1. Introduction – Anna Conlan Role Regional Care Development Advisor (RCDA)

2. Motor Neurone Disease Terminal disease Incidence: 2 per 100,000 Bradford and Airedale 28 cases Prevalence: 5000 people in UK

3. Motor Neurone Disease Onset and progression is variable – can progress swiftly 90%-95% of people have the sporadic form Adult illness

4. Motor Neurone Disease Amyotrophic Lateral Sclerosis (ALS) –Most common 65% Progressive Bulbar Palsy (PBP) –Affects 25% Progressive Muscular Atrophy (PMA) –Affects 10%

5. Symptoms & Management Muscle wasting & weakness Fasciculation (muscle twitching) Cramps Spasticity Pain Physio & OT Complimentary therapies Medication MND-Riluzole Antispasmodics - Quinine / Baclofen / Zanaflex / Diazepam (Restless leg-Ropinerole / Cabaser)

6. Symptoms & Management Speech & swallowing Saliva & mucus problems Weight Loss Speech & language therapy Dietician Physio & OT PEG/RIG Medication Saliva control - Amitriptyline / Hyoscine / Buscopan / Robinul / Low dose beta blockers / Mucodyne

7. Symptoms & Management Fatigue Emotional problems Counselling Alternative therapies Medication Anxiety - Benzodiazepines ie Diazepam / Lorazepam / Midazolam Antidepressants - including amytriptyline / nortriptyline

8. Clues to Respiratory Muscle Involvement in MND Breathlessness Poor sleep Daytime Headaches Nocturnal Sweating Observation Physiotherapy Respiratory assessment Overnight pulse oximetrey Referral to respiratory consultant

9. Rarely Affected Senses Bowel & bladder function Sexual function Eye muscles Heart muscles Intellect

10. Cognitive Impairment Manifestations Management issues Dementia

11. Tests may include blood tests, MRI, LP, EMG/NCS, myelogram, muscle biopsy Diagnosis

12. Choking Explain cause and management Refer to advice of S&LT Physiotherapy Management of secretion Review use of equipment

13. Breathing Space Kit

14. Causes of MND?

15. Multidisciplinary Approach

16. Care Development

17. What the Association Contributes

18. Standards of Care Quality of life for people living with MND

19. Anna Conlan, telephone: 0845 3751841 Website – www.mndassociation.org MND Connect 08457 626262 (lo-call rate) for all. mndconnect@mndassociation.org Leeds care centre 01133926078. Thank you for listening

20. Together We Make A Difference