Progressive supranuclear palsy (PSP) can affect many different aspects of your life and health. Because of this, treatment is given by a team of health and social care professionals who work together.
This type of team is known as a multidisciplinary team (MDT) because it contains experts from many different healthcare disciplines. The team will include:
- a neurologist - a specialist in treating conditions that affect the nervous system
- a physiotherapist - a therapist who helps people to improve their co-ordination and range of movement
- a speech and language therapist
- an occupational therapist - a therapist who helps people to improve the skills and abilities that 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 healthcare professional who specialises in treating people with terminal conditions
- a specialist neurology nurse - who might be your first point of contact with the rest of the team
Medication
While there is no cure for PSP, there are medications that may help to control symptoms. They include:
- levodopa, amantadine and other medications used for Parkinson's disease, which can improve balance and stiffness in around 1 in 3 people
- antidepressants, which are used to help with depression, which can come with PSP, but these may only be effective on a short-term basis
- amitriptylline, which, in low doses, is sometimes used for pain and sleep problems in PSP
Also, people with PSP can be more sensitive to side effects of other medications, and your specialist may suggest stopping them.
Physiotherapist
A physiotherapist can advise you about how to make the most of your remaining mobility by using exercise. Regular exercise can help to strengthen your muscles, improve your posture and prevent stiffening of your joints.
Your physiotherapist will also be able to advise you about any aids that could be of benefit to you, such as a walking frame, or shoes that have been specially designed to reduce your 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 that is caused by small particles of food falling into your lungs). Read more about the complications of PSP.
Speech and language therapist (SLT)
A speech and language therapist (SLT) can help to improve your speech and swallowing problems (dysphagia). They can also teach you a number of techniques to make the most of your speech function by making your voice as clear as possible.
As PSP progresses, you may need some sort of assistive technology to help you to communicate. A range of communication aids are available, and your SLT will be able to advise you about the devices that will be most suitable for you.
Your SLT 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 physical techniques that can be used to make swallowing easier. For example, some people find that moving their chin forward while swallowing helps to prevent any food from entering their airways.
As the symptoms of your dysphagia become more severe, you will require 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 that increase your risk of developing malnutrition or dehydration. 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 is passed down your nose and into your stomach
- percutaneous endoscopic gastrostomy (PEG) tube - a tube that is 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 therapist
An occupational therapist (OT) can provide advice about the best ways of increasing your safety and preventing 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 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 are having problems controlling your eyelids, botulinum toxin (BTA) can be used to help relax the muscles of your eyelids. BTA works by blocking the signals from the brain to the affected muscles. The effects of the injection normally last for up to three months.
If you are experiencing dryness of your eyes due to reduced blinking, eyedrops can be used to lubricate them and reduce irritation.
Glasses that contain specially designed lenses can help some people who are having problems looking down. Wearing wraparound, dark glasses can help those who are vulnerable to bright light.
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
- as a day patient 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 cannot communicate your decisions later because you are too ill.
Issues covered by an advance decision include:
- whether you want to be treated at home, in a hospice or in a hospital once you reach the final stages of PSP
- what 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 are willing to donate any of your organs once you die (the brains of people with PSP are particularly 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 cannot 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.
