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Progressive Supranuclear Palsy (PSP)

Event dates: 15th May 2009 – 24th December 2009

John Pettit is raising money for PSPA

My story

PSP is an older person?s disease and it is unusual for symptoms to appear before the age of fifty. As part of the normal ageing process, neurons in the brain anyway progressively die, but not in the numbers or specific areas seen in PSP and in related neurodegenerative diseases.

Early symptoms such as cramped handwriting, dislike of bright lights, fear of falling, tunnel vision and more nebulous symptoms and feelings are often only recognised in hindsight. This adds to the problems of the clinicians seeking to offer a diagnosis in the early stages of the disease. Because PSP is such an individual disease, with symptoms reflecting the areas in the brain where neurons die, the order of appearance of such early symptoms vary considerably. Indeed, current research is pointing to at least two variants of PSP, each with different early symptoms. Problems with balance and unexpected falls, often backwards, with resulting breakages or damage, often lead to the initial involvement of the medical profession. Vision problems such as the classical upgaze and downgaze restrictions, with related difficulties in opening and closing eyelids, a slow rate of blink, leading to dry eyes and tunnel vision can also occur early in the disease.

As the disease progresses, problems with slurred speech and ability to swallow usually follow and physical movement itself becomes jerkier and less stable. ?Weighted walkers? and wheelchairs may become necessary for mobility; and communication may also become more difficult. At this stage decisions may need to be made on tube feeding to counter the increasing risk of aspirational pneumonia from food ?going down the wrong way? and entering the lungs.

As stated earlier, PSP is a very individual disease and the type and level of symptoms will vary from person to person.

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Charity number: 1037087

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