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

• 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&LT

• Physiotherapy

• Management of secretion

• Review use of equipment

Breathing Space Kit

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.

• mndconnect@mndassociation.org

• Leeds care centre 01133926078.

Thank you for listening

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