PARKINSON S DISEASE SPOTLIGHT ON MOVEMENT FUNCTION: COPING WITH ON/OFF PERIODS THURSDAY, MAY 11, 2017 WELCOME AND INTRODUCTIONS Stephanie Paul Vice President Development and Marketing American Parkinson Disease Association 1
PRESENTATION Lisa M. Shulman, MD Professor of Neurology The Eugenia Brin Professor in Parkinson s Disease and Movement Disorders The Rosalyn Newman Distinguished Scholar in Parkinson s Disease Director, University of Maryland PD & Movement Disorders Center University of Maryland School of Medicine Medical Director APDA Information and Referral Center University of Maryland Medical Center, Baltimore, MD WHAT ARE MOTOR FLUCTUATIONS? o Neuro-Mythology: o Over time PD medications stop working. o PD meds continue to work throughout PD o But with time, achieving a smooth, robust response is more challenging o Cause: Progression of brain changes, not loss of effect of the medications 2
GRADUAL ONSET OF FLUCTUATIONS 1 to 5 Years The Honeymoon Period 5 to 10 Years End of Dose Wearing Off 10+ Years Motor Fluctuations WHY DO FLUCTUATIONS DEVELOP? Neuronal Injury Disrupted Conversion LD to DA Impaired LD Absorption Motor Fluctuations Disrupted Smooth DA Release 3
EARLY PD - THE HONEYMOON PERIOD On On A FINE BALANCE On Periods Off Periods 4
A FINE BALANCE On with Dyskinesia Severe Off TIPPING THE BALANCE On Periods Off Periods 5
TYPES OF MOTOR FLUCTUATIONS On Periods ~ Off Periods Partial On ~ Partial Off End-of-Dose Wearing Off Morning Off Delayed On Dose Failure Unpredictable Offs AM I HAVING MOTOR FLUCTUATIONS? Common Symptoms of Off Return of tremor Slowing down More difficulty rising from chair, getting in/out of car Freezing of gait & Start hesitancy Sense of unease & anxiety Muscle cramping - Toe curling Dystonia Off-related Pain 6
I HAVE FLUCTUATIONS WHAT CAN I DO? Low-Hanging Fruit Adherence Patient-Clinician Communication Med Schedule Adjustment Optimize Med Absorption The Basics Use PD Meds Wisely Movement Disorder Specialists Med Choice? Med Dose? Med Schedule? Know when to start meds know when to stop meds Ratcheting Up Optimizing drug delivery Surgical Approaches Clinical Trials OPTIMIZING DRUG DELIVERY Transdermal Patch Apomorphine Injection Rescue Therapy Levodopa Intestinal Gel 7
SURGICAL APPROACHES Deep Brain Stimulation Pros: Well-established, No lesion, Setting adjustment Cons: Burr hole, Device/battery maintenance Focused Ultrasound Pros: Simpler: No burr hole, No device/battery Cons: New & under development, Lesion, No adjustment CLINICAL TRIALS FOR MOTOR FLUCTUATIONS New Study Drugs New Drug Preparations Inhaled, Sub-lingual, SubQ continuous delivery New Surgical Approaches Disease Modification - Prevention 8
LET S TALK ABOUT MANAGING YOUR NEUROLOGIC CONDITION Whether you re diagnosed with PD, diabetes or stroke, a chronic condition requires a whole new set of skills. Skills like managing: your daily activities your symptoms your medications & treatments your communication with your health team your emotions and social interactions WHAT PREDICTS HOW YOU DO? 1. Your knowledge about your condition? 2. Your skills in managing your condition? 3. Your emotional state anxiety, depression, motivation? 4. Your confidence in managing your condition? 9
WHAT PREDICTS HOW YOU DO? 1. Your knowledge about your condition? 2. Your skills in managing your condition? 3. Your emotional state anxiety, depression, motivation? 4. Your confidence in managing your condition! YOUR CONFIDENCE IN MANAGING YOUR CONDITION! Your confidence in managing your condition Your belief that you can manage new situations Fitting a new dosing schedule in your daily life Handling anxiety How do I tell people about my health problem? Your general sense of control A new diagnosis pulls the rug out from under us How do we get back on our feet? WE CALL THIS SENSE OF CONTROL SELF-EFFICACY FOR MANAGING CHRONIC CONDITIONS 10
LET S TALK ABOUT MANAGING YOUR NEUROLOGIC CONDITION The key to good outcomes is developing- a solid fund of knowledge the basic skills to manage your condition a sense of confidence and control in your daily life YOUR FUND OF KNOWLEDGE 11
DEVELOPING BASIC SKILLS TO MANAGE YOUR CONDITION A Basic Self-Management Skill: Patient Clinician Communication Pre Visit Preparation: Your 3 Lists Your Problem List Priorities Patient and Carepartner Lists Consensus? Your Medication List Your Question List DEVELOPING EFFECTIVE PATIENT-CLINICIAN COMMUNICATION THE FEEDBACK LOOP Fund of Knowledge- Your 3 Lists Patient Clinician Communication Observation & Documentation Shared Decision- Making Treatment Adherence 12
YOUR DAILY LIFE AN EXAMPLE How can I manage my motor fluctuations? TO MANAGE FLUCTUATIONS - YOUR PD DIARY To improve communication with your neurologist To track On and Off Periods To find relationships between on-off s and dosing To identify opportunities for better management To understand your On and Off Periods My Off : Toes left foot curl, left hand tremor returns, walking is effortful My On : Minimal tremor, walking feels normal, some dyskinesia of left arm 13
YOUR PD DIARY of Day Med Dose On On with Dyskinesia Off Sleep 6:30 7 am 7-7:30 am 7:30 8 am 8 8:30 am 8:30 9 am 9 9:30 am 9:30 10 am 10 10:30 am 10:30 11 am 11 11:30 am And so on INTERPRETING YOUR PD DIARY of Day Med Dose On On with Dyskinesia Off Sleep 6:30 7 am 7-7:30 am Early AM Off 7:30 8 am 8 8:30 am 8:30 9 am On 9 9:30 am 9:30 10 am 10 10:30 am 10:30 11 am 11 11:30 am And so on On with Troublesome Dyskinesia End of Dose Wearing Off 14
USING YOUR PD DIARY FOR SHARED DECISION-MAKING of Day Med Dose On On with Dyskinesia Off Sleep 6:30 7 am Early AM 7-7:30 am Off 7:30 8 am 8 8:30 am 8:30 9 am On 9 9:30 am 9:30 10 am 10 10:30 am 10:30 11 am 11 11:30 am And so on On with Troublesome Dyskinesia End of Dose Wearing Off Tremor returns, Toes curl, Foot cramps & Freezing of Gait SELF-MANAGEMENT, SELF-EFFICACY & HEALTH OUTCOMES S-M S-E QoL Fund of Knowledge Self- Management Skills Self-Efficacy for Managing Chronic Conditions Better Outcomes- Less Symptoms Less Disability 15
HOW CAN WE MANAGE MOTOR FLUCTUATIONS? Individualized Care & Clinically Meaningful Outcomes require high quality communication between the The PWP The Family The Health Team QUESTION & ANSWER Lisa M. Shulman, MD 16
CLOSING REMARKS Stephanie Paul Vice President Development and Marketing American Parkinson Disease Association FOR ADDITIONAL INFORMATION, ANSWERS TO YOUR QUESTIONS, OR FOR ADDITIONAL RESOURCES Please visit our website www.apdaparkinson.org Or call us 1-800-223-2732 17