People with progressive supranuclear palsy (PSP) develop a range of difficulties with balance, movement, vision, speech and swallowing.

The condition tends to develop gradually, which means it can be mistaken for another, more common, condition at first. 

The symptoms typically become more severe over several years, although the speed at which they worsen varies.

Some of the main symptoms of PSP are outlined below. Most people with the condition won't experience all of these.

Early symptoms

The initial symptoms of PSP can include:

• sudden loss of balance when walking that usually results in repeated falls, often backwards
• muscle stiffness, particularly in the neck
• extreme tiredness
• changes in personality, such as irritability, apathy (lack of interest) and mood swings
• changes in behaviour, such as recklessness and poor judgement
• a dislike of bright lights (photophobia)
• difficulty controlling the eye muscles (particularly problems with looking up and down)
• blurred or double vision

Some people have early symptoms that are very similar to those of Parkinson's disease, such as tremors (involuntary shaking of particular parts of the body) and slow movement.

Mid-stage symptoms

Over time, the initial symptoms of PSP will become more severe.

Worsening balance and mobility problems may mean that walking becomes impossible and a wheelchair is needed.

Controlling the eye muscles will become more difficult, increasing the risk of falls and making everyday tasks, such as reading and eating, more problematic.

New symptoms can also develop at this stage, such as:

• slow, quiet or slurred speech
• problems swallowing (dysphagia)
• reduced blinking reflex, which can cause the eyes to dry out and become irritated
• involuntary closing of the eyes (blepharospasm), which can last from several seconds to hours
• disturbed sleep
• slowness of thought and some memory problems
• neck or back pain, joint pain and headaches

Advanced stages

As PSP progresses to an advanced stage, people with the condition normally begin to experience increasing difficulties controlling the muscles of their mouth, throat and tongue.

Speech may become increasingly slow and slurred, making it harder to understand. 

There may also be some problems with thinking, concentration and memory (dementia), although these are generally mild and the person will normally retain an awareness of themselves.

The loss of control of the throat muscles can lead to severe swallowing problems.

This may mean a feeding tube is required at some point to prevent choking or chest infections caused by fluid or small food particles passing into the lungs.

Many people with PSP also develop problems with their bowels and bladder functions. 

Constipation and difficulty passing urine are common, as is the need to pass urine several times during the night.

Some people may lose control over their bladder or bowel movements (incontinence).

It can be difficult to diagnose progressive supranuclear palsy (PSP), as there's no single test for it and the condition can have similar symptoms to a number of others.

There are also many possible symptoms of PSP and several different sub-types that vary slightly, making it hard to make a definitive diagnosis in the early stages of the condition.

A diagnosis of PSP will be based on the pattern of your symptoms and by ruling out conditions that can cause similar symptoms, such as Parkinson's disease or a stroke.

Your doctor will need to carry out assessments of your symptoms, plus other tests and scans.

The diagnosis must be made or confirmed by a consultant with expertise in PSP.

This will usually be a neurologist (a specialist in conditions affecting the brain and nerves).

Brain scans

If you have symptoms of PSP that suggest there's something wrong with your brain, it's likely you'll be referred for a brain scan.

Types of scan that you may have include:

• an MRI scan (where a strong magnetic field and radio waves are used to produce detailed images of the inside of the brain)
• a PET scan (this detects the radiation given off by a substance injected beforehand)
• a DaTscan (where you're given an injection containing a small amount of a radioactive material and pictures of your brain are taken with a gamma camera)

These scans can be useful in ruling out other possible conditions, such as brain tumours or strokes.

MRI scans can also detect abnormal changes to the brain that are consistent with a diagnosis of PSP, such as shrinkage of certain areas.

Scans that show the build-up of the tau protein in the brain that's associated with PSP are currently under development.

Ruling out Parkinson's disease

You may be prescribed a short course of a medicine called levodopa to determine whether your symptoms are caused by PSP or Parkinson's disease.

People with Parkinson's disease usually experience a significant improvement in their symptoms after taking levodopa, whereas the medicine only has a limited beneficial effect for some people with PSP.

Neuropsychological testing

It's also likely you'll be referred to a neurologist, and possibly also a psychologist for neuropsychological testing.

This involves having a series of tests that are designed to evaluate the full extent of your symptoms and their impact on your mental abilities.

The tests will look at abilities such as:

• memory
• concentration
• understanding language
• the processing of visual information, such as words and pictures

Most people with PSP have a distinct pattern in terms of their mental abilities, including:

• poor concentration
• a low attention span
• problems with spoken language and processing visual information

Their memory of previously learned facts is not usually significantly affected.

Coping with a diagnosis

Being told that you have PSP can be devastating and difficult to take in.

You may feel numb, overwhelmed, angry, distressed, scared or in denial.

Some people are relieved that a cause for their symptoms has finally been found.

There's no right or wrong way to feel. Everybody is different and copes in their own way.

Support from your family and care team can help you come to terms with the diagnosis.

The PSP Association can give you information and practical advice about living with PSP, as well as providing support to help you cope with the emotional impact of the condition.

You can get in touch with the PSP Association by:

• calling their helpline on 0300 0110 122
• emailing helpline@pspassociation.org.uk

There's currently no cure for progressive supranuclear palsy (PSP) and no treatment to slow it down, but there are lots of things that can be done to help manage the symptoms.

As PSP can affect many different areas of your health, you'll be cared for by a team of health and social care professionals working together. This is known as a multidisciplinary team (MDT).

Members of your MDT may include:

• a neurologist (a specialist in conditions that affect the brain and nerves)
• a physiotherapist (who can help with movement and balance difficulties)
• a speech and language therapist (who can help with speech or swallowing problems)
• an occupational therapist (who can help you improve the skills you need for daily activities, such as washing or dressing)
• a social worker (who can advise you about the support available from social services)
• an ophthalmologist or orthoptist (specialists in treating eye conditions)
• a specialist neurology nurse (who may act as your point of contact with the rest of the team)

Some of the main treatments that may be recommended are outlined below.

Medication

There are currently no medications that treat PSP specifically, but some people in the early stages of the condition may benefit from taking levodopa, amantadine or other medications used to treat Parkinson's disease.

These medications can improve balance and stiffness for some people with PSP, although the effect is often limited and only lasts for up to a few years.

Antidepressants can help with the depression that's often associated with PSP.

Some may also help with balance, stiffness, pain and sleep problems. 

It's important to tell your doctor about the symptoms you're experiencing so they can consider which of these treatments is best for you.

Physiotherapy

A physiotherapist can give you advice about making the most of your remaining mobility using exercise, while making sure you don't overexert yourself.

Regular exercise may help strengthen your muscles, improve your posture and prevent stiffening of your joints.

Your physiotherapist can advise about equipment that could benefit you, such as a walking frame or specially designed shoes to reduce the risk of slipping and falling.

They can teach you breathing exercises to use when you eat to reduce your risk of developing aspiration pneumonia (a chest infection caused by food particles falling into your lungs).

Read more about physiotherapy.

Speech and language therapy

A speech and language therapist (SLT) can help you improve your speech and swallowing problems (dysphagia).

They can teach you a number of techniques to help make your voice as clear as possible, and can advise you about suitable communication aids or devices you may need as the condition progresses.

Your therapist can also advise you about different swallowing techniques and, working together with a dietitian, they may suggest altering the consistency of your food to make swallowing easier.

As your swallowing problems become more severe, you'll need additional treatment to compensate for your swallowing difficulties.

Diet and severe swallowing problems

You may be referred to a dietitian, who'll advise you about making changes to your diet, such as including food and liquids that are easier to swallow, while making sure you have a healthy, balanced diet.

For example, mashed potatoes are a good source of carbohydrates, while scrambled eggs and cheese are high in protein and calcium.

Feeding tubes may be recommended for severe swallowing problems, where the risk of malnutrition and dehydration is increased.

You should discuss the pros and cons of feeding tubes with your family and care team, preferably when your dysphagia symptoms are at an early stage.

The main type of feeding tube used is called a percutaneous endoscopic gastrostomy (PEG) tube. This tube is placed into your stomach through your tummy during an operation.

Read more about treating dysphagia.

Occupational therapy

An occupational therapist (OT) can advise you about how you can increase your safety and prevent trips and falls during your day-to-day activities.

For example, many people with PSP benefit from having bars placed along the sides of their bath to make it easier for them to get in and out.

The OT will also be able to spot potential hazards in your home that could lead to a fall, such as poor lighting, badly secured rugs, and crowded walkways and corridors.

Read more about occupational therapy.

Treating eye problems

If you're having problems controlling your eyelids, injections of botulinum toxin (such as Botox) can be used to help relax the muscles of your eyelids.

It works by blocking the signals from the brain to the affected muscles. The effects of the injections usually last for up to 3 months.

If you're experiencing dry eyes because of reduced blinking, eyedrops and artificial tears can be used to lubricate them and reduce irritation.

Glasses with specially designed lenses can help some people with PSP who have difficulty looking down.

Wearing dark wraparound glasses can help those who are sensitive to bright light (photophobia).

Palliative care

Palliative care can be offered at any stage of PSP, alongside other treatments.

It aims to relieve pain and other distressing symptoms while providing psychological, social and spiritual support.

Palliative care can be received:

• in a hospice
• at home or in a residential home
• on a day patient basis in a hospice
• in a hospital

Read more about accessing palliative care.

Advanced care planning

Many people with PSP consider making plans for the future that outline their wishes (both medical and other decisions), and make them known to both their family and the health professionals involved in their care.

This can be useful in case you're unable to communicate your decisions later on because you're too ill, although it's voluntary and you don't have to do it if you don't want to.

Issues that you may want to cover might include:

• whether you want to be treated at home or in a hospice or hospital when you reach the final stages of PSP
• the type of painkillers you'd be willing to take
• whether you'd be willing to use a feeding tube if you were no longer able to swallow food and liquid 
• whether you're willing to donate any of your organs after you die
• whether you'd be willing to be resuscitated by artificial means if you experienced respiratory failure (loss of lung function)

If you decide to discuss these issues, they can be written down in a number of ways:

• advance decision to refuse treatment
• advance statement
• emergency healthcare plan
• lasting power of attorney

Your care team can provide you with more information and advice about these decisions and how best to record them.

Read more about end of life care.

Care and support

If someone you know develops PSP, you may need information and advice about caring for them.

The Care and support guide has a wide range of useful information about all aspects of caring for others, and advice for carers themselves.

You can also contact the PSP Association for help and advice:

• email helpline@pspassociation.org.uk
• call the helpline on 0300 0110 122

The Parkinson's nurse at your local hospital may be able to provide you with useful information and support.

Research into PSP

There have been several trials of different medications that aim to help symptoms of PSP or slow its progression.

Further research into treatments, scans and causes of the condition is ongoing.

If you wish to get involved in PSP research, you can search for clinical trials for PSP or ask your care team about any ongoing or planned trials you may be suitable for.