2009 Charity

Nominated Charity for 2009

The Band’s charity for 2009 was Progressive Supranuclear Palsy (PSP)

The PSP Association is the only national organisation in the UK dedicated to the support of people with Progressive Supranuclear Palsy (PSP) and the related disease Cortico Basal Degeneration (CBD), and those who care for them.
Progressive Supranuclear Palsy (PSP) is a degenerative brain disease which affects eye movement, balance, mobility, speech and swallowing.

* P – Progressive – the disease gets steadily worse.
* S – Supranuclear – the area affected is above (‘supra’) the nuclei in the brain.
* P – Palsy – paralysis

PSP and related diseases are often referred to as neurodegenerative diseases.

Progressive Supranuclear Palsy (PSP) involves the progressive death of neurons (nerve endings) in the brain, mainly in the basal ganglia and brainstem, just above the nuclei (hence ‘Supranuclear’ being a key part of its name).

224x199-Brain 1 The area affected in PSP controls balance, movement, vision (particularly upgaze and downgaze) speech and the ability to swallow, hence the main symptoms, some of which may not appear or progress at all or until later in the disease. Other symptoms, including behavioural changes and weight-loss, may appear.

Over time PSP can rob a person of the ability to walk, talk, feed themselves or communicate effectively with the world around them, yet they usually remain mentally alert.

PSP affects people in their 40s, 50s, 60s and above, the average age of onset being 62. Like other neurodegenerative diseases, PSP gets worse over time. The average life expectancy of a patient is some seven years, but it is a very individual disease and the rate of progression of symptoms varies considerably from person to person.

Research has confirmed an incidence for PSP across the UK of 5.3 per 100,000 of population and a prevalence of 6.4, meaning that there are at least some 4,000 living patients across the country, though leading neurologists consider this figure to be seriously low. PSP is a difficult disease to diagnose, particularly in its early stages, when it often mimics Parkinson’s disease and other related neurodegenerative diseases. Taking this into account, neurologists estimate the true figure across the UK to be up to 15 per 100,000, (equivalent to 10,000 living patients).

This means PSP is at least as common as Motor Neurone Disease.

The exact cause of PSP is unknown, however, there is now known to be a complex genetic component involved and the disease itself appears to be triggered environmentally and selectively, perhaps by any one of a variety of neurotoxins, or injury to the head.