LSVT Global Public Webinar Series

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1 LSVT Global Public Webinar Series Title: Presenters: Atypical and Advanced Parkinsonian Disorders: An Overview and Discussion of Application to LSVT BIG Laura Gusé, MPT, MSCS Beth Marcoux, DPT, PhD Date Presented: July 18, 2018 Copyright: The content of this presentation is the property of LSVT Global and is for information purposes only. This content should not be reproduced without the permission of LSVT Global. Contact Us: Web: Phone: (toll free), (direct)

2 Atypical and Advanced Parkinsonian Disorders: An Overview and Discussion of Application to LSVT BIG Laura Gusé, MPT, MSCS Chief Clinical Officer of LSVT BIG LSVT Global, Inc. LSVT Training and Certification Faculty Beth Marcoux, DPT, PhD LSVT BIG Training and Certification Faculty This work was supported, in part, by the: National Institutes of Health - R01 DC01150, R21DC006078, R21 NS043711, Michael J. Fox Foundation, Parkinson Alliance and Davis Phinney Foundation Instructor Biographies Laura Gusé, MPT, MSCS Ms. Guse received her Master s Degree in Physical Therapy at the University of North Dakota in Ms. Guse has worked extensively in the area of neurodegenerative and neurological disorders both in outpatient and inpatient settings. She specializes in treatment of Parkinson disease and multiple sclerosis. She is certified in LSVT BIG, and is the LSVT BIG Chief Clinical Officer for LSVT Global, Inc. Beth Marcoux, DPT, PhD Dr. Marcoux holds a BS in Physical Therapy from Russell Sage College, an advanced Master s degree in Physical Therapy Education from the University of Alabama, Birmingham, a Ph.D. in Public Health (Health Behavior and Health Education) from the University of Michigan and a Doctor of Physical Therapy from the Massachusetts General Hospital Institute for Health Professions. She has served on physical therapy faculties at the University of Vermont, the University of Michigan, and University of Michigan-Flint, Henry Ford Community, Oakland University and the University of Rhode Island where she was Professor and Chair of Physical Therapy for nine years. She is certified in LSVT BIG and for the past several years her clinical experience has focused on the treatment of patients with Parkinson s disease. Disclosures All of the LSVT BIG faculty have both financial and non-financial relationships with LSVT Global. Non-financial relationships include a preference for the LSVT BIG as a treatment technique. Financial Relationships include: Ms. Guse and Dr. Marcoux receive consulting fees and travel reimbursement from LSVT Global, Inc. Information to Self-Report Activity for PT and OT Professionals This LSVT Global webinar is NOT state registered for CEUs, but it may be used for self-reported CEU credit as non-registered CEUs. If you are a PT or OT professional and would like to selfreport your activity, webinars@lsvtglobal.com to request a certificate after completion of the webinar which will include your name, date and duration of the webinar. Attendance for the full hour is required to earn a certificate. Licensing requirements for CEUs differ by state. Check with your state licensing board to determine if your state accepts non state registered CEU activities. Plan for Webinar Logistics (questions, handouts) Discuss application of LSVT BIG to individuals with atypical and advanced PD Survey will automatically launch at the conclusion of the webinar (less than 5 minutes to complete) Objectives Upon completion of this webinar, participants will be able to: Define advanced Parkinson disease (PD) and typical features that characterize advanced PD Describe several atypical parkinsonism disorders Discuss the application of LSVT BIG and how the LSVT BIG protocol can be customized to meet the needs of individuals with advanced or atypical PD Copyright 2018, LSVT Global Inc. 1

3 Clinical Diagnosis of Idiopathic PD Early Motor symptoms (2/3) (bradykinesia, tremor, rigidity) Insidious onset nonspecific non-motor and motor early symptoms Asymmetrical distribution (unilateral initially progressing to bilateral symptoms later on) Positive Response to DA replacement Advanced PD... What is considered Advanced? Differential DX (Jankovic 2003; Pal et al., 2002) Rating Parkinson Disease Severity Modified Hoehn and Yahr Scale STAGE 0 = No signs of disease. STAGE 1 = Unilateral disease. STAGE 1.5 = Unilateral plus axial involvement. STAGE 2 = Bilateral disease, without impairment of balance. STAGE 2.5 = Mild bilateral disease, with recovery on pull test. STAGE 3 = Mild to moderate bilateral disease; some postural instability; physically independent. STAGE 4 = Severe disability; still able to walk or stand unassisted. STAGE 5 = Wheelchair bound or bedridden unless aided. Goetz CG, Poewe W, Rascol O, et al. Movement Disorder Society Task Force report on the Hoehn and Yahr staging scale: status and recommendations. Mov Disord. 2004;19(9): Additional Description of Advanced PD Onset of motor complications, despite aggressive pharmacological and behavioral managements. Motor Complications Wearing Off On-Off Fluctuations Dyskinesias Drug failure response Giugni & Okun, 2014; Varanese et al, 2010 Motor characteristics of Advanced PD Increased severity of bradykinesia, hypokinesia, & rigidity, akinesia/freezing Difficulty walking; bedridden, wheelchair Not able to live alone, increased falls (TBI risk) Assistance needed with all daily activities; greater need for assistive devices/aids Worsening of posture Non-motor characteristics of Advanced PD Dementia and increase neuropsychological changes (slow processing, attention, etc.) Psychosis and hallucinations Depression, Anxiety, and Apathy Sleep Disorders Autonomic Dysfunction Pain Giugni & Okun, 2014; Varanese et al, 2010 Giugni & Okun, 2014; Varanese et al, 2010 Copyright 2018, LSVT Global Inc. 2

4 Speech characteristics of Advanced PD These motor and non motor complications, may dramatically impair quality of life Early speech/voice dysfunction 78% - Reduced loudness, monoloudness - Monotone - Hoarse, harsh, breathy voice quality Individuals perceived as bored, disinterested, apathetic (Aronson, 1990; Harel et al, 2004; Little, et al, 2008; Ruiz et al., 2011; Skodda, et al, 2009; Stewart et al, 1995) Later symptoms - Imprecise articulation - Vocal tremor, rate (Darley et al, 1969a; 1969b; 1975; Logemann et al, 1978; Cherney et al., 1988) Speech characteristics of Advanced PD Repetitive speech phenomena Dysfluent speech- stuttering like (initiation difficulties, inappropriate silences) Hyperfluent palailalia (compulsive, effortless repetition of words and phrases, against a background of increasing rate and loudness; word and phrase repetitions tend to occur at the end of an utterance) Increased time for processing information and responding Potential Secondary Impairments Cardiovascular Deconditioning Loss of muscular strength/weakness Fixed postural deformities Pain Loss of normal range of motion Impaired balance Aspiration Benke, Hohenstein, Poewe, & Butterworth, 2000; Duffy, 2005; What makes Atypical Parkinsonisms different from Idiopathic PD? Have one of more features similar to PD (rigidity, bradykinesia, tremor, postural instability) Have added symptoms not seen in PD ( Parkinson s Plus ) Disease course and underlying pathology differs from PD They do not respond well or in the same way to anti-parkinson medications Can be difficult to distinguish from PD initially Most Common Atypical Parkinsonisms PSP Progressive Supranuclear Palsy MSA Multiple System Atrophy CBD Corticobasal Degeneration LBD Lewy Body Dementia FTD Frontotemporal Degeneration Copyright 2018, LSVT Global Inc. 3

5 What Causes Atypical Parkinsonism? Alpha-synucleinopathies & Tauopathies Alpha-synuclein is the primary structural component of Lewy bodies, as seen in: -- PD -- MSA -- Lewy Body Dementia Tau proteins help support and stabilize the skeleton of brain cells in the CNS When there is a defect in the tau, they accumulate abnormally and produce neurofibrillary tangles, as seen in: -- PSP -- Alzheimer s -- CBD -- FTD Incidence and Prevalence Very rare but frequently misdiagnosed as PD Rates vary from 1-6 per 100,000 except for LBD at 400 per 100,000 Life expectancy Rates vary from 5 10 years Hospitalizations generally due to: UTIs Aspiration pneumonia Falls Levin et al, 2016 Progressive Supranuclear Palsy (PSP) Remember FIGS to help with differentiating PSP from PD F = Frequent, sudden falls early in disease course generally posteriorly I = Ineffective Medication anti-pd medications are not particularly helpful G = Gaze Palsy vertical loss (downward first) S = Speech & Swallow Changes Progressive Supranuclear Palsy (PSP) Remember FIGS to help with differentiating PSP from PD F = Frequent, sudden falls early in disease course generally posteriorly I = Ineffective Medication anti-pd medications are not particularly helpful G = Gaze Palsy vertical loss (downward first) S = Speech & Swallow Changes Multiple System Atrophy (MSA) 1. MSA-P (parkinsonian): Striatonigral degeneration implies parkinsonism with some degree of cerebellar dysfunction. Slow, stiff movements 2. MSA-A (autonomic): Shy-Drager syndrome reflects a predominance of autonomic failure. Orthostatic hypotension, constipation, urinary incontinence 3. MSA-C (cerebellar): Olivopontocerebellar atrophy indicates primarily cerebellar defects with minor degrees of parkinsonism. Ataxia, balance, coordination, gait, and speech Also common is frontal-executive dysfunction. Memory and visual spatial functions can also be impaired. Corticobasal Degeneration (CBD) Remember CIAO to help with differentiating CBD from PD C = Cognitive changes mild early on and can progress to dementia I = Ineffective Medication anti-pd medications are not particularly helpful A = Asymmetrical Presentation & Apraxia (inability to perform coordinated movements or use familiar objects) alien-limb phenomenon O = Odd movements or feelings slowness, stiffness, shakiness, clumsiness Copyright 2018, LSVT Global Inc. 4

6 Lewy Body Dementia Progressive cognitive decline within 12 months of onset of parkinsonism Two of the core features Fluctuating cognition Visual hallucinations Parkinsonism One core and one suggestive feature McKeith, et al. Third report of DLB consortium. Neurology 2005; 65:1863 Often with rapid progression of posture changes generally trunk flexion and/or lateral flexion Frontotemporal Degeneration The hallmark of FTD is a gradual, progressive decline in behavior and/or language (with memory usually relatively preserved). As the disease progresses, it becomes increasingly difficult for people to plan or organize activities, behave appropriately in social or work settings, interact with others, and care for oneself, resulting in increasing dependency on caregivers. Generally occurs in people in their 50s & 60s Nonfluent/agrammatic primary progressive aphasia (nappa) variant of FTD is associated with PSP and CBD reduced speech fluency (140 words per min is norm) wpm related to grammatical difficulty deficit in grammatical comprehension General Points to Remember The atypicals PDisms are not managed well with medication or surgical treatment like in PD Symptoms and presentations can vary greatly Compensatory strategies may need to be implemented earlier (vs. restorative treatment methods used in idiopathic PD) Rehab focus in both Advanced PD (H&Y 4 to 5) and Atypical PD Maintain or improve physical capacity: Vocal loudness Bigness of movements Voice quality Quality of movement Pitch range Posture Speech intelligibility Balance Range or motion and strength Maintain vital functions: swallowing and moving safely Functional communication and movement to improve and maintain function, enhance safety and reduce caregiver burden Use of external cueing or augmentation (care team) Multi-disciplinary team is key! Medical Team Neurologist Neurosurgeon General practice physician Nurses CNP/PA in Neurology Physiatrist Pharmacist Allied Team Speech therapists Physical therapists Occupational therapists Clinical neuropsychologist Social workers Nutritionist LSVT BIG Adaptations and Considerations Behavioral intervention is the most EFFECTIVE therapy for improving communication and function! Copyright 2018, LSVT Global Inc. 5

7 Delivery Certified LSVT BIG Physical/Occupational Therapist 1:1 intervention Time of Practice 4 consecutive days per week for 4 weeks 16 sessions in one month 60 minute sessions Daily carryover assignments (30 days/entire month) Daily homework (30 days/entire month) LSVT BIG Treatment Session Maximal Daily Exercises 1.Floor to Ceiling 2.Side to Side 3.Forward step 4.Sideways step 5.Backward step 6.Forward Rock and Reach 7.Sideways Rock and Reach BIG Walking with device and help may be with w/c Functional Component Tasks 5 EVERYDAY TASKS 5 reps each For example: - Sit-to-Stand - Reaching for a drink - Pull up covers Hierarchy Tasks Patient identified tasks: Getting out of bed to use commode Transferring from w/c to toilet In and out of a car Build complexity across 4 weeks of treatment towards long-term goal Video Example of Standard Exercise Can these exercises be adapted? YES!! Video Example of Seated Adaptation Video Example of Supine Adaptation Copyright 2018, LSVT Global Inc. 6

8 Physical Challenges What are some common adaptations used in LSVT BIG? Balance- Use physical support in standing as needed or perform exercises in sitting or supine when needed Endurance- reduce repetitions and scale intensity as needed Use assistive or adaptive devices as needed (walking devices, raised toilets, higher chairs, etc.) Take care to limit exacerbating orthostatic hypotension Early caregiver training when physical assistance is needed or WILL be needed. Learn proactively! Cognitive and Non-Motor Challenges Simple and redundant cueing along with modeling facilitates motor learning and retention. BIG and LOUD can be learned by almost anyone! Intensity of dosage is key in producing meaningful and more lasting changes. May even need more than 16 sessions. Early caregiver training when carryover of function to home and homework is challenging. Goal of LSVT BIG with Advanced or Atypical PD: It s all about FUNCTION! Cued BIG Functional Movement Reduces caregiver burden Improves safety and independence Improved quality of life and self efficacy Daily Exercises Vital Keep it BIG every day! May need to customize for practical implementation Team support is needed Use the Homework Helper DVD! Handwriting Pre/Post Uncued Whales live in the blue ocean Handwriting Cued BIG PRE POST PRE POST Copyright 2018, LSVT Global Inc. 7

9 Functional Task Specific Training in LSVT BIG- More than just exercise! Translation of larger, better quality movements trained in functional tasks which are relevant to the individual. May need family input to choose the tasks that are most meaningful to the patient Functional Task Examples Sit to stand from toilet, bed, recliner, dining room chair, wheelchair Turning in bed and getting in/out of bed Getting in/out of tub or shower Dressing, even if partial Eating (e.g. Fork or cup to mouth) Standing to brush teeth/wash hands Short distance walking BIG Walking Environment and distance tailored to each person s abilities and goals Should perform or replicate the individual s own walking scenarios, e.g., walking in small home Strategies to help freezing of gait should be included Use assistive device as needed (walker, cane, wheelchair, etc.) Allow sufficient time for slower cognitive processing and response. Keep it simple! May need more frequent cues to Think BIG and Keep it BIG LSVT BIG Homework! Daily Carryover Assignments Exercise practice at home With coach/caregiver as needed With LSVT BIG Homework Helper videos 1-2 times per day After LSVT BIG Daily LSVT BIG exercise practice at home Once a day forever!! With coach/caregiver With LSVT BIG Homework Helper videos Volume 1 : Standard and Standing with Support Volume 2 : Adapted to Sitting and Supine + bonus chapter for caregivers In a group BIG for LIFE! Tune-Ups : ask your LSVT BIG PT or OT- every 3-6 months average There is HOPE! Don t discount therapy just because the disease is advanced or it is an atypical PD People with advanced PD and atypical PD can have amazing outcomes! FUNCTIONAL communication and movement of any kind can dramatically improve quality of life (even if supplementation is required) Copyright 2018, LSVT Global Inc. 8

10 Here are some activities that I had avoided but which are now part of my routine again: getting up from a low couch, getting into and out of my car (which is low to the ground), putting bills into my wallet, retrieving my cell phone from a pants pocket and putting it back, properly donning a sports jacket, buttoning a shirt. All in four weeks! - Ralph F. Summary LSVT BIG is applicable to all stages of PD and can be customized to each patient s needs and treatment settings LSVT BIG can increase independence, speed, quality and/or safety with communication, mobility and ADLs Restore Function! Improve Function! Maintain Function! Atypical and Advanced PD carry unique challenges requiring creative solutions and increased caregiver involvement How to Ask Questions 1. Type in the question box on your control panel 2. Raise your hand! (click on the hand icon in your control panel) Your name will be called out Your mic will be unmuted, then you can ask your question out loud. 3. info@lsvtglobal.com if you think of questions later! How Do I Locate LSVT Certified Clinicians? Find LSVT Clinicians 3. Search Options LSVT LOUD (Speech Therapy) LSVT BIG (Physical Therapy & Occupational Therapy) 4. Enter your location (city & state or zip code) 5. Click on I agree to the terms and conditions Then-Ask your doctor for a referral to one of these clinicians! LSVT Resources for You! Patient (public) webinars- live and on demand LSVT BIG and LSVT LOUD seminars LSVT BIG and LSVT LOUD Homework Helper DVDs Volume 1: Standard and Unilateral Support; Functional Components, BIG walking, progression ideas. English and German Available on DVD; download; or 1 year streaming ($15) Volume 2: Seated and Supine; Caregiver Chapter BIG for LIFE and LOUD for LIFE Groups contact info@lsvtglobal.com or search the directory Ask the Expert! Info@lsvtglobal.com Questions? webinars@lsvtglobal.com Please complete the survey! Copyright 2018, LSVT Global Inc. 9

11 Related Organizations Cure PSP MSA Coallition The Association for Frontotemporal Degeneration The Lewy Body Dementia Association The Alzheimer s Association Where are Other Places One Can Learn More About PD? Parkinson s Foundation: American Parkinson s Disease Foundation Michael J. Fox Foundation Davis Phinney Foundation World Parkinson Coalition Copyright 2018, LSVT Global Inc. 10