a guide for patients and families · what causes parkinson’s disease? doctors and researchers...

DVDInside

Featuring Michael J. Fox

A guide For pAtients And FAMilies

A guide For pAtients And FAMilies

Copyright 2013

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

WhatCausesParkinson’sDisease?............................................. 6

HowDoIKnowIfIHaveParkinson’s?......................................... 8

MedicinesforParkinson’sDisease............................................. 12

DeepBrainstimulation............................................................... 15

stepsYouCantake.................................................................... 16

CaringforaPersonwithPD....................................................... 18

Conclusion.................................................................................. 20

Resources................................................................................... 21

DISCLAIMER: This guidebook and DVD program are intended for informational purposes only. The program was produced by Conrad Productions and Alan Weiss Productions, with editorial oversight from the American Academy of Neurology. Financial support was provided by AbbVie.

The guidebook author is Stephen Braun and the DVD scriptwriter is Deborah Gobble. Complete disclosure information on the physician experts who participated in this program (Dr. Stanley Fahn and Dr. Kathleen Shannon) is available at AAN.com.

The writers, producers, program presenter, and program funder make no representations or warranties, express or implied, regarding the accuracy or completeness of the information provided within.

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.

Photos in this booklet are used for illustrative purposes only. Any person depicted in the licensed material is a model, not an actual patient or health care professional.

4 5

IntRoDuCtIon

Parkinson’sdisease(PD)affectsthewayyourbraincontrols

yourmuscles.thiscanmakeithardtowalkanddomanyother

kindsofmovement.Morethan1millionpeopleintheusalone

havePD.Andeveryyear,about40,000peoplelearntheytoo

havethedisease.Ifyouoralovedonehavebeendiagnosed

withPD,youarenotalone!

PDmostoftenaffectsolderadults,butabout1outofevery

10peoplewiththediseaseisyoungerthan45.usually,PD

symptomsstartslowlyandgraduallygetworse.Buthowa

personfeels,andhowquicklythediseasegetsworse,canvary

alotfrompersontoperson.that’swhyit’simportanttoseea

neurologistifPDissuspected.

AlthoughPDcannotyetbecured,beingtreatedwithmedicine

canhelpreducesomeofthesymptoms.today,peoplewithPD

maylivemanyyearswiththecondition.

thereareanumberofthingsyoucandotohelpmanagePD

andcontinueyourdailyactivities.thisbookletandDVDcan

help.You’lllearnmoreaboutPDandhowitistreated.Working

closelywithyourhealthcareprofessionals,andmakinghealthy

choicesinyourdailylife,areimportantstepstocopingwell

withthechallengesofParkinson’sdisease.

DIDYouKnoW?

Neurologists aredoctorswhospecializeindisordersofthebrainandnerves.

Movement disorder specialistsareneurologistswhohavestudiedanadditionalonetothreeyearsinamovementdisorderprogram,orspecializeintreatingpeoplewithParkinson’sdiseaseandothermovementdisorders.

6

WHAtCAusesPARKInson’sDIseAse?

Doctorsandresearchersstillhavemuchtolearnabout

Parkinson’sdisease.For9outofevery10peoplewithPD,

noclearcausecanbedetermined.

eventhoughtherootcauseofPDisusuallynotknown,doctors

doknowalotabouthowthediseaseaffectsthebrain.PD

causesaslowlossofacertaintypeofbraincell.thesecells

produceachemicalcalleddopamine,whichhelpscontrol

movement.Whenabout60%to80%ofthesecellsarelost,

dopaminelevelsdropsolowthatmovement-relatedsymptoms

appear.shaking,stiffness,andslownessofmovementaresome

commonsymptoms.Forreasonsthatarestillnotclear,men

aresomewhatmorelikelytogetPDthanwomen.

DIDYouKnoW?

Dopamine isachemical

messengerinthebrain.

Ithelpsyoucontrolyour

abilitytomove.

7

8 9

HoWDoIKnoWIFIHAVePARKInson’s?

thereisnofoolprooftestforParkinson’sdisease.nobloodtest,

brainscan,orx-raycanproveforsurethatapersonhasPD.

Instead,thediseaseisdiagnosedbycertainsignsandsymptoms.

therearefourclassicsymptomsofPD:

• tremor(shaking)whenalimbisatrest,mostcommonlyin onehand

• slowmovementinthearmsorlegs

• stiffnessofthearmsorlegs

• Lossofbalance

otherpossiblesignsofearlyPDinclude:

• smallhandwriting

• Difficultywithtasksthatrequirefinecontrol,suchas buttoningashirt

• slowwalking,draggingofafoot,ordecreasedarmswing whenwalking

Whenthediseaseworsens,apersonmayhaveahardtime

balancing.Heorshemayalsotriporfallfrequently.

noteveryonewithPDhasallthesesymptoms.somepeople

havesymptomsforyearsbeforetheyareproperlydiagnosed.

10 11

PatientswithPDmayalsohavesymptomsthatdonotinvolve

movementortheirmuscles.thesesymptomsmayinclude:

• Difficultywiththinkingandmemory

• Depressedmood

• Lossofthesenseofsmell

• Difficultywithsleeping

• Constipation

• sexualdysfunction

• Painordiscomfortinarmsorlegs

Asyoucansee,PDisacomplexcondition.Itcanalsobe

challengingtotreat.thatiswhyitisbesttobediagnosed

andtreatedbyaneurologistormovementdisorderspecialist.

Youcanfindaneurologistormovementdisorderspecialistin

yourareathroughsomeofthegroupslistedintheResources

sectionatthebackofthisbooklet.

12 13

MeDICInesFoRPARKInson’sDIseAse

thereareseveraltypesofmedicinesthatcanhelprelievesome

ofthesymptomsofPD.overall,thetreatmentsforPDtrytobring

dopaminelevelsinthebrainbacktonormal.Doingsomayrelieve

thesymptomsofPD.thekindsofmedicineused,andthedose

youtake,maychangewithtime.Asthediseaseprogresses,it

mayalsobecomemoredifficulttocontrolsymptoms.Buttoday

manydifferenttypesofmedicinesareavailable,whichmay

extendthelengthoftimesymptomscanbecontrolled.

HerearethetypesofmedicinesusedtotreatPD.someofthese

medicinesmaybetakenalone,orincombinationwitheachother:

Levodopa/carbidopaworksbytemporarilyincreasingthe

amountofdopamineinthebrain.

Dopamine agonistsmimictheeffectsofdopamineinthebrain.

COMT inhibitorsareusedtoextendtheactionoflevodopa.

However,theyworkonlyiflevodopaistaken.theyarenotuseful

bythemselves.

MAO-B inhibitorsslowthebreakdownofdopamineinthebrain.

thismakesmoredopamineavailable.

Anticholinergic medicines and amantadinemaybeusedto

helpcontrolthetremorthatmanyPDpatientsexperience.

Allofthesemedicinesmaycausesideeffects.talktoyour

neurologistaboutwhatsideeffectstoexpect,andwhattodo

ifyouexperiencethem.

14 15

DeePBRAInstIMuLAtIon

ApossibleoptionforpeoplewithadvancedPDisdeep brain

stimulation(DBs).WithDBs,tinyelectrodes(wires)aresurgically

implantedinthebrain.theelectrodesareconnectedtoasmall

batteryanddelivermildelectricalpulsesthatstimulatethebrain.

AlthoughDBscanhelptreatsomeofthesymptomsofPD,itis

notrightforallpeoplewithadvancedPD.Yourneurologistor

movementdisorderspecialistcantellyouifthistreatmentmight

behelpfulforyou.

WHenAMeDICIne“WeARsoFF”

overtime,thewayyourbodyrespondstoaPDmedicine

maychange.oftenyourmedicinesworknormally

torelieveyoursymptoms(“on”time).Youmayalso,

however,havetimeswhenthemedicinedoesnotwork

well(“off”time).

somepeoplewhotakePDmedicinesoveralong

timecandevelopmore“off”time.Inaddition,some

peoplemayexperiencespasmsoruncontrolledmuscle

movementsduetothemedicinestheyaretaking.

somesideeffectsmaybereducedwithothertypesof

medications.tellyourhealthcareprofessionalifyouor

alovedoneareexperiencingincreasing“off”timeor

havinganysideeffects.

16 17

stePsYouCAntAKe

therearemanythingsyoucandotohelpmanageyourlife

withPD.Howyouexercise,whatyoueat,andhowyouuse

yourmindcanmakeadifference!Herearesomethingsthat

havebeenfoundtohelpthosewithPD:

• Exercise–especiallyswimming,stretching,walking,and

exercisestoimproveyourbalance.Youmightalsotryphysical

therapy,whichismorefocusedonsuchthingsasbalance,

walking,andstrengtheningspecificmuscles.

• Healthy eating–anormaldietwithplentyoffruitsand

vegetableswillpromoteoverallwell-beingforPDpatients,just

asitwouldforanyoneelse.Itisnotnecessarytotakevitamin

supplements,unlesssuggestedbyyourdoctor.

• Voice therapy–peoplewithPDsometimeshavespeech

problems.therapyfocusedonimprovingvocalcontrolandvoice

volumemayhelpyoucommunicatebetterwithothers.

• Alternative approachessuchasacupunctureandmassage

arewidelyusedbypeoplewithPD.somesmallstudiesof

acupunctureandmassagetherapysuggestthatsuchtherapies

mayhelprelievesymptoms.otherstudieshavefoundnobenefit.

Alwaysbesuretotellyourneurologistaboutanyalternative

treatmentsorherbalsupplementsyoumaybeusing.

18 19

CARIngFoRAPeRsonWItHPD

PeoplewithPDoftenneedsomehelpwitheverydaytasks.they

mayneedmorehelpasthediseasegetsworse.spousesand

otherfamilymembersorfriendsoftenprovidethishelp.But

caringforapersonwithParkinson’sdiseasecanbetiringor

stressful.Caregiversshouldtalktoothersaboutanyfrustrations

theyareexperiencing.talktofriendsorfamilymembers,orjoina

supportgroupforcaregivers.(theResourcessectionattheback

ofthisbookletcanhelpyoufindasupportgroupinyourarea.)

Caregiversneedtotakecareofthemselvesandmakesure

theirownneedsarebeingmet.Youdon’twantto“burnout”

ordevelopyourownphysicaloremotionalproblems!You

needtostayhealthy,soyoucanbestcareforalovedonewith

Parkinson’sdisease.

Watchforsignsofdepression,confusion,memoryproblems,

orothermentalproblemsinthepersonwithPD.Reportany

concernspromptlytoyourlovedone’sneurologistordoctor.

20 21

ConCLusIon

PDisaseriousillness,buttherearereasonsforhope!

Peoplediagnosedtodaycanbenefitfrommedicinesthat

helpmanagesymptomsofPD.newtreatmentsare

beingdiscoveredasscientistslearnmoreaboutthis

complicateddisease.

LivingwithPDisajourneythatchangesgraduallyovertime.

Withthehelpofyourneurologistandsupportfromfamily

membersandfriends,youcanlivewellandthrivewith

Parkinson’sdisease.

RES

OURCES

ResouRCes

American Academy of NeurologyAAn.com

American Brain FoundationAmericanBrainFoundation.org

Neurology Now® Magazineneurologynow.com

Neurology Now® Books“Navigating Life with Parkinson Disease”AAn.com/view/PatientBookseries

American Parkinson Disease Associationapdaparkinson.org

Michael J. Fox Foundation for Parkinson’s Researchmichaeljfox.orgTo learn how you could help advance Parkinson’s research by participating in clinical trials, click on the Fox Trial Finder link

National Parkinson Foundationparkinson.org

Parkinson’s Disease Foundationpdf.org

Parkinson’s Action Networkparkinsonsaction.org

Parkinson Allianceparkinsonalliance.org

Fundingsupport

AbbVie AbbVieisaglobal,research-basedbiopharmaceuticalcompanyformedin2013followingseparationfromAbbott.thecompany’smissionistouseitsexpertise,dedicatedpeopleanduniqueapproachtoinnovationtodevelopandmarketadvancedtherapiesthataddresssomeoftheworld’smostcomplexandseriousdiseases.In2013,AbbVieemploysapproximately21,000peopleworldwideandmarketsmedicinesinmorethan170countries.Forfurtherinformationonthecompanyanditspeople,portfolioandcommitments,pleasevisitwww.abbvie.com.Follow@abbvieontwitterorviewcareersonourFacebookorLinkedInpage.

American Academy of Neurology theAmericanAcademyofneurology(AAn),establishedin1948,isaninternationalprofessionalassociationofmorethan26,000neurologistsandneuroscienceprofessionalsdedicatedtopromotingthehighestqualitypatient-centeredneurologiccare.Aneurologistisadoctorwithspecializedtrainingindiagnosing,treating,andmanagingdisordersofthebrainandnervoussystem,suchasParkinson’sdisease,Alzheimer’sdisease,multiplesclerosis,epilepsy,andstroke.

FormoreinformationvisitAAn.com.

American Brain FoundationtheAmericanBrainFoundation,thefoundationoftheAmericanAcademyofneurology,isanindependent501(c)(3)organizationthatfundsthemostcrucialresearchtocurebraindisease,suchasAlzheimer’sdisease,stroke,Parkinson’sdisease,neuropathy,multiplesclerosis,andepilepsy.Braindiseaseaffectsmorethan50millionintheunitedstatesalone.Inmovingtowarditsvision,theAmericanBrainFoundation’sgoalistoreducetheprevalenceofbraindisease50percentby2040.

FormoreinformationvisitAmericanBrainFoundation.org.

ProgramPresenters

22 23

CreditsParkinson’s Disease: A Guide for Patients and Families wasmadepossiblethroughtheexpertise,funding,time,andeffortsofmanyindividuals.specialgratitudeto:

Program Presenters

American Academy of Neurology American Brain Foundation

Funding Support AbbVie

Contributors to the Video

Stanley Fahn, MD, FAANH.HoustonMerrittProfessorofneurologyDirectoroftheCenterforParkinson’sDiseaseandotherMovementDisordersatColumbiauniversity

scientificDirector,theParkinson’sDiseaseFoundationnewYorkCity

Kathleen M. Shannon, MDProfessorofneurologyRushuniversityMedicalCenter

Director,Huntington’sDiseasesocietyofAmericaCenterofexcellenceatRushuniversityMedicalCenterChicago

specialthanksto:Michael J. Fox and the Michael J. Fox Foundation for Parkinson’s Research

Project ManagerCarol BrandenburgExecutive Producer Conrad & Associates

Guidebook AuthorStephen BraunMedical Writerbraunmedicalmedia.com

Guidebook DesignCinda DebbinkDesign Partnersdgdesignpartners.com

Program Research and DevelopmentElizabeth T. Conrad, MD, DABFM

Michael J. Fox photos by Mark Seliger

DVDInside

Parkinson’sdisease(PD)isaseriousillness,buttherearereasons

forhope.Peoplediagnosedtodaycanbenefitfrommedicines

thathelpmanagesymptomsofPD.newtreatmentsarebeing

discoveredasscientistslearnmoreaboutthiscomplicateddisease.

LivingwithPDisajourneythatchangesgraduallyovertime.

Withthehelpofhealthcareprofessionalsandsupportfrom

familymembersandfriends,youcanlivewellandthrive

withParkinson’sdisease.

In this booklet and DVD, you will learn about:

•signsandsymptomsofPD

• treatmentsthatmayreducesymptoms

• thingsyoucandotoimprove youroverallhealth

A guide For pAtients And FAMilies

Presented by Funding Support provided by