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So, what is Progressive Supranuclear Palsy (PSP)?



PROGRESSIVE Supranuclear Palsy (PSP) is a rare neurodegenerative condition which, according to the Progressive Supranuclear Palsy Association (PSPA), has a prevalence of 6.4 per 100,000. This constitutes about 5 per cent of parkinsonian patients seen in movement disorder clinics. The average age of onset is 62, although the youngest current sufferer of PSP in the UK was diagnosed at the age of 38.

PSP was first diagnosed by John Steele, J. Clifford Richardson and Jerzy Olszewki in 1963 and was initially known as Steele-Richardson-Olszewki Syndrome.

PSP is difficult to diagnose at first and is often misdiagnosed as Parkinson’s Disease. However, as PSP progresses, different clinical features become apparent i.e. frequent unexpected backward falls, axial rigidity, bradykinesia, restricted eye movement (unable to look up or down), reduced blink, double vision, light sensitivity, slurring of speech, soft voice, dysphagia, excessive saliva, choking, irritability, apathy and depression to name just a few.

PSP has no treatment or cure. The multidisciplinary team need to work together to manage the symptoms and provide advanced care planning. The PSPA publishes a range of free helpful and informative literature specifically aimed at GPs and primary healthcare teams, health and social care professionals and occupational therapists (OTs). They also offer amazing support to sufferers and their families. Please contact them for further information.  There are PSP Associations worldwide in Australia, Canada, France, Germany, Ireland, Switzerland and USA.

What might help? Drugs that are commonly used for Parkinson’s: Sinemet, Madopar, Rasagline and Rostigotine patches. To reduce excessive saliva production: carbocisteine oral solution and hyoscine patches. Baclofen for muxcle spasms.

Other suggestions, listed here, include protective headwear to prevent injury (when you fall backwards you can’t stop yourself). A suction machine (essential in reducing risk of choking and aspiration pneumonia). Daily mouth care and monitoring (due to risk of oral thrush). Pineapple juice to help reduce saliva production. A voice amplifier to use once the voice becomes soft. An IPad with a speak App. Referral for Lee Silverman Voice Treatment therapy (LSVT) – a 16-hour exercise therapy carried out over a period of 4 weeks (to search for a therapist near you see global link at end). Wrap around sunglasses or dark over glasses with dark side panels to block out light. Eye mask to wear overnight. Prism glasses (available free from PSPA) to aid at mealtimes. A PEG feed. Daily weight. A catheter. PSPA and social media support for sufferers and families.

Annabel Yoxall’s father in law has PSP. She is hoping to spread awareness of the condition amongst healthcare professionals to assist them in their care of PSP sufferers.

PSP sufferers telling their stories


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