- PSP is a progressive neurological condition.
- There is currently no cure or treatment to slow the progress of the condition.
- The mean age of onset of symptoms is 62 years, though people have been diagnosed as young as 40.
- Lifespan after the onset of first symptoms varies widely but averages between five and seven years. There can be a delay in diagnosis – it can often first be diagnosed as Parkinson’s Disease, frontal lobe dementia or stroke.
- Symptoms are varied and complex – include falls (often backwards), difficulties with speech and swallowing, slowing or limiting of vision, continence, rigidity and mobility. The intellect generally, but not always, remains intact although there can be other cognitive impairments including considerable apathy and lack of engagement and some people experience behavioural changes.
Cortico Basal Degeneration – similar to PSP except:
- Numbness, jerking fingers, loss of use of one hand.
- Asymmetric; progressively affecting arm and leg.
- Alien limb.
- Less common disturbance of eye movement.
- Increased frontal lobe deficit.
- Even rarer.
Published research (2001) funded by the PSP Association suggests 6.4 cases of PSP per 100,000 in the UK. So approximately 300 or so people in Yorkshire and Humberside. However, misdiagnosis currently seriously affects the number of people identified as living with PSP.
- There are an estimated 10,000 people living with PSP in the UK.
- It is under recorded on death certificates.
- Only known risk factor is age.
- Slightly more common in men.
Access to appropriate care
As with any complex neurological condition, a range of health and social care professionals will need to be involved in different stages of PSP. In 2012 the PSP Association launched a care pathway for people living with PSP and CBD. Find out more on the PSP Association website.