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)
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 treatments are best for you.
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.
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 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.
You may be referred to a dietitian, who'll advise you on how to have a healthy, balanced diet when making any suggested changes to the consistency or texture of what you eat.
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 problems with swallowing 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 swallowing problems (dysphagia).
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.
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 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 or care home
- at home
- on a day patient basis in a hospice
- in a hospital
Many people with PSP consider making plans for the future that outline their wishes (both medical and other decisions), and make these 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 want to decide about these issues, they can be written down in a number of ways:
- advance decision to refuse treatment
- advance statement about your wishes
- 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.
If someone you know develops PSP, you may need information and advice about caring for them.
The social 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 [email protected]
- call the helpline on 0300 011 0122
A Parkinson's nurse at your local hospital may be able to provide you with useful information and support.
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 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.
