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Nerves & brain
Motor Neurone Disease
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Diagnosis :
First symptoms
Path to diagnosis
Immediate reactions to diagnosis
Possible causes of MND (including familial MND)
Telling others
Treatment/ interventions :
Medication, trials and research
PEGs, RIGs and ventilation
Complementary therapies and alternative treatments
Physical therapy and exercise
Information and support :
Information needs
Support groups and meeting others
Work/ career and money :
Work and career
Finances and benefits
Living with MND :
Mobility, arm and leg weakness
Aids, equipment and adaptations
Personal care and care support
Speech and communication
Eating, swallowing and breathing
Tiredness, pain and discomfort
Forgetfulness and thinking
Emotional lability, depression and low mood
Relationships and sex
Leisure, holidays and travel
Impact on family carers
Feelings about life and the future :
Philosophy, attitude to life and messages to others
Hospices, respite and thoughts about future care
Thoughts about death, dying and bereavement
Health and social care professionals :
Coordination of care
Messages for professionals
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Motor Neurone Disease
Subject index
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Nerves & brain
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Phil - Interview 28
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The first GP he saw assumed his symptoms were smoking-related. After a fall he was referred to a neurologist who diagnosed MND after eliminating other
Phil was diagnosed just over a year ago, after nearly 2 years of leg weakness. He is still able to walk at home but uses a wheelchair and scooter outdoors. He has some weakness in his right arm.
Nerves & brain
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 65+
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Audrey - Interview 02
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The first thing she noticed was difficulty pegging clothes on the line.
Audrey first noticed symptoms 11-12 years ago. Diagnosis confirmed three years later (1995). Still living at home with support from a daily carer and respite care in a hospice.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Roland - Interview 17
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He tries to keep warm and avoid falls - his arms are too weak to break his fall. He uses his head to operate the shower, and has learnt to 'throw his
Roland was diagnosed 7 years ago (1999) with Progressive Muscular Atrophy (PMA) form of MND. His hand muscles are affected but not his speech.
Nerves & brain
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Ken - Interview 15
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Gradually he found it harder to get up from sitting, and he had several falls. His wife can't lift him but buying a lightweight mobile hoist has helpe
Ken was diagnosed with amyotrophic lateral sclerosis (ALS) form of MND 5 years ago (2002). His arm muscles were affected first, followed by his leg muscles. His speech is not affected and his condition has progressed more slowly than he originally expected.
Nerves & brain
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Peter - Interview 38
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He fell on the stairs and within a year could no longer walk. His hand is too weak to operate a scooter. He tried to keep mobile and resist using equi
Peter was diagnosed three years ago (2004). Symptoms started in his arms and hands, and progressed to his legs. He now uses a wheelchair full-time.
Nerves & brain
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Motor Neurone Disease
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Carers
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Jenny - Interview 01
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Looking back her father had several symptoms before they noticed something was wrong. It was hard to tell what was unusual and what was old age.
Jenny is the daughter of a man who was diagnosed in 2001 with motor neurone disease at the age of 81, and who died 4 months later. He was ill for a year before diagnosis.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Pauline - Interview 30
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She and her daughters laugh about it when she falls over. Life is too short to get upset about it.
Pauline was diagnosed with PMA (progressive muscular atrophy) about 2 years ago (2005), after several years of leg weakness. She cannot walk far and uses a wheelchair, but is still able to work full-time.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Pauline - Interview 30
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One day when out running she noticed she couldn't control her left leg. She began tripping over a lot, but put it down to clumsiness.
Pauline was diagnosed with PMA (progressive muscular atrophy) about 2 years ago (2005), after several years of leg weakness. She cannot walk far and uses a wheelchair, but is still able to work full-time.
Nerves & brain
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 65+
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Derek - Interview 27
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He first thought something was wrong when he noticed muscle twitching when playing golf. One time he missed the ball and fell over.
Derek was diagnosed 5-6 years ago (2001 or 2002). His arms and legs are affected but he is still able to walk unaided round the house. Finds his memory for words is being affected.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - PLS (primary lateral sclerosis)
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'Speedy' - Interview 19
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She had foot drop and aching leg muscles at first. Later, she began having balance problems and noticed rapid muscle contractions, especially when dri
'Speedy' was diagnosed with primary lateral sclerosis (PLS) nearly 2 years ago (in 2005) after 2 years of increasing leg weakness. She now uses a wheelchair and a hand-operated car.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Roland - Interview 17
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If you explain your mobility problems and ask people for help they are usually very kind and sympathetic.
Roland was diagnosed 7 years ago (1999) with Progressive Muscular Atrophy (PMA) form of MND. His hand muscles are affected but not his speech.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - familial/inherited
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Liz - Interview 22
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It was hard having personal care from different carers she didn't know, and tiring explaining everything to each new person. Now she has someone she l
Liz was diagnosed with rare inherited (familial) form of MND 8 years ago (1998). Sixth member of her family to be diagnosed. Has weakness in her arms and legs, and some speech difficulties. Has a PEG but does not use it yet.
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