PSP

Treatment of progressive supranuclear palsy

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 whocan help withmovement 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 supportavailable 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,amantadineor other medications used to treat Parkinson's disease .

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

Antidepressants canhelp with the depression that's often associated with PSP, and some may also help with balance, stiffness, pain and sleep problems.

It's important to tell your doctor about the symptoms youre 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 equipmentthat 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).

They can teach you a number of techniques to helpmake your voice as clear as possible and can advise you aboutsuitable communication aidsor devices that you may need as PSP progresses.

Your therapist can also advise you aboutdifferent swallowing techniques and,working together with a dietitian (see below),they may suggest altering the consistency of yourfood 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 will advise you about making changes to your diet, such as including food and liquids that are easier to swallow, while ensuring that 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 symptoms of dysphagia are at an early stage.

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

It works by blocking the signals from the brain to the affected muscles. The effects of the injections usually last for up to three 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 wraparound, dark glasses can help those who are sensitiveto bright light (photophobia).

Palliative care

Palliative care can be offeredat any stageof PSP, alongside other treatments. Itaims to relieve pain and other distressing symptoms while providing psychological, social and spiritual support.

Palliative care can be received:

in a hospice
athome or in a residential home
on a day patient basisin a hospice
in a hospital

This can be useful in case youre unable to communicate your decisions later on because youre too ill, although its voluntary and you dont have to do it if you dont want to.

Issues that you may want to cover might include:

if you want to be treated at home, in a hospice or in a hospital whenyou reach the final stages of PSP
the type of painkillers you would be willing to take
if you would be willing to use a feeding tube if you were no longer able to swallow food and liquid
if you're willing to donate any of your organs after you die
if you'd be willing to be resuscitated by artificial meansif 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: