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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 other
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
Clip
Nerves & brain
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 65+
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Audrey - Interview 02
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The first thing she noticed was difficulty pegging clothes on the line.
Audrey first noticed symptoms 11-12 years ago. Diagnosis confirmed three years later (1995). Still living at home with support from a daily carer and respite care in a hospice.
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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She developed symptoms in pregnancy. She believes the neurologist knew at once what was wrong but didn't tell her. She would have preferred to know. [
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.
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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Sandy - Interview 36
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He applied for Disability Living Allowance but carried on working until he could no longer hold a telephone and take notes at the same time.
Sandy was diagnosed 5 years ago (2002) after noticing weakness in one arm. His arms have been worst affected, and now his speech and neck muscles are deteriorating, but he can still walk well.
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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Penny - Interview 11
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At work she began finding it hard to lift heavy files onto a shelf. Her hands used to shake, and she developed coughing fits.
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.
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 enjoyed working in construction, but he had to give up because he just couldn't do it physically any more.
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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ALS- amyotrophic lateral sclerosis/MND aged 20-49
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Martin - Interview 40
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He found he was struggling to do up shoelaces and his hands started shaking when holding a drill at work.
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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Sarah - Interview 21
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After some frustrating failed experiments with voice software, she successfully uses a system called EZ Keys with a chin switch. [Voice software inter
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.
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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Ken - Interview 15
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His arm felt stiff when he woke every morning, and he noticed fasciculations and cramps. His hand became weaker and he found it hard to operate his ca
Ken was diagnosed with amyotrophic lateral sclerosis (ALS) form of MND 5 years ago (2002). His arm muscles were affected first, followed by his leg muscles. His speech is not affected and his condition has progressed more slowly than he originally expected.
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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Sandy - Interview 36
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He'd like to see a keyboard you can use on the TV set so other people can share in what you're typing.
Sandy was diagnosed 5 years ago (2002) after noticing weakness in one arm. His arms have been worst affected, and now his speech and neck muscles are deteriorating, but he can still walk well.
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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Ken - Interview 15
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He uses voice recognition software, which helps him prepare written documents and presentations now that his arms are weaker. The MNDA helped pay for
Ken was diagnosed with amyotrophic lateral sclerosis (ALS) form of MND 5 years ago (2002). His arm muscles were affected first, followed by his leg muscles. His speech is not affected and his condition has progressed more slowly than he originally expected.
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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He noticed his right arm was weaker than his left arm when lifting weights one day. Gradually he found it hard to lift his arm. His GP thought it migh
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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ALS- amyotrophic lateral sclerosis/MND aged 20-49
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Michael - Interview 29
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Limited arm movement is his main practical problem. He has worked out ways to compensate, for example to lift a glass or pull up the duvet.
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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ALS- amyotrophic lateral sclerosis/MND aged 20-49
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Martin - Interview 40
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Day-to-day living is hard, especially eating, washing and dressing. His hands get tend to get cold and seize up.
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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Rarer forms - PMA (progressive muscular atrophy)
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Roland - Interview 17
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If you explain your mobility problems and ask people for help they are usually very kind and sympathetic.
Roland was diagnosed 7 years ago (1999) with Progressive Muscular Atrophy (PMA) form of MND. His hand muscles are affected but not his speech.
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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Ken - Interview 15
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When he couldn't use hand controls, he was given a wheelchair with a chin switch. It is better designed for controlling steering. He'd like a longer-l
Ken was diagnosed with amyotrophic lateral sclerosis (ALS) form of MND 5 years ago (2002). His arm muscles were affected first, followed by his leg muscles. His speech is not affected and his condition has progressed more slowly than he originally expected.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Roland - Interview 17
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He tries to keep warm and avoid falls - his arms are too weak to break his fall. He uses his head to operate the shower, and has learnt to 'throw his
Roland was diagnosed 7 years ago (1999) with Progressive Muscular Atrophy (PMA) form of MND. His hand muscles are affected but not his speech.
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 - PMA (progressive muscular atrophy)
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Judith - Interview 12
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She lost weight and was advised to eat high calorie, high fat foods and fortified drinks. A big plate of food is too daunting. She prefers not to eat
Judith was diagnosed with Progressive Muscular Atrophy form of MND two years ago, after consulting two neurologists. Now she uses a wheelchair and mobility scooter.
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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Rarer forms - familial/inherited
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Liz - Interview 39
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She still enjoys her food and eating out, even though she thought she'd be embarrassed about being helped to eat in public.
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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Rarer forms - PMA (progressive muscular atrophy)
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Judith - Interview 12
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She has adapted to changes in her arms and legs. She managed cooking by getting her husband to lift heavy pans and hot dishes. She took up hobbies whi
Judith was diagnosed with Progressive Muscular Atrophy form of MND two years ago, after consulting two neurologists. Now she uses a wheelchair and mobility scooter.
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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People seem to feel awkward about reaching out to touch her hand or place something in it. The most helpful thing is when people anticipate her needs.
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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