Newsletter

September2018

MessagefromSARDAA,CEO

DearFriend,

Septemberisanexcitingtimeforstartinganewschoolyear,thebeginningofFallandforSARDAAstrategizingingranderdetailhowtoreclassifyschizophreniaandshiftthetreatmentparadigmforpeoplewhoareaffectedbythemostseriousneuropsychiatricillnesses.

Wecontinuetofocusonourgoaltoimprovelivesaffectedbythemostserious

neuropsychiatricdiseases:

Wehavesentaletterto

DirectorRobertR.Redfield,MDU.S.CentersforDiseaseControlandPrevention1600CliftonRoadNEAtlanta,GA30329RequestingtheInclusionofSchizophreniainNationalNeurologicalConditionsSurveillanceSystem(NNCSS)

WeareworkingtocollaboratewithotherstakeholderorganizationstoworktogetheronhowwecanmakeREALchangesthatmatterthemost(HIPAA,IMDExclusion,AOT)tothosewhoarelivingwithpsychosisandanosognosia.

WeareofferingtheL.E.A.P.TraintheTrainerTrainingintheWashington,DCareaonFebruary7–9,2019.

Therearemanymoreitemsonouragenda.

Wewillhavesomeveryexcitingnewsinthecomingweeks!

Wecan’taccomplishallthesethingswithoutyourhelp!PleasedonateNOWsowecanworkforthemostseriouslyneuropsychiatricallyill.

Warmestregards,LindaStalters,MSN,APRN(ret)ChiefExecutiveOfficerSchizophreniaAndRelatedDisordersAllianceofAmerica

GraceLee,aSARDAAstaffmemberlivingwith

schizoaffectivedisorder,willbeparticipatinginTheWalkforMentalHealthAwareness--Houstontoraise

fundsforourmission.Supporther5KwalkHERE

MessagefromFFS,FamilyandFriends,

Coordinator

LEAP,isthesupportprogramofXavierAmador,PhDforfamiliesandfriendsofthosediagnosedwithneurologicalbraindisorders,andmorespecificallyofhelpregardingthosechallengedwithanosognosia,thelackofinsightintoone'sillness.Heauthoredthebook'IAmNotSick,IDon'tNeedHelp...HowtoHelpSomeonewith

MentalIllnessAcceptTreatment'.Thisprogram,basedontrustandrespect,maybenefitboththefamilies/friendsandtheonediagnosed,asitholdspromiseoffacilitatingpositivecommunicationsandinteractionsbetweentheparties.LreferstoLISTEN;EtoEMPATHIZE;AtoAGREE(Ialsothink'align')andPtoPARTNER.BylearningthebenefitofeachoftheseguidelineswemayseeanimprovementinthechallengesandfrustrationsweencounterfromBOTHperspectives.OnthispathasacarepartnerIamtunedtomuchincomingrelevantinformationthatuponhearingaradio

serviceannouncementreferringtoalearningdisabilitywhichsaid“whenweseetheirsidewecanbeontheirside”,Irelated.'LISTEN'thefirst,andpossiblymostimportantpartofLEAPremindsmeofaquotebyMarkNepo,thatbeing“Tolistenistoleanin,softly,withawillingnesstobechangedbywhatwehear”.ItisalsoexpressedinapoemwrittenyearsagobymembersattendingaRacineWIDCSconference.Itfollows:

“LISTEN”>”WhenIaskyoutolistentomeandyoustartgivingmeadvice,youhavenotdonewhatIasked.>WhenIaskyoutolistentomeandyoubegintotellmethatIshouldn'tfeelthatway,youaretramplingonmyfeeling.>WhenIaskyoutolistentomeandyoufeelyouhavetodosomethingtosolvemyproblem,youhavefailedme,strangeasthatmayseem.>Listen!AllthatIaskedwasthatyoulisten-nottalk,ordo-justhearme.>Adviceischeap.TwentycentswillgetyoubothDearAbbyandBillyGrahminthesamenewspaper.>AllIcandoisdoformyself.Iamnothelpless-maybediscouraged,butnothelpless.>WhenyoudosomethingformethatIcanandneedtodoformyself,youcontributetomyfearandinadequacy.>ButwhenyouacceptasasimplefactthatIdofeelwhatIfeel,nomatterhowirrational,thenIcanquittryingtoconvinceyou,andgetaboutthisbusinessofunderstandingwhatisbehindthisirrationalfeeling.>Whenthatisclear,theanswersareobvious,andIdon'tneedadvice.Irrationalfeelingsmakesensewhenweunderstandwhat'sbehindthem.>Perhapsthatiswhyprayerworks,sometimes,forsomepeople-becauseGodismute,andhedoesn'tgiveadviceortrytofixthings.Hejustlistens,andletsyouworkitoutforyourself.>So,pleaselistenandjusthearme.Ifyouwanttotalk,waitaminuteforyourturn-andI'lllistentoyou”.

LEAPisextensivelyavailableontheWebvia'LEAPXavierAmador'anditwilltakeyoutoTheLEAPInstitute,amongotherrelatedinfo.Itisaworthwhileinvestmentoftimeandinterest,andthebook,avaluablereferenceforyourlibrary.EventhoughIamawareofthisvaluableinformation,Istillhavemuchtolearn.

WithHeart,MaryRoss

TheFriendandFamily,FFSphonesupportgroupisonTuesdaysat7

pmET.GiventhetimezonedifferenceofthreehoursbetweenEastandWestcoastsitischallengingtomeeteveryone'sneeds,sowewouldliketoestablishingasecondgroupforthewestcoastcallers.Ifyou,oranyoneyouknow,wouldbesocommittedtostartingsuchagrouppleasecontactCEOLindaStaltersatlinda.stalters@sardaa.org....muchgratitude.

MessagefromSAStaffSupporter

SARDAANews

BySandyDimiterchik

HaveyoueverheardofRAISE?ItstandsforRecoveryAfteranInitialSchizophreniaEpisode.Itconsistsofresearchandpilotprojectsstartedin2008throughNationalInstituteofMentalHealth(NIMH)todeterminethebenefitsofcoordinatedspecialtycare(CSC)forpeoplewithfirstepisodepsychosis(FEP).Psychosisiswhenapersonbecomesdetachedfromreality,andcanincludehearingvoicesorseeingthings.CSCconsistsofgroupsofprofessionalswhoassistwithmedication,counseling,coachingforworkand/oreducationandpeersupportgroups.Theresearchshowedthatpeoplewereassistedthroughtheseprograms.

TherearenumerousCSCprogramsfoundthroughouttheUnitedStates.SARDAAiscurrentlydevelopingaspreadsheetofalltheFEPand/orEarlyInterventionofPsychosis(EIP)treatmentcenterssothatwecanprovidethisinformationasaresourceonoursardaa.orgwebsite.Rightnowthereareover180ofthesecenters.Thecentersservedifferentageranges,durationofpsychosis,andcountylocations.Thatwaythediagnosedindividualscanbehelpedandwillbeabletosetprofessionalgoals,dependingontheirownsituation,throughthetreatmentcenters.

Wealsostartedanewweeklyconferencecall,onSaturdaysat3PMEasternTime,calledAdolescentorEarlyAdultSAConferenceCallGroup.Wehopetoreachpeopleasearlyaspossiblewhoareexperiencingpsychosis.Toparticipate,call1-855-640-8271,andthenenterpasscode88286491#.Formoreinformationcall240-423-9432.

PersonalStoryofSAMembers

ScottIcamefromawell-to-dofamilyandwastrainedfromearlychildhoodtogrowupandbecomeaprofessionalpersonofsomesort.EverythingseemedtoindicateIwouldsucceedinthisendeavorastheyearspassed.Igotexcellentgradesinschoolandwasanexcellentathlete.Ididalltherightthings.

Somewherearoundtheageof17or18,InoticedthatIwasnotfeelingquiterightmentally.Thingswereconfusing,notmakinganysense,andIstartedlosingmysenseofconnectedness.Todealwiththis,Istarteddrinkingalcoholmoreandmore.Iwasverylonelyandunhappy.Myparentsandotherstriedtohelpme“snapoutofit,”buttonoavail.TheyearIenteredcollege,Idevelopedaseriousdrinkingproblemand,asIlearnedlater,crossedoverthelinefromsocialdrinkingtoalcoholism.MaybeIcrossedoverearlier,Idon’tknow.ButItellyou,beingarrestedfordrunkdrivingseveraltimesandspendingtimeinjailwasnofun.

Anyway,IgotsoberbyenteringtreatmentandAlcoholicsAnonymousaboutayearlater.Iwasexhilarated,althoughthingsstilldidn’tseemtobequiteright.Ifeltlost.About14monthsintomynewlife,Idecidedtofindsomemeaningtomyexistence.While

onatripwithanacquaintanceInoticedthingswerereallyquitedifferent.Theleavesinthewindseemedtobetalkingtome.Cloudformationshadspecialmeanings.Televisionandradioshowsweretalkingaboutmylife.AndIthoughtIcouldreadpeoples’mindsandcommunicatewiththemwithoutspeaking.IthoughtIhadfoundwhatgreatspiritualleaderstermed“beingspiritual.”ItrulythoughtIhadbeenblessedbyGodandthatIhadadirectpipelinetoHim.Ifelthappyandscaredatthesametime.Iwasinadifferentworld.

AboutoneweeklaterIdecidedtotravelouttotheWestCoasttoreallyfindmyself,giventhisnew-foundpower.Whiletraveling,itseemedlikeGod’svoiceenteredintomythoughtsandtoldmetodosomethingifIwantedrealpeaceandpowerinmylife.Thatbeing,torunmycarofftheroadandleavetheresttoHim.Ididthisonlytofindnopeace,butatotaledcarandatriptothestatementalhospital.

Sincethattime,I’vebeendealingwithadiseasecalledschizophrenia.Ithasbeenanuphillstruggle.Atthetimeofthiswriting,IbelieveI’vefoundawaytopullmyselfoutofpsychosisandfeelconnectedlikebeforethealcoholismandschizophrenia.TodayIfeelpeace,ownathrivingbusinessandhaveawonderfulrelationshipwithmywife.We’reintheprocessofplanningafamily.ThishasbeenaccomplishedbythephilosophyofSchizophreniaAlliance,AlcoholicsAnonymous,andafewspecialpeopleinmylife.

Wewelcomeyourmessage/artfromSAMembersforinclusioninthe

newsletter.Pleasesubmityourmessageto:info@sardaa.orgormailtoSARDAAPOBox941222,Houston,TX77094-8222forconsiderationfornextmonth'snewsletter.

YourstorymightbeincludedinaSARDAAnewsletterandmightbepublishedinafutureeditionoftheSABlueBook.

PhoneSupportGroups

SAConferenceCallGroupsOnlyforindividualsdiagnosed

Sundays-7pmEasternTimeMondays-4pmEasternTimeThursdays-7pmEasternTimeFridays-7pmEasternTime

Saturdays-1pmEasternTime

AdolescentorEarlyAdultSAConferenceCallGroupSaturdays-3pmEasternTime

SpiritofSAConferenceCallForSALeadersandPotentialLeaders

FirstWednesdayofEachMonth-7pmEasternTime

FamilyandFriendsSupportGroupNotforindividualsdiagnosedEveryTuesday-7pmEasternTime

Toll-freeCallsCall-ininformation(855)640-8271

EntryCode88286491#InternationalNumber(720)362-6499

FacebookSupportGroupOnlyforindividualsdiagnosedJOINTheFacebookGroupHere

ThisisaClosedgroup,asktobeadded.

“DisorganizedThinking”inPsychosisisLinkedtoBrainProcessingProbleminCerebellumBrain&BehaviorResearchFoundationJessicaBernard,Ph.D.August13,2018TexasA&MUniversityNewdatagleanedfromlearning-taskexperimentsandfMRIimagingofyoungadultsatclinicalhighriskforpsychosissupportthetheorythatproblemsinaparticularbraincircuitcontributetothedisorganizedthinkingseeninpatientswith

schizophrenia,accordingtoanewreportinthejournalNeuroImage:Clinical.

Theexperimentsallowedtheresearchteamtoexamineindetailacircuitinthecerebellum,atthebaseofthebrain,whilethecircuitwasactive.Theyfocusedonthecircuit’sroleinproducing“rules”andmodelsduringlearning–proceduresthatmakethinkingefficientandpowerful.TheresearchwasledbyJessicaBernard,Ph.D.ofTexasA&MUniversity,whoreceivedher2014YoungInvestigatorgrantasaDonaldandJanetBoardmanInvestigator;theseniorauthorwasVijayMittal,Ph.D.,a2017IndependentInvestigatoratNorthwesternUniversity.

READMORE

HigherNeutrophilCountsAssociatedWithBrainChangesinFirst-EpisodePsychosisMedscapeByReutersStaffAugust22,2018NEWYORK(ReutersHealth)-Higherperipheralneutrophilcountsareassociatedwithreducedgraymatter,enlargedventriclesandmoreseveresymptomatologyinpatientswithfirst-episodepsychosis(FEP),researchersreport.

Therehasbeenlittleinterestinthepossibleroleofperipheralimmunecellsinschizophrenia,becausetheblood-brainbarrier(BBB)restrictstheirentranceintothebrain.Undercertainconditions,however,theBBBmaybedisruptedandallowperipheralbloodcellstoenterthebrain.

Dr.ChristianStephan-OttofromParcSanitariSantJoandeDeu,inBarcelona,Spain,andcolleaguesinvestigateddifferencesinbrainvolumeandbloodcellcountsin137FEPpatientsand81healthycontrols.

READMORERiskofAgranulocytosisforPatientsonClozapineMayBeOverstated,StudyShowsAmericanPsychiatricAssociationNeutropeniaappearstobecommonbothinpatientswithschizophreniawhoaretakingclozapineaswellasthosewhohaveneverusedclozapine.Moreover,progressionfrommildneutropenia(1500-1900/mm3)toagranulocytosisappearstoberare,accordingtoareportinBMCPsychiatry.

Theresultssuggestthattheriskofagranulocytosisassociatedwithclozapinemaybeoverstated.Theyalsoappeartolendsupporttothe2015decisionbytheFoodandDrugAdministrationtolowertheneutrophilcountcutoffatwhichpatientsarerequiredtodiscontinueClozarilfrom1500/mm3to1000/mm3.

READMORESchizophreniaPatientsShowCognitiveImprovementsAfterSmokingCessationAmericanPsychiatricAssociationQuittingcigarettesmokingmayimproveprocessingspeedinpatientswithschizophrenia,accordingtoastudyinAJPinAdvance.Smokingishighlyprevalentamongpeoplewithschizophrenia,andthesefindingsaddanotherreasontoencouragesmokingcessationinthispopulation,notedstudyauthorsJentienVermeulen,M.D.,oftheAmsterdamInstituteforAddictionResearchandcolleagues.

Vermeulenandcolleaguesanalyzeddatafromastudythatincluded1,094patientswithnonaffectivepsychosis,1,047patientsiblings

withoutpsychosis,and579controlsubjects.Aspartofthisstudy,participantstookpartincognitivetestsatbaselineandthenthreeandsixyearsafterenrollment.Completecognitivedatawasavailablefor916patients,947siblings,and552controls.

READMORESurveyWouldyouconsidergeneticcounselingforyourpersonaland/orfamilyhistoryofneuropsychiatricormentalhealthproblems?

READMOREWhiteHousePressReleaseJuly25,2018Proclamation,AnniversaryoftheAmericanswithDisabilitiesAct,2018BythePresidentoftheUnitedStatesofAmericaREADMOREBehindBars,MentallyIllInmatesAreOftenPunishedForTheirSymptomsJuly10,2018DaveDaviesBysomeaccounts,nearlyhalfofAmerica'sincarceratedpopulationismentallyill—andjournalistAlisaRotharguesthatmostaren'tgettingthetreatmenttheyneed.RothhasvisitedjailsinNewYork,Chicago,LosAngelesandAtlantaandaruralwomen'sprisoninOklahomatoassesstheconditionofmentallyillprisoners.Shesayscorrectionalofficersareonthe"frontlines"ofmentalhealthtreatment—despitethefactthattheylackclinicaltraining."Mostof[thecorrectionalofficers]willtalkabouthowthisisnotwhattheysignedup,"Rothsays."Mostofthemhavenothadmuchtrainingindealingwithmentalillness—orthey'vehadnoneatall."READMORE

TreatmentAdvocacyCenterprovidescomparisonsbetweenAssistedOutpatientTreatmentversusMentalHealthCourts,here;homelessnessamongveteranswithseriousmentalillness,here;whethertheuseofanti-psychoticmedicationsandthepresenceofasecurityofficermaypreventneedingtoresorttoseclusionandrestraintininpatientpsychiatrichospitalsettings,here;andfascinatingnewresearchindicatingthatnitrates-chemicalsusedtocuremeatssuchasinbeefjerky,hotdogs,andotherprocessedmeats-maycontributetomania,here.

DonatetoSARDAA

BrainCampaign:TakethePledge

IwillchangemylanguagefromBehavioralorMentaldisordertoBraindisease.Iwilleducateotherstochangetheirlanguagefrommentalillnessestobrainillness.Iwillnotusestigmatizing,discriminatoryorderogatorylanguagerelatedtobraindiseases.Iwillencouragemypeers,familymembers,andcolleaguestoadvocatewhentheyseediscriminatorylanguageorpracticesinthemediaorinpublic.Iwilladvocatethatpeoplewithbraindiseaseshaveequalandcomprehensivehealthcare.Iwilltreatallpeoplewithbraindiseaseswithrespectandcompassion.

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