The PSP Association Overview on the symptoms, care and support of patients with PSP Presented by: Gina Rutterford Development Officer East Anglia 1
PSP Play Station Portable?
Other names Steele Richardson Olszewski Syndrome Parkinson s Plus Atypical Parkinsonism
Popular Misconceptions PSP is not a variant of PD. PSP is not the end stages of PD. PSP is not a sub-type of PD. PSP is a distinctly different disease from PD but the early symptoms are similar to those experienced in patients with PD.
Progressive Supranuclear Palsy What is it? Degenerative progressive neurological condition 6 per 100,000 of population (as MND) Cause Unknown Affects male/females equally Age of onset 60 plus, rarely under 40 No effective treatment No cure Life expectancy 5-8 years
PSP Pathology
Common Symptoms Rigidity Slow movement Loss of balance-with early falls Difficulty with speech and swallow Slowness of eye movements-downward gaze Possible personality changes/behavioural problems/apathy
Clinical features in 187 cases of PSP 100 90 80 70 60 50 40 30 20 10 0 falls eye movement speech swallow apathy tremor spasms
PSP Differential diagnosis No current definitive diagnostic tool Non levodopa responsive No presenting tremor Rarely affects people under 40 Falls are often backwards Steady deterioration Restricted eye movement Neurofibrilliary tangles not Lewy Bodies
Postural Instability Falls-backwards, often without warning Shuffling gait Stiff arched neck, axial rigidity Eye problems increase difficulties, cannot look down Tiredness, light-headed Change of direction-loss of balance Sitting en bloc / Rocket sign
Reduced swallow PSP Swallow Overfill mouth Weak cough reflex-choking Excessive drooling
Visual Impairment Slow up/down gaze Mona Lisa stare Dolls eye movement Blurred, tunnel vision Slow saccades Difficulty with eye opening Sore, gritty inflamed eyes Photophobia
PSP Cognitive changes Vague changes to personality Intellect largely intact Short term memory loss Impaired judgement Irritability, aggression, apathy Emotional lability Depression
PSP Pain Rigidity of muscles (particularly neck) Cramp in muscles Possible contractures
Bladder/bowel incontinence Bedwetting Difficulty initiating flow UTI s Constipation PSP Continence Issues
PSP Palliative care Progressive condition deterioration is individual Immobile Unable to communicate Unable to eat/drink Restricted vision Incontinent Intellect intact
PSP - A patients view I have 2 strong legs that I can move but when I walk I fall; I have a strong voice but when I talk no-one understands; I have good vision but I cannot see I cannot read; My throat is healthy but I cannot eat without choking.
PSP Registered Charity:- To promote research worldwide into the cause, effective treatment and cure To provide information and support to afflicted families across Europe To engender awareness
PSP Our Achievements!
PSP Achievements Sponsored Sarah Koe Research Centre since 2002 at National Hospital, Queen s Square PSP Brain Tissue Bank Funding almost 2m of research worldwide Held 6 International Medical Workshops devoted to PSP
PSP Achievements Cont d Established 24 hour telephone counselling service Set up 16 different Local Support Groups across UK Establishing 6 Development Officers Provides 3 Specialist Nurses
PSP Nurse Specialists Helpline Support Groups Talks/Study sessions Clinics London Cambridge Newcastle Newport Manchester
What do they get? PSP Subscribers
PSP Subscribers Telephone Helpline Service Local Support Groups PSP Matters Magazine every 4 months Web Site Forum
PSP Subscribers Cont d Annual Symposium 16 th September 2009 Cardiff Carers Information Pack Information on current research Database
How do we support health and social care workers? PSP Professionals
PSP Professionals Access to our specialist nurses for support/advice Professional Membership CIP Leaflets/booklets/literature Study Sessions Reassurance that your patient is receiving expert advice
PSP the future What s next? More Development Officers More Nurses More literature/advice/support More study sessions More services
PSP the future First we need: More money! More Subscribers!
PSP - Dudley Moore 1935-2002
PSP Nigel Dempster 1941-2007
Thank you for listening! Please look at our website: www.pspeur.org or Telephone: 01327 322410 or Email: psp@pspeur.org or Write to us at: The PSP Association PSP House 167 Watling Street West Towcester, Northants, NN12 6BX Nurse Specialist Samantha Pavey 0208 150 6250 samantha.pavey@pspeur.org Development Officer Gina Rutterford 0790 181 3488 gina.rutterford@pspeur.org Registered Charity Number 1037087