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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

Peter was diagnosed with primary lateral sclerosis (PLS) 8 years ago (1998). Symptoms progressed quickly at first, but now more slowly. His speech was severely affected, so he was interviewed through his wife Ann. His mobility is also affected.

Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Peter - Interview 38 >> He feels 'doing nothing is not an option'. The NHS should offer more active support such as physiotherapy. He pays to have a private physio every day.

Peter was diagnosed three years ago (2004). Symptoms started in his arms and hands, and progressed to his legs. He now uses a wheelchair full-time.

Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Liz - Interview 39 >> Aromatherapy helps her breathing. She likes massage and has tried acupuncture. Meditation makes her feel calmer and stronger when she feels down.

Liz was diagnosed with inherited form of MND in 2004. (Her father and uncle both had MND). Weakness in her legs progressed to her arms; she is now in a wheelchair. Her speech is unaffected.

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