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Nerves & brain
Motor Neurone Disease
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Diagnosis :
First symptoms
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Immediate reactions to diagnosis
Possible causes of MND (including familial MND)
Telling others
Treatment/ interventions :
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PEGs, RIGs and ventilation
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Work/ career and money :
Work and career
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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
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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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Rarer forms - PMA (progressive muscular atrophy)
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Judith - Interview 12
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She was prepared for the diagnosis and the professor was kind and reassuring. She told her every patient is different and not to worry about all the d
Judith was diagnosed with Progressive Muscular Atrophy form of MND two years ago, after consulting two neurologists. Now she uses a wheelchair and mobility scooter.
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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His OT is good at forecasting what equipment he'll need before he realises it. It's reassuring to know she can provide solutions as things progress.
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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Carers
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Jenny - Interview 01
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She worried how her father would die and feared he might choke on saliva, but she wants to reassure others that death was very peaceful. She wanted th
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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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Marcelin - Interview 37
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He has been impressed with the quality of the support network locally. He feels completely taken care of and that gives him confidence.
Marcelin was diagnosed over three years ago (in 2003), after several years of weakness in his arms, and later his legs. He now uses a wheelchair. His speech is unaffected. He continues to work full-time. (Partner Tess also interviewed, MND44).
Nerves & brain
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 65+
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Cordelia - Interview 13
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Her consultant has reassured her about what the end of life will be like. She has some faith, but death is hard to come to terms with. She feels frigh
Cordelia was diagnosed a year ago (2005) with MND after investigations for other conditions including spinal muscular atrophy. She now has considerable muscle weakness.
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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Her father had no religious belief and she didn't know how to console him. Our society is not good at talking about death.
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.
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