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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 65+
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Sylvia - Interview 25
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Non-invasive ventilation has made a big difference. It helps her sleep properly at night and during an afternoon nap, so she has enough energy for the
Sylvia was diagnosed a year ago in 2005, after noticing difficulties walking. She can move around at home with a trolley, and uses a wheelchair or scooter outdoors. She uses non-invasive ventilation regularly.
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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Marcelin - Interview 37
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His Living Will states that he does not want any ventilation. He wants those caring for him to let him go slowly and naturally. He does not want to be
Marcelin was diagnosed over three years ago (in 2003), after several years of weakness in his arms, and later his legs. He now uses a wheelchair. His speech is unaffected. He continues to work full-time. (Partner Tess also interviewed, MND44).
Nerves & brain
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Paul - Interview 09
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He uses a ventilator most of the time, which enables him to speak normally. He has adapted well to it, but can't be left alone for too long.
Paul's diagnosis of progressive muscular atrophy was confirmed 2 years ago (2004) after several years of leg pain and weakness. Now unable to walk and he has limited arm movement. Uses a ventilator, but his speech is not affected. He worked until 6 months ago.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - familial/inherited
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Liz - Interview 22
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Her Living Will protects her children from difficult decisions. You can set out what treatments you want, as well as what you don't want. Press covera
Liz was diagnosed with rare inherited (familial) form of MND 8 years ago (1998). Sixth member of her family to be diagnosed. Has weakness in her arms and legs, and some speech difficulties. Has a PEG but does not use it yet.
Nerves & brain
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Motor Neurone Disease
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Carers
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Ann & Barry - Interview 48
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She felt she had become a carer when her husband needed to use ventilation every night. It was strange when he started using it but she is used to it
Ann's husband Barry was diagnosed with MND about 10 years ago (1997) at the age of 49, after two years of symptoms and tests. (Since identified as primary lateral sclerosis - PLS).
Nerves & brain
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Motor Neurone Disease
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Carers
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Una & Bill - Interview 49
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Non-invasive ventilation hugely improved her husband's quality of life, but now they realise how dependent on it he is they are having to think about
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
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Motor Neurone Disease
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Carers
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Roger - Interview 41
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As Teresa became weaker, a PEG was suggested. She developed breathing difficulties and had non-invasive ventilation but would not have wanted invasive
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
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Carers
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Ann & Barry - Interview 48
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Her husband uses a ventilator. She describes two frightening occasions when he briefly stopped breathing and she revived him. It happens sometimes whe
Ann's husband Barry was diagnosed with MND about 10 years ago (1997) at the age of 49, after two years of symptoms and tests. (Since identified as primary lateral sclerosis - PLS).
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