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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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Mike - Interview 23
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Gill's first thought was how she was going to tell the family. Mike was calmer than she was. It was hard supporting others when still in shock themsel
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).
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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Sandy - Interview 36
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He told his son first as they were going to a football match after the appointment. He told his wife when he got home and his daughter and colleagues
Sandy was diagnosed 5 years ago (2002) after noticing weakness in one arm. His arms have been worst affected, and now his speech and neck muscles are deteriorating, but he can still walk well.
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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His grown-up children have all reacted differently. One son has been more emotional than he expected.
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 20-49
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Michael - Interview 29
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He wants his children (aged 11 and 9) to enjoy their childhood. They have not told them everything about the condition but they do not lie to 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 - PLS (primary lateral sclerosis)
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'Speedy' - Interview 19
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She didn't tell her son (now 13) the name of the condition at first but explained she might need a wheelchair soon. He didn't want to talk about it an
'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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ALS- amyotrophic lateral sclerosis/MND aged 20-49
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Kim - Interview 10
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She wanted to protect her children (now 12 and 10) from worrying about it but in the end told them she wouldn't get better. The hardest thing is seein
Kim was diagnosed with MND (ALS) about a year ago (2005). Now unable to walk she needs help with most daily tasks, but is still working as an occupational therapist and able to drive. Her speech is not affected.
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