Page 1
Page 2
Page 3
Page 4
Page 5
Page 6
Page 7
Page 8
Page 9
Page 10
Page 11
Page 12
Page 13
Page 14
Page 15
Page 16
Page 17
Page 18
Page 19
Page 20
Page 21
Page 22
Page 23
Page 24
Page 25
Page 26
Page 27
Page 28
Page 29
Page 30
Page 31
Page 32
Page 33
Page 34
Page 35
Page 36
Page 37
Page 38
Page 39
Page 40
Page 41
Page 42
Page 43
Page 44
Page 45
Page 46
Page 47
Page 48
Page 49
Page 50
Page 51
Page 52
Page 53
Page 54
Page 55
Page 56
Page 57
Page 58
Page 59
Page 60
Page 61
Page 62
Page 63
Page 64
Page 65
Page 66
Page 67
Page 68
CaregiversNightOutWinners PublicationsManagerTerrySchenkerEditorialCoordinatorChristopherPaineEditorialCommitteeKaseyMinnisNatalieBlakeAlissaAydenHildyBergerBrieaCuringtonJayHassContributingWritersRichardW.BoughtonStephanieButlerNPMSCNJoanneFortunatoJeffreyN.GingoldEllenWhippleGuthriePharmDKimberlyM.SandersNDLouiseCurtisSeidlBenThrowerMDTALKBACKTALKBACKWeWelcomeTopicSuggestionsforFutureIssues.Yourcommentsabouteachissueareimportanttous.Emailcommentstoeditormsfocus.orgorwritetoEditorMSFocus6520N.AndrewsAvenueFortLauderdaleFL33309TakeMSFocusontheroadwithMSFocusRadio.orgListenonyourPCormobiledeviceAvailable247 MSFocusispublishedquarterlyinenlargedtypeforthebenefitofourreaders.Audioversionsoffeaturedarticlesareavailableforlisteningordownloadonwww.msfocus.orgclickOnDemandAudio.Backissuesareavailableonlineatwww.msfocus.org.MSFocusisafreepublicationforindividualswithMStheirfamiliesandothersinterestedinMS.StatementofPurposeThepurposeoftheMultipleSclerosisFoundationspublicationsistoempowerthoseaffectedbyMSwiththeinformationnecessarytomakethemostcompleteandeducateddecisionsconcerningtheirhealthcare.Wedonotadvocateorendorseanyspecifictreatmentshealingmodalitiesorpractitioners.Thematerialpresentedinthispublicationisforinformationalpurposesonly.Forspecificadviceconsultahealthcareprofessional.MSFdoesbelievethateachpersonhastherighttochoosethetreatmentstheyfeelarebestandthereforeactsasasourceofinformationprovidingreferralstolocalresourcesandpartnershipinproblemsolving.MSFOnTheRoad54RegionalEvents55FromtheLibrary58UncleSamsHelpingHand60MenMS62MSNews64QuestionsAnswers66FEATURESReviewofCAMTherapiesOffersMixedResults10TheDietDebateMcDougallDietandWahlsProtocol19MissingFacesFacialRecognitionLossSomethingtoTalkAbout26ReducingInflammationinMultipleSclerosisNaturally30InMemoriumDr.WilliamMundy36NMSEAM2015Initative37CaregiversReceivePraiseThanksandaSpecialNightOut38KeepCoolandStayFit42CONTINUINGTOPICSAsWeSeeIt8MSFMailbox9FacebookFeedback35SupportGroupSpotlight44PSWhatsNew47UpdatesbythePharmacist48VoicesHaitianHardships50MSTech10152 8MSFocusFall2014DisneyhaditrightandweagreethesayingholdstruewhenitcomestotheMScause.InSeptemberwewerepleasedtoattendoneofthepremierworldwideconferencesformultiplesclerosis.HeldinBostonitwasthejointmeetingofACTRIMSAmericasCommitteeforTreatmentandResearchinMSandECTRIMSEuropeanCommitteeforTreatmentandResearchinMS.ThesejointmeetingsareonlyscheduledintheU.S.onceeveryseveralyearsanditwasanopportunitynottobemissed.Thiseventbringstogetherthebrightestmindsincludinghealthcarepractitionersresearcherspatientadvocacygroupsandothers.TheyareallunitedbyasinglefocustobroadentheirknowledgeinordertofightandeliminateMS.Additionallyindustryrepresentativeswereonhandtosharetheirlatestandgreatestaswellasupdatesontherapiesjustoverthehorizon.ThesewerejustafewofthekeyhighlightsAtaroundtablediscussionandothermeetingsconsistingofmostlyadvocacygroupsfromvariouscountriesitwasquiteapparentthatthemajorityofissuesandconcernsfacedbyfamiliesaffectedbyMSwerenotuniquetoanyonelocale.Themissionofourcounterpartswasnotdissimilarandmuchcouldbegainedinthefuturebyagreaterexchangeofideas.Thecasewasmadethatgeographyneednotbeabarrierforincreasingcommunicationandworkingtogether.NewsofMSFsrecentrolloutofMSFocusRadiowww.msfocusradio.orgwasverywellreceived.Becauseofthe24-houravailabilityontheInternetitsprogrammingisreadilyaccessibleonaglobalscale.Thestationsfullpotentialasauniversaloutreachtoolisinchingclosertowardsbeingattained.Wearediligentlyworkingonmakingthatareality.AconsensuspapertitledTheUseOfDisease-ModifyingTherapiesinMSdraftedbytheMultipleSclerosisCoalitionofwhichtheMSFisamemberorganizationwasmadeavailabletotheattendees.ThisdocumentsummarizedcurrentevidenceaboutthevariousFDA-approveddisease-modifyingtherapiesandprovidedsupportfortheirbroadaccesstopeoplewithMSintheUnitedStates.AdvocacycontinuestobeagrowingunifyingforceasourfellownationalnonprofitorganizationsincludingtheMSCoalitiongrassrootsgroupsandindustryarefocusedandcollaboratingonvariousissuesaffectingtheMScommunity.Thiswasaveryinformativeandproductiveeventandwelookforwardtoattendingothersinthefuture.Ourongoingparticipationenhancesourabilitytoserveourconstituency.JulesKuperbergAlanR.SegaloffCo-ExecutiveDirectorCo-ExecutiveDirectorItsaSmallWorldAfterAllItsaSmallWorldAfterAll IamwritingformysonNickLoMonteJr.whohasPPMS.StartinginDecember2013andlastingthroughMarch2014Nickhadaspiratepneumonia.DuringaFebruaryincidentIhadtodoCPRonNickuntiltheambulancegothere.AfterreadingyourarticleonDysphagia101byMarissaBarreraIcontactedMs.Barrera.ShedirectedmetoMs.TeresaBiberthewomanbehindtheGuardianTherapy.SincethetreatmentsNickhashadnoincidents.ThisGuardianTherapyreallyreallyworks.ThankyouforputtingthisarticleinMSFocus.Ithassavedmysonandmylife.Thankyou.NickLoMonteSr.BocaRatonFla.WhatasmorgasbordofblessingsyourpublicationprovidesLife-changinginformationcompassiongaloreupliftingstoriesandencouragingmessagesaboundintheMSFocus.LovewhoevercoinedthephraseMultipleStrengths.Keepdeliveringthisdynamicpublicationwhichservesotherssopowerfully.KathleenKareyvaVeniceFla.EditorsNoteMultipleStrengthsisthebrainchildofthedynamicNickMarchesaniMSFAmbassadorMultipleStrengthsSupportGroupleaderandcertifiedZumbainstructor.MeetNickandbenefitfromhishigh-energyclassesforpeopleofallabilitiesonour2015MSFCruiseforaCause.Seepage25formoreinformation.Iamverypleasedtoreadyourmagazine.IprefertofocusonwhatispossibleformeandhowIcanaccomplishit.Ilooktowardsolutionstomakemyday-to-daylifeasclosetomyoldnormalaspossible.IwasdiagnosedwithMSin2009.Thediseasestartedbyattackingmycognitivethinkingandnowmybalancewhichstopsmefromgolfingandskiing.IknowthatthiswillnotgetbetterbutImnotgivingupcompletely.Istartedlookingintoquadpower-assistbikestokeepmeactiveout-doors.ThankyouforthispublicationPhilHaugBarabooWis.Iamwritingtothankyoufromthebottomofmyheartfortheairconditionerthatyoupurchasedforme.IdontknowifyouveeverspentJulyinMississippibutImheretotellyouthatyoujustaboutneedoxygentogooutsidebecausethehumidityissohorribleTheresnodoubtinmymindthatmyMSwouldhavegottenmedownhaditnotbeenforyourcontribution.IwishthatIcouldpersonallythankeveryonewhomadeacontributionmonetarilyaswellasphysically.GodblessyouallAnnetteSpinnerMendenhallMiss.Iwanttothankyouformyin-homesupportservices.TheproviderMarieFosterwaspleasantprofessionalandpossessedastrongworkethic.Sheenabledmetohaveaclearmindwithreducedstress.Thankyouagain.EllaF.BrownPicoRiveraCalif.MSFocusFall20149IfyouhaveanycommentsorquestionsfortheMSFtheycanbeemailedtoeditormsfocus.orgorwrittentoEditorMSFocus6520N.AndrewsAve.Ft.LauderdaleFL33309 MSFocusFall201410DespitetheavailabilityofseveralFDA-approveddisease-modifyingtherapiesformultiplesclerosisthereappearstobeasignificantgapinthecareofpeoplewithMSinregardstotheirMSsymptoms.SomeofthedisablingMSsymptomsincludefatiguepainstiffnessabnormalsensoryfeelingsmusclespasmsmoodandmemoryproblemstremorimbalancebladderdysfunctionandconstipation.Havingoneormoreofthesesymptomscanleadtopoorqualityoflife.ManypeoplewithMSexplorecomple-mentaryandalternativemedicalCAMtreatmentoptionsforthesesymptoms.CAMtherapiesaredefinedasnon-conventionalformsofmedicaltherapiesthatarenotprescribedbyaconventionalmedicalprovider.ExamplesofCAMtherapiesincludeuseofover-the-counternutritionaldietarysupplementssuchasomega-3fattyacidsgingkobilobaginsengvitaminsandantioxidantsdietsherbssuchascannabismind-bodytechniquessuchasmindfulness-basedstressreductionyogaandtaichiandmedicalpracticessuchasnaturopathyandhomeopathyamongothers.ThelimitationsassociatedwithCAMformostchronicmedicalconditionsincludethelackofnecessarymedicalsupervisionneededforitsuseandthelackofobjectiveinformationaboutthescientificevidencebehindefficacyofthesetherapies.ReviewingtheDataToaddressthisgapin2007theAmericanAcademyofNeurologyAANthelargestprofessionalsocietyintheworldforneurologistsandneuroscientistsconvenedapanelofexpertstoreviewtheliteratureaboutCAMtherapiesinMSsothatevidence-basedinformationaboutuseofCAMinMScanbeprovidedtopatientshealthcareprovidersandotherMSstakeholders.InMarch2014thecomprehensivereviewemergingfromthisliteraturesearchwaspublishedastheAANguidelines.TheAANguidelinesincludedreviewofrelevantMSandCAMtherapyarticlespublishedbetween1970andSeptember2013.115studiesthatmetthestringentcriteriadevelopedbytheAANGuidelineDevelopmentSubcommitteeunderwentdataextractionandinclusionintheguidelines.Table1rightshowsthekeyCAMtherapiesthatwereincludedintheliteraturesearch.EachstudythatmettheinclusioncriteriaforthereviewwasclassifiedintoClassIIIIIIorIVaccordingtoawell-definedAANguidelinedevelopmenttherapeuticclassificationsystem.ClassIstudiesareconsideredmostscientificallysoundandclassIVtheleast.TheresultantdatathenformsthebasisofstrengthofrecommendationforpracticeforindividualByVijayshreeYadavMBBSMCRandPushpaNarayanswamiMD CAMtherapy.TherecanbefourlevelsofrecommendationsLevelABCandUforanygivenconditionforanindividualtherapybasedontheclassofstudiesavailableTable2below.HitsandMissesDetailsofthekeyCAMtherapiesandtheirlevelofevidenceforeffectivenessorineffectivenessforvariousMSsymptomsaredescribedinTable3page13.LevelArecommendationswereavailableonlyformedicalmarijuanainpillformoralcannabisextractandginkgobiloba.Theguidelinesreviewed19studiesonvariousformsofcannabisincludinginapilloralsprayspraytakenbymouthorsmokedform.ThisreviewfoundthatmedicalmarijuanapillsandoralmedicalmarijuanaspraymayeasepatientsreportedsymptomsofspasticityandpainrelatedtospasticityinMS.MedicalmarijuanaoralspraymayalsohelptreatfrequenturinationinMS.WithcurrentdatathereisnotenoughevidencetoshowwhethersmokingmedicalmarijuanaishelpfulintreatingMSsymptoms.Thereviewalsofoundthatginkgobilobadoesnothelptreatmemoryandthinkingproblemshoweveritmighthelptreatfatigue.Otherkeyfindingsfromtheguide-lineswerethatmagnetictherapycanhelplessenfatiguebutnotdepressionandreflexologymighthelplessenparesthesiatinglingnumbnessandTABLE1CAMtherapiesincludedinthereviewCategoryExamplesMindbodyBiofeedbackmedicineMusictherapyMindfulnesstrainingHypnosisBiologically-HerbsbasedPadma28practicesGinkgobilobaCannabisDietarysupplementationLow-fatdietwithomega-3supplementationLinoleicacidSupplementationCreatineAcetyl-l-carnitineInosineLofepramineplusphenylalaninewithvitaminB12CariLoderregimeThreonineGlucosaminesulfateLDNOtherbiologically-basedpracticesBeevenomtreatmentTransdermalhistamineHyperbaricoxygenManipulativeReflexologyandYogabody-basedHippotherapypracticesMassagetherapyAcupunctureElectroacupunctureProgressivemusclerelaxationEnergyMagnetictherapymedicineNeuraltherapyOthermedicineNaturopathicmedicineTABLE2LevelsofrecommendationperAANguidelinedevelopmenttherapeuticclassificationsystemLevelofImplicationonrecommendationRecommendationonindividualtherapyAEstablishesthetherapyaseffectiveineffectiveharmfuloruseful.BEstablishesthetherapyasprobablyeffectiveineffectiveharmfuloruseful.CEstablishesthetherapyaspossiblyeffectiveineffectiveharmfuloruseful.UDataasavailableisinadequateorconflictingthusthetherapyisunproven. MSFocusFall201412otherunusualskinsensations.TheCariLoderregimenregimenconsistingofanantidepressantLofepraminecombinedwithL-phenylalanineandintramuscularvitaminB12alow-fatdietwithfishoilandbeestingtherapydidnothelpMSsymptoms.CAMtherapiesthatwerereviewedintheguidelinebutwereinconclusiveabouttheirefficacyornon-efficacyincludedBiofeedbackmusictherapymindfulnesstraininghypnosispadma28linoleicacidcreatinemonohydrateacetyl-l-carnitineinosinethreonineglucosaminesulfatelow-dosenaltrexonetransdermalhistaminewithcaffeinehyperbaricoxygenyogahippotherapymassagetherapyacupunctureelectroacupunctureprogressivemusclerelaxationneuraltherapyandnaturopathicmedicine.RemainingUnknownsInsummaryitappearsthatformostoftheCAMtherapiesthereislittleevidencefortheireffectivenessfortreatingMS.ForsomeCAMtherapiesnostudieswereavailable.ForotherCAMtherapiesstudiesshowedevidenceforeffectivenessorlackofeffectiveness.FormostCAMtherapiessafetyisunknown.Thelong-termsafetyofmedicalmarijuanauseinpillororalsprayformisnotknown.Medicalmarijuanainpillororalsprayformmaycausesideeffectssomeofwhichcanbeserious.Bothdoctorsandpatientsmustweighthepossiblesideeffectsthatmedicalmarijuanainpillororalsprayformcancause.ExceptforthesyntheticTHC-basedformulationMarinoltheothercannabisformulationsevaluatedinthestudiesarenotcommerciallyavailableinU.S.sopeopleshouldexercisecautionwhentheyconsidermedicalmarijuanaasatherapyforMS.ImportantlythereisnotenoughinformationtoshowwhetheranyCAMtherapiesinterferewithprescriptiondrugsusedtotreatMS.ThereisnoqualitycontrolformostCAMtherapiesincludingmostformsofcannabisandlackofU.S.FDAregulationoversightmakessafetyandefficacyofCAMtherapiesachallenge.MostCAMtherapiesarenotcoveredbyinsurance.WesuggestworkingcloselywiththehealthcareprofessionalstodecidewhetheranyCAMtherapieswouldbegoodchoicesinaparticularsituation.IfsomeonewithMSisalreadyusingCAMtherapiesweencouragethemtotalktotheirhealthcareprofessionalaboutwhetherevidenceforthosetherapiesisavailable.References1.ComplementaryalternativeorintegrativehealthWhatsinanamehttpnccam.nih.govhealthwhatiscam.Updated2014.2.YadavVBeverCJrBowenJetal.Summaryofevidence-basedguidelineComplementaryandalternativemedicineinmultiplesclerosisReportoftheguidelinedevelopmentsubcommitteeoftheamericanacademyofneurology.Neurology.201482121083-1092.3.Clinicalpracticeguidelineprocessmanual.2004thed.St.PaulMNAmericanAcademyofNeurology2004. CAMtherapyIndicationofuseLevelofNumberTherapyDurationevidenceofstudiesestablishedasofstudyGinkgobilobaCognitionA2ClassIIneffective12weekGinkgobilobaFatigueC2ClassIIPossiblyeffective4weeksOCEPatientreportedA2ClassIEffective12-15weeksspasticity1ClassII1ClasslllOCEClinicianassessedB1ClassIProbably15weeksspasticityineffectiveOralTHCPatientreportedspasticityB1ClassIProbably15weekssymptomspainnotthe1ClassllleffectivecentralnervepainOralTHCClinicianassessedB1ClassIProbably15weeksspasticityineffectiveOCEandoralTHCPatientreportedspasticityC1ClassIIPossibly12monthsymptomsclinicianeffectiveassessedspasticityOCEandoralTHCTremorB1ClassIProbablyineffective15weeksOromucosalSpasticitysymptomsB1ClassIEffective5-10weekscannabinoidspraypainurinaryfrequencystudyperSativexsymptomOromucosalClinicianassessedspasticityB1ClassIProbably6-10weekscannabinoidspraymeasuresandurinarystudyperineffectiveSativexincontinenceepisodessymptomOromucosalTremorC1ClassIIPossibly15weekscannabinoidsprayineffectiveSativexMagnetictherapyFatigueB1ClassIProbablyeffective12weeksMagnetictherapyDepressionB1ClassIProbably12weeks2Classllineffective3ClasslllLow-fatdietMSrelapsesdisabilityB1ClasslProbably24monthswithfishoilfatigueMRIlesionsor1ClassllineffectivesupplementationqualityoflifeReflexologyParesthesiasC1ClassIPossibly11weeks2ClassIIeffective1ClassIIICariLoderregimeDisabilitysymptomsC1ClassIIPossibly24weeksdepressionfatigueineffecticeBeestingtherapyRelapsesdisabilityfatigueC1ClassIIPossibly24weeksBrainMRIchangesorineffectivequalityoflifeOCEoralcannabisextractTHCTetrahydrocannabinolGreyhighlightedtherapieshavethehighestlevelofevidenceLevelA.Table3EvidenceofeffectivenessofCAMtherapies 14MSFocusFall2014Dr.VijayshreeYadavisaboard-certifiedneurologistwhoisfellowship-trainedinmultiplesclerosisandneuro-immunologyandhonoredwithamastersdegreeinclinicalresearchfromOregonHealthScienceUniversity.ShecurrentlyisanassociateprofessorofNeurologyatOregonHealthScienceUniversityinPortlandOre.SheiscurrentlytheClinicalDirectoroftheMSCenteratOHSU.Asaclinician-scientistsheisveryinterestedinimprovinghealthusingcomplementarytherapiessuchasdietarymodificationandsupplements.PushpaNarayanaswamiisassistantprofessorofneurologyatHarvardMedicalSchoolBethIsraelDeaconessMedicalCenterinBostonMass.Sheisaclinicianeducatorandresearcherwithsub-specialtytraininginneuromusculardisorders.SheisamemberoftheGuidelineDevelopmentDisseminationandImplementationsubcommitteeoftheAmericanAcademyofNeurology.ShereceivedhermedicaldegreefromBangaloreMedicalCollegeinIndia.ShecompletedherneurologyresidencyattheNationalInstituteofMentalHealthandNeuroSciencesinBangaloreIndia.ShemovedtotheU.S.in1995andcompletedanotherneurologyresidencyfollowedbyafellowshipinneuromusculardiseasesattheUniversityofTennesseeinMemphisTenn.FREEEDUCATIONALPROGRAMSBYPHONEJoinusfortheMSFocusRadiomonthlyteleconferenceseries.TuesdayNov.182014830p.m.Eastern530p.m.PacificIAmNotMyMSConfrontingStigmaShameandDiscriminationPresentedbyLaraSteplemanPhDTuesdayDec.92014830p.m.Eastern530p.m.PacificUsingExercisetoImproveWalkingandBalanceinMSPresentedbyHerbKarpatkinPTDScNCSMSCSTuesdayJan.202015830p.m.Eastern530p.m.PacificAdvancesinTreatmentofSpeechandSwallowingDisordersWhatEveryMSPatientNeedstoKnowPresentedbyMarissaA.BarreraMSMPhilMSCSTSHHCCC-SLPTojoinanyoftheseeducationalteleconferencescall888-550-5602andenter23441168uptofiveminutesbeforethescheduledstarttime.Youwillbeplacedonholduntiltheconferencebegins.Toviewthepresentationduringthecallconnecttohttpsccc.spiderphone.com23441168. 19MSFocusFall2014TwoverydifferentdietsarestirringdebateintheMScommunity.TheWahlsProtocoleliminatesstarchesandincludescertainmeatswhiletheMcDougallDietfocusesonstarchesandeliminatesmeat.WhatdoestheresearchsayaboutthesetwodietsandtheireffectonMSWhatdoyouneedtoknowMSFocusRadiorecentlyhostedtheleadingproponentsoftheseMSdietsDr.TerryWahlsandDr.JohnMcDougallinseparateinterviews.IntheseinterviewexcerptsyoullfindoutwhatthesedietsareandwhatevidencethereisfortheiruseinMS.Forthefullinterviewsvisitwww.msfocus.organdclickOnDemandAudio.TheTheWahlsProtocolWahlsProtocolAvoidsWheatgrainslegumesdairyEmphasizesLeafygreenssulfur-richvegetablescolorfulfruitsandvegetablesorganmeatsandfishTheBackgroundTheBackgroundMSFOurguesttodayisDr.TerryWahlsassistantchiefofstaffatIowaCityVAHealthcareclinicalprofessorofmedicineattheUniversityofIowaandauthorofthenewbookTheWahlsProtocolHowIBeatProgressiveMSUsingPaleoPrinciplesandFunctionalMedicine.CanyouletourlistenersknowalittlebitaboutwhereyouwerebeforeyoubeganthisprotocolDr.WahlsIn2000IwasdiagnosedwithmultiplesclerosisonthebasisofopticneuritisanewproblemwithmyleftlegIhadabnormallesionsinmyspinalcordandabnormalspinalfluid.Iknewthatathirdofpeoplewithin10yearswouldhavedifficultywalkingneedingacanewalkerorwheelchairandonehalfwouldbeunabletowork.SoIsoughtoutthebestMScenterthatIcouldfindandthatwastheClevelandClinicsawthebestpeopletookthenewestdrugsandstillwithinthreeyearsmydiseasetransitionedtosecondary-progressive.Sointhatphasethediseaseisprogressiveandtherearenomorespontaneousremissions.Mydoctorstoldmefunctionsoncelostweregoneforever.SoItookchemotherapygotthetilt-reclinewheelchairIeventookthatmiracledrugTysabributcontinuedtodecline.From2000to2007IwasatthepointwheremybellyandbackmusclesweresoweakthatIcouldntsitinaregularchairany-more.Ihadtobeinazero-gravitychairthatallowedmetoreclinefullyatwork.Icouldwalkshortdistancesusingtwowalkingsticks.Ihadseverefatiguewasexhaustedby10inthemorningandIwasjuststartingtohaveproblemswithbrainfog.In2002myneurologydoctorsat 20MSFocusFall2014ClevelandClinicintroducedmetotheworkofLorenCordainandthePaleodiet.After20yearsofbeingavegetarianImadetheverybigdecisiontogobacktoeatingmeat.Iremovedgrainslegumeswheatanddairyfrommydiet.In2002Istillcontinuedtodecline.WhenIhitthewheelchairin2004IstartedreadingthescienceandanimalstudiesaboutMSandotherdiseasesthatalsohadshrinkingbrainsandspinalcordslikeMS.IaddedsomevitaminsandsupplementsasIfoundstudiesthatwereusedinmicethatprotectedthosemousebrains.IfoundthatslowedmydeclineifImissedmyvitaminsonedayIfeltmuchworse.Sothevitaminswereclearlyhelpfulbuttheydidnotleadtotherecovery.Inthesummerof2007IdiscoveredtheInstituteofFunctionalMedicineandtooktheircourseNeuro-protectionAFunctionalMedicineApproachtoCommonandUncommonNeurologicSyndromes.IhadamuchdeeperunderstandingofthingsthatIcoulddotoprotectmybrainamuchlongerlistofvitaminsandsupplementsthatIamnowtaking.LaterthatfallIhadtheinsightthatIshouldtakethislistofnutrientsthatIwastakinginpillformandfigureoutwheretheyareinfood.Thatofcoursemeantmoreresearch.TheDietTheDietMSFCanyougiveusabriefdescriptionofwhatyourprotocolisDr.WahlsUltimatelythisnewwayofeatingstillbasedonPaleoprinciplesbutnoworganizedtomaximizethesenutrientsthatwereimportanttothebrain.InfactInowtrack36differentvitaminsmineralsessentialfatsandantioxidantstomakesurethediethasbeenspecificallydesignedtoprovidethosethingsandthatiswhatInowcalltheWahlsDiet.Werebasicallyaddingmoreleafygreenvegetablessulfur-richvegetableslikecabbagemushroomonionfamilydeeplypigmentedfoodslikecarrotsbeetsberriesgrassfedmeatswildfishandseaweed.Aspeopleprogressinthedietwehelpthemtransitionfromtheircurrentwayofeatingtoamorenutrient-densemorelow-glycemicwayofeatingthatisbetterforonesbrainhealth.MSFSoitsoundslikeitsmorethanaPaleodietyoureusingthePaleoprinciplesbutyoureaddingadditionalnutrients.Dr.WahlsYesIwanttomakeitcleartopeople.IwentPaleoin2002anddeclinedforfivemoreyears.Paleowasnotenoughtohealmeandwhileitmaybeenoughtohealpeoplewhoarenotsoillmanyrequireamoreintenseapproachthatsmorespecially-designedtolowerinflammationandmaximizenutrientstosupportdetoxification.MSFIunderstandthatyourprotocolcontainsmorethanjustdietthough.CanyoutellusalittlebitaboutthatandparticularlyaboutneuromuscularelectricalstimulationDr.WahlsAnotherthingIdiscoveredthatsummerwaselectricalstimulationofmusclesIdidthatbyreviewingthestudybyRickShields.Heusedittomaintaintheboneandmusclehealthofpeoplewhohavehadaspinalcordinjury.Theparticipantslikedtheinterventionsomuchtheydidntwanttostopsohesaskingtoextendthestudy.IthoughtthatwasveryinterestingandthereforedecidedtogetthatformyselfandsoIapproachedmyphysicaltherapist.HetoldmeItisnotapprovedforMS.Thisisusedforathletestohelpthemrecoverfromtheirinjuriestheathletesfinditexhaustingandpainful.Youhavealotofpainandfatigue.Wecouldprobablygrow MSFocusFall201421muscleinyourlegbutImnotsurethatyourbraincantalktothemusclesthatwegrow.Afteralongtalkheagreedtoletmehaveatestsession.Hewasrightithurtalot.ButattheendIfeltthebestIdfeltinyears.Sowebeganacourseoftrainingintheclinicthatlastedseveralweeks.ThenhedecidedthatIcouldtolerateitandthatIcouldsafelyoperateahomehealthdevicesoIbegantrainingathome.Italkaboutthisindetailinmybookhowtofindsomeonethatwillhelpgetyouatestsessionsomeoftheapprovedindicationsandchallengesingettingaccesstothishowtoapproachyourhealthcareproviderandphysicaltherapisttogettestsessions.TheResearchTheResearchMSFIunderstandyouvebeenconductingresearchonyourprotocol.WhatsthestatuswiththatnowandwhatkindoftrendsareyouseeingDr.WahlsIhadmyrecoveryin2008.In2009Istartedwritinguptheprotocolandthegrantsandwedidsecurefunding.Soin2010wehadthefundingtotest20peopleusingmydiettargetedvitaminsmediationandexercisesoeverythingthatIdid.ThiswassucharadicalnewconceptthattheinstitutionalreviewboardthatreviewstheresearchsaidOkayIlltellyouwhatyoucantake10people.Giveusasafetyreportandifeverythingissafenooneisharmedandthetrendsareinafavorabledirectionwewillletyoudothesecondten.Sowedidthatandpublishedtheresultsonthefirst10.Itshowedthatpeoplecouldimplementthestudydiet.Thebiggestsideeffectwasthatifyouwereoverweightyoulostweightandgotbacktoahealthyweightwithoutbeinghungry.Andthefatiguewithaseverityscalescorefromseventooneoneequalingnofatigueandsevenbeingtotalfatiguethatimprovedby2.38pointsonabaselineof5.70to3.32at12months.Thisisthelargestreductionoffatiguereported.Bycontrastifyouuseexercisetotreatfatigueyoucanseeanimprovementofabout.5.Thedrugstudieshavebeenvariableshowingnobenefittoshowingmodestbenefitatthe.6-.75range.Soanimprovementof2.38reallyisclinicallymeaningful.Veryveryexciting.AnditwasquiteremarkablethateveninthisverysmallsamplesizetheTvalueis.0008andthatisjustademonstrationofhowlargetheeffectsizeis.NowwehavemorestudiesgoingonthatarelookingattheexercisealoneanotherthatislookingatthedietaloneandanotherthatislookingatdietcomparingtheoriginalWahlsdietwiththeketogenicversionoftheWahlsdietandusualcare.Wearewritinggrantsallthetime.IjustsentagrantofftotheMSSociety.Wearehopefulbecauseourpreliminarydatanowissoexcitingthatwellhavegreatersuccesswithgettingfundingforamuchlargerstudy.FindoutMoreTheWebsitewww.terrywahls.comTheBookTheWahlsProtocolHowIBeatProgressiveMSUsingPaleoPrinciplesandFunctionalMedicineCommonGroundBothdietshavebeenproventohaveapositiveeffectonMSfatigue.Theyeliminatedairyencourageeatingavarietyofcolorfulvegetablesandfruitsandavoidprocessedfoods. MSFocusFall201422TheMcDougallDietTheMcDougallDietAvoidsMeatsdairyoilsprocessedfoodsEmphasizesRicegrainscornbeanscolorfulfruitsandvegetablesMSFTodaysguestisDr.JohnMcDougallnationallyrenownedexpertonhealthanddietcreatoroftheMcDougallDietandco-authorofarecentstudyontheeffectsofthatdietonMS.Letsstartfromthebeginning.WhatledtoyourinterestindietasaformofhealthcareDr.McDougallMyinterestreallygrewoutoffrustration.Medicinedoessomewonderfulthingswhenitcomestoathingcalledacuteproblems.Thesearethingslikelacerationsbrokenbonesinfections.Butwhenitcomestochronicdiseasedoctorscomeinwiththeirpillsandsurgeryandthedifferencetheymakeinapositivewayisreallyhardtoseesometimes.IwasfrustratedandIwantedtodoalottohelppeopleandwhenIappliedmyskillsasayoungdoctorIdidntseethosekindsofbenefits.ItookitasapersonalfailureuntilIrealizedthattheproblemisthatyoucantdealwithchronicdiseasebyjustaddingabunchofpillsandpotions.Butthereisawaytodealwithchronicdiseasethatistostopitatthesource.Theinjurythatisproducingtheillnesswehavetostopthat.Forexampleyouseeacigarettesmokerandtheyrecoughing.Theyhaveachroniccoughandmucusproduction.Thewayyoustopthatisyoustoptherepeatedinjuryof20or30cigarettesaday.Ifsomeoneisfallingdowndrunkandtheyhaveliverdamageasaresultofdrinkingtoomuchyoudontgivethemvitaminsorpillstosolvetheproblemyoustopthedailyconsumption.WhenpeoplearesufferingfromfoodpoisoningnowletsgetthistermonthetablenowfoodpoisoningiswhatcausesthemajorityofillnessthatpeoplesufferfrominmostWesterncountriesandoneofthosediseasesiscalledmultiplesclerosis.MSFAndwhatledyoutotheconclusionthatavegetariandietwasgoingtohaveapositiveimpactDr.McDougallWellitsalittleprematuretocallitvegetarian.WhatIteachisadietbasedonstarches.Starchesareacategoryoffoodthatarevegetableinmatterbutalsohavealotofcalories.WhenIsaystarchyoushouldthinkbeanscornsweetpotatoesandrice.ThosearethekindoffoodsthatIteachpeopletoeatandyestheyarevegetablefoodsandalongwiththoseyoueatnon-starchygreenredpurpleandyellowvegetablessuchaskalebroccoliandcauliflowerandsomefruits.ThemostimportantthingthatIteachisthatthedietshouldbemostlyfromstarchesgraintubersandlegumesthosekindsoffoods.Thosearethefoodsthatpeoplehavebeeneatingfortenfifteentwentythousandyears.Allmajorcivilizationshaveconsumedthosefoods.FromjustwhatIlearnedinhighschoolIshouldhavefiguredoutthatthedietofhumanbeingswasadietofstarch.WhenIlookattheMayanandtheAztecsandhowtheyrethepeopleofthecornandwhatIlearnedfromthepeopleinSouthAmericatheIncastheywerepotatoeaters.IntheFarEastyourelookingatpeoplethatarericeeatersandtheMiddleEastthatisthebreadbasketoftheworld. MSFocusFall201423TheDietTheDietMSFWithyourowndietprotocolcanyoutelluswhatyouspecificallyrecommendDr.McDougallIvebeendoingthisforover35yearsandIvetakencareofovertenthousandpatientsandwevepublishedresultsinscientificliteratureaboutchangingpeoplesdiets.PeoplewhocometoseemearetypicalAmericans.InfactifyougooutonthestreetrightnoworwalkoutofyourofficeandlookaroundyouwillseethepeoplethatItakecareof.Eightypercentofthepeopleinourcountryareoverweightandmostaresickbecausetheyresufferingfromfoodpoisoning.WhatIdoisItakepeopleyourfriendsyourrelativesyourcoworkersandbythewayyourchildrenItakethesepeoplewhoaresickfromfoodpoisoningtheyarebeingpoisonedbyredmeatpoultryfisheggscheeseandmilkandItakethemoffthosefoods.ButyoucantjustwalkuptopeopleandsayHeyyourenotgoingtoeathamburgersorpepperonipizzaanymore.TheythinktothemselvesImgoingtostarvetodeath.Whatyouhavetodoisinplaceofthatcaloriesourcefrommeatdairyandjunkfoodyouhavetoreplaceitwithsomethingelse.YousayOkayyouregoingtoeatastarch-baseddietwhatyouhavetoeatisoatmealforbreakfasthashbrownspancakesorwaffles.Forlunchyoucanhavebeansouppeasouporlentilsoup.Fordinneryoucanhavebeanburritosveggiesoverriceorpastawithmarinarasauce.Wehaveoverthreethousandrecipespublishedinbooksandonourwebsitethatmywifehasputtogether.Thestandarddietisfoodpoisoning.Itwouldbethesameasfeedingsomeoneleadyoutakeitawayandyourbodywilleliminatethetoxinandthebodywillhealandgetwell.Thatswhatyoudo.Youveheardthisbefore.Youveheardthisthateatingbaconbutterandbriewillmakeyousickandifyoustopeatingthesethingsyouwillgetwell.MSFSowiththisdietprotocolthatyourecommendisitdifferentforpeoplewithMSordoyourecommendthesamedietforallDr.McDougallItsthesamedietforhumans.Multiplesclerosisisanotherdiseaseoffoodpoisoning.Manymani-festationsoccurwhenyougetyourselfpoisonedwitharsenicorlead.Manymanifestationsoccurinthebodybutyouwouldntcallthemseparatediseasesfromseparatethingstheyreallduetothosepoisons.Likewiseyougetaninfectionfromletssaybacterialiketuberculosisforexampleyoucangetbraintumorsspinetumorslunginfectionandsoon.Youdontsaythattheyarealldifferentdiseasesyousayitsfromthetuberculosis.Itsthesamethingwithfoodpoisoning.Foodpoisoningdamagesthearteriesbowelstheskinandthenervoussystemandsetsusupfordiseasesthatareallsecondarytomalnutritionmalnutritionfromover-nutritionofanimalfoodsandoilsandanunder-nutritionofstarch.Theresultisbecauseofthisfoodpoisoningpeoplegetmultiplesclerosis.ThisisadiseasethatoccursonlywiththeWesterndiet.Backbefore1980therewerealmostnocasesofmultiplesclerosisinChina.Inpost-WWIIJapanvirtuallynomultiplesclerosis.ThesearediseasesthatonlycameoutwhenthosecountriesswitchedtotheWesterndiet.TheResearchTheResearchMSFTherecentstudythatyoudidwithOregonHealthandScienceUniversitycanyoutellushowthatstudywasstructuredandwhattheresultswere 24MSFocusFall2014FindoutMoreTheWebsitewww.drmcdougall.comTheBookTheStarchSolutionEattheFoodsYouLoveRegainYourHealthandLosetheWeightforGoodDr.McDougallIsetuparesearchfoundationtheMcDougallResearchandEducationFoundationwhichwasaprivate501c3foundationseveralyearsbackandraisedmoney.NotalotofmoneyintermsofwhatresearchcostsbutIraisedthemoneyandwenttotheOregonHealthandScienceUniversityin2008andaskedthemiftheyhadanyinterestinworkbasedupontheworkofpioneeringMSdietresearcherDr.RoySwank.Theywantedtosowestartedin2009.DoyouknowittookethicsboardtheIRBinstitutionalreviewboardatOregonHealthandScienceUniversityalmostayeartodeterminethatfeedingpatientsricecornandpotatoeswassafeIttookthemalmostayeartodeterminethattreatingapatientwithdietwasokaytodowassafe.Yetthesameboardwillapprovedrugsthatcostfifty-fivehundreddollarsayearandhavehorriblesideeffectsandquestionablebenefits.WestartedthestudywithonlyalimitedamountofmoneysoIwasonlyabletoenrollasmallamountofpeople60peopletotalwhichwehadtodivideintotwogroups.So30wentintothediettherapygroupand30wenttothecontrolgroup.Westartedin2009andfinishedthestudyin2013.WeevaluatedthetwogroupswithMRIscansandclinicalmeasuresandwegathereddataanditshowedsomereallyremarkablethingsintheshortperiodoftime.Firstofallweshowedthatitwassafeandsecondofallweshowedthatitimprovedthegeneralhealthofthesepeople.Wegotbetweenabouta10-to20-poundweightlossthatwaspermanent.Peopledontthinkthatpatientswillfollowahealthydietsowestudiedtoseeifpeoplewouldfollowthedietandwhatwefoundwasthattheaveragefatintakecomparedtothecontrolgroupthecontrolgroupwas40percentfatintakeintheyear.Theaveragefatintakedroppedto15percentofthecaloriesandwasmaintainedoverayear.Sopeoplepermanentlychangedtheirdietanddramatically.Theestimateis80percentofthepeoplefollowedthedietallofthetimefortheyear.Inotherwords10-to20-poundpermanentweightlossabouta20-pointdropincholesterolandsimilardropsinthelipidsinthepatientspermanentlyoverayear.TheotherthingthatitshowedthatwasquitedramaticandIthinkthatthiswouldbeimportantinfoforMSpatientsandtheirdoctorswasthechangeinfatigue.TheNMSSsaysthat80percentofMSpatientssufferfromfatigue.Whatweshowedwasadramaticdropinfatiguealmostovernightanditlastedthroughtheyear.WhatwedidntshowwaschangesindisabilityorchangesinMRIscans.Thereareseveralreasonsforthis.Oneisthatthiswasashortstudyitwasonlyayearandtwoweonlyhadalimitednumberofpeoplesowewerelimitedinwhatwecoulddo.Whatwedidinmymindwaskindofamazing.WeopenedthedoorfordiettreatmentforMS.Weshowedbenefitsthatyouhavetoacceptpermanentchangesinpeoplesdietsdramaticimprovementinoverallhealthdramaticdropinfatigue.Weshowedthosethings.WecanhelpMSpatientshaveabetterlife. 7-NightSouthernCaribbeanCruiseaboardRoyalCaribbeansAdventureoftheSeasdepartingSanJuanPuertoRicoonFeb.12015toCharlotteAmalieSt.ThomasBasseterreSt.KittsOranjestadArubaandWillemstadCuracao.InordertoparticipateintheMultipleSclerosisFoundationsprogramaboardtheshipyoumustbookthroughtheMSFbycalling800-659-0081954-322-1030800-225-6495orcruisemsfocus.orgCruiseItinerarySundayFeb.1DepartSanJuanPuertoRico-830p.m.MondayFeb.2CharlotteAmalieSt.ThomasArrive800a.m.Depart530p.m.TuesdayFeb.3BasseterreSt.KittsArrive800a.m.Depart500p.m.WednesdayFeb.4-AtSeaThursdayFeb.5OranjestadArubaArrive800a.m.Depart1000p.m.FridayFeb.6WillemstadCuracaoArrive800a.m.-Depart600p.m.SaturdayFeb.7-AtSeaSundayFeb.8ArriveSanJuanPuertoRico-600a.m. 26MSFocusFall2014IdontknowaboutotherswhohavebeendiagnosedwithmultiplesclerosisbuthavingdifficultieswithfacialrecognitionwasntnotedintheintroductoryMSbrochure.Notevenahint.IquicklylearnedthatwhileMSmaybedifferentforeachpersontherearemanycommonsymptomsandafewunspokenchallenges.PerhapslikeawhiteelephantgiftexchangereceivingthediagnosisofMSincludesunwantedsurprises.WithMShoweverthereisnore-gifting.ShareDontConcealItseemsthateveryoneknowssome-onewhohasMSespeciallysincetherearemillionsofpeoplediagnosedworld-widewiththischronicandprogressivedisease.Itisestimatedthat65percentofthispopulationwillfacecognitivedysfunction.Itaffectsmemoryattentionandconcentrationinformationprocessingvisualperceptionandword-finding.FormedelayedrecognitionrandomlyoccurswhiledrivinghomefollowinginstructionstryingtorememberwhyIwalkedintoaroomstrugglingtofollowaconversationorfinishingasentence.WithoutwarningwhileweweresittingonthecouchathomeIwasstunnedbymylossofpresence.ItwasanewanddisturbingMSdysfunctionformetheinabilitytoinstantlyrecognizemywife.Mytreatingneuro-psychologistconfirmedthatthehitchinmytaken-for-grantedrecognitionoffamilymembersandfriendswasanotherexampleofanMScognitivedisruption.GreatanotherMSgift.NotfairbutIhadtodealwithitandnotwasteenergyondenial.TheByJeffreyN.GingoldWhatwouldyoudoifafamilymembersuddenlydisappearedAwomanwassittingacoupleofseatsawayfromme.HerfacewasunfamiliarandIfeltconfusedbyit.Slightlyyoungerthanmenearing40sheseemedtobecompletelyatease.Wrappedinacable-knitwoolsweatershewascomfortablyfixatedonanobjectinthedistanceunawarethatIhadbeendrawninbyherface.Myeyesfollowedthefirmcurveofhersmoothcheekbonesandbrightgentlenessofhereyes.IwastornbetweenthecomfortIfeltsittingnearherandtheawkwardnessofstaringhopingtoavoidherdetection.QuicklystandingandwalkingawaywouldexposethatIhadnooriginalpurposeforsittingthereinthefirstplace.YethowcouldIwalkawayDeepinsideIsomehowknewthatshewasmywifeTerri.FromFacingtheCognitiveChallengesofMultipleSclerosis2ndEdition 27MSFocusFall2014doctorsmessagewassimple.ShetoldmethatasmallportionofthosewithMSmayencounterchallengeswithfacialrecognition.ThediscussionshiftedtohowIshouldsharethisinformationwiththosewhoareclosetomeandthereasonsnottoconcealit.Strategiesforsuccessfullycopingwithrecognitiondifficultiesmaybefoundthroughopendiscussionbeforeandafteritoccurs.ItisdifficulttodealwithanMSobstacleifnooneisdiscussingitanditcertainlywontgoawaybyignoringit.PerhapslikeotherMSmentalobstructionsimpairedfacialrecognitionneedstocomeoutoftheclosetforMSersandtheirtreatingmedicalprofessionals.TheforbetterorworsevowiskindofvaguebutIdoubtthatmywifeimaginedthattheworsepartmightincludemydifficultyrememberingherappearance.Keepitburiedandyoumayfindyourselfsecond-guessingtheusualmorninggood-byekissandbecomingsuddenlyuncertainofwhoisontheotherendofit.IknowmywifeandchildrenbutIvecaughtmyselfhesitatingwaitingforthecasualrecognitiontoclick.Ivelearnedtonotchallengethelapses.FortunatelytheyquicklyvanishunlessIprolongthedisorientingmomentbydwellingonit.IfIchallengetheinstincttogoonwithlifethenIbecomemoreofabystandernotwantingtodoorsayanythingwrong.IfthissortofrecognitiondelayoccurstoyouandyouarewonderingwhethertosharetheconcernwiththeotherpersonthenperhapsaskyourselfthissimplequestionWouldyouwanttoknowiftheotherpersonwasdealingwithrecognitiondifficultiessoyoucouldbesupportiveandworkthroughittogetherOrwouldyouwantherhimtokeepitprivateanddealwithitaloneExposethedoublestandardinyourthinkingandrealizethatnotopenlydealingwithrecognitiondelaysdoesnotprotectanyonefromthisMSimpediment.ThetruthformewasthatifthesituationwasreversedIwouldinsistonknowingwhatwashappening.NoonesolelyownsanMSchallengeespeciallywhenitaffectsothers.HandlingRecognitionLossHereareafewdetailsthatIamgladtoshareregardinghowwehandlemyimpairedfacialrecognition1.Knowyourrecognitionlimitsandunderstandthatrecognitionlossisunpredictable.Dontwastementalenergybyconcerningyourselfwithwhatmighthappennextsinceitmaynot.2.Seekaprofessionalopinionfromaneuro-psychologistwhocanconfirmtheimpairmentandMSlink.3.Talkaheadoftimetoclosefamilyandfriendssotheywillunderstandyourneedforaminutetosortoutyourthoughts.Thepausemayalsorelieveunnecessarypressuretostruggleforaconnection.4.Alsotellthepeopleyoucareaboutandwhocareaboutyouthatyouarehavingdifficultiesinthinkingandfocusingsothattheycanunderstandandsupportyou.BeforegraspingatcognitivedisconnectionsseekoutasafetypersonbackingyouupduringthoseconfoundedMSmentalmomentssoyouarebetterabletoholdstrongtoyourvitality.5.RememberthatifthisispartofyourMSthengivesignificantothers FacingtheCognitiveChallengesofMultipleSclerosis2ndEd.ThisbookoffersapersonalaccountofJeffreyGingoldsstrugglewiththecognitivedifficultiesthataccompanythestrugglewithMS.Thissecondeditionreleasedin2011hasbeenrevisedandupdated.Itcontainsmorerecentinformationonthediseaseandcontainstwonewchaptersthatcovertheauthorsexperiencessincethefirsteditionwasreleasedin2006.MentalSharpeningStonesManagetheCognitiveChallengesofMultipleSclerosisGatheringstrategiesfrompatientsandmedicalprovidersthisbookofferswaystodealwiththecognitivesymptomsofmultiplesclerosis.GingoldsbookhelpsthosewithMStokeeptheirmentalabilitiessharpthroughtipsandtricksfordealingwithcognitiveissues.TolearnaboutavailabletitlesintheMSFLendingLibrarycall888-673-6287orvisitusonlineatwww.msfocus.org.ClickonlendinglibraryunderthePublicationsheading.28MSFocusFall2014permissiontosoftlyremindyouofthemomentandgivethemahugforcaring.6.LaughterbringspeopletogetherandisasurvivalpaththroughMS.Useitoftenandperhapslearntolaughfirstandenjoyyourlife.Ifyouintentionallydidntwanttoremembersomeonefeelfreemakeitclearthatyouwouldletthemknowit.7.Seeyourdoctorsandtherapistsregularlytodiscusstheeffectivenessofyourtherapiesandwhetheranychangesareneeded.Takesolaceinknowingthatnothinghasbeenlostbutwithpatiencenewroutestofamiliaritymaybelearned.ByacceptingthatyoumaybeenduringMSthinkingdifficultiesyouwillbetterunderstandthechallengesleadingtosuccessfulcopingtechniquesandnotsurrenderingtothem.Whateverpathyouchoseforyourselfalwaysincludetimeforthoseextrahugs.Itwillreinforcearelationshipandbuyyouafewsecondsmoretogatheryourthoughts.Awin-windespiteMS.JeffreyN.Gingoldistheinternationallyacclaimedauthoroftheaward-winningbookFacingtheCognitiveChallengesofMultipleSclerosisaswellasMentalSharpeningStonesManagetheCognitiveChallengesofMultipleSclerosis. Onceadiagnosisofmultiplesclerosishasbeenmademedicationssuchasinterferon-betaareoftenstarted.Thismedicationisusedtoreduceinflammationinthebrainandthepositiveresultsindicatethatinflammationisakeycontributortomultiplesclerosisseverity.Inadditionmultiplesclerosisischaracterizedbyincreasesinmanydifferentinflammatorychemicalscalledcytokines.Theseinflammatorychemicalsmaydisturbtheblood-brain-barrierwhichnormallylimitsinflammationfromgettingintothebrain.Oncethisbarrierisdisturbedinflammatorychemicalscanenterthebrainwithgreaterease.Manynaturalsubstancescanreducethelevelsoftheseinflammatorychemicalsandreducedisruptionoftheblood-brain-barrier.Theimmunesysteminpeoplewithmultiplesclerosisshiftstowardsapro-inflammatoryimmuneresponse.Certaininflammatorychemicalscreatethistypeofdysfunctionalresponse.EvidencesuggeststhattheseinflammatorychemicalscanbeinhibitedbynaturalsubstancesincludingresveratrolSt.JohnsWortvitaminDandalphalipoicacid.Resveratrolworksbyinhibitingonespecificinflammatorychemicalcalledinterleukin-6anditisfoundinsourcessuchasredwinedarkcoloredberriesdarkchocolateandredgrapes.St.JohnsWortalsoinhibitsinterleukin-6andhastheaddedbenefitofreducingstresshormoneinthebody.VitaminDisapowerfulimmunomodulatorycompoundthatreducestheproinflammatoryimmuneresponseandinducestheproductionofcertaincellsthathelpcalmdownanover-activeimmunesystem.Alphalipoicacidisanantioxidantthatisshowntoreduceautoimmuneinflammationanditmayevenhelppreventopticneuritisinthosewithmultiplesclerosis.Omega-3fattyacidsalsoreducemanyoftheinflammatorychemicalsfoundinmultiplesclerosisandhavebeenshowntoreduceinflammationinthosepatientscurrentlyoninterferon-betatherapy.Inadditiontoreducinginflammationinthebodyitisalsoimportanttoaddressblood-brain-barrierdysfunctioninmultiplesclerosis.Oneimportantcontributortothisbarrierdisruptionisanelevationinacompoundcalledhomo-cysteine.HomocysteineiseasilytestedinthebloodanditoftenindicatesadeficiencyinBvitaminsespeciallymethylfolateB12andB6.Furthermoreanelevatedlevelofoxidativestressinthebodyalsocontributestobarrierdysfunctioninthebrain.Oxidativestressisanormalpartofagingandthewearandtearofliving.Therearemanywaystoreduceoxidativestressonadailybasis.FirsteatingnineservingsoffruitsandvegetablesdailyMSFocusFall201430ByKimberlyM.SandersND MSFocusFall201431especiallydark-coloredberriesanddarkleafygreenvegetablescanhelpreduceoxidativestress.Avoidingsimplecarbo-hydratessuchassugarsodawhitebreadwhitericewhitepotatoesandwhitepastawillalsoreduceoxidation.Thesesimplecarbohydratestriggeraninflammatorycascadeinthebodyultimatelyleadingtooxidativestressandbraininflammation.Lastlyincorporatinggreenteaintoaneverydayroutinecanbeasimpleandpowerfulwaytoreduceoxidation.Greenteacontainsantioxidantcompoundsthatfightoffoxidativestressandreduceinflammationinthebody.EarlyresearchontheactiveingredientingreenteaEGCGisshowingpromisingeffectsonreducingimmuneattacksandinflammationinautoimmunediseasesincludingmultiplesclerosis.Peoplewithmultiplesclerosiscanincorporatenaturaltherapiesintotheirhealthprotocolinordertoreduceinflammatorychemicalsandreduceblood-brain-barrierdisruption.SomeofthemostpotentnaturaltherapiestoachievethesegoalsincluderesveratrolvitaminDandahealthydiet.Ultimatelyahealthydietwithoutsimplecarbohydratesisthebaselineforhealthinthosewithmultiplesclerosis.Byincreasingantioxidantsinthedietandreducinginflammatoryfoodsmanypatientscangainmoreenergyandfeelwellagain.KimberlyM.SandersisanaturopathicphysicianandtheownerofArthroWellNaturopathiclocatedinMilfordConn.Specializinginthemanagementofautoimmunediseaseswithnaturalmedicineherpassioninpracticeistoidentifytriggersforautoimmunityandmodulatecytokineswithnaturalagents.ShegraduatedsummacumlaudefromtheUniversityOfBridgeportCollegeOfNaturopathicMedicinewhereshealsobecameresidentphysician.YoucanfindmoreinformationaboutDr.Sandersatwww.arthrowellnaturopathic.com.DONATINGYOURUNNEEDEDCARVANORTRUCKCANHELPFIGHTMULTIPLESCLEROSISMULTIPLESCLEROSISFOUNDATION800-225-6495800-225-6495TAXDEDUCTIONINYOURGARAGECONVENIENTFREEPICKUPWEDOALLPAPERWORK PERSPECTIVEonrelapsingMSChangeyour 2014BiogenIdec.Allrightsreserved.0814TEC-1009024225BinneyStreetCambridgeMA021421-800-456-2255Tecdera.comPRESCRIBEDPILLTHEforrelapsingMSintheUSsinceSeptember2013.1VisitTakeTecdera.comorcall1-800-456-2255ChooseTecfideraapillthathasthestrengthtocutrelapsesinhalf.Tecfideradimethylfumarateisaprescriptionmedicineusedtotreatpeoplewithrelapsingformsofmultiplesclerosis.ImportantSafetyInformationBeforetakingandwhileyoutakeTecfideratellyourdoctoraboutanylowwhitebloodcellcountsorinfectionsoranyothermedicalconditions.WhatarethepossiblesideeffectsofTecfideraTecfideramaycauseserioussideeffectsincludingdecreasesinyourwhitebloodcellcount.YourdoctormaycheckyourwhitebloodcellcountbeforeyoutakeTecfideraandfromtimetotimeduringtreatment.ThemostcommonsideeffectsofTecfideraincludeflushingandstomachproblems.Thesecanhappenespeciallyatthestartoftreatmentandmaydecreaseovertime.Callyourdoctorifthesesymptomsbotheryouordonotgoaway.ThesearenotallthepossiblesideeffectsofTecfidera.Callyourdoctorformedicaladviceaboutsideeffects.YoumayreportsideeffectstoFDAat1-800-FDA-1088.Formoreinformationgotodailymed.nlm.nih.gov.Tellyourdoctorifyouarepregnantorplantobecomepregnantorbreastfeedingorplantobreastfeed.ItisnotknownifTecfiderawillharmyourunbornbabyorifitpassesintoyourbreastmilk.Alsotellyourdoctorifyouaretakingprescriptionorover-the-countermedicinesvitaminsorherbalsupplements.ForadditionalimportantsafetyinformationpleaseseePatientInformationonthefollowingpage.Thisisnotintendedtoreplacediscussionswithyourdoctor.Ina2-yearstudyTecfideracutthenumberofrelapsesby49comparedwithplacebo.BasedonnumberofprescriptionsfromIMSNPAWeeklyDataSeptember272013-March72014andBiogenIdecdataonfile.TecderaisanoraltreatmentforrelapsingmultiplesclerosisMS.Ithasbeenshowntonotonlycutrelapsesinhalfbutalsoslowthedevelopmentofbrainlesionsanddelaytheprogressionofphysicaldisability.ThousandsofpeoplearoundtheworldhavetakenTecdera.Askyourdoctorifyoushouldtoo. PatientInformationTECFIDERAtekfiderahdimethylfumaratedelayed-releasecapsulesWhatisTECFIDERABeforetakingandwhileyoutakeTECFIDERAtellyourdoctorifyouhaveorhavehadTellyourdoctorifyouareHowshouldItakeTECFIDERAWhatarethepossiblesideeffectsofTECFIDERATECFIDERAmaycauseserioussideeffectsincludingdecreasesinyourwhitebloodcellcountThemostcommonsideeffectsofTECFIDERAincludeFormoreinformationgotodailymed.nlm.nih.gov.GeneralInformationaboutthesafeandeffectiveuseofTECFIDERAWhataretheingredientsinTECFIDERAActiveingredientInactiveingredientsCapsuleShell TishaHighlanderFruitsveggiesandwaterarethesecrettolifeJuicingmakesmefeelalivemybodycravesitandmyenergyisback.IfIgetstressedoutImightsleepforadayortwobutjuicinghashelpedwiththeupanddownbattle.DaunHecklerCloosIuseachiropractortokeepmybodyinalignmentwhichhelpsmetowalkwithoutassistancein5k10kandhalfmarathon13.1milesracesregularly.MicheleThompsonHowardIdidacupunctureforabit.Itmademefeelsomuchbetter.UnfortunatelyIneededtogothreetimesaweekat75eachtime.ItstooexpensivebutIlovedit.JeannineWashingtonIdrinkunsweetenedcranberryjuiceasapreventativetoUTIs.MaryJosephinaIuseessentialoils.Idecidedtotrythemwhenthenervepaininmyleftarmworsened.Icouldntwearsleevesbecausetheshirtmovingonmyarmwouldsendmethroughtheroof.FirstItriedaspeciallotionandthreeoilsshortlyafterthepainwasgone.AlsousingtheseoilswithaspecialmassagetechniqueRaindropTherapyhelpsmemovemyarms.Ialsousethemtokeepmecoolandenergized.Itelleveryonewhatamazingthingstheseoilshavedoneforme.AndreaMooreIexerciseswiminaheatedpoolatthegymandtakevitaminDfishoilmagnesiumB12andCentrummulti-vitamins.Imeditateanddolightyogaforbalanceissues.SleepisimportantsoInapwhenIamexhausted.ItrytogetagoodnightssleepeverynightwhichisachallengebutItry.Itrytokeeponsmilingandlaughingbecauselifeisshort.KariAlanisIvesignificantlychangedmydiettoincludeveganandgluten-freeoptions.Ihavetakenanall-naturalapproach.Iavoidoverprocessedfoodsandstickwithfruitsveggiesandnuts.AmyFarrahFowlerVegaOneofmyfriendsisamedicalmassagemanualtherapist.IseeherwhenIcantohelpwithspasticity.IalsohaveusedYogatohelpwithmybalancealthoughIhaventdoneitforawhile.IplantostartagainwhenIamable.TiffaniMRatliffIadheretoawell-researchedvitaminregimenincludingvitaminsCandDB12magnesiumpotassiumandiron.ThereareafewmorethatIcannotrememberimaginethatanMSmomentLOL.Sincetakingthevitaminsmycompletebloodcountamongotherthingslooksbetter.CathyOCallaghanFayIhavestartedtakinglow-doseNaltrexoneLDNanditishelpingme.LauraMannItakevitaminD5000iuturmericcurcumingoldandamultivitaminwhichhaveallbeenamazing.AlsoIoccasionallytakemedicalmarijuanaforthepain.ColleenFeganLOTSofswimminggotmeoffofacane.Iusetrainingflipperswhichworkyourmusclestogoupanddown.ShawnGrahmItakeB12shotsevery90days.Ijuicefruitsandvegetablesandtrytogetasmuchrestaspossible.MSFocusFall201435FacebookFeedbackisyourchancetoshareinadvanceyourexperiencesrelatedtotopicscoveredintheMSFocus.LikeourFacebookpageatwww.facebook.comMultipleSclerosisFoundationandwatchforournextFacebookFeedbackpost.OurquestionforthiseditionwasWhatkindofComplementaryandAlternativeMedicinedoyouuseandhowhasithelped MSFocusFall201436InMemoriumDr.WilliamMundyOnSept.262014asthisissuewenttopresstheMSFandtheMScommunitylostadearfriendandtirelessadvocateDr.WilliamL.Mundy.DirectoremeritusoftheMSFsboardofdirectorsandprofessoremeritusoftheUniversityofMissouriSchoolofMedicineinKansasCityMo.Dr.MundydedicateddecadestoexploringthecausesofMSandotherautoimmuneconditions.Hebeganhiscareerincardiologylaterbranchingintopsychiatry.Duringhissixty-yearmedicalcareerhedevelopedakeeninterestinautoimmuneconditionsandtheirfrequentappearanceinconjunctionwithdepressionortrauma.Dr.MundyheldthebeliefthatformsofcomplementaryalternativemedicinesuchasguidedvisualizationcouldbenefitthosewithMS.HeservedontheboardofdirectorsoftheMSFformorethan16yearswherehisworkhelpedshapetheMSFspositiveapproachtohealthandwell-beingforpeoplewithMS.Dr.Mundywaswellknownforhisgenerousandlovingnaturehissenseofadventureandhiskindhospitality.HeandhiswifeCarolhostedmanymembersoftheMSFfamilyintheirhomeovertheyearsincludingCo-ExecutiveDirectorAlanSegaloffandhisfamily.AlansdaughterKelseypicturedbottomrightreflectedonBillMundysaffectonherlife.Ivetalkedabouthimasmygrandfather-figure.Andheisandwasthatandmanyotherthings.Hesmyrolemodel.Theadventureshehadinhislifetimeandtheamountofpeopleheimpactedthroughoutareincredible.ThoughDr.Mundyisnolongerwithushislegacywilllongliveonthroughthoselivesheimpactedforthebetter.WewillmissyouBill MSFocusFall201437CallingAllAdvocatesAreyoureadytouseyourvoicetomakeadifferenceforpeoplewithMSJointheMSFsgovernmentadvocacyinitiativesnowNospecialskillsorexperiencearerequiredjustaninterestinspeakingupabouttheMScausetoyourstateofficialsandlegislators.WhataresomewaystohelpNationalMSEducationandAwarenessMonth2015isjustaroundthecorner.HelptheMSFreachthegoalofnationwideobservanceofthiscampaignbyrequestingitberecognizedinyourstate.FormanadvocacyactioncommitteewithothersaffectedbyMSinyourcommunitytobereadytorespondquicklytocallsforactionfromtheMSFandpartneragencies.VisityourstatelegislatorstointroducesamplelegislationbenefitingthoseaffectedbyMS.Wellprovideyouwiththeinformationandtoolsyouneedandworkwithyoueachstepoftheway.Tolearnmoreemailawarenessmsfocus.org. MSFocusFall201438EachNovemberinrecognitionofNationalFamilyCaregiversmonthwehonorthosespecialpeoplewhoselflesslydevotemuchoftheirtimeandattentiontocareforfriendsandlovedoneswithmultiplesclerosis.FortheMSCaregiversNightOutContestweaskedyoutotellusin100wordsorlesswhatmakesyourcaregiverspecialandhowheorshehasmadeadifferenceinyourlife.IngoingoutoftheirwaytohelpoutwithchoresprovideessentialservicesandofferemotionalsupportspouseschildrenandfriendshavemadeallthedifferencetotheirlovedonesafflictedwithMS.Thefollowingcarepartnerswerechosentoreceivedinnerfortwoatarestaurantoftheirchoice.WesalutethemandallcaregiverswhoworkhardeverydaytoassistthoseaffectedwithMS.ASonWhoCanAlwaysBeCountedOnAformernurseLoisPenlerwasdiagnosedwithMSfiveyearsago.Withthediseaseprogressivelyworseningshehaspoorbalanceandneedsawalkerandawheelchair.Whileherhusbandanddaughterhelpherprimarycaregiverisher23-year-oldsonMatthew.Astudentwhoworksfull-timeMattdoesthegroceryshoppingtakescareofthehouseandlaundryandtakeshertoappointments.Mattalwaysofferstohelpinanywayhecan.IamsogratefultohavehimHeiskindwithaverygoodheart.Iamsoluckytobeabletocountonhimshesaid.APreciousAngelNominatinghergranddaughterAlexPeggyDillowsaidIdontknowwhatIwoulddowithouther.Thebusy16-year-oldalwaysmakestimeforPeggywhileholdingdownajobattendingschoolandparticipatinginsports.Alexevenplansdatesforthetwoofthem.ShesalwaystheretodrivemecleanmyhouseandevenmowmyyardPeggysaid.Alexisapreciousangeltome. 39MSFocusFall2014APositiveInfluenceInnominatinghismotherMarthaJonesGaryCifracallsherthehardestworkingwomanIknow.ShereallyspoilsmeAt86yearsoldMarthavisitstwiceamonthtocookandcleanandhelpGaryswiferedecoraterepairandpaintthehouse.WhileGaryisinapowerchairandislegallyblindheattributeshispositiveoutlookonlifetohismother.MomgrewupduringtheDepressionwhereshedevelopedherspunkydo-it-yourselfcan-dospirit.Shehasalwaysbeenbymysidethroughgoodandbadloyaltotheendhesaid.ThePowerofYesBarbaraAckermansroommateLugenesaidyestoadiseaseshedoesnthave23yearsagoandthingswereneverthesameagain.PraisingLugenesdedicationtohelpingherBarbarasaidShehastrulybeenthewindbeneathmywings.LugeneassistsBarbarawithshoweringanddressing.WhenshecooksLugenemakesitapointtoaddnutritiousvegetablestopre-madedishes.CallingLugeneadiligentshopperBarbarasaidthatLugenepridesherselfonsavingmorethanshespends.WithoutherhelpthelifeIenjoywouldbeimpossibleandIameternallygratefulforitBarbarasaid.TheyRockKariRoota32-year-oldsinglemotherofthreewantedtodosomethingniceforherparentsRandyandSue.ThatswhyshenominatedthetwofortheCaregiversNightOut.TheyhavegoneaboveandbeyondtohelpmeandmykidssaidKari.Everydaytheyhelpme.TheynevercomplainorstopevenwhenIsayImokayoutofguiltovermyillnessaffectingtheirlivestoo.Hermomanddadtakeherkidstoschoolandtakecareofthemwhenthingsarebadorshesinthehospital.Hermotherhasresearchedmultiplesclerosisandherfatherhelpswithhouse-workandcooking.TheybothhelpmesomuchIcouldneverrepaythemorsaythankyouenough.Theyaremyrocksshesaid. HonoringHisFatherIshouldntbealivesaidNickLoMonteJr.praisingtheeffortsofhisfatherwhogavehimanewleaseonlife.Youhavekeptmealive.YouliterallygavemeCPR.InnominatinghisfatherforCaregiversNightOuthonorsNicksaidthathewouldbehomelesswithoutthefatherwhohelpshimtoseeandoffersplay-by-playwhentheywatchgames.Nicksfatheralsomakessurethathegetsfoodthatiseasytoswallowavoidingtheriskofchoking.NobodyelsewoulddothatformesaidNick.Theresalsoanothervitalthingthefatherdoeshissonsaid.Youmakemelaughallthetime.AMothersLoveFocusingoncompletingherstudieshasbeendifficultfor17-year-oldJasminewhowasdiagnosedwithmultiplesclerosisjustpriortograduatinghighschool.Igetreallyaggravated.Mymomdoesherbesttocalmmedown.ThatispartofthereasonwhyJasminenominatedhermotherVickiHallfortheCaregiversNightOut.AsinglemomoftwogirlswhoiscompletinghercollegedegreeVickihasmissedworktotakeJasminetodoctorsappointmentsinAtlantaandMaconGa.SheneverletsmefeelherstressorletsmedownshejustkeepsasmileonherfaceandtellsmethatyouarefineandeverythingisokayJasminesaid.Iloveyousomuch.WonderWomanBrianMcGrailnominatedhiswifeBrendafortheCaregiversNightOut.AmotheroftwoandaformercaregivertotheelderlysheisoftencalledMom-Dadbecauseoftheworkthatgoesintoraisingtheirchildrena5-year-olddaughteranda3-year-oldsonandtakingcareofherhusband.CallinghimselfthethirdchildinthefamilyBriandescribeshowBrendatakesoneverythingfrompackingschoollunchestohelpinglifthimintobedatnight.SheisWonderWomanhesaid.MSFocusFall201440 MSFocusFall201441DynamicDuoSinceshewasnotevenayearoldJanellehasnothadanormalchildhood.HermotherSharonSchmittbergerwasmisdiagnosedbeforegivingbirthandhashadMSthroughoutthe23yearsofJanelleslife.FromthebeginningSharonshusbandBobstoodbyherside.FortheirsupportSharonnominatedthembothfortheCaregiversNightOut.BesidestheproblemsthatcomewithMSSharonhasalsohadadditionalhealthproblems.WhenSharonisbedriddenherdaughterJanellelaysbesidemetogetmethrough.MyhusbandhasbeenmysightmystrengthsupportwhenIhitrockbottomandhastotallyheldourhometogether.Ifeelbeyondblessedtohavethembothinmylife.BestFriendEverJanetGrinzingerandAllisonhavebeenfriendsfornearly30yearsandjokethattheyaresistersbychoice.AlongwithMSGrinzingersuffersfromfibromyalgiawhileraisingasonwithspecialneeds.Thetwohavebeenthroughalottogetherincludinghavinglost25poundssofarasdietingpartners.Allisonisararegemasshereallymeansitwhenshesaysshewantstohelp.Shehasprovidedmuch-neededrespitenumeroustimesandismysupportsystemwhenIneedashouldertoleanoncryonorcomplainto.Shewillinvitemyfamilytooutingsinthecommunityhangoutwithmysonandinviteustothepool.WhatmakesAllisonaspecialfriendisthatnotonlydoesshehelpmeandcountlessothersinourcommunitybutsheisalwayscheerfulandpositiveJanetsaid.StillTogetherAfterAllTheseYearsAfter43yearsofmarriagePetestillsupportsandencourageshiswifeCarmen.RetirementwasntwhattheyhadexpectedthankstoCarmensMS.HehadtogiveupalotofthingshewantedtodototakecareofmyneedssaidCarmen.Thoseneedsincludetakinghertodoctorsvisitsshoppingmakingmealsanddoinghouseholdchores.HehelpsherattendMSsupportgroupmeetingseventsandyearlywalks.HedoesthiswhiletakingcareofCarmenselderlyparentsages87and92.HestillmakesmefeellovedandwantedgivesmecomplimentswhenIamhavingabaddaylaughswithmeatmylittlefoiblesandreassuresthattomorrowwillbeabetterday.BestofallhemakesmefeelIamstillneededCarmensaid. MSFocusFall201442Manypeoplewithmultiplesclerosisexperiencetemperaturesensitivity.Achangeincorebodytemperaturecancauseatemporaryworseningofsymptomssuchasblurryvisionnumbnessortingling.Heatismorecommonlytheculpritbutsomepeoplealsoexperiencesimilareffectsincoolconditionstoo.Itisimportanttokeepthisinmindespeciallyifyoulivesomewherethatexperiencesextremetemperaturechangeshaveafeverorareexercising.WhydotemperaturechangesaffectpeoplewithMSandwhataremethodsforcombatingtheeffectsofoverheatingMSandHeatMSattacksthemyelincoatingaroundnervescausingdemyelination.Muchlikeafrayedwireadamagednervemaybeabletoconductsomeelectricitybutitisnolongerinperfectworkingorder.Demyelinatednervescausesymptomssuchasvisionchangesnumbnesstinglingandpain.Peoplewithrelapsing-remittingMSexperienceacuteepisodesofdemyelinationfollowedbyperiodsofremissionduringwhichtheirnervoussystemcanfindwaystocompensateforsomeofthedamagethathasbeendone.ThisiswhataccountsforthewaxingandwaningofsymptomsinpeoplewithRRMS.Howevereventhoughsymptomsmayimproveordisappearaltogetherthenervesarestilldamagedandhavetoworkovertimetocompensate.WhenyourbodygetstoohotortoocoldelectricalimpulsesareslowedevenfurtherleadingtowhatwecallUhthoffsphenomenonorpseudo-exacerbations.Thesesymptomstypicallystartwhenyougetoverheatedandgoawayonceyourbodytemperaturereturnstonormal.KeepingYourCoolStudieshaveshownthatregularexercisecanimproveMSsymptomsbutironicallygettingoverheatedcanacutelyworsensymptoms.ButdontgiveuptherearewaystobeattheheatwhilestayinginshapeHerearemypersonaltipsforfiveeasythingsyoucando1.MypersonalfavoritegymaccessoriesareMissionAthleteCaresCoolingArmSleevesImnotaffiliatedwiththeminanywaytheyjustmakeagreatproductandcoolingtowels.Youaddwatertobothitemsringthemoutandtheyinstantlybecomecold.Idrapethetowelaroundmyneckanditkeepsmeniceandchilled.Thesearepopularproductsamongathletestoosotheycanusuallybefoundatanysportinggoodsstore.TheyworksowellthatIsentthemByStephanieButlerNPMSCN MSFocusFall201443toagoodfriendofminewhilehewasdeployedwiththemilitaryandhavingtoendure105degreeheatandhealsofoundthemtobeextremelybeneficial2.Themostefficientmethodofcoolingisevaporation.WiththatinmindIamalwaysarmedwithoneofthosespraybottlesthathasafanattached.Acoupleofspraysandsomefanningcandefinitelyhelpkeepyoucool.3.Drinkicecoldwatertokeepyourselfcoolfromtheinsideout.Manyofmypatientsalsofreezegrapesandsnackonthemthroughouttheirworkouts.4.Chooseactivitiessuchasyogaorswimmingthataregoodforyoubutdontleaveyouinaflopsweat.5.WhateveryoudomakesuretostayproperlyhydratedColdPackingItInIfyouaresickandhaveafevermakesuretocontactyourdoctorbecauseitisimportanttokeepyourfeverdown.Over-the-countermedicationscanbeusedandifyouarefeelingbravecoldshowersandicepacksalsohelptremendously.Inthehospitalwewillplaceicepacksinareaswithalotofbloodvesselssuchasthearmpitsgroinandthebackoftheneckinordertogethighfeversdown.Justbesuretoneverplaceicedirectlyontheskinandinsteadwrapitinatowelorotherinsulator.Ifyouexperienceworseningsymptomsinhotorcoolconditionsmakesuretolistentoyourbodyandtrydifferentstrategiesinordertofindtheonethatworksforyou.DoyouhaveanyothertipsandtricksforfightingtemperaturesensitivityLetusknowwhatyouthoughtofthisorotherarticlesEmailyourcommentstoeditormsfocus.orgormailtotheaddressonthebackcoverAttnMSFocusLettersColumn.StephanieButlerisanICUnursewhowasdiagnosedwithmultiplesclerosisattheageof25.SixmonthsafterbeingdiagnosedshebecameamultiplesclerosiscertifiednurseandstartedworkingintheMScenterwhereshewasapatient.Herdiagnosiswasadefiningmomentinherlifebutshefeelsthatithasmadeherabetternurseandabetterperson.SheisalsoattendinggraduateschooltobecomeanursepractitionerandshehopestocontinueworkingwithpeoplewhohaveMSforaverylongtime.ShealsowritesforMultipleSclerosis.netandservesontheAdvocacyCommitteeattheNewJerseyMetroChapteroftheMSSociety.Herblogwww.justkeepsmyelin.comoffersauniqueperspectiveonmultiplesclerosisfromthepointofviewofbothahealthcareproviderandasapersonlivingwiththediseaseeveryday.HermissionistobringcompassionhumorandadeeperunderstandingofMStoanyonewhoreadsit. 44MSFocusFall2014ByAlissaAydenTheMultipleSclerosisFoundationIndependentSupportGroupNetworkisgrowingPleasewelcomethefollowingnewly-affiliatedgroupsAshlandCircleofHopeMSSupportGroupAshlandWis.BradfordManorsMSandPDSupportGroupBradfordPa.RoanokeValleyMSSupportGroupRoanokeVa.SoudertonMSSupportGroupTelfordPa.VitalityMSSupportGroupEriePa.Pleasevisitourwebsiteatwww.msfocus.orgsupport-groups.aspxforthemeetingdatestimesandlocationsoftheseandothersupportgroupsonournetwork.Mostpeoplewouldsaythatthenumberonereasontojoinasupportgroupistofindanunderstandingandencouragingcommunityofpeersrightinonesbackyardwithwhomtosharestoriesexperiencesandinformation.WhilethisiscertainlythecasedidyouknowthatouraffiliatedsupportgroupsprovideevenmoreWhenyouthinkofadescriptionofasupportgroupthewordfunmaynotimmediatelyspringtomindbutitshouldForexampleherearesomeoftheactivitiesandhobbiesouraffiliatedsupportgroupshaveparticipatedinthisyearbowlinggoingonpicnicstakingtripstothecinemadiningatlocalrestaurantsvisitingcityparksdecoratingpumpkinsattendingarodeoplayingboardgamesmakinggreetingcardsvolunteeringatlocalcharitiestryingoutlaughteryogagardeningforhummingbirdsandsharingsummercookouts.AsidefromprovidingyouwithanopportunitytohavegreattimeswithawholenewgroupoffriendsjoininganMSF-affiliatedsupportgroupmeansbecomingpartofsomethingbiggerthanjustyou.AttheMSFwerefertooursupportgroupsasoureyesandears.WerecognizethatthemoreweknowabouttheneedsandinterestsofMScommunitiesaroundthecountrythebetterablewewillbeatfulfillingourmissionofprovidingprogramsandsupportservicestothosepersonsaffectedbyMS.AsupportgroupprovidesyouwithanopportunitytobrainstormwithyourfellowmembersandsendyourideasandfeedbacktotheMSF.ManyoftheMSFsnationalprogramswerestartedbecausepeoplewithMSaroundthecountryreachedouttouswiththeirthoughtsandwishes.TheMSFiscontinuallyonthefrontlinesofraisingawarenessandensuringthattheneedsoftheMScommunityaremet.BybecomingpartofanMSF-affiliatedsupportgroupyoucanbeonthefrontlinesalongsideustooTolearnmoreabouttheMSFsSupportGroupProgramandhowyoucanapplytostartoraffiliateyoursupportgrouppleasecontactmeviaphoneat888-MSFOCUS673-6287orviaemailatalissamsfocus.org.Ilookforwardtohearingfromyou 45MSFocusSummer2014 47MSFocusFall2014CruiseforaCause2015SpeakerChangeDr.RandallT.SchapiroMDFAANpresidentoftheSchapiroMSAdvisoryGroupandclinicalprofessorofNeurologyretiredattheUniversityofMinnesotawillbereplacingDr.DanielKantoronthe2015CruiseforaCause.Dr.SchapirohaslecturedandwrittenextensivelyonalltopicsassociatedwithMSmanagementbothnationallyandinternationally.Dr.RandallT.SchapirosprogramsTheChoppySeasofHealthcare-Howtobeyourownadvocateasitrelatestohealthcarecoverage.TrackingtheMSStorm-HowdoyouknowifyourDMTisworkingIfyoutransitiontoSPMShowwillyourdoctordeterminethathasoccurredWhatsortofdiagnostictoolsareavailabletodetermineyourMSstatusDontComeA-KnockingWhentheShipIsRocking-SexualityandMS.HealthcareAssistanceProgramAreyouuninsuredbutneedtovisityourneurologistbecauseofMSThisprogramhelpsindividualswithMSwhohavelosttheirinsuranceandcannotaffordtoseeaneurologisttogetthecaretheyneed.Theprogramfundsaninitialandfollow-upvisit.Weworkwithneurologistsofficesthroughoutthecountrytosecuretheofficevisitsforyou.TheProgramServicesDepartmentcanmakeapplicationsavailableviaemailfaxormail.Contactusat888-673-6287orbyemailatsupportmsfocus.org.InOurOfficeTheProgramServicesDepartmentisspot-lightingindividualswhohelpbridgethegapbetweentheFoundationandourcommunity.InthiseditionweshinethelightonVickiKnobel.VickiKnobelhasworkedinthesocialservicesfieldfor25years.ShehasbeenemployedbytheMSFforthepastsixyears.ShebeganasacaseworkerintheProgramServicesDepartmentandnowsheistheCyclicalProgramsCoordinator.VickicoordinatesfourofourgrantprogramstheCoolingGrantProgramComputerGrantProgramHealthcareAssistanceProgramandtheBrighterTomorrowGrantProgram.SheattendedSaintLeoUniversityinTampaFla.andgraduatedwithaBAinpsychology.BookletUpdateAneweditionofthebookletHelpfulInformationforPeoplewithMSandTheirFamilieshasbeenreleased.Thebookletwasrevisedtoincludethelatestinfor-mationondrugtreatmentsforMS.Thebookletnowincludesinformationonallcurrentlyapproveddisease-modifyingtherapiesincludingtherecentlyFDA-approvedmedicationPlegridy.Italsoreflectsrecentchangesinhowcertaindrugsareadministered.TorequestacopyofthishelpfulguidecontacttheProgramServicesDepartmentat888-673-6287orbyemailatsupportmsfocus.org. ByEllenWhippleGuthrieBSPharmDUpdatesbythePharmacistspotlightsthelatestsignificantresearchonMSmedicationsaswellaspharmaceuticalissuessignificanttoMScare.Noendorsementisimplied.Itisimpossibletosaythatanythingdrugadditivefooddeviceetcis100percentsafe.Howeveritisrelativelyeasytoexaminescientificdataanddifferentiatefactfromfiction.TheInternetisanexcellentsourceofinformationbutthedatapostedontheInternetareonlyasreliableasthepersonpostingtheinformationorthesupportinginformation.ForyearsInternetpostingshavesuggestedthataspartameorNutraSweetcancausemultiplesclerosis.Thisinformationcanbeparticularlyworrisomeforpeoplesincetheexactcauseofmultiplesclerosisisnotknown.Thisarticlereviewsavailablefact-basedscientificdataonthetopic.UnderstandingAspartameIn1965chemistJamesSchlatteraccidentallydiscoveredthehigh-intensitysweetenerknownasaspartame.Beforeitsapprovalintheearly1980sbytheU.S.FoodandDrugAdministrationFDAaspartameunderwentextensivereviewtodemonstratethatitwassafeforhumanconsumption.Sinceitsapprovalalmost40yearsagoaspartamehasbeenconsumedinmorethan6000productsbyhundredsofmillionsofpeopleinhundredsofcountriesthroughouttheworld.Aspartameistheingredientthatmakesfoodsprimarilycolaslightlow-calorieordiet.Sinceitisimpossibletodetectallsideeffectsinpremarketingstudiesaspartamehasundergoneextensivepostmarketingsurveillancetoensurethattheadditiveissafe.MetabolismofAspartameThemetabolismofaspartameandtheproposedtoxicitiesfromthesemetaboliteshaveconcernedmanypeopleandhavebeentheemphasisofvariouspost-marketingsurveillancestudies.Aspartameismetabolizedbydigestiveesterasesandpeptidestothreecommondietarycomponentsaminoacidsasparticacidandphenylalanine.Minuteamountsofmethanolcanalsobedetected.Eatingfoodssuchasmeatmilkfruitsandvegetableswillalsoproducethesesamecomponentsbutingreateramountsthanaspartame.Forexampleaglassofmilkhassixtimesmorephenylalanineand13timesmoreasparticacidandaglassoftomatojuiceprovidessixtimesmoremethanolthanabeveragethesamesizesweetenedwith100percentExaminingtheSafetyofAspartame48MSFocusFall2014 aspartame.Interestinglyenoughitisimpossibleforhumanstodigestenoughaspartametoraisethelevelsofthesemetaboliccomponentstoadangerouslevel.LackofScientificDataAsearchofthepublishedmedicalliteratureinEMBASEandPubMedusingthepreferredtermsmultiplesclerosisandaspartamefailedtoidentifyanyscientificreportsi.e.casereportsorcontrolledclinicaldatasuggestingalinkbetweenaspartameandmultiplesclerosis.Howeveranecdotalreportsorreviewdatawithlimitedscientificmerithavesuggestedthataspartamecausesvarioushealthproblemsincludingmultiplesclerosis.ThesereportspromptedtheFDAtorequestthattheCentersforDiseaseControlCDCinvestigatetheconcerns.TheCDCanalyzedmorethan500reports.Adverseeventsassociatedwithaspartameweredividedinto2categoriesneurologicalandgastrointestinal.Two-thirdsofthepeopleexperiencedneurologicalproblemswhereasone-quarterofthepeopleexperiencedgastrointestinalproblems.Theneurologicaleventsprimarilyconsistedofheadachesmoodalterationsinsomniadizzinessandfatigue.Thegastrointestinalsymptomsprimarilyincludedabdominalpainnauseadiarrheaandvomiting.TheCDCconcludedThemajorityofsymptomsweremildandaresymptomsthatarecommoninthegeneralpopulace.TheCDCalsonotedthattherewasnoscientificevidencesupportingtheclaimthataspartamecausescertaindiseasesincludingmultiplesclerosis.LessonsLearnedAboutAspartameAsmentionedpreviouslynothingcanbeconsidered100percentsafe.Aspartamehasundergoneextensivepre-andpost-marketingsurveillance.Withtheexceptionofafewverymildsideeffectsaspartameappearstobesafe.Thoseindividualswhoexperienceproblemsafterconsumingaspartameshouldstopconsumingfoodsandbeveragesthatcontainthissweetener.Therearenoreliablescientificdatasupportingtheclaimthataspartamecausesmultiplesclerosis.EllenGuthriehasbeenamedicaladvisorwiththeMSFsince2002.SheisaclinicalpharmacistemployedasamedicalaffairsspecialistaswellasanassistantclinicalprofessorattheUniversityofGeorgia.ShereceivedherDoctorateofPharmacydegreefromtheUniversityofGeorgiaCollegeofPharmacyin1994andwaslateremployedattheShepherdCenterandChildrensHealthcareofAtlanta.EllenisanactivememberoftheGeorgiaSocietyofHealthSystemPharmacists.ShehasalsoservedonthePharmacyAdvisoryCommitteefortheDepartmentofCommunityandHealth.49MSFocusFall2014 MSFocusFall201450ItwasMarch72010amonthandahalfafterthedevastatingearthquakeinHaitithatkilledhundredsofthousandsofpeopleandleftmanymorehomeless.IdidmybesttocontributetothecommunityincludingmakingbakedgoodstobedistributedataconcertbylocalmusicianstitledHelpforHaitiheldatCinemaArtsinHuntington.OnthisOscarSundayIwaslookingforwardtowatchingtheawardsceremonyontelevision.NothavinggonetotheFellowshipthatmorningIwasstillinmypajamascomfortablysittinginmyreclinerreading.EventhoughIwasgettingsignalsfrommybladdertoheadtothebathroomIwasmoreinterestedinfinishingthechapter.YoudthinkIwouldhavelearnedmylessonbynowandnotputoffrelievingmyselfbutno.IconvincedmyselfthatIdbefinejustreadingafewmorepages.WhenIfinallypressedtheupbuttononmyreclinerIrealizedIhadwaitedtoolong.OnmywaytothebathroomIcouldfeelurineseepingdownmyleg.Bynowmyunderpantsandpajamabottomsweresoaked.SothereIwasstandinginfrontofthebathroomsinkrinsingoutmyclotheswithmylefthandmyrighthandclingingtothehandleofmywalker.IsqueezedoutasmuchwaterasIcouldandtossedthegarmentsintotheshowerstall.InonefellswoopIhurledthewetmassinthedirectionoftheshowerstall.ThatswhenIlostmybalanceandfeltmybodyshiftingoutofcontrol.BeforeIknewitIlandedheadfirstintheshowerstall.IsomehowfoundthestrengthtoturnmybodyuprightbutrealizedIcouldhardlymovemylegs.Therewasnohopeofstandingup.NowwhatIsaidtomyself.Itriedtostaycalmandsurveythearea.Myfirsthurdlewastotrytoreachmywalkerwheremytelephonewassnuginthepocketholderhangingfromthefrontbar.ButIcouldhardlymove.Mywalkerwasinfrontofthevanityaboutsixfeetaway.ThankfullyIcouldmovemyarmssoIusedthemtomanipulatetheshowerchair.Myhopewastogetthechairlegtohookontomywalker.Thattookabout20minutesofexertion.WithallmymightItriedtoreachthelegofthewalkerbutwasshortabouttwofeet.WhatamIgoingtodonowIwasalreadytiredfromtryingtoshiftmybodyaround.Surelyoveranhourhadpassed.Icameintothebathroomabout3p.m.Icouldseefromthewindowthatitwasstartingtogetdarksothatmeantitwasabout430p.m.ItoccurredtomethatmaybeLindaandPatmylandlordsmightseethattherewerenolightsoninmyAnIncidenttoRememberHaitianHardshipOffersLessonsAfterFallByLouiseCurtisSeidl MSFocusFall201451houseandwonderifsomethingwaswrong.Maybetheywouldcallmeup.ButeveniftheydidcallIcouldntanswerthephone.TheywouldlikelythinkIwasjustoutfortheevening.Mybodywasgettingmoreandmoretired.IhadtofacethefactthatIwasstuck.HorribleimagesofsufferingHaitianstrappedundermoundsofdebrisfloodedmymind.IncomparisonallIhadtodowaswaitLuziwouldbecomingthefollowingmorning.AlthoughuncomfortableIwasntbleedinghurtorinpainIhadtofindthestrengthtostickitout.Mychallengewashowtospendthenext14hoursuntilLuziarrived.WhathelpedmemostwasrealizingthatIdidnthaveitsobad.InrealityitwasapieceofcakecomparedtothehardshipsHaitiansexperienced.ItdawnedonmethatIcouldspendtimerecountingstoriesliketheonesthatIusedtotellmydaughters.Andthenthereweresongs.Ispentyearsplayingtheguitarandsingingtomychildrenandinlibrariesschoolsandchurches.WhenIstudiedinFranceIlearnedsongsbyGeorgesMoustaki.WhenIlivedinBuenosAiresIlearnedmanysongsinSpanish.Nowwasaperfecttimetosingmyheartout.TheactofsinginghelpedtoeasemystressIsangonandonandsurprisedmyselfbyhowmuchIremembered.BeforelongIwasevenabletodozeoff.Iwasawakenedbythemorninglightstreamingthroughthewindow.TheturnofthekeyinthefrontdoorheraldedLuzisarrival.IcalledoutLuziSherushedintothebathroom.SeeingmesprawledintheshowerstallwasitarushofadrenalinethatgaveherthestrengthtoswoopmeuptoastandingpositionAhdearLuziShecametomysweetrescue.Allelujahlifeisgood.InevergottoseetheOscarsthatSunday.WhatIgotinsteadwasarenewedappreciationforlifeandareconfirmationofinnerstrengthinthefaceofhardship.LouiseCurtisSeidlwasdiagnosedwithMSin1995.HersupportgroupReachingforthatSilverLiningmeetsinGreenlawnNY. 52MSFocusFall2014Identitytheftisamajorconcernintodaysdigitalworld.Whetheryoushoponlineornotitspossiblethatcompanieshaveandstoreyourinformationonline.Andalthoughyoudonothavecontroloverhowtheseinstitutionsuseyourdatayoudohavecontroloverhowyouuseandstoreyourdataonyourmobiledevice.HerearesomesimplestepstomakeyourinformationmoresecurestartingwithyourhomeInternetconnection.KeepinmindusingtheInternetatcoffeeshopsstoresandothercommercialplaceshasrisksandwhilethereisnofoolproofwaytobeonehundredpercentsecuretherearewaystominimizeyourrisk.HowYourHomeConnectionWorksOnlyspecialcomputerscalledserverscanconnectdirectlytotheWorldWideWeb.YoupayTimeWarnerDishorotherInternetserviceprovidersISPforthisserviceusuallypermonth.ToconnecttoanISPyouneedamodemthatconnectsviacableorsatellite.ThemodemisconnectedtotheISPandthendirectlytoacomputer.Ifyouwanttousewirelessconnectionsandconnecttomorethanonedevicethemodemconnectstoarouterdirectly.Therouterwillsendtheconnectiontootherdevicessuchasphonestabletsandcomputers.MakingYourHomeConnectionMoreSecureYoucanchangesettingsonhardwareandsoftwaretoensurethattheinformationtravelssecurelyfromyourhometotheISP.Thisstartswiththeroutersthataretypicallypresettoreasonablysecuresettings.Tomakeyourroutermoresecureresearchinstructionsonyourparticularrouter.Thisisespeciallyimportantifyoubuyyourown.Thesoftwarethatallowsyoutosurfthewebiscalledabrowser.Mostbrowsersaresettoallowinformationaboutyouandyoursurfinghabitstobesharedeasily.Thisisonewaycompaniesmakemoney.AfewofthepopularandcommonbrowsersareGoogleChromeSafariInternetExplorerandFireFox.Eachbrowserhasprosandcons.SecuritySettingsTherearecommonsecuritysettingsinmostbrowsers.Whiletheyperformthesamefunctioneachbrowserwillhaveauniquewaytoimplementthesefunctions.CookiesWhenyousurftheInternetatrailcalledcookiesiscreatedusingthesitesyouvisit.CookiesarestoredonyourdevicesandPrivacyandSecurityintheDigitalAgeByJoanneFortunato 53MSFocusFall2014caneasilybeobtainedbyanyonewhohasaninterestinfindingoutwhatsitesyoufrequent.Allbrowsersallowyoutoturnoffcookiesordecideifyouwanttoacceptthemfromcertaintypesofsites.Usethemostrestrictivecookiesettingthatworksforyoursurfingneeds.AutoFillWhileitmightbemoreconvenienttohaveyourpersonaldataautomaticallyfilledintosavetimeitisnotagoodidea.Thisallowsthedatatobestoredonyourdeviceandmakesiteasiertosteal.HistoryAsyousurfthesitesyouvisitarestored.Youcanerasethehistorywhenyouaredonebrowsing.Inadditionfeaturessuchasprivatebrowsingturnoffhistorysothatitisnotstored.Itissafertouseprivatebrowsingbuttherewillbenorecordofyoursurfing.Ifyouwanttorevisitasitebookmarkingortaggingitwouldbeabetterwaytogobacktothesite.PluginsandExtensionsTheseprogramsaddfunctionality.Extensionsaddfunctionalitytoyourbrowser.Pluginsarelimitedtoasimpletaskusuallyembeddedinaparticularsite.ExamplesofpluginsareprogramsthatallowmoviestoplaysuchasFlashorQuickTime.Extensionsaremuchmorelikelytobehackedbecausetheyhavereadablecodethatcanbechanged.Withextensionsandpluginsyouhavetoweighusefulnessversusrisk.Erronthesideofcautionandonlyloadextensionsandpluginsfromcompaniesthatarereliable.Pop-upblockingWindowsthatappearoutofnowherearecalledpop-ups.Pop-upsoftencauseproblemssuchasvirusesandmalware.Pop-upblockersshouldbeturnedontopreventattacks.EmailAfewsimpleemailrulescanpreventahostofproblemsBecautiousofunsolicitedemailfromcompaniesrequestinginformation.Impostersmaydisguiseemailasthoughitiscomingfromareputablecompanyinordertogetyourinformation.Thisisknownasphishing.Ifyoureceiveanemailthatappearstobefromyourbankoranotherinstitutionwithwhichyouhaveanaccountrequestinginformationavoidusinglinkswithintheemail.Callthecompanyorgodirectlytotheirsecurewebsiteinstead.Donotopenmailunlessyourecognizethesender.Eventhenusecaution.Emailaddressbooksareoftenhackedandwhatlookslikeanemailfromsomeoneyouknowcanbespamorjunk.Ifavailableusethefeaturethatscansemailattachmentsforproblemsbeforeyouopenit.Emaillivesforever.Evenwhenyouthinkyoudeletedititisprobablystoredonaserversomewhere.Thinkbeforeyousend.EmailthatyouthinkisfreesuchasYahooandGmailhasadsandhiddenprograms.JoanneFortunatoBSMAisaretiredcomputertechnologyteacherinTroyN.Y.Shehasamastersdegreeineducationandhasbeenteachingtechnologytoteachersandstudentsfor30years.ShehaspublishedseveralarticlesandbooksoneducationalcomputertechnologyincludingseveralarticleswiththeInternationalSocietyforTechnologyinEducationISTE.ShewasdiagnosedwithMSin2006andusestechnologytoaidincopingwiththemanydifficultiesthatMScanpresent.Sheisexcitedtosharethisinformationwithothersthatdealwiththesameandmanyotherissuesonadailybasis. 54MSFocusFall2014MEEITSALLABOUTMotivatingEducatingEmpoweringMULTIPLESCLEROSISFOUNDATIONMEEITSALLABOUTMotivatingEducatingEmpoweringMULTIPLESCLEROSISFOUNDATIONMSFkickedoffafour-parteducationalseriesonAug.22inWarwickR.I.ThetitleoftheseriesisBuildingaStrongerMSCommunityWhatDoIDoNowThespeakerwasCherieC.BinnsRNBSMSCNwhoisaMS-certifiednursepracticingindependentlyinsouthernNewEngland.InthispresentationshediscussedHowtomakethemostofyourofficevisitWhotocontactwhenyouneedhelpgettingyourmedicationsHowtochooseaninsuranceplanthatcoversyourspecifichealthcareneedsHowtofindneededresourcesandHowandwhentoconnectwiththeMScommunitytogetthemostoutofyourcareandthequalityoflife.Shewentin-depthabouttheimportanceofwritingyourcongressionalrepresentativeregardinganydifficultiesinobtainingmedicationsandtreatments.ShealsoofferedideasastowhomtospeakwithsuchasyourdoctornurseinyourdoctorsofficethecustomerserviceagentatyourhealthinsurancecompanyoranMSserviceorganization.CheriealsodiscussedhealthylifestylechangessuchaseatingwellregularexercisehelpingotherstakingupahobbyorskilltendingtoonesspiritandbeingpartofthestrongerMScommunity.TotopofftheluncheonprogramCheriehadafreeraffleandoneluckywinnerwenthomewithacoolingvest.LookoutChicagoSeattleandSanJuanPuertoRico.Yourethenextcitiesinthisseriessokeepaneyeoutforyourinvitationinthemail.SupportforthisprogramwasprovidedthroughagrantfromNovartis. 55MSFocusFall2014Ride4MEEARidetoMotivateEducateandEmpowerThoseWithMultipleSclerosisOnAug.1theRide4MEEteamincludingbicyclistsKyleSchneiderandEricOlsonalongwithfriendDaveHallamwhotrailedbehindthebikersintheteamsSupportRVvanbeganathree-daycyclingjourneytobringawarenesstoMSandsupporttheMSF.BeginninginMassachusettstheybikedmorethan400milesaveraging130milesperdayandventuredthroughsevenstates.Despiteconstructiondetourspouringrainsteephillsandabitofsightseeingincludingpayingtheirrespectsatthe911MemorialinNewYorkCitytheintrepidridersfinishedtheirjourneyat430p.m.onAug.3inWashingtonD.C.wheretheyweregreetedbyfriendsandfamily.WhatpromptedtheideaforthiscourageousjourneyIn1989EricswifeTracyOlsonwasdiagnosedwithMS.KylesadmirationforTracysstrengthresilienceanddedicationtotheMScauseiswhatinspiredhimtoorganizethisgivingcampaignwhichcollected5700forMSFprogramsandspecialgrants.ThankYoutoKyleEricDaveTracyandalltheirsupporterswhowholeheartedlyembracedthisopportunitytopayitforward.EventCoordinatorandriderKyleSchneidersaysthathelearnedalotabouthimselfandthoseaffectedbyMSduringthesixmonthsoftrainingpriortotheride.WhenpushcomestoshoveIcanchoosetostopridingIcanchoosetostoptrainingandIcanchoosetostopsufferingthosewithMSdonthavethatchoice.MylegsfeelfinenowandIamreadytoridealreadybutIwillneverforgetthesacrificesthatEricswifeTracymakesonadailybasisnorwillIevertakeforgrantedmyabilitytodowhatIlovethemostandthatisjustridemybikefortheloveofriding.VolunteerSpecialEvents2014markedthe10thanniversaryoftheFRIENDSMSWalkinTaylorMich.andorganizerSamaraWolffeltcompelledtoacknowledgethecontributorswhohavesupportedthisfundraiseryearafteryear.SpecialrecognitionawardswerepresentedtothefollowingsponsorstheByHildyBergerEricOlsonandKyleSchneider 56MSFocusFall2014HenryFordWyandotteMedicalStaffFundandKevinSpragueMDMichaelNeshewatMDoftheSouthgateMedicalGroupHappyPawsPetServiceandTheFurAngelsPetTherapyGroupandtheCityofTaylor.Manyorganizationsfromthebusinesscommunityprovidedraffleitemsandoffereddeepdiscountstokeepeventcoststoaminimum.TheseloyaldonorsincludedPanettasLawnandGardenEmbroideredImagesMICustomSignsTheSignShopandDaveLipkaofCKJEntertainment.OneofthehighlightsthisyearwasaspecialtributetoSamarafromStateRepresentativeDougGeissandMichiganStateSenatorHoon-YungHopgoodafaithfulsupporterfortenyears.ThisyearsJune14eventbroughtin4182fortheFoundationandMSFextendsitssincerestappreciationtoSamaraherhusbandDanWolftheirnetworkofdevotedfamilyandfriendsanddedicatedvolunteersJeffMichelleBrittanyandJJSherryJackieBrownCaitlinNicholsonandDritaManajwhoorganizesthepre-WalkJarDrive.ThankyoutoBrittanyRussowhogenerouslydecidedtoforegograduationgiftsinlieuofdonationstotheMSFforherhighschoolgraduationparty.HeldonJune15atherhomeinNewtonN.J.guestsdecoratedawhitetableclothwithpaintedhandprintsandofferedcashdonationstotaling200tohelpthosewithMS.BrittanysmomKathleenwhowasdiagnosedwithMSin2012contactedtheMSFtoletusknowadonationwasforthcomingandBrittanyscharitablegestureevenpiquedtheinterestoftheNewJerseyHeraldwhichranastoryaboutherfundraiser.RumbleintheAncientCitySummerSlamSt.AugustineFla.LookwhosfightingforpeoplewithMSliterallyMichaelAllenvolunteerpromoterandall-aroundguyforMixedMartialArtsrisingstarLorenzoHuntsuggestedthattheteamthrowtheirweightbehindadeservingMScharitytheMultipleSclerosisFoundation.ThepartnershipsfirstforaycameonJune28whenTeamLorenzohostedanMSinformationtableandsignedautographsatKetterlinusGymnasiumduringSt.AugustinesMMASummerSlam.KeepaneyeontheMSFsFacebookpageformorestrong-armedMSoutreachinthefutureMSFEventsBocasGotTalentBocaRatonFla.Aug.4wasntyourtypicalsummerbluesMondayfortheMSF.AspartoftheBocaChamberFestivalDaystheMultipleSclerosisFoundationandsponsorPlumProductionshostedBocasGotTalentattheDublinerIrishPubinMiznerPark. 57MSFocusFall2014HildyBergeristheMSFsFundDevelopmentCoordinator.IfyouareinterestedinplanningafundraisingeventorwouldlikemoreinformationcontacttheMSFFundDevelopmentDepartmentat800-225-6495orsendanemailtohildymsfocus.org.InasearchtofindBocaRatonsmosttalentedmorethan100peoplegatheredtowatchsingersmusiciansandcomediansbattleitout.Fourteen-year-oldfiddlemarvelMaggieBaughandNBCsTheVoicebreakoutstarMoniqueAbbadienotonlyperformedforthecrowdbutalsojudgedcontestantsalongwiththeBocaFestivalDaysChairJonSahn.AfterallthevotesweretalliedthirdplacewenttoCindyOrbachNimhausersecondplacetoElvisimpersonatorSteveGershonandbothDonCapiandBenMellerofKRUSHtiedforfirstplacehonorsbeingcrownedBocasMostTalentedbyourspecialjudges.TheeventwasanoverwhelmingsuccesswithproceedsfromthenightsactivitiessupportingMSFprogramsandservices.SpecialthankstoourjudgesMoniqueMaggieandJonoursponsorPlumProductionsDublinerIrishPubTheBocaRatonTribunePalmBeachBroadcasting103.1WIRKSunny107.997.9WRMFX102SouthFloridaradiopersonalityandthisyearsemceeLoriMcQuestiona.k.a.Two-StoryLoriandallthecontestantsandattendeesformakingthisnightsomuchfunLtoRWinnersCindyOrbachNimhauserSteveGersonBenMellerandDonCapiLtoRMoniqueAbbadieBenMellerandMaggieBaughStayTunedforUpcomingEventsSavetheDateOct.162014TheMSFwillbehostingaGatheringPartyatAlpineJaguarinFortLauderdaleFla.ComejointhefunandhelpuscelebrateourupcomingHatsOffgala.AttendeesareencouragedtobringauctionitemstobenefittheFoundation.Comenetworkwithothersasyouenjoyabevyofrefreshmentsandappetizers.SavetheDateDec.62014TheMSFisproudtopresentourHatsOffgalatohonorDanielKantorMDwiththisyearsLeadershipinCareAward.Dr.KantorhasbeenahugesupporteroftheMultipleSclerosisFoundationandatirelessadvocatefortheMScause.HelpustipourhatstohimforhiscommitmentanddedicationtotheMScommunity.FormoreinformationabouttheseeventscontactNathalieSloaneat954-776-6805ornsloanemsfocus.orgMediaInquiriesAdrienneMazzoneTransMediaGroupat561-750-9800 MSFocusFall201458TheDumbestThingsSmartPeopleSay...ToFolksWithMSByDeeKitePhDAuthorDeeKitePhDwasa29-year-oldgraduatestudentwhensheexperiencedherfirstMSsymptomnumbnessonherleftside.AftersevenyearsmultiplemisdiagnosesaboutoffatigueandopticneuritisherphysicianfinallyconnectedthedotstoMS.Howeverbeingdiagnoseddidnotalleviatethepanicandconfusionshefelt.Insteadofsupportshewasoftenmetwithunwantedpeptalksorsuggestionsforoff-the-gridMScuresbythosewhosimplydidnotgetit.WrittenforthoselivingwithMStheirfamilyandfriendsTheDumbestThingsSmartPeopleSayToFolksWithMSprovidesanecdotalstoriesfirsthandexperiencesandadvicethatanswersthequestionHasanyonesaidsomethingtoyouthatdidnthelporevenmadeyoufeelworseThebooknotonlyaimstohelpreaderssympathizewiththechallengesandstrugglesoflivingwithMSbutalsotoempathizeandbemindfulofthedeliveryoftheirwordsevenifspokenwithgoodintent.Attemptingtobuildacommunitythroughattentivelisteningunderstandingandlearningthishumorousandinsightfulbookwillhelpotherslendalisteningearandrespondinanappropriatemannerwhileencouragingapositiveattitude.MSMadnessAGiggleMoreCryLessStoryofMultipleSclerosisByYvonnedeSousaRepletewithwittyreparteeandwritteninaninformaltoneMSMadnessAGiggleMoreCryLessStoryfollowsauthorYvonnedeSousaasshecopeswithbeingnewly-diagnosedwithrelapsing-remittingmultiplesclerosis.DedicatedtoherdearfriendsespeciallythoselivingwithmultiplesclerosisYvonnelearnedearlyonthatifshedidntmaintainasenseofoptimismshewouldnotbeabletotakefulladvantageofherlife.Thestoryfollowsherthroughoutthefirstyearofdiagnosisasshetriestocombatamixtureof MSFocusFall201459ToborrowthisandothertitlescalltheMSFLendingLibraryat888-MSFocus673-6287orvisitwww.msfocus.org.ClickonLendingLibraryundertheProgramsandActivitiesheading.emotionsincludingfrustrationsadnessandangst.ThroughaseriesofpersonalencounterswithprimarycaredoctorsandfunnyquipsastoldbyfriendsandfamilymembersYvonnecapturesthepitfallsofthediseaseandhowitaffectseverydaylife.ShealsoshareshelpfultipstoassistothersinadjustingtheirmindsetastheynavigatealongtheirMSjourney.Yvonnesmessageisthatitisokaytocrytofeeloverwhelmedandtofeelupset.Howeverthetaleexplainswhyitisparamounttoyourhealthtonotletthenegativeaffectyourmovingforward.AsseenmultipletimesthroughoutthebookYvonnesmottomyMSisnotyourMSyourMSisweird.hashelpedhernotonlypokefunatherselfinless-than-amusingsituationsbutalsothinkpositivelyandletlaughterguideherresponsestothedreadedMonSter.UltimatelythebookteachesyoutotakecontrolofyourMSnotletittakecontrolofyou.LIGHTWEIGHTDISCREETCOMFORTABLEPOLARProducts1.800.763.8423www.polarproducts.comPolarProductsPolarProductsFashionablyCoolPolarProductsisaleadingworldwidemanufacturerofbodycoolingsystemsforMSandaproudsupplierfortheMSFCoolingProgramPolarsFashionCoolingVestsforMenandWomenareavailableinKhakiorBlackinsizesSmall-XXXLwithyourchoiceofKoolMaxPacksorCool58Packs.Decidewhichisbestforyouatwww.polarproducts.com.Iliveinthedesert.AnyonewithMScanrelatethateachsummermonthgetsmoredifficulttomanage.SoIfinallybrokedownanddecidedtogetaPolarfashioncoolingvest...BoyamIgladIdidIwaspleasantlysurprisedhowdiscreetthecoolinginsertswereandhowmuchbetterIfeltafterward.Trustme-itwontcrampyourstyleDontputitoff.Youllloveit.-TerriinCAsince1984 60MSFocusFall2014Theever-changinglandscapeoffederalregulationsmedicaltechnologyandinsurancecoveragecanmakeonesheadspin.Thiscolumnspotlightsgovernmentresourcesavailabletoqualifyingpeoplewhohavemultiplesclerosisandotherchronicillnesses.Disability.govAOne-ClickResourceLetshearitforthe21stcenturyInformationhasneverbeeneasiertoaccessandwiththehelpofonlineapplicationsthosehomeboundandthoselivingwithdisabilitiescanavoidtravelingtostateandfederalofficesandstandinginlonglines.Disability.govprovidesone-stopshoppingforinformationongovernmentprogramsforthosewithdisabilities.Disability.govisafederalgovernmentwebsitethatprovidescomprehensiveinformationaboutdisability-relatedprogramsservicespolicieslawsandregulations.Thesitelinkstothousandsofresourcesfrommanydifferentfederalgovernmentagenciesstateandlocalgovernmentsandnonprofitorganizationsacrossthecountry.Inadditiontoprovidingeasyaccesstoinformationthewebsiteallowsuserstoaddnewresourcesdailyto10mainsubjectareasBenefitsCivilRightsCommunityLifeEducationEmergencyPreparednessEmploymentHealthHousingTechnologyandTransportation.YoullfindinformationontopicssuchasSocialSecuritybenefitsjobaccommodationsforemployeeswithdisabilitiesaccessiblehousingandorganizationsinyourstatethatcanhelpyoufindajoborliveindependently.Disability.govisaninformationandreferralwebsite.Whenyouselectaresourceyouarelinkedtotheauthorizedwebsiteofthattopic.ForexampleifsearchingforinformationontheMedicareInsuranceprogramyouwillbelinkedtoanewpageandtheapplication.InformationonvolunteeringsavingmoneyandadvocatingforyourselfcanallbefoundundertheCommunityLifesectionofthewebsite.NeedtofileadiscriminationlawsuitYouwillfindalltheadviceandtoolsyouneedtogetstarted.IfyouareinterestedinretirementtheRetirementEstimatorgivesestimatesbasedonyouractualSocialSecurityearningsrecord.Withoneclicktheuserisprovidedwithabroadrangeofresourcesabouttransportationorhousing-relatedissues.LookforthelinktoCertainDevelopmentsHousingVouchersforPeoplewithDisabilities.OrareyouthinkingofcollegeThisveryhelpfulwebsitecanofferguidanceandlinksforinformationaboutscholarshipsandfinancialaid.Disability.govcutsthroughbureaucraticredtapeandisapracticaltoolforgettingwhatyouwantandfindingwhatyouneednow. 62MSFocusFall2014OnceUponaLonelyRoadByRichardW.BoughtonRecentlyIreceivedanemailfromamanwholivesnearthesmalltownofSandyOre.about20mileseastofmyhometownofPortlandwhereIlivedforabout55years.ThemanwhoidentifiedhimselfasGeorgePortersaidhehadrecentlycomeuponacomputerthumbdrivelyingatthesideofanall-but-unusedroadbehindtheplantnurseryheownsinSandy.Thinkingatfirstthatitmaybehisownhetookthedrivehomeandpluggeditintohislaptop.Thoughthisrevealedtheexistenceofsomefilesbothphotosandtexthewasunabletoopenthefilesonfirstattempt.IthoughtaboutjustgivingupandtossingthethingGeorgewrotebutsomethingtoldmetokeeptrying.Aftertinkeringaroundwithseveralprogramsandoptionshewasabletoopenoneofthetextfilesonthedrive.WhathefoundwastheentiretextofabookIhadwrittenaboutfouryearsago.IhavenorecollectionofputtingthebookonanystoragedeviceotherthantheoneIhaveinmyownpossessiontuckedsecurelyintothepocketofmylaptopcase.SuchwasmyconvictionthatIcheckedthecasejusttobesureandsureenoughtherewasthethumbdriveandthereonthecopyofthebook.Thebookthoughthreeyearswithanagenthasnotbeenpublishedandsodoesnotforallpracticalpurposesexistatallotherthaninmyhandsandinthehandsoftheagent.AndnowinthehandsofGeorgePorteraswell.SohowintheworldcouldmybookhavegottenontoanotherthumbdriveandhowcouldthatthumbdrivehaveendeduponabackroadinSandyOre.IhavenotbeeninOregonforalmosttwoyears.WhatthenhasbeenthecareerofthismysteriousthumbdriveDiditlieonthatroadtheentiretimeorhaveitstravelsbeenwiderthanIpreviouslyimaginedOristhissomekindofscamThatwasmyinitialsuspiciongiventhatInternetscamsaresocommonthesedays.WeveallreceivedthemfromtheunknownrecipientofmillionswhodesiresforsomereasontosharehiswealthtothebeautifulwomanphotoincludedwholivesinAfricahascomeacrossyourprofilesomewhereonlineandfeelsthatyouandshewillmakeaperfectpairifonlyyouwillsendhersomemoneyforaplaneticket.WhatwasthescaminthecaseathandIcouldnotimaginebutofcoursethatsthepoint.Agoodscamreliesonthehumaninclinationtotrust MSFocusFall201463tobecurioustobelieveandtobond.IrepliedtoGeorgesmailguardedyetcaptivatedbycuriosity.AndIfoundthatMr.Porterwantednothingatall.Heofferedonlythathehadseenoneofhisdriverswalkingonthebackroadwherethedrivehadbeenfoundandsaidthathewoulddohisbesttocontactthismantodeterminewhetheritmighthavebeenhewhodroppedthedrive.HereisthekickerThebookthatIwrotewhichsomehowgotontoathumbdrivewhichitselfsomehowendeduponabackroadinSandyOre.whereitwasfoundtwoyearsdownthepathoftimebyamannamedGeorgePorteristhestoryofmylifeafterbeingdiagnosedwithmultiplesclerosisinthespringof2007.Themanwhofoundthedrivetookithomepluggeditintohislaptopandlaboredatsomelengthtodiscoverwhatwasonithadrecentlythatdaylosthisfriendofalmost40yearstocomplicationsofmultiplesclerosis.Hereiswhereaflukebecomesatwistoffate.ThereasonthatGeorgewaswritingmeatallwastosharehowmeaningfulmybookhadbeentohimandhowcomfortingandinformativemywordshadbeenaboutthediseasethattookhisfriendslife.Hehadwritteninshorttothankmeandasithappenstoencouragemeaswell.Onewritesultimatelytoconnecttoshare.Onewritesfortheearofaninvisiblereaderwithwhomhehopestofindafellowshipofliving.ItmayseemsadinsomewaythatthisbookoverwhichIhadexpendedmyhearthadendedupinthegravelonalonelyroad-side.Andyetthemiraclethatbroughtittothehandsofthissinglereaderisencouragementbeyondthecommonpaleoflifeandagiftofrarestmostrewardingamazement.T-ShirtsSweatshirtsBearsCoolingItemsJewelryOrangeRibbonAwarenessItemsCarMagnetsandsomuchmore.Seeouronlinecatalogatwww.themsshoppe.com920238-5138infothemsshoppe.comAportionofallproceedsgoestotheMSFAnativeand55-yearresidentofPortlandOre.RichardwasdiagnosedwithMSin2007andmovedtoBaliIndonesiain2010wherehedoesfreelanceeditingandmaintainsablogwww.everyonehereisjimdandy.blogspot.comonMSandlifeinBali. MSFocusFall201464NewResearchTechniqueHastensDiscoveryofPotentialTherapiesEightnewdrugsthatmaybebeneficialinthetreatmentofMShavebeenidentifiedbyresearchersatUCSanFrancisco.Examiningthecellulareffectsof1000chemicalcompoundsscientistsbelievethediscoverymayaffecttreatmentofthetissuelesionscausedbyMS.OfthecompoundstheantihistamineClemastinewasthemosteffectiveofall.Withinthemyelinationprocessmyeliniswrappedbyspecializedcellscalledoligodendrocytes.Tostudythelayersofwrappingindividuallyresearchersdesignedanewsystembasedonfabricatedconicalmicropillars.Scientistswereabletoanalyzethecolorofthecellstodetermineiftheoligodendrocyteprecursorcellshaddifferentiatedintooligodendrocytesandtocalculatehowthoroughlyitwrappedthemicropillars.EightcompoundssuccessfullypromptedOPCstodifferentiateintooligodendrocytesandrobustlywrappedthemicropillarswithlayersofmyelin.AllofthecompoundsareapprovedbytheFDAandusedtotreatotherdiseases.ScientistsrecommendthatindividualswithMSdonottryanyofthecompoundsuntilfurtherclinicaltrialsestablishtheirsafetyandeffectivenessinthetreatmentofthedisease.Dr.ThrowerDr.Chansstudyisexcitingontwodifferentlevels.TheabilitytorapidlyscreenthousandsofpotentialMStherapiesmayleadtomoreeffectiveoptions.ThroughthisprocessDr.Channotesthateightcompoundswereidentifiedthatmayhelppromoteremyelination.OneofthosecompoundsClemastineisanantihistaminecurrentlysoldasTavist.IwouldnotsuggestpeoplewithMSrunoutandstarttakingthisproductinhopesofreversingsymptomsuntilwegetalittlemoreinformation.LinkBetweenVitaminDLevelsandOpticNeuritisSeverityAstudyofchildrenandadultswithMSrevealedthatindividualswithhighervitaminDlevelsmayexperiencelesssevereattacksofacuteopticneuritis.Researchersstudiedthreegroupsofpatients.Thefirstwascomposedof253TheMSNewscolumnincludesanalysisfromMSFSeniorMedicalAdvisorBenThrowerMD.DrawingfromthetopMSnewsstoriesofthequarterDr.ThrowerwillassesswhatthenewsmeanstoyouthepersonwithMS.MSNEWSandWhatItMeanstoYou 65MSFocusFall2014adultAONpatientsandthesecondwascomposedof38pediatricAONpatientsbothgroupshadAONastheirinitialpresentingsymptomforMS.Thethirdgroupwascomposedof101individualswithAONwhodidnotexperienceAONastheirinitialsymptom.TheauthorsbelievevitaminDplaysanimportantroleinAONattackseveritybutsaidthatmorestudiesarewarranted.ThisstudywaspublishedinthejournalNeurology.Dr.ThrowerResearchshowsthatlowvitaminDlevelsearlyinlifemaycorrelatewithahigherriskofMSlaterinlife.SeveraltrialshaveshownareducedriskofrelapsesandnewMRIlesionsasvitaminDlevelsarenormalized.ThisstudylookedattheseverityofandrecoveryfromopticneuritisandhowthosecorrelatewithvitaminDlevels.TheseverityofopticneuritisasmeasuredbyvisualacuitywasreducedinpeoplewithhighervitaminDlevels.InadditionrecoveryfromtheiropticneuritiswasnotaffectedbyvitaminDlevels.ParasiticWormsMayBeKeytoMSTreatmentsPeptidesinparasiticwormsmayholdthekeytotreatingautoimmunediseasesincludingmultiplesclerosis.AMonashUniversityresearchteamidentifiedapeptidenamedAcK1inthehookwormAncylostomacaniniumthatinhibitstheimmunesystembyblockingapotassiumchannel.ResearchinvolvingAcK1couldresultinanewdrugthatrelievesthesymptomsofautoimmunediseasessuchasMS.ThestudywaspublishedintheFASEBJournal.Dr.ThrowerIthaslongbeennotedthatMSismorecommonasonegetsfurtherfromtheequator.Oneexplanationisthatthetypesofinfectionsweareexposedtomaysteerourimmunesystemindifferentdirections.Asonegetsclosertotheequatorparasiticinfectionsbecomemorecommon.Viralinfectionspredominateasonemovestomoretemperateclimates.ThepartoftheimmunesystemthathandlesparasitesislessactiveinMSwhilethepartoftheimmunesystemthatdealswithvirusesismoreactive.ResearchershavelookedatgivingpeopleinactivatedparasiteeggstosimulateaparasiticinfectionandmodulatetheimmunesysteminMS.Thisnewresearchmayletusgetthatsamebenefitwithouttheuncomfortablethoughtofeatingwormeggs.FDAApprovesPlegridyforMSPatientsBiogenIdecsPlegridyTMreceivedFDAapprovalasatreatmentforrelapsingformsofmultiplesclerosis.InaclinicaltrialPlegridywasshowntosignificantlyreduceimportantclinicalandimagingmeasuresincludingslowingtheprogressionofdisabilityanddecreasingthenumberofrelapsesandbrainlesions.FormoreinformationonPlegridyincludingprescribinginformationandmedicationguidegotoPLEGRIDY.com.Dr.ThrowerNewoptionsformanagingMSarealwayswelcome.InthepastfewyearswehaveseenthreeoralmedicationsapprovedforrelapsingformsofMS.Inearly2014anewformofCopaxoneallowingforfewerinjectionswasapproved.Plegridyisanewinterferonproduct.Plegridyisgivenbysubcutaneousinjectioneverytwoweeks. 66MSFocusFall2014Q.Q.HowdoesmultiplesclerosiscausemigrainesA.A.FormostpeoplewhohavebothMSandmigrainesthemigrainestypicallycomefirstandarenotcausedbytheMSitself.SomepeoplehoweverhadnohistoryofmigrainespriortotheirfirstMSsymptoms.InfactinsomecasesabadheadacheledtothefirstbrainMRIwhicheventuallyledtoanMSdiagnosis.SometimeshoweveramigrainemaybeasymptomofMSorevenasignofanMSrelapse.MSisgenerallythoughttobeanauto-immunediseasewithaninflammatoryattackonthemyelincoveringthenervesandtheaxonsthemselveswithinthecentralnervoussystem.MigrainesarebelievedtobetriggeredinapartoftheCNScalledthebrainstem.ThebrainstemisoneofthethreemostcommonsitesforthedemyelinationseeninMS.ThismeansthatanMSlesionintheperiaqueductalgreymattermaycauseamigraine.MSlesionsintheopticnervecommonlyknownasopticneuritismaybeverypainfulandcanmakesomeonefeelliketheyarehavingtheexplosiveeyepainseeninsomemigraines.InrealitythesearingpainiscausedbytheswellingoftheopticnervethenervethattransmitssignalsfromtheeyefromanMSlesion.PeoplewithMSmayalsohavemigrainesduetovariousmedicationstheyaretakingincludingdisease-modifyingmedicationssuchasbetainterferonsandfingolimod.WhilepeoplewithoutamigrainehistorywhotakebetainterferonsmaydevelopheadachesasapotentialsideeffectitseemsthatonlypeoplewithapersonalorfamilyhistoryofmigrainesactuallydevelopmigrainestriggeredbytheMSmedications.SojustasmanypeoplewithmigraineshaveafoodorweathertriggerfortheirmigrainesMSmedicationsmaysometimesbetriggersformigrainesaswell.Q.Q.HowisaphasiaorthelossofwordslinkedtomultiplesclerosisA.A.AphasiaorthelossofwordsuntilrecentlywasnotconsideredaclinicalmanifestationofMSbecauseMSprimarilyaffectsthewhitematterofthebrainandspinalcordwhileaphasiaistypicallyassociatedwithdiseasesofthegreymatter.HoweverarecentmulticenterstudyThisQuestionsandAnswerscolumnfeaturesquestionsthathavebeenansweredbytheMSFforSharecareacompanydedicatedtoprovidingthebesthealthandwellnessinformationonline.TheMSFhaspartneredwithSharecaretohelpspreadvitalinformationaboutthediseasetotheglobalMScommunity.VisittheMSFspageonSharecare.comathttpwww.sharecare.comgroupmultiple-sclerosis-foundation. Fall2014MSFocus67investigatingtheprevalenceofaphasiainMSfoundthatnearly40percentofindividualswithMSdemonstratemarkedlyreducedword-findingskills.AphasicdisordersmaybeobservedintwodifferentsituationsinMS.Themostcommonsituationisexperiencingdifficultygeneratingthenamesofpeopleplacesandthingsoverthediseasecoursewhilethesecondsituationisexperiencingacuteaphasiaduringorfollowinganexacerbation.Q.Q.WhattestsshouldIhavedonebeforeItakeGilenyaformyMSA.A.TheFoodandDrugAdministrationlabelforGilenyaindicatesthatallpeoplewithMSbeginningtreatmentwithGilenyashouldhaveanelectrocardiogramECGpriortothefirstdoseofthemedicineandafterthesix-hourfirst-doseobservationperiod.Hourlymeasurementsofbloodpressureandheartratearealsoadvised.GilenyasmanufacturerNovartisrecommendsthatpeoplewithcertainpre-existingcardiacconditionsorthosetakingcertainmedicationsatthesametimeshouldhaveovernightmonitoringfollowingadministrationofthefirstdoseofmedication.ItmaybesuggestedthatsomepeoplebeevaluatedbyaspecialistpriortostartingGilenya.ExperiencewiththeuseofGilenyainsuchpeoplewaslimitedinthepivotalclinicaltrialsaccordingtoNovartis.PeoplewhohavediscontinuedGilenyaandwanttogobackonthemedicationshouldundergotherecommendedmonitoringupontreatmentreinitiation.Nooneshouldmakeanychangestotheirmedicationswithoutconsultingtheirdoctor.TheMultipleSclerosisFoundationsSeniorMedicalAdvisorBenThrowerMDsaysInjectabletherapiesforMShavebeenofgreatvalueinslowingdisabilityanddecreasingrelapsesinpeoplewithMS.Unfortunatelymanypeoplearestrugglingwithcontinuingtheirshotsyearafteryear.GilenyawaswelcomedasthefirstoraltherapyforMSin2010.TheconvenienceandeffectivenessofGilenyaneedtobebalancedwithconcernsaboutsafety.BecauseofahandfulofpeoplewithMSexperiencingseriouseventswhileonGilenyaincludingdeaththemanufacturerhasupdatedtheirlabelgivingmoreguidancetohealthcareprovidersworkingwiththedrug.Questionscanbealsobeemailedtosupportmsfocus.orgormailedtoMSFocus6520NorthAndrewsAvenueFortLauderdaleFL33309.VisitOurWebsitetwww.HeatReliefDepot.comReceivea10DiscountUseCouponCodeMSFWarmingVestsHandFootWarmersWarmingCushionsHerbalWrapsHeatPacksMoreCoolingVestsNeckWristCoolersFansSunscreensHatsCapsVisorsMistingProductsMoreYourPlaceForPersonalCoolingWarminProductsHEATRELIEFDEPOTOrCallUsTollFree877-879-1450 NONPROFITORG.U.S.POSTAGEPAIDFT.LAUDERDALEFLPERMITNO.2698AreyoumovingPleasenotifyusofyourchangeofaddress.Call888-MSFOCUS673-6287orEmailsupportmsfocus.orgChangeServiceRequested6520NorthAndrewsAvenueFortLauderdaleFlorida33309-2132RAND-SCOTIncorporatedMakeanEasytransferwiththeEasyPivotTheEasyPivotPatientLiftisthepatientliftofchoice-EasyPivotEasyPivot401LindenCenterDriveFortCollinsCO80524800-467-7967970-484-7967inforandscot.com2012Rand-ScotInc.ManufacturersofEasyPivotLiftsBye-ByeDecubitiCushionsSaratogaFitnessProductsSpiritCycleFeelbetterforlifewithSpiritCyclewww.RandScot.comSaratogaSpirit690-