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 website 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.