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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
Messages for 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 has thought of many things which might have caused her MND including injury, stress, dental fillings and crop-spraying near her house. [Voice soft
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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Slawomir - Interview 33
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He has thought about lots of possible causes. He has spent time near laundry chemicals, but not as much time as the laundry workers themselves.
Slawomir was diagnosed 3 months ago, 18 months after first noticing weakness in his leg. He wonders if he may in fact have Lyme Disease. He can still walk and drive.
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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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Penny - Interview 11
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At work she began finding it hard to lift heavy files onto a shelf. Her hands used to shake, and she developed coughing fits.
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.
Nerves & brain
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 20-49
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Michael - Interview 29
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He and his wife have become closer, but sometimes they get frustrated. He admires how strong his wife has been for both of them.
Michael was diagnosed less than a year ago in 2006 after noticing weakness in his right arm. His arm weakness remains his main symptom, and it has got worse. Currently he is on sick leave from work.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Jim - Interview 18
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Living with MND can bring out problems in a relationship, but he and his wife feel close enough to work things through without counselling.
Jim was diagnosed 2 years ago (2005) with Progressive Muscular Atrophy (PMA) form of MND. His legs and arms are affected but not speech.
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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Her husband finds it stressful caring for her and working. It has affected their relationship, but he'd find paid carers in their bedroom and bathroom
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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Rarer forms - PMA (progressive muscular atrophy)
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Pauline - Interview 30
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She gets irritated that she cannot run the household and has to let her husband do it. He finds it hard to take on the role of carer, which he had nev
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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Harry - Interview 43
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Sometimes he gets impatient waiting for his wife to say something with her Lightwriter, which he knows he shouldn'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.
Nerves & brain
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Motor Neurone Disease
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Bulbar onset
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Mike - Interview 23
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Their sex life has not been affected, but they miss talking to each other. It can be challenging being together so much and sometimes they need space.
Mike was diagnosed with bulbar onset MND 2 years ago in 2005. He is now unable to speak, so was interviewed through his wife Gill. He uses a whiteboard and Lightwriter to communicate. He has a PEG (Percutaneous Endoscopic Gastrostomy).
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