropertyoftheMSF.Personalinformationprovidedbycontestantsuchasnameaddressphoneandemailaddresseswillnotbesoldorsharedwithanythirdparty.Thisinformationistreatedasconfidentialandonlyusedasoutlinedinthisdisclaimer.MSFatitssolediscretionwilldeterminewinners.Byenteringthiscontestyouagreetoallthetermsandconditions.2014NMSEAMInitiativeMSAwarenessMakeitCountisthenameofour2014NMSEAMinitiativeacontesttoseewhocanstagethelargestawarenessactivity.ToparticipateyoullneedthreethingsacamerastillorvideolotsofpeoplewearingthecolororangeandahomemadesignthatsaysSUPPORTTHEMULTIPLESCLEROSISFOUNDATIONBECAUSEMSCOUNTSThephotothatincludesthemostpeopledontforgettowearorangeanddisplaythesignwinsthegrandprizeatabletInadditionfiveentriesdrawnatrandomwillwin50giftcards.BecreativeAskyourschoolorcongregationorfavoritesocialclubtohelp.ItsagreatwaytospreadawarenessandeducateothersaboutMS.WerecountingonyouEntriescanbeintheformofavideodigitalphotographwithhighresolutionandsizeofatleast400Korprintedphotograph.Submityourentrybyemailtoawarenessmsfocus.orgorbymailtoNMSEAM6520N.AndrewsAve.Ft.LauderdaleFL33309.Besuretoincludeyournameaddressemailaddressifyouhaveoneandphonenumberfordayandevening. MSFocusWinter201439ThisspringtheMSFwillchoosepeoplewithMSfromaroundthecountrytoserveasambassadors.ThesepeoplewillbecomeleadersintheMScommunitybyRepresentingtheMSFintheirlocalcommunity.AttendinglocalandregionalMSFevents.Speakingatsupportgroupsandhealthfairs.ParticipatinginpublicoutreachandmoreSelecteeswillhavethechancetoparticipateinleadershiptrainingtohelpthembecomeadvocatesforMSawarenessandworkcloselywiththeMSFtohelpmeettheiradvocacygoals.SotellushowyouwouldgetthewordoutBecreativewriteanessayrecordavideoincludephotosordoaslideshowpresentation.Applicationscanincludeanessayvideoormixed-mediapresentation.Essaysmustbe1000wordsorless.Videosarelimitedtofiveminutes.PhotosvideosessaysandothermaterialssubmittedtotheMSFwillnotbereturned.Entriesmustbepostmarkedortime-stampedbyApril152014.AmbassadorsgranttheMSFtherighttousetheirnameandphotographinconnectionwiththisprogram.AmbassadorsmaybeaskedbutarenotobligatedtotravelwithintheirregiontoattendMSFprograms.AmbassadorsmaybeaskedbutarenotobligatedtospeakwithmembersofthemediaaboutMS.OfficialGuidelinesEntriesmustmeetthefollowingcriteria 40MSFocusWinter2014MSFAMBASSADORENTRYFORMName________________________________________________________________________Address______________________________________________________________________City_______________________________State__________________Zip______________DayPhone__________________________AlternatePhone_________________________EmailAddress________________________________________________________________AreyoucomfortabletalkingaboutyourpersonalexperiencewithMSKYesKNoAreyounoworhaveyoubeeninthepastaspokepersonforaKYesKNopharmaceuticalcompanyoranotherMSorganizationIfyespleaseindicateforwhomyouserved_____________________________________AreyouwillingtotraveltoattendMSFeventsanddoyouhaveKYesKNoaccesstotransportationtodosoPleaseattachthisformtoyourentry.YoucanenterthecontestthreewaysKEssayLimitof1000wordsorfewer.KVideoPresentationLimitoffiveminutesorless.KMultimediaPresentationSlideshowpresentationusingtextpicturesandorsound.BeascreativeasyoulikebutyourentrymustanswerthefollowingquestionsAWhydoyouwanttobeaMSFAmbassadorBHowhasMSaffectedyourlifeonadailybasisCWhatpastMSawarenessactivitieshaveyouparticipatedinDWhatisthemostimportantmessagetogetoutaboutMSandhowwouldyoudoitEntrieswillbeacceptedthroughthemailandonline.Bothmustbereceivedortime-stampedbyApril152014.Seewww.msfocus.orgforinstructionsforsubmittingyourapplicationonline.VideoentrieswillbeacceptedinvideoorDVDformatormaybeuploadedtotheMSFonwww.youtube.comuserMSFstaffasavideoresponsetothecallforentries.MultimediapresentationsmaybesubmittedasPowerPointfilesorauto-executablefilesonCDorDVD.SelecteeswillbenotifiedbyMay152014.MailtoTheMultipleSclerosisFoundationAwarenessCommittee6520NorthAndrewsAve.FortLauderdaleFL33309Additionalapplicationscanbeobtainedbycalling1-888-MSFOCUS673-6287. COOLINGPROGRAMCOOLINGPROGRAMQUALIFICATIONAPPLICATIONPleasePrintLastName______________________________________FirstName_____________________________Street___________________________________________________________________Apt.___________City______________________________County_______________State___________Zip___________Phone_______________________Email___________________________DateofBirth_____________AlternateContact_______________________Relationship______________Phone_______________PhysiciansName___________________________________________________Phone_______________WhenwereyoudiagnosedwithMS____________Currentmajorsymptoms______________________________________________________________________________________________________________DoyouoryourspousehavemedicalinsuranceIMedicareIMedicaidIPrivatecarrierMonthlygrossincome________Monthlyexpenses_________Disposableincome________ChooseOneOptionOnly____ColdPackVestSizeIOnesizefitsall-ColorINavyITan____ColdPackUndervestSizeIOnesizefitsall-ColorITan____EvaporativeCoolingKitfullvesthatnecktiewristbandsBlueonly.SizeISIMILIXLIXXL____AccessoryPackagehatnecktiewristbandsHatSizeISIMILIXL-ColorINavyIKhaki____StaCoolVestIXSISIMILIXLIXXL-ColorITanIBlackIGrayIIherebyreleaseandholdtheMultipleSclerosisFoundationInc.harmlessfromagainstandinrespectofallclaimsinjuriesactionsdemandssuitslossesliabilityorotherdamagesthatmaybeincurredasaresultofacceptinggoodsorservices.PatientSignature____________________________________Date___________TheMSFCoolingProgramoffersavarietyoffreeitemsincludingbandanasnecktieshatswristbandsandtwotypesofcoolingveststohelpyougainrelieffromheat-inducedsymptomsandmaintainyouractivelifestyle.Our2014programbeginsonFebruary1andcontinuesthroughJune1.SendcompletedapplicationstoMultipleSclerosisFoundationCoolingProgram6520NorthAndrewsAvenueFortLauderdaleFL33309.Allapplicationsareconfidentialandwillbereviewedbythegrantcommittee.Applicationscanalsobesubmittedonlineatwww.msfocus.org.Foradditionalapplicationscall1-888-MSFOCUS673-6287.FOROFFICEUSEONLYIVHIVFIHINTBIPhnw 42MSFocusWinter2014ByEllenWhippleGuthriePharm.D.UpdatesbythePharmacistspotlightsthelatestsignificantresearchonMSmedicationsaswellaspharmaceuticalissuessignificanttoMScare.Noendorsementisimplied.InMay2013BiogenIdecsubmittedaBiologicsLicenseApplicationBLAtotheUnitedStatesFoodandDrugAdministrationFDAfortheapprovalofPlegridyapegylatedlong-actingsubcutaneouslySQadministeredinterferonbeta-1aproductusedtotreattherelapsing-remittingformofmultiplesclerosis.TheregulatorysubmissionwasbasedonresultsfromtheADVANCEclinicaltrial.InthistrialPlegridywasaseffectiveasthecurrentlyapprovedinterferonbeta-1aproductsbutwasadministeredSQonlyonceeverytwoweeksoronceeveryfourweeks.TheFDAapprovalofPlegridywhichisanticipatedinearly2014isveryexcitingbecauseitcouldofferpatientswiththerelapsing-remittingformofmultiplesclerosisanewmoreconvenienttreatmentoptionaccordingtoJacquelynBainbridgePharm.D.FCCPaprofessorattheUniversityofColoradoSkaggsSchoolofPharmacyandPharmaceuticalSciencesDepartmentofClinicalPharmacyandNeurology.ADVANCEClinicalTrialThephaseIIImulti-centerrandomizeddouble-blindedplacebo-controlledADVANCEclinicaltrialevaluatedtheefficacyandsafetyofPlegridyin1516peoplewiththerelapsing-remittingformofmultiplesclerosis.InthistrialparticipantsweretreatedwithPlegridy125mcgSQeverytwoweeksPlegridy125mcgSQeveryfourweeksorplacebo.TheprimaryefficacyendpointinthistrialwasannualizedrelapserateARRsecondaryendpointsincludeddisabilityassessmentsusingExpandedDisabilityStatusScaleEDSSpercentageofparticipantswhorelapsedandmagneticresonanceimagingMRIassessments.AfteroneyeartreatmentwithPlegridysuccessfullymetalloftheprimaryandsecondaryendpoints.BothdosesofPlegridydecreasedtheARRandthenumberofnewornewlyenlargingT2lesionscomparedtoplacebo.PlegridyadministeredeverytwoweekshoweverwassuperiortoPlegridyadministeredeveryfourweekswithregardtothenumberofgadolinium-enhancinglesions.TheoccurrenceofneutralizingantibodieswaslowforbothdosesofPlegridy.ThemostcommonlyreportedsideeffectswithPlegridywererednessattheinjectionUpdateonPlegridy MSFocusWinter201443siteandflu-likesicknessesandthemostcommonlyreportedserioussideeffectswereinfections.OverallthesafetyofPlegridywassimilaracrossbothdosingregimensandwasconsistentwiththecurrentlyapprovedinterferonbeta-1aproducts.AboutPlegridyPlegridycontainspegylatedinterferonbeta-1a.Thepegylatedcomponentextendsthehalf-lifeofinterferonbeta-1aandprolongsitsexposureinthebody.Dr.Bainbridgeexplainedthatotherpegylatedinterferonproductsarecurrentlyavailabletotreatotherconditions.Allofthepegylatedinterferonproductsofferpatientsmoreconveniencesincetheyrequirealessfrequentdosingschedule.AspokespersonforBiogenIdecnotedthatPlegridywillbedispensedwithapre-filledsyringeandasingle-doseauto-injector.Thistechnologywillenablepatientstodosetitratethemedicationupwards.Forthefirstdosepatientswillreceiveone-quarterofthedosefortheseconddosetheywillreceiveonehalfofthedoseforthethirddosetheywillreceivethree-fourthsofthedoseandthereaftertheywillreceivethefulldose.ImprovedComplianceExpectedWithPlegridyRecentdatasuggestthatasfewas27percentofpatientsperyeartaketheirinterferonbetaproductsasprescribed.Inthisstudypatientswhowereadherenttendedtohavelowerriskofrelapsesoverthreeyearsanddecreasedhealthcarecostsbothdirectandindirectthannon-adherentpatients.Oneofthemostcommonreasonscitedfornon-adherenceareinjectionsitereactionsandflu-likesymptoms.SincePlegridywillbeadministeredeverytwoweeksoreveryfourweekstheseproblemsshouldbelessened.WhenapprovedbytheFDAPlegridywillbethefirstlong-actinginterferonbetaproductonthemarket.Plegridyshouldofferpatientswithrelapsing-remittingmultiplesclerosisanewmoreconvenienttreatmentoptionwithoutadditionalsideeffects.FormoreinformationonPlegridycontactBiogenIdecMedicalAffairsDepartmentat800-456-2255.ForinformationonenrollingoractiveclinicaltrialswithPlegridyoranyotherproductformultiplesclerosisgotowww.clinicaltrials.gov.EllenGuthriehasbeenamedicaladvisorwiththeMSFsince2002.SheisaclinicalpharmacistemployedasamedicalaffairsspecialistaswellasanAssistantClinicalProfessorattheUniversityofGeorgia.ShereceivedherdoctorateofpharmacydegreefromtheUniversityofGeorgiaCollegein1994andwaslateremployedattheShepherdCenterandChildrensHealthcareofAtlanta.EllenisanactivememberoftheGeorgiaSocietyofHealthSystemPharmacists.ShehasalsoservedonthePharmacyAdvisoryCommitteefortheDepartmentofCommunityandHealth. MSFocusWinter201444Theever-changinglandscapeoffederalregulationsmedicaltechnologyandinsurancecoveragecanmakeonesheadspin.Thiscolumnspotlightsgovernmentresourcesavailabletoqualifyingpeoplewhohavemultiplesclerosisandotherchronicillnesses.SUPPLEMENTALNUTRITIONASSISTANCEPROGRAMSNAPTheSupplementalNutritionAssistanceProgramSNAPformerlyknownasfoodstampshelpseligiblelow-incomepeoplebuyfoodatauthorizedretailfoodstores.AlthoughSNAPisafederalgovernmentprogramitisrunbystateorlocalagencies.Toqualifyyourhouseholdcannothavemorethanapproximately2000inresourcesthingsyouown.Howeverifyourhouseholdincludesapersonage60orolderorwhoisdisabledthemaximummightbeashighas3000.Householdsmustmeetanincomelimitbutcertainitemsforexampleyourhomeandlandcanbesubtractedfromyourincome.Yourhouseholdmayalsoqualifyforotherincomeexclusionssinceincomeceilingsvarybyhouseholdsizeandmaychangeeachyear.IfyouarereceivingSocialSecurityDisabilityInsuranceSSDIandalsoqualifyforSNAPbenefitsbecauseyouhavelimitedincomeandresourcesyoucanreceivemonetarybenefitsunderSNAP.IfyourincomeandresourcesaretoogreatyouwillnotbeeligibleforSNAPbenefitsevenifyouarereceivingSSDI.SNAPdoeshoweverhavesomespecialrulesforpeoplewhoaredisabled.IfyouarereceivingSSDIyouwillbeconsidereddisabledforpurposesofSNAPandyoumaybeabletodeductsomeofyourmedicalexpensesfromyourincome.FormoreabouttheSNAPeligibilitycriteriaandhowtoapplyforbenefitsseetheSNAPwebsiteathttpwww.fns.usda.govsnapsupplemental-nutrition-assistance-program-snapSNAPapplicationsareavailableatanySocialSecurityoffice.IfyouoranyoneinyourhouseholdisapplyingfororalreadyreceivingSSIpaymentsanySocialSecurityofficewillhelpyoufillouttheSNAPapplicationandsendittothelocalSNAPofficeforyou.AllothersincludingthoseapplyingfororgettingonlySocialSecuritymusttakeorsendtheirSNAPapplicationstothelocalSNAPofficeortoanySocialSecurityoffice.YoucanfindouthowmuchyoumaybeabletogetthroughtheonlineSNAPPre-ScreeningEligibilityToolathttpwww.snap-step1.usda.govfns 46MSFocusWinter2014ByJoanneFortunatoIntheworldofinformationtechnologyanapplicationalsoknownasanappisacomputerprogramdesignedtohelppeopleperformanactivity.ItcanrunontheInternetonadesktopcomputeronasmartphoneoronanotherelectronicdevice.Thisarticleaddressesappsfortablets.ThereareseveralplacesyoucanfindappsforyourparticulartabletmosttabletscomepreloadedwiththefollowingappscontactscalendarInternetbrowsernotesemailmusicplayerandclock.Manyotherappscanbefoundinanappstore.IfyouareusinganAppletabletthereisaproprietaryappstore.TheprimaryappstoreforAndroidistheGooglePlayStore.HoweverunlikeAppleproductsAndroidappscanalsobepurchasedfromAmazonattheKindleStoreandBarnesandNobleattheNookappstore.Mostappsrangeinpricefromfreetoabout10.Beawarethatmanyappsthatclaimtobefreearelimitedunlessyoupurchaseothermodules.PreloadedAppsSeveralpreloadedappsareexcellentorganizationaltoolsespeciallyforpeoplewithadebilitatingdiseasesuchasMS.Thecontactappthatcomeswithatabletisgreatfororganizingallyourphonenumbersaddressesandotherinformationsuchasemailaddressandwebsites.Thisisespeciallytrueforstoringdoctorsinformation.Whilethecalendarappisgreatforkeepingappointmentdatestwooftenoverlookedcalendarsfunctionsarecolorcodingandsearchingviathetypeofappointment.Thenoteappisusefulforstoringnecessaryinformationsuchasalistofmedicinesanddoctornotesbeforeandafteranappointment.ExploringthepreloadedappsonyourtabletcanleadyoutodiscovermedicalandentertainmentpossibilitiesthatyouprobablyneverevenimaginedMSAppsSinceMScanappearverydifferentlyineachindividualitisusefulthatthereareappsthatrelatetocommonissuesaffectingmanypeoplewithMSandthosethatrelatetospecificmedicationsandorspecificissuesfordifferenttypesofthedisease.Someothergreatappsandresourcescanbefoundonwww.healthline.com.JusttypeMSappsinthesearchboxandcheckoutthemanyotherappsandresources.GeneralAppsMSAAMultipleSclerosisSelf-CareManagerAndroidAppleByRingfulLLCMyMSManageristheMultipleSclerosisAssociationofAmericasMSAAsManageMSwiththeHelpofApps 47MSFocusWinter2014mobilephoneapplicationprovidedfreeofchargetoindividualswithMSortheircarepartnertouseontheiriPhoneiPadiPodtouchorAndroidmobilephonedevice.DevelopedinconjunctionwithRingfulHealththisappforMSoffersindividualsaconvenientandeffectivetooltomanagetheever-changingcourseofthedisease.WebMDAppleAndroidThisappfromtheWebMDsiteisoneofthemajorresourcesformedicalinformationontheweb.WhileitisnotspecificjusttoMSintheMSsectionyouwillfindpracticablereliableinformationtohelpyouunderstandandtreatMS.YouwillalsofindtipsandsuggestionsforahealthylifestylethatwhiletheyarenotspecifictoMSareveryeasytoimplementandfollow.Rememberyoucanalsoaccessgeneralinformationthroughyourtabletsinternetbrowser.ManyMSorganizationsmaintainrobustwebsiteswithinformationaboutresearchsymptomreliefandmanymoretopicsrelatedtoMS.ThesesitesarealsoagreatwaytonetworkwithotherswithavestedinterestinlifewithMS.TheMSFwebsitewww.msfocus.orgisanexampleofsuchasite.TrackingMedicationInjectionsHipShotAppleHipShotisverysimple.Youareaskedforlocationmethodnotesanddatetime.Theinjectionsaremarkedinasimplegraphic.Youcanemailahistoryofshotstoanyoneincludingyourselfandanymedicalpersonnelyouchoose.Thiswouldbeusefulforprintingaswellanditisoneofthefewsitesthathavethisoption.InjectionTracker3DAppleIfkeepingtrackvisuallyisimportanttoyouthenthisappisgreat.Youtrackandmarkinjectionsona3Dgraphic.Otherthanthevisualsthisappdoesnotofferanyadvantagesovertheothersthatarelisted.MedNotesTPAndroidThisisoneofveryfewfreeAndroidappsfortrackingyourinjections.Itisverybasicbutfunctional.Themarkedinjectionsitesareveryspecific.Youaddnotesandadatebutnotmuchelse.IfyouhaveanAndroiddeviceandneedsomethingeasyandfreethisisareasonableoption.SummaryIntermsofpreloadedappstheAndroidandAppledevicesarealmostthesame.WhileyoumaynotfindasmanyspecificappsforAndroidthegeneralappsinthisarticlearetwoofthebestMSappsyouwillfind.ItisonlyamatteroftimebeforetheAndroidmarketcatchesup.Itisgettingbetteronadailybasis.Therearemanyotherappsthatareveryusefulforpeoplewithdisabilities.ThescopeofthisarticlewastogiveabasicoverviewofappsspecificallywiththeMSpatientinmind.Onceyouarecomfortablewithusingappstaketimetoexploretheworldofpossibilities.JoanneFortunatoB.S.M.A.isaretiredcomputertechnologyteacherinTroyN.Y.ShehasamastersdegreeinEducationandhasbeenteachingtechnologytoteachersandstudentsfor30years.ShehaspublishedseveralarticlesandbooksoneducationalcomputertechnologyincludingseveralarticleswiththeInternationalSocietyforEducationISTE.ShewasdiagnosedwithMSin2006andusestechnologytoaidincopingwiththemanydifficultiesthatMScanpresent.Sheisexcitedtosharethisinformationwithothersthatdealwiththesameandmanyotherissuesonadailybasis. 48MSFocusWinter2014Oureducationalprogramspresentedthroughthefallandintoearlywinterhigh-lightedthelatestnewsandresearchtohelpyoulivewellwithMS.ApopulartopicpresentedbyseveraldifferentneurologistsemphasizedtheimportanceofadheringtoyourMSdisease-modifyingtherapy.Inadditiontolearningthebenefitsofmaintainingaregulardosingscheduleattendeeslearnedaboutcommonobstaclestoadherenceandhowtoovercomethem.OtherprogramsemphasizedissuespertainingprimarilytowomenwithMS.ThoseattendingaWomensMSHealthFairinVirginiaBeachVa.heardadvicefromatrioofexpertsaMS-certifiednurseadieticianandaphysicaltherapist.AprograminTampaFla.focusedonthechallengesofmanagingMSinwomenbetweentheagesof20and45.HerearesomeofourmostrecentstopsOntheRoad.Oct.19thTheVillagesFla.ManagingMSRelapsesKalinaSandersM.D.AssociateProfessorofNeurologyattheUniversityofFloridasShandsJacksonvilleMSCenterOct.23rdNaplesFla.TheImportanceofAdheringtoYourMSTherapyMatthewJ.BakerM.D.NeurologistCollierNeurologicSpecialistsNaplesFla.Oct.26thVirginiaBeachVirg.WomensMSHealthFairBarbaraS.BishopMSANP-CMSCNCNRNJenniferVanHornDTMSHSJackieWareingCPTOct.29thNewPortRicheyFla.2ndAnnualMSDoesntHavetoBeSoScaryArthurPedregalM.D.Board-CertifiedNeurologistTampaFla.LawrenceDispartiP.A.DispartiLawGroupHolidayFla.Nov.4thAlbanyGa.TheImportanceofAdheringtoYourMSTherapyMarlaMorganM.D.PhoebeNeurologyAssociatesAlbanyGa.Nov.5thTallahasseeFla.TheImportanceofAdheringtoYourMSTherapyCharlesG.MaitlandM.D.NeurologistTampaFla.Nov.21stFt.MeyersFla.TheImportanceofAdheringtoYourMSTherapyMatthewJ.BakerM.D.NeurologistCollierNeurologicSpecialistsNaplesFla.Dec.20thTampaFla.TheChallengesandConsiderationsofManagingMSinWomenbetweentheAgesof20and45JenniferSmrtkaARNP-BCMSCNSouthFloridaNeurologyAssociatesBocaRatonFla.TofindoutiftheMSFwillbevisitingyourlocalcommunitystayconnectedviaourFacebookpageatwww.facebook.comMultipleSclerosisFoundation.MEEITSALLABOUTMotivatingEducatingEmpoweringMULTIPLESCLEROSISFOUNDATIONMEEITSALLABOUTMotivatingEducatingEmpoweringMULTIPLESCLEROSISFOUNDATION 49MSFocusWinter2014October17thParForetheCauseGolfTournamentinFortLauderdaleFla.MSFsannualParForetheCauseGolfTournamenthassteadilyaddedloyalplayersandsponsorseveryyearandthe10thyearofthispopulareventfilledupfastwith18foursomes.ThisyearscelebritywatchanOlympicteamwithOlympicgoldmedalistboxerHowardDavisJr.FightTimePromotionsCEOpicturedrightandtwo-timetrackandfieldOlympianJaysonJonesSeniorFinancialConsultantforOlympicStarFinancial.PlayedonthesouthcourseoftheFortLauderdaleCountryClubthisyearsthemewasGiveorGetwhichofferedawayforfamilyfriendsandco-workerstosupporttheplayersandaddtotheFoundationsfundraisinggoals.RepresentativesfromPNCBankKINDHealthySnacksandBiogenIdecgreetedgolfersbyhandingoutgoodiebagsandmorningsnacks.AraffletableboastedprizesincludingaPolobyChangeCatalystaTitleistScottyCameronPutteranexclusive2014PUMAgolfbagandmoreenticinggolferstotrytheirluck.HootersgirlswereallsmilestakingphotosandsellingtheticketstoraiseadditionalfundsfortheFoundationsprogramsandservices.TherewereseveralcontestsonthegreenaVistaBMWhole-in-onechallengeatHole12andaLongDrivefundraiseratHole9forachancetowinatwo-nightstayatPebbleBeachLodgeinSanFrancisco.WhilenoonewonthoseconteststherewereplentyofsurprisesthroughoutthecourseincludingTitosVodkacocktailsSouthportRawBarOystersandBlueMartinicocktails.EyeonSouthFloridacapturedthedayshighlightsandinterviewedMSFDevelopmentDirectorNathalieSloanewww.eyeonsouthflorida.compar-fore-byHildyBerger 50MSFocusWinter2014cause.AfterthetournamentgolfersenjoyedaBBQdinnerandawardsceremonywith1stprizetrophiesawardedbyMSFCo-ExecutiveDirectorJulesKuperbergtoGalenAldrichDeonRileySr.DeonRileyJr.andBobWellsnotpictured.October28thRaceforMSAwarenessatDublinMarathon2013EarlierthisyearinJanuaryColoradoresidentIdaJonsenpresentedMSFsDevelopmentDepartmentwithanintriguingoffertoraisefundsandMSawarenessthroughherparticipationinIrelands2013DublinMarathononeofthemajormarathonsworldwide.Idaisanavidrunnerwhohadconqueredmanychallengeshoweverthehardesttestsheeverfacedhadnothingtodowithatrackortimeclock.InAprilof2012Idas23-year-oldsonJeremywasadmittedtotheemergencyroomafterfallingdownathomehourslaterhecouldnotwalkorsitwithoutassistanceandbeganexhibitingmentalconfusion.ThoughhewasinitiallydiagnosedwithMSitwaseventuallydeterminedthathesufferedfromarareconditioncalledAPMPPE.FollowinganewtreatmentregimenmonthsofrehabandlotsofsupportJeremymadeanalmostfullrecovery.FollowingJeremysrecuperationIdaandherhusbandEricorganizedalettercampaignaskingfamilyfriendsandcolleaguestodonatetotheMSF.Ihavealwaysusedrunningtohelpmesolveproblemsandenjoylifeshewrotecitingherparticipationinthe34thDublinMarathonastheimpetusforpromotingMSawareness.AndonOctober28thIdatookherplaceatthestartofthe26.2mileracethroughthestreetsofIrelandscapitalandlargestcity.TheJonsensarebackfromtheirtriptotheEmeraldIsleandhavemuchtobeproudof.NotonlydidIdalogaveryimpressivetimeendingtherace7thinheragegroupbuttheirfundraisingeffortsraised8200fortheMSFAccordingtotheDublinMarathonweb-siteIdaplaced4130amongmorethan14600registeredrunnersbutshesdefinitely1inourbook 51MSFocusWinter2014September7thAriseandWalkForHopeWalkathoninClintonN.C.OrganizedbyDorcasBeattywiththecooperationofMt.PleasantMissionaryBaptistChurchMinistriesthisinspiringfundraisingeventraised1600fortheFoundation.IamabelieverinthecommunitythatIliveinDorcaswroteafterwards.AmazingpeopleawesomegiversThereisprideinknowingyouarehelpingtogetimportantprogramsliketheMSFthemoneytheyneed.DuringtheeventaspecialloveandinmemoryofformysisterMrs.MarciaC.MillswhodiedfromcomplicationsfromMSin2011andaspecialshoutouttomytwocousinsthatarelivingwithMSweregiven.UntilnextyearrememberIhaveMSbutMSdoesnothavemeSeptember9th17thKUTankSaleinLawrenceKansasUniversityofKansasSchoolofPharmacystudentLaurenEdwardscreatedacustomizedKUtankshirttosellinhonorofaclosefamilymemberwithMSraisingatotalof940fortheMSF.IknowthatmanyorganizationsraisemoneyforresearchbutIwanttorecognizeonethatfocusesonthosewhocurrentlysufferfromthediseaseshesaid.September14th1stAnnualHemingwayEstatesKeepItMovinCookoutinLorisS.CFriendsMinesiaGoreOctaviaCapersandJenniferLynchorganizedaterrificfun-filleddayandraised1115fortheMSF.Theypurposelynamedthefundraiser1stAnnualwiththeintentionofcreatingatraditionofgivingandenjoymentforyearstocomeHildyBergeristheMSFsFundDevelopmentCoordinator.IfyouareinterestedinplanningafundraisingeventorwouldlikemoreinformationcontacttheMSFFundDevelopmentDepartmentat800-225-6495orsendanemailtohildymsfocus.org. 52MSFocusWinter2014OnDecember192013morethan200menandwomenmadetheirwaytothe4thflooroftheiconicRitz-CarltonFortLauderdalewheretheyenjoyedpicturesqueoceanviews.GreetedbyourwelcomingstafftheywerestepsawayfromglamoroushandbagsincludedinanamazingraffleCalltheGirlsItsTimetoGoShopping.Thepackagefor10girlfriendswascomplimentsofTheColonnadeOutletsatSawgrassMills.AgorgeoussterlingsilvernecklacefromDaoudsFineJewelrywasalsoondisplay.TheballroomwasperfectlysetupandbeautifullydecoratedwithshinysilverwaregiftbagsonallthechairsanddeliciousediblecenterpiecescreatedanddonatedbyJaimeHagefromAllstarGourmetCupcakeFactory.AnaddedeyecandyofCadillacsadornedtheflooraswellManyauctionitemsweregraciouslydonatedforthecauseandvendorscameouttosupporttheThursdayafternoonevent.AnotherfunpartofthecocktailhourwasthePhotoMinglethatsentthepicturesrighttoyourFacebookthankstoLifestylesmagazineMeanwhilebehindthescenesStyleBarDaySpastylistswerepreparingthemodelsandthestaroftheshowMoniqueAbbadiefromteamShakiraonNBCsTheVoice.ReadyforthefashionshowTVcrewsfromFashionOneTVandEyeonSouthFloridastrolledaroundandinterviewedprincipalsfromtheevent.Thankyoutoeveryonewhosupportedusthisyear.FormoreinformationabouttheseeventscontactNathalieSloaneat954.776.6805ornsloanemsfocus.orgMediaInquiriesAdrienneMazzoneTransMediaGroupat561.750.9800FearlessMSFashionLuncheon 53MSFocusWinter2014TAKINGCONTROL2013TAKE20STORIESTakingControlbyJillianKingfordSmithisaninspiringcollectionofstoriesthatdescribethejourneysof15differentpeopleastheystrivetolivewellwithmultiplesclerosis.ThefirstchapterofthebooktellsSmithsstorybeginningwithherdiagnosisandfrustrationasshesearchedforinformationaboutMS.TherewereamillionentriesaboutthetopicbutnothingthatgavemewhatIwaslookingfor.Iwaslookingforsomeonetogivemetheplan.Iwanteditlaidoutforme.Iwasinahospitalsurroundedbyverysmartpeopleandhadthepoweroftheinternetinmyhandsstillnoonecouldtellmeathingsheexplains.LuckilyforSmithhercareerasajournalistwouldhelpherthrough.RecognizingtherewasaneedforpositiveandconstructiveinformationshestartedwritingTakingControltohelpthosenewlydiagnosedwithmultiplesclerosis.ThebookcontainsthestoriesofoveradozenpeoplefromAustraliawhohavebeendiagnosedwithmultiplesclerosisoverthelast30years.SomeofthemarenotablesandothersarejustordinaryAustralians.ReaderswithMSmayidentifywiththestrugglesandsuccessesofthepeoplewhosharetheirstoryandreaderswithoutMSmaygainabetterunderstandingofwhatitisliketolivewiththedisease.AmongthoseyouwillmeetinTakingControlareTimFergusonHeisoneofAustraliasmostrecognizedcomediansandaperformerwhohasmadeitontheworldstage.Timsdiagnosiscameattheheightoffameandhewasforcedtomakesomelife-changingdecisionsabouthisverypubliccareer.PaulPisasaleMayorofIpswichQueenslandhehasbeenlaudedforhisvisionintransformingIpswichintoabustlingcityinitsownright.PauldiscusseshowastrongandpositivemindsetcanpavethewaytolivingsuccessfullywithMS.AlexandraSmithAcommissionedarmyofficerwhosesolemissioninlifewastoservehercountryAlexhadbeenintheArmyforeightyearswhendiagnosedwithMS.Herdiagnosismeantshecouldnolongerdeploysoshehadtomakesomeharddecisionsabouthercareerasanofficer.HayleyDwyerSherelatesherexperiencesdealingwiththestigmaattachedtoMSaswellasthedecisionssheshadtomakewithregardstoplanningapregnancyduringherMStreatments.InadditiontorevealinghowotherscopewithMSthebookcontainsmorethan100tipsonhowtobetternavigatelifewithMSmakingitapracticalaswellasaninspirationalread.ToborrowthisandothertitlescalltheMSFLendingLibraryat1-888-MSFocus673-6287orvisitwww.msfocus.org.ClickonLendingLibraryundertheProgramsandActivitiesheading. MSFocusWinter201454QQ..WhenwereyoudiagnosedwithMSandwhatwasgoingoninyourlifeatthattimeA.A.Iwasdiagnosedin1989.AtthattimeIwasaneducatorteachingcommercialadvertisingandprintingtojuniorsandseniorsatManassasCityHighSchoolinVirginia.LaterIbecameanindependentcontractorforIBM.WewerecalledEISesEducationalInstructionalSpecialists.WhenschoolsystemsbeganpurchasingcomputersandimplementingthemintotheirschoolcurriculumIBMwouldsendmetotheschooltotraintheteachersontheirnewcomputers.Withanewcurriculumforstudentsthiswasthebeginningofcomputersineducation.Thisbecameafull-timepositionformeandIworkedinschoolsfromMarylandallthewaydowntoFlorida.QQ..WhatledyoutoasupportgroupandhowdidjoiningthegrouphelpyouA.A.IjoinedthesupportgroupwhenImovedtoFloridain1997.IthelpedmerealizethatMSdidnottakeovermylife.Itwasjustapartofmylife.IbecameafacilitatorinApril2012.QQ..WhatisthegroupsmissionandhowdoyougoaboutachievingitA.A.TheCapeCoralMSSupportGroupisanethicsandeducationalgroup.WeuseateamapproachtobuildindividualstrengththroughawarenessandeducationaboutMS.WeempowerourselvesthroughresearchingnewmaterialsaboutMSanddiscussingnewissuesatourmonthlymeetings.QQ..WhendidyoudevelopyourcraftingskillsandhowhaveyouusedthoseskillstohelpothersA.A.Ihavealwaysbeenahands-onpersonwhoenjoyscrafting.Whenmyhusbandgavemea7000BrotherEmbroiderysewingmachineIcouldnotusethismachinejusttomakegifts.IfeltIcoulduseittogivebacktotheMScommunityacommunitythatneedstofindacure.TheMSorganizationshavegivensomuchsoweasMSerscanliveabetterlive.SoIstartedSewPrettyCorp.togivebacktotheMScommunityandputthemachinetogooduse.QQ..WhatisthemissionofSewPrettyCorp.A.A.SewPrettyCorp.isanonprofitMeetMarthaHanniganfacilitatoroftheCapeCoralMSSupportGroup.NotonlydoesMarthaworktirelesslytohelpthegroupfulfillitsmissionbutshealsouseshercraftingskillstohelpraisefundsfortheMSF.ThoughtheholidayseasonisabusytimeforMarthashesatdownlongenoughtoanswerquestionsfortheMSFocus. MSFocusWinter201455customsewingandembroiderycompanywhichdonatesallprofitstoMSservicesanddisabledveterans.OperatedbyvolunteerswithMSourmissionisnotoneofcharitybutofeconomicawarenessandempowermentthroughlifeskillsandwork.WeareMSersmultiplesclerosisvolunteersandcaregivers.WehelpotherswithMSfeelandbecomemoreproductivewhilealsogivingbacktothosethathelpus.QQ..WhatkindsofitemsdoyoumakeandsellA.A.SewPrettymakescustomdisabilityaccessoriessuchashandmadesaddlebagstohangonthebackofyourwheelchairandpouchestohangoverthefrontbarofawalker.Ourhandbagsaremadeofdifferentmaterialsandcomeindifferentsizes.Youcanseeouritemsbyvisitingwww.sewpretty.info.QQ..DoyoualsosellitemsmadebyotherorganizationsA.A.WehavepurchaseditemsmadebySouthAfricanwomenwhohavebeensuppressedandareworkingforanon-profitknownasAWAVA.TheyalsomakepursesthatIresellatthecraftshowweparticipatein.QQ..AsSewPrettygrowswhatareyourplansforemployingothersA.A.OncewehaveestablishedsteadyfundsweplantohirethosewithMSthatneedextraincomemakingsurethatwhattheyearnwillfallwithinthedisabilityincomeregulations. 56MSFocusWinter2014ByTimCarrInthe15yearsIvebeenlivingwithmultiplesclerosisIhavehadonebigfearthatonedayIwouldbecomedependentonacanewheelchairorotherdevicetohelpmewalk.AstheyearsgobyIhavebeenmovingcloserandclosertothatreality.OverthepasttwoyearsSharonandIhavebeentravelingalot.Sharonmakessurewhenwemakeourreservationsthattheairlineprovidesawheelchairforme.Sometimesshewillalsogetusaridetoourplaneononeofthoseelectriccartstheyhavecruisingtheairport.ThecartandthewheelchairhavebeenagreatassistanceformebutIjustdontfeelrightusingthem.IcouldgetontheplaneandgothroughsecuritybystandinginlinelikeeverybodyelsebutIdoattimeshavesomedifficultyinmylegsandbackwhiledoingthat.SoIguessthewheelchairisagreathelp.RidingthroughtheairportkindofmakesmefeellikeIamgettingspecialtreatmentIdontdeserve.Alsohavingsomeonepushmetothegatemakesmefeelinadequateandneedy.WhenIrolluptothefrontofthelinetogetontheplanefirstwiththeotherpassengerswatchingIwonderwhattheyarethinking.Forsomeitisobviousastowhytheyareinwheelchairs.ButthatisnotthecasewithmeespeciallywhenIgetuptogothroughthesecurityarealikeeverybodyelse.HoweverIdounderstandwhySharoninsistsIuseawheelchairgettingthroughtheairports.InthepastIhavehadtroublekeepingupwithheraswerushtothegateswithourluggageintow.AtthisstageofmyjourneywithMSwalkingisespeciallydifficultandrunningisoutofthequestion.Standingandsittingforlongperiodscanalsobeaproblem.IhaveadistinctivelimpinmywalkandattimesIamclumsyandwalkintothings.Ithinkthebottomlinehereispride.IamaveryproudpersonwhodoesntthinkIneedanymorehelpthanthenextperson.Ilikemostpeopledontwantspecialtreatmentdoingeverydayactivities.IknowIhaveMSbutitsnotobviousandIliketokeepitthatway.Inasenseusingthewheelchairtakesawaysomeofmymanhood.Ishouldbehaulingluggageandopeningdoorsformywifeaswegothroughtheairportbeingpushedinawheelchairpreventsmefromdoingthat.Butthesametimemywifegetssomereliefnothavingtostandinlonglinesforsecurityandcheck-in.Ialsohavenocontroloverthewheel-chairandImatthemercyofthepersonpushingmealong.HeorshetakesmetoWheelchairWillie MSFocusWinter201457therestroomwhennecessarywhichcanbeawkwardattimes.TheydontgoinwithmebutIfeelIhavetorushandgetoutbecauseIdontwanttokeepthemwaiting.ThenwhenIgettotheendofthetripthepersonhastogetmyluggageandpushmeandtheluggagetotheoutsideandloaditinmyridehome.Soyouseeitisnotjustamatterofpushingmealonginthewheelchair.Therecouldbesomeheavyliftinganddragginginvolvedintheprocess.UsingawheelchairtogetonandofftheairplaneisatemporarysituationsoIguessIcandealwithit.Itisprettyconvenientwhenyouarebroughttotheheadofthelineordonthavetogetinalineatall.IhatecrowdsandifIcanavoidthemIwilltry.SomydaysasWheelchairWilliewillprobablycontinueintheairportsaslongasthisfrustratingillnessiswithme.IvegottothankmywifeandsoulmateSharonforthisandotherMSrelatedsituationsIvehadinmylife.Shewastheonewhomotivatedmetogetahandicappedplacardformycar.SheencouragedmetoapplyfordisabilitywhichIdidreceive.AllwhileIsaidIdontneedthosethings.HoweveronceIgotthosethingstheymademylifemucheasierindealingwiththisdisease.SoIguessthiswheelchairisanotheroneofthosethingsIcanbegratefulforandanotherreasonformetolovemylife-matemoreandmore.1.SutliffMatthewH.PTJonathanM.NaftCPODarleneK.StoughRNJarChiLeeMSSusanaS.ArrigainMAandFrancoisA.TheHipFlexionAssistDeviceHFADHFADimprovedstrengthHFADincreaseddailyactivitylevel.HFADbothGaitTraining.TheHFADIntroducingaPracticalSolutionforHipFlexionWeaknessPleasevisitourwebsiteformoreinformation.ebsPleasevstourwormatonormoreinffTimCarrisaMSFAmbassadorfromSanDiegoCalif.AformertelevisionnewsreporterhecontinuestousehisbroadcastskillstodelivermessagesaboutMStoanyonewhohasaninterestinlearning.HiscommunityawarenesseffortsaboutMSearnedhimrecognitionbyNBC-TVandmanynewspaperarticleshavechronicledhisworkinMSawareness. 58MSFocusWinter2014StudyRefinesGeneticLandscapeofMSScientistshaveidentified48newgeneticvariantsthatinfluencetheriskofdevelopingmultiplesclerosisaccordingtoastudypublishedinthejournalNatureGenetics.TheworkbyscientistsfromtheInternationalMultipleSclerosisGeneticsConsortiumIMSGCnearlydoublesthenumberofknowngeneticriskfactorsforthecondition.ThegenesimplicatedbythenewlyidentifiedassociationsunderlinethecentralroleplayedbytheimmunesysteminthedevelopmentofMSandshowsubstantialoverlapwithgenesknowntobeinvolvedinotherautoimmunediseases.LedbytheUniversityofMiamisMillerSchoolofMedicinesJacobMcCauleyonbehalfoftheIMSGCthestudyrelieduponaninternationalteamof193investigatorsfrom84researchgroupsin13countries.Thepresentstudytakesadvantageofcustom-designedtechnologyknownasImmunoChipahigh-throughputgeno-typingarrayspecificallydesignedtointerrogateatargetedsetofgeneticvariantslinkedtooneormoreauto-immunediseases.IMSGCresearchersusedtheImmuno-ChipplatformtoanalyzetheDNAfrom29300individualswithMSand50794unrelatedhealthycontrolsmakingthisthelargestgeneticsstudyeverperformedforMS.Inadditiontoidentifying48newsusceptibilityvariantsthestudyalsoconfirmedandfurtherrefinedasimilarnumberofpreviouslyidentifiedgeneticassociations.Withthesenewfindingstherearenow110geneticvariantsassociatedwithMS.AlthougheachofthesevariantsindividuallyconfersonlyaverysmallriskofdevelopingMScollectivelytheyexplainapproximately20percentofthegeneticcomponentofthedisease.Byfurtherrefiningthegeneticland-scapeofmultiplesclerosisandidentifyingnovelgeneticassociationsweareclosertobeingabletoidentifythecellularandmolecularprocessesresponsibleforMSandthereforethespecificbiologicaltargetsforfuturedrugtreatmentstrategiesMcCauleysaid.TooMuchSodiumMayIncreaseDiseaseActivitySodiumintakewaspositivelycorrelatedwithriskofincreaseddiseaseactivityinpeoplewithmultiplesclerosisaccordingtoresultsofasmallstudyreportedearlierthismonth.MSNEWSandWhatItMeanstoYouEditorsNoteDr.Throwerscommentarywillresumenextissue. MSFocusWinter201459Eachgramofestimateddailysodiumintakeabovetheaverageina52-patientsamplewasassociatedwithanincreaseof3.65inMRIlesioncountssaidMauricioFarezM.D.Ph.D.ofFundacinparalaLuchacontralasEnfermedadesNeurolgicasdelaInfanciainBuenosAires.AttheannualmeetingfortheEuropeanCommitteeforTreatmentandResearchinMultipleSclerosisDr.Fareztoldattendeesthatpatientswithestimatedsaltintakeclassifiedashighmorethan4.8gdailyshowedrelapseratesthatwere3.95timesgreaterthanthosewithintakeslessthan2gdaily.Farezemphasizedrepeatedlythatthefindingsdidnotprovethathighsaltintakecausedtheincreaseddiseaseactivity.HeacknowledgedthatifthereisacausalrelationshipitpossiblycouldgointhereversedirectionthatpatientswithhighlyactiveMSmayincreasetheirsaltintakeasaresult.Buthesaidhedidnotviewthatasverylikely.AskedbythesessionmoderatorwhatacausalmechanismmightbeFarezsaidpreviousstudieshadsuggestedthathighsaltlevelscanpromoteincreasedinflammatoryactivitythroughoutthebody.Alsohesaiditmayincreasepermeabilityintheblood-brainbarrierwhichcouldcontributetoinflammationinthecentralnervoussystem.Whateversuchamechanismmaybehesaiditdoesnotseemtooccurinperipheralblood.BloodClottingProteinMayBeEarlyIndicationofMSLesionsAproteininvolvedinbloodclottingmaybeanewindicatortohelpdetectmultiplesclerosislesionsbeforesymptomsariseaccordingtopreliminarystudies.Thepresenceoftheclottingproteinthrombinsignalsanearlystageofthediseasewhentheblood-brainbarrierisbreachedandthebrainsimmuneresponseissetintomotion.TheresearchwaspresentedatNeuroscience2013theannualmeetingoftheSocietyforNeuroscienceandtheworldslargestsourceofemergingnewsaboutbrainscienceandhealthOurresearchshowsthisindicatorisapromisingapproachfordetectingMS-likelesionsearlyevenbeforemajorsymptomsappearsaidseniorauthorKaterinaAkassoglouPh.D.oftheGladstoneInstitutesandtheUniversityofCaliforniaSanFrancisco.SuchsensitiveindicatorscouldactasredflagsthatsignalneuroinflammatorychangesinthebrainnotonlyinMSbutalsoinotherdiseasessuchasAlzheimers.TheresearchersfoundthatthrombinusuallyabeneficialproteininvolvedinbloodclottingbuildsupinthecentralnervoussystemasMSprogresses.Thrombinentersinthebraintogetherwithfibrinogenanotherclottingproteinwhentheprotectivebarrierbetweenthebloodandbrainbecomesleaky.Thrombinconvertsthefibrinogentofibrinwhichactivatesthebrainsimmunecellsthatbreakdowntheprotectivemyelinsheaththatsurroundsneuronsinthecentralnervoussystem.Becausethrombinlevelsincreaseasthediseaseprogressestheresearchersconcludethatitcouldbeusedasanearlydetectorofthedisease.Intheirstudiestheresearchersusedamouse modelanddemonstratedthatMSsymptomsincreasedasthrombinlevelsrose.EarlydetectionofMScouldresultinmoresuccessfultreatmentofthedisease.StudyInvestigatesPossibleEnvironmentTriggerforMSAbacteriumthatmaytriggermultiplesclerosishasbeenidentifiedbyaresearchteamfromWeillCornellMedicalCollegeandTheRockefellerUniversity.TheirstudypublishedinPLoSONEisthefirsttoidentifythebacteriumClostridiumC.perfringenstypeBinhumans.ThescientistssaytheirstudyissmallandmustbeexpandedbeforeadefinitiveconnectionbetweenthepathogenandMScanbemadebuttheyalsosaytheirfindingsaresointriguingthattheyhavealreadybeguntoworkonnewtreatmentsforthedisease.Thisbacteriumproducesatoxinthatwenormallythinkhumansneverencounter.ThefactthatweidentifiedthisbacteriuminahumanisimportantenoughbutitistrulysignificantbecausethetoxintargetstheexacttissuesdamagedduringtheacuteMSdiseaseprocesssaythestudysauthors.WorkisunderwaytotestourhypothesisthattheenvironmentaltriggerforMSlayswithinthemicrobiometheecosystemofbacteriathatpopulatesthegastro-intestinaltractandotherbodyhabitatsofMSpatients.ThestudydescribesdiscoveryofC.perfringenstypeBina21-year-oldwomanwhowasexperiencingaflare-upofherMS.ThewomanwaspartoftheHarboringtheInitialTriggerforMSHITMSobservationaltrial.C.perfringensfoundinsoilisoneofthemostcommonbacteriaintheworld.Itisdividedintofivetypes.C.perfringenstypeAiscommonlyfoundinthehumangastrointestinaltractandisbelievedtobelargelyharmless.C.perfringenstypesBandDcarryageneepsilontoxinthatemitsaprotoxinanon-activeprecursorformofthetoxinwhichisturnedintothepotentepsilontoxinwithintheintestinesofgrazinganimals.TheepsilontoxintravelsthroughthebloodtothebrainwhereitdamagesbrainbloodvesselsandmyelintheinsulationprotectingneuronsresultinginMS-likesymptomsintheanimals.ResearcherssaytheydonotknowhowhumansareinfectedwithC.perfringenstypeBorDbuttheyarestudyingpotentialroutesofexposure.Thescientistsarealsointhefirststagesofinvestigatingpotentialtreatmentsagainstthepathogen.MSFocusWinter2014StayCurrentLikeacondensedversionofalltheinformationyougetintheMSFocusfourtimesayeartheMSFYiisafreemonthlyinternetnewsletterdeliveredtoyourinboxfromtheMSF.PackedwithinformationaboutnewresearchupcomingclinicaltrialshealthtipsandnewsfromtheMSFthenewsletterisanotherwaytostayeducatedandempowered.Signupforyourfreesubscriptionatwww.msfocus.org.60 61MSFocusWinter2014Q.Q.WhatkindsofspecialistsshouldIseeformyMSA.A.Multiplesclerosisisamultifactorialdiseasemeaningthatitcancreatemanysymptoms.Thereforeyoushouldideallyhaveateamofspecialiststoaddressalltheindividualfactorsthatyourdiseaseentails.ThisnotonlyincludesaneurologistspecializinginMSbutalsoaninternistwhoisfamiliarwiththediseaseaphysicalandoccupationaltherapisttodealwithmobilityissuesandaspeechlanguagepathologisttoassistwithspeechandswallowingissues.DependingonthespecificsofyourMSyoumayalsoneedanurologistagynecologistapsychiatristasocialworkerandanorthopedist.ThesepeopleshouldbechosenwithspecificconsiderationoftheirknowledgeofMS.Q.Q.WhydoesitseemlikemyDMDisnthelpingmymultipleMSA.A.Sometimesthebenefitsofdisease-modifyingdrugsDMDsarecounteractedbypotentialtolerabilitysideeffectsthatmaymakesomeonefeelliketheirmultiplesclerosissymptomsarenotimproving.ThisiswhyitisimportanttotalktoyourneurologistabouthowyourDMDmakesyoufeelandtodiscussallyouroptions.IfyoustoptakingyourDMDonaregularbasisbutdonttellyourneurologistthenyoumaybemakingtolerabilitysideeffectsmorelikely.Forexampleflu-likesymptomsseemtobeworsewhenyoudonttakethebetainterferonsconsistently.AlsoyouarenottakingadvantageofthebenefitsoffullycontrollingyourMSdiseaseprocess.IfyouarenthavingperfectcontrolofyourMSfromyourDMDdontdespair.Yourneurologistiswellequippedandtrainedtohelpguideyouthroughyouroptions.ThereispresentlynocureforMSyetalltheDMDsarepartiallyeffectiveandthebenefitofstayingonyourcurrentDMDmayoutweightherisksofstoppingitorofswitchingtoanotherDMD.SometimeshoweveryourneurologistmayworkwithyouontransitioningfromoneDMDtoanother.Q.Q.HowcanImakemymultiplesclerosistreatmentinjectionslesspainfulA.A.Tomakeyourmultiplesclerosistreatmentinjectionslesspainfulyouneedtodeveloparoutine.YourshotsneedtobeconsistentlytakenataboutThisQuestionsandAnswerscolumnfeaturesquestionsthathavebeenansweredbytheMSFforSharecareacompanydedicatedtoprovidingthebesthealthandwellnessinformationonline.TheMSFhaspartneredwithSharecaretohelpspreadvitalinformationaboutthediseasetotheglobalMScommunity.VisittheMSFspageonSharecare.comathttpwww.sharecare.comgroupmultiple-sclerosis-foundation. 62MSFocusWinter2014thesametimeofdayforbestresults.Ifyouneedareminderusealarmscalendarsoremailsoraskforhelpfromfamilyandfriends.Ifyouarenervousaboutyourshotfocusonbreathingdeeplyandevenlyortryothertechniquessuchaspanting.Considertryingvisualimageryorplayingsoothingmusic.Ifyougiveyourselfyourshotmanuallytryvaryingtherateofinjection.Somepeoplepreferafastinjectionwhileothersprefertogoslow.Techniqueslikerubbingpinchingorputtingpressureonyourskincanhelptodecreaseinjectionpain.Tryingdifferentbodypositionssuchasstandingwithyourtoespointinginwardforaglutealinjectionmayalsohelp.Ifthingsarentworkingforyoutrysomethingnew.Ifyouareinjectingbyhandconsiderusinganautoinjector.Ifyouhaveproblemswithanautoinjectorconsidermanualinjections.Tryonetipatatime.Keeptrackofyourinjectionsonacalendarandmakenoteoftipsthatworkforyou.HaveyourMSnursewatchasyougiveyourselfyourshotandaskforadvice.Evenifyouhavebeeninjectingyourdisease-modifyingdrugDMDforyearstheremaybenewtechniquestolearn.Bepositive.Trythinkingaboutthebenefitsofyourmedicationeachtimeyouinject.Q.Q.WhatshouldIavoidduringfluseasonifIhaveMSA.A.1Overconsumptionofalcohol.Alcoholcandehydrateyouaswellasinterruptsleep.Bothofthesewilldisruptyourabilitytofighttheillness.2Overconsumptionofrefinedsugar.Whilesugardoesnotfeedanillnessasmanypeoplehavethoughtitdoesdisruptnormalhormonalsignalinglikegrowthfactorinsulinandcortisolallofwhichaffectyourimmunesystem.Eatingsugaralsofillsyourbodywithemptycaloriesthatinsteadshouldbehealthyfruitsvegetablesgrainsandnuts.3Unnecessarymedications.Manypeopleruntotheirdoctoratthefirstsignofillnessandaskforantibiotics.Iftheyaretrulysufferingfromaviruslikethefluthenantibioticswillnothelpandcouldpotentiallyleadtootherillnesslikeayeastinfection.Thesameistrueforover-the-countercoldandflumedicines.Whiletheymayprovidesomesymptomreliefmostdonotaffecttheabilitytorecoverandmayhavetoxiceffectsonliverorkidneys.Moreovermulti-symptomcoldmedicinesmaycontainmedicationsforsymptomsyouarenotexperiencing.Exercisecautionandonlytakethosemedicationsyouneed.Q.Q.WhatissecondarypaininMSA.A.Peoplewithmultiplesclerosiscansufferfrompainthatisnotadirectresultofdemyelinationofnervesorthediseaseprocess.ForexamplepaininMScanbesecondarytospasticityanothercommonsymptomandsuccessfulmanagementofthespasticitymaydecreasetheoccurrenceandintensityofpain.Notsurprisinglypainsecondarytospasticityisbesttreatedwithanti-spasticitymedicationsincludingbaclofenLioresalortizanidineZanaflex.Insomeinstancespainresultingfromspasticitycanbereducedusingover-the-counternonsteroidalanti-inflammatory drugssuchasibuprofenMotrinorAdvilornaproxenAleve.LikewiseMSpatientsexperiencemanyofthesameachesandpainsasdothegeneralpopulationcrampspulledmusclesandosteoporoticpain.ThesetypesofpainsthatarenotspecifictoMSaretreatedthesameinpatientswhohaveanddonothaveMS.Thedisease-modifyingtherapiesarenotadirecttreatmentofMShoweveradherencetotherapywithdisease-modifyingtherapiesisassociatedwithdecreasedprogressionofdiseasewhichinturncanleadtodecreasedoccurrenceandorintensityofMS-relatedpain.Q.Q.WhatcanIdoaboutthepsychologicalaspectsofMSA.A.Mostpeopleassociatemultiplesclerosiswiththephysicaldisabilitythatitcauses.Howevertheresultingemotionaltraumathatoccursduetothelossofmobilityaswellastheveryknowledgethatonehasaprogressiveneurologicconditionforwhichthereiscurrentlynocureoftenresultsinapsychologicalburdenthataddstotheoveralleffectofthedisease.PeoplewithMSwhopayattentiontothisissueeitherthroughindividualorgroupcounselingsupportgroupsorothermeanswillhavetostrugglelesswiththeemotionalburdensassociatedwithMS.Thisenergycaninturnbeutilizedtohelpachieveotherlifegoals.Q.Q.CanItakeBetaseronifIampregnantA.A.IfyoubecomepregnantwhiletakingBetaseronyoushouldstopusingBetaseronimmediatelyandcallyourdoctor.Betaseronmaycauseyoutoloseyourbabymiscarryormaycauseharmtoyourunbornchild.YouandyourdoctorwillneedtodecidewhetherthepotentialbenefitoftakingBetaseronisgreaterthanthepotentialriskstoyourunbornchild.Winter2014MSFocus63Questionscanbealsobeemailedtosupportmsfocus.orgormailedtoMSFocus6520NorthAndrewsAvenueFortLauderdaleFL33309.VisitOurWebsitetwww.HeatReliefDepot.comReceivea10DiscountUseCouponCodeMSFWarmingVestsHandFootWarmersWarmingCushionsHerbalWrapsHeatPacksMoreCoolingVestsNeckWristCoolersFansSunscreensHatsCapsVisorsMistingProductsMoreYourPlaceForPersonalCoolingWarminProductsHEATRELIEFDEPOTOrCallUsTollFree877-879-1450DONATINGYOURUNNEEDEDCARVANORTRUCKCANHELPFIGHTMULTIPLESCLEROSIS800-225-6495800-225-6495MULTIPLESCLEROSISFOUNDATIONTAXDEDUCTIONINYOURGARAGECONVENIENTFREEPICKUPWEDOALLPAPERWORK NONPROFITORG.U.S.POSTAGEPAIDFT.LAUDERDALEFLPERMITNO.2698AreyoumovingPleasenotifyusofyourchangeofaddress.Call888-MSFOCUS673-6287orE-Mailsupportmsfocus.orgChangeServiceRequested6520NorthAndrewsAvenueFortLauderdaleFlorida33309-2132RAND-SCOTIncorporatedMakeanEasytransferwiththeEasyPivotTheEasyPivotPatientLiftisthepatientliftofchoice-EasyPivotEasyPivot401LindenCenterDriveFortCollinsCO80524800-467-7967970-484-7967inforandscot.com2012Rand-ScotInc.ManufacturersofEasyPivotLiftsBye-ByeDecubitiCushionsSaratogaFitnessProductsSpiritCycleFeelbetterforlifewithSpiritCyclewww.RandScot.comSaratogaSpirit690-