Progressive supranuclear palsy (PSP) is a rare and progressive condition in which increasing numbers of brain cells become damaged over time. This is known as neurodegeneration.
The causes of PSP are unknown, although current research suggests that it is caused by a combination of environmental and genetic factors. Most cases of PSP first develop in people who are 60-65 years of age, although the condition has been diagnosed in people as young as 40 years of age.
What are the symptoms of PSP?
As PSP is a progressive condition, the initial symptoms will become more severe over time, and new symptoms can develop. The rate at which the symptoms of PSP progress can vary widely between individuals but early symptoms can include:
- progressive problems with balance and mobility
- changes in behaviour, such as irritability or apathy (lack of interest)
- an inability to control eye and eyelid movement, including focusing on specific objects or looking down at something (dystonia)
Later symptoms can include:
- increasing difficulties with speaking and swallowing (dysphagia)
- changes in thought, such as becoming increasingly forgetful or having difficulty concentrating
Although PSP itself is not life-threatening, it can lead to serious complications. One of the most common complications of PSP is difficulties swallowing (dysphagia) leading to choking or inhaling food or liquid into the airway (aspiration). Aspiration can develop into pneumonia which is the most common cause of death for people with PSP.
Problems with mobility can also make someone with PSP vulnerable to falls which can lead to head injuries and fractures in severe cases.
With good care and assistance it is possible that someone with PSP will be able to live for over 10 years after the symptoms start.
How common is PSP?
It used to be thought that PSP was a very rare condition. But research has found that while PSP is rare, it is a much more widespread than previously thought. For example, a recent study estimated that five new cases of PSP are diagnosed each year in every 100,000 people who are over 50 years of age.
However, this figure may underestimate the true number of cases of PSP because many cases may have been misdiagnosed, often as conditions such as Alzheimer’s disease or Parkinson’s disease, which share some of the symptoms of PSP. Read more information about how PSP is diagnosed.
The UK’s leading charity for PSP - the PSP Association - says that the true figure for those with PSP may be much higher, and that more than 10,000 people in the UK are currently living with the condition.
What treatment is available for PSP?
Although research into PSP is still ongoing, there is currently no cure for the condition. Treatment focuses on relieving symptoms while trying to ensure that someone with PSP has the best possible quality of life.
Treatment for PSP is provided by a team of health and social care professionals working together, as a person may be affected in many different ways. Specific symptoms of PSP might be treated with:
- medication - to improve balance, stiffness and other symptoms
- botulinum injections or special glasses - to help with eye problems
- feeding tubes - to help overcome dysphagia and avoid malnutrition or dehydration
