living well A Guide to MAnAGinG Multiple ScleroSiS for pAtientS And fAMilieS

MSfeaturing teri Garr

DVDInside

MSliving well A Guide to MAnAGinG Multiple ScleroSiS for pAtientS And fAMilieS

Copyright 2010

American Academy of Neurology

All Rights Reserved

No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying or recording, or by any information storage and retrieval system, without the written permission of the publisher, except when permitted by law.

Manufactured in the United States of America

Contents

Introduction................................................................................... 4

WhyMe?....................................................................................... 7

signsofMs................................................................................... 9

HowIsMsDiagnosed?.............................................................. 11

FormsofMs............................................................................... 12

HowIsMstreated?.................................................................... 15

Physicaltherapy......................................................................... 17

treatingotherMssymptoms..................................................... 18

AlternativeandComplementarytherapies................................. 19

LifewithMs.............................................................................. 20

thingstoKeepinMind............................................................... 24

Resources................................................................................... 25

DISCLAIMER: This guidebook and DVD program is intended for informational purposes only. This book was produced by Conrad Productions and Alan Weiss Productions with support from and/or in collaboration with the American Academy of Neurology (AAN), Novartis Pharmaceuticals Corporation, the guidebook author (Stephen Braun), the DVD scriptwriter (Deborah Gobble), and the experts who participated in this program (Dr. Fred D. Lublin and Dr. Aaron E. Miller). The sponsor, producers, writers, and collaborator make no representations or warranties, express or implied, regarding the accuracy or completeness of the information provided herein.

No one should rely upon this information as the basis for treatment decisions. Anyone requiring medical or other health care should consult a medical or health care professional. Any actions based on the information provided are entirely the responsibility of the user and of any medical or other health care professionals who are involved in such actions.

4 5

IntRoDuCtIon

thefirstreactionmanypeoplehavewhentheylearnthatthey

oralovedonehasmultiplesclerosis(Ms)is:“What’sthat?”

Inpart,that’sbecausetheword“sclerosis”isunfamiliar.

Sclerosismeansscar.somultiple sclerosismeansmany scars.

ButthescarsofMsareinvisible.Inthisdisease,thescarsform

inthenervoussystem.

AnotherreasonfewpeopleknowaboutMsbeforetheyora

lovedoneisdiagnosedisthatitisnotverycommon.even

thoughabout400,000AmericanshaveMs,androughly200

peopleintheusarediagnosedwithMseveryweek,most

peopledon’tknowsomebodywhohasit.Asyouwilllearnin

thisbookletandprogram,theMscommunityislargeand

verysupportive.Butatfirstitcanfeelstrangetobetold

youhaveMs.

thisbookletandDVDwillexplainwhatMsisandoffer

suggestionsthatmayhelpyoumanagethedisease.Butright

atthestart,youshouldknowthesekeyfacts:

• AlthoughMsisalong-termandseriouscondition,many peoplelivefull,successful,andsatisfyingliveswiththe disorder.Msdoesnothavetochangewhoyouare

• everyone’sMsisdifferent—noonecanpredictexactlywhat yourswillbelike

• MostpeoplewithMshaveanormalornear-normallifespan

• Msisnotcontagious

• MostpeoplewithMsdonotbecomeseverelyphysically disabled

• MostpeoplewithMsremainabletowalk,butsome mayrequireacaneorotherassistivedevice

• MedicinestodaycanslowtherateatwhichMsprogresses. theycanalsoreducethesymptomsyouexperience

Asyouareabouttolearn,therearemanywaysyoucanmake

yourexperienceofMsmoremanageableandsuccessful.the

choicesyoumakecanmakeabigdifference!

It’ssomethingthatyouhave—

butitdoesn’thaveyou. –Teri Garr

6 7

WHyMe?

It’snormalforanybodywithaseriousdiseasetowonderwhy

theyhaveitandothersdon’t.WithMs,theanswerisunclear.

Mshasbeencalled“oneofthegreatunsolvedmysteriesof

modernmedicine.”Geneticfactorsmaymakesomepeople

morelikelytogetMs,butMsisnotdirectlyinherited.there

isno“Msgene”asthereisforsomeotherdisorders,suchas

Huntington’sdisease.

therearepatternsinwhodevelopsMs,buttheysuggestonly

clues,notanswers.Forexample:

• WomenaretwiceaslikelyasmentodevelopMs

• MsismorecommonamongwhitesthanthoseofAfrican, Asian,andHispanicdescent

• Msislesscommoninhot,sunnyregionsneartheequator

• earlyexposuretosometypesofvirusesorotherinfections hasbeenlinkedtoMs,thoughtheevidenceismixed

8 9

sIGnsoFMs

Mscausesawiderangeofsymptoms,sensations,and/orsigns.

Formanypatients,thesesymptomscomeandgo.Mostpeople

experiencetheirfirstsymptomsofMsbetweentheagesof20

and40.Initialsymptomsareofteneye-related,suchasblurredor

doublevision,red-greencolordistortion,ordecreasedvisionin

oneeye.someMspatientsexperiencemuscleweaknessintheir

handsandfeet,aswellasdifficultywithcoordinationandbalance.

Beforeapersonisdiagnosed,thesesignsandsymptomscanseem

mysteriousorworrisome.

HerearesomeotherpotentialsignsandsymptomsofMs:

• tirednessorfatigue

• numbness,prickling,or“pinsandneedles”sensations

• Musclestiffness

• Bladderproblems

• Depressedmood

• Problemswithwalking

AlthoughtheoriginsofMsremainelusive,agreatdealisknown

aboutthediseaseitself.ItisthoughtthatsymptomsofMsare

causedwhenthebody’simmunesystembeginstoattacknerves

inthebrainandspinalcord.nervesarelikewirescarrying

informationfromyoursensestoyourbrain,aswellasfromyour

brainouttoyourbody.Mostnervefibersarecoveredwithafatty

layercalledmyelin.Myelinactslikeinsulationaroundthenerves.

Itallowssignalstopassrapidlyfromonenervetoanother.

InMs,yourimmunesystemmalfunctionsandattacksthemyelin.

thisweakensorblocksthesignals.thesymptomsyoufeeldepend

onwhichnervesareaffected.Ifthenervestoyoureyesareattacked,

youmaygetblurredvisionorloseyoursighttemporarily.Ifthenerves

controlyourlegs,youmayhavedifficultywalking.

Fortunately,myelinhassomenaturalabilitytoregrow.Butwhen

myelinispermanentlyeroded,thenervefiberscanbedamagedor

severedaltogether.theseareasofdamageshowuponmagnetic

resonanceimaging(MRI)scansasspotscalledlesions.Bytaking

multiplescansovertime,doctorscantracktheprogressofthedisease.

DIDyouKnoW?

neurologistsaremedicaldoctors

whospecializeindisordersofthe

brainandnerves.theyarethe

specialistswhomostoftentreat

peoplewithmultiplesclerosis.

10 11

HoWIsMsDIAGnoseD?

symptomsofMsmimicthoseofmanyothertypesofdisorders.

that’swhythediseaseisusuallydiagnosedbyrulingoutother

conditions.Aneurologist(adoctorwhospecializesinthebrain

andnervoussystem)maydoaseriesofteststodetermine

whetheryouhaveMs:

• testsofyournervefunctionindifferentpartsofyourbody

(suchasreflexesandsensitivitytotouch)

• Aneyeexaminationforsignssuchasabnormalpupil

responsesorchangesinthewaytheeyemoves

• Magneticresonanceimaging(MRI)ofthebrainorspinal

cordtolookforthescars(lesions)ofMs

• Aspinaltap(lumbarpuncture)toseeifthereisevidenceof

abnormalimmuneactivityinthespinalfluid

DiagnosingMscantakesometime,whichmaybefrustrating.

Butit’svitalthatthediagnosisiscorrect!

12 13

FoRMsoFMs

Mshasmanyformsand“looks”verydifferentfromone

persontoanother.Peoplefeelsymptomsindifferentparts

oftheirbodiesandatdifferentlevelsofseverity.Despitethe

unpredictabilityofMs,thediseaseprogressesinoneoffour

generalpatterns.

Relapsing-remitting.thisisthemostcommontypeofMs.

About85%ofpeoplewithMshavethisformwhentheyare

initiallydiagnosed.PeoplewiththistypeofMshavetimes

whentheirsymptomsrapidlygetworse.Duringrelapses,

immunesystemactivitycausesinflammationoftheaffected

nervefibers.theseepisodesarecalled“relapses,”“attacks,”or

“exacerbations.”treatmentsaimedatreducinginflammation,

therefore,canbeeffectiveinquellingattacks.Peoplewiththis

formofMsexperienceaperiodofpartialorcompleterecovery

(remission)betweenattacks.

Primary-progressive.PeoplewiththistypeofMsexperiencea

slowbutcontinuousworseningoftheirdiseasefromtheonset,

withnodistinctrelapsesorremissions.thistypeisrelativelyrare:

onlyabout1in10peoplewithMshavetheprimary-progressive

form.Primary-progressiveMsinvolvesmuchlessinflammation

thaniscommoninrelapsing-remittingMs.Peoplewithprimary-

progressiveMsalsotendtohavefewerbrainlesionsthanpeople

withrelapsing-remittingMs.nonetheless,primary-progressive

Msisconsideredtobethemostserioustype.

Secondary-progressive.Peoplewiththisformtypicallyhave

aninitialperiodofrelapsing-remittingMs,followedbyasteady

worseningwithorwithoutrelapses.Beforemedicineswere

developedspecificallyforMs,abouthalfofthosewithrelapsing-

remittingMsprogressedtothisformofthediseasewithin10

yearsofdiagnosis.

It’simportanttoeducate

yourselfaboutthe

disease—becauseeveryone

isaffecteddifferently. –Teri Garr

14 15

HoWIsMstReAteD?

ManymedicinesareavailabletodaytohelppeoplewithMs.

somemedicinesworkdirectlytoslowtheprogressionofthe

diseaseandreducethenumberandseverityofrelapses.other

typesofmedicinescanbeveryhelpfulfordealingwithsomeof

thesymptomsofMs,suchasfatigueormooddifficulties.

AnumberofmedicinesarecurrentlyapprovedbytheFDAfor

treatingvariousformsofMs.thesearecalleddisease-modifying

therapies.theyhavebeenshowntoreducethefrequency

andseverityofclinicalattacks(relapses)andtoreducethe

accumulationoflesions(damagedoractivediseaseareas)

withinthebrainandspinalcord.Atthistime,thereareno

FDA-approvedmedicationsforprimary-progressiveMs.

newtreatmentsforMsthatcanbetakenorallyareemerging.

It’simportantthatyouspeaktoyourneurologistaboutwhat

treatment,noworinthefuture,isrightforyou.

youshouldtellyourdoctor

ifyouareusinganMs

medicationandyoubecome

pregnant,arebreastfeeding,

orareplanningtobecome

pregnant.

Progressive-relapsing.Fewerthan1in20peoplewithMs

havethisform,whichcombinesaspectsofrelapsing-remitting

andprimary-progressive.Peoplewiththistypehaveasteady

worseningofsymptomsbutalsohaveclearrelapseswith

orwithoutrecovery.Incontrasttorelapsing-remittingMs,

thediseasecontinuestogetworseintheperiodsbetween

relapses.

thetermclinically isolated syndromeisusedwhenaperson

whohasnotbeenpreviouslydiagnosedwithMsexperiences

aninitialsymptomorattackthatappearslikelytobecaused

byMsandwhichputsthepersonatahighriskforbeing

subsequentlydiagnosed.

16 17

Approvedtreatmentsincludedisease-modifyingtherapiesthat

areeitherinjectable—administeredbyyourselforbysomeoneat

home—ormustbegivenviaaslowinfusionintotheblood,which

isdoneinahealthfacility.

theAmericanAcademyofneurologyrecommendsthattreatment

withoneoftheinjectablemedicinesbeconsideredasquickly

aspossible.

Disease-modifyingtherapiesneedtobetakenonalong-termbasis.

theyarethebestdefensecurrentlyavailabletoslowdownthe

naturalcourseofMs.theymaynotmakeyoufeelanybetter,but

theyarelikelytokeepyoufromgettingworse.takingadisease-

modifyingmedicinemaybeaninvestmentinyourfuturehealth.

yourneurologistwillworkwithyoutofindthemedicinethatis

bestforyou.

PHysICALtHeRAPy

AnimportantaspectofanyMstreatmentisphysicaltherapy(Pt).

BecauseMscanaffectyourabilitytomovearound,Ptmaybe

ofgreatbenefit.Itisn’tacure-all,butPtcanlessensomeofthe

symptomsofMs,suchasweaknessorproblemswithbalance.

InPt,you’lllearnaboutmovementtechniques,strategies,and

equipmentthatcanmakedailytaskseasierorsafer.Aphysical

therapistcanteachyouexercisestostrengthenandloosenyour

muscles.youcandomanyoftheseexercisesathome.thegoal

istoimproveyourindependenceandqualityoflifebyrelieving

painandimprovingmovementandoverallfunction.

Physicaltherapycanhelpwith:

• Fatigue •Pain• Balanceproblems •Immobility• Lackofcoordination •Weakness

talktoyourhealthcareprovideraboutPt.Manyhospitalsoffer

Ptservices,thoughyoumayneedtogetanorderfromyour

doctororneurologisttoseeaphysicaltherapist.

18 19

tReAtInGotHeRMssyMPtoMs

ManymedicinescanhelppeoplewithMsdealeffectively

withsymptomsofthedisease.steroids,forexample,can

reducethedurationandseverityofattacksinsomepatients.

Musclerelaxantsandtranquilizerscanreducemusclespasms

orstiffness.Antidepressantmedicinesmayimproveyour

mood.Manydifferentmedicinesareavailableineachofthese

categories.talktoyourneurologist.Heorshewillhelpyoufind

themedicinesthatarebestforyou.

ALteRnAtIVeAnDCoMPLeMentARytHeRAPIes

ManypeoplewithMstrysomekindofalternativeor

complementarytherapyintheireffortstocopewith

thedisease.

todate,noalternativeorcomplementarytherapy

hasbeenshowntoslowtheprogressionofMs.

However,manypeoplefindthatalternativeor

complementarytherapieshelpthemreduce

stressandfeelbetter.

Beforedecidingtopursueoneofthese

therapies,investigateallpotentialrisks,

benefits,andcosts,anddiscussthem

withyourneurologist.

20 21

LIFeWItHMs

Asstatedearlier,peoplewithMscanexpecttoliveaslong,or

nearlyaslong,asanybodyelse.thatmeansyouneedtotake

careofyourselfjustasyouwouldifyoudidn’thaveMs.

Byactivelyengaginginhealthybehaviors,youcannotonly

reduceyourMssymptoms,butyoucanalsoimproveyour

health,overallfunctioning,andmood.Herearesomeimportant

thingstofocuson:

Avoid heat.Heatdoesn’tmakeMsworsepermanently,but

manypeoplewithMsfindthathot,humidweather,ahotbath

orshower,orafevertemporarilymakestheirsymptomsworse.

Avoidmiddayheat,batheinwarmratherthanhotwater,anduse

icepacks,iceddrinks,andcoolbathstoreduceyoursymptoms.

Eat a healthy diet. therecommendeddietforpeoplewithMs

isthesameonerecommendedforalladults.thatmeansplenty

ofvegetablesandfruits,wholegrains,high-fiberfoods,cutting

backonfat,andavoidingdrinksandfoodswithaddedsugar.

specialorfaddietshavenotbeenshowntoimpactthedisease’s

course.yourhealthcareprofessionalcanhelpyoudeterminea

balanceddietthatfitsyourneeds.

Stop smoking.Ifyousmoke,stopnow.Althoughnospecific

linkhasbeenidentified,recentstudieshavesuggestedthat

smokersaremorelikelytodevelopMsthannonsmokers,and

smokingmaymakeMsgetworsefaster.

Exercise.exercisealonecannotalterMs,butitcanimprove

youroverallhealthandmaypreventmanycomplicationsthat

stemfrominactivity.exercisecanalsoimproveyoursleep,

mood,andgeneralfunctioning.Alwaystalktoyourhealthcare

professionalbeforestartinganexerciseprogram.

exerciseisveryimportant,to

keepmovingasmuchasyou

can.Becauseyouknowwhat

theysay:Ifyoudon’tuseit,

youloseit! –Teri Garr

22 23

Reduce stress.thereisnoclearevidencethatstressmakes

Msworse,butnobodyfeelsgoodwhenthey’restressedout.

Learningwaystorelax,acceptwhatcan’tbechanged,setlife

priorities,andsimplifylifecanbeveryhelpful.

Connect with others.Awiderangeofgroupsexistsforpeople

withMs,both“live”andonline.thesecanprovideinvaluable

emotionalsupport,socialcontacts,andhelpfulinformation(see

theResourcessectionattheendofthisbookletforplacesto

findsuchgroups).It’salsoimportanttotalktoyourimmediate

familymembers.youcantellothersaboutyourconditionwhen

thatfeelscomfortableforyou—butthereisnoreasontofeel

ashamedthatyouhaveMs.youmaybesurprisedathow

supportiveandencouragingothersarewhenyoutellthemabout

yourcondition.

Get enough sleep.Mssymptomscanmakeithardtosleep.

Ringingintheears,needingtogetupfrequentlytogotothe

bathroom,andhaving“restlesslegs”canallmakegetting

agoodnight’ssleepdifficult.Fortunately,therearearange

ofapproachesthatcanimprovesleepandreducenighttime

waking,including:

• Painmedicines

• sleepmedicines

• Regularaerobicexercise

• Avoidingcaffeine

• Hypnosis

• Guidedimagery

24 25

CA

Reg

iveR

tHInGstoKeePInMInD

BeingdiagnosedwithMsisalife-changingexperience,butit

doesn’tneedtobelife-diminishing.Msisserious,butthereare

manythingsyoucandotomakeyourexperiencewithMsmore

manageable.youhavetimetothinkaboutthingsandtalkwith

yourhealthcareprofessionalbeforemakingdecisionsabout

treatmentsorlifestylechanges.

Remember:youaremorethanyourMs!you’restillthesame

personyouwerebeforeyouwerediagnosed,andbecause

peoplewithMsusuallyliveaslongasanybodyelse,youhave

tothinklongtermandtakecareofyourself.

ByreadingthisbookletandwatchingtheDVD,you’vealready

takenakeystep:learningaboutMs.you’veseenthatyou’re

notalone,thatthereishope,andthattherearemanythings

youcandotoliveanactive,satisfyinglifedespitethis

chronicdisease.

ResouRCes

American Academy of Neurology American Academy of Neurology Foundationwww.aan.com800-879-1960

Neurology Now® MagazineFree magazine for patients and caregivers, courtesy of the American Academy of Neurology.www.neurologynow.com

National Multiple Sclerosis SocietyInformation available on a variety of topics relating to life with MS.www.nationalMssociety.org800-344-4867

MS WorldAn online information and support site for people with MS, including chat rooms and bulletin boards.www.msworld.org

MyMSMyWayResource for connecting people with multiple sclerosis to accessible technologies.www.MyMsMyWay.com

Can Do Multiple SclerosisA nonprofit organization that offers MS programs based on the philosophy that people can have a chronic disease and also maintain their health. www.mscando.org 800-367-3101

RE

So

uR

CE

S

26 27

Collaborator

American Academy of Neurology

theAmericanAcademyofneurology(AAn),establishedin1948,

isaninternationalprofessionalassociationofmorethan22,000

neurologistsandneuroscienceprofessionalsdedicatedtopromoting

thehighestqualitypatient-centeredneurologiccare.Aneurologistisa

doctorwithspecializedtrainingindiagnosing,treating,andmanaging

disordersofthebrainandnervoussystem,suchasmultiplesclerosis,

Alzheimer’sdisease,epilepsy,stroke,andParkinson’sdisease.Formore

information,visitwww.aan.com.

American Academy of Neurology Foundation

theAmericanAcademyofneurologyFoundation(AAnFoundation)

raisesmoneytosupportvitalresearchintotheprevention,treatment,

andcureofbraindisorders,suchasmultiplesclerosis.theAAn

Foundationiscommittedtoimprovingpatientcare,qualityoflife,and

publicunderstandingofthebrainandotherneurologicdisorders.For

moreinformationortomakeadonationtotheAmericanAcademyof

neurologyFoundation,visitwww.buyabrain.org.

sponsor

Novartis Pharmaceuticals Corporation

LocatedineastHanover,newJersey,novartisPharmaceuticals

Corporationdevelops,manufactures,andmarketsleading

innovativeprescriptiondrugsusedtotreatanumberofdiseasesand

conditions.thecompany’smissionistoimprovepeople’slivesby

pioneeringnovelhealthcaresolutions.Formoreinformation,visitwww.novartis.com.

CreditsLiving Well: A Guide to Managing Multiple Sclerosis for Patients and Families hasbeenmadepossiblethroughtheexpertise,time,andeffortsofmanyindividuals.specialgratitudeto:

Collaborator

American Academy of Neurology Foundation

Contributors to the Video

Fred D. Lublin, MDFellowoftheAmericanAcademyofneurologysaundersFamilyProfessorofneurologyDirector,CorinneGoldsmithDickinsonCenter forMsMountsinaischoolofMedicine,ny

Aaron E. Miller, MDFellowoftheAmericanAcademyofneurologyProfessorofneurologyMedicalDirector,CorinneGoldsmithDickinson CenterforMsMountsinaischoolofMedicine,ny

sponsoredby Novartis Pharmaceuticals Corporation

specialthanksto:Teri Garr

Project ManagerGina Conrad BlackExecutive Producer Conrad Productions

Guidebook AuthorStephen BraunMedical WriterAmherst, MA

Guidebook DesignCinda DebbinkDesign Partnerswww.dgdesignpartners.com

Video ProductionTania WilkExecutive ProducerAlan Weiss Productionswww.awptv.com

DISCLOSURE: Dr. Lublin serves on the editorial board of Multiple Sclerosis; received grants for research from Acorda Therapeutics, Inc., Biogen Idec, Genentech, Inc., Novartis Pharmaceuticals Corporation, Teva Neuroscience, Genzyme, Sanofi-Aventis, NIH, and NMSS; received funding for service as a consultant, on advisory boards, and Drug Safety Medical Board, from Bayer HealthCare Pharmaceuticals, Biogen Idec, BioMS Medical Corp., EMD Serono, Inc., Genentech, Inc., Novartis, Pfizer, Teva Neuroscience, Genmab, Medicinova, Actelion, Allozyne, Sanofi-Aventis, Acorda, Questcor, Avanir; received honoraria from EMD Serono, Pfizer, Teva Neuroscience; owns stock in Cognition Pharmaceuticals, Inc.

Dr. Miller serves as the editor for Continuum; received funding for service on scientific advisory boards and as a consultant for Acorda Therapeutics, Biogen Idec, Merck Serona, Sanofi-Aventis, Glaxo Smith Kline, Novartis, Teva Neuroscience; serves as Chairman of Independent Data Monitoring Committee, ONO, for Daiichii-Sankyo; received honoraria from EMD Serono, Pfizer, Teva Neuroscience; received funding as an investigator in clinical trials for Acorda, Genentech, Genzyme, Novartis, Sanofi-Aventis, Teva Neuroscience.

Stephen Braun reports no potential conflicts of interest.

featuring teri Garr

EXD9000198

Presented by Sponsored by

living well A Guide to MAnAGinG Multiple ScleroSiS for pAtientS And fAMilieS

Beingdiagnosedwithmultiplesclerosis(Ms)isalife-changing

experience,butitdoesn’tneedtobelife-diminishing.today,Ms

istreatablewithmedicinesandothertypesoftherapies.that’s

goodnewsfortheroughly400,000AmericanswhohaveMs.

Mstakesmanyforms.everyone’sMsisdifferent,andnoonecan

predictexactlywhatyourswillbelike.Butthebottomlineisthat

youaremorethanyourMs.you’restillthesamepersonyouwere

beforeyouwerediagnosed.youhavetimetothinkaboutthings

andtalktootherpeopleandyourhealthcareprovidersbefore

makingdecisionsabouttreatmentsorlifestylechanges.

thisbookletandDVDareagreatwaytostarthandlingMs.

BylearningaboutMs,you’llalsolearnthatthereisrealhope.

therearemanythingsyoucandotoliveanactive,

satisfyinglifedespitethischronicdisease.

DVDInside