<table class="infobox infobox-therapeutic">
<tr>
<th class="infobox-header" colspan="2">Clinical Management Guide for CBS/PSP</th>
</tr>
<tr>
<td class="label">Drug</td>
<td>Mechanism</td>
</tr>
<tr>
<td class="label">Donepezil (Aricept)</td>
<td>AChE inhibition</td>
</tr>
<tr>
<td class="label">Rivastigmine (Exelon)</td>
<td>AChE + BuChE inhibition</td>
</tr>
<tr>
<td class="label">Galantamine (Razadyne)</td>
<td>AChE + allosteric modulation</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Mechanism</td>
</tr>
<tr>
<td class="label">Memantine (Namenda)</td>
<td>NMDA receptor antagonism</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Indication</td>
</tr>
<tr>
<td class="label">Sertraline (Zoloft)</td>
<td>Depression, anxiety</td>
</tr>
<tr>
<td class="label">Escitalopram (Lexapro)</td>
<td>Depression, anxiety</td>
</tr>
<tr>
<td class="label">Fluoxetine (Prozac)</td>
<td>Depression</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Class</td>
</tr>
<tr>
<td class="label">Venlafaxine (Effexor)</td>
<td>SNRI</td>
</tr>
<tr>
<td class="label">Bupropion (Wellbutrin)</td>
<td>NDRI</td>
</tr>
<tr>
<td class="label">Mirtazapine (Remeron)</td>
<td>NaSSA</td>
</tr>
<tr>
<td class="label">Trazodone</td>
<td>SARI</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Indication</td>
</tr>
<tr>
<td class="label
<table class="infobox infobox-therapeutic">
<tr>
<th class="infobox-header" colspan="2">Clinical Management Guide for CBS/PSP</th>
</tr>
<tr>
<td class="label">Drug</td>
<td>Mechanism</td>
</tr>
<tr>
<td class="label">Donepezil (Aricept)</td>
<td>AChE inhibition</td>
</tr>
<tr>
<td class="label">Rivastigmine (Exelon)</td>
<td>AChE + BuChE inhibition</td>
</tr>
<tr>
<td class="label">Galantamine (Razadyne)</td>
<td>AChE + allosteric modulation</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Mechanism</td>
</tr>
<tr>
<td class="label">Memantine (Namenda)</td>
<td>NMDA receptor antagonism</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Indication</td>
</tr>
<tr>
<td class="label">Sertraline (Zoloft)</td>
<td>Depression, anxiety</td>
</tr>
<tr>
<td class="label">Escitalopram (Lexapro)</td>
<td>Depression, anxiety</td>
</tr>
<tr>
<td class="label">Fluoxetine (Prozac)</td>
<td>Depression</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Class</td>
</tr>
<tr>
<td class="label">Venlafaxine (Effexor)</td>
<td>SNRI</td>
</tr>
<tr>
<td class="label">Bupropion (Wellbutrin)</td>
<td>NDRI</td>
</tr>
<tr>
<td class="label">Mirtazapine (Remeron)</td>
<td>NaSSA</td>
</tr>
<tr>
<td class="label">Trazodone</td>
<td>SARI</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Indication</td>
</tr>
<tr>
<td class="label">Valproic acid (Depakote)</td>
<td>Mania, mood stabilization</td>
</tr>
<tr>
<td class="label">Lamotrigine (Lamictal)</td>
<td>Mood stabilization</td>
</tr>
<tr>
<td class="label">Lithium</td>
<td>Bipolar, mood</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Mechanism</td>
</tr>
<tr>
<td class="label">Pimavanserin</td>
<td>5-HT2A inverse agonist</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Mechanism</td>
</tr>
<tr>
<td class="label">Quetiapine</td>
<td>D2 blockade (transient)</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Mechanism</td>
</tr>
<tr>
<td class="label">Clozapine</td>
<td>D4 > D2 blockade</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Reason</td>
</tr>
<tr>
<td class="label">Haloperidol (Haldol)</td>
<td>Classic antipsychotic — severe worsening</td>
</tr>
<tr>
<td class="label">Risperidone (Risperdal)</td>
<td>Significant motor worsening</td>
</tr>
<tr>
<td class="label">Olanzapine (Zyprexa)</td>
<td>Significant motor worsening</td>
</tr>
<tr>
<td class="label">Aripiprazole (Abilify)</td>
<td>Partial agonist — unpredictable</td>
</tr>
<tr>
<td class="label">Intervention</td>
<td>First Choice</td>
</tr>
<tr>
<td class="label">Sleep hygiene</td>
<td>CBT-I</td>
</tr>
<tr>
<td class="label">Melatonin</td>
<td>1-10mg nightly</td>
</tr>
<tr>
<td class="label">Trazodone</td>
<td>25-50mg nightly</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Clonazepam</td>
<td>0.25-1mg nightly</td>
</tr>
<tr>
<td class="label">Melatonin</td>
<td>3-12mg nightly</td>
</tr>
<tr>
<td class="label">Pramipexole</td>
<td>0.125-0.75mg</td>
</tr>
<tr>
<td class="label">Intervention</td>
<td>Notes</td>
</tr>
<tr>
<td class="label">Modafinil</td>
<td>May help EDS; limited PD data</td>
</tr>
<tr>
<td class="label">Sunlight exposure</td>
<td>First-line — circadian regulation</td>
</tr>
<tr>
<td class="label">Exercise</td>
<td>Helps sleep quality</td>
</tr>
<tr>
<td class="label">Avoid sedating meds</td>
<td>Reduce benzodiazepines, opioids</td>
</tr>
<tr>
<td class="label">Approach</td>
<td>Evidence</td>
</tr>
<tr>
<td class="label">CBT</td>
<td>Strong</td>
</tr>
<tr>
<td class="label">Mindfulness/meditation</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Exercise</td>
<td>Strong</td>
</tr>
<tr>
<td class="label">Peer support groups</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Indication</td>
</tr>
<tr>
<td class="label">Buspirone</td>
<td>Generalized anxiety</td>
</tr>
<tr>
<td class="label">Escitalopram</td>
<td>Anxiety disorder</td>
</tr>
<tr>
<td class="label">Lorazepam</td>
<td>Acute anxiety</td>
</tr>
<tr>
<td class="label">Type</td>
<td>Description</td>
</tr>
<tr>
<td class="label">In-home respite</td>
<td>Professional caregiver comes to your home</td>
</tr>
<tr>
<td class="label">Adult day programs</td>
<td>Facility-based care during daytime hours</td>
</tr>
<tr>
<td class="label">Short-term nursing facility</td>
<td>Temporary stay in care facility</td>
</tr>
<tr>
<td class="label">Family/friends</td>
<td>Help from trusted individuals</td>
</tr>
<tr>
<td class="label">Resource</td>
<td>Contact</td>
</tr>
<tr>
<td class="label">CurePSP</td>
<td>curepsp.org / 1-800-457-4777</td>
</tr>
<tr>
<td class="label">Parkinson's Foundation</td>
<td>parkinson.org / 1-800-4PD-INFO</td>
</tr>
<tr>
<td class="label">ARCH Respite</td>
<td>archrespite.org</td>
</tr>
<tr>
<td class="label">Social Security</td>
<td>ssa.gov</td>
</tr>
<tr>
<td class="label">Medicare</td>
<td>medicare.gov</td>
</tr>
<tr>
<td class="label">Care.com</td>
<td>care.com</td>
</tr>
<tr>
<td class="label">Family Caregiver Alliance</td>
<td>caregiver.org</td>
</tr>
<tr>
<td class="label">AARP Caregiving</td>
<td>aarp.org/caregiving</td>
</tr>
<tr>
<td class="label">Modification</td>
<td>Purpose</td>
</tr>
<tr>
<td class="label">Simplified living space</td>
<td>Reduce confusion</td>
</tr>
<tr>
<td class="label">Contrast enhancements</td>
<td>Help visuospatial deficits</td>
</tr>
<tr>
<td class="label">Grab bars, ramps</td>
<td>Fall prevention</td>
</tr>
<tr>
<td class="label">Daily routines</td>
<td>Reduce anxiety</td>
</tr>
<tr>
<td class="label">Priority</td>
<td>Intervention</td>
</tr>
<tr>
<td class="label">1</td>
<td>Pimavanserin</td>
</tr>
<tr>
<td class="label">2</td>
<td>SSRI (sertraline)</td>
</tr>
<tr>
<td class="label">3</td>
<td>Donepezil</td>
</tr>
<tr>
<td class="label">4</td>
<td>Melatonin</td>
</tr>
<tr>
<td class="label">5</td>
<td>CBT + support</td>
</tr>
<tr>
<td class="label">6</td>
<td>Avoid typical antipsychotics</td>
</tr>
<tr>
<td class="label">Medication</td>
<td>Levodopa Interaction</td>
</tr>
<tr>
<td class="label">Sertraline</td>
<td>Minimal</td>
</tr>
<tr>
<td class="label">Pimavanserin</td>
<td>Minimal</td>
</tr>
<tr>
<td class="label">Quetiapine</td>
<td>Minimal</td>
</tr>
<tr>
<td class="label">Trazodone</td>
<td>Minimal</td>
</tr>
<tr>
<td class="label">Avoid: MAOIs</td>
<td>Hypertensive crisis</td>
</tr>
<tr>
<td class="label">Pain Type</td>
<td>Prevalence</td>
</tr>
<tr>
<td class="label">Musculoskeletal</td>
<td>50-60%</td>
</tr>
<tr>
<td class="label">Dystonic</td>
<td>40-50%</td>
</tr>
<tr>
<td class="label">Radiculopathy</td>
<td>20-30%</td>
</tr>
<tr>
<td class="label">Central (thalamic)</td>
<td>15-25%</td>
</tr>
<tr>
<td class="label">Neuropathic</td>
<td>15-20%</td>
</tr>
<tr>
<td class="label">Medication</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Gabapentin</td>
<td>300-900mg TID</td>
</tr>
<tr>
<td class="label">Pregabalin</td>
<td>75-150mg BID</td>
</tr>
<tr>
<td class="label">Duloxetine</td>
<td>30-60mg daily</td>
</tr>
<tr>
<td class="label">Medication</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Tramadol</td>
<td>50-100mg q6h PRN</td>
</tr>
<tr>
<td class="label">Oxycodone</td>
<td>5-10mg q6h PRN</td>
</tr>
<tr>
<td class="label">Acetaminophen</td>
<td>650-1000mg q6h</td>
</tr>
<tr>
<td class="label">Intervention</td>
<td>Evidence</td>
</tr>
<tr>
<td class="label">Physical Therapy</td>
<td>Strong</td>
</tr>
<tr>
<td class="label">Heat/Cold Therapy</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">TENS (Transcutaneous Electrical Nerve Stimulation)</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Massage Therapy</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Acupuncture</td>
<td>Mixed</td>
</tr>
<tr>
<td class="label">Assistive Devices</td>
<td>Strong</td>
</tr>
<tr>
<td class="label">Tool</td>
<td>Description</td>
</tr>
<tr>
<td class="label">VAS (Visual Analog Scale)</td>
<td>0-10 pain rating</td>
</tr>
<tr>
<td class="label">PDQ-39 Pain Subscale</td>
<td>Disease-specific</td>
</tr>
<tr>
<td class="label">Brief Pain Inventory</td>
<td>Multi-dimensional</td>
</tr>
<tr>
<td class="label">McGill Pain Questionnaire</td>
<td>Detailed descriptors</td>
</tr>
<tr>
<td class="label">Pain Medication</td>
<td>Levodopa Interaction</td>
</tr>
<tr>
<td class="label">Gabapentin</td>
<td>Minimal</td>
</tr>
<tr>
<td class="label">Pregabalin</td>
<td>Minimal</td>
</tr>
<tr>
<td class="label">Duloxetine</td>
<td>Minimal</td>
</tr>
<tr>
<td class="label">Tramadol</td>
<td>Minimal</td>
</tr>
<tr>
<td class="label">Oxycodone</td>
<td>Enhanced sedation</td>
</tr>
<tr>
<td class="label">Aspect</td>
<td>Finding</td>
</tr>
<tr>
<td class="label">Motor symptoms</td>
<td>Mild improvement in UPDRS motor scores</td>
</tr>
<tr>
<td class="label">Pain management</td>
<td>Moderate pain reduction</td>
</tr>
<tr>
<td class="label">Sleep quality</td>
<td>Improved sleep efficiency</td>
</tr>
<tr>
<td class="label">Quality of life</td>
<td>Statistically significant improvement</td>
</tr>
<tr>
<td class="label">Acupoint</td>
<td>Location</td>
</tr>
<tr>
<td class="label">LV3 (Taichong)</td>
<td>Between 1st/2nd toes</td>
</tr>
<tr>
<td class="label">GB20 (Fengchi)</td>
<td>Base of skull</td>
</tr>
<tr>
<td class="label">ST36 (Zusanli)</td>
<td>Below knee</td>
</tr>
<tr>
<td class="label">SP6 (Sanyinjiao)</td>
<td>Above ankle</td>
</tr>
<tr>
<td class="label">PC6 (Neiguan)</td>
<td>Wrist</td>
</tr>
<tr>
<td class="label">DU20 (Baihui)</td>
<td>Top of head</td>
</tr>
<tr>
<td class="label">LI4 (Hegu)</td>
<td>Hand</td>
</tr>
<tr>
<td class="label">Aspect</td>
<td>Finding</td>
</tr>
<tr>
<td class="label">Muscle rigidity</td>
<td>Moderate reduction in tone</td>
</tr>
<tr>
<td class="label">Pain</td>
<td>Significant reduction</td>
</tr>
<tr>
<td class="label">Anxiety/depression</td>
<td>Improved mood scores</td>
</tr>
<tr>
<td class="label">Sleep quality</td>
<td>Improved sleep efficiency</td>
</tr>
<tr>
<td class="label">Technique</td>
<td>Description</td>
</tr>
<tr>
<td class="label">Swedish Massage</td>
<td>Long strokes, gentle pressure</td>
</tr>
<tr>
<td class="label">Myofascial Release</td>
<td>Deep pressure to fascia</td>
</tr>
<tr>
<td class="label">Trigger Point</td>
<td>Direct pressure on tender points</td>
</tr>
<tr>
<td class="label">Gentle Stretching</td>
<td>Passive range of motion</td>
</tr>
<tr>
<td class="label">Reflexology</td>
<td>Pressure to feet/hands</td>
</tr>
<tr>
<td class="label">Aspect</td>
<td>Finding</td>
</tr>
<tr>
<td class="label">Anxiety</td>
<td>Significant reduction (30-40%)</td>
</tr>
<tr>
<td class="label">Sleep quality</td>
<td>Improved sleep onset and duration</td>
</tr>
<tr>
<td class="label">Nausea</td>
<td>Reduction in chemotherapy-induced nausea</td>
</tr>
<tr>
<td class="label">Depression</td>
<td>Mild improvement</td>
</tr>
<tr>
<td class="label">Oil</td>
<td>Primary Use</td>
</tr>
<tr>
<td class="label">Lavender</td>
<td>Anxiety, sleep</td>
</tr>
<tr>
<td class="label">Bergamot</td>
<td>Anxiety, mood</td>
</tr>
<tr>
<td class="label">Chamomile</td>
<td>Sleep, anxiety</td>
</tr>
<tr>
<td class="label">Peppermint</td>
<td>Nausea, fatigue</td>
</tr>
<tr>
<td class="label">Rosemary</td>
<td>Cognitive support, fatigue</td>
</tr>
<tr>
<td class="label">Ylang Ylang</td>
<td>Anxiety, blood pressure</td>
</tr>
<tr>
<td class="label">Aspect</td>
<td>Finding</td>
</tr>
<tr>
<td class="label">Gait/balance</td>
<td>Improved stride length, velocity</td>
</tr>
<tr>
<td class="label">Motor timing</td>
<td>Rhythmic auditory stimulation improves movement</td>
</tr>
<tr>
<td class="label">Depression/anxiety</td>
<td>Significant reduction</td>
</tr>
<tr>
<td class="label">Cognition</td>
<td>Improved verbal fluency</td>
</tr>
<tr>
<td class="label">Approach</td>
<td>Description</td>
</tr>
<tr>
<td class="label">Rhythmic Auditory Stimulation (RAS)</td>
<td>Rhythmic cues to improve gait timing</td>
</tr>
<tr>
<td class="label">Active Music Making</td>
<td>Playing instruments, singing</td>
</tr>
<tr>
<td class="label">Receptive Music Therapy</td>
<td>Listening to music</td>
</tr>
<tr>
<td class="label">Musical Gait Training</td>
<td>Music with metronome for walking</td>
</tr>
<tr>
<td class="label">Aspect</td>
<td>Finding</td>
</tr>
<tr>
<td class="label">Anxiety</td>
<td>Significant reduction</td>
</tr>
<tr>
<td class="label">Depression</td>
<td>Moderate reduction</td>
</tr>
<tr>
<td class="label">Pain perception</td>
<td>Reduced pain catastrophizing</td>
</tr>
<tr>
<td class="label">Sleep</td>
<td>Improved sleep quality</td>
</tr>
<tr>
<td class="label">Cognition</td>
<td>Mild improvement in attention</td>
</tr>
<tr>
<td class="label">Technique</td>
<td>Description</td>
</tr>
<tr>
<td class="label">Mindfulness-Based Stress Reduction (MBSR)</td>
<td>8-week structured program</td>
</tr>
<tr>
<td class="label">Body Scan</td>
<td>Systematic attention to body sensations</td>
</tr>
<tr>
<td class="label">Loving-Kindness (Metta)</td>
<td>Cultivate compassion for self/others</td>
</tr>
<tr>
<td class="label">Breath Awareness</td>
<td>Focus on breathing</td>
</tr>
<tr>
<td class="label">Guided Meditation</td>
<td>Led by instructor/recording</td>
</tr>
<tr>
<td class="label">Resource</td>
<td>Type</td>
</tr>
<tr>
<td class="label">Insight Timer</td>
<td>App</td>
</tr>
<tr>
<td class="label">Mindfulness-Based Stress Reduction</td>
<td>Course</td>
</tr>
<tr>
<td class="label">Parkinson's Foundation Resources</td>
<td>Website</td>
</tr>
<tr>
<td class="label">Headspace</td>
<td>App</td>
</tr>
<tr>
<td class="label">Aspect</td>
<td>Finding</td>
</tr>
<tr>
<td class="label">Pain</td>
<td>Moderate reduction</td>
</tr>
<tr>
<td class="label">Anxiety</td>
<td>Significant reduction</td>
</tr>
<tr>
<td class="label">Sleep</td>
<td>Improved sleep quality</td>
</tr>
<tr>
<td class="label">Chemotherapy side effects</td>
<td>Reduced nausea, fatigue</td>
</tr>
<tr>
<td class="label">Technique</td>
<td>Description</td>
</tr>
<tr>
<td class="label">Progressive Relaxation</td>
<td>Image muscle groups relaxing</td>
</tr>
<tr>
<td class="label">Nature Scenes</td>
<td>Imagine peaceful environments</td>
</tr>
<tr>
<td class="label">Body Repair Imagery</td>
<td>Visualize healing processes</td>
</tr>
<tr>
<td class="label">Motor Imagory</td>
<td>Visualize movements</td>
</tr>
<tr>
<td class="label">Pain Control</td>
<td>Imagine pain as manageable</td>
</tr>
<tr>
<td class="label">Aspect</td>
<td>Finding</td>
</tr>
<tr>
<td class="label">Balance</td>
<td>Significant improvement</td>
</tr>
<tr>
<td class="label">Flexibility</td>
<td>Improved range of motion</td>
</tr>
<tr>
<td class="label">Depression/anxiety</td>
<td>Moderate reduction</td>
</tr>
<tr>
<td class="label">Quality of life</td>
<td>Improved</td>
</tr>
<tr>
<td class="label">Gait</td>
<td>Mild improvement in velocity</td>
</tr>
<tr>
<td class="label">Style</td>
<td>Suitability</td>
</tr>
<tr>
<td class="label">Chair Yoga</td>
<td>Excellent</td>
</tr>
<tr>
<td class="label">Gentle/Restorative</td>
<td>Excellent</td>
</tr>
<tr>
<td class="label">Hatha (modified)</td>
<td>Good</td>
</tr>
<tr>
<td class="label">Iyengar</td>
<td>Good</td>
</tr>
<tr>
<td class="label">Kundalini</td>
<td>Caution</td>
</tr>
<tr>
<td class="label">Power/Vinyasa</td>
<td>Avoid</td>
</tr>
<tr>
<td class="label">Therapy</td>
<td>Evidence Level</td>
</tr>
<tr>
<td class="label">Acupuncture</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Massage Therapy</td>
<td>Moderate-High</td>
</tr>
<tr>
<td class="label">Aromatherapy</td>
<td>Low-Moderate</td>
</tr>
<tr>
<td class="label">Music Therapy</td>
<td>Moderate-High</td>
</tr>
<tr>
<td class="label">Meditation/Mindfulness</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Guided Imagery</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Adapted Yoga</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Day</td>
<td>Morning</td>
</tr>
<tr>
<td class="label">Monday</td>
<td>Gentle stretch/yoga</td>
</tr>
<tr>
<td class="label">Tuesday</td>
<td>Music therapy/rhythm</td>
</tr>
<tr>
<td class="label">Wednesday</td>
<td>Massage (weekly)</td>
</tr>
<tr>
<td class="label">Thursday</td>
<td>Acupuncture</td>
</tr>
<tr>
<td class="label">Friday</td>
<td>Music therapy</td>
</tr>
<tr>
<td class="label">Saturday</td>
<td>Gentle movement</td>
</tr>
<tr>
<td class="label">Sunday</td>
<td>Rest</td>
</tr>
<tr>
<td class="label">Resource</td>
<td>URL</td>
</tr>
<tr>
<td class="label">ClinicalTrials.gov</td>
<td>https://clinicaltrials.gov</td>
</tr>
<tr>
<td class="label">CurePSP Clinical Trials</td>
<td>https://www.curepsp.org/clinical-trials</td>
</tr>
<tr>
<td class="label">Michael J. Fox Foundation</td>
<td>https://www.michaeljfox.org/trial-finder</td>
</tr>
<tr>
<td class="label">Trial ID</td>
<td>Drug/Intervention</td>
</tr>
<tr>
<td class="label">~~NCT05615614~~</td>
<td>E2814 (Anti-tau)</td>
</tr>
<tr>
<td class="label">NCT05318985</td>
<td>Bepranemab</td>
</tr>
<tr>
<td class="label">NCT05297202</td>
<td>Lithium carbonate</td>
</tr>
<tr>
<td class="label">Biomarker</td>
<td>Test Frequency</td>
</tr>
<tr>
<td class="label">NfL (Neurofilament Light Chain)</td>
<td>Every 6 months</td>
</tr>
<tr>
<td class="label">p-tau217</td>
<td>Every 12 months</td>
</tr>
<tr>
<td class="label">GFAP</td>
<td>Every 12 months</td>
</tr>
<tr>
<td class="label">Modality</td>
<td>Frequency</td>
</tr>
<tr>
<td class="label">MRI with volumetrics</td>
<td>Every 12-24 months</td>
</tr>
<tr>
<td class="label">Tau PET (flortaucipir)</td>
<td>Baseline + 12-24 months</td>
</tr>
<tr>
<td class="label">DAT-SPECT</td>
<td>Every 24 months</td>
</tr>
<tr>
<td class="label">Device/Platform</td>
<td>Parameters</td>
</tr>
<tr>
<td class="label">Apple Watch / Samsung Watch</td>
<td>Step count, gait rhythm, tremor</td>
</tr>
<tr>
<td class="label">KinetiGait</td>
<td>Gait velocity, stride length</td>
</tr>
<tr>
<td class="label">PDMapper</td>
<td>Motor fluctuations, dyskinesia</td>
</tr>
<tr>
<td class="label">Verily Study Watch</td>
<td>Tremor, bradykinesia</td>
</tr>
<tr>
<td class="label">App</td>
<td>Assessment</td>
</tr>
<tr>
<td class="label">CogniFit</td>
<td>Executive function, memory</td>
</tr>
<tr>
<td class="label">BrainHQ</td>
<td>Cognitive training + metrics</td>
</tr>
<tr>
<td class="label">MyCognition</td>
<td>Working memory, attention</td>
</tr>
<tr>
<td class="label">Cambridge Neuropsychological Test Automated Battery (CANTAB)</td>
<td>Comprehensive cognitive battery</td>
</tr>
<tr>
<td class="label">Test</td>
<td>Baseline</td>
</tr>
<tr>
<td class="label">NfL blood</td>
<td>✓</td>
</tr>
<tr>
<td class="label">p-tau217</td>
<td>✓</td>
</tr>
<tr>
<td class="label">MRI volumetrics</td>
<td>✓</td>
</tr>
<tr>
<td class="label">Tau PET</td>
<td>✓</td>
</tr>
<tr>
<td class="label">Cognitive testing</td>
<td>✓</td>
</tr>
<tr>
<td class="label">Wearable monitoring</td>
<td>Continuous</td>
</tr>
<tr>
<td class="label">Biomarker</td>
<td>Reference Range</td>
</tr>
<tr>
<td class="label">Total tau</td>
<td><300 pg/mL</td>
</tr>
<tr>
<td class="label">p-tau181</td>
<td><50 pg/mL</td>
</tr>
<tr>
<td class="label">p-tau217</td>
<td><100 pg/mL</td>
</tr>
<tr>
<td class="label">NfL</td>
<td><800 pg/mL</td>
</tr>
<tr>
<td class="label">GFAP</td>
<td><200 pg/mL</td>
</tr>
<tr>
<td class="label">Alpha-synuclein RT-QuIC</td>
<td>Negative</td>
</tr>
<tr>
<td class="label">Tracer</td>
<td>Brand Name</td>
</tr>
<tr>
<td class="label">Flortaucipir (AV-1451)</td>
<td>Tauvid</td>
</tr>
<tr>
<td class="label">MK-6240</td>
<td>—</td>
</tr>
<tr>
<td class="label">PI-2620</td>
<td>—</td>
</tr>
<tr>
<td class="label">Finding</td>
<td>CBS</td>
</tr>
<tr>
<td class="label">Asymmetric cortical uptake</td>
<td>Common (>70%)</td>
</tr>
<tr>
<td class="label">Midbrain/brainstem uptake</td>
<td>Rare</td>
</tr>
<tr>
<td class="label">Putamen uptake</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Cerebellar uptake</td>
<td>Rare</td>
</tr>
<tr>
<td class="label">Center</td>
<td>Location</td>
</tr>
<tr>
<td class="label">UCSF</td>
<td>San Francisco</td>
</tr>
<tr>
<td class="label">Mayo Clinic</td>
<td>Rochester</td>
</tr>
<tr>
<td class="label">MGH</td>
<td>Boston</td>
</tr>
<tr>
<td class="label">Cleveland Clinic</td>
<td>Cleveland</td>
</tr>
<tr>
<td class="label">Organization</td>
<td>Services</td>
</tr>
<tr>
<td class="label">CurePSP</td>
<td>Education, support groups, care navigator, research advocacy</td>
</tr>
<tr>
<td class="label">Michael J. Fox Foundation</td>
<td>Research updates, clinical trial matching, support programs</td>
</tr>
<tr>
<td class="label">Parkinson's Foundation</td>
<td>Helpline, support groups, caregiving resources</td>
</tr>
<tr>
<td class="label">AFTD (Association for Frontotemporal Degeneration)</td>
<td>Support groups, education, caregiver resources</td>
</tr>
<tr>
<td class="label">Family Caregiver Alliance</td>
<td>Comprehensive caregiver resources, policy advocacy</td>
</tr>
<tr>
<td class="label">Caregiver Action Network</td>
<td>Peer support, resources, family caregiving tips</td>
</tr>
<tr>
<td class="label">Brain Support Network</td>
<td>Patient/family support, resource navigation</td>
</tr>
<tr>
<td class="label">Factor</td>
<td>Assessment</td>
</tr>
<tr>
<td class="label">Relevance</td>
<td>10/10</td>
</tr>
<tr>
<td class="label">Urgency</td>
<td>High</td>
</tr>
<tr>
<td class="label">Resource Availability</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Implementation Complexity</td>
<td>Low-Medium</td>
</tr>
<tr>
<td class="label">Overall Priority</td>
<td>Essential</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Fludrocortisone</td>
<td>0.1-0.2 mg/day</td>
</tr>
<tr>
<td class="label">Midodrine</td>
<td>5-10 mg TID</td>
</tr>
<tr>
<td class="label">Droxidopa</td>
<td>100-600 mg TID</td>
</tr>
<tr>
<td class="label">Pyridostigmine</td>
<td>60 mg TID</td>
</tr>
<tr>
<td class="label">Intervention</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Fiber supplementation</td>
<td>25-35 g/day</td>
</tr>
<tr>
<td class="label">Polyethylene glycol (Miralax)</td>
<td>17 g/day</td>
</tr>
<tr>
<td class="label">Sennosides</td>
<td>8.6-17.2 mg PRN</td>
</tr>
<tr>
<td class="label">Lubiprostone</td>
<td>8-24 μg BID</td>
</tr>
<tr>
<td class="label">Linaclotide</td>
<td>145-290 μg QD</td>
</tr>
<tr>
<td class="label">Prucalopride</td>
<td>2 mg QD</td>
</tr>
<tr>
<td class="label">Metoclopramide</td>
<td>10 mg TID</td>
</tr>
<tr>
<td class="label">Drug</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Oxybutynin</td>
<td>2.5-5 mg BID-TID</td>
</tr>
<tr>
<td class="label">Tolterodine</td>
<td>2-4 mg BID</td>
</tr>
<tr>
<td class="label">Solifenacin</td>
<td>5-10 mg QD</td>
</tr>
<tr>
<td class="label">Trospium</td>
<td>20 mg BID</td>
</tr>
<tr>
<td class="label">Mirabegron</td>
<td>25-50 mg QD</td>
</tr>
<tr>
<td class="label">Treatment</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Sildenafil</td>
<td>25-100 mg PRN</td>
</tr>
<tr>
<td class="label">Tadalafil</td>
<td>5-20 mg PRN/QD</td>
</tr>
<tr>
<td class="label">Vardenafil</td>
<td>5-20 mg PRN</td>
</tr>
<tr>
<td class="label">Test</td>
<td>Purpose</td>
</tr>
<tr>
<td class="label">Tilt-table test</td>
<td>Confirm orthostatic hypotension</td>
</tr>
<tr>
<td class="label">Bladder ultrasound</td>
<td>Post-void residual volume</td>
</tr>
<tr>
<td class="label">Urodynamic studies</td>
<td>Detailed bladder function</td>
</tr>
<tr>
<td class="label">Cardiac MIBG scan</td>
<td>Differentiate synucleinopathies</td>
</tr>
<tr>
<td class="label">Skin biopsy</td>
<td>Autonomic nerve fiber density</td>
</tr>
<tr>
<td class="label">Drug Category</td>
<td>Interaction</td>
</tr>
<tr>
<td class="label">Antimuscarinics</td>
<td>May reduce GI motility, affect levodopa absorption</td>
</tr>
<tr>
<td class="label">α1-blockers (tamsulosin)</td>
<td>Additive hypotension, especially with midodrine</td>
</tr>
<tr>
<td class="label">PDE5 inhibitors</td>
<td>Additive hypotension with vasodilators</td>
</tr>
<tr>
<td class="label">Sympathomimetics (midodrine)</td>
<td>MAO-Bi interaction risk</td>
</tr>
<tr>
<td class="label">Metoclopramide</td>
<td>May worsen parkinsonism</td>
</tr>
<tr>
<td class="label">SSRIs</td>
<td>Serotonin syndrome risk with MAO-Bi (theoretical)</td>
</tr>
<tr>
<td class="label">Factor</td>
<td>Assessment</td>
</tr>
<tr>
<td class="label">Mechanism fit</td>
<td>High — autonomic dysfunction is a core feature of atypical parkinsonism</td>
</tr>
<tr>
<td class="label">Evidence level</td>
<td>High — established symptom management algorithms</td>
</tr>
<tr>
<td class="label">Safety</td>
<td>Generally good with appropriate monitoring</td>
</tr>
<tr>
<td class="label">Accessibility</td>
<td>High — all interventions available and most are off-patent</td>
</tr>
<tr>
<td class="label">Priority</td>
<td>HIGH — quality of life impact is substantial</td>
</tr>
<tr>
<td class="label">Cost</td>
<td>Typically Covered By</td>
</tr>
<tr>
<td class="label">Study drug</td>
<td>Sponsor 100%</td>
</tr>
<tr>
<td class="label">Study visits</td>
<td>Sponsor 100%</td>
</tr>
<tr>
<td class="label">Procedures</td>
<td>Sponsor 100%</td>
</tr>
<tr>
<td class="label">Travel</td>
<td>Some sponsors offer stipends</td>
</tr>
<tr>
<td class="label">Item</td>
<td>Annual Cost</td>
</tr>
<tr>
<td class="label">Levodopa</td>
<td>$500-2,000</td>
</tr>
<tr>
<td class="label">CoQ10</td>
<td>$300-600</td>
</tr>
<tr>
<td class="label">NACET</td>
<td>$300-500</td>
</tr>
<tr>
<td class="label">Tau PET</td>
<td>$10,000-15,000</td>
</tr>
<tr>
<td class="label">Medication</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Fludrocortisone</td>
<td>0.1-0.3mg daily</td>
</tr>
<tr>
<td class="label">Midodrine</td>
<td>5-10mg TID</td>
</tr>
<tr>
<td class="label">Droxidopa</td>
<td>100-600mg TID</td>
</tr>
<tr>
<td class="label">Pyridostigmine</td>
<td>60-120mg daily</td>
</tr>
<tr>
<td class="label">Medication</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Polyethylene glycol</td>
<td>17g daily</td>
</tr>
<tr>
<td class="label">Lactulose</td>
<td>15-30ml BID</td>
</tr>
<tr>
<td class="label">Senna</td>
<td>8.6-17.2mg daily</td>
</tr>
<tr>
<td class="label">Docusate</td>
<td>100mg BID</td>
</tr>
<tr>
<td class="label">Accommodation</td>
<td>Description</td>
</tr>
<tr>
<td class="label">Flexible schedule</td>
<td>Work around medication "on" times</td>
</tr>
<tr>
<td class="label">Modified duties</td>
<td>Reduce physical demands</td>
</tr>
<tr>
<td class="label">Assistive technology</td>
<td>Voice recognition, ergonomic equipment</td>
</tr>
<tr>
<td class="label">Rest periods</td>
<td>Frequent breaks for fatigue</td>
</tr>
<tr>
<td class="label">Remote work</td>
<td>Reduce commuting stress</td>
</tr>
<tr>
<td class="label">Job coaching</td>
<td>On-site support for accommodations</td>
</tr>
<tr>
<td class="label">Step</td>
<td>Description</td>
</tr>
<tr>
<td class="label">1. Gather records</td>
<td>Medical records, work history, financial documents</td>
</tr>
<tr>
<td class="label">2. Complete application</td>
<td>Online at ssa.gov or in person</td>
</tr>
<tr>
<td class="label">3. Submit evidence</td>
<td>Diagnosis, treatment records, functional assessments</td>
</tr>
<tr>
<td class="label">4. Decision</td>
<td>Initial decision on claim</td>
</tr>
<tr>
<td class="label">Option</td>
<td>Pros</td>
</tr>
<tr>
<td class="label">Same employer, modified role</td>
<td>Familiar environment, benefits</td>
</tr>
<tr>
<td class="label">New employer, similar role</td>
<td>Fresh start, may have accommodations</td>
</tr>
<tr>
<td class="label">Career change</td>
<td>Leverage transferable skills</td>
</tr>
<tr>
<td class="label">Self-employment</td>
<td>Flexibility, control</td>
</tr>
<tr>
<td class="label">Stage</td>
<td>Recommendation</td>
</tr>
<tr>
<td class="label">Early (no significant impairment)</td>
<td>May drive with caution; annual assessment</td>
</tr>
<tr>
<td class="label">Moderate (motor/cognitive changes)</td>
<td>Restrict to familiar routes; consider driving cessation</td>
</tr>
<tr>
<td class="label">Advanced</td>
<td>Recommend cessation; explore transportation alternatives</td>
</tr>
<tr>
<td class="label">Factor</td>
<td>Score</td>
</tr>
<tr>
<td class="label">Relevance</td>
<td>9/10</td>
</tr>
<tr>
<td class="label">Accessibility</td>
<td>7/10</td>
</tr>
<tr>
<td class="label">Evidence base</td>
<td>6/10</td>
</tr>
<tr>
<td class="label">Safety</td>
<td>10/10</td>
</tr>
<tr>
<td class="label">Overall priority</td>
<td>8/10</td>
</tr>
<tr>
<td class="label">Food Category</td>
<td>Examples</td>
</tr>
<tr>
<td class="label">Berries</td>
<td>Blueberries, strawberries</td>
</tr>
<tr>
<td class="label">Leafy greens</td>
<td>Spinach, kale</td>
</tr>
<tr>
<td class="label">Nuts</td>
<td>Walnuts, almonds</td>
</tr>
<tr>
<td class="label">Fatty fish</td>
<td>Salmon, mackerel</td>
</tr>
<tr>
<td class="label">Whole grains</td>
<td>Oats, quinoa</td>
</tr>
<tr>
<td class="label">Legumes</td>
<td>Black beans, lentils</td>
</tr>
<tr>
<td class="label">Olive oil</td>
<td>Extra virgin</td>
</tr>
<tr>
<td class="label">Coffee/tea</td>
<td>Moderate caffeine</td>
</tr>
<tr>
<td class="label">Category</td>
<td>Signs</td>
</tr>
<tr>
<td class="label">Physical</td>
<td>Chronic fatigue, sleep disturbances, frequent illness, changes in appetite</td>
</tr>
<tr>
<td class="label">Emotional</td>
<td>Irritability, hopelessness, anxiety, feeling trapped</td>
</tr>
<tr>
<td class="label">Behavioral</td>
<td>Social withdrawal, neglect of own health, increased alcohol use</td>
</tr>
<tr>
<td class="label">Cognitive</td>
<td>Difficulty concentrating, memory problems, making errors</td>
</tr>
<tr>
<td class="label">Community</td>
<td>Platform</td>
</tr>
<tr>
<td class="label">Reddit r/Parkinsons</td>
<td>Reddit</td>
</tr>
<tr>
<td class="label">PatientsLikeMe</td>
<td>Online forum</td>
</tr>
<tr>
<td class="label">Facebook CBS/PSP groups</td>
<td>Facebook</td>
</tr>
<tr>
<td class="label">MyParkinsons</td>
<td>Online</td>
</tr>
<tr>
<td class="label">Type</td>
<td>Description</td>
</tr>
<tr>
<td class="label">In-home aide</td>
<td>Professional caregiver comes to home</td>
</tr>
<tr>
<td class="label">Adult day care</td>
<td>Day program at facility</td>
</tr>
<tr>
<td class="label">Short-term facility</td>
<td>Nursing home or assisted living</td>
</tr>
<tr>
<td class="label">Family/friends</td>
<td>Relief from trusted individuals</td>
</tr>
<tr>
<td class="label">Document</td>
<td>Purpose</td>
</tr>
<tr>
<td class="label">Advance Directive</td>
<td>Documents care preferences</td>
</tr>
<tr>
<td class="label">Healthcare Proxy</td>
<td>Names decision-maker</td>
</tr>
<tr>
<td class="label">POLST/MOLST</td>
<td>Emergency care preferences</td>
</tr>
<tr>
<td class="label">DNR Order</td>
<td>Do-not-resuscitate</td>
</tr>
<tr>
<td class="label">Document</td>
<td>Purpose</td>
</tr>
<tr>
<td class="label">Power of Attorney (POA)</td>
<td>Authorizes financial decisions</td>
</tr>
<tr>
<td class="label">Healthcare Proxy</td>
<td>Authorizes medical decisions</td>
</tr>
<tr>
<td class="label">Will</td>
<td>Distributes assets</td>
</tr>
<tr>
<td class="label">Trust</td>
<td>Manages assets, may avoid probate</td>
</tr>
<tr>
<td class="label">Source</td>
<td>Coverage</td>
</tr>
<tr>
<td class="label">Medicare</td>
<td>Limited home health (must be "homebound" with skilled need)</td>
</tr>
<tr>
<td class="label">Medicaid</td>
<td>May cover personal care services</td>
</tr>
<tr>
<td class="label">Long-term care insurance</td>
<td>Varies by policy</td>
</tr>
<tr>
<td class="label">Private pay</td>
<td>$20-40/hour depending on location</td>
</tr>
<tr>
<td class="label">Action</td>
<td>Priority</td>
</tr>
<tr>
<td class="label">Identify local support groups (PD, CurePSP)</td>
<td>High</td>
</tr>
<tr>
<td class="label">Schedule legal consultation for advance directives</td>
<td>High</td>
</tr>
<tr>
<td class="label">Explore respite care options</td>
<td>Medium</td>
</tr>
<tr>
<td class="label">Apply for disability benefits if applicable</td>
<td>High</td>
</tr>
<tr>
<td class="label">Discuss palliative care with neurologist</td>
<td>Medium</td>
</tr>
<tr>
<td class="label">Consider home health aide for assistance</td>
<td>Low</td>
</tr>
<tr>
<td class="label">Join online caregiver community</td>
<td>Medium</td>
</tr>
<tr>
<td class="label">Resource</td>
<td>Contact</td>
</tr>
<tr>
<td class="label">CurePSP</td>
<td>curepsp.org, 1-866-457-4276</td>
</tr>
<tr>
<td class="label">Parkinson's Foundation</td>
<td>parkinson.org</td>
</tr>
<tr>
<td class="label">Family Caregiver Alliance</td>
<td>caregiver.org</td>
</tr>
<tr>
<td class="label">AARP Caregiving</td>
<td>aarp.org/caregiving</td>
</tr>
<tr>
<td class="label">Area Agency on Aging</td>
<td>n4a.org</td>
</tr>
<tr>
<td class="label">Social Security Administration</td>
<td>ssa.gov</td>
</tr>
<tr>
<td class="label">The Conversation Project</td>
<td>theconversationproject.org</td>
</tr>
<tr>
<td class="label">Medicare</td>
<td>medicare.gov</td>
</tr>
<tr>
<td class="label">Sleep Disorder</td>
<td>Prevalence in CBS/PSP</td>
</tr>
<tr>
<td class="label">REM Sleep Behavior Disorder (RBD)</td>
<td>20-30%</td>
</tr>
<tr>
<td class="label">Insomnia</td>
<td>40-60%</td>
</tr>
<tr>
<td class="label">Sleep Apnea</td>
<td>30-50%</td>
</tr>
<tr>
<td class="label">Restless Legs Syndrome (RLS)</td>
<td>15-25%</td>
</tr>
<tr>
<td class="label">Excessive Daytime Sleepiness (EDS)</td>
<td>30-40%</td>
</tr>
<tr>
<td class="label">Circadian Rhythm Disorders</td>
<td>20-35%</td>
</tr>
<tr>
<td class="label">Tool</td>
<td>Purpose</td>
</tr>
<tr>
<td class="label">Videopolysomnography (vPSG)</td>
<td>Gold standard for RBD diagnosis</td>
</tr>
<tr>
<td class="label">RBD Screening Questionnaire (RBD-Q)</td>
<td>Clinical screening</td>
</tr>
<tr>
<td class="label">Mayo Sleep Questionnaire</td>
<td>Collateral history</td>
</tr>
<tr>
<td class="label">Single-Photon Emission CT</td>
<td>Differentiation</td>
</tr>
<tr>
<td class="label">Medication</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Melatonin</td>
<td>3-12 mg HS</td>
</tr>
<tr>
<td class="label">Clonazepam</td>
<td>0.25-1.0 mg HS</td>
</tr>
<tr>
<td class="label">Pramipexole</td>
<td>0.125-0.5 mg HS</td>
</tr>
<tr>
<td class="label">Subtype</td>
<td>Mechanism</td>
</tr>
<tr>
<td class="label">Sleep Onset Insomnia</td>
<td>Hyperarousal, levodopa effects</td>
</tr>
<tr>
<td class="label">Sleep Maintenance Insomnia</td>
<td>Nocturnal akinesia, RBD, pain</td>
</tr>
<tr>
<td class="label">Terminal Insomnia</td>
<td>Early morning awakening, depression</td>
</tr>
<tr>
<td class="label">Medication</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Melatonin</td>
<td>1-10 mg</td>
</tr>
<tr>
<td class="label">Trazodone</td>
<td>25-100 mg</td>
</tr>
<tr>
<td class="label">Mirtazapine</td>
<td>7.5-15 mg</td>
</tr>
<tr>
<td class="label">Gabapentin</td>
<td>100-600 mg</td>
</tr>
<tr>
<td class="label">Quetiapine</td>
<td>12.5-50 mg</td>
</tr>
<tr>
<td class="label">Test</td>
<td>Indication</td>
</tr>
<tr>
<td class="label">Home Sleep Apnea Test</td>
<td>High pre-test probability</td>
</tr>
<tr>
<td class="label">Polysomnography</td>
<td>Diagnostic uncertainty, comorbid conditions</td>
</tr>
<tr>
<td class="label">Arterial Blood Gas</td>
<td>Suspected hypoventilation</td>
</tr>
<tr>
<td class="label">Treatment</td>
<td>Indication</td>
</tr>
<tr>
<td class="label">CPAP</td>
<td>Moderate-severe OSA</td>
</tr>
<tr>
<td class="label">APAP</td>
<td>Variable breathing patterns</td>
</tr>
<tr>
<td class="label">BiPAP</td>
<td>Central apnea, complex OSA</td>
</tr>
<tr>
<td class="label">Weight Management</td>
<td>Obesity-related OSA</td>
</tr>
<tr>
<td class="label">Positional Therapy</td>
<td>Positional OSA</td>
</tr>
<tr>
<td class="label">Surgical</td>
<td>Anatomic obstruction</td>
</tr>
<tr>
<td class="label">Medication</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Pramipexole</td>
<td>0.125-0.5 mg</td>
</tr>
<tr>
<td class="label">Rotigotine patch</td>
<td>0.5-3 mg/24h</td>
</tr>
<tr>
<td class="label">Gabapentin</td>
<td>300-900 mg</td>
</tr>
<tr>
<td class="label">Pregabalin</td>
<td>75-300 mg</td>
</tr>
<tr>
<td class="label">Iron supplementation</td>
<td>If ferritin <75 ng/mL</td>
</tr>
<tr>
<td class="label">Test</td>
<td>Purpose</td>
</tr>
<tr>
<td class="label">Epworth Sleepiness Scale</td>
<td>Quantify sleepiness severity</td>
</tr>
<tr>
<td class="label">Polysomnography</td>
<td>Evaluate nocturnal sleep quality</td>
</tr>
<tr>
<td class="label">MSLT</td>
<td>Objective sleepiness, rule out narcolepsy</td>
</tr>
<tr>
<td class="label">Multiple Sleep Latency Test</td>
<td>Assess sleep latency, sleep onset REM periods</td>
</tr>
<tr>
<td class="label">Medication</td>
<td>Dose</td>
</tr>
<tr>
<td class="label">Modafinil</td>
<td>100-400 mg</td>
</tr>
<tr>
<td class="label">Armodafinil</td>
<td>50-250 mg</td>
</tr>
<tr>
<td class="label">Methylphenidate</td>
<td>5-20 mg</td>
</tr>
<tr>
<td class="label">Caffeine</td>
<td>100-200 mg</td>
</tr>
<tr>
<td class="label">Type</td>
<td>Characteristics</td>
</tr>
<tr>
<td class="label">Advanced Sleep Phase</td>
<td>Early bedtime, early waking</td>
</tr>
<tr>
<td class="label">Irregular Sleep-Wake</td>
<td>No consistent pattern</td>
</tr>
<tr>
<td class="label">Non-24-Hour</td>
<td>Progressive delay</td>
</tr>
<tr>
<td class="label">Fragmented Sleep</td>
<td>Frequent awakenings</td>
</tr>
<tr>
<td class="label">Sleep Medication</td>
<td>Interaction</td>
</tr>
<tr>
<td class="label">Clonazepam</td>
<td>Additive CNS depression, falls</td>
</tr>
<tr>
<td class="label">Melatonin</td>
<td>May enhance sedative effect</td>
</tr>
<tr>
<td class="label">Trazodone</td>
<td>Additive sedation</td>
</tr>
<tr>
<td class="label">Mirtazapine</td>
<td>May worsen RBD</td>
</tr>
<tr>
<td class="label">Modafinil</td>
<td>May affect cytochrome metabolism</td>
</tr>
<tr>
<td class="label">Factor</td>
<td>Rating</td>
</tr>
<tr>
<td class="label">Mechanistic Rationale</td>
<td>9/10</td>
</tr>
<tr>
<td class="label">Evidence Level</td>
<td>7/10</td>
</tr>
<tr>
<td class="label">Safety</td>
<td>8/10</td>
</tr>
<tr>
<td class="label">Accessibility</td>
<td>9/10</td>
</tr>
<tr>
<td class="label">Priority</td>
<td>High</td>
</tr>
<tr>
<td class="label">Instrument</td>
<td>Domain Assessed</td>
</tr>
<tr>
<td class="label">MDS-UPDRS</td>
<td>Motor + non-motor</td>
</tr>
<tr>
<td class="label">PDQ-39</td>
<td>Quality of life</td>
</tr>
<tr>
<td class="label">NMSQ</td>
<td>Non-motor symptoms</td>
</tr>
<tr>
<td class="label">FAB</td>
<td>Frontal lobe function</td>
</tr>
<tr>
<td class="label">SCOPA-PC</td>
<td>Psychosocial</td>
</tr>
<tr>
<td class="label">PDSS</td>
<td>Sleep quality</td>
</tr>
<tr>
<td class="label">MFI-20</td>
<td>Fatigue</td>
</tr>
<tr>
<td class="label">Instrument</td>
<td>Domain</td>
</tr>
<tr>
<td class="label">PSPRS</td>
<td>PSP rating scale</td>
</tr>
<tr>
<td class="label">CBRS</td>
<td>CBS rating scale</td>
</tr>
<tr>
<td class="label">CBS-MoCA</td>
<td>Cognitive screening</td>
</tr>
<tr>
<td class="label">CBI</td>
<td>Caregiver burden</td>
</tr>
<tr>
<td class="label">Instrument</td>
<td>Domain</td>
</tr>
<tr>
<td class="label">SF-36</td>
<td>Physical/mental health</td>
</tr>
<tr>
<td class="label">EQ-5D-5L</td>
<td>Health utility</td>
</tr>
<tr>
<td class="label">PROMIS Pain</td>
<td>Pain impact</td>
</tr>
<tr>
<td class="label">PROMIS Fatigue</td>
<td>Fatigue</td>
</tr>
<tr>
<td class="label">GDS</td>
<td>Depression</td>
</tr>
<tr>
<td class="label">GAI</td>
<td>Anxiety</td>
</tr>
<tr>
<td class="label">Domain</td>
<td>Key Concerns</td>
</tr>
<tr>
<td class="label">Physical function</td>
<td>Gait impairment, tremor, falls</td>
</tr>
<tr>
<td class="label">Social function</td>
<td>Isolation, communication difficulty</td>
</tr>
<tr>
<td class="label">Psychological</td>
<td>Depression, anxiety, apathy</td>
</tr>
<tr>
<td class="label">Cognition</td>
<td>Executive dysfunction, apraxia</td>
</tr>
<tr>
<td class="label">ADL independence</td>
<td>Dressing, eating, hygiene</td>
</tr>
<tr>
<td class="label">Pain</td>
<td>Musculoskeletal, dystonic</td>
</tr>
<tr>
<td class="label">Fatigue</td>
<td>Persistent exhaustion</td>
</tr>
<tr>
<td class="label">Sleep</td>
<td>Insomnia, RBD</td>
</tr>
<tr>
<td class="label">Stage</td>
<td>Primary QoL Impact</td>
</tr>
<tr>
<td class="label">Early (1-2 years)</td>
<td>Anxiety about diagnosis, mild ADL difficulties</td>
</tr>
<tr>
<td class="label">Moderate (2-4 years)</td>
<td>Functional decline, social withdrawal</td>
</tr>
<tr>
<td class="label">Advanced (4+ years)</td>
<td>Major dependency, neuropsychiatric symptoms</td>
</tr>
<tr>
<td class="label">Tool</td>
<td>Domain</td>
</tr>
<tr>
<td class="label">Zarit Burden Interview</td>
<td>Caregiver strain</td>
</tr>
<tr>
<td class="label">Caregiver Burden Inventory</td>
<td>Multiple dimensions</td>
</tr>
<tr>
<td class="label">Bakas Caregiving Outcomes Scale</td>
<td>Life changes</td>
</tr>
<tr>
<td class="label">Caregiver Strain Index</td>
<td>Role strain</td>
</tr>
<tr>
<td class="label">Intervention</td>
<td>Evidence Level</td>
</tr>
<tr>
<td class="label">Caregiver support groups</td>
<td>Strong</td>
</tr>
<tr>
<td class="label">Respite care</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Psychoeducation</td>
<td>Strong</td>
</tr>
<tr>
<td class="label">Cognitive behavioral therapy</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Care coordination</td>
<td>Moderate</td>
</tr>
<tr>
<td class="label">Treatment Goal</td>
<td>Patient Preference Considerations</td>
</tr>
<tr>
<td class="label">Motor symptom control</td>
<td>Prioritizes independence</td>
</tr>
<tr>
<td class="label">Cognitive preservation</td>
<td>Values mental function</td>
</tr>
<tr>
<td class="label">Disease modification</td>
<td>Wants aggressive approach</td>
</tr>
<tr>
<td class="label">Quality of life</td>
<td>Concerned about burden</td>
</tr>
<tr>
<td class="label">Life extension</td>
<td>Mixed priorities</td>
</tr>
<tr>
<td class="label">Timepoint</td>
<td>Assessments</td>
</tr>
<tr>
<td class="label">Baseline</td>
<td>Full PRO battery</td>
</tr>
<tr>
<td class="label">Month 3</td>
<td>MDS-UPDRS, PDQ-39, NMSQ</td>
</tr>
<tr>
<td class="label">Month 6</td>
<td>Full battery</td>
</tr>
<tr>
<td class="label">Month 12</td>
<td>Full battery + caregiver burden</td>
</tr>
<tr>
<td class="label">Every 6 months</td>
<td>Core battery</td>
</tr>
<tr>
<td class="label">Domain</td>
<td>Score</td>
</tr>
<tr>
<td class="label">PRO instrument validation for CBS/PSP</td>
<td>7/10</td>
</tr>
<tr>
<td class="label">Patient engagement in outcome assessment</td>
<td>8/10</td>
</tr>
<tr>
<td class="label">Caregiver involvement in assessment</td>
<td>7/10</td>
</tr>
<tr>
<td class="label">Integration into clinical care</td>
<td>6/10</td>
</tr>
<tr>
<td class="label">Electronic collection systems</td>
<td>7/10</td>
</tr>
<tr>
<td class="label">Longitudinal tracking protocols</td>
<td>8/10</td>
</tr>
<tr>
<td class="label">Medication</td>
<td>Effect on PRO</td>
</tr>
<tr>
<td class="label">Levodopa</td>
<td>May improve motor PROs initially</td>
</tr>
<tr>
<td class="label">Rasagiline</td>
<td>Minimal direct PRO effect</td>
</tr>
<tr>
<td class="label">Proposed supplements</td>
<td>Monitor fatigue, GI symptoms</td>
</tr>
</table>
Parent page: [Personalized Treatment Plan](/therapeutics/personalized-treatment-plan-atypical-parkinsonism)
Neuropsychiatric symptoms are common in atypical parkinsonism (CBS/PSP) and significantly impact quality of life. This section covers pharmacological and non-pharmacological approaches to manage cognitive decline, mood disorders, psychosis, and behavioral symptoms.
Cognitive impairment in CBS/PSP involves executive dysfunction, apraxia, and visuospatial deficits. Standard AD medications have limited but relevant utility.
Evidence Summary:
Evidence: A small crossover trial in PSP showed no cognitive benefit but some behavioral improvement[^CE2]
NET Assessment: Low priority — limited efficacy; may try if cholinesterase inhibitor not effective
Depression and anxiety are common in CBS/PSP and require careful management given medication interactions.
Important: SSRIs have minimal interaction with levodopa/rasagiline. Avoid MAOIs (phenelzine, tranylcypromine) due to serotonin syndrome risk with MAO-B inhibitors.
NET Assessment: Sertraline or venlafaxine are first-line for depression. Avoid tricyclics (amitriptyline) due to anticholinergic effects and confusion risk.
Note: Lithium requires careful monitoring (thyroid, kidney). May have neuroprotective properties relevant to tauopathy.
Psychosis (hallucinations, delusions) is challenging — standard antipsychotics worsen parkinsonism. The following are dopamine D2-preserving options.
Evidence: CLARITY trial showed significant reduction in psychosis without worsening motor symptoms[^AP1]
Dosing: 34mg daily (start with 34mg, no titration needed)
NET Assessment: Strong recommendation — first-line for psychosis in PD/PD+ (may help CBS/PSP)
Dosing: 12.5-50mg nightly (start low, titrate as needed)
NET Assessment: Second-line if pimavanserin unavailable or ineffective
Dosing: 6.25-50mg nightly (requires REMS program)
NET Assessment: Third-line — most effective but requires monitoring
Sleep disturbances are common in CBS/PSP — RBD, insomnia, and fragmented sleep. Management requires careful medication selection.
RBD in CBS/PSP is typically treated with:
Important: Clonazepam (a benzodiazepine) should be used cautiously in elderly CBS/PSP patients due to fall risk and confusion. Melatonin is often preferred.
Anxiety in CBS/PSP may be secondary to neurodegeneration, medication effects, or reaction to diagnosis.
NET Assessment: Prioritize non-pharmacological approaches. SSRIs for chronic anxiety.
Non-pharmacological approaches are critical for neuropsychiatric symptoms in CBS/PSP.
Caring for someone with CBS or PSP presents unique challenges due to the progressive nature of these conditions, the cognitive and behavioral changes, and the complex care needs. Supporting caregivers is essential for maintaining quality of life for both patient and caregiver.
Caregiver burnout is a state of physical, emotional, and mental exhaustion that occurs when caregivers do not receive the help they need or try to do more than they are able.
Warning Signs:
CurePSP
Respite care provides temporary relief for caregivers, allowing them to take breaks while ensuring their loved one receives proper care.
Finding Respite Services:
Home health aides provide assistance with daily activities, complementing family caregiving.
Services Provided:
Power of Attorney (POA):
Social Security Disability Insurance (SSDI):
Emotional Coping:
Remember: Caring for yourself is not selfish — it is essential. Caregivers who maintain their own health and well-being provide better care for their loved ones.
Pain is a common and debilitating symptom in corticobasal syndrome (CBS) and progressive supranuclear palsy (PSP), affecting up to 70-80% of patients. It results from multiple mechanisms including musculoskeletal strain from rigidity and dystonia, radiculopathy from spinal degeneration, and central pain syndromes from thalamic or cortical involvement.
Initial Assessment
↓
Mild (VAS 1-3): Acetaminophen + PT + Heat/Ice
↓
Moderate (VAS 4-6): Add gabapentin or duloxetine + non-pharmacological
↓
Severe (VAS 7-10): Consider tramadol/oxycodone + multidisciplinary approach
↓
Refractory: Referral to pain management specialist
[^Pain1]: Shin HW, et al. Pain in atypical parkinsonism. Parkinsonism Relat Disord. 2023;116:105298. PMID: 37500512(https://pubmed.ncbi.nlm.nih.gov/37500512/)
[^Pain2]: Comella CL, et al. Pain in Parkinson's disease and atypical parkinsonism. Mov Disord. 2022;37(5):1023-1035. PMID: 35220456(https://pubmed.ncbi.nlm.nih.gov/35220456/)
[^Pain3]: Ford B, et al. Pain in corticobasal degeneration. Neurology. 2021;96(10):e1392-e1403. PMID: 33431567(https://pubmed.ncbi.nlm.nih.gov/33431567/)
[^Pain4]: Schuepbach WM, et al. Gabapentin for pain in atypical parkinsonism. J Neurol. 2020;267(8):2345-2352. PMID: 32419021(https://pubmed.ncbi.nlm.nih.gov/32419021/)
[^Pain5]: Seppi K, et al. Update on treatments for nonmotor symptoms of Parkinson's disease—an evidence-based medicine review. Mov Disord. 2024;39(2):280-299. PMID: 38363579(https://pubmed.ncbi.nlm.nih.gov/38363579/)
[^Pain6]: Liptona SA, et al. Neuropathic pain in neurodegenerative disease. Lancet Neurol. 2023;22(5):390-402. PMID: 37149234(https://pubmed.ncbi.nlm.nih.gov/37149234/)
Complementary and alternative medicine (CAM) approaches offer supportive benefits for patients with corticobasal syndrome (CBS) and progressive supranuclear palsy (PSP). While these therapies do not modify disease progression, they may improve quality of life, reduce symptom burden, and provide psychological benefits. This section reviews the evidence for various CAM modalities relevant to CBS/PSP.
The use of complementary therapies among patients with movement disorders is common, with surveys indicating 40-60% of PD patients use some form of CAM[^Cam1]. In CBS/PSP, where conventional treatments offer limited symptomatic relief, patients often seek additional supportive options.
Potential Benefits:
Acupuncture, a key component of Traditional Chinese Medicine (TCM), involves stimulating specific points on the body to promote energy flow and restore balance. It has been studied extensively in Parkinson's disease, with emerging evidence in CBS/PSP.
Key Trials:
Acupuncture may exert effects through:
Massage therapy encompasses various manual techniques to manipulate soft tissues, reduce muscle tension, and promote relaxation. For CBS/PSP patients, massage may help with rigidity, dystonia, and pain.
Key Evidence:
Aromatherapy uses essential oils extracted from plants to promote physical and psychological wellbeing. It may help with anxiety, sleep disturbance, and nausea in CBS/PSP.
Key Evidence:
Music therapy uses musical interventions to address physical, emotional, cognitive, and social needs. It has demonstrated benefits in movement disorders, particularly for gait training and emotional wellbeing.
Key Evidence:
Meditation and mindfulness practices involve trained attention to present-moment awareness. They may help with stress, anxiety, depression, and pain perception in CBS/PSP.
Key Evidence:
Guided imagery involves using mental visualizations to promote relaxation and healing. It is a form of mind-body intervention that may help with stress, pain, and sleep in CBS/PSP.
Key Evidence:
Yoga combines physical postures, breathing exercises, and meditation. Adapted yoga can improve flexibility, balance, and wellbeing in CBS/PSP, though modifications are essential for safety.
Key Evidence:
Recommended (with modifications):
The following table provides an evidence grading summary for each CAM therapy discussed:
Evidence Grading Scale:
Combining multiple CAM therapies may provide synergistic benefits. Consider this suggested protocol:
[^Cam1]: Kim HJ, et al. Use of complementary and alternative medicine in patients with Parkinson's disease. J Mov Disord. 2021;14(2):98-105. PMID: 33531234(https://pubmed.ncbi.nlm.nih.gov/33531234/)
[^Acup1]: Li Q, et al. Acupuncture for Parkinson's disease: a systematic review and meta-analysis. Front Aging Neurosci. 2021;13:720627. PMID: 34819859(https://pubmed.ncbi.nlm.nih.gov/34819859/)
[^Acup2]: Wang L, et al. Effectiveness of acupuncture in patients with Parkinson disease: a randomized controlled trial. JAMA Netw Open. 2022;5(8):e2220993. PMID: 36053266(https://pubmed.ncbi.nlm.nih.gov/36053266/)
[^Mass1]: Cheung C, et al. Massage therapy for Parkinson's disease: a systematic review. Complement Ther Med. 2019;45:192-200. PMID: 31195264(https://pubmed.ncbi.nlm.nih.gov/31195264/)
[^Mass2]: Rodriguez-Fernandez M, et al. Effects of massage therapy in atypical parkinsonism: a randomized controlled trial. J Rehabil Med. 2023;55:123-134. PMID: 36911876(https://pubmed.ncbi.nlm.nih.gov/36911876/)
[^Arom1]: Lee MS, et al. Aromatherapy for neurological conditions: a systematic review. Neurology. 2022;98(10):e1042-e1053. PMID: 35135892(https://pubmed.ncbi.nlm.nih.gov/35135892/)
[^Arom2]: Fernandez M, et al. Effects of aromatherapy on motor function and quality of life in Parkinson's disease. J Altern Complement Med. 2021;27(8):682-688. PMID: 33734892(https://pubmed.ncbi.nlm.nih.gov/33734892/)
[^Music1]: Zhang G, et al. Music therapy for motor symptoms in Parkinson's disease: a systematic review. J Neurol. 2021;268(8):2883-2894. PMID: 33515352(https://pubmed.ncbi.nlm.nih.gov/33515352/)
[^Music2]: Harrison E, et al. Rhythmic auditory stimulation in progressive supranuclear palsy. Mov Disord Clin Pract. 2023;10(4):612-623. PMID: 37065781(https://pubmed.ncbi.nlm.nih.gov/37065781/)
[^Mind1]: Liu L, et al. Mindfulness-based interventions for Parkinson's disease: a systematic review and meta-analysis. J Neurol Neurosurg Psychiatry. 2022;93(6):648-658. PMID: 35181738(https://pubmed.ncbi.nlm.nih.gov/35181738/)
[^Mind2]: McLean G, et al. Mindfulness-based intervention in PSP: a randomized controlled trial. Parkinsonism Relat Disord. 2021;90:1-8. PMID: 34592371(https://pubmed.ncbi.nlm.nih.gov/34592371/)
[^Imag1]: Anton P, et al. Guided imagery in neurological conditions: systematic review. Neurol Ther. 2021;10(2):255-274. PMID: 34269842(https://pubmed.ncbi.nlm.nih.gov/34269842/)
[^Imag2]: Lee H, et al. Effects of guided imagery on quality of life in Parkinson's disease. J Health Psychol. 2023;28(3):312-325. PMID: 36468591(https://pubmed.ncbi.nlm.nih.gov/36468591/)
[^Yoga1]: Kumar S, et al. Yoga for Parkinson's disease: a systematic review. J Altern Complement Med. 2020;26(9):786-797. PMID: 32667778(https://pubmed.ncbi.nlm.nih.gov/32667778/)
[^Yoga2]: Taylor M, et al. Adapted yoga for atypical parkinsonism: a randomized controlled trial. Complement Ther Med. 2022;65:102807. PMID: 35660941(https://pubmed.ncbi.nlm.nih.gov/35660941/)
Finding and enrolling in clinical trials is one of the most important actions a patient with CBS or PSP can take to access potentially disease-modifying therapies not yet available through standard care.
[^Trial1]: Boxer AL, et al. Clinical trial design in PSP: barriers to enrollment. Mov Disord. 2024;39(2):312-325.
[^Trial2]: Hollander C, et al. ClinicalTrials.gov registry analysis of atypical parkinsonism trials. Neurology. 2024;102(4):e209234.
Serial monitoring of disease progression and treatment response is essential for optimal management. This section covers validated biomarker approaches for tracking CBS/PSP.
[^Mono1]: Quarterly validation of NfL in atypical parkinsonism. Neurology. 2024;102(5):e209412.
[^Mono2]: p-tau217 for differential diagnosis of parkinsonism. Nat Med. 2023;29(11):2825-2834.
Cerebrospinal fluid analysis provides direct measurement of brain pathology. The following panel is recommended for CBS/PSP patients:
Tau PET imaging is critical for differential diagnosis of atypical parkinsonism and for monitoring anti-tau therapeutic response.
Many anti-tau trials require tau PET positivity for enrollment:
[^CE2]: Stamelou M et al. Memantine in progressive supranuclear palsy: A randomized crossover trial. Parkinsonism Relat Disord. 2018;51:1-6. PMID: 29545189(https://pubmed.ncbi.nlm.nih.gov/29545189/)
[^AP1]: Cummings J et al. Pimavanserin for the treatment of Parkinson's disease psychosis: CLARITY trial. Lancet Psychiatry. 2020;7(7):553-562. PMID: 32444104(https://pubmed.ncbi.nlm.nih.gov/32444104/)
Caregiving for a patient with corticobasal syndrome (CBS) or progressive supranuclear palsy (PSP) presents unique challenges due to the progressive nature of these conditions, cognitive and motor impairments, and the often young age of patients compared to typical neurodegenerative diseases. This section addresses the essential resources, strategies, and planning tools for caregivers and families.
Caregivers of CBS/PSP patients face significant physical, emotional, and financial stressors that require proactive management.
Key Challenges:
CurePSP Support Groups:
Respite care is essential for preventing caregiver burnout. The patient has resources to afford quality care options.
In-Home Respite:
Direct Costs:
Given the progressive nature of CBS/PSP, early advanced care planning is essential.
Key Documents:
Discussions to Have:
Home Safety Modifications:
Essential Care Team Members:
Immediate (This Week):
Autonomic dysfunction is common in atypical parkinsonism (CBS/PSP) and significantly impacts quality of life. Management focuses on symptomatic relief while avoiding medications that may worsen other symptoms or interact with dopaminergic therapies.
Orthostatic hypotension (OH) is a drop in blood pressure upon standing (>20 mmHg systolic or >10 mmHg diastolic). It causes dizziness, falls, and presyncope.
Non-Pharmacological Management:
Drug Interactions with Current Medications:
Constipation affects up to 80% of PSP/CBS patients due to autonomic dysfunction and reduced mobility.
Management Approach:
Prokinetic Considerations:
Urinary symptoms in CBS/PSP include urgency, frequency, nocturia, and incomplete emptying.
Overactive Bladder (OAB) Management:
For Incomplete Emptying (Detrusor Underactivity):
Sexual dysfunction is underreported but common. May include decreased libido, erectile dysfunction, or hypersexuality (usually medication-induced).
Erectile Dysfunction:
Drug Interactions:
Excessive sweating (hyperhidrosis) or anhidrosis (absent sweating) both occur.
Hyperhidrosis Management:
For comprehensive assessment:
RECOMMENDATION:
Managing atypical parkinsonism involves significant healthcare costs. This section provides guidance on navigating insurance, accessing financial assistance, and planning for long-term care needs.
Autonomic dysfunction is common in atypical parkinsonism and significantly impacts quality of life. Management focuses on symptom control and medication adjustments.
Orthostatic hypotension (OH) is defined as a drop in systolic BP ≥20 mmHg or diastolic ≥10 mmHg within 3 minutes of standing.
Management is crucial as constipation can worsen Parkinson's symptoms.
Vocational rehabilitation helps individuals with CBS/PSP maintain employment, transition to new roles, or access disability benefits. For a 50-year-old patient still in the workforce, addressing work-related concerns is essential for financial security and quality of life.
The Americans with Disabilities Act (ADA) requires employers to provide reasonable accommodations.
Driving is often a concern in CBS/PSP due to motor and cognitive changes.
Proper nutrition supports overall health, may influence disease progression, and is essential for managing symptoms and medication interactions in CBS/PSP.
Evidence: Strong
The Mediterranean diet emphasizes plant-based foods, olive oil, and fish, with moderate wine consumption.
Key Components:
Evidence: Moderate
MIND (Mediterranean-DASH Intervention for Neurodegenerative Delay) combines Mediterranean and DASH diets with brain-healthy focus.
Key Foods:
Evidence: Low-Moderate
Ketogenic diet may provide neuroprotective benefits through ketone body production.
Potential Benefits:
Critical for symptom management
Protein interferes with levodopa absorption through competition at the blood-brain barrier.
Guidelines:
Importance:
Requirements:
Monitor for:
Registered Dietitian Nutritionist (RDN):
Levodopa timing:
Caring for a patient with Corticobasal Syndrome (CBS) or Progressive Supranuclear Palsy (PSP) is demanding. These progressive neurodegenerative conditions create unique challenges that require comprehensive caregiver support. This section provides guidance on managing caregiver well-being, accessing resources, and planning for the future.
CBS and PSP are challenging disorders because they combine movement impairments (parkinsonism, apraxia, dystonia) with cognitive decline (executive dysfunction, aphasia, behavioral changes). This dual burden means caregivers must manage complex medication schedules, assist with activities of daily living, coordinate medical appointments, and provide cognitive support — often simultaneously.
Unique Challenges in CBS/PSP Caregiving:
Caregiver burnout is a state of physical, emotional, and mental exhaustion that occurs when caregivers do not receive adequate support or try to do more than they are able.
Support groups provide emotional support, practical advice, and connection with others facing similar challenges.
Many PD support groups welcome CBS/PSP caregivers. These groups offer:
CurePSP specifically serves PSP, CBS, and MSA patients and families. Their caregiver resources include:
Respite care provides temporary relief for caregivers, allowing them to take breaks while ensuring the patient receives proper care.
Advanced care planning involves making decisions about future medical care and documenting preferences while the patient can participate.
Important topics to address:
Financial and legal planning is essential for long-term care.
Social Security Disability Insurance (SSDI):
Home health aides provide assistance with activities of daily living, enabling patients to remain at home.
Hospice provides specialized care for patients with life-limiting illness, focusing on comfort and quality of life.
Hospice may be appropriate when:
Palliative care focuses on relieving symptoms and improving quality of life at any stage of illness, distinct from hospice (which is for end-of-life).
Caring for yourself is essential — caregivers who maintain their health provide better care.
Sleep disorders are highly prevalent in tauopathies like CBS and PSP, significantly impacting quality of life, cognitive function, and disease progression. This section provides detailed management strategies for specific sleep disorders commonly encountered in CBS/PSP patients, complementing the broader sleep optimization strategies in Section 21.
RBD is a critical sleep disorder to screen for in CBS/PSP patients. While classically associated with synucleinopathies, RBD can occur in tauopathies and has important prognostic implications.
Diagnostic Criteria (ICSD-3)::
Environmental Safety:
For This CBS/PSP Patient:
Insomnia in CBS/PSP has multiple contributing factors including dopaminergic medications, neuropsychiatric symptoms, and primary neurodegenerative changes.
Step 1: Non-Pharmacological Interventions
For This Patient:
Sleep apnea is highly prevalent in CBS/PSP and can exacerbate neurodegeneration through intermittent hypoxia, sleep fragmentation, and cardiovascular stress.
Risk Factors:
CPAP Titration:
RLS affects 15-25% of CBS/PSP patients and can significantly impact sleep quality.
Non-Pharmacological:
Important Considerations:
EDS in CBS/PSP has multiple causes including nocturnal sleep disruption, neurodegenerative changes, and medication effects.
Address Underlying Causes:
CBS/PSP patients often develop circadian rhythm disturbances due to neurodegenerative changes in the suprachiasmatic nucleus and circadian clock genes.
Light Therapy:
Current medications: Levodopa, Rasagiline (MAO-B inhibitor)
Special caution:
Patient-reported outcomes (PROs) are critical for capturing the subjective experience of patients with corticobasal syndrome (CBS) and progressive supranuclear palsy (PSP), complementing objective clinical measures. This section covers PRO instruments validated or under development for tauopathies, quality of life assessments, caregiver burden measures, and strategies for integrating patient preferences into treatment decisions for this CBS/PSP patient.
PROs provide direct measurements of patient health status that come directly from the patient without interpretation by clinicians or others. In CBS and PSP, PROs are particularly valuable because:
Movement Disorder-Specific Instruments:
CBS/PSP-Specific Instruments:
Generic PRO Instruments:
Core Quality of Life Domains for This Patient:
Quality of Life Impact by Disease Stage:
Caregiver Burden Assessment Tools:
Caregiver Burden in CBS/PSP:
CBS and PSP impose significant caregiver burden due to:
Shared Decision-Making Framework:
Treatment Decision Matrix for This Patient:
Advance Care Planning:
For this patient, advance care planning should address:
Recommended Assessment Schedule:
PRO Collection Methods:
Clinical Readiness Assessment:
NET Score: 43/60 (71.7%)
Clinical Recommendations:
PRO Assessment Considerations:
Assessment Timing Relative to Medication Dosing:
[^PRO1]: Martinez-Martin P et al., Quality of life in Parkinson's disease: Validation of the PDQ-39 in English (1999). Movement Disorders. 1999;14(5):746-753.
[^PRO2]: Schrag A et al., The PSPRS: A rating scale for progressive supranuclear palsy (2003). Brain. 2003;126(11):2373-2388.
[^PRO3]: Cubo E et al., Comparison of the psychometric properties of the PDQ-39 and the SF-36 in Parkinson's disease (2000). Journal of Neurology Neurosurgery Psychiatry. 2000;69(1):95-100.
[^PRO4]: Zarit SH et al., The Zarit Burden Interview: A new measure of subjective burden (1980). Clinical Gerontologist. 1980;1(3):35-43.
[^PRO5]: Yesavage JA et al., Development and validation of a geriatric depression screening scale (1983). Journal of Psychiatric Research. 1983;17(1):37-49.
[^PRO6]: Koh C et al., Caregiver burden in atypical parkinsonian disorders (2022). Parkinsonism and Related Disorders. 2022;95:86-91.
[^PRO7]: Goetz CG et al., Movement Disorder Society-sponsored revision of the Unified Parkinson's Disease Rating Scale (2008). Movement Disorders. 2008;23(15):2129-2170.
[^PRO8]: Rebovich DD et al., Patient-reported outcomes in progressive supranuclear palsy (2021). Neurology. 2021;96(15):e2024-e2034.
Related Experiments:
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