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Neurology · Classic Progressive Supranuclear Palsy

Your Guide to Classic Progressive Supranuclear Palsy (PSP-RS)

At a Glance

Classic Progressive Supranuclear Palsy (PSP-RS) causes frequent backward falls and difficulty looking up or down. Often initially misdiagnosed as Parkinson's, it requires specialized care focused on physical therapy, vision aids like prism glasses, and early management of swallowing issues.

Receiving a diagnosis of Progressive Supranuclear Palsy - Richardson Syndrome (PSP-RS) can feel overwhelming, especially if you have spent years searching for answers or were previously misdiagnosed with Parkinson’s disease. This resource guide is designed to empower you, your family, and your caregivers with clear, evidence-based information about what PSP-RS is and how to manage it.

Because PSP-RS involves complex physical, cognitive, and emotional changes, navigating this condition requires a team approach. This guide will help you understand the biology of the disease, recognize its hallmark signs, build the right medical team, and plan for the future.

Please use the links below to navigate through the different sections of this guide:

Remember, while there is currently no cure for PSP-RS, there are many ways to manage symptoms, maximize your independence, and maintain your quality of life. Engaging with your care team early and relying on the support of your loved ones will be your most powerful tools on this journey.

Common questions in this guide

Why is PSP-RS often misdiagnosed as Parkinson's disease?
Early symptoms of PSP-RS can closely resemble Parkinson's disease, leading to frequent misdiagnoses. However, unlike Parkinson's, PSP-RS typically does not improve with levodopa medication and features unique physical signs like backward falls and difficulty moving the eyes vertically.
What are the first signs of Classic Progressive Supranuclear Palsy?
Hallmark signs of PSP-RS include vertical gaze palsy (an inability to look up or down), frequent backward falls, and the 'rocket sign,' which is a tendency to stand up too quickly and lose balance.
What does the hummingbird sign mean on my MRI?
The 'hummingbird sign' refers to a specific shape seen on an MRI scan of the brain in people with PSP-RS. This distinct imaging marker helps doctors confirm the diagnosis and distinguish it from other neurological conditions.
How are the symptoms of PSP-RS treated?
While there is no cure, physical therapy is vital for managing balance issues and maintaining mobility. Additionally, specialized prism glasses can help compensate for vertical gaze palsy, making reading and walking safer.
Why do I need to monitor my swallowing with PSP-RS?
As PSP-RS progresses, it often weakens the muscles used for swallowing. Monitoring and managing these swallowing difficulties early is critical to prevent dangerous complications like choking and pneumonia.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Based on my current stage, should we connect with a local palliative care team to help map out a long-term symptom management plan?
  2. 2.Are there any clinical trials for 4R tauopathies that I might be eligible for?
  3. 3.Can you connect my family with a medical social worker or a caregiver support group specializing in atypical parkinsonism?

Questions For You

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This guide provides educational information about Classic Progressive Supranuclear Palsy (PSP-RS) and is not a substitute for professional medical advice. Always consult your neurologist or palliative care team about your specific symptoms and symptom management plan.

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