Living with Progressive supranuclear palsy
A brain disorder that affects balance, eye movement, speech, and thinking, usually starting in a person's 60s.
Understanding Progressive supranuclear palsy
Signs usually appear in mid to late adulthood, most often in the 60s. Loss of balance and frequent falls are common early signs. Movements become slow and stiff over time. Eye movement problems, especially trouble moving the eyes up and down, usually develop several years later. Many people also have changes in mood and behavior and trouble with attention and planning.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Poor balance and frequent falls
- Slow, slurred speech (dysarthria)
- Trouble swallowing (dysphagia)
- Trouble moving the eyes up and down (vertical gaze palsy)
- Loss of interest or enthusiasm (apathy)
- Trouble with attention, planning, and problem solving
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists, eye disease specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Association for Frontotemporal Degeneration, CurePSP and Parkinson's Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: The Association for Frontotemporal Degeneration, CurePSP, Parkinson's Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with The Association for Frontotemporal Degeneration and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in genes cause this condition. It doesn't name a gene or describe how it is inherited yet.
Also known as: progressive supranuclear ophthalmoplegia; psp - progressive supranuclear palsy; psp syndrome; steele-richardson-olszewski disease; steele-richardson-olszewski syndrome
Patient organizations
- The Association for Frontotemporal DegenerationProgressive supranuclear palsy · United States
- CurePSPProgressive supranuclear palsy · United States
- Parkinson's FoundationProgressive supranuclear palsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Progressive supranuclear palsy.
Explore research for Progressive supranuclear palsy
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