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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 :
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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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Bulbar onset
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Sue - Interview 31
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She uses cranial-sacral therapy, acupuncture, and aromatherapy. She takes tomato juice for excess saliva, and echinacea and Bach Flower Remedies. [Voi
Sue was diagnosed with bulbar onset motor neurone disease less than a year ago (2006). She is now unable to speak and uses a laptop with voice software. Her arms and legs are still relatively strong.
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 takes noni juice and ginseng, and sour milk. He is careful about diet, but feels a little alcohol can be beneficial.
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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Rarer forms - PLS (primary lateral sclerosis)
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Peter - Interview 20
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They consulted a homeopath but decided not to follow the advice given. They don't believe in 'quirky things' which claim to stop the progress of MND.
Peter was diagnosed with primary lateral sclerosis (PLS) 8 years ago (1998). Symptoms progressed quickly at first, but now more slowly. His speech was severely affected, so he was interviewed through his wife Ann. His mobility is also affected.
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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He has read up on lots of different causes. He worked in farming and wonders whether exposure to sheep dip affected him, or whether it's just chance.
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 65+
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Sylvia - Interview 25
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She wonders if hairdressing products might have caused a cluster locally, but it seems unlikely. She also wonders about the effects of stress and pest
Sylvia was diagnosed a year ago in 2005, after noticing difficulties walking. She can move around at home with a trolley, and uses a wheelchair or scooter outdoors. She uses non-invasive ventilation regularly.
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 lost weight and was advised to eat high calorie, high fat foods and fortified drinks. A big plate of food is too daunting. She prefers not to eat
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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Bulbar onset
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Sue - Interview 31
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She has several tips to help with eating and swallowing. [Voice software interview].
Sue was diagnosed with bulbar onset motor neurone disease less than a year ago (2006). She is now unable to speak and uses a laptop with voice software. Her arms and legs are still relatively strong.
Nerves & brain
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Motor Neurone Disease
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Carers
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Harry - Interview 43
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His wife is sometimes sad that she can't eat what everyone else is eating. He feels guilty that he can still enjoy food when she can't.
Harry's wife was diagnosed with bulbar onset MND two and a half years ago. She is now unable to speak. She finds swallowing very difficult, and has a PEG fitted.
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