🏅Your Path to Certification
Earn your way up three evidence-based tiers. Each builds on the last. Finish all three and receive your Certified Prepared Patient · Parkinson's Disease badge and printable certificate, recognized across the FFH Network.
Aware · Identity: Self-Advocate
You know your body and your condition. Layer 1 — Condition Literacy.
- Complete Modules 1–4 (Condition Literacy)
- Pass the "What PD Is" quiz (≥80%)
- Identify your Hoehn & Yahr stage, your MDS-UPDRS scores (Parts I–IV), your medication regimen with med-meal timing, your prodromal-watch awareness (RBD, hyposmia, constipation, mood, micrographia), and your relationship to LSVT BIG / LSVT LOUD / Rock Steady / Dance for PD
- Build your on/off diary (30-min windows) + falls log + RBD episode log + PHQ-9 / GAD-7 + orthostatic-BP log
Active · Identity: Care Team Member
You partner with your team and navigate the system. Layer 2 — Care & System Literacy.
- Complete Modules 5–7 (Self-Monitoring · When to Call vs ED · Comorbidity Awareness)
- Demonstrate teach-back on your med-meal timing, the impulse-control-disorder warning if on a DA agonist, the absolute rule of never stopping dopamine meds abruptly, and your "when to call vs ED" decision rule
- Complete one "great visit" prep + debrief with a Movement-Disorder Neurologist
- Establish PT (LSVT BIG-trained) + OT + SLP (LSVT LOUD-trained) referrals; baseline neuropsychology / MoCA; sleep-medicine eval if RBD or daytime sleepiness
- Successfully resolve one prior auth (e.g., for Inbrija / Rytary / Gocovri / Nuplazid / DBS / Duopa / Vyalev / focused ultrasound), copay-help application, or VA Agent-Orange presumptive-eligibility application if veteran
Certified Prepared Patient · Identity: Ambassador
You teach, mentor, fight stigma, and shape research & policy. Layer 3 — Advocacy & Ambassadorship.
- Complete Modules 8–10 (Family & Care Team · Talk to Kids/Partner/Employer + Mentor · Mastery & Graduation)
- Mentor 1 newly-diagnosed person or family via Parkinson's Foundation / APDA / MJFF Patient Council / Davis Phinney / PMD Alliance / PD Avengers OR present at a faith-community / employer / school / support-group education session
- Sign the Prepared Patient Pledge
- Complete a written advance care plan for advanced PD (code status, feeding-tube preference, hospice criteria) and a caregiver-wellness plan for your Ambassador
- Submit one advocacy action (story, Moving Day walk, state-level PD-policy comment, telehealth-parity advocacy, Movement-Disorder Neurology workforce expansion, VA Agent-Orange presumption awareness, RBD-prodromal-recognition outreach)
📋Master Pre / Post Assessment
Where You Stand — Confidence Before & After
Seven dimensions of being a Prepared Patient. Answer once at the start of your journey and again at the end. Your goal is to see real growth across understanding, self-management, communication, and optimal utilization — knowing when to call your team, when an issue can wait for clinic, and when to go to the ER. Your answers stay on this device unless you choose to share with your clinician.
📈 Your Pre→Post Growth
📞Know Who to Call — Movement-Disorder Neurology First, ED for Red Flags
Parkinson's care runs as a long arc — diagnosis, honeymoon (often years of good response to levodopa), motor fluctuations and on/off, advanced therapy decisions, and the non-motor years. Most days are routine. Some days bring med-adjustment calls. A few bring red flags. Knowing the right number to call — your Movement-Disorder Neurology team, your PCP, the Parkinson's Foundation Helpline, or 911 / ED — saves time, dignity, and life. Save these numbers in your phone today. The numbers below are placeholders — your institution will fill in the right ones for you.
🚑 Go to the ED right away for any of these
Sudden discontinuation of dopamine replacement (NMS-like syndrome — fever, rigidity, altered mental status — NEVER stop dopamine meds abruptly) · fall with head injury or suspected fracture · new dysphagia with aspiration / choking · severe orthostasis with syncope or repeated near-syncope · severe acute psychosis or agitation that can't be safely managed at home · active suicidal intent or attempt (988 or 911 / ED) · any acute neurological change different from your usual PD (stroke-like onset, focal weakness, severe headache — BE-FAST). When in doubt, go.
🧭 Same-day call to Movement-Disorder Neurology — most things are addressable in clinic, not the ED
For severe dyskinesia (often a med adjustment), new hallucinations (often a DA-agonist effect or PD dementia — treated with quetiapine / clozapine / pimavanserin; NEVER haloperidol or first-generation antipsychotics), multiple falls or freezing-of-gait causing falls, impulse-control concerns if on a DA agonist (gambling, hypersexuality, compulsive shopping, binge eating — taper the agonist), new dysphagia (SLP eval), worsening on/off fluctuations, or severe orthostasis, call your [Movement-Disorder Neurology line: (555) 123-4567]. Most issues are addressable in clinic — and the ED rarely understands PD med-meal timing the way your team does.
💬 Routine questions, refills, scheduling, peer support
Use [MyChart portal] first — most messages answered within 1 business day. For levodopa / DA-agonist / MAO-B / COMT / amantadine refills or copay help, call [Pharmacy: (555) 222-9050]. For peer mentoring, family support, navigation, and treatment-locator help, call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) — free, real humans, weekdays. For young-onset PD: PD Avengers · MJFF Patient Council · Brian Grant Foundation. For African American / Latino / LGBTQ+ / rural communities: PMD Alliance and Parkinson's Foundation chapters offer culturally-affirming groups. Davis Phinney "Every Victory Counts" manual is the gold-standard self-management workbook (free).
🆘 Mood crisis · suicidal thoughts → 988 (call or text)
Depression and anxiety affect 30–50% of people with PD. Any thoughts of wanting to die or hurt yourself = call or text 988 (Suicide & Crisis Lifeline · free, confidential, 24/7). Active risk → 911 / ED. Veterans: 988 then press 1. Crisis Text Line: text HOME to 741741. Asking about suicide does not plant the idea. Some SSRIs are PD-friendly (sertraline, escitalopram); avoid amitriptyline and other anticholinergics — they worsen cognition. Ask your team.
📚Condition Literacy & the 10 Prepared Patient Competencies
A Prepared Patient builds three kinds of health literacy — and grows into three identities. Each competency works through the FFH three pillars: Learn It · Live It · Share It.
Advocate for Self
You speak up for your own care, plan, pain, and goals.
Care Team Member
You partner with your team — not above, not below.
Ambassador
You teach, mentor, and shape research, policy & access.
🧬 Condition Literacy Learn It · Tier 1 Aware
"I know my body and my disease." The foundation. Without this, nothing else holds.
What PD Is
A progressive neurodegenerative disorder of substantia nigra dopamine neurons with alpha-synuclein / Lewy body pathology. Cardinal motor signs TRAP — Tremor (at rest), Rigidity, Akinesia/bradykinesia, Postural instability. The non-motor PD ecosystem (sleep, smell, gut, mood, cognition, autonomic) is often more disabling than the motor signs. Hoehn & Yahr stages 1–5. What PD is NOT: essential tremor (action tremor), drug-induced parkinsonism, vascular parkinsonism, atypical parkinsonisms (MSA / PSP / CBD).
Know My Numbers & Risk Factors
Your central dashboard: Hoehn & Yahr stage, MDS-UPDRS Parts I–IV, MoCA cognitive baseline + serial. On/off diary in 30-min windows. Risks: family history (LRRK2 — Ashkenazi Jewish + Berber; GBA — Ashkenazi, faster cognitive decline; PARK7, PINK1, parkin recessive young-onset), age, male sex, head trauma, pesticide exposure (paraquat, rotenone), agricultural well water, MPTP. Veterans + Agent Orange = presumptive VA service-connection. Prodromal markers (RBD, hyposmia, constipation, mood, micrographia).
Lifestyle Force Field — Exercise as Disease-Modifying Medicine
Vigorous aerobic exercise at 80–85% max heart rate, 30 min, 3–4×/week — slows motor progression per SPARX, PD-Active, Park-in-Shape RCTs and the Parkinson's Outcomes Project. LSVT BIG (PT, 4 weeks, 4 days/week, intensive amplitude). LSVT LOUD (SLP, voice). Dance for PD, Rock Steady Boxing, tai chi (RCT-proven fall reduction). MIND/Mediterranean diet. Sleep hygiene with RBD-specific bedroom safety (padded headboard, mattress on floor / guard rails, partner safety). Constipation management (hydration, fiber, exercise; avoid loperamide and anticholinergics).
Medications — Levodopa, DA Agonists (with ICD warning), MAO-B/COMT, Advanced Therapies
Levodopa-carbidopa = gold standard since the 1960s; do NOT save it for later; take 30–60 min before meals (protein interferes). Formulations: IR (Sinemet), CR, ODT, ER (Rytary), inhaled (Inbrija) for off rescue, intestinal gel (Duopa), SC infusion (Vyalev). Dopamine agonists (pramipexole, ropinirole, rotigotine, apomorphine) — HONEST WARNING: 15–20% develop impulse-control disorders (gambling, hypersexuality, compulsive shopping, binge eating). Tell family BEFORE starting. NEVER stop dopamine meds abruptly — NMS-like syndrome. Avoid metoclopramide, prochlorperazine, haloperidol. Advanced: DBS, Duopa, Vyalev, focused ultrasound.
🤝 Care & System Literacy Live It · Tier 2 Active
"I'm part of the team. I navigate the system." Where most preventable ED visits, decompensation crises, and frustration happen — and where this course pays off the most. Optimal utilization lives here.
Self-Monitoring — On/Off Diary, Falls, Sleep, Mood, Cognition, Orthostatic BPs
The 2–3 day on/off diary in 30-min windows before each visit. Falls + near-falls log. Sleep + RBD episode log. Mood (PHQ-9, GAD-7). Cognition (MoCA serial trends). Med-meal timing log. ICD self-screen weekly if on DA agonist. Orthostatic BPs at home (lying, sitting, standing × 3 min). Personal KinetiGraph wearable, mPower app, Fox Insight enrollment, constipation tracking. The "what changed in the last 6 months" question.
When to Call vs Go to ED — Sudden DA Stoppage = ED
NEVER stop dopamine meds abruptly → if it happens (missed doses, hospital error) → ED (NMS-like syndrome — fever, rigidity, AMS). Falls with injury → ED. Severe dyskinesia / new hallucinations / freezing causing falls / impulse-control concerns / new dysphagia / severe orthostasis → same-day call to Movement-Disorder Neurology. Mood crisis or suicidal thoughts → 988 (call or text). New anosmia + objective signs in a family member with prodromal pattern → MD-Neurology consult, not ED.
Comorbidity Awareness — The Non-Motor PD Ecosystem
PD-specific Module 7. The non-motor PD ecosystem: depression / anxiety 30–50% (cross-references the FFH Depression + Anxiety courses; 988 surfaced); PD dementia ~30–40% of long-survivors (rivastigmine FDA-approved); RBD + sleep fragmentation + EDS (sleep medicine matters); orthostatic hypotension (droxidopa / midodrine); urinary urgency (mirabegron OK, avoid anticholinergics); sexual changes; constipation (affects levodopa absorption); falls; pain (under-recognized). Vascular comorbidities matter — vascular parkinsonism mimics PD; HTN/T2D/OSA may amplify symptoms (cluster md5 7587a559b24ca8b9bab40b1756475d84 — cross-referenced, NOT embedded).
📣 Advocacy & Ambassadorship Share It · Tier 3 Certified
"I speak up. I lift others. I shape the future." This is what turns a Prepared Patient into a force multiplier for the whole community.
Family, Caregiver, and the Care Team — Bed-Partner Ambassador for RBD
The long-arc partnership. The bed-partner Ambassador role for RBD recognition (in patient AND in spouse / sibling / adult children — RBD often precedes PD by years; recognition is high-leverage public health). The on/off observer role. Fall-prevention partner. Med-timing supporter. Watches for hallucinations, ICD if on DA agonist, PD dementia trajectory. Advance care planning for advanced PD: code status, feeding-tube preferences, hospice criteria. Care-partner mental health is high-risk — depression and anxiety are common; respite via Parkinson's Foundation chapters and APDA matters.
Sharing — Talk to Kids, Partner, Employer; Prodromal Recognition Ambassador
Kids: plain language — "Dad's brain makes less dopamine; medicine helps; we're a team." Partner / family: bed-partner Ambassador for RBD recognition (high-leverage public health). Employer / school: ADA covers PD; reasonable accommodations (scheduling around med peaks/troughs, voice software, ergonomic workspace); FMLA covers DBS surgery + recovery, intensive PT/OT/SLP courses; SSDI achievable at H&Y 3+. Peer-mentor track via Parkinson's Foundation, MJFF Patient Council, APDA, Davis Phinney, PMD Alliance, Brian Grant Foundation, PD Avengers (young-onset). The Davis Phinney "Every Victory Counts" manual.
Mastery & Graduation — Sustained Engagement, Peer Mentor, Long-Arc Identity
Sustained engagement: exercise stack, med-meal timing, on/off diary, falls vigilance, mood + cognition self-monitoring. Peer mentorship via Parkinson's Foundation / APDA / MJFF / Davis Phinney / PMD Alliance / PD Avengers. Advance care planning for advanced PD. Advocacy: state-level PD policies, research funding, Movement-Disorder Neurology workforce expansion, telehealth parity, Agent Orange / VA presumption awareness. Long-arc identity: PD is a long disease; you are a Prepared Patient for life. Earn Certified Prepared Patient · Parkinson's Disease.
👥My Care Team
Your team is bigger than just the doctor — and the care partner is part of it. Click any card to edit, or click the + tile to add a new team member. Saved on this device. The Force Field Emergency Card below auto-syncs from this list. Starter roster pre-populated for Parkinson's Disease — your institution can edit any row. The Force Field Emergency Card auto-syncs from this list and surfaces the Parkinson's Foundation Helpline + the Aware in Care kit + the "NEVER" list.
📖Glossary — words you'll hear
Plain-English definitions for terms doctors and labs use. Tap to expand.
Bradykinesia
Dyskinesia (vs tremor)
On time / Off time
Wearing-off
Freezing of gait (FOG)
Festination
Rigidity (cogwheel vs lead-pipe)
DBS (Deep Brain Stimulation)
Impulse-Control Disorder (ICD)
Lewy body / alpha-synuclein
RBD (REM Sleep Behavior Disorder)
Hyposmia / anosmia
MDS-UPDRS (Movement Disorder Society Unified Parkinson's Disease Rating Scale)
Hoehn & Yahr stage
🧪Screen & Lab Tutor — your MDS-UPDRS, MoCA, and what your PD workup means
Screen & Lab Tutor — your MDS-UPDRS, MoCA, and what your PD workup means
In Parkinson's, the most important "labs" are your MDS-UPDRS scores (Parts I–IV), your Hoehn & Yahr stage, and your MoCA cognitive baseline + serial. Plus a baseline workup to rule out structural / vascular / metabolic mimics, and ongoing monitoring keyed to your medications and comorbidities. Your "normal" may be different from a friend's. Ask your team to write your personal baseline in the column on the right.
| Test / Screen | What it measures | Typical adult range | What to ask if it's off | My baseline |
|---|---|---|---|---|
| MDS-UPDRS Parts I–IV | The standard PD severity scale. Part I non-motor experiences; Part II motor experiences of daily living; Part III motor exam (clinician); Part IV motor complications (off time, dyskinesia). Trend matters more than any single score. | Lower scores = milder disease; tracked over time | What are my Part I–IV scores? Are they trending? Which area should we focus on? | [fill in] |
| Hoehn & Yahr stage | Simple PD staging: 1 unilateral · 2 bilateral, no balance issues · 3 mild balance impairment · 4 severe but stands/walks · 5 wheelchair/bed unless aided. | 1–5; rate of progression varies enormously | What's my current H&Y stage? Has it changed since last visit? | [fill in] |
| MoCA cognitive screen | Montreal Cognitive Assessment — 30-point screen. Used at baseline and serially. PD-MCI and PDD detection. Trend matters more than any single score. | ≥26 = normal · 18–25 MCI range · <18 likely dementia (rough guide) | What's my MoCA? Is it trending? Should we get a neuropsych eval? | [fill in] |
| DaT-SPECT imaging | Dopamine transporter imaging — confirms presynaptic dopamine deficit. Useful when diagnosis is uncertain (e.g., differentiating PD from essential tremor or drug-induced parkinsonism). Not needed in clinically obvious PD. | Reduced striatal uptake (asymmetric) = PD-pattern | If my diagnosis is uncertain — would DaT-SPECT help confirm? | [fill in] |
| Brain MRI | Rules out structural mimics (tumor, stroke, normal pressure hydrocephalus, vascular parkinsonism). Atypical features may show specific patterns (PSP — "hummingbird" sign; MSA — "hot cross bun" sign). | Generally normal in idiopathic PD | Has my MRI been done? Were any structural findings noted? | [fill in] |
| PHQ-9 / GAD-7 | Mood + anxiety screens. Depression/anxiety affect 30–50% of PD patients. PHQ-9 0–27, GAD-7 0–21. Track monthly. | PHQ-9 <5 minimal · GAD-7 <5 minimal | Should we add a PD-friendly SSRI (sertraline, escitalopram)? AVOID amitriptyline (anticholinergic). | [fill in] |
| Orthostatic BP measurement | Lying, sitting, standing × 3 minutes. Orthostatic hypotension is common in PD, worsened by dopamine meds, and a fall risk. Drop ≥20 systolic or ≥10 diastolic = orthostatic. | Drop <20/10 mmHg from supine to standing | Should we add hydration / salt / compression stockings / droxidopa / midodrine? | [fill in] |
| LRRK2 / GBA genetic panel (if appropriate) | Genetic counseling for early-onset (<50), strong family history, or Ashkenazi Jewish / Berber heritage. LRRK2 autosomal dominant; GBA faster cognitive decline; SNCA rare/severe; recessive young-onset PARK7/PINK1/parkin. | Negative panel doesn't rule out PD | Should I be referred for genetic counseling? Are there family members at prodromal risk? | [fill in] |
| Polysomnography (sleep study) with REM atonia analysis | Confirms RBD (REM Sleep Behavior Disorder — high-specificity prodromal marker). Also evaluates OSA (common; sleep medicine matters). Done in a sleep lab or with home sleep testing. | Loss of REM atonia + dream enactment = RBD | If I act out dreams or my partner reports thrashing — should we get a sleep study? | [fill in] |
| Bone density (DEXA) | Long-arc fall + fracture risk in PD. Combined with falls, PD bone density tends to be lower; vitamin D + calcium + weight-bearing exercise + bisphosphonates if osteoporotic. | T-score > -1.0 normal · -1.0 to -2.5 osteopenia · < -2.5 osteoporosis | When was my last DEXA? Am I on adequate vitamin D / calcium / treatment? | [fill in] |
| Vitamin D / B12 / TSH (rule out mimics, monitor) | Vitamin D deficiency contributes to bone loss; B12 deficiency can cause neuropathy and cognitive symptoms; thyroid dysfunction can mimic or amplify symptoms. | Vit D >30 ng/mL · B12 >200 pg/mL · TSH 0.4–4.0 mIU/L | Are these in range? Any need to supplement? | [fill in] |
| Med list with PD-aware review | AVOID metoclopramide and prochlorperazine (dopamine blockers — worsen PD; use ondansetron or trimethobenzamide for nausea). AVOID haloperidol and 1st-gen antipsychotics (only quetiapine, clozapine, pimavanserin OK for PD psychosis). AVOID amitriptyline and other anticholinergics (worsen cognition). AVOID anticholinergic bladder agents (oxybutynin, tolterodine — use mirabegron). NEVER stop dopamine meds abruptly. | Med-by-med review with PD-aware pharmacist or prescriber | Are any of my meds on the "avoid in PD" list? How do I taper if stopping a DA agonist? | [fill in] |
➕Add-On Modules & Earnable Badges
Stackable modules that match your situation. Complete one to earn an extra badge on your certificate. Your institution can add their own.
📋 On/Off Diary (30-min Windows × 2–3 Days)
The single highest-yield clinic-prep tool. Mark on, off, dyskinesia, sleep, food, and med doses in 30-min windows for 2–3 days before each Movement-Disorder Neurology visit. Plot trends. Bring it to every visit.
🚨 Aware in Care Hospital Safety Kit
Free kit from the Parkinson's Foundation: ID bracelet, magnet for fridge, the "NEVER" list (no haloperidol/Reglan/Compazine; never stop dopamine meds abruptly), med list template. Order before any planned hospitalization. Travel with it.
🏋️ Vigorous Aerobic Exercise Prescription (SPARX-style)
30 min at 80–85% max heart rate, 3–4×/week. Treadmill, cycling, rowing, intervals. RCT evidence (SPARX, PD-Active, Park-in-Shape) for slowing motor progression. Get PT clearance.
💪 LSVT BIG Referral (PT)
4-week, 4 days/week, 60-min intensive amplitude-based PT protocol — strong PD-specific evidence. Refer EARLY, not late. Find an LSVT BIG-trained PT at lsvtglobal.com.
🗣️ LSVT LOUD Referral (SLP)
The voice analog of LSVT BIG — same 4-week intensive protocol, delivered by LSVT LOUD-trained SLP. Improves voice volume + speech intelligibility. Refer EARLY.
🥊 Rock Steady Boxing / Dance for PD / Tai Chi
Non-contact boxing, tango / ballroom dance, and tai chi (RCT-proven fall reduction) — all add motor + balance + community benefit. Find a class near you via Parkinson's Foundation.
🛏️ RBD-Specific Bedroom Safety
If you act out dreams: padded headboard, mattress on the floor or with rails, partner safety (sleep separately if violent episodes), remove sharp objects from bedside. Polysomnography to confirm RBD. Melatonin 3–18 mg or low-dose clonazepam (with team).
🚽 Daily Constipation Routine
Hydration + fiber (or psyllium) + daily exercise + senna or PEG (Miralax) as needed. Avoid loperamide and anticholinergics (worsen cognition). Constipation worsens levodopa absorption.
📊 Personal KinetiGraph (PKG) Wearable
Clinically-validated 6-day wrist-worn data recorder — captures bradykinesia, dyskinesia, tremor, immobility patterns. Generates a report your Movement-Disorder Neurologist can use to fine-tune your regimen.
📱 mPower App + Fox Insight Enrollment
mPower (Apple) — patient-driven PD assessments. Fox Insight (free, online) — MJFF longitudinal study; your data accelerates research. PPMI for biomarker studies.
⚡ DBS / Duopa / Vyalev / Focused Ultrasound Decision Workshop
When motor fluctuations limit life and meds aren't enough. DBS (STN or GPi) · Duopa (intestinal gel) · Vyalev (SC infusion) · MR-guided focused ultrasound for tremor or dyskinesia. Eligibility, expectations, and prep.
👨👩👧 Bed-Partner Ambassador for RBD Recognition
The high-leverage public-health Ambassador role. Recognize RBD in the patient (and bedroom safety) AND in family members at prodromal risk (spouse, sibling, adult children). Hyposmia + RBD + persistent constipation + mood change in family = MD-Neurology consult.
🇺🇸 Veterans + Agent Orange / Camp Lejeune VA Claim
PD is a presumptive service-connected condition for Vietnam-era veterans exposed to Agent Orange and for Camp Lejeune veterans. VA disability + care eligibility apply. File the claim — it is not automatic.
🧪 In a PD Clinical Trial?
Protocol literacy, side-effect tracking, when to call the study coordinator vs your usual MD-Neurology team. Trials currently enrolling in alpha-synuclein-targeted therapies, GBA-targeted therapies, LRRK2 inhibitors, novel infusion levodopas, MR-guided focused ultrasound. Search ClinicalTrials.gov + Fox Trial Finder.
+ Add Your Institution's Module
Drop in your own — local Parkinson's Foundation chapter, APDA chapter, support-group, faith-community partnership, employer wellness program, school neurology rotation, anything.
🛡️Force Field Emergency Card
🛡️ Force Field Emergency Card FRIDGE · WALLET · EMT-READY
A one-page emergency record for any EMT, ER, new doctor, or transition visit. Print one for the fridge, one for your wallet. Updates anytime. This is the document you hand to a stranger when you can't speak for yourself. Pair with the Parkinson's Foundation Aware in Care hospital safety kit.
🤝 My Care Team — call list for any clinician picking up my care
📘My Health Passport
📘 My Health Passport PATIENT-OWNED JOURNAL
This is your record — not your hospital's. Log every visit, capture every question for next time, and watch your own trends. Many of you get care at more than one hospital, on more than one record system. This Passport travels with you. Future versions will let you import data directly from your patient portals (the "Blue Button" vision).
🩺Working With a Prepared Patient · Parkinson's Disease
Your patient is going through a structured, evidence-based course. Here's how to get the most out of every visit, reduce ED utilization, support the family Ambassador (especially the bed-partner Ambassador role for RBD recognition), and partner well across the long PD arc. Built on the AHRQ SHARE Approach, IOM teach-back, alignment with the Parkinson's Foundation, MJFF, APDA, NIH NINDS, AAN PD practice guidelines, MDS Clinical Diagnostic Criteria (2015) and MDS Prodromal Criteria (2015/2019), the Parkinson's Outcomes Project, and the disease-modifying-exercise RCTs (SPARX, PD-Active, Park-in-Shape). The Parkinson's Foundation Helpline (1-800-4PD-INFO) and Aware in Care hospital safety kit are surfaced throughout.
The SHARE Approach — your 5-step playbook
Use these steps in any order. Cycle back. Use teach-back at every transition. Source: AHRQ Pub. No. 25-0005 (Oct 2024).
💬Teach-Back & Risk Communication
The two highest-yield, lowest-cost SDM techniques. Use both at every visit.
🔁 Teach-Back (1–2 min)
- "Just so I know I explained it well — what would you tell your bed-partner Ambassador about why you take levodopa 30–60 minutes before meals? About what to do if you accidentally miss a dose? About when to call me vs the ED?"
- Open-ended ("what" / "how"), not yes/no.
- If they get it wrong: "I must not have explained it well — let me try a different way." Then teach-back again.
- Use it for: med-meal timing (protein competes with levodopa); NEVER stop dopamine meds abruptly (NMS-like syndrome); impulse-control-disorder warning if on a DA agonist (the family Ambassador screens too); RBD-specific bedroom safety; the "NEVER" list (no haloperidol / 1st-gen antipsychotics; no metoclopramide / prochlorperazine; only quetiapine / clozapine / pimavanserin for PD psychosis); when to call vs ED.
- Document teach-back in your note — it's a quality measure and a billable element of care.
🔢 Communicating Numbers
- Use absolute risk, not relative. "15 to 20 of every 100" beats "15–20%" beats "fairly common" beats "low risk."
- Keep denominators & timeframes constant when comparing options.
- Show, don't tell: icon arrays, photographs of dyskinesia vs tremor, written summary.
- For MDS-UPDRS numbers: give the trend, not just the value. "Your Part III was 22 a year ago and is 26 now — that's modest progression, and the on/off diary suggests we can buy back some on time by adding a COMT inhibitor or shortening dose intervals before we discuss DBS."
⚠️Parkinson's Disease-Specific Clinical Guardrails
Diagnostic Workup & Differential
- MDS Clinical Diagnostic Criteria (2015): clinical diagnosis based on bradykinesia + at least one of resting tremor or rigidity, with supportive criteria (clear levodopa response, levodopa-induced dyskinesia, asymmetric onset, hyposmia / RBD).
- MDS Prodromal Criteria (2015/2019): assess RBD, hyposmia, constipation, mood, autonomic dysfunction, subtle motor features. Bed-partner / family Ambassador opportunity.
- Brain MRI to rule out structural / vascular mimics. DaT-SPECT when diagnostic uncertainty (e.g., differentiating PD from essential tremor, drug-induced parkinsonism, vascular parkinsonism).
- Atypical features (early severe autonomic failure → MSA; early falls + vertical gaze palsy → PSP; asymmetric apraxia → CBD): refer for atypical-parkinsonism eval. Atypicals progress faster and respond poorly to levodopa.
- Genetic counseling for early-onset (<50) or strong family history. LRRK2 (Ashkenazi, Berber); GBA (Ashkenazi, faster cognitive decline); recessive young-onset (PARK7, PINK1, parkin); SNCA (rare, severe).
- Veterans: PD is a presumptive service-connected condition for Vietnam-era Agent Orange exposure and Camp Lejeune exposure. Help patients file VA claims.
- Always ask about hallucinations, falls, RBD, ICD if on DA agonist, and orthostasis at every visit.
Evidence-Based Treatment
- Levodopa-carbidopa is the gold standard; do not delay it to spare it for later. Take 30–60 min before meals (protein competes). Formulations: IR (Sinemet), CR, ODT, ER (Rytary), inhaled (Inbrija) for off rescue, intestinal gel (Duopa via PEG-J), SC infusion (Vyalev / foslevodopa-foscarbidopa).
- Dopamine agonists (pramipexole, ropinirole, rotigotine, apomorphine SC/sublingual): useful, especially in younger patients. HONEST ICD WARNING — 15–20% develop pathological gambling, hypersexuality, compulsive shopping, binge eating, or punding. Disclose to family BEFORE starting; ask at every visit; if it occurs, taper. Less common with levodopa.
- MAO-B inhibitors (selegiline, rasagiline, safinamide) — adjunct, mild benefit. COMT inhibitors (entacapone in Stalevo, opicapone, tolcapone with hepatic monitoring) — extend on time. Amantadine — useful for tremor + dyskinesia; Gocovri ER amantadine FDA-approved for dyskinesia.
- On/off fluctuations: review on/off diary; adjust timing, split doses, add COMT/MAO-B, change to ER formulation, add on-demand rescue (Inbrija, apomorphine).
- Advanced therapies when motor fluctuations limit life: DBS (STN or GPi), Duopa, Vyalev, focused ultrasound thalamotomy / pallidotomy. Refer when meds and lifestyle are no longer enough.
- Vigorous aerobic exercise (80–85% max HR, 30 min, 3–4×/week) slows motor progression per SPARX, PD-Active, Park-in-Shape, Parkinson's Outcomes Project. Refer to LSVT BIG and LSVT LOUD early, not late. Tai chi has RCT evidence for fall reduction.
- Refer to behavioral health for the 30–50% mood-symptom prevalence. Some SSRIs are PD-friendly (sertraline, escitalopram); avoid amitriptyline and other anticholinergics (worsen cognition).
The PD "NEVER" List — Patient + EMT + ER + Anesthesia + Inpatient Nursing
- NEVER stop dopamine medications abruptly — risk of NMS-like syndrome (fever, rigidity, altered mental status). Even NPO patients need IR, ODT, Inbrija, or Vyalev.
- NEVER use metoclopramide (Reglan) or prochlorperazine (Compazine) for nausea — dopamine blockers worsen parkinsonism. Use ondansetron or trimethobenzamide.
- NEVER use haloperidol or first-generation antipsychotics. For PD psychosis: only quetiapine, clozapine, or pimavanserin (Nuplazid).
- AVOID anticholinergics (amitriptyline, oxybutynin, tolterodine, diphenhydramine for sleep) — they worsen cognition. For bladder urgency, use mirabegron.
- Order the Parkinson's Foundation Aware in Care hospital safety kit for every patient; review before any planned hospitalization or surgery.
Monitoring & Follow-Up
- MDS-UPDRS Parts I–IV + H&Y stage at every visit; on/off diary 2–3 days × 30-min windows before each visit; MoCA serial; PHQ-9 / GAD-7 monthly.
- Movement-Disorder Neurology referral for moderate-to-advanced PD or atypical features; Parkinson's Foundation Center of Excellence affiliation if accessible.
- PT (LSVT BIG-trained), OT, SLP (LSVT LOUD-trained), Neuropsychology, Sleep Medicine, Urology, Behavioral Health, Pharmacist (PD-aware), Genetic Counselor, Social Worker, Dietitian, Pastoral Care.
- Confirm vaccinations: annual flu, COVID-19, RSV, pneumococcal, shingles. Hospitalization with infection is a known PD destabilizer.
- Discuss advance care planning at appropriate stages (often H&Y 3+ or with cognitive change) — code status, feeding-tube preferences, hospice criteria, healthcare proxy.
- Caregiver wellness check: PHQ-9 for the care partner; respite via Parkinson's Foundation chapters and APDA. Care-partner depression is high-risk and well-documented.
🌍Equity, Cultural Competence & Trust
PD has well-documented access gaps across communities. African American, Latino, AAPI, Indigenous, LGBTQ+, rural, and lower-income patients have lower rates of Movement-Disorder Neurology referral, lower DBS uptake, and longer time-to-diagnosis. Veterans (Vietnam-era Agent Orange and Camp Lejeune exposure) face presumptive eligibility that is often unclaimed. Women are sometimes underdiagnosed (atypical presentation, less aggressive management). Young-Onset PD (YOPD) patients have unique work, family-planning, and identity needs. Repair starts in your office.
- Use the MDS Clinical Diagnostic Criteria + Prodromal Criteria as the standard. Don't assume PD is "just an old white man's disease." Screen broadly.
- Plain framing: PD is a long disease, not a death sentence. Exercise is medicine. The non-motor side often matters more than tremor.
- Match the messenger when possible: peer mentors via PMD Alliance, Parkinson's Foundation chapters, Davis Phinney Foundation, MJFF Patient Council, APDA, Brian Grant Foundation, PD Avengers (YOPD).
- Use qualified medical interpreters — never family, never minor children. PD conversations (especially DA-agonist ICD warnings + advance care planning) must be in the patient's primary language.
- Invite the family Ambassador in with patient consent. The bed-partner Ambassador role for RBD recognition is real medicine — and applies to family members at prodromal risk too.
- Telehealth closes rural and equity gaps for Movement-Disorder Neurology — advocate for parity coverage.
- Veterans: ask explicitly about Vietnam / Agent Orange / Camp Lejeune. PD is presumptive — file the claim.
- Mood crisis resources: 988 (call or text), 741741 (text HOME), 988 then press 1 for veterans. Asking about suicide does not plant the idea.
🏥Customize for Your Institution
Clone this course and replace the highlighted blocks with your own information. Each editable field below is a placeholder — change it once and it propagates through the patient view.
📞 What Should Replace the When-to-Call Block
- Movement-Disorder Neurology 24/7 on-call number / triage line
- Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) M–F
- APDA Information & Referral 1-800-223-2732
- PD-aware pharmacy line (levodopa formulations, Inbrija, Gocovri, Nuplazid, Vyalev)
- LSVT BIG-trained PT clinic + LSVT LOUD-trained SLP clinic referrals
- Sleep medicine + urology + behavioral health referral pathways
- VA Movement-Disorder Neurology + Agent Orange / Camp Lejeune presumption claim help
- Mood crisis: 988 (call or text) · 741741 (text HOME) · 988 then press 1 Veterans
- Patient portal login URL with Ambassador proxy
👤 Who Is Your Movement-Disorders Care Navigator?
- Name, role, photo, scheduling link.
- What teach-back / check-ins they own (on/off diary review, ICD self-screen if on DA agonist, MoCA serial trends, RBD-bedroom-safety, the "NEVER" list, Aware in Care kit, advance care planning at appropriate stages, caregiver wellness for the Ambassador).
- How patients and Ambassadors reach them between visits.
- How they handle prior-auth navigation (Inbrija, Rytary, Gocovri, Nuplazid, DBS, Duopa, Vyalev, focused ultrasound), copay help, and VA Agent-Orange / Camp-Lejeune claim assistance for veterans.
📚 Add Your Own Modules
- Your clinical trial protocols (alpha-synuclein-targeted therapies, GBA-targeted therapies, LRRK2 inhibitors, novel infusion levodopas, MR-guided focused ultrasound — link to ClinicalTrials.gov + Fox Trial Finder).
- Your DBS / Duopa / Vyalev / focused ultrasound program — eligibility, prep, expected outcomes.
- Your LSVT BIG and LSVT LOUD partner clinics + Rock Steady Boxing / Dance for PD / tai chi class lists.
- Local peer support partners (Parkinson's Foundation chapter · APDA chapter · Davis Phinney Ambassadors · MJFF Patient Council · PMD Alliance · Brian Grant Foundation · PD Avengers · faith-community partnerships).
🎨 Re-skin in 2 Lines of CSS
--inst-primary: your brand color- Replace the FFH × Parkinson's Foundation × MJFF × [Your Institution] cobrand in the hero
- Drop in your logo PNG (white version) — same 48px height as FFH logo
📚 Evidence Base — what this course is built on
- AHRQ SHARE Approach — 5-step shared decision making framework. AHRQ Pub. 25-0005, Oct 2024. ahrq.gov/sdm
- AHRQ Health Literacy Universal Precautions Toolkit (3rd ed.) — teach-back, plain language, accessible materials. AHRQ Pub. 23-0075, March 2024.
- Parkinson's Foundation — patient education, Centers of Excellence, peer mentor program, Aware in Care hospital safety kit, Helpline 1-800-4PD-INFO (1-800-473-4636).
- Michael J. Fox Foundation (MJFF) — research funding, Patient Council, Fox Insight longitudinal study, Fox Trial Finder, advocacy.
- APDA · American Parkinson Disease Association — chapters, Information & Referral Line 1-800-223-2732, peer support.
- NIH NINDS · Parkinson's Disease — comprehensive patient and clinician summaries.
- AAN PD Practice Guideline (American Academy of Neurology, 2021) — evidence-based diagnosis and treatment guidance.
- MDS Clinical Diagnostic Criteria (2015) and MDS Prodromal Criteria (2015/2019) — Movement Disorder Society standards for clinical diagnosis and prodromal recognition.
- Parkinson's Outcomes Project — landmark longitudinal study on PD care quality, exercise effects, and Center of Excellence value.
- SPARX trial — vigorous aerobic exercise (80–85% max HR, 30 min, 3–4×/week) slows motor progression. Foundational for the disease-modifying-exercise framing.
- PD-Active and Park-in-Shape RCTs — replicate and extend SPARX findings on exercise as disease-modifying medicine.
- Davis Phinney Foundation · "Every Victory Counts" manual — gold-standard PD self-management workbook, free print + digital.
- Brian Grant Foundation — exercise + nutrition + young-onset PD focus.
- PMD Alliance — culturally-affirming, equity-focused PD support groups and education.
- PD Avengers — global advocacy network, young-onset PD focus.
- Fox Insight (MJFF) and PPMI (Parkinson's Progression Markers Initiative) — patient-data and biomarker longitudinal studies accelerating PD research; free patient enrollment.
- LSVT Global — LSVT BIG (PT) and LSVT LOUD (SLP) PD-specific intensive 4-week protocols with strong RCT evidence.
- VA · Parkinson's Disease and Agent Orange / Camp Lejeune presumptive eligibility — Vietnam-era veterans and Camp Lejeune veterans qualify for VA care and disability for PD.
- 988 Suicide & Crisis Lifeline — call or text 988, free, confidential, 24/7. Crisis Text Line: text HOME to 741741. Veterans Crisis Line: 988 then press 1. PD has 30–50% prevalence of depression / anxiety; mood crisis resources are surfaced.
- FFH Prepared Patient · Depression and Anxiety courses — bidirectionally cross-referenced from this PD course's Module 7 for the 30–50% mood-symptom prevalence in PD.
- FFH Cluster Courses (HTN / T2D / CHF / CAD / post-MI / post-stroke / Alzheimer's / MS / brain tumor / cirrhosis / CKD) — the canonical comorbidity cluster module (md5 7587a559b24ca8b9bab40b1756475d84) is CROSS-REFERENCED from this PD course's Module 7, NOT embedded or modified. PD is not a cluster member; vascular parkinsonism mimics PD and HTN/T2D/OSA may amplify symptoms.
- Force Field Fact Sheet · Parkinson's Disease — the 16-square primer (companion file). This deep course extends and operationalizes the fact sheet.
Course content is educational and not a substitute for medical advice from your own clinicians. Institutions cloning this course are responsible for accuracy of all customized blocks.