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PublicationsManagerTerrySchenkerEditorialCommitteeKaseyMinnisGayFalkowskiKereneNelsonNatalieBlakeJayHassContributingWritersMarissaBenniHildyBergerJoanneFortunatoBettyGibsonEllenGuthriePharm.D.OrhunKantarciM.D.MaryAnnMcCulloughLaurenPenwell-WainesPh.D.PhillipRumrillPh.D.CRCLaraSteplemanPh.D.MitchellSturgeonBenThrowerM.D.AbbeyValvanoPh.D.TALKBACKTALKBACKWeWelcomeTopicSuggestionsForFutureIssues.Yourcommentsabouteachissueareimportanttous.Emailcommentstoeditormsfocus.orgorwritetoEditorMSFocus6520N.AndrewsAvenueFortLauderdaleFL33309CorrectionThehometownofMSFAmbassadorAnnaConnorswasincorrectlyidentifiedintheSummer2013issueofMSFocus.AnnaisfromShrewsburyMass. AsWeSeeIt4MSFMailbox5PSWhatsNew10FacebookFeedback35UpdatesbythePharmacistProgressiveMultifocalLeukoencephalopathy38UncleSamsHelpingHandTakeaBreakwithHelpfromUncleSam40FromtheLibrary42BreakingThroughMS-relatedStigma6AllAboutTremor15YesWeCanMeettheChallengeofTremorinDailyLiving18AWorldofGratitudeforSpecialCaregivers22DoesMSAlwaysProgress29TheInsandOutsofDisclosingMStoOthers32ThankYouALetterofGratitude36MSFocusispublishedquarterlyinenlargedtypeforthebenefitofourreaders.Ifyouwouldpreferanaudioversionpleasecall888-MSFOCUS.Backissuesareavailableonlineatwww.msfocus.org.MSFocusisafreepublicationforindividualswithMStheirfamiliesandothersinterestedinMS.StatementofPurposeThepurposeoftheMultipleSclerosisFoundationspublicationsistoempowerthoseaffectedbyMSwiththeinformationnecessarytomakethemostcompleteandeducateddecisionsconcerningtheirhealthcare.Wedonotadvocateorendorseanyspecifictreatmentshealingmodalitiesorpractitioners.Thematerialpresentedinthispublicationisforinformationalpurposesonly.Forspecificadviceconsultahealthcareprofessional.MSFdoesbelievethateachpersonhastherighttochoosethetreatmentstheyfeelarebestandthereforeactsasasourceofinformationprovidingreferralstolocalresourcesandpartnershipinproblemsolving.MSTech101BenefitsofTabletsforPeoplewithMS45VoicesKnockedUpKnockedDown48MSFOnTheRoad53RegionalEvents54AdvicefromTheJobCoach58MenMS60MSNews62QuestionsAnswers66 4MSFocusFall2013SupportGroupsTheNetworkwithinourNetworkOnecannottracethegrowthoftheMSFsoutreachfromitsearlyyearstoitsroletodayasaleaderinprovidingnationallyaccessibleprogramsandserviceswithoutalsonotingaparallelupwardpathtakenbyournetworkofindependentsupportgroupswhichcurrentlynumber150.Whileourstaffofcaseworkersandvolunteerpeercounselorsworkdiligentlytorespondtonumerousincominginquiriesandpleasforassistanceoursupportgroupleadersandmembersaretherebehindthescenestocomplementthoseeffortsinadifferentbutnolessimportantway.ThegreathumanitarianandphysicianAlbertSchweitzersaidIneveryoneslifeatsometimeourinnerfiregoesout.Itisthenburstintoflamebyanencounterwithanotherhumanbeing.Weshouldallbethankfulforthosepeoplewhorekindletheinnerspirit.Thatpreciselydescribestheroleservedbyournationalsupportgroupnetwork.WhenitcomestochronicdiseasessuchasMSpeopleneedtorealizethattheyarenotalonetheirsituationisprobablynotuniqueandthattheyareamongmanyotherswhohaveencounteredthesameproblems.Thisistrueregardlessofwhethersomeonehasjustbeendiagnosedorhasbeenimpactedforyears.Becomingawareofthiscanoftenbeatremendousreliefandacriticalfirststeptowardscopingandovercomingadversity.OursupportgroupnetworkisanintegralpartofourcoremissiontoservetheMScommunity-at-large.Wemakevariousresourcesavailabletohelpensuretheviabilityandgrowthofthesegroups.AmongtheseisauniquefreepublicationaptlynamedSupportGroupNews.Thisnewsletterprovidesinformationaboutindividualgroupactivitiestoinspiremotivateandactasanorganizationallink.SurprisinglytherearestillmanyMSerswhoareunaffiliatedwithagroup.Ourwebsiteprovideslocationandcontactinformationforallgroupsinournetwork.AdditionallytheremaybepersonslivinginareasnotservedbyaMSsupportgroupthatwouldbeinterestedinorganizingonebutperhapsdonotknowhowtogoaboutit.FearnottheMSFcanhelp.OurSupportGroupCoordinatorCrystalMilligancrystalmsfocus.orgispositionedtoofferadviceanddirectiontohelpmakethatareality.Shecanalsoprovideassistancetohelpunaffiliatedsupportgroupsbecomepartofournetworkwhichinturncanhelpboostmembership.Onewayoranotherwestrivetomakeself-helpgroupsavailabletoagreaternumberofpeopleandthusfarweappeartobewellonourwaytofulfillingthatpartofourmission.JulesKuperbergAlanR.SegaloffCo-ExecutiveDirectorCo-ExecutiveDirector AquaticsClassesandCruisingwiththeMSFAddJoyIamwritingtotellyouhowmuchbenefittheMSaquaticsgroupatthePalosHealthandFitnessCenterisforme.BeingpartofthegrouphasbeenagreatexperienceformeIwasdiagnosedwithMSin2007havingmyfirstrelapsein2010thatmademeleavetheworkforce.HavingthisamazinggroupofpeoplewhoknowwhatIamgoingthroughandgettingexerciseatthesametimehashelpedmegreatly.Ilookforwardtoeveryclass.DianaDudaisagreatinstructorwhokeepstheclasschallengingandfun.Beingasinglepersonsupportingherselfthescholarshipmoneyreallyhelpsmeout.Thankyouforthegenerousgift.IalsowanttothanktheentireMSFoundationforanamazingcruisetoAlaska.Mytwooldersistersandolderbrotherwentwithmeandwehadanamazingtimeandmetsomegreatpeople.IevengottorideahelicoptertotheMendenhallglacierandgodogsledding.Keepupthegreatworkthatyouguysaredoing.Itisgreatlyappreciated.ColleenNicholsViaemailInternetNewsletterKeepsHerInformedIwantedtothankyouforemailingMSFYiIlookforwardtothenewarticlesandinformingtopicsespeciallytheonesaboutwhatisonthehorizonforusYouaresoappreciatedkeepupthegoodwork.Thedayiscertainlycomingsoonwhenwefindthecure.EllenCampbellMiamisburgOhioHousekeepingHelpBringsBacktheShineIwanttosayabigTHANKYOUtotheMSFforhelpingmebysendingsomeonetohelpmetocareformeandmyhouse.NowthebathroomiscleanandtheworkIcannotdoisnowbeingdone.ThankstoyounowIamabletostayinmyhomeandenjoymyretirementyearswithmyhusband.HehelpscareformebutisnohomemakerIlovehimbuthejustdoesnotknowhowtovacuumNowthankstoyouIhaveacleaningwomanthatwillvacuum.RuthannLinscottViaemailComputerwasaNiceSurpriseLastyearIappliedtoyourcomputergrantprogram.ItwasaverybigsurprisewhenIreceivedthephonecallinformingmethatIwouldbearecipientofoneofthecomputersCanyouevenimaginethejoyIfeltwhenitarrivedatmyhomeIapologizefornotthankingyousoonerbutIwasntsurehowtogetthistoyou.Ithankyouagainandagain.SomehowsomedaysomewayIwillfindawaytopayitforward.MildredWallaceCorinthMiss.MSFocusFall20135IfyouhaveanycommentsorquestionsfortheMSFtheycanbeemailedtoeditormsfocus.orgorwritetoEditorMSFocus6520N.AndrewsAve.Ft.LauderdaleFL33309 MSFocusFall20136CopingwithMSischallenging.InadditiontomanagingthediseaseyoumustalsocopewithhowothersreacttoyourMS.AlthoughmanypeoplewillrespondinasupportivemanneryoumaysometimesexperiencedisrespectfultreatmentresultinginfeelingsofinsignificanceorshameforhavingMS.WhatisstigmaStigmaoccurswhenonegroupofpeopleislabeledasbeinglessworthythananothergroup.Thelabelcanleadtobeingexcludedortreateddifferentlybyothers.Disabilitieshavebeenparticularlysusceptibletostigmaandpeopleaffectedbydisabilitycanbecometargetsofdiscrimination.YoumayconfrontMS-relatedstigmaassociatedwithsymptomsofyourMSsuchasbeinginawheelchairorhavingnoticeablecognitivedifficulties.YoualsomayexperiencestigmajustbecauseyoucarrythelabelofMSevenwhenyoursymptomsarentactiveoreasilynoticedbyothers.Stigmaiscommonlybrokendownintotwotypes1socialstigmaPeoplewithMSareincapableofsuccessintheworkplaceand2internalizedorself-stigmaWhytrygettingajobSomeonelikemewouldntsucceedanyway.SocialstigmaoccurswhenothershaveanegativeviewofanindividualorgroupforhavingaqualitythatisseenaslessdesirablesuchashavingMS.SocialstigmalikelyhappensinpartduetoothersignoranceaboutandfearsrelatedtodiseasessuchasMS.DisabilityisntsomethingpeopleusuallychooseandyourMSservesasareminderthattheytoocandevelopadisablingdiseasejustlikeanyoneelse.InadditionifyoupersonallyarelivingwithMSyoucancometobelievethatpeoplewiththediseaseincludingyoudontdeservethesametreatmentoropportunitiesasthosewithoutMS.Thisself-stigmaoftencomesaboutthroughyourownorothersexperiencesorperceptionsofbeingtreatedasdifferentinvisibleorlessthanbecauseofMS.HowdoesstigmaaffectyouWhetherstigmacomesfromwithinyouorfromothersaroundyouitcanaffectmanyareasofyourlifeincludingrelationshipswithothersemotionalwellnessandphysicalhealth.WithsocialrelationshipssomepeoplewhofeelstigmamayexperiencesomeofthefollowingproblemsByLaraSteplemanPh.D.AbbeyValvanoPh.D.andLaurenPenwell-WainesPh.D. MSFocusFall20137YoumaybeslowtoformnewrelationshipsbecauseyoufearbeingjudgedunfairlyorrejectedwhenyoudiscloseyourMSdiagnosis.IfyouhaveexperiencedrejectionordiscriminationrelatedtoMSinthepastyoumightbegintoexpectnegativereactionsfromotherssoyoustopparticipatinginsocialactivitiesthatyouoncereallyenjoyed.Thisself-protectivestanceisunderstandablewhentryingtoavoidbeinghurt.Yetsocialavoidancecanleadtoareducednetworkoffriendsandfamilywhowouldbeabletoprovidesupport.Professionalrelationshipscanbeaffectedbystigmatoo.YoumightchoosetobelessopenaboutMSinworkrelationshipsespeciallywithsuperiorswhoareresponsibleforassessingperformance.Withoutadoubtstereotypesaboutpeoplewithdisabilitiescaninfluenceemployersorco-workersperceptionsaboutapersonsabilitiesatworkandinsomecasesresultindiscrimination.Stillfewerprofessionalrelationshipsalsocanactasabarriertopromotionnetworkingandemotionalsupportintheworkplace.FeelingrejectedorshamedbyyourMScanhaveconsequencesforyouremotionalwellnesstoo.Peoplewhoreportexperiencingmorestigmaalsoreportmoredepressionandanxietyaswellaslowerself-esteem.Stigmahasbeenassociatedwiththeuseofcopingstrategiesthathelpusavoidnegativeemotionslikesadnessangerorfrustration.Avoidancestrategiesincludeminimizingtheproblemtellingyourselfitsnobigdealusingdrugsoralcoholtonumbpainorwithdrawingfrompeopleandactivities.Althoughthesemayhelpyouavoiddealingwithnegativesituationsinthemomentthesestrategiesmayworsendepressionandanxietyinthelongrun.NotfacingproblemsalsocangetinthewayofadjustingtothechangesinyourlifecausedbyMS.Whenyoudenythatsomethingisaproblemyoudenyyour-selfthechancetochangeit.BecausedepressionisacommonexperienceinMSevenwiththebestsocialsupportsitisimportanttofindwaysofcopingwithstigmathatrecognizethepainitcauseswhilenotcreatingadditionalbarrierstolivingthelifeyouwant.Finallystigmacanaffectapersonsself-careandphysicalhealth.ForexampleIfyouexperienceshameaboutanillnessyoumaystayawayfromhealthcaresettingsbecausetheyareremindersoftheillnessitself.SinceavoidingyourprovidersalsomeansthatyoudonotreceivetheinformationortreatmentneededtomanageyourMSyoucanexperienceaworseningofsymptomsoranincreaseinrelapses.LikewiseyoualsomaymissdosesofyourmedicationtoavoidfeelingsofstigmathatmightoccurwhendoingMS-relatedtreatmentactivities.TheconsequencesofthesegapsinMSself-managementalsocanleadtomoreMS-relatedhealthproblems.Discriminationstigmaanddepressionalsohavedirecteffectsonhealth.Peoplewhoexperiencethesethingsfrequentlymaybelessabletofightoffinfectionsorvirusesbecauseofthestressthesenegativeexperienceshaveonthebody.Theeffectsofstigmaonemotionalphysicalandsocialfunctioningleadtoadecreasedoverallqualityoflife.Fortunatelytherearestrategiesyoucanusetofightagainststigmaandreclaimafullerlife. MSFocusFall20138WhatcanyoudoaboutitYoumaytakedifferentstepstohandlestigmadependinguponthesourceofit.BecausesocialstigmaoftenstemsfromignoranceimprovingotherslevelofunderstandingaboutMScanbehelpful.Therearedifferentwaystodothis.InvolvingothersinyourcarecanallowthemtogatherabetterideaofwhatMSisandhowitisaffectingyourlife.Offeringaninvitationtoyourmedicalappointmentsorsharinginformationwithyourfriendsorfamilyafteryourappointmentisovercanhelpachievethis.IncreasetheamountofcontactyouhavewithotherswhoarelivingwithMS.SocialeventsorganizedspecificallyforMSpatientsandfamiliessuchassupportgroupsorMSwalkscanbeexcellentwaystomeetothersgoingthroughsimilarcircumstancesandhearstoriesofstrengthandperseverance.Eventslikethesealsocanraiseawarenessandworkatbreakingdownstereotypes.Whenyourpartnerorfamilymembersareengaginginbehaviorsthatfeelstigmatizingcommunicatingabouthowtheirbehaviorisbeingreceivedandimpactingyouiscriticalsincetheymaynotfullyrecognizetheimpactontheirown.Ifyourlovedonescareaboutyoutheywillwanttoknowhowtobestsupportyou.Forhelpwiththecommunicationprocesscouplesorfamilycounselingmayproveuseful.Establishasolidpartnershipwithyourmedicalproviders.Helpthemunderstandyourconcerns.Theymaybeabletoprovidesomeusefulinformationorinsight.Fightingself-stigmaoftencallsforimprovementstoyourcopingskillstoolbox.Copingskillsarestrategiesthatcanbelearnedandappliedwithpracticebymostpeople.Theyoftentaketheformofcognitivechangingourthoughtsorourrelationshipwithourthoughtsorbehavioralstrategiesincreasingbehaviorsthatimprovecircumstancesandalteringbehaviorsthataregettingintheway.Mindfulnessorpresent-momentawarenesshelpsuslearnhowtofocusonthehere-and-now.Distressoftenstemsfromeitherfeelingstuckinthepastoronallthewhat-ifsinthefuture.Learningtobemoremindfulreducestheimpactofournegativethoughtsandemotionshelpingustoleadmoresatisfyinglives.Self-helpbookslikeAMindfulness-BasedStressReductionWorkbookbyStahlandGoldsteincanhelpguideyouinthisprocess.Cognitivere-framingisanotherusefulcopingskillthatinvolveslookingatadistressingorself-defeatingthoughtfromanewangle.ForinstanceyoumightfeelsadordepressedwhenyouthinkIcantgardenanymore.TakingadifferentperspectivesuchasIcanstillgardenIjustneedtousemycreativityandfindwaystodoitdifferentlymayhelplessenthesadness.Anothertrapwecanfindourselvesinisfocusingonallthethingswedontdowell.Trytakingnoteofyourstrengthsinstead.ForexampleyoumaynotbegreatatrememberingpeoplesnamesbutwhataboutthecontributionsyoumakeasaparentA MSFocusFall20139friendAco-workerPetownerNeighborEngaginginvaluedactivitieslikespendingtimewiththepeoplewecareaboutorworkingonthatprojectyouvebeenmeaningtofinishcanalsoincreasepositiveemotionsandourbeliefinourabilitytoaccomplishgoals.IfyouvetriedthesestrategiesandarestillstrugglingdontdespairTalkingwithamentalhealthprofessionalfamiliarwiththeseconcernsmighthelpyousharpenyourcopingtools.IfyouareexperiencingdepressionoranxietytherearereliabletreatmentsavailablesuchasCognitiveBehavioralTherapyorAcceptanceandCommitmentTherapy.AskyourmedicalproviderforareferralorusewebsitestoaidyoursearchliketheAssociationforBehavioralandCognitiveTherapieswww.abct.orgorAssociationforContextualBehavioralSciencecontextualscience.organdclickonFindaTherapist.Youmayalsocheckwithyourinsurancecompanytolocatein-networkproviders.Therearelotsofresourcesouttheresoyouneedntgoatitalone.LaraSteplemanPh.D.topleftisaProfessorofPsychiatryandHealthBehaviorandDirectorofMSPsychologicalServicesintheMSCenteratGeorgiaRegentsUniversity.ShespecializesinassistingthosewithchronicmedicalconditionslikeMStolivetheirbestlives.AbbeyValvanoPh.D.rightisahealthpsychologypostdoctoralfellowandcoordinatorofpsychologicalservicesfortheMSclinicatGeorgiaRegentsUniversity.LaurenPenwell-WainesPh.D.bottomleftisahealthpsychologyfellowinAugustaGAwhostudiesadjustmenttochronicillnessesandfindingwaystohelppeopleleadhealthierlives.Announcing2014AwarenessMonthThemeWevegotathemenowweneedyourhelpMSCountsisourthemefor2014NationalMultipleSclerosisEducationandAwarenessMonthNMSEAMinMarch.AsthoseintheMScommunityknowtheeffectsofMSonindividualstheirlovedonesandsocietycanbeprofoundyesMScounts.ThatswhyitsimportantforthosewithMStobecountedbyeducatingothersaboutMSparticipatinginfundraisingactivitiesorbecominganadvocate.MSAwarenessMakeitCountisthenameofour2014NMSEAMinitiativeacontesttoseewhocanstagethelargestawarenessactivity.ForcompletedetailsseeourwebsiteandtheWinterissueoftheMSFocus. 10MSFocusFall2013MSFJoinsFastestGrowingSocialNetworkforPeoplewithMSTheMultipleSclerosisFoundationisexcitedtohavepartneredwiththefastestgrowingsocialnetworkforthoselivingwithMSMyMSTeam.com.Currentlyyoucanmeetover5000otherpeoplelivingwithMS.Onceyouregisteryoucansearchbyagestagesymptomsdiagnosisandlocationtofindpeoplewhocanrelatetoyourpersonalsituation.Itsaterrificwaytoshareyourdailyupsanddownspersonalexperiencesorsimplygetperspectivefromothers.AuniquefeatureofMyMSTeam.comistheabilitytosharetheteamofproviderswhohavehelpedyouandgetinsightsfromothersontheMSspecialistswhovebesthelpedthem.WhetheritsyourneurologistMSCentersupportgrouporotherMScareprovideryoucangiveorgetrecommendationstohelpidentifytheverybestsupport.MyMSTeam.comisfreetosign-upandisonlyforthoselivingwithMS.Findpeoplewhofinallygetit.Sign-upforMyMSTeam.comforfreetodayandbesuretoaddtheMSFtoyourteamNowistheTimetoPlanYourAwarenessMonthEventManycaringfriendsoftheMSFhavegotteninvolvedinNationalMSEducationandAwarenessMonthNMSEAMwhichtakesplaceannuallyinMarchbyhostingspecialeventsdesignedtoraiseMSawarenessandorraisefunds.BenefitsoftheseeventsaresubstantialnotonlytotheMSFbuttotheorganizerstoo.Participantsdevelopcamaraderieandmakenewfriends.FindspiritandsatisfactionhavingfunandhelpingsuchanimportantcauseThereisnorightorwrongwaytodesignanNMSEAMactivityandthepossibilitiesareendless.Shouldyouchoosetofundraiseourdevelopmentteamcanassistyouwitheveryaspectofplanningaspecialeventregardlessofhowbigorhowsmall.ThoughMarchseemsfarinthefuturenowisthetimetostartplanning.Ifyoureinterestedinhostinganeventorlearningotherwaystogetinvolvedemailusatawarenessmsfocus.orgorcallusat1-800-225-6495.DONATINGYOURUNNEEDEDCARVANORTRUCKCANHELPFIGHTMULTIPLESCLEROSIS800-225-6495800-225-6495MULTIPLESCLEROSISFOUNDATIONTAXDEDUCTIONINYOURGARAGECONVENIENTFREEPICKUPWEDOALLPAPERWORK 11MSFocusFall2013 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.MSFocusFall201313 MSFocusFall201314FormoreinformationyoucancalltheGILENYAPregnancyRegistryat1-877-598-7237orvisitwww.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 MSFocusFall201315Tremorisaninvoluntaryback-and-forthmovementthatmayaffectthearmslegsandhead.Sometimestremoraffectsthemusclesusedforspeaking.Acommonyetdifficult-to-treatsymptomofMStremorcanbeverydisablingandisoftenassociatedwithadvancedstagesofthedisease.HoweveritisalsotruethattremorduetoMScanbemildandcancomeandgo.ResearchindicatesthatmostMStremorsarecausedbydemyelinationtothecerebellumorthenervesleadingtoorawayfromit.Thecerebellumisthepartofthebrainwhichcontrolsbalanceandcoordination.Tremorcanalsobetheresultofdemyelinationinthethalamusandthebasalganglia.IntentiontremoristhemostcommonandgenerallymostdisablingformoftremorthatoccursinpeoplewithMS.Thistypeoftremorgenerallyisgreatestduringphysicalmovement.Graspingorreachingforsomethingormovingahandorfoottoaprecisespottriggersthetremorandgraduallyitbecomesmorepronounced.Whenapersonisatrestshakingsubsides.Posturaltremorsoccurwhenthepersonholdsanarmorleginonepositionforaperiodoftimeagainstgravity.Thismayhappenwhenwritingholdingacupholdingyourarmsoutorwhenstandingupstraight.Nystagmusisatypeoftremorthatproducesjumpyeyemovementswhichcandisturbtheaccurateperceptionofobjectsintheenvironment.MedicationstoManageTremorManyproductshavebeentriedinthetreatmentoftremorbutnoonedrugworksforeveryoneandineachcaseindividualresultsmayvary.ThefollowingmedicationshavebeenusedtotreatMS-relatedtremortheanti-tuberculosisagentisoniazidINHtheantihistaminesAtaraxandVistarilhydroxyzinethebeta-blockerInderalpropranololtheanticonvulsivemedicationMysolineprimidoneadiureticDiamoxacetazo-lamideandanti-anxietydrugsBusparbuspironeandKlonopinclonazepam.BotulinumInjectionsBotulinumtoxininjectiontherapyknownasBotoxtherapyisalsousedtotreattremor.Botulinumtoxinhastheabilitytoblockspecificneurotransmittersorchemicalmessagessentfromthenervesspecificallythosemessagestellingthe 16MSFocusFall2013musclestotightenuporcontract.Butanyimprovementistemporaryandtreatmentsmustberepeatedeverythreetofourmonths.Additionallysomepatientsmayexperiencetemporaryweaknessinthegroupofmusclesbeingtreated.DeepBrainStimulationIfapatienthastriedvariousmedicationsandcompensatorystrategieswithoutsuccessandtremorisdiminishingtheirqualityoflifedeepbrainstimulationmaybeanalternative.Deepbrainstimulationisawaytoinactivatethethalamuswithoutdestroyingit.Anelectrodewhichemitssmallelectricalshocksisplacedinthethalamus.Itisconnectedbyawiretoadevicesimilartoapacemakerthatisimplantedundertheskinoverthechest.Deepbrainstimulationcancausebothpositiveandnegativeeffectstothebrainbecausemanycriticalbrainfunctionsarelocatedwithincloseproximityofoneanother.Neverthelessthisprocedurehasbenefitedsomepeople.GammaKnifeRadiosurgeryBrainsurgerythatdoesnotrequireanincisionisperformedwiththeGammaKnifebutthenameismisleadingbecausetheinstrumentisreallynotaknifeatall.Itisaninstrumentthatfocusesmultiplebeamsofradiationtoatargetedpointinthebrain.Althougheachbeamofradiationisoflowintensityatthepointwheretheymeetthebeamshavethecombinedstrengthtodamageordestroytissue.InseverecasesGammaKniferadio-surgerymaybeusedtoremovethethalamusforthemanagementoftremor.CompensatoryAidsStrategiesAssistivetechnologyorotherproductsdesignedtominimizetheeffectsoftremorcanbehelpful.Productsareavailablethatcanassistanindividualinthebathroomkitchenbedroomlivingroomworkplaceoranyotherplacewhereactivitiesmaybeaffected.Theseproductsmaydiminishoroffsettremorandorprovidewaystoenhancelimborvoiceusage.Forexampleweightedcuffsmaydiminishthetremorandadaptedcutlerycanreducetheprecisiondemandsforgrippingthusreducingtremor.Itemssuchasanelectrictoothbrushcanminimizetheneedtoperformrapidalternatingmovements.Iftremorisaffectingthelipstonguejaworinterferingwithbreathcontrolorspeechaspeechtherapistmayoffersuggestionsforwaystospeakmoreclearly.Apaceboardwhichconsistsofapatternofside-by-siderectanglesissometimesused.Eachtimeasinglesyllableisutteredthepersonpointstoarectangle.Ifthepersonisabletospeakslowlyenoughtokeeppacewiththepointingthepaceboardmaybehelpful.PatterningBecausetremorisoftenassociatedwithbalanceandcoordinationdifficultiesexercisesforbalanceandcoordinationcanbebeneficial.Patterningreferstoatechniquethatisusedbyphysicalandoccupationaltherapiststotraceandrepeatbasicmovementpatterns.Itisbasedonthetheorythatcertainmusclesmaybetrainedtomoveinacoordinated 17MSFocusFall2013fashionbyrepeatedlyusingthenervouscircuitthatisinvolvedinthemovement.Thetherapistguidesandassiststhesenormalmovementsuntiltheybecomeautomatic.Thenminorresistanceisaddedandremovedwhilethepersonrepeatsthepatternindependently.Graduallythemusclesappeartodevelopincreasedendurancefortheselearnedmovementsandmanagetoretaincontrolwhenthepatternsareappliedtofunctionaltasks.WorkingwithBalanceAnothermethodsometimesusedtomanagetremoriscalledvestibularstimulationwhichinvolvesincreasingtheamountofstimulationreceivedbythebalancecentersinthebrainstemallowingthebraintofunctionmorenormally.Thetechniquesusedchallengeyoursenseofbalancebyrockingswingingorspinningusingsuchactivitiesassittingonabeachballorswinginginahammock.WorkingwithanexerciseballalsocalledaSwissballorstabilityballcanalsobebeneficial.OftenrecommendedbyphysicaltherapiststheballexercisespromotecorestrengthstrengthinyourabdominalandbackmusclespromotingbetterbalancepostureandstabilityIfthepersonisabletostandcomputerizedbalancestimulationwithamachinecalledabalancemasterisanotheroption.Oftenusedinphysicaltherapytheindividualstandsonaplatformconnectedtoacomputerwithavideoscreen.Movementsofthefeetshowuponthescreenprovidingvisualbiofeedback.Thisallowsthetherapisttoassesssensoryandvoluntarymotorcontrolofbalanceweightbearingsymmetryandneuro-muscularcoordination.Thisdataenablesthetherapisttodesignappropriateandeffectivetreatmentstrategiesforretraining.ImmobilizationBracingcanbehelpfulontheankleandfootbyprovidingstabilityandimprovinggait.Itcanalsobebeneficialforthearmandhand.Byimmobilizingthearmorhandtheindividualmayholdthedesiredpositionrequiredinordertoeatwriteorsew.Oncethetaskiscompletedthebraceisremoved.Tremorsoftheheadneckanduppertorsomaybemoredifficulttomanagealthoughstabilizingtheneckwithabracemaybeeffective.WeightingWeightingoraddingweighttospecificpartsofthebodytoincreasemovementcontrolisanotheroption.Thisapproachisbasedonthetheorythatmoremuscleswillbeutilizedtostabilizeadistantpointonthebodysuchasthehandwristorfootwhenaheavierobjectisinvolved.Unfortunatelynoneofthedrugsortechniquescurrentlyavailablecuretremororeliminateitentirely.Buttheultimategoalwhichistomaintainfunctionmaybeaccomplishedbycombiningsomeofthesetechniques.Talkwithyourneurologistabouttheoptionsthatareavailabletoyou. MSFocusFall201318ByBettyGibsonWemaysharetheconditionknownasmultiplesclerosisbutwealsomaysharetherightattitudeyeswecanEveryonewithMShasdifferentsymptomsanddifferentwaystocopewiththeselittleannoyancesoflife.Okaysotheymaybebighugeannoyancesreallymajorproblemsbutwecansurviveandbesuccessfulinourlives.Tremorisonesymptomconsideredbyphysiciansandotherhealthprofessionalstobeoneofthemostdifficultsymptomstotreat.ThissometimesembarrassingconditionisfairlycommoninpeoplewithMS.Thoughthereisnocuretodatetherearesomewaystocombatit.OnepersonwhobattlesareallydevastatingconditionknownasessentialtremoratypeoftremornotduetoMSbutwhichhasbeenknowntooccurinpeoplewithMShasfoundseveralmethodsofcontinuingwithherlife.JoDoganwasascienceteacherwhohandledchemicalsinclassdaily.Ashertremorsincreasedsheallowedhermosttrust-worthystudentstodomuchofthehands-ondemonstration.Thishadadualbenefitsafetyfortheclassandteacheraswellasanextralearningexperienceforherstudents.Thelessonherewhenpossibleletotherscarryoutthetaskathand.Sometimesordinaryfolkswithextraordinaryproblemsfindsolutions.InthiscaseapersonwithtremorssuchasthosecommontoMShaswonderfulcopingmechanismsthataresoverysimpleFirstJorecommendsthatinsteadofflingingfoodatyourfamilyfriendsandtotalstrangerseateverythingwithatablespoon.Takesmallbitesandusebothhandstosteadythespoon.Keeponeelbowonthetablenotgoodmannersbuthelpfulandholdonehandwiththeother.Thisusuallykeepsfoodatleastonthetableandmainlyinyourmouth.FoolproofOfcoursenotbutbetterthanstabbingyourselfwithaforkPlusyouwontstarve.NextcanyouimaginedrinkinghotcoffeethroughastrawItcanbedoneBesureyouareusingagoodqualitystraw.Testitwithagentlesip.IfitdoesntmeltorcollapseyouhavedrinkablecoffeeHowaboutsoupThisiswhatJodevisedforovercomingtremorLastmonthIwenttoLowesandboughtathree-footpieceof38thinchrubbertubing.Icutitintopiecesanduseitforsoupswithchunkssmallenoughtofit.ThisismeenjoyingtomatobisqueThisworkswithmushroom MSFocusFall201319souptoowhichIlove.NexttimeIllgetthecleartubingthislookslikeImsuckingonasiphonhoseWorksgreatthoughsoupwithoutthespoonBabieswearbibsforareasonithelpskeeptheirclothesclean.WhataboutadultswhospillfooddownthefrontoftheirclothesTryacobblersapron.AretheyeasytofindYeswehavetheinternetTherearebeautifulprintswithbirdsflowersandanythingelseyoudesire.Formentherearemoremasculinestylesandcolors.Theremightevenbesomewithtoolthemes.Somehavepocketsgreatforcarryingstrawsandtablespoonsyournewessentialutensilsorforcatchingspilledfoodreadyforsnackinglater.Withtremorwritingbecomesdifficultattimes.IfyoucantsignacheckandbanksreallyarestuffytheyfrownonanXasasignaturetrythiswritingaid.ThisisthePenAgainawritingdevicewhichgivesextrasupportforsomeonewithtremorstowrite.Sportsenthusiastsalsofindwaystocontinuewithmanyfavoriteactivities.Forexamplearcheryrequiresbalancesoarmandlegtremorsarearealproblem.ItishardenoughtoaimatatargetwithoutfeelingyouareabouttotipoverandwithoutactuallytippingArcherMariaF.AndeshasfoundthatproppingherbackagainstasupportpostattheshootinglinekeepsheronherfeetDoesthatpromiseaperfectbullseyeeachtimeNobutatleastshesstilluprightandenjoyinghersportTherearemanyotherwaysofcopingwithtremorsbuttheseshouldgiveeveryoneastartingpoint.WhateasyinexpensivewayscanyoudeviseThoughtremorcanbefrustratingkeepingapositiveattitudewillhelp.RememberyeswecanBettyGibsonwasdiagnosedwithrelapsing-remittingMSin1989anddespiteincreasingsymptomsshecontinuestobeactive.Whetherinacollegeclassroomsherecentlyretiredfromin-personteachingoronlinesheconnectswithmanypeoplewhoalsohavebeendiagnosedwithMS.ThoughMSbringsmanyproblemsBettysaysWecanstilldosomuchHermessageistokeepgoingSheurgesotherstousewhateverresourcestheyhavementalorphysicaltoshowtheworldtheyhavenotbeenconqueredbyMS.BettyisaMSFAmbassadorandshelivesinTheVillagesFla.withherhusbandGail. FormoreinformationcontacttheMultipleSclerosisFoundationat800225-6495Cruisemsfocus.orgWearegettingreadytosailJanuary25th2014ZumbainChairs-Yoga-FitnessTraining-DietMSComplementaryandAlternativeMedicine-HealthandWellnessNewandEmergingTherapies-SupportingtheCarePartnerMeditation-Relaxation-MSFBeachPartyWildShirtContestHowtoCommunicate-MSFPorttoPortSupportGroupMeetingCarePartnerSupportGroupMeetingAllthisandonashiplikenootherTimeisrunningouttojointheMSFs2014educationalprogramsatseaDontmissoutonwhatpromisestobeoneofthemostfunenergizingandinformationalcruiseseverHealthandWellnessCatchtheWaveisthethemeofthe2014MSFCruiseforaCauseaseven-nightEasternCaribbeancruiseaboardthemagnificentCelebrityReflection.WewillbesailingJanuary252014fromMiamiFla.totheexcitingportsofSanJuanPuertoRicoCharlotteAmalieSt.ThomasandPhilipsburgSt.Maarten.YoucandoitActivitieswillbesuitableforalllevelsofability.AndthatsnotallWeveassembledastellarlineupofMSexpertstobringthisinformationtoyouJackS.BurksM.D.isaninternationalleaderinMSneurologyandchronicdiseasemanagement.Formorethan30yearshehasbeeninvolvedincomprehensivecareresearchandeducationinmultiplesclerosis.LauraMcCattyR.N.MSCNisaMScertifiednurseandmemberoftheInternationalOrganizationofMSNurses.ShehasspentmanyyearseducatingpeopleaboutmanagingtheirtherapyandlivingwellwithMS.YogatherapistMindyEisenbergandcertifiedpersonaltrainerJeffreySegalarebothlong-timefriendsandsupportersoftheMSF.MindyssessionswillintroducecruiserstothemanybenefitsofmeditationrelaxationandyogathathasbeenadaptedinchairstoaccommodateandhelprelieveMSsymptoms.JeffreywillguideMSFcruisersthroughexercisesthataresimplebuteffectiveshowinghowfitnesscanbefunwithoutlotsoffancyequipmentGetreadytoPARTYwithNickMarchesanistartingusoffwithanexcitingfun-filledtimewithZumbainChairsmorethanadanceclassmorethananexerciseclassmorefunthanyouveeverhad MSFocusFall201322EachNovemberinrecognitionofNationalFamilyCaregiversmonthwehonorthosespecialpeoplewhoselflesslydevotemuchoftheirtimeandattentiontocareforfriendsandlovedoneswithMS.FortheMSFCaregiversNightOutContestweaskedyoutotellusin100wordsorlesswhatmakesyourcaregiverspecialandhowheorshehasmadeadifferenceinyourlife.Yourdescriptionsofsacrificeloveandkindnesswereilluminatingyourgratitudeoverflowing.Thefollowingcarepartnerswerechosentoreceivedinnerfortwoatarestaurantoftheirchoice.WesalutethemandallcaregiverswhoworkhardeverydaytoassistthoseaffectedbyMS.AllinaDaysCareEachdaybeginsthesameforLyleMichlitsch.WhenhiswifeJoAnnawakeshegentlywrapsherlegstoeasethefluidretentionthatcanbuild.Hethenhelpsherslideintotheclothesshehaschosenforthedayandintothewheelchairthathasbeenhersourceofmobilityforthepast13years.ThedaywillcontinuewithLyleperformingmoretasksforhiswifeof53yearsandendwithhimslippingherbackintobed.JoAnnsayssheisgratefulforeachdaytheyhavebeentogether.HehasalwaysbeentherewhenIneedhimshesays.HegoesaboveandbeyondasacaregiverThecouplefromLangfordSouthDakotahassomethingelsetocelebratewiththeirnightoutLyles75thbirthday.HappyBirthdayLyleSonShinesBrightlyInnominatinghersonKyleDeAngeloCharlesfortheCaregiversNightOutLynetteCharleshadatoughtimetellingin100wordsorlessallthewonderfulthingshedoesashercaregiver.Onehundredwordscouldnotdohimjusticeshesays.Butinlessthan100wordsshediddescribemanyofthechoreshecheerfullycompleteswashingclothesanddishessewingcookingcaringforthedogmowingthelawnvacuumingandmopping.InadditiontoallthatKyleholdsdownajobmaintainsanABaverageandtravelsthroughoutthecountrytodance.Thoughheonlyspendsthesummersfull-timewithhismomduringtherestoftheyearKylegetsalotdoneonhisweekendvisitstoherhomeinDetroitMich.Lynettedoesntknowwhatshewilldowhenhegoesawaytocollegenextyear.ItellhimeverydayhowproudIamofhimandhowmuchIlovehimshesays. AlwaysbyhisSideFormanycaregiverstakingcareoftheirfriendorlovedonereachesbeyondthehomeandintotherealmofhealthcarewheretheybecomeanadvocateforthepersonwithMS.ThatswhathappenedwhenRubenSepulvedaofFt.LauderdaleFla.woundupinthehospitalforthreedays.HiswifeLoisstayedbyhissidetheentiretimesleepinginabedsidechaireverynight.WhenthenurseshaddifficultycoordinatinghisMSmedicationsLoispatientlyexplainedtheprocesstothem.IfitwasntforhertakingcareofmeonadailybasisIwouldntsurvivehesays.Shehasgivenupherworkandherlifetodedicateherselftomycare.WithoutherIcouldntgetdressedorgetoutofthehouseorgettomydoctors.Shedoesallthiswithasmileonherfaceandnevercomplains.AboveandBeyondtheCallofDutyWhileitstruethatmanyfriendsbecomecaregiverssometimestheoppositehappensacaregiverbecomesafriend.SuchisthestoryofGranvernstWhiteofCalumetCityIll.andherlongtimecaregiverAlbertaWalker.OldenoughtoretireAlbertarefusestodoso.ShewantstocontinuecaringforGranvernstjustaslongassheisableeventhoughshemustalsocareforherownsonwhoisparalyzed.WheneverAlbertagroceryshopsforherownfamilyshecallstoseeifGranvernstneedsanything.ShedropsbydailytocheckonGranvernstevenonherdaysoff.WhenGranvernstsvacationwasabouttobecanceledbecausenoneofherfamilycouldgoAlbertasteppedintosavethedayatherownexpense.SheisoneofthemostamazingpeopleIknowGranvernstsays.ReversingRolesInDecember2012DeniseDaltonwasanewcaregiverto84-year-oldPhilGardnerofYubaCityCalif.ThoughhewasstillabletodriveaschoolbusPhilneededsomeonetohelphimdocertainthings.Littledideitherofthemknowthatinthreemonthstheywouldswitchroles.WhenMSstruckDeniseitdevelopedsoseverelythatshecouldhardlycareforherselfletaloneanyoneelse.ThatswhenPhilbecamehercaregiver.Heprovidesmeahomeandsupport.HetakesmetoappointmentsandhasalsopaidformymedicationDenisesays.Andhedoesitwithlovenotresentment.PhilhasalsobecomeastudentofMSlearningallhecanaboutthediseaseandhowitaffectspeoplesothathecaneducateothers.23MSFocusFall2013 24MSFocusFall2013BoyfriendsLiftsherSpiritsBythetimeshewasdiagnosedwithMSin2010HeatherRowanwasaself-describedcompletewreckinsideandout.ShecreditsboyfriendKyleFolbwithhelpinghertopullthroughitallasshestartedadisease-modifyingmedicationandbegantorebuildherhealthandherlife.Temporaryblindnesslossofbladdercontrolnumbnessinherlegsthesewerejustsomeoftheobstaclesshefaced.TheemotionalconsequencesofMSwerejustaschallengingasthephysicalonesyetKyledealtpatientlywithhermoodswingsanxietyanddepression.HeissuchathoughtfulsensitivemanwhohasdoneandcontinuestodoeverythinghecantokeepmyspiritsupandhelptakecareofmephysicallyandemotionallyHeathersays.AMomtoLeanonAtherworstLindseyCouncillostallbodilyfunctions.Shecouldnotwalktalkeatorseeandshewasincontinent.InadditiontoMSshehadautoimmunehepatitisandanemia.Majorbrainlesionscausedconfusionandsometimesshebecameaggressive.ThroughitallhermotherLindaCouncilcaredforher24hoursadaysevendaysaweekfortwomonthsstraight.AtthetimeLindawasalsocaregiverforherhusbandLindseysdadwhohadkidneyfailurediabetesanacuteinfectionandalegamputation.ItwasaveryexhaustingdistressingtimeintheCouncilhomeinOcalaFla.butLindanevergaveup.MymomdidallofthisandmoreLindseysays.Thethingisinthemidstofallthecare-takingmymotherisalsodisabled.IthankherandlovehermorethanIcansay.AlwaysFocusingonOthersAdoublemastectomyand30roundsofradiationtodestroybreastcancerwasnomatchforthedevotionSueKnighthasasmotherandcaregivertoherdaughterAprilKnight.Shecouldnotwouldnotgiveup.DespiteherownhealthbattleSuecontinuedtofocusontakingcareofApriltothebestofherabilityaswellasher26-year-oldautisticgrandson.Healsoneedsroundtheclockcare.ThefamilyinGrottoesVa.isgratefulforallshedoes.AnytimeImtiredorIcantdothingsmymotherisalwayshere.ShesbeenatrueblessingandIthankGodeverydayforher.Sheismyrock.Shedoessomuchformeandothers.Sheisawell-deservingcaregiver. MSFocusFall201325ConqueringMSTogetherWhenthesufferingfromMSthreatenedtodestroytheirmarriageKeliyaandSheltonParteeforgedaheadtogetheronestepatatimeonedayatatime.SheltonquithisjobasavocationalinstructorofinformationtechnologytocareforKeliyaintheirhomeinSardisMiss.NowhespendshistimecaringforKeliyaandtheirchildrenalwaysthinkingofhowtoimprovetheirlives.TherearesomanytimeswhenIamdepressedangryfrustratedsadandIfeelbadbecauseMShastakenmylifebutmyhusbandkeepsmemotivatedinspiredandcontinuestofindwaystomakemydaysbettershesays.Bathingdressingcookingcleaninghouseanddoingherhairandmake-uparejustsomeofthetasksSheltonperformseachday.KindandcompassionatealwaysrespectfultomeandmyfeelingsgreatpatiencethesearesomeofthewordsKeliyausestodescribeShelton.Itrulythankmyhusbandbestfriendlovercaregiverandmostofallmysoulmateshesays.LittleTouchesBringBigSmilesDebbieKirschnervividlyremembersthemomentshetoldherhusbandDavethatshehadbeendiagnosedwithMS.HelookedintomyeyesandsaidWhatdoweneedtododiffer-entlyWeareinthistogether.Hesetanexamplefortheirtwosonswhowere5and10yearsoldatthetimetotreattheirmotherasaprincess.Hisspecialtouchesarepullingdownthecoverseachnightsprayingherpillowwithlavenderandlayingoutherpajamas.Debbiesayshisloveandthought-fulnesskeepshergoing.DespitethechallengesoflivingwithMStheirlovehasgrownstrongerduringtheir33yearsofmarriage.ThecouplefromNewtownSquarePenn.islookingforwardtotheirfuturereadyforwhateveritmayhold.VisitOurWebsitetwww.HeatReliefDepot.comReceivea10DiscountUseCouponCodeMSFWarmingVestsHandFootWarmersWarmingCushionsHerbalWrapsHeatPacksMoreCoolingVestsNeckWristCoolersFansSunscreensHatsCapsVisorsMistingProductsMoreYourPlaceForPersonalCoolingWarminProductsHEATRELIEFDEPOTOrCallUsTollFree877-879-1450 ImportantinformationaboutH.P.ActharGel.PleasereadthissummarycarefullyandaskyourdoctoraboutActhar.Noadvertisementcanprovidealloftheinformationneededtodetermineifadrugisrightforyouortaketheplaceofcarefuldiscussionswithyourhealthcareprovider.Onlyyourhealthcareproviderhasthetrainingtoweightherisksandbenefitsofaprescriptionmedicine.WhatisthemostimportantinformationIshouldknowaboutH.P.ActharGelActharcancauseserioussideeffectsincluding1.Increasedriskofinfections.Actharaffectsyourimmunesystem.Thereforepatientsmaybemorelikelytogetnewinfectionsorinactiveinfectionsmaybecomeactive.Tellyourdoctorrightawayifyouhaveanysignsofinfectionsuchasfevercoughvomitingdiarrheaorsignofillnessorfluoranyopencutsorsores.2.Adrenalglandchanges.Actharhaseffectsontheadrenalgland.WhenapatientistakingActhartheiradrenalglandmayproducetoomuchofahormonecalledcortisol.ThiscancausesymptomsofCushingssyndromeupperbodyfatroundedfacethinskinwhichismorecommoninpatientswhotakethismedicineforalongtime.WhenapatientstopstakingActharafteralongtimethebodymaynotproduceenoughcortisolonitsownadrenalinsufficiency.Thedoctormayprescribeasteroidmedicinetoprotectthebodyuntiltheadrenalglandrecovers.DonotstopadministeringActharwithouttalkingtoyourdoctorfirst.3.Bloodpressurechanges.Bloodpressureshouldbecheckedduringtreatmentyourhealthcareprovidermayinstructyoutomakesomedietarychanges.Actharmaycauseanincreaseinbloodpressure.4.Vaccineeligibility.PatientsshouldnotreceivecertainvaccinesduringActhartreatment.Talktoyourhealthcareprovideraboutwhichvaccinesaresafeforyou.5.Undetectableconditions.Actharmayhideormasksymptomsofotherconditionsordiseasesmakingitmoredifficultforyourhealthcareprovidertodiagnoseotherconditionsordiseasesinyouduringtreatment.6.Stomachbleedingorulcers.Youmayhaveanincreasedriskforbleedingfromthestomachorhavingastomachulcer.Reportanypaininthestomachareavomitingorbloodyvomitbloodyorblackstoolsexcessivetirednessincreasedthirstdifficultybreathingorincreasedheartrate.7.Changesinmoodorbehavior.Irritabilitydepressionortroublesleepingmayoccur.WhatisH.P.ActharGelActharisaprescriptionmedicineapprovedtotreatacuterelapsesinadultswithmultiplesclerosisMS.ClinicaltrialshaveshownActhartobeeffectiveinspeedingtheresolutionofanMSrelapse.HoweverthereisnoevidencethatActharaffectstheultimateoutcomeornaturalhistoryofthedisease.WhatshouldItellmyhealthcareproviderbeforeusingH.P.ActharGelTellyourdoctoraboutallofyourhealthconditionsincludingifyouhaveAskinconditioncalledsclerodermaBonedensitylossosteoporosisInfectionthroughoutyourbodyAneyeinfectioncalledocularherpessimplexRecentlyundergonesurgeryHistoryoforacurrentstomachulcerHeartproblemsHighbloodpressureAllergiestopigderivedproteinsDiabetesKidneyproblemsThyroidproblemsLiverproblemsNeuromuscularproblemsConvulsionsorseizuresHadexposuretosomeonewithtuberculosisTBRecentlybeenvaccinatedTellyourhealthcareproviderabouttheseandanyotherhealthproblemsyoumayhaveormedicinesyouaretakingincludingprescriptionandnonprescriptionmedicinesvitaminsandherbalsupplements.HowisH.P.ActharGelgivenActharshouldneverbegivenintravenouslyintoavein.Actharisgivenasaninjectionintothemuscleorundertheskin.Donotinjectitintoaveinorgiveitbymouth.InjectActharexactlyasyourdoctortellsyou.Yourdoctorwilltellyouwheretogivetheinjectionhowmuchtogivehowoftenandwhentogiveyourselftheinjection.TogiveActhar-Takethebottlefromtherefrigerator.Donotopenthebottleorprythecaprubberstopperoff.-Warmthecontentsbyrollingthebottlebetweenyourhandsforafewminutes.-Washyourhands.-Preparetheskinwhereyouaregoingtogivetheinjectionbywipingitwithanewsterilealcoholwipe.Beforegivingtheinjectionlookatthesitepreparedfortheinjectionandmakesurethatitnolongerlookswet.Awetsitecancauseburning.-Wipethetopofthevialrubberstopperwithanewsterilealcoholwipe.-UseanewsterileneedleandsyringetodrawuptheamountofActharthedoctorhastoldyoutouse.-Givetheinjectionthewaythedoctorhasinstructedyou.-Returnthebottletotherefrigeratorassoonaspossible.WhatarethepossiblesideeffectsofH.P.ActharGelSeeWhatisthemostimportantinformationIshouldknowaboutH.P.ActharGelActharcancausesideeffectssimilartothosethatcanhappenwithsteroidtreatments.TellyourhealthcareproviderrightawayifyouhaveanyofthesymptomslistedbelowwhiletakingActhar.NotallofthefollowingsideeffectshaveoccurredwithActharbuttheymightbeexpected.BeforebeginninganytreatmentyoushoulddiscusswithyourhealthcareproviderthepotentialbenefitsandrisksassociatedwithActhar.Othersideeffectsarepossible.ActharmaymakecertainothermedicalconditionsworsesuchasdiabetesmayincreasebloodsugarcauseeyeproblemssuchascataractsincreasedpressureintheeyeglaucomaandpossibledamagetotheopticnerveandcauseallergicreactionstoActharseenasskinrashswellingofthefacetonguelipsorthroatandtroublebreathing.Actharmayaffectgrowthandphysicaldevelopmentafterlong-termuse.Long-termuseofActharmaycauseanincreaseinthesizeoftheheartbutthisconditionusuallygoesawayafterActharisstopped.Tellyourdoctorifyouhaveanyofthesideeffectslistedabove.WhatarethemostcommonsideeffectsofH.P.ActharGelThemostcommonsideeffectsofActharininfantsincludeinfectionsincreasedbloodpressureirritabilityandchangesinbehaviorchangesinappetiteandweightdiarrheaandvomiting.Otheradversereactionsreportedinadultsandchildrenover2yearsofageincludedabdominalbloatinganxietyasthmachestdiscomfortcongestiveheartfailuredizzinessshortnessofbreathrednessofthefacefluidretentionflushingheadacheinjectionsitepaintirednessmuscleweaknessnervousnessrapidheartrateandlackofenergy.Reportsideeffectstoyourhealthcareprovider.ThesideeffectslistedherearenotallofthesideeffectspossiblewithActhar.Askyourhealthcareproviderformoreinformation.Tellyourhealthcareproviderifthereisanysideeffectthatbothersyouorthatdoesnotgoaway.YouareencouragedtoreportnegativesideeffectsofprescriptiondrugstotheFDA.Visitwww.fda.govmedwatchorcall1-800FDA1088.HowshouldIstoreH.P.ActharGelStorevialsofH.P.ActharGelintherefrigeratorbetween36Fto46F2Cto8C.Throwawayanyvialsaftertheexpirationdateprintedonthelabel.WhataretheingredientsinH.P.ActharGelActiveingredientCorticotropin.InactiveingredientsgelatinphenolcysteinesodiumhydroxideandoraceticacidtoadjustpHandwaterforinjection.GeneralinformationaboutH.P.ActharGel.MedicinesaresometimesprescribedforpurposesotherthanthoselistedinthePrescribingInformation.DonotuseH.P.ActharGelforaconditionforwhichithasnotbeenprescribed.DonotgiveH.P.ActharGeltootherpeopleeveniftheyhavethesamesymptoms.Itmayharmthem.PleaseseethefulllistofwarningsprecautionsandadverseeventsinthefullPrescribingInformationforActhar.Discussthisinformationwithyourhealthcareprovider.Findoutmore.Askyourhealthcareproviderorpharmacistgotowww.acthar.comorcall18004659217tolearnmoreaboutActhar.H.P.ActharGelandQuestcorareregisteredtrademarksofQuestcorPharmaceuticalsInc.2013QuestcorPharmaceuticalsInc.PM-01-01-00670713PrintedinUSA. 29MSFocusFall2013Thisisanintriguingquestionthatiswellbeyondanacademicinterest.ItisaquestionattheheartofeverypatientcaregivernurseorphysicianinvolvedinMScarebecauseprogressioninMSisassociatedwithsignificantlymoredisabilitythanrelapses.Toanswerthisquestionaccuratelyonehastodefinethetermsprecisely.InMStherearethreetypesofclinicalphenomenonthatcharacterizethediseasecourserelapsessubclinicalrelapsesandprogression.RelapsesRelapsesalsoknownasattacksorexacerbationsareduetoacuteinflam-matorylesionsinthecentralnervoussystemresultingindamagetomyelinanalogoustoanelectricalcablesinsulationandaxonsanalogoustoanelectricalcablecore.TheselesionsarewhatweseeinMRI.Thelesionliterallydampensorshutsdownthefunctionofthenervoussystemthatisservedbytheaffectedcableleadingtoavarietyofsymptomsrangingfromlossofvisiontodoublevisiontoabalanceproblemtoweaknesstonumbnesstobladdercontroletc.Howevermostofthesesymptomscomeduringthecourseofhourstodaysandstarttoimprovewithinweekstomonths.Thisrecoveryperiodisknownasremission.Remissioncansometimesbecompleteandsometimesbelimited.HencerelapsingremittingMSRRMSreferstoapersonwhoisinthisphaseofMS.SubclinicalrelapsesSubclinicalrelapsesrefertonewlesionsthatappearinMRIthathavenotcausedanoticeablesymptomtotheindividualoranexaminationfindingthatcanbedetectedbytheneurologist.IndividualswithrelapsingremittingMSalsohavesubclinicalrelapses.Indeedinmostindividualsthisoccursmoreoftenthanthesymptomaticrelapsesdiscussedabove.ThisiswhyMRImonitoringevenintheabsenceofsymptomshasbeenutilizedtofollowindividualswithMS.ProgressionAsopposedtothesituationinRRMSinwhichtherelapsesarediscreteeventswherethebeginningandusuallyendoftheeventcanbedefinedtheclinicaltermprogressiveMSreferstoaninsidiousonsetofneurologicaldysfunctionthatslowlygetsworseoverthecourseofyears.Commonexamplesofthiswouldbeslowlyworseningbalanceproblemsinthelegsoveryearsworseningbladderfunctionorslowlyworseningweaknessintheextremities.OnethingtobecarefulaboutisnottoconfuseprogressiveMSwithdisabilityprogression.Disabilityprogressionisa termusedoftenintreatmenttrialswhereserialmeasurementsareobtainedtoassessifapatienthasworseningdisability.Thisworseningdisabilityordisabilityprogressioncanbeduetorelapsesthatdonotrecoverfullyleavinganindividualwithdeficitsthataccumu-lateortheslowlyprogressivediseasecourse.MostofthesignificantdisabilityprogressioninMSisduetoprogressivediseasecourseandnotduetoincompleterecoveryfromrelapses.Thisisnottosayrelapsesarenotimportant.Theyarejustnotasbadorasimpactfulasaprogressivediseasecourse.SecondaryandPrimaryProgressiveMSWhenindividualsinitiallyhaveRRMSbutthendevelopaprogressiveMSthisisknownassecondaryprogressiveMSSPMS.HoweversomeindividualsstarttohaveprogressiveMSwithoutanyhistoryofaRRMScourse.ThisisthenknownasprimaryprogressiveMSPPMS.MostifnotallindividualsatthetimeofonsetofPPMSalreadyhavemultiplebrainandspinalcordlesionsthatsuggesttheyhadprevioussubclinicalrelapses.InanaveragepersonbothformsofprogressiveMSstartlaterinlifecomparedwiththeonsetofRRMSbetween35to55average45.Thereareofcourseexceptions.Progressivediseasecourseisgenerallyacceptedtobeduetoaslowbreakdownofpreviouslyinjuredareasofthecentralnervoussystembyrelapsesandsubclinicalrelapses.InflammationmayplayarolebutnotaverystrongoractiveroleasopposedtoRRMSwhereactiveinflammationassociatedmyelindamageistheprimarydriverofthenervoussystemmalfunction.OuravailablemedicationsforMSallworkbymodifyingorsuppressingtheinflammationassociatedwithRRMSandthereforedowellwithpreventionofrelapsesorsubclinicalrelapses.Thisleadstolessandslowerdisabilityaccumulation.UnfortunatelyandfrustratinglythereisnoevidencethattheavailablemedicationsworkenoughoratallforpreventionofaprogressivediseasecourseandtheassociateddisabilitywiththisphasesofMSotherthanpreventingsomeoftheongoingstrayrelapsesandsubclinicalrelapses.RevisitingtheQuestionInthiscontextthequestionposedinthetitlecanberestatedasDoallindividualswithMSdevelopaprogressivediseasecourseTheshortanswerisNo.InarecentarticlepublishedinMultipleSclerosisJournalMayoClinicresearchersincludingmyselfshowedthatifpeoplewithMSarefollowedlongenoughintheirlifetotheupperlimitsoftheonsetageforprogressiveMSthereisabouta25percentchancepredictedbysomecomplexmathematicalmodelsthatsomeofthemwillneverdevelopprogressiveMS.Theseindividualsgenerallyhaveaverybenigndiseasecourse.Ofcoursethisalsomeansthatthereis75percentchancethatanindividualwithRRMSwilldevelopaprogressiveMScourse.30MSFocusSummer2013 SometimesthetermbenignMSisusedtodefineindividualswhohadMSforalong-timeconsensusis15yearsormorebutdevelopedaminimumamountofphysicaldisabilitythatdoesnotimpacttheirday-to-daylife.ThisisinthesettingofnaturalcourseofthediseaseandintheabsenceofanytreatmentforMS.SeveralfactorsneedtobeconsideredinunderstandingwhatbenignMSreferstoamostifnotallbenignMSconsistsofindividualswhoneverdevelopedprogressivediseasecoursebthisdoesnotmeanallRRMSisbenign.Infactonly15percentofallMSwouldbebenignwhile25percentofallindividualswithMSwillnotdevelopprogressivediseasecoursecbenignMSonlyreferstophysicalabilitiesofanindividualthereforeindividualswithsignificantpsychiatricandcognitiveproblemswithperfectlynormalphysicalfunctioningwouldbeerroneouslyclassifiedashavingbenignMS.Sooverallabout10percentofallindividualswithMSreallyhaverealbenignMSnaturallyintheabsenceofanytreatmentforMS.ThisnumbershouldbehigherwithtreatmentsforMSwhichpreventdisabilityinducedbyrelapsesandsubclinicalrelapsesbutlikelynotexceeding25percent.ThisisbecausetheavailablemedicationsforMSasmentionedbeforeunfortunatelydonotseemtopreventaprogressivediseasecourse.OnecanthanconcludethatiftherewasnoprogressiveMScoursethenmostofthedisabilityduetoMSwouldnotexist.ThereforeonceandifwecanunderstandwhysomeindividualsdonothaveaprogressivediseasecoursewecanhelptheothersbyhopefullydevelopingsomenewtreatmentstrategiestopreventprogressiveMS.ThisisthenewfrontierinMS31MSFocusSummer2013OrhunH.KantarciM.D.isanationallyrecognizedmultiplesclerosisexpert.HereceivedthedistinguishedNATOsciencefellowshipaward1998andtheNationalMultipleSclerosisSocietyAdvancedFellowshipaward1999tocompletehispost-graduatetrainingandextendhisworkongeneticdeterminantsofthenaturalhistoryofMS.Dr.KantarcisresearchbeforeandduringthistimeresultedinfurtherestablishingthedirectionofgeneticepidemiologystudiesinMStowardsunderstandingthegeneticdeterminantsoflong-termoutcomeinMSasopposedtostudyingthedeterminantsofsusceptibilityinMS.ThisbodyofworkwasawardedtheDepartmentofNeurologyResearchAwardinclinicalneurologyasafellowoftheMayoGraduateSchoolofMedicineMayoClinicandFoundationin2002.HisworkinunderstandinginheritanceofMSwasawardedtheFoundersAwardbytheAmericanAcademyofNeurologyin2005.HisactiveresearchareafocusesonunderstandingthenaturalcourseofprogressiveMS.Aboveallheisanactivelypracticingclinician-scientistspending70percentofhistimeatworkinseeingpatients.HeiscurrentlyanassistantprofessorofneurologyattheMayoClinicRochesterMinn. MSFocusFall201332AlthoughsharingpersonalinformationaboutMSwithsomeonecanbedifficultresearchfindingssuggestthatthereareemotionalandpracticalbenefitsofdisclosingincludingareductioninstressandincreaseinwell-beingformanypeople.YetMSdisclosureisoftendependentuponcontextincludingyourrelationshipwiththepersonreasonsforwantingtosharethisinformationandevenpossiblerisksmakingaone-size-fits-allapproachdifficult.Answeringthefollowingquestionsaboutdisclosurecanguideandtailoryourapproach.WhydoIwanttodisclosemyMSUnderstandingyourpersonalreasonsforwantingtosharethisinformationcanhelpguidewhoyoudecidetotell.CommonreasonsoftenincludeTonotgothroughtheexperienceofMSaloneTohelpsomeoneclosetomelikeaspousefriendcoworkerunderstandmylimitationswithcertainactivitiesTorequestMS-relatedaccommodationsatschoolorworkTomeetandlearnfromotherslivingwithMSTodiscussmychallengesrelatedtoMSemotionalphysicalcognitivefinancialetc.TocelebratemyachievementsinspiteoforevenbecauseofMSToaskforassistancehelpwithmedicationshealthcarehouseworktransportationetc.ToeducateothersaboutMSToplanforthefutureToshareanimportantpartofwhoIamWhodoIwanttoknowaboutmyMSSomepeoplefeelcomfortablesharingtheirexperiencesofMSwithmanypeoplewhereasothersaremuchmoreselective.Thereareprosandconstoeachapproach.Widedisclosurecanpotentiallyopenoneuptostigmaorevenrejection.Howevertellingveryfewpeopleforegoesthetremendouspotentialforsupportcompassionandintimacythatcomefromtakingthisrisk.Immediateandextendedfamilyco-workersemployerscareprovidersacquaintancesfromchurchdatingsocialclubsandspiritualleadersareexamplesofpeoplewhomyoumighttellaboutMS.Peoplesuchascareprovidersareessentialtowellnessandshouldbekeptup-to-dateonMSregularly.OntheotherhandsharinganMSdiagnosiswithafriendmaynotbeabsolutelynecessarybutcouldrelievefeelingsofisolationandincreaseoverallqualityoflife.Toolittlesocialsupportcanincreaseanindividuals 33MSFocusFall2013riskofdepressionwhichcaninterferewithtreatmentadherenceandhealthoutcomes.Oneareaofconcernformanyisdisclosuretopotentialcurrentemployers.Inthepre-employmentphaseyoudonothavetotelltheemployeryouaredisabledunlessyouarerequestinganaccommodationfortheapplicationprocess.Onceajobofferhasbeengivenbutbeforehiringiscompleteanemployermayrequiremedicalexaminationbutmaynotaskaboutmedicalconditionsinanyothercontext.DisclosingaMSdiagnosistotheassessingphysicianwhoisdeterminingiftheapplicantismedicallyabletodothejobisrequiredbuttheMSdiagnosiscanremainconfidential.IftheemployermakesahirewithoutaskingaboutmedicalconditionsorifaMSdiagnosisisreceivedafterhiredisclosureofadisabilitymaybenecessaryifjob-relatedaccommodationsarerequestedorifthereisobjectiveevidencethattheemployeespoorjobperformanceisrelatedtomedicalcircumstances.DisclosureofMSspecificallyisrequiredonlyifthepositionrequiresperiodicmedicalexaminationsi.e.pilots.ForadditionalinformationaboutthelegalobligationsrelatedtodisclosureconsultationwithaknowledgeableorganizationliketheMSForanattorneycanbehelpful.AspartofageneraldisclosurestrategymakealistofthereasonsyouwantotherstoknowaboutyourMS.Thenmakeasecondlistofthepeopleyoucurrentlyknoworcouldgettoknowwhomyoumightwanttotell.Strivetofindthebestmatchbetweenyourneedsandwhocouldbestfulfillthoseneeds.Brainstormingwithaclosefriendorfamilymembermayhelpyoutoidentifypeopleyoumightnothaveconsideredonyourown.WhatdoIwantthemtoknowWhatandhowmuchyousharewilldependuponthepurposeofdisclosureandthepersonreceivingit.InsomecasesIhaveMSmaybeallthatisnecessarytosay.OthersituationssuchascopingwithdepressionorchangesinMSfunctioningwilllikelycallformoreinformation.IfthepersonyouaredisclosingtopushesformoreinformationthanyouwanttogiveitisperfectlyacceptabletosayIappreciateyourinterestinlearningmoreaboutmyMS.RightnowthisiswhatIamcomfortablesharing.WhenandhowdoItellthemFordisclosuresthatfeelriskybecauseofwhowillreceivetheinformationorwhatyouplantoshareconsiderthefollowingguidelinestoimprovechancesforapositiveresponseAllowenoughtimefordisclosureandforanexchangeofthoughtsfeelingsandreactions.Pickadaytimethatyouarelikelytobephysicallyemotionallyandcogni-tivelyatyourbest.Withanewrelationshiplikearoman-ticpartneragoodgeneralapproachtodisclosingistowaitlongenoughbutnottoolong.ItisnormaltowantsomeonetogettoknowyouasawholepersonnotjustyourMS.Additionallyonceapositiveimpressionhasbeenformedpeopleoftenaremorewillingtoworkthroughchallengesthatcomeup.Shouldtherelationshipprogressanddeepenwaitingtoolongcanbeseenasabetrayal.Makeabriefdisclosurescriptofkeypointsincludingwhatyouwanttoshareandwhyyouchosethisperson.Haveatrustedpersonprovidefeedback MSFocusFall201334onthescriptmakingadjustmentsifneededandthenpracticeonyourown.ForMSdiseaseandtreatmentspecificshaveafewinformationalbrochuresavailablelikethosefoundatMSFocus.org.Bepreparedforavarietyofresponsesandremembertheworst-casescenarioisalsooneoftheleastlikely.Reallytryandlistentotheotherpersonespeciallyiftheresponseisdifferentthanexpected.ItmayhelptoreflectonthemanysometimesconflictingthoughtsandfeelingsyouhadafterreceivingaMSdiagnosis.Somepeoplemayneedtimetoprocesstheinformationbeforetheycanfullyrespond.Ifanyonebeginstofeeloverwhelmedcallatime-out.SayIappreciateyoulettingmesharethiswithyouandIknowitisalottotakein.Whydontwetakeatime-outandplantorevisitthisconversationagaininthenearfutureFinallyevenwithcarefulplanningnoteverydisclosurewillgoashoped.Itisimportanttotakecareofyourselfandgetsupportthroughoutthedisclosureprocess.Althoughsharingthispartofyoumaytakepracticeandsomeriskthepotentialpayoffsinthelongrunarefrequentlyworthit.SeeLaraSteplemansbioonpage9. MSFocusFall201335AmyMandel-CartyDiagnosedin2012IwasatthetimePTApresidentandanactivemom.ItoldmyPTAboardandtheschoolstaffassoonasIwasdiagnosedsinceIknewIwouldneedextrahelp.TheresponseIgotwaswhatIexpectedfromthisgreatgrouptheywereupsetconcernedandassympatheticastheycouldbe.IlastedaspresidentuntilNovemberthenIhadtoresign.Theschooladministratorswhereextremelyunderstandingandwerewonderful.TheresponseIhavegottenfromothershasbeengreatalso.Ihavehadoffersofhelpingwithmyhousestufftohelpingmerunerrands.IamblessedtohavesuchagreatsupportsystemKellyYoungIwasdiagnosedin1991.Tellinglovedoneswasntthetoughpart.AdmittingtomyselfthatIcouldntdothisorthatanymorewastheproblem.AndIstillhavethatproblemtoday.Stubbornmen.BriannaLeighDelmueIletmyfamilyandfriendsknowassoonasIwasdiagnosedJune2013.IevencreatedmyownFacebookpagetopostinformationonthediseaseandhowitisaffectingmylife.Theresponseshavebeennothingbutsupportivesofar.MarthaPhillipsItoldpeoplerightawayIthoughtitwouldkeepmefrombeingindenial.Ithinkmyfamilysresponsewasoneofdenial.ItoldmyemployerrightawayaswellandwhenIgotadefinitediagnosisIquitmyjobsoIcouldrestandgetbetter.RashellMcCartyItwasnthardtotalkaboutmyMStofriendsfamilyandco-workers...anyonereally.Itwasmoredifficultformetounderstandandknowthatthiswasrealformyself.TorealizeyesIhavethisandnothereisnocure.Itbrokemyheartoverandover.ButIhaventbeenafraidtotellpeopleIhavethisdisease.IlookfinebutImtoreupinside.FUMSIwasdiagnosedin2008.Itoldmyfamilyandfriendsimmediately.Weallawaitedthetestresultstogether.TheyvebeenincrediblysupportiveImverylucky.IwasntplanningontellingmyemployeruntilIhadworkedthereforafewmonthssotheycouldseewhatIcoulddobeforetheydecidedwhatIcouldntdo.UnfortunatelyIwasoutedbyaneighborwhoseintentionwasgoodbutwhosetimingwasbad.MyemployerhandleditreallywellrightuntilIhadtoleavemyjobbecauseofMS.Theyrestillsupportivetoday.LikeIsaidImlucky.SusanSpencerFisherIwasdiagnosedin91.MyfirsthusbanddidntbelieveinMSsoIhiditasbestIcouldandwasmiserableuntil2004.ItoldmynowawesomehusbandimmediatelyandhaventkeptittomyselfsinceandImhealthierforit.ThisistheonlylifeIvegot...Imlivingitintruth.FacebookFeedbackisyourchancetoshareinadvanceyourexperiencesrelatedtotopicscoveredintheMSFocus.TocontributeonanupcomingtopicLikeourFacebookpageatwww.facebook.comMultipleSclerosisFoundationandwatchforournextFacebookFeedbackpost. 36MSFocusFall2013MynameisMaryAnnMcCulloughandIhavebeenlivingwithMSsincethesummerof1998.WithinthelastfewyearsIfindmyselfinawheelchair.IhavebeenamemberoftheNationalMSSocietyNMSSforthepast12years.FormostofmylifewithMSIdidnotknowoftheMultipleSclerosisFoundationMSFthenthephonerang.OneafternoonIreceivedacallfromtheMSFaskingforadonation.MyreplywasIwouldlovetohelpknowingMSisaworthwhilecauseconsideringImyselfamafflictedwithMS.AverysweetpersonontheotherendofthephonesaidshewasntawarethatIhadMS.IwentontoexplainmysituationtoherandthenshetoldmetheMSFofferedprogramsImightbeeligiblefor.ShetransferredmetotheAssociateDirectorofHomecareandPatientAssistanceProgramsthewonderfulSherrolPatterson.SherrolandIspokeforquitesometime.SheexplainedtomethattheMSFandtheNMSSwereseparateorganizations.SheaskedifIhadaccesstoacomputerthendirectedmetotheMSFwebsitewhereIcouldfindtheprogramsthatareavailabletoallMSpatientsthatmeetthefinancialqualifications.InthemeantimeshetookmyaddressandmailedmeanapplicationtofilloutalongwithsomerecentissuesofMSFocusmagazine.IwasinneedofaphysicaltherapybutwithoutmedicalinsuranceIcouldnotreceiveany.Loandbeholdtomysurprisephysicaltherapyfellunderoneoftheprogramslisted.AftermyeligibilitywasconfirmedandmyneurologistwroteaprescriptionforphysicaltherapyandoccupationaltherapyaswellSherrolgottheballrolling.Thephysicaltherapistarrivedfirsttoopenmycase.Sheaskedquestionstookmytemperaturepulseandbloodpressure.Afterfindingmybloodpressuretobe180over100sheaskedifIhadahistoryofhighbloodpressure.Sheinformedmeitwastoohightobeginanyexercisingthatday.Inturnshecalledoneoftheirnursesandtoldherofmysituation.Thenursewasveryconcernedandcametoseemethenextday.Shetookmybloodpressureitwas230over110alarminglyhigh.ItoldherIwasntawareofhavinghighbloodpressurenorwasIhavinganyofthesymptomsshementioned.ShewasflooredwhenItoldherIdidnothaveaprimarycarephysician.SheadvisedmetogotothenearestemergencyroombecausewithbloodpressurethathighI 37MSFocusFall2013wasatriskfordevelopingastroke.ShewassoconcernedsheescortedmetothecarandwouldntleaveuntilmyhusbandandIwerereadytogo.AttheERitwasdeterminedthatwequalifiedforcharitycareduetoourfinancialsituation.IreceivedbloodpressuremedicationwasplacedonbloodpressuremonitorwasgivenanEKGachestx-rayurineandbloodtests.Ileftwithalimitedsupplyofbloodpressuremedicationandinstructionstofollowupwithaprimarycarephysicianattheclinicassociatedwiththehospital.AttheclinicIwasseenbyawonderfulphysicianwhoexaminedmeandchangedmymedicationtosomethingstronger.Herecommendedafollow-upinamonth.IntheinterimIreceivedphysicaltherapyoccupationaltherapyandevenspeechtherapy.EachtherapistcametomyhomeandIfoundthemtobeonenicerthantheother.ThankGodmybloodpressureisundercontrol.NotlongafterallthishappenedIlostmymother.HadInotfoundoutIhadhighbloodpressureandbeengivenmedicationtokeepitundercontrolbeforemymotherpassedIshuddertothinkwhatmighthavehappenedtome.IhadnoideatheMSFexisteduntilIreceivedthatcallaskingforadonation.IamsorrytosayIdontrememberthenameofthefirstlovelyladyIspokewithbuthadshenotbeensohelpfulinconnectingmewithSherrolIwouldstillbeinthedark.IwouldliketothankeachandeverymemberofthestaffattheMSFbeginningwiththefirstpersonIspoketoaskingmeforadonation.GodBlessAllofYouMaryAnnMcCulloughFormoreinformationontheMSFsHomecareAssistanceProgramortomakeadonationtotheMSFvisitwww.msfocus.org. 38MSFocusFall2013ByEllenWhippleGuthriePharm.D.UpdatesbythePharmacistwillspotlightthelatestsignificantresearchonMSmedicationsaswellaspharmaceuticalissuessignificanttoMScare.Noendorsementisimplied.NineyearsagothefirstcasesofprogressivemultifocalleukoencephalopathyPMLwerereportedinpeoplewithmultiplesclerosistreatedwiththedisease-modifyingdrugnatalizumabTysabrifromBiogen.PriortothistimePMLwasnotaconditionthoseintheMScommunitypatientscaregiverscliniciansknewalotabout.SincethistimeindividualswithMSandcliniciansalikehavelearnedmoreaboutPMLspecificallyhowtoavoidtherarepotentiallyfatalbraindiseaseinpeopletreatedwithTysabri.NewconcernsaboutPMLinpeoplewithMShaverecentlyemerged.InlateAugusttheU.S.FoodandDrugAdministrationFDAissuedaDrugSafetyCommunicationregardingfingolimodGilenyafromNovartisandPML.ThealertdescribedthecaseofaEuropeanpatientwithnohistoryofTysabriusewhodevelopedPMLaftertakingGilenyaforsevenmonths.TherehavebeenpreviouscasesofPMLreportedinpersonstakingGilenyahoweverinthosecasesthereportingphysiciansattributedPMLtopriorTysabritreatmentaccordingtoinformationfromNovartis.UnderstandingPMLPMLisademyelinatingdiseasecharacterizedbyprogressivedamageorinflammationofthewhitematterofthebrainatmultiplelocations.ItisatypeofpolymaviruscalledtheJCvirus.JCaretheinitialsfromthefirstpersonwhosebraintissuecontainingthevirusweresuccessfullycultured.Upto58percentofthegeneralpopulationhaspositiveantibodiesfortheJCvirushoweveronlythosewithalteredimmunesystemsaresusceptibletothevirus.ThethreeinitialcasesofPMLwithTysabrioccurredinpeoplewithMSalsoreceivingthedisease-modifyingdruginterferon-1aAvonexfromBiogen.AdditionalreportsofPMLhavealsooccurredinpeoplewithMSreceivingotherdisease-modifyingdrugsincombinationwithTysabrithereforeitisrecommendedthatTysabribeusedasmonotherapyinpeoplewithMS.TheriskofdevelopingPMLwithTysabrialsoappearstoberelatedtothelengthoftimereceivingthedrug.IndividualsreceivinglessthantwoyearsofTysabriaremuchlesslikelytodevelopPMLthanindividualswhoreceivegreaterthantwoyearsoftreatment.InadditionindividualswhoareJCvirusantibodypositivearemorelikelytodevelopPMLthanthosewhoareJCvirusantibodynegative.ItisimportanttonotethatpatientswhoareJCvirusnegativecanbecomeJCvirusantibody MSFocusFall201339positivethereforeJCvirusantibodytestingisrecommendedinJCvirusnegativepatientseverysixmonthswhilereceivingTysabri.GilenyaandPMLInthecasethatpromptedtheFDAsafetyalerttheindividualhadreceivedtreatmentwithaninterferonproductandazathioprineforonemonthbeforeinitiatingGilenyatreatment.ThosemedicationswerestoppedwhenGilenyawasstartedaccordingtoinformationgiventotheFDA.TheindividualalsoreceivedmultiplecoursesofintravenouscorticosteroidsforseveralmonthsbeforeandduringGilenyatreatment.ThePMLdiagnosiswasmadebasedonclinicalsymptomsandthedetectionofJCviralDNAinthecerebrospinalfluid.AccordingtotheFDAsDrugSafetyCommunicationPatientsshouldnotstoptakingGilenyawithoutfirstdiscussinganyquestionsorconcernswiththeirhealthcareprofessionals.FDAisprovidingthisalertwhilecontinuingtoinvestigatethePMLcaseandisworkingwithGilenyasmanufacturerNovartistoobtainandreviewallavailableinformationaboutthisoccurrence.FDAwillcommunicateitsfinalconclusionsandrecommendationsaftertheevaluationiscomplete.NotingthatNovartiswillcontinuetoworkwithhealthauthoritiesonthiscaseaNovartisspokespersonissuedthisstatementtotheMultipleSclerosisFoundationHavingreviewedallavailableinformationtodateNovartisconsidersthatseveralfeaturesofthiscaseofPMLmakeitunlikelytobeattributabletoGilenya.ExpertMRIreviewersfoundtheMRIlesionspresentpriortoinitiationofGilenyatobeatypicalandcouldnotexcludePML.ThepatientwasalsoexposedtorepeatednearlyeverymonthcoursesofcorticosteroidsbothpriortoandafterinitiationofGilenyaandonemonthexposuretoazathioprinecontributingtonetlevelofimmunosuppression.FurtherthepatientreceivedarelativelyshortsevenmonthexposureofGilenya.GilenyawasapprovedintheU.S.forrelapsingformsofMSin2010.EllenGuthriehasbeenamedicaladvisorwiththeMSFsince2002.SheisaclinicalpharmacistemployedasamedicalaffairsspecialistaswellasanAssistantClinicalProfessorattheUniversityofGeorgia.ShereceivedherdoctorateofpharmacydegreefromtheUniversityofGeorgiaCollegein1994andwaslateremployedattheShepherdCenterandChildrensHealthcareofAtlanta.EllenisanactivememberoftheGeorgiaSocietyofHealthSystemPharmacists.ShehasalsoservedonthePharmacyAdvisoryCommitteefortheDepartmentofCommunityandHealth.InformationregardingPMLandGilenyaisavailableatwww.fda.govSafetyMedWatchSafetyInformationSafetyAlertsforHumanMedicalProductsucm366751.htmwww.fda.govDrugsDrugSafetyucm366529.htm MSFocusFall201340Theever-changinglandscapeoffederalregulationsmedicaltechnologyandinsurancecoveragecanmakeonesheadspin.Thiscolumnspotlightsgovernmentresourcesavailabletoqualifyingpeoplewhohavemultiplesclerosisandotherchronicillnesses.TakeaBreakwithHelpfromUncleSamFamilycaregiversneedtohavesufficientandregularamountsofrespitetime.Respiteneedstobemeaningfulandpurposefulforcaregiverstofulfilltheirneedsandplansaswellassafeandenjoyableforthecarereceiver.Respiteismosteffectivewhencombinedwithotherservicesandassistance.Tobemosteffectiveyoushouldconsiderrespiteservicesmuchearlierthanyouthinkyouwillneedthembeforeyoubecomeexhaustedisolatedandoverwhelmedbyyourresponsibilities.Somerespiteprogramsmayutilizeanavailablebedinahealthcarefacilityforfamilieswhorequireextendedrespiteoptionsandwhosefamilymemberorfriendrequiresskilledcarewhereasotherrespiteprogramsmayonlyoffertime-limitedafewhoursservicesinthefamilyshome.Inadditionrespiteservicesmaybeavailabletofamiliesthroughformalprogramsi.e.trainedstafformaybeavailabletofamiliesthroughinformalnetworkse.g.parentcooperativesorcashsubsidiesfromstatestopurchaserespitethroughrelativesandfriends.Since2009theU.S.AdministrationonAginghasfunded30statesandtheDistrictofColumbiatoimplementStateLifespanRespiteProgramswhicharedesignedtohelpfamiliesfindrespiteprovidersandtohelpthemaccessrespitepaymentresources.Manyofthestateprogramsarestillintheirearlyimplementationphasebutareavailabletoassistfamiliesinnavigatingthemazeofrespiteprogramsandfundingstreamsbyofferingasinglepointofentryforrespite.YourfirststopforinformationshouldbetoyourstatesLifespanRespiteProgramifithasone.IfyourstatedoesnothaveaStateLifespanRespiteprogramfirstchecktheARCHNationalRespiteLocatortofindemergencyorplannedrespite.YoucanalsocheckwithyourStateRespiteCoalitionanAgingandDisabilityResourceCenterortheEldercareLocatorService.PrivateorganizationssuchasEasterSealstheAlzheimersAssociationNationalMultipleSclerosisSocietytheALSAssociationUniversityCentersonDisabilitiesorUnitedCerebralPalsymayalsobeabletoreferyoutorespiteservicesinyourcommunity.TofindfamilycaregiversupportandassistancevisittheFamilyCaregiverAlliancesFamilyCareNavigator.IfyouareaveteranorthefamilycaregiverofaveterancalltheVACaregiverSupportLineat1-833-260-3274orvisittheonlineVACaregiverSupportCenter. 42MSFocusFall2013MULTIPLESCLEROSISAGUIDEFORTHENEWLYDIAGNOSED2013DEMOSMEDICALPUBLISHINGThisbookwaswrittenspecificallytoaddresstheneedsquestionsandconcernsofthoseindividualswhohavebeennewlydiagnosedwithmultiplesclerosis.Italsoservesasalearningtoolforthefriendsandfamilyofthosewhohavebeendiagnosed.Theguidediscussestheuniquequalitiesofmultiplesclerosisandhowthediseaseaffectsthedailylifestylesofthosediagnosedandthosearoundthem.ItaddresseshowtodealwiththediseaseinitsentiretygoingoverdifferentaspectsofMSandnewdevelopmentsinclinicalmanagementthatnotonlyencouragebutalsomakeitcompletelypossibleforindividualslivingwithMStobeabletoliveafulfillingandproductivelife.AgreattoolforlookingupbasicquestionsregardingthediseasemostquestionscanbeansweredbyreferringtotheglossaryofthebookwhichalsohasgreatsuggestionsforothermaterialreaderscanusetobroadentheirknowledgeofMS.DREAMS2013AcordaTherapeuticsKristieKentvividlydescribeshowmultiplesclerosischangedherlife.DreamsandatalentforsinginganddancingatayoungageareplacedonholdwhenKentstartstoshowsymptomsofMSwhichdirectlyimpactherperformance.Kentadmitstobeingindenialinthebeginningstageswhichlastafewyearsbutshedoesnotallowthisdiagnosistogetinherway.ThroughoutthebookKentdoesnothesitatetoshowtheupsanddownswhenitcomestoherlifewiththediseaseandenablesustoseethebeforeandaftereffectsofherlifeonceMSbecomesavariable.KentisamotheroftwoandcontinuouslytravelsacrosstheU.StobealivingtestamentandareassuringvoiceforthosewhohavebeendiagnosedwithMS.ShehopesthatherstorywillhelpotherstounderstandTheworddreamsmayendinMSbutMSdoesnthavetoendyourdreams.ToborrowtheseandothertitlescalltheMSFLendingLibraryat1-888-MSFocus673-6287orvisitwww.msfocus.org.ClickonLendingLibraryundertheProgramsandActivitiesheading. 57MSFocusFall2013 44MSFocusFall2013 45MSFocusFall2013ByJoanneFortunatoLearningtousetechnologycanbeoverwhelmingandevenscaryandifyouhaveadisabilityitcanseeminsurmountable.Howeveronceyoustartusingtechnologyyouwillwonderhowyousurvivedwithoutit.IwasdiagnosedwithMSin2006.Ihavebeenusingandteachingtechnologyforabout30yearsandduringthattimeIhaveconcludedtheinformationalandorganizationalbenefitsmaketechnologyanimportanttoolforeveryonebutespeciallysomeonewithMS.MS-Tech101willbearegularcolumnintheMSFocuswhereyoucanfindinformationonthemanywaystechnologycanhelpyouimproveyourqualityoflife.Thiscolumnwilldiscusstabletsoneofmyfavoritetechnologytools.WhyshouldyouuseatabletinsteadofadesktopcomputerThereareseveraladvantagesofatablet.Theprimaryadvantageisthesizeandmobility.Tabletsrangefromabouta7-inchtoa10-inchscreen.Theyarelightweightandportable.Manytabletswillfitinbagsthatyoumightcarrytodoctorsappointmentsorelsewheresuchastotraveldestinations.Inadditiontabletsareveryversatile.Theycanbeusedasanorganizingtoolforkeepingallofyourimportantinformationinoneplacesuchascalendarappointmentsandphonenumbers.WithatabletaccesstotheinternetisseamlessprovidedyouhaveaWi-Ficonnection.Wi-Fiisjustamethodforaccessingdataovertheairsimilartocellularphones.GettingWi-Fiinyourhomeifyoudontalreadyhaveitisnotasdifficultasyoumightthinkbutdoescarryafee.ManyplacessuchascoffeeshopsorahotelswillsupplyaWi-Ficonnectionforfreeoranominalfee.AWi-FiconnectiongivesyouaccesstoawidevarietyofinformationanditisusefulforjoiningonlinegroupsanddoingresearchonjustaboutanytopicincludingthelatesttreatmentoptionsforpeoplewithMS.Itcanalsobeusedasane-reader.WhenyoucantgettoalibraryyoucanuseatablettoborrowBenefitsofTabletsforPeoplewithMS MSFocusFall201346bookswithoutbeingtherephysically.Youcancheckoutavarietyofcontentsuchase-booksoraudiobooksfromalmostanywhere.ChoosingaTabletTherearesomanytabletsonthemarketthatchoosingwhichtablettouseorbuycanbeadauntingtask.TherearebasicallytwotypesoftabletsAndroidandApple.AniPadusestheAppleoperatingsystem.TheappsandsoftwareareproprietaryandcanonlybeusedwithAppleproducts.Whilethereareplentyofchoicesforappsyouarelockedintoonecompanyforproducts.Appletabletsarefrequentlymoreexpensiveandgenerallythereislittleornocompetitiononprice.HoweverIfindAppleproductstobemoreuser-friendlyandthequalityoftheproductsisgenerallybetter.TheAndroidoperatingsystemisownedbyGoogle.TherearemanymoretabletsthatruntheAndroidOSthanApple.OnedrawbacktoanAndroidtabletisthatsomecompaniessuchasBarnesNobleandAmazonaregearedtowardsbuyingcontentfromthestoreandthetabletitselfisnotquiteasuser-friendlyasApple.Theyalsotendtohaveadsfortheirproductsandyousome-timeshavetopayextrafortheseadstoberemoved.AndroidtabletscancostsignificantlylessthanAppleandaregenerallyjustasfunctional.Astheuseoftabletsbecomesincreasinglymorepopularthelandscapeofthistypeoftechnologyischangingandusershavemanymoreoptions.Whichtabletyouchoosedependsonhowyouplantouseitandwhatyoucanaffordeitherwaybothtypesoftabletshaveplentyofcontentavailableandfunctioninnearlythesameway.LearningtouseaTabletLearningtouseatabletmayseemlikeamajorhurdle.IamworkingwiththeMultipleSclerosisFoundationtoteachpeoplewithMStolearnhowtousetabletstohelpwiththeeverydaytaskstheyarefacedwithduetothenatureoftheirdisability.SoonIwillbeginrecordingvideostodemonstrateboththeAppleandAndroidtablets.WhencompletedtheseinstructionalvideoswillbepostedontheMSFwebsite.WhenIwasdiagnosedwithMSIfoundthatmyskillsandtrainingwereahugebenefitwhencopingandfindingstrategiesfornavigatingthedifficultworldofMS.ItismygoaltohelpotherswithMSrealizethesamebenefitsofusingtechnology.JoanneFortunatoB.S.M.A.isaretiredcomputertechnologyteacherinTroyN.Y.ShehasamastersdegreeinEducationandhasbeenteachingtechnologytoteachersandstudentsfor30years.ShehaspublishedseveralarticlesandbooksoneducationalcomputertechnologyincludingseveralarticleswiththeInternationalSocietyforEducationISTE.ShewasdiagnosedwithMSin2006andusestechnologytoaidincopingwiththemanydifficultiesthatMScanpresent.Sheisexcitedtosharethisinformationwithothersthatdealwiththesameandmanyotherissuesonadailybasis. 48MSFocusFall2013ItwillbeokaybecauseGodwantstoprotectthebaby.ThisistheanswerIreceivedfromtheneurologistwhenIaskedhimaboutbeingabletohavechildreninadditiontoamillionotherquestionsasIsatsobbinguncontrollablyinhisofficeafterreceivingmyMSdiagnosis.Itwasaroughdayasitisformostofusfindingoutwehavethisdisease.Ifounditastrangebutsomehowcomfortingresponsefromthedoctor.IwasnotevensureIwantedchildrenatthatpointbutwasscaredIwouldnthavetheoption.MyhusbandandIwouldoftendiscusswhetherornottohavechildren.Heultimatelydidnotwanttostartafamily.Infactturnsouthedidnotwanttobemarriedatallandtookoffafterthreeyearsofmarriage.WedivorcedwhenIwas32.Inmyheadchancesofhavingkidsandafamilyofmyownwerenotlookingsogood.SorememberthatmovieKnockedUpYeahitskindoflikethat.IamasIwritethis34yearsoldandeightmonthspregnant.IamsinglescaredoutofmymindandatthesametimeexcitedforthisnewchapterinlifethatIthoughtatonepointImightnotgettoexperience.ThoughitwasnotplannedandIamunmarrieditisofcourseablessingandblahblahlikeeveryonealwayssays.IfMurphyBrownandJustinBiebersmomcoulddoitIcantoorightIamnervouswhenIthinkaboutthefutureofbeingamomanddealingwithMS-relatedissues.WillIhaveenoughenergyformotherhoodWhatifIamincapacitatedforperiodsoftimeatsomepointsThesealongwithmanyotherquestionsplaguemymindandofcourseIworry.ButfornowIamjusttryingtoconcentratemostlyonthepresentmoment.Pregnancyhasnotbeentheeasiestofroads.Inthebeginningthesicknessandnauseacanbesobad.YoucannotbarfuptheactualbabyrightAlsothecostofhavingababyjustseemsridiculous.IsthestorecalledBuyBuyBabybecauseyouactuallyhavetosellyourbabyinordertoaffordthepricesPregnancyisstressfulenoughwithoutadditionalhealthissuestotakeintoconsideration.Consideredhigh-riskduetotheMSandmyhypothyroidismitseemsthemajorityofmytimehasbeenspentatvariousdoctorsofficesallthewhilebeingfreakedoutsomethingwillgowrongasprobablymanynewparentsare.ResearchmaybeconflictingastowhetherornotIshouldgetanepiduralbutIamgettingthatepiduralasgivingKnockedUpKnockedDownByMarissaBenni MarissaBenniisfromGlenwoodIll.andsheworksinresearchattheUniversityofIllinoisatChicagoUIC.ShehasaBachelorofArtsandaMasterofSciencedegreefromDePaulUniversity.ShehasbeenlivingwithMSandwritesfrompersonalexperience.MarissaandbabyKristahadasuccessfuldeliveryandaredoingwellthoughbotharetiredfussyandcrabby.MSFocusFall201349birthwithoutitseemsbarbarictome.AftermeetingwithananesthesiologistatthehospitalIwasassuredthatanepiduralcouldbegiven.IhopethisisstillthecaseandeveryoneisstillonthesamepagethedayofthedeliveryasIpicturemyselfturningintotheExorcistgirlifdenied.OndaysthatarereallyastruggleIpictureSamanthafromSexandtheCitygivingthatspeechatacancerbenefitinfrontofotherwomenwithcancer.Shetakesherwigoffandjustsaysforgetit.Sheishavinghotflashesfromthechemotherapyissweatingfromherwigandtiredofpretendingsheisokay.Iamdefinitelynottryingtocomparemyselftosomeonewithcancerbutthinkthatscenedemonstratesthestrengththatcomesfrombeingreallevelingwithpeopleandnothidinghowoneisfeeling.Itseemsbeingopenandhonestcandowondersforthepsyche.IhavelearnedtocommunicatemorewithothersabouthowIamfeelingandtoaskforhelpwhenneededwhichhasbeendifficultformetodointhepast.Iamtryingtostayfocusedandpositivedespitebeinguncomfortableinpainandbarelyabletogetoutofbedsomedays.ThebabyisagirlwhowillbenamedKristaAmberBenniaftermysisters.IfitwasaboyitwouldhaveforsurebeenMontelWilliamsBenni.GoodolMontelisapinnacleofstrengthandvoiceforthoseofuswithMS.IthinkitisimportantforallofusdealingwithMSpregnancyorwhateverissuesthatmayariseinlifetorememberwordsfromthesongTubthumpingbyalittlebandcalledChumbawumbaIgetknockeddownbutIgetupagainyourenevergoingtokeepmedown.Wearestronganddespitewhatlifethrowsourwaywewillgetupagain.WealldowhatwecanthroughoutpregnancyillnessandlifeingeneraltotakecareofourselvesandbeashealthyaspossibletherestisinGodshands.IlookforwardtotheroadaheadandwouldliketoclosewithaquotefrommysisterKristawhowillbethebabysnamesakeIlikeditbetterwhenyouhadaboatbutababywillbecooltoo. PatientInformationTECFIDERAtekfiderahdimethylfumaratedelayed-releasecapsulesWhatisTECFIDERABeforetakingandwhileyoutakeTECFIDERAtellyourdoctorifyouhaveorhavehadTellyourdoctorifyouareHowshouldItakeTECFIDERAWhatarethepossiblesideeffectsofTECFIDERATECFIDERAmaycauseserioussideeffectsincludingdecreasesinyourwhitebloodcellcountThemostcommonsideeffectsofTECFIDERAincludeFormoreinformationgotodailymed.nlm.nih.gov.GeneralInformationaboutthesafeandeffectiveuseofTECFIDERAWhataretheingredientsinTECFIDERAActiveingredientInactiveingredientsCapsuleShell 53MSFocusFall2013AslatesummerfadedintoearlyfalltheMSFcouldbefoundontheroadincommunitiesthroughoutFloridaGeorgiaAlabamaandMassachusetts.OurteleconferenceonImprovingMobilitybyManagingFatiquereachedanation-wideaudiencewithphysicaltherapistandMSspecialistHerbKarpatkinpresentinghelpfuladviceonthetopicfollowedbyaninformativequestionandanswersession.ThosewhoattendedtheSoartoNewHeightswithMSprogramonAug.6thinWarnerRobinsGa.werelikelyinspiredtodojustthatbyspeakerSudhirAthniM.D.ButforaddedinspirationtheprogramwassetinTheMuseumofAviationthesecond-largestaerospacemuseumoftheUnitedStatesAirForce.TofindoutifanMSFeducationalprogramwillbearrivinginyourneighborhoodintheupcomingmonthsjointheMSFsFacebookpageatwww.facebook.comMultipleSclerosisFoundation.HereswherewevebeeninthepastfewmonthsJuly24thTeleconferenceonImprovingMobilitybyManagingFatiguebyHerbKarpatkinPTDScNCSMSSCacertifiedMSClinicalSpecialistandClinicalNeurologicalPhysicalTherapist.ThisprogramwassupportbyaneducationalgrantfromAcordaTherapeutics.Aug.6thTheMuseumofAviationWarnerRobinsGa.SoartoNewHeightswithMSbySudhirAthniM.D.NeurologyofCenterGa.AndtheRegionalMSCenterinMaconGa.Sept.25thCollegeParkGa.TheImportanceofAdheringtoYourMSTherapybyColbyDoepelNP-CfromShepherdCenterSept.26thStoneMountainGa.TheImportanceofManagingYourMSSymptomsbyKimMiechielsPA-CfromShepherdCenterOct.3rdWorcesterMass.TheImportanceofAdheringtoYourMSTherapybyMariaDayawM.D.fromtheCenterforMultipleSclerosisatMilfordRegionalCenterOct.7thDothanAla.MSDoesntHavetobesoScarybyLindaMardenM.D.aneurologistfromtheDothanNeuroscienceCenterOct.8thPanamaCityFla.MSDoesntHavetobesoScarybyneurologistHodaElzawahryM.D.WereontheroadagainTofindoutiftheMSFwillbevisitingyourlocalcommunitystayconnectedviaourFacebookpageatwww.facebook.comMultipleSclerosisFoundation.MEEITSALLABOUTMotivatingEducatingEmpoweringMULTIPLESCLEROSISFOUNDATIONMEEITSALLABOUTMotivatingEducatingEmpoweringMULTIPLESCLEROSISFOUNDATION 54MSFocusFall2013GiveBackDayfortheMSFatRubyTuesdayFairhopeAla.ThisongoingfundraiserinFairhopeAla.issponsoredbytheindependentEasternShoreMSSupportGroupthatmeetsregularlyattheirlocalRubyTuesdayrestaurantsecondWednesdayofthemonth.HowitworksGiveBackflyerswiththedatesofthepromotionarehandedoutpatronspresentittotheirserverand20percentoftheirpurchaseisdonatedtotheMSFitsthatsimpleTheFairhopeflyerismailedandhandedoutlocallyandwepostitonMSFsFacebookpageseveraldaysbefore.Anybodycanuseitatthelocationyoudonthavetobeamemberofthegrouporattendameetingforyourpurchasetocounttowardsthe20percentInterestedinsponsoringaGiveBackfortheMSFatyourneighborhoodRubyTuesdayCallourofficetoll-freeat800-225-6495andaskHildyformoreinformation.June25thSpiritNightattheGarlicKnotrestaurantinOaklandParkFla.AlexGiampietroistheowneroftheGarlicKnotanItalianeaterywithseverallocationsinColorado.SinceopeninghisfirstEastCoastrestaurantinSouthFloridahescontinuedthecompanysSpiritNighttraditionwithaportionofadaysworthofsalesgoingtoalocalnon-profit.TheMSFreceivedproceedsfromdiningdeliveryandtake-outordersonJune25thwiththeGarlicKnotdeliveringMSawarenessalongwithitstastypizzaandpastatocustomers.July20thDancingforaCauseinTampaFla.HostedbyDancinMotionSchooloftheArtsowneranddanceinstructorMariaEspinozathislivelyMSfundraisingeventfollowedadaytimeOpenHouseforthenewstudiolocation.ClientsandfriendsdemonstratedtheirenthusiasmbydancingthenightawayandMariawastrulythegracioushostessgenerouslydonatinghalfoftheeveningscoverchargetotheMSF.July27thCandyforaCauseinTaylorMich.InspiredbyTaylors9thAnnualFRIENDSWalkJune13palsoforganizerSamaraWolfwantedtoaddtotheMSfundraisingeffort.SoonacloudyJulydayDritaManajJackieBrownJeffSherryMichelleSherryandSamaratooktothestreetsarmedwithbucketsandcandytoaugmenttheFRIENDSWalktotal.Afterseveralrainyhourstheyraisedmorethan500.Thenextwalkin2014theevents10thyearanniversaryisanticipatedtobethebiggestoneyetbyHildyBerger 55MSFocusFall2013August23rdSilpadaHousePartyinProvidenceR.I.Foundedin1997bytwostay-at-homemomsSilpadaisthelargeststerlingsilverjewelryhomepartybusinessintheworld.ThecompanyencouragescharitablegivingandweweresogratefulwhenDesignsRepresentativeSandraMedeiroscontactedustosayshewasdonatingtotheMSF.InAugustsheorganizedahousepartyshowcasingSilpadastop-qualityringsbraceletsnecklacesearringsandcharmswithaportionofthesalesbenefittingtheMSF.Theeveningwasagreatsuccessandguestscouldntresisttheallureofthestylishpiecesondisplay.ThankssomuchSandrashineonAugust30thTheDivineGiftShowcaseinVirginiaBeachVirg.TheDivineGiftShowcaseisafantasticeveningoflivemusicalentertainment.ProducedinconjunctionwiththeAnnualWomenofGreatnessRetreatandFamilyConferencethethree-dayeventishostedbyDivineConceptGroupafaith-basednon-profitorganization.ThisyearaportionofShowcaseticketsalesweregiventotheMSFanddirectdonationswerealsoaccepted.FeaturedperformersincludedYvetteWilliamsoftheKurtCarrSingersPeaceofMindMovementChangdC1TamlaYoungValerieWoodardTheSpiritualGiftsofWestTennesseeMaraSuggsTheTaylorSingersJubilantNationandShannonHipHopGospelPresley.ManythankstoeventcoordinatorErickaWardforherhardworkandadvocacyonbehalfoftheMSFSUPERHEROSCRAMBLEisaneliteobstaclecourseracerangingfromfourmilesofwickedterraintomarathondistanceforthosewhowanttochallengethemselvesbeyondafunrun.Runnerschargemoreobstaclespermilehavemorefunthanatamudrunandpartyunderthemoonlightwiththenightobstaclerace.AfterwardsicecoldbeerandrefreshmentsgreatfoodlivemusicandentertainmentawaitSUPERHEROSCRAMBLEareonamissiontobereallifeSUPERHEROEStothousandsofpeoplegiving5percentofeveryregistrationtocharity.TheyproudlysupportU.S.armedforcesveteranspoliceandfirefightersandrecentlypartneredwiththeMSFtohelpthosecopingwiththedailychallengesofmultiplesclerosis.CheckoutthecurrentscheduleofscramblesaroundthecountyforthosebraveindividualswhodecidetoregisterforanupcomingSuperheroChallengeintheirneckofthewoodsbesuretoindicatethatyousupporttheMSFhttpsuperheroscramble.comevent-locations 56MSFocusSummer2013YouwouldntthinkthatpeoplewhoserviceyachtsforalivingwouldbeputtingontheirhikingbootsandreachingfortheskyintheirsupportforthosewithMS.HoweverthisisexactlywhatemployeesfromQuantumMarineEngineeringdid.ThispastJulyagroupofintrepidadventurersbegantheirjourneyfromSouthFloridalandinginLondonEnglandtomeetupwithco-workersfromthecompanysNetherlandsheadquarters.TheirmissionadaringexpeditiontoconquertheUKsNationalThreePeaksChallenge.ThiseventfrequentlyusedtoraisemoneyforcharitableorganizationsrequiresclimberstoscalethehighestmountainsofScotlandBenNevis4409feetEnglandScafellPike3209feetandWalesSnowdon3560feet.Participantsclimbeachpeakinturnandaredrivenfromthefootofonemountaintothenextthechallengeistodothemallwithin24hours.QuantumemployeeshadtakenpartinlocalcharitableendeavorsbicycleridepokerrunSavetheSeaindustryeventsinpastyearsandchosetodonatetotheMSFthistimefollowingtheMSdiagnosisofseveralpeopletheyknow.Travelandexpensesweregenerouslycontributedbythecompanyandtrainingbeganinearlyspringwithdedicatedparticipantsscoutingforlocationsnearbythatcouldprimethemformountainclimbing.NotsurprisinglyatleastfortheFloridiansconditioningconsistedmostlyoflongdistancewalkingandfindingstairwellsinlocalparkinglots.UtilizingcustomizedpageswithintheMSFwebsiteeachteammemberhostedtheirowndedicatedpagewherefriendsfamilyandcolleaguescoulddonateontheirbehalf.FromApriltoJulydonationscameinatasteadypaceandthepagesbecamepersonalizedwithphotosandinspirationalcommentsfromenthusiasticsupporters.FinallyJuly12thcameandtheQuantumteamwasonthegroundandready.ThisphototakenatthebaseofScotlandsBenNevisthefirstmountaintobescaledincludestheentireQuantumteamfromlefttorightMichelMakeJustinShellLeahSosaQuantumPresidentJohnAllenDavinaStaufferfrontRussellVillamilbehindMichelleManeaTraceyEvansWayneCollingtonPeteGrenfellMichaelStamandRuudStam. 57MSFocusSummer2013HildyBergeristheMSFsFundDevelopmentCoordinator.IfyouareinterestedinplanningafundraisingeventorwouldlikemoreinformationcontacttheMSFFundDevelopmentDepartmentat800-225-6495orsendanemailtohildymsfocus.org.5thANNUALLEADERSHIPRECOGNITIONDINNERYogaMovesMS700p.m.SaturdayNovember162013TroyMarriottTroyMich.Costis75perticketTheeventwillraisefundstobenefittheTroyareaHealthandWellnessprogramsoftheMSF.LocalMSdoctorsandnursesinMichiganwillbehonoredalongwithDianeRingwhoco-foundedtheeventwithMindyEisenberg.Thiseventhasraisedover100000forMSFHealthandWellnessProgramsinitsfive-yearhistory.FASHIONSFIGHTAGAINSTMS2013FashionShowandLuncheonThursdayDecember192013TheRitz-CarltonFortLauderdaleBeach1130amCocktailsandAuction1230pmLunchandFashionShow_________FormoreinformationabouttheseeventscontactNathalieSloaneat954-776-6805ornsloanemsfocus.orgMediaInquiriesAdrienneMazzoneTransMediaGroupat561-750-9800Upcoming2013MSFEventsItwasabeautifulwarmdayweatherwouldnotadverselyimpacttheclimbersintheireffortstoreachthetopofeachpeak.Ifpicturestellastoryitwasundoubtedlyanawesomeexperience.FourteammembersVillamilRuudStamShellandSosaconqueredthe24-hourchallengebuteachclimberfeltagreatsenseofachievementbyscalingthethreepeaks.Intheendnotonlydidthesedeterminedathletesaccomplishanimpressivepersonalbestbyclimbingallthreemountainsinsuccessionbuttheirfundraisingeffortsresultedinover8500donatedtotheMSF.ItgoeswithoutsayingbutwellsayitanywayThanksguysourappreciationandadmirationforyoursuccessisboundless MSFocusFall201358QQIam34andwasdiagnosedwithRRMSinSeptember2012.Iamcurrentlyastay-at-homemom.MyhusbandisintheNavyandweareintheprocessofhouse-huntinginMississippi.Wehavetwochildrena12-year-olddaughteranda7-year-oldson.MyhusbandhassuggestedIgobacktoworkoncewemovebutIamconcernedthestressfromajobsettlingintoanewcommunityhavingkidsgoingtotwodifferentschoolselementarymiddleandbeingspreadtoothinmaytriggeraMSattack.Anyideason1whattypeofjobtolookforor2waystominimizestressduringthetransitionThankyouforanyassistanceyoumaybeabletoprovide.AAAsfarasyourjobsearchgoesitisimportanttopointoutthatMSusuallyhasnoimpactwhatsoeveronvocationalinterests.InotherwordstheworkthatyouwereinterestedindoingbeforeyouacquiredMSprobablystillinterestsyou.MScanchangeapersonsabilitytodocertainjobsbutpeoplewithMSusuallyprefertostayinthesameorasimilarfieldastheonetheywereinbeforediagnosis.IstronglyrecommendthatyoucontactthestateVocationalRehabilitationVRprograminyournewstate.TheVRprogramisagovernmentagencythatprovidestrainingplacementassistanceandotherservicestohelppeoplewithdisabilitiesobtaingainfulemployment.VRservicesarefreeofchargeandtheyareprioritizedinfavorofpeoplewhohavethemostsignificantdisabilities.ThelatterpointmeansthatyoumustgivetheVRcounselorthefullest-possibleaccountofhowMSaffectsyourday-to-dayfunctioningsothatheorshecandesignthebestarrayofservicestomeetallofyourneeds.Asformanagingstressamidwhatsoundlikeverystressfullifecircumstancesclearandopencommunicationbetweenyouandyourhusbandisthebestwaytoensurethatyouandhesupporteachotherduringthesetryingtimes.Maintaininggoodover-allhealththroughproperdietmoderateexerciseandrestfulsleepiscriticallyimportanttomanagingbothyourMSsymptomsandthestressassociatedwithabusylife.YoumayalsowanttojoinalocalMSsupportgroupsoyoucanshareyourexperiencesandperspectiveswithotherpeoplewhoaregoingthroughwhatyouaregoingthrough.OnapersonalnoteIthankyouforthesacrificesthatyouandyourfamilyaremakingindefenseofournationalinterests.QQWhenIwasstablewithMSIworkedinretail.IhadverylightdutyandhoursByPhillipRumrillPh.D.CRC MSFocusFall201359andreportedmymonthlyearningstoSocialSecuritySS.Ididntearnmuchanditgotmeout.NowImhomeforthepastfouryearsandbored.Idomakecraftyitemsandtheyareverysaleable.WhatwouldIhavetodotobecompliantwithSSandsellonlineIcouldsellalotorverylittle.Icouldsellalotonemonthandnothingothers.DoyouhaveadviceThesamewouldbetrueofsomeonesellinganotherkindofproduct.NoonewantstojeopardizebenefitsbutwewanttodosomethingAAThisisagreatideamakingsomeextramoneywhiledoingsomethingyoulovetodoRememberthatSSDIbeneficiariescanearnupto1040intaxableincomeyournetprofitpermonthwithouthavingtheirbenefitscompromisedinanyway.Evenifyoudogooverthatfigureonemonththereisatrialworkperiodofninemonthswhichdonotneedtobeconsecutiveduringwhichyoucanexceedthe1040substantialgainfulactivitylevel.Yourbenefitswouldonlybecutafteryouhaveexceededthatincomelevelfortheninthmonth.BesuretopayyourincomeandSocialSecuritytaxesonatleastaquarterlybasissotheSocialSecurityAdministrationcanmonitoryourearningsasyougo.ContacttheSocialSecurityAdministrationdirectlywithspecificquestionsaboutyourparticularcase.QQIleftmyjoblastyearatthistimeduemostlytocognitiveissuesandfatigue.IwasjusttoldthatIcouldapplyfordisabilityandshoulddososoonbecausethereisastatuteoflimitationsforwhenyouneedtoapply.IsthatcorrectAATheshortansweristhatyoumusthaveworkedforfiveyearstotalnotnecessarilyconsecutivelyduringthe10yearperiodprecedingyourapplicationforSocialSecurityDisabilityInsuranceSSDIsotechnicallyyouwouldhavefiveyearsfromthetimeyoulastworkedtofileyourapplicationifyouhadworkedcontinuouslyforthepreviousfiveyears.ThatsaidifyoufeelyoucannolongerworkandyoubelievethatthereasonforyourunemploymentisyourdisabilityIadviseyoutofileyourapplicationforSSDIimmediatelythereisnogoodreasontodelayyourclaim.ContactyourlocalofficeoftheSocialSecurityAdministrationforauthoritativeinformationregardingyourparticularcase.PhillipRumrillPh.D.CRCisaProfessorofRehabilitationCounselingandDirectoroftheCenterforDisabilityStudiesatKentStateUniversityinOhio.Hehasauthoredorco-authoredmorethan140professionaljournalarticles30bookchaptersmonographsmeasurementinstrumentsandtrainingmanualsandeightbooksentitledEmploymentIssuesandMultipleSclerosistwoeditionsMultipleSclerosisAGuideforRehabilitationandHealthCareProfessionalsResearchinRehabilitationCounselingtwoeditionsResearchinSpecialEducationOccupationalNeurologyandEmergingIssuesinRehabilitationCounseling. 60MSFocusFall2013ByMitchellSturgeonLetmebeclearaboutonethinghavingMSabsolutelysucks.Ithasimpactedmyqualityoflifeinasignificantlynegativemanner.Butitsafiftystepsbackwardandonestepforwardsituation.Thisarticleisaboutoneofthosestepsforward.HeresthedealitsnotthatmylifebeforeMSlackedpurpose.ItsmorelikemylifebeforeMShadtoomanypurposes.BackwhenIwasahealthypersonIhadsomanyinterestssomanyresponsibilitiessomuchgoingoninmylifethatIlackedfocus.FamilyhasalwaysbeenmynumberoneprioritybutmywifeKimandIwerebyourverynaturelaidbackparents.Wedidntbelieveinsmotheringourchildrenwithconstantattention.Thereforealthoughbeingagoodparentwasacorevalueofmineitdidntconsumeeverywakingmomentofmylifelikeitdoesforsomepeople.MycareerwasimportanttometoobutIwasnotaworkaholic.IwasconsideredsmartandproductiveandeasytogetalongwithunlessIcompletelymisreadthesituationfor23years.Manypeoplewantedmetobepartoftheirteamstaskforcesorprojects.YetIwasrarelytheexpertonanythingtechnicalfinancialhumanresourcesrelatedorotherwise.Iknewsomethingabouteverythingbutnoteverythingaboutanything.NeitherdidIpossessthedegreeoftenacitynecessarytobecomeCEOforexample.Mycareeralthoughrelativelysuccessfulwasunfocused.InmyhealthydaysItookpartinmanyrecreationalactivitiesbutIwasntascratchgolferadeeppowderskieroramarathonrunner.Iwasntwhollyengrossedinanyparticularpastime.IsupportedvariouscausesbutIwasneveronetospendvacationtimebuildinghousesinthirdworldcountries.IhadsomeinterestinlocalgovernmentandcivicactivitiesbutIneverranforofficeorwaschair-personofanycommunityorganization.Iwasapoliticalindependentnotidentifyingstronglywitheithermajorparty.Ilongagostoppedattendingchurch.Iwasntfocusedonanythinginparticularduringmyfreetime.BeforeMSIhadmanyinterestsbutfewpassions.LifewasgoodandIknewthatlifewasgoodbutIhadsomanyballsintheairthatIneverfeltfocused.Idonow.Iremainanopen-mindedandthought-fulindividualsometimestoafaultthoughtfulinthesensethatmyheadisfullofthoughtsnotinthesensethatIalwaysconsiderotherpeopleswell-beingfirst.ButtodayIspendlesstimespreadingmyselfthinandIspendsomuchmoretimebeingMitchtheguywithMS.LivingacontenteduncomplicatedlifeasadisabledpersononedayataFocusedonLiving MSFocusFall201361timehasgivenmetheidentityandfocusthatIwasmissing.ItfeelsnicetofinallyknowwhatImsupposedtobedoingwithmylifeotherthanbeingagoodhusbandfatherfriendcoworkerandgolfpartner.SomepeopleresistbeingidentifiedbytheirdiseasebutIembraceit.SureIammorethanmyMSbutMSissuchanimportantpartofwhoIam.ImgoingtomakethemostofmysituationbyadvocatingforthedisabledcommunityingeneralandpeoplewithMSinparticular.MShasstolensomuchfrommebutitdidprovidethisnewsenseoffocus.ThatdoesntmakeupforallthecrapIvebeenthroughbutwellatleastitssomething.1.SutliffMatthewH.PTJonathanM.NaftCPODarleneK.StoughRNJarChiLeeMSSusanaS.ArrigainMAandFrancoisA.TheHipFlexionAssistDeviceHFADHFADimprovedstrengthHFADincreaseddailyactivitylevel.HFADbothGaitTraining.TheHFADIntroducingaPracticalSolutionforHipFlexionWeaknessPleasevisitourwebsiteformoreinformation.ebsPleasevstourwormatonormoreinffBeforehisdiagnosisMitchellhadachemicalengineeringdegreeanMBAandapromisingcareer.Heenjoyedhisamazingwifeandtwowonderfulchildrenstilldoes.Hewaslivingthedream.Mitchellroutinelyengagedinavarietyofphysicalactivitiessuchasgolfcampinghuntingdrivingtypinganddressinghimself.Thenonedayashewasjoggingonhistreadmillhenoticedthathisleftfootwentslapslaponthetreadmillwhereashisrightfootsmoothlytransitionedfromheeltotoeheeltotoe.Afterayearofvisitstoanassortmentofspecialistshewasdiagnosedwithprimaryprogressivemultiplesclerosis.Twelveyearslaterhesitsinapowerwheelchair.Hecantworkanymoreandhiswifenowdoublesashiscaregiver.Heutilizesvoicerecognitionsoftwaretowritehisblogatwww.enjoyingtheride.com.Throughhiswritinghehelpspassthetimewhileengagedinaproductiveactivityadvocatingforthedisabledcommunityofwhichheisnowareluctantmember.DespiteeverythingMitchellisstillEnjoyingtheRide. 62MSFocusFall2013RequesttoStudySativexforMSSpasticityinU.S.GWPharmahassubmittedaPhaseIIIinvestigationalnewdrugINDapplicationwiththeU.S.FoodandDrugAdministrationFDAtoconductapivotalSativexefficacyandsafetyclinicalprogramtotreatspasticityduetoMS.SativexwhichhasalreadybeenundergoingPhaseIIIprogramintheUSasatreatmentforcancerpainiscurrentlyapprovedin22countriesoutsidetheU.S.asatreatmentforMSspasticity.GWslicensingpartnerforSativexOtsukaPharmawillcarryouttheplannedPhaseIIIprogramandwillprovidetherequiredfundingforthestudy.ThefirmhassoughttheFDAresponseontheimportantfeaturesoftheproposedsinglePhaseIIItrialprotocolaspartofitsMSspasticityINDapplicationwhichwillbeintegratedtofinalizetheprotocoldesign.ItisanticipatedthatthePhaseIIItrialwillbeginin2014.CurrentlybothpharmacompaniesareundertakingaPhaseIIIclinicaltrialstudyforSativexincancerpainandresultsfromtwopivotalPhaseIIItrialsareexpectednextyear.ComposedmainlyoftwocannabinoidsincludingCBDcannabidiolandTHCdelta9tetrahydrocannabinolSativexisadministeredasametereddoseoro-mucosalspray.Dr.ThrowerSeecommentbelowthefollowingbrief.CannabisShowsNoEvidenceofSlowingMSDiseaseProgressionThefirstlargenon-commercialclinicalstudytoinvestigatewhetherthemainactiveconstituentofcannabistetrahydro-cannabinolorTHCiseffectiveinslowingthecourseofprogressiveMSshowsthatthereisnoevidencetosuggestthisalthoughbenefitswerenotedforthoseatthelowerendofthedisabilityscale.TheCUPIDCannabinoidUseinProgressiveInflammatorybrainDiseasestudywascarriedoutbyresearchersfromPlymouthUniversityPeninsulaSchoolsofMedicineandDentistry.CUPIDenrollednearly500peoplewithMSfrom27centersaroundtheUKandhastakeneightyearstocomplete.PeoplewithprogressiveMSwererandomizedtoreceiveeitherTHCcapsulesTheMSNewscolumnincludesanalysisfromMSFSeniorMedicalAdvisorBenThrowerM.D.DrawingfromthetopMSnewsstoriesofthequarterDr.ThrowerwillassesswhatthenewsmeanstoyouthepersonwithMS.MSNEWSandWhatitMeanstoYou MSFocusFall201363oridenticalplacebocapsulesforthreeyearsandwerecarefullyfollowedtoseehowtheirMSchangedoverthisperiod.ThetwomainoutcomesofthetrialwereadisabilityscaleadministeredbyneurologiststheExpandedDisabilityStatusScaleandapatientreportscaleoftheimpactofMSonpeoplewiththeconditiontheMultipleSclerosisImpactScale29.OverallthestudyfoundnoevidencetosupportaneffectofTHConMSprogressionineitherofthemainoutcomes.Howevertherewassomeevidencetosuggestabeneficialeffectinparticipantswhowereatthelowerendofthedisabilityscaleatthetimeofenrollmentbutasthebenefitwasonlyfoundinasmallgroupofpeopleratherthanthewholepopulationfurtherstudieswillbeneededtoassesstherobustnessofthisfinding.OneoftheotherfindingsofthetrialwasthatMSinthestudypopulationasawholeprogressedslowlymoreslowlythanexpected.Thismakesitmorechallengingtofindatreatmenteffectwhentheaimofthetreatmentistoslowprogression.ProfessorJohnZajicekProfessorofClinicalNeuroscienceatPlymouthUniversityPeninsulaSchoolsofMedicineandDentistrysaidToputthisstudyintocontextcurrenttreatmentsforMSarelimitedeitherbeingtargetedattheimmunesystemintheearlystagesofthediseaseoraimedateasingspecificsymptomssuchasmusclespasmsfatigueorbladderproblems.AtpresentthereisnotreatmentavailabletoslowMSwhenitbecomesprogressive.ProgressionofMSisthoughttobeduetodeathofnervecellsandresearchersaroundtheworldaredesperatelysearchingfortreatmentsthatmaybeneuroprotective.Laboratoryexperimentshavesuggestedthatcertaincannabisderivativesmaybeneuroprotective.ThestudyispublishedinTheLancetNeurology.Dr.ThrowerTheuseofmarijuanainMSremainssomewhatcontroversial.Theactivechemicalcompoundsinmarijuanaarecalledcannibinoids.OneofthemajorcannibinoidsistetrahydrocannibinolTHC.Cannibinoidscanbeusedthroughinhalationortakenorally.MarinolisanFDA-approvedoralformofsyntheticTHC.ItisapprovedfornauseafromchemotherapyandasanappetitestimulantforpeoplewithAIDS.InCanadaandGreatBritainSativexisavailable.Sativexisanoilformofcannibinoidstakenasasublingualspray.InthosecountriesitisapprovedforthemanagementofpainorspasticityduetoMS.StudieswillbebeginninghereintheU.S.inhopesthatthedrugwillgetFDA-approvalforuseinpeoplewithMSsufferingfromspasticity.WhileseveralstudieshaveshownthatcannibiodsmaydecreasepainandspasticityinMStheeffectofcannibinoidsonthecourseofMSislessclear.ThismostrecenttrialaskswhetheroralTHCmightactu-allyslowtheprogressionofdisabilityinprogressiveMS.TheresearchersfoundnobenefitfromoralTHCbutnotedthatboththeactivetreatmentgroupandplacebogrouphadverylittleprogressionoftheirMSduringthestudy.AnotherStudyFindsnoEvidenceofCCSVIAssociationwithMSThereisnoevidencethatimpairedbloodfloworblockageintheveinsofthe neckorheadisinvolvedinMSaccordingtoaMcMasterUniversitystudy.TheresearchpublishedonlinebyPLOSONEfoundnoevidenceofabnormalitiesintheinternaljugularorvertebralveinsorinthedeepcerebralveinsof100patientswithMScomparedwith100peoplewhohadnohistoryofanyneurologicalcondition.ThestudycontradictsacontroversialtheorythatsaysthatMSachronicneurodegenerativeandinflammatorydiseaseofthecentralnervoussystemisassociatedwithabnormalitiesinthedrainageofvenousbloodfromthebrain.In2008ItalianresearcherPaoloZambonisaidthatangioplastyablockageclearingprocedurewouldhelpwithaconditionhecalledchroniccerebrospinalvenousinsufficiencyCCSVI.ThiscausedafloodofpublicresponseinCanadaandelse-wherewithmanyconcernedindividualslobbyingforsupportoftheLiberationTreatmenttocleartheveinsasadvocatedbyZamboni.ThisisthefirstCanadianstudytoprovidecompellingevidenceagainsttheinvolvementofCCSVIinMSsaidprincipalinvestigatorIanRodgeraprofessoremeritusofmedicineintheMichaelG.DeGrooteSchoolofMedicine.OurfindingsbringamuchneededperspectivetothedebatesurroundingvenousangioplastyforMSpatients.InthestudyallparticipantsreceivedanultrasoundofdeepcerebralveinsandneckveinsaswellasamagneticresonanceimagingMRIoftheneckveinsandbrain.Eachparticipanthadbothexaminationsperformedonthesameday.TheMcMasterresearchteamincludedaradiologistandtwoultrasoundtechnicianswhohadtrainedintheZambonitechniqueattheDepartmentofVascularSurgeryoftheUniversityofFerrara.Dr.ThrowerAfterquiteabitofinitialexcitementsurroundingCCSVIanditspossibleassociationwithMSmostrecenttrialshavebeendisappointing.LikethisstudyrecentinvestigationshavefailedtoshowthatabnormalitiesofvenousoutflowareassociatedwithMS.SimilarlystudieshavefailedtoshowthatangioplastyforpresumedCCSVIhasanysignificanteffectonthecourseofMS.FDAApprovesNeuralStemCellClinicalTrialTheU.S.FoodandDrugAdministrationFDAhasapprovedautologousmesenchymalstemcell-derivedneuralprogenitorcellsMSC-NPsasanInvestigationalNewDrugINDforaPhaseIclinicaltrialinthetreatmentofmultiplesclerosisattheTischMSResearchCenterofNewYorkthecenterhasannounced.Thegroundbreakingstudywillinvestigatearegenerativestrategyusingstemcellsharvestedfromthepatientsownbonemarrow.Thesestemcellswillbeinjectedintrathecallyintothecerebrospinalfluidsurroundingthespinalcord.Preclinicaltestingfoundthattheinjectionofthesecellsmaydecreasebraininflammationandpromotemyelinrepairandorneuroprotection.Approximately20progressiveMSpatientsrecruitedfromtheexistingpatientpopulationoftheInternationalMultipleSclerosisManagementPracticeIMSMPwillbeinitiallyenrolledinthisopenlabelsafetyandtolerabilitystudy.MSFocusFall201364 65MSFocusFall2013StayCurrentLikeacondensedversionofalltheinformationyougetintheMSFocusfourtimesayeartheMSFYiisafreemonthlyinternetnewsletterdeliveredtoyourinboxfromtheMSF.PackedwithinformationaboutnewresearchupcomingclinicaltrialshealthtipsandnewsfromtheMSFthenewsletterisanotherwaytostayeducatedandempowered.Signupforyourfreesubscriptionatwww.msfocus.org.TomyknowledgethisisthefirstFDA-approvedstemcelltrialintheUnitedStatestoinvestigatedirectinjectionofstemcellsintothecerebrospinalfluidofMSpatientsandrepresentsanexcitingadvanceinMSresearchandtreatmentsaidDr.SaudA.SadiqSeniorResearchScientistatTischMSResearchCenterofNewYorkandthestudysprincipalinvestigator.ParticipantswillundergoasinglebonemarrowcollectionprocedurefromwhichMSC-NPswillbeisolatedexpandedandtestedpriortoinjection.Participantswillreceivethreeroundsofinjectionsatthreemonthintervals.Safetyandefficacyparameterswillbeevaluatedinallparticipantsthroughregularfollowupvisits.Inthisandsubsequentstudiesresearchershopetodefinetheoptimaltherapeuticdoseanddosingfrequencyofstemcellsthebestrouteorcombinedroutesofadministrationwhetherornotstemcellsshouldbeusedincombinationwithotherdiseasemodifyingtreatmentsandwhichpatientsaremostlikelytobenefitfromthistreatment.EnrollmentintheclinicaltrialwillbeginafterapprovaloftheprotocolhasbeenobtainedfromanInstitutionalReviewBoardIRBandfundinghasbeensecured.Adefinitivedateforenrollmenttobeginwillbeannouncedatthattimepriortowhichnostudyactivitieswillbeconducted.Questionsaboutthestudyprotocolenrollmentcriteriaandothernon-clinicalmattersshouldbedirectedtotheStudyCoordinatorsDanielKofflerdkofflertischms.orgor646-557-3852andSydneyChirlsschirlstischms.orgor646-557-3860.Clinicalquestionswillbeforwardedtooneoftheresearchnurses.Formoreinformationonthisstudyvisitwww.tischms.orgDr.ThrowerCurrentlythemanage-mentofMSfocusesonthreeareastreatingrelapsesmanagingsymptomsandalteringthelong-termcourse.Hopefullywewillsoonaddafourthtreatmentarmrepairingandreversingthedamage.Greateffortsareunderwaytowardsmakingthisareality.Oneareaofresearchfocusesonstemcellsasasourceofrepair.TheannouncementofthisfirstFDA-approvedclinicaltrialofstemcellsforneuralrepairinMSisexciting.WeneedtokeepinmindhoweverthatthisisaPhaseItrial.Earlyhumantrialssuchasthiswillanswerverybasicquestionssuchasthesafetyofatreatmentandwhatthebestdoseofagiventherapyis.AssumingtherearenomajorsafetyconcernslatertrialswillfurtherdefinewhetherthistypeoftherapyisbeneficialinMS. 66MSFocusFall2013Q.Q.WhoisatriskforMSA.A.MSisconsideredanautoimmunedisorderinthesamefamilyaslupusrheumatoidarthritisCrohnsdiseasejuvenilediabetesmellitusandulcerativecolitis.Withtheexceptionofdiabetesmellitusandulcerativecolitisautoimmunediseasesaremuchmorecommoninwomenthanmen.InthepastwomendiagnosedwithMSoutnumberedmenby2.5to1.Morerecentsurveyshaveshownaratioof4to1.ThereasonMSisbecomingmorefrequentinwomenisunclearyetwedoknowthatsexhormonesestrogenprogesteroneandtestosteroneplayaroleinMS.TheexceptiontothisgenderdiscrepancyinMSisprimaryprogressiveMSwhichismorecommoninmen.MShastraditionallybeenthoughtofasaconditionthataffectsCaucasiansmorethanotherraces.WhilethisstillholdstrueweareseeingmanymoreAfricanAmericansHispanicsandotherracesdiagnosed.ResearchersinSouthandCentralAmericaarefindingincreasingratesofMSinthoseregions.WhileMSremainsveryuncommoninAfricaweseeasignificantnumberofAfricanAmericanswithMShereintheUS.ItisestimatedthatAfricanAmericansdevelopMSathalftherateofCaucasianAmericansonein1500peopleratherthanonein750.StudieshavealsoshownthatMSmayfollowamoreaggressivecourseinAfricanAmericans.FinallywhileMSistypicallydiagnosedinyoungadultsages20to40wearecomingtoabetterunderstandingofthewidevariationinageatthetimeofdiagnosis.TeenagersandchildrenrepresentasignificantminorityoftheMScommunityestimatesofthosediagnosedwithMSbefore18rangefrom5to9percent.Q.Q.WhyshouldIexerciseifIhaveMSA.A.ManyMSsymptomssuchasfatigueandweaknessaresimilartothesymptomsexperiencedbypeoplewithoutMSfollowinglongperiodsofinactivity.ThishasledmanyresearcherstotheorizethatsomeproblemsassociatedwithMSmayactuallybearesultoforexacerbatedbydecreasedphysicalactivityusuallyduetoMSsymptoms.Thereforeitseemslogicaltoassumethatincreasedactivitycouldleadtoimprovementofsomesymptoms.StudiesinvestigatingthistheorycitedasignificantreductioninmanyMSsymptomsThisQuestionsandAnswerscolumnfeaturesquestionsthathavebeenansweredbytheMSFforSharecareacompanydedicatedtoprovidingthebesthealthandwellnessinformationonline.TheMSFhaspartneredwithSharecaretohelpspreadvitalinformationaboutthediseasetotheglobalMScommunity.VisittheMSFspageonSharecare.comathttpwww.sharecare.comgroupmultiple-sclerosis-foundation. Fall2013MSFocus67aswellaspositivemoodchangesandincreasedsocialinteraction.AlthoughexercisedoesnotaffectthediseaseprocessregularexercisecanimprovehealthanddecreasetheriskforcardiovasculardiseaseexplainsKenSeamanDirectoroftheUniversityofDelawaresUDMSClinic.Appropriatelyprescribedexercisecanimprovestrengthflexibilitybladderfunctionenduranceandsenseofwell-being.ExercisealsoelevatesyourgoodcholesterolHDLandprotectsagainstosteoporosis.Exercisecanimproveself-esteemandleadtoasenseofaccomplishmentandgratification.Thiscanbeespeciallyimportantforthosefeelingalossofcontrolovertheirlives.Large-muscleactivityhelpstoeliminatepent-upfrustrationhostilityandangerthroughthereleaseofendorphinsthebodysnaturalmood-elevatingpainrelievingcompounds.Exercisealsoreduceslevelsofcortisolthestressdepressionhormoneintheblood.Q.Q.WhydosomepeoplewithMShavespeechproblemsA.A.Humanspeechendswiththemouthbutstartswiththebrain.Thelungsvocalcordsandtongueallplayaroleaswellasthelipsthroatandjaw.ThatleavesseveralplacesalongthewaythatspeakingcangetcomplicatedwhenmultiplesclerosisMSisinvolved.WhenthereisdamagetothenervesthatstimulatethemusclestheymaynotworkasquicklyorpreciselyaccordingtoBonnieSchaudeoutpatientspeechpathologistattheMSInstituteattheShepherdCenterinAtlantaGa.SpeechsymptomswithMSarentaboutnotknowingtherightwordeventhoughsomepeoplealsocouldhavespeakingdifficultieslinkedtocognitiveissues.SometimesproblemstalkingmightbeasideeffectfrommedicationsparticularlythosethatcauseadrymouthbutmoreoftenjustaswhenMShindersmobilitythemusclesyouusetospeaksimplyarentgettingthemessage.Inadditionthosesamesymptomsthatplayhavocwithotherpartsofthebodycanshowupinspeech.Ataxiamuscleweaknessandtremorallcancomeintoplay.Q.Q.WhatcausesboweldysfunctioninpeoplewithMSA.A.Acommonsymptomthataffectsapproximately68percentofpeoplewithmultiplesclerosisMSisboweldysfunction.PeoplecanexperienceboweldysfunctionwhendemyelinationinthecentralnervoussystemCNSinterfereswithnervetransmissionneededfornormalbowelfunction.Otherfactorslikeslowedtransittimeoftheintestinesmuscleweaknessfatigueandlackofexercisecanalsocontributetotheproblem.Medicationsthatareusedtomanagesymptomsofurinaryproblemsordepressionmightalsoalterbowelfunctions.Theseincludesedativesandtranquilizersdiureticsnarcoticsandanalgesicsantidepressantsanticholinergicsantacidsironsupplementsandantihypertensives.InadditionmanypeoplewithMStrytodecreasetheirbladderincontinencebyinappropriatelylimitingtheirfluidintakewhichinturnincreasestheirriskforconstipation.Questionscanbealsobeemailedtosupportmsfocus.orgormailedtoMSFocus6520NorthAndrewsAvenueFortLauderdaleFL33309. NONPROFITORG.U.S.POSTAGEPAIDFT.LAUDERDALEFLPERMITNO.2698AreyoumovingPleasenotifyusofyourchangeofaddress.Call888-MSFOCUS673-6287orE-Mailsupportmsfocus.orgChangeServiceRequested6520NorthAndrewsAvenueFortLauderdaleFlorida33309-2132RAND-SCOTIncorporatedMakeanEasytransferwiththeEasyPivotTheEasyPivotPatientLiftisthepatientliftofchoice-EasyPivotEasyPivot401LindenCenterDriveFortCollinsCO80524800-467-7967970-484-7967inforandscot.com2012Rand-ScotInc.ManufacturersofEasyPivotLiftsBye-ByeDecubitiCushionsSaratogaFitnessProductsSpiritCycleFeelbetterforlifewithSpiritCyclewww.RandScot.comSaratogaSpirit690-