Frequently Asked Questions about Progressive Supranuclear Palsy (PSP)

At present, the exact cause of PSP is unknown. The causes and risk factors are still unclear; PSP is not the result of anything the person has done or failed to do.

No. Although there are some genetic factors that may slightly increase the risk, PSP is not a hereditary disease. The risk for children is therefore similar to that of the general population.

PSP does not cause paralysis of the legs. The term "paralysis" in the name refers to difficulties in moving the eyes up and down. Over time, however, problems with balance and falls tend to become more frequent, and in many cases, the use of a wheelchair is recommended to prevent fractures and injuries.

Dementia is usually neither the first nor the main symptom of PSP.

However, alterations in thinking and behaviour are common, such as:

• Difficulties with planning.
• Apathy or lack of motivation.
• Irritability or disinhibition.
• Difficulties with speaking or expressing oneself.

These changes can affect independence and communication.

While PSP may occasionally be mistaken for frontotemporal dementia, the two are different conditions.

There are no drugs specifically approved to cure PSP. Drugs commonly used for Parkinson’s disease, such as levodopa or amantadine, are sometimes used. Around 4 out of 10 people may notice some improvement, although it is often limited or temporary, and only a small proportion experience long-term benefits.

No. Unlike Parkinson's disease, deep brain stimulation surgery is not indicated for PSP, as the risks outweigh any potential benefits.

Generally speaking, yes. Since PSP already affects vision and balance, leaving cataracts untreated can make the situation even worse. If there are no contraindications, surgery can be beneficial.

If the disease is not at an advanced stage, the necessary surgeries should be performed (e.g., for joint problems or cancer). It is important to remember, however, that recovery after surgery may be more complex, so the risks and benefits should always be carefully assessed on an individual basis.

Yes. Infections can lead to significant deterioration, which is sometimes irreversible.

Therefore, it is recommended to follow the vaccination schedule, especially for the flu and COVID-19 vaccines.

Although it is not possible to stop the progression of PSP, there are many measures that can help, such as:

• Staying physically and mentally active, avoiding excessive exertion and the risk of falls.
• Undertaking physiotherapy, speech therapy, and occupational therapy
• Receiving psychological support.
• Planning future care and decisions together with the neurology team, nursing, staff and social workers.
• These measures can help maintain quality of life and provide a greater sense of support throughout the course of the disease.