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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

'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 >> Motor Neurone Disease >> Carers >> Una & Bill - Interview 49 >> Their MND Association Regional Care Development Adviser and their GP have been excellent in coordinating services.

Una's husband Bill first noticed symptoms at the end of 2005 and was diagnosed aged 63. A ventilator greatly improved his energy levels for nearly a year. He had a PEG fitted but does not yet use it for feeding.

Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Penny - Interview 11 >> The MND specialist clinic feels well coordinated but not some other aspects of care. She'd like a one-stop point of contact.

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.

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