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In this section, you or a loved one can find out more about medical treatments, research studies and practical information about progressive supranuclear palsy. Read on to find answers to some of your questions as well as links to other information. Being informed is an important first step towards becoming an active decision-maker in your care plan.
Progressive supranuclear palsy (PSP), sometimes called Steele-Richardson-Olszewski syndrome, is a relatively rare degenerative brain disease. The "supranuclear" and "palsy" part of the name refer to the eye muscle weakness that is characteristic of the disease. PSP affects many ways in which a person functions, including movement, balance, speech, mood and thinking. It is estimated that only three to six in every 100,000 people suffer from PSP. It is typically diagnosed in people who are over the age of 60.
While researchers are studying possible genetic and environmental links, the exact cause of PSP is unknown. The disease causes brain cells to deteriorate, especially those in the areas that control movement and thinking. Researchers have found that the deteriorating brain cells contain abnormal amounts of a protein called tau, which is also characteristic of other diseases, including Alzheimer’s disease.
PSP causes problems with walking, vision, speech, swallowing, thinking and mood regulation, contributing to even more serious problems like pneumonia, head injuries, choking and fractures. PSP is often misdiagnosed because of its initial similarity to Parkinson's disease. However, there are differences. PSP patients typically stand exceptionally straight (or tilt their heads, and sometimes fall backward), while Parkinson's disease patients typically bend forward. Tremor is also less common in PSP than in Parkinson's disease. There is a type of PSP called "PSP-parkinsonism" that more closely resembles Parkinson's disease in its early stages, with fewer balance and behaviour issues and more tremor. PSP typically progresses more quickly than Parkinson's disease.
PSP affects the brain and many parts of the body controlled by the brain, and may mimic both Parkinson's disease and dementia.
The most common symptoms are:
Effects on individuals can vary, but PSP will typically lead to severe disability within three to five years.
Bladder Complications: PSP affects the nerve path linking the bladder to the spinal cord, which can cause sudden feelings of urgency and incontinence. If the problem is not caused by a bladder infection, the symptoms often respond to drugs that stimulate the muscle at the neck of the bladder.
Pressure sores: People with PSP who sit or recline in one position for too long may suffer pressure sores, also known as bedsores. Pressure sores can start in less than two hours, and they easily become infected. If left untreated, they can quickly reach to the bone.
Because there is currently no cure for PSP, treatment focuses on managing its signs and symptoms. Good medical and nutritional care can help PSP patients to live a decade or more after disease onset. Patients may want to find a movement disorder specialist. Other care team members may include an occupational therapist, a physiotherapist, a speech pathologist and social worker.
Doctors may treat people with PSP with the following types of medications:
For most people, regardless of having PSP or not, exercise, healthy eating and good sleeping habits are recommended. A healthy lifestyle can lead to an enhanced quality of life for most people. Talk to your doctor before making any lifestyle changes.
Nutrition and fluid intake: People with PSP often have trouble swallowing, which can lead to choking, aspiration and pneumonia. To avoid these complications, PSP patients may eventually need a feeding tube. People with PSP should also make sure that they take in enough fluids to lessen the risk of bladder infections and to include fibre in their diets to prevent constipation.
Avoiding falls: Because PSP can cause loss of balance and falls, people with PSP may want to use a weighted walker or wheelchair. Shoes with built-up heels may be another option to avoid the backward falls characteristic of PSP. Smooth soles may be better than athletic soles, because some PSP patients experience difficulty lifting the foot to initiate a step. In the home, it may be a good idea to install grab bars and remove floor rugs and other objects that are hard to see without looking downward. People with PSP should avoid stairs and other tripping hazards as well.
Eye care: People with PSP may want to use eye drops to help ease problems with dry eyes as well as persistent tearing. Use of glasses with special prisms may also help people with PSP see downward more easily. Special eyelid crutches that attach to eyeglasses may help some people who are having trouble keeping their eyes open.
Oral hygiene: People with PSP may have trouble swallowing, which puts them at increased risk of aspiration and pneumonia. Maintaining good oral hygiene, with regular or increased dentist visits, can cut down on the amount of harmful bacteria in the mouth that could enter the lungs during coughing or choking. Good oral hygiene remains important even if food is being given through a feeding tube.
Mental health: Living with PSP can be frustrating for patients and for their caregivers, and depression and anxiety are common. Ways to manage the stress include talking honestly with your doctor, seeking help from mental health professionals and joining support groups.
Exercise: Though formal physiotherapy has no proven benefit, certain exercises, performed while seated or reclining for safety, may keep the joints limber and provide psychological benefits.
Please note that the information on this website is intended for informational purposes only and should not be used as a substitute for seeking medical advice or treatment from a healthcare professional. You should not use this information to diagnose or treat a medical condition or health problem. Speak to a healthcare professional if you have any questions about your health, medical condition, symptoms or treatment options.
The PSP Association is dedicated to the support of people with Progressive Supranuclear Palsy (PSP) and the related disease Cortico Basal Degeneration (CBD), and those who care for them.
Part of the National Institutes of Health, the National Institute of Neurological Disorders and Stroke seeks fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.
NHS Choices website