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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 other
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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Bulbar onset
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Mike - Interview 23
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He was aware his speech was becoming slurred before anyone else noticed, until one day at work someone assumed he must be drunk. [Mike is unable to sp
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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Carers
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Roger - Interview 41
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When his wife started to slur her speech people thought she'd had too much to drink. He noticed she was becoming frustrated and agitated.
Roger was married to Teresa, who was diagnosed with bulbar onset MND. She died a year ago, aged 64, less than six months after the diagnosis.
Nerves & brain
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Motor Neurone Disease
>>
Bulbar onset
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Sue - Interview 31
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She went to a fit-ball class to help with aching in her neck and arms, and afterwards found she could not speak properly. [Voice software interview].
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
>>
Motor Neurone Disease
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Rarer forms - familial/inherited
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Ken - Interview 34
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He had coughing fits which became so bad he started to eat lunch alone in case it made him choke. They did not realise MND could be hereditary. [Ken i
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.
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