As PSP progresses, most people develop blurring of vision and problems controlling eye movement. This can lead to involuntarily closing the eyes; prolonged or infrequent blinking; or difficulty opening the eyes. Some people have trouble maintaining eye contact during a conversation.
Other issues develop as the disease advances, including slow movement (bradykinesia), clumsiness, and stiffness. These problems worsen with time, with most affected people ultimately needing a wheelchair. Weakening of the muscles in the mouth, tongue and throat lead to slurred speech and difficulty swallowing. This often causes aspiration pneumonia, the most common cause of death in people with PSP.
This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.
|Medical Terms||Other Names||
|80%-99% of people have these symptoms|
|Abnormal synaptic transmission||0012535|
Swallowing difficulty[ more ]
|Neuronal loss in
|30%-79% of people have these symptoms|
Difficulty finding words
Loss of words[ more ]
Involuntary closure of eyelid
Spontaneous closure of eyelid[ more ]
Slowness of movements[ more ]
|Cerebral cortical atrophy||0002120|
|Delayed speech and language development||
Deficiency of speech development
Delayed language development
Delayed speech acquisition
Delayed speech development
Impaired speech and language development
Impaired speech development
Language development deficit
Late-onset speech development
Poor language development
Speech and language delay
Speech and language difficulties
Speech delay[ more ]
Poor memory[ more ]
|Slow saccadic eye movements||
Slow eye movements
|Vertical supranuclear gaze palsy||0000511|
|5%-29% of people have these symptoms|
Progressive dementia[ more ]
|1%-4% of people have these symptoms|
|Frontal release signs||0000743|
|Percent of people who have these symptoms is not available through HPO|
Difficulty articulating speech
Difficulty opening the eyelids
Abnormality of balance
Abnormality of equilibrium
Imbalanced walk[ more ]
Inability to speak
Muteness[ more ]
Extreme sensitivity of the eyes to light
Light hypersensitivity[ more ]
|Supranuclear gaze palsy||0000605|
If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.
If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.
You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Rare Disease Day at NIH on March 1, 2018
December 19, 2017
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
Should genetic testing be done for this disorder? There are 2 brothers who have been diagnosed with this and my daughter's father-in-law is one of them. The concern is for the children and grandchildren of this man. See answer
My mother was diagnosed with progressive supranuclear palsy. It took quite a long time to narrow it down to get this correctly diagnosed. She had every symptom of the disease, and she ended up unable to swallow. She passed away, suffering a horrible death. The question I have is could progressive supranuclear palsy be hereditary? See answer
My identical twin sister has been diagnosed with progressive supranuclear palsy (PSP). As it seems this disease may have a genetic cause, what is the chance that I would also develop PSP? And within what timeframe? See answer
I think that I may have progressive supranuclear palsy. How is it diagnosed and treated? See answer