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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
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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 65+
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Audrey - Interview 02
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She does not want to go to the day centre at the hospice where she sometimes has respite care. She does not want to meet others with MND or talk about
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 - familial/inherited
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Liz - Interview 39
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She enjoyed a hospice support group in New Zealand but now she's back in the UK she's not sure she wants to join another group, especially with other
Liz was diagnosed with inherited form of MND in 2004. (Her father and uncle both had MND). Weakness in her legs progressed to her arms; she is now in a wheelchair. Her speech is unaffected.
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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As someone with PLS, she felt meeting people with more rapidly progressing forms of MND would be too upsetting, but more recently she has decided to t
'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 - familial/inherited
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Ken - Interview 34
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Ken is happy to have day care at the hospice, but she finds it hard to see him there and thinks the volunteers are sometimes a bit over-enthusiastic.
Ken was diagnosed with rare inherited (familial) form of MND less than a year ago (2006). He has limited arm and leg movement, has a PEG and uses a Lightwriter to speak, but carried on working until a month ago. Interviewed through his wife Chris.
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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Penny - Interview 11
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A Living Will makes her wishes clear even if she can no longer express them. She wants the best quality of life she can without invasive intervention,
Penny was diagnosed three years ago (2003) with ALS, after having arm weakness, pains and coughing fits for three years. The condition has progressed quite slowly so far.
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