Living with Atypical progressive supranuclear palsy syndrome
A rare brain condition that starts late in life and affects movement, speech, and thinking in unusual patterns.
Understanding Atypical progressive supranuclear palsy syndrome
It is a form of progressive supranuclear palsy (PSP) that does not follow the usual PSP pattern. Symptoms begin late in life. There are several types, depending on which problem comes first, such as parkinsonism, gait freezing, speech and language trouble, or eye movement problems.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slow movements and stiffness (parkinsonism)
- Eye movement problems, especially looking downward
- Falls and unsteady walking
- Freezing of gait
- Trouble with speech
- Changes in thinking (dementia)
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
CurePSP 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: CurePSP
- 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 CurePSP
- 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 (also called variants) cause this condition but doesn't list a specific gene or inheritance pattern.
Also known as: atypical psp syndrome
Patient organizations
- CurePSPAtypical progressive supranuclear palsy syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Atypical progressive supranuclear palsy syndrome.
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