Progressive supranuclear palsy - Treatment of progressive supranuclear palsy

There's no cure for progressive supranuclear palsy (PSP) so the aim of treatment is to help control the symptoms.

Multidisciplinary team

As PSP can affect many different areas of your health, treatment is provided by a team of health and social care professionals working together.

This type of team is known as a multidisciplinary team (MDT) because it's made up of experts from many different disciplines. The team will include:

a neurologist - a specialist in conditions that affect the brain and nervous system
a physiotherapist - a therapist who helps ill, injured or disabled people recover movement and function to their full potential
a speech and language therapist
an occupational therapist - a therapist who helps people improve the skills they need for daily activities, such as washing or dressing
a psychologist
a social worker - who will be able to advise you about the support available from social services
an ophthalmologist or orthoptist - specialists in treating eye conditions
a palliative care specialist - a specialist in treating people with terminal illnesses
a specialist neurology nurse - who may act as your point of contact with the rest of the team

Medication

Medication that might be prescribed for PSP includes:

levodopa, amantadine and other medications used to treat Parkinson's disease; these improve balance and stiffness in around 1 in 3 people
antidepressants to help with depression that's often associated with PSP; antidepressants may only be effective on a short-term basis
amitriptylline, which in low doses is sometimes used to treat pain and sleep problems in PSP

People with PSP can be more sensitive to the side effects of other medications, so your specialist may suggest that you stop taking them.

Physiotherapy

A physiotherapist can give you advice about making the most of your remaining mobility using exercise. Regular exercise can help strengthen your muscles, improve your posture and prevent stiffening of your joints.

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

A physiotherapist will also be able to teach you breathing exercises that you can use when you eat to reduce your risk of developing aspiration pneumonia (a chest infection caused by small particles of food falling into your lungs).

Speech and language therapy (SLT)

A speech and language therapist 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.

As PSP progresses, you may need some sort of assistive technology to help you communicate. A range of communication aids are available, and your therapist will be able to advise you about the devices that will be most suitable for you.

Your therapist may be able to teach you exercises that can stimulate the nerves that are used to trigger your swallowing reflex, as well as strengthening the muscles that are used during swallowing.

There are also techniques that can be used to make swallowing easier. For example, some people find that moving their chin forward while swallowing helps prevent food entering their airways.

As your dysphagia becomes more severe, you'll need additional treatment to compensate for your swallowing difficulties (see below).

Diet and severe dysphagia

You may be referred to a dietitian who will advise you about making changes to your diet, such as including food and liquids that are easier to swallow while ensuring that you receive 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 in severe cases of dysphagia, 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 symptoms of dysphagia are at an early stage.

There are two types of feeding tubes:

nasogastric tube - a temporary tube that's passed down your nose and into your stomach
percutaneous endoscopic gastrostomy (PEG) tube - a tube that's surgically implanted directly into your stomach, which passes through a small incision on the surface of your stomach or abdomen

Nasogastric tubes are designed for short-term use and last for 10-28 days before they need to be replaced. PEG tubes are designed for long-term use.

Read more information about how dysphagia is treated.

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.

Treating eye problems

If you're having problems controlling your eyelids, botulinum toxin 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 injection usually last for up to three months.

If you're experiencing dryness of your eyes due to reduced blinking, eyedrops 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 wraparound, dark 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.

Advance decisions

Many people with PSP draw up an advance decision. An advance decision is where you make your treatment preferences known in advance in case you're unable to communicate your decisions later on because you're too ill.

Issues covered by an advance decision include:

whether you want to be treated at home, in a hospice or in a hospital when you reach the final stages of PSP
the type of painkillers you would be willing to take
whether you would 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 (the brains of people with PSP are very useful for research purposes)
if you experience respiratory failure (loss of lung function) due to aspiration pneumonia, whether you would be willing to be resuscitated by artificial means - for example, by having a breathing tube inserted into your neck

You can't request anything illegal in your advance decision, such as assisted suicide.

Your care team will be able to provide you with more information and advice about advance decisions.

Read more about end of life issues and end of life care.