• Introduction – Anna Conlan
Role Regional Care Development Advisor (RCDA)
Motor Neurone Disease
• Terminal disease
• Incidence: 2 per 100,000
• Bradford and Airedale 28 cases
• Prevalence: 5000 people in UK
Motor Neurone Disease
• Onset and progression is variable – can progress swiftly
• 90%-95% of people have the sporadic form
• Adult illness
Motor Neurone Disease
• Amyotrophic Lateral Sclerosis (ALS)– Most common 65%
• Progressive Bulbar Palsy (PBP)– Affects 25%
• Progressive Muscular Atrophy (PMA)– Affects 10%
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)
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
Symptoms & Management
• Fatigue• Emotional problems
• Counselling• Alternative therapies• Medication• Anxiety -
Benzodiazepines ie Diazepam / Lorazepam / Midazolam
• Antidepressants - including amytriptyline / nortriptyline
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
Rarely Affected
• Senses
• Bowel & bladder function
• Sexual function
• Eye muscles
• Heart muscles
• Intellect
Cognitive Impairment
• Manifestations
• Management issues
• Dementia
• Tests may include blood tests, MRI, LP, EMG/NCS, myelogram, muscle biopsy
Diagnosis
Choking
• Explain cause and management
• Refer to advice of S<
• Physiotherapy
• Management of secretion
• Review use of equipment
Causes of MND?
Multidisciplinary Approach
Care Development
What the Association Contributes
Standards of Care
• Quality of life for people living with MND
• Anna Conlan, telephone: 0845 3751841
• Website – www.mndassociation.org
• MND Connect 08457 626262 (lo-call rate) for all.
• Leeds care centre 01133926078.
Thank you for listening
Together We Make A Difference