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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 :
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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
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Motor Neurone Disease
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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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Pauline - Interview 30
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She had lengthy investigations and an operation for a spinal cyst which made no difference. Eventually she was told she had MND.
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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Carers
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Mary - Interview 04
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One doctor told her husband it might not be MND, so they went home and celebrated with champagne. She was devastated when they were told it was MND af
Mary is the wife of man diagnosed with MND a year before interview (2003). (Couple also interviewed together - see Jack's story MND03).
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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At first they were told his symptoms did not fit the diagnostic criteria for MND. They were happy to leave it at that. Later PLS was diagnosed. [Peter
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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Carers
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Peter & Olivia - Interview 46
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Peter's daughter's diagnosis remained uncertain for some time, because she was so young and did not fit the normal criteria for MND. This made it hard
Peter's daughter Olivia (aged 22) died within a year of developing pain and weakness in her leg, in late 2006. Diagnosis of MND remained uncertain, as aspects of her condition were unusual.
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