Overview on the symptoms, care and support of patients with PSP. Presented by: Gina Rutterford Development Officer East Anglia

Transcription

1 The PSP Association Overview on the symptoms, care and support of patients with PSP Presented by: Gina Rutterford Development Officer East Anglia 1

2 PSP Play Station Portable?

3 Other names Steele Richardson Olszewski Syndrome Parkinson s Plus Atypical Parkinsonism

4 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.

5 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

6 PSP Pathology

7 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

8 Clinical features in 187 cases of PSP falls eye movement speech swallow apathy tremor spasms

9 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

10 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

11 Reduced swallow PSP Swallow Overfill mouth Weak cough reflex-choking Excessive drooling

12 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

13 PSP Cognitive changes Vague changes to personality Intellect largely intact Short term memory loss Impaired judgement Irritability, aggression, apathy Emotional lability Depression

14 PSP Pain Rigidity of muscles (particularly neck) Cramp in muscles Possible contractures

15 Bladder/bowel incontinence Bedwetting Difficulty initiating flow UTI s Constipation PSP Continence Issues

16 PSP Palliative care Progressive condition deterioration is individual Immobile Unable to communicate Unable to eat/drink Restricted vision Incontinent Intellect intact

17 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.

18 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

19 PSP Our Achievements!

20 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

21 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

22 PSP Nurse Specialists Helpline Support Groups Talks/Study sessions Clinics London Cambridge Newcastle Newport Manchester

23 What do they get? PSP Subscribers

24 PSP Subscribers Telephone Helpline Service Local Support Groups PSP Matters Magazine every 4 months Web Site Forum

25 PSP Subscribers Cont d Annual Symposium 16 th September 2009 Cardiff Carers Information Pack Information on current research Database

26 How do we support health and social care workers? PSP Professionals

27 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

28 PSP the future What s next? More Development Officers More Nurses More literature/advice/support More study sessions More services

29 PSP the future First we need: More money! More Subscribers!

30 PSP - Dudley Moore

31 PSP Nigel Dempster

32 Thank you for listening! Please look at our website: or Telephone: or or Write to us at: The PSP Association PSP House 167 Watling Street West Towcester, Northants, NN12 6BX Nurse Specialist Samantha Pavey Development Officer Gina Rutterford Registered Charity Number