Every once in awhile I check the PSP Association’s website at pspeur.org as they often post great materials for the PSP community. They are based in the UK. Last week, they posted this announcement:
“The PSP Association have released for the first time film footage featuring the late Nigel Dempster talking about his life with Progressive Supranuclar Palsy (PSP). Nigel made the DVD to raise awareness in the hope that it would help people affected by PSP, their families and carers receive better access to care and support, and also highlight the need for more research in to causes, treatments and ultimately a cure.”
Nigel Dempster died in 2007 at age 65 with PSP. He was a well-known newspaper columnist.
You can find the 8-minute video here:
http://www.pspeur.org/news_and_events/video.html
Over several introductory slides, PSP is described as follows:
“Progressive Supranuclear Palsy is a neuro degenerative disease involving the death of neurons (or nerve endings) mainly in the brain stem and basal ganglia. This is the area, above the nuclei (hence supranuclear), which controls balance, movement, vision (particularly upgaze and downgaze), speech and ability to swallow.”
“Average life expectancy is seven years from onset, for the last two of which the patient is often wheelchair or bedbound, tube fed, on ‘around the clock’ care and unable to communicate with the world around although their intellect remains largely intact.”
“Recent research confirms a prevalence of at least 5 per 100,000 of the population, though leading neurologists estimate there could be up to 10,000 people living with PSP in the UK, many misdiagnosed (often as Parkinson’s Disease, which it can mimic in its early stages) and many, particularly amongst the elderly, left undiagnosed.”
“There is today no effective treatment and no cure for this disease, though there is an increasing amount of ongoing research into its cause, treatment and cure, mainly sponsored by the PSP Association.”
Then the story of Nigel Dempster is told. He is shown at the age of 62, with a PSP diagnosis. He had to quit his job at age 61 due to PSP symptoms (backward falls). Some clips of Dempster as a younger man were shown.
It’s quite a powerful video. Dempster’s story is told openly.
Robin