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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
Messages for professionals
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Motor Neurone Disease
Subject index
Topic
Nerves & brain
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Motor Neurone Disease
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Relationships and sex
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Relationships and sex
Relationships and sex
Nerves & brain
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Motor Neurone Disease
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Relationships and sex
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Relationships and sex
Relationships and sex
Clip
Nerves & brain
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Motor Neurone Disease
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Carers
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Dick - Interview 42
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Caring for his wife made them closer than ever before, and they put aside trivia and disagreements. It was important to continue to have a sex life.
Dick was married to Di, who was diagnosed with MND two and a half years ago (2004). She died 6 months ago, aged 64.
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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Their sex life has not been affected, but they miss talking to each other. It can be challenging being together so much and sometimes they need space.
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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ALS- amyotrophic lateral sclerosis/MND aged 65+
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Derek - Interview 27
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It saddens him that they can no longer have sex, but he tries to cuddle his wife and be as physical as he can.
Derek was diagnosed 5-6 years ago (2001 or 2002). His arms and legs are affected but he is still able to walk unaided round the house. Finds his memory for words is being 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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Michael - Interview 29
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They are still able to have a normal sex life. Bearing weight on his arms is difficult, but they find ways round it.
Michael was diagnosed less than a year ago in 2006 after noticing weakness in his right arm. His arm weakness remains his main symptom, and it has got worse. Currently he is on sick leave from work.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - familial/inherited
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Liz - Interview 39
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She misses being able to show physical affection. Now she has learnt to ask people for a kiss or a hug.
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.
Nerves & brain
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Motor Neurone Disease
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Bulbar onset
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Sarah - Interview 21
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Her husband couldn't cope and left. She thought no-one could find her attractive but she met someone who made her feel beautiful and happy again. [Voi
Sarah was diagnosed 7 years ago when 7 months pregnant with her second baby in 2000. Now she cannot use her arms or walk unaided, and her speech is affected, so she uses voice software to communicate.
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