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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 :
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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
Health and social care professionals :
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Motor Neurone Disease
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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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Jack - Interview 03
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He had such a bad reaction to the lumbar puncture that his wife called an ambulance. It would have helped to be told more about what to expect.
Jack was diagnosed with MND a year before interview (2003), after some years of leg pain and stiffness. Symptoms have progressed slowly, still mainly leg weakness. He now uses a walking frame. (Wife Mary present, also interviewed separately MND04).
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 had various tests including a lumbar puncture. He was the only person in the ward not to develop a bad headache afterwards.
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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Bulbar onset
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Sarah - Interview 21
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She developed symptoms in pregnancy. She believes the neurologist knew at once what was wrong but didn't tell her. She would have preferred to know. [
Sarah was diagnosed 7 years ago when 7 months pregnant with her second baby in 2000. Now she cannot use her arms or walk unaided, and her speech is affected, so she uses voice software to communicate.
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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