Symptom Management and Building Your Care Team

Managing atypical PSP requires a shift in perspective. While it is true that there is currently no cure or “disease-modifying” treatment that can stop the progression of the disease ^[1][2], there are many ways to manage symptoms, maintain independence, and significantly improve quality of life ^[3]. Success lies in building a multidisciplinary care team—a group of specialists working together to address every facet of the condition ^[4].

Tip for your first appointment: Bring a list of your current medications, any previous MRI discs (not just the reports), and a written timeline of when your symptoms first started.

Pharmacological Symptom Management

Medication in PSP is often used “off-label” to address specific symptoms rather than the underlying disease ^[2].

• The Levodopa Trial: For those with the PSP-Parkinsonism (PSP-P) variant, doctors often prescribe levodopa (the primary medication for Parkinson’s disease) ^[5]. While many patients with atypical PSP see a moderate improvement in stiffness and movement early on, this response is typically “transient,” meaning it may fade after a few years as the disease progresses ^[6][7].
• Managing Mood and Behavior: Apathy (a loss of interest or motivation) and depression are very common in all forms of PSP ^[8][9]. These are not just emotional reactions to a diagnosis; they are biological results of the disease ^[8]. Antidepressants and other neuropsychiatric medications can be highly effective in managing these symptoms ^[8][10].
• Other Symptoms: Medications can also be used to manage drooling (sialorrhea), sleep disturbances, and pseudobulbar affect (sudden, uncontrollable episodes of crying or laughing) ^[11][12].

Clinical Trials and Research

Because the underlying cause of PSP involves the tau protein, it shares biological similarities with Alzheimer’s disease. Therefore, research into tau-targeted therapies is ongoing. While standard treatments manage symptoms, you may want to ask your neurologist about participating in clinical trials or observational registries. Engaging in research can offer a sense of agency and hope ^[13].

The Essential Care Team and Practical Strategies

Because PSP affects movement, speech, and daily living, three types of therapy are considered the “gold standard” of care.

1. Physical Therapy (PT)

PT focuses on maintaining mobility and safety. Unlike other conditions, PSP causes a unique “backwards” instability ^[14].

• Crucial Warning on Walkers: Do not purchase a standard, lightweight pharmacy walker without a PT evaluation. Because PSP patients tend to fall backward, they often pull lightweight walkers backward on top of themselves, increasing the severity of injuries. A PT will recommend heavily weighted or specialized walkers designed for this specific instability ^[3][15].
• Managing the “Rocket Sign”: If you experience impulsivity and suddenly stand up without thinking, a PT can teach you strategies like mentally counting to three or tapping your knees before standing ^[9].
• Unfreezing Gait: For those with PSP-PGF, freezing episodes can be terrifying. Therapists can provide visual cues (like a laser-line cane that gives you a target to step over) or auditory cues (like a metronome) to help “unfreeze” your feet ^[16].

2. Speech-Language Pathology (SLP)

SLP is essential for managing communication issues and dysphagia (difficulty swallowing) ^[17].

• Empowering Swallow Safety: Early SLP intervention is critical because swallowing difficulties can lead to aspiration pneumonia (when food or liquid enters the lungs) ^[17]. Rather than waiting for a crisis, an SLP will teach you proactive, empowering techniques right away—such as the “chin-tuck method” or taking smaller sips—to keep eating safe and enjoyable for as long as possible ^[18].

3. Occupational Therapy (OT)

OT helps adapt your home environment and daily routines—such as dressing or eating—to maintain independence for as long as possible ^[3].

Vetting Your Care Team

When meeting with potential specialists, use these questions to ensure they have the expertise needed for atypical PSP:

• “How familiar are you with the 2017 MDS diagnostic criteria for PSP?”
• “Do you have experience treating atypical variants like PSP-P or PSP-PGF specifically, or mostly classic Parkinson’s?”
• “Can you coordinate care with other specialists, like my speech therapist and neurologist?”
• “Are you open to discussing palliative care and quality-of-life goals as the disease progresses?” ^[13]