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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
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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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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.
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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Continuing part-time work as an occupational therapist is psychologically important. Having MND gives her new insights into her work. She can still dr
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.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - PLS (primary lateral sclerosis)
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James - Interview 16
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He was proud never to have had a day's unemployment. Realising he was not going to work again was hard to accept.
James was diagnosed with Primary Lateral Sclerosis (PLS) 15 years ago (1991). His wife also had MND and died 3 years ago, 2 years after her diagnosis.
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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Martin - Interview 40
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He finds it hard to live on the benefit he gets, and his mum has to help him out financially. He thinks people don't realise how disabling it is to ha
Martin was diagnosed about a year ago in 2006, after a year of weakness in his fingers and hands. Movement in his arms is now very limited, but his legs and speech are not affected.
Nerves & brain
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Motor Neurone Disease
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Bulbar onset
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Ann - Interview 24
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She was depressed after the diagnosis. Her family took her on two holidays before her PEG operation and it was a very healing experience.
Ann was diagnosed with bulbar onset MND within the last 6 months (in 2006), after speech and swallowing difficulties. She is about to have a Percutaneous Endoscopic Gastrostomy (PEG).
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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Martin - Interview 40
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The MND Association helped him pay for a holiday with friends in Amsterdam. It was good to get away and see a different culture.
Martin was diagnosed about a year ago in 2006, after a year of weakness in his fingers and hands. Movement in his arms is now very limited, but his legs and speech are not affected.
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