What is PSP?

PSP is a rare and progressive brain disorder that can have overlapping symptoms at diagnosis with those of Parkinson’s, but the conditions are different and we recognise that this can cause frustration around lack of recognition and validation.

PSP, previously known as, and sometimes still called ‘Steele Richardson syndrome’ is identified as an Atypical Parkinson’s condition. Many people prefer to be identified as ‘living with PSP’, even though many members of the general public are not aware of this diagnosis.

There are currently no treatments to cure or slow progression, however therapies and strategies are available to help people with PSP and their families and carers to make the most of living with the condition.

How is PSP different from Parkinson’s?

PSP is often misdiagnosed as Parkinson’s, especially early in the disorder. The two disorders share many symptoms; however, PSP progresses more rapidly than Parkinson’s.

There are several key differences between PSP and Parkinson’s, mainly:

• People with PSP tend to lean backwards and extend their neck. The unexplained falls that accompany PSP usually arise from falling backward. This is termed “axial rigidity.” People with Parkinson’s tend to bend forward rather than backward.
• Problems with speech and swallowing are much more common and severe in PSP than in Parkinson’s and usually show up earlier.
• People with PSP develop unique eye movement problems with looking up and down.
• Tremor is rare in PSP but very common in individuals with Parkinson’s.
• Individuals with Parkinson’s disease often show great benefit from levodopa therapy, while people with PSP have minimal or no response.
• A signature of PSP is the accumulation in affected brain cells of a protein known as tau, whereas in Parkinson’s, a different protein called alpha-synuclein accumulates in diseased brain cells.

What are the symptoms of PSP?

PSP affects different people in different ways. It has a wide range of symptoms. These get worse over time and can start to have a significant impact after 5–6 years.

Early symptoms of PSP may include:

• problems with walking (or ‘gait’). These may include stiffness, awkwardness, or problems with balance and unexplained falls, particularly backwards
• a feeling of dizziness
• slow movements
• facial stiffness
• problems with eyesight, which may be described as tunnel vision, blurring, double-vision, dislike of bright lights, and/or difficulty focusing
• vertical gaze palsy (difficulty looking up and down)
• problems with thinking
• changes in personality, such as loss of interest in activities that were previously enjoyed, irritability, depression, and/or heightened emotional responses
• slurring of speech
• clumsiness
• mild shaking of hands
• small handwriting.

Later symptoms of PSP may include:

• worsening of movement problems making walking very difficult and resulting in some people requiring assistance with movement
• recurrent falls that can lead to bruises and fractures
• eye problems that can include involuntary closure of eyelids
• difficulty looking up, down or to the side and loss of ability to focus
• difficulties with swallowing that can lead to weight loss and bouts of choking
• communication difficulties
• increased difficulty with thinking.

There are a range of treatments and therapies that can help to manage symptoms and achieve the best possible level of independence and quality of life. 

Where can I go for support?

People may experience a range of feelings after being diagnosed with PSP. Most people experience a feeling of grief, which may include fear, sadness, denial, anger, or concern for the future. Some people may experience a feeling of relief at having a name for the difficulties they have been experiencing after searching so long for answers.

It’s important to have a safe space in which to work through these feelings of grief and be aware that those around you will be experiencing the same range of emotions. Speaking to a counsellor can help you to come to terms with your feelings and make meaning of the situation. Getting information and support can help you to adjust to the diagnosis and begin to make changes that will help with the daily management of the condition.

Please remember, you’re not alone, and help is available. Whether you are someone who lives with, or cares for someone who lives with PSP, support is available. There are a range of resources and supports that are available and Fight Parkinson’s can provide information to help navigate this:

• information and emotional support – either over the phone or in person
• assistance understanding available options regarding therapies, resources to maintain independence, and financial support and assistance
• support groups where you can share your experiences and learn from others
• details about where to access help with personal care, such as bathing, dressing, eating, home-delivered meals and other food services, home help for assistance with housework, laundry, and shopping, and help for carers, including information, counselling, advice, and respite to help them take a break from caring.

For further information about services that can help, contact Fight Parkinson’s.