1. SYMPTOM CONTROL IN ADVANCED PARKINSON’S DISEASE Vicky Travers PDNSUHMBT April 2012

2. Parkinson’s Disease A fluctuating, progressive, neurological condition A fluctuating, progressive, neurological condition Results from degeneration of dopamine- producing neurones in substantia nigra Results from degeneration of dopamine- producing neurones in substantia nigra 1:500 (approx 120,000 people in UK) 1:500 (approx 120,000 people in UK) Increasingly prevalent with age Increasingly prevalent with age

3. Parkinson’s disease con’d Clinical diagnosis (NICE guidelines 2006) Clinical diagnosis (NICE guidelines 2006) Motor symptoms / non-motor symptoms Motor symptoms / non-motor symptoms Cause not known Cause not known Incurable but treatable Incurable but treatable Not life threatening, but can be life limiting Not life threatening, but can be life limiting

4. Core Symptoms for diagnosis Rigidity – raised tone in muscles Rigidity – raised tone in muscles Postural Instability – poor balance (often presents as a later feature) Postural Instability – poor balance (often presents as a later feature) Tremor – resting, asymmetrical, 70 % PwPD Tremor – resting, asymmetrical, 70 % PwPD Bradykinesia – slowness of movement Bradykinesia – slowness of movement

5. Progression of PD Individual progression rate Individual progression rate Individual manifestation of symptoms Individual manifestation of symptoms Individual response / side effects to medications Individual response / side effects to medications = Need for individualised care throughout disease trajectory = Need for individualised care throughout disease trajectory

6. Stages of Parkinson’s Disease Diagnosis Diagnosis Maintenance Maintenance Complex Complex Palliative Palliative

7. Palliative Care Should “Offer pain relief and meet needs for personal, social, psychological and spiritual support, in line with principles for palliative care” NSF for Long Term Neurological Conditions (Quality requirement 9) Advanced care planning Advanced care planning Progressive dopaminergic drug withdrawal Progressive dopaminergic drug withdrawal Analgesia, sedation and other palliative measures Analgesia, sedation and other palliative measures Primary and/or secondary care depending on circumstances Primary and/or secondary care depending on circumstances

8. Non-motor symptoms Cognition Cognition Pain Pain Autonomic symptoms Autonomic symptoms Sleep disturbance Sleep disturbance Communication Communication Swallowing Swallowing Weight loss Weight loss

9. Cognition Anxiety Anxiety Depression Depression Apathy Apathy Cognitive impairment Cognitive impairment Dementia Dementia Psychosis Psychosis

10. Symptom control Review PD meds Review PD meds ? Antidepressants – Mirtazapine ? Antidepressants – Mirtazapine CBT / talking therapy/ support CBT / talking therapy/ support Cholinesterase inhibitors Cholinesterase inhibitors Atypical antipsychotics – Quetiapine Atypical antipsychotics – Quetiapine Avoid Haloperidol!!! Avoid Haloperidol!!!

11. Pain Common and under-reported Common and under-reported Several types of pain [Primary or Secondary] Several types of pain [Primary or Secondary] Musculoskeletal – rigidity or dyskinesia Musculoskeletal – rigidity or dyskinesia Dystonic Dystonic Off phase pain Off phase pain Coat hanger pain – postural hypotension Coat hanger pain – postural hypotension Burning mouth, anal burning Burning mouth, anal burning Akathisia/restlessness - RLS Akathisia/restlessness - RLS

12. Symptom Control Careful assessment Careful assessment Exclude co-morbidities Exclude co-morbidities Review Parkinson’s medication – optimise dopaminergic treatment Review Parkinson’s medication – optimise dopaminergic treatment Analgesia Analgesia Complementary therapies Complementary therapies

13. Autonomic symptoms (dysautonomia) Postural Hypotension Postural Hypotension Sexual dysfunction Sexual dysfunction Bladder / bowel dysfunction Bladder / bowel dysfunction Sweating (Hyperhidrosis) Sweating (Hyperhidrosis) Drooling (Sialorrhoea) Drooling (Sialorrhoea)

14. Symptom Control Medication Medication Review PD meds, Hyoscine, Atropine drops sublingually (beware neuropsychiatric side effects) for drooling Domperidone (anecdotal evidence), Fludrocortisone, Midodrine for postural hypotension MDT MDT SALT, Continence team, nursing team, dietician

15. Sleep disturbance REM sleep behaviour disorder REM sleep behaviour disorder Akinesia / rigidity Akinesia / rigidity Dyskinesia Dyskinesia Restlessness Restlessness Urinary problems Urinary problems Hypersomnolence Hypersomnolence Bad dreams / hallucinations Bad dreams / hallucinations

16. Symptom Control Good sleep hygiene Good sleep hygiene Medication – Medication – Modafinal for hypersomnolence Clonazapam for REM sleep behaviour review Dopaminergic treatment review Dopaminergic treatment atypical antipsychotic atypical antipsychotic (beware side effects/ contraindications) MDT MDT

17. Communication Verbal and non-verbal Verbal and non-verbal Mask like facies (Hypomimia) Mask like facies (Hypomimia) reduced volume (Hypophonia) reduced volume (Hypophonia) “Stuttery” speech “Stuttery” speech Repitition of syllables or words (Palilalia) Repitition of syllables or words (Palilalia) Monotone and monopitch Monotone and monopitch

18. Symptom Control MDT especially SLT MDT especially SLT Alternative communication techniques Alternative communication techniques - Charts, amplifier, lightwriter, IPAD - Charts, amplifier, lightwriter, IPAD Education/ support for PwPD/ carers / family

19. Swallowing disorders Reduced tongue motility / co-ordination Reduced tongue motility / co-ordination Food remaining in epiglottic vallecula Food remaining in epiglottic vallecula Decreased ability to chew Decreased ability to chew Delay of pharyngeal swallow Delay of pharyngeal swallow Reduced laryngeal closure Reduced laryngeal closure Aspiration Aspiration

20. Symptom Control Speech and Language Therapy input Speech and Language Therapy input Dietician Dietician Medication review - ? Change preparation of medication Medication review - ? Change preparation of medication Thickened fluids Thickened fluids Observed / assisted feeding Observed / assisted feeding Education for Pwpd / Carers / family Education for Pwpd / Carers / family

21. Weight Loss Dyskinesia Dyskinesia Rigidity Rigidity Dysphagia Dysphagia Poor intake due to reduced ability / appetite Poor intake due to reduced ability / appetite

22. Symptom Control Dietician / SLT Dietician / SLT Medication review Medication review Maintain hydration Maintain hydration Skin care Skin care Mouth care Mouth care Assisted feeding Assisted feeding

23. Please Remember…… ……….Not all solutions work for all people………………. ……… Sometimes just being there is enough……………….

24. Thank you Thank you Any Questions? Any Questions? Vicky.travers@mbht.nhs.uk 01524 583611 / 07765351985

25. References National Service framework for Long Term Conditions. DoH (2005) Parkinson’s UK http://www.parkinsons.org.uk/ Parkinson’s UK http://www.parkinsons.org.uk/ http://www.parkinsons.org.uk/ Parkinson’s Disease. Diagnosis and Management in primary and secondary care. NICE (2006) Parkinson’s Disease. Diagnosis and Management in primary and secondary care. NICE (2006)