Progressive supranuclear palsy (PSP)

Progressive supranuclear palsy (PSP) is a neurological condition. It’s caused by the loss of nerve cells in parts of the brain. This can lead to problems with balance, movement, vision, speech and swallowing.

Symptoms of PSP

PSP usually develops gradually and can sometimes be mistaken for other conditions. The symptoms tend to get worse over many years.

Early symptoms

The first symptoms of PSP you might experience include:

  • repeated falls (often backwards) caused by a sudden loss of balance when walking
  • muscle stiffness, especially in the neck
  • fatigue
  • changes in personality like mood swings and irritability
  • changes in behaviour like recklessness and poor judgement
  • dislike of bright lights (photophobia)
  • eye problems like blurred or double vision, problems looking up and down, or involuntary eye closure
  • tremors (involuntary shaking of parts of the body)
  • slow movement
Mid term symptoms

The symptoms of PSP, like balance and mobility problems, are likely to progressively get worse.

The new symptoms that might develop at this stage include:

  • slurred, slow or quiet speech
  • problems with swallowing (dysphagia)
  • involuntary blinking or twitching of the eyelids
  • reduced blinking reflex which causes the eyes to become dry and irritated
  • problems sleeping
  • memory problems
  • slowness of thought
  • back, neck and joint pain
Long term symptoms

As the symptoms of PSP get worse, your speech might become slower and more slurred.

Mobility problems might get worse and you might need a wheelchair to help you get around.

At the advanced stage, people with PSP are likely to have difficulty controlling the muscles of their mouth, tongue and throat.

Swallowing problems can become worse because of the loss of control of the throat muscles.

PSP can cause problems like constipation and difficulty passing urine (peeing). It can also cause frequent peeing during the night. Sometimes it can cause you to lose control of your bowel and bladder movements (incontinence).

Causes of PSP

It’s believed that a protein called tau, which builds up in certain areas of the brain, forms into clumps. This causes damage to the nerve cells. Over time this build up can lead to someone experiencing the symptoms of PSP.

The location of the clumps and the amount of tau varies between people with PSP. This also affects the type and severity of symptoms.

PSP tends not to run in families and is not believed to be hereditary in most cases.

Diagnosing PSP

There’s no single test for PSP. The many different symptoms can make it difficult to diagnose.

A specialist doctor will ask you about your symptoms to rule out other similar conditions, like Parkinson’s disease.

You might have other tests and scans.

Brain scans

You might have:

  • an MRI scan
  • a dopamine SPECT scan which involves an injection of radioactive material to allow a gamma camera to create picture of the brain

The scans will also help to rule out other conditions that can cause similar symptoms.

Neuropsychological testing

You might have neuropsychological testing to evaluate your symptoms.

These tests will assess your:

  • concentration
  • memory
  • communication
  • ability to process visual information like pictures and words

Treating PSP

Although there’s no cure for PSP, there are lots of ways you can manage your symptoms.

It’s likely you’ll have a multi disciplinary team (MDT) who’ll work together to help manage your symptoms.

Visit the PSP Association for information and support about living with PSP. They have a dedicated PSP Care Navigator who can help to support you.

Medication

There’s no specific medication that can treat PSP. Taking medication used to treat Parkinson’s disease can help some people with PSP. This can help to improve stiffness, movement and balance for some people. The effect, however, is sometimes limited and might only last a few years.

Some antidepressants can help improve problems with pain, stiffness and sleep problems. You might be offered antidepressants to help with depression.

You should discuss your symptoms with your doctor to make sure you’re prescribed the best treatment.

Physiotherapy

A physiotherapist can give you regular exercises to do. This can help strengthen your muscles and prevent your joints from stiffening.

They’ll also consider if there’s any equipment that would help you. You might try a walking frame or shoes that can help reduce your risk of falls.

You can try breathing exercises to reduce the chance of developing aspiration pneumonia when you eat. Aspiration pneumonia is a chest infection caused by inhaling particles of food into your lungs.

Speech and language therapy

A speech and language therapist will try to help with your problems with speech and swallowing (dysphagia).

They might suggest changing the consistency of your food to make it easier to swallow.

They might be able to give you techniques you can use to make your voice clearer. They’ll suggest communication aids or devices if they think they might help you.

Nutritional support

A dietitian will talk to you about how to eat a healthy balanced diet. They can help you include more food and liquids that are easy to swallow.

If there’s a risk of malnutrition and dehydration, you might be offered a feeding tube.

Occupational therapy

An occupational therapist will assess your home for hazards that could cause you to fall and injure yourself. There might be things that can be fitted around your home to make it safer for you like handles around the bath.

Read more about occupational therapy

Eye problems

If you have problems controlling your eyelids, botulinum toxin (like Botox) can help relax your eyelid muscles. It usually lasts up to 3 months.

If you have dry eyes because of reduced blinking, eyedrops can be used to reduce irritation.

You might want to try wearing dark wraparound glasses if you’re sensitive to light (photophobia). There are also glasses you can wear to help you if you have problems looking down (prisms).

Palliative care

You can choose to have palliative care at any stage of PSP in addition to other treatments.

Palliative care aims to relieve pain and other symptoms along with psychological, spiritual and social support.

You might receive palliative care:

  • at home
  • in a hospice or care home
  • as an outpatient in a hospital
  • in a hospital

Read more about palliative care

Advance care planning

You might want to consider making plans for the future to help your family and health professionals plan your medical care.

This will be useful if you’re unable to communicate later on because you’re too ill.

You don’t have to make these plans if you don’t want to.


Last updated:
23 April 2024

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