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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
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Nerves & brain
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Motor Neurone Disease
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Carers
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Mary - Interview 04
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One doctor told her husband it might not be MND, so they went home and celebrated with champagne. She was devastated when they were told it was MND af
Mary is the wife of man diagnosed with MND a year before interview (2003). (Couple also interviewed together - see Jack's story MND03).
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 knew it would be bad news when they asked his wife to be present. He felt his world had collapsed and there was no hope.
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 50-64
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Marcelin - Interview 37
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When he finally got a diagnosis after 7 years, he felt hopeless and that there was no point going on. It took a long time to accept it and find a way
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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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Phil - Interview 28
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There was a delay between the diagnosis and seeing an MND specialist. All he could think about was being terminally ill. The specialist helped him loo
Phil was diagnosed just over a year ago, after nearly 2 years of leg weakness. He is still able to walk at home but uses a wheelchair and scooter outdoors. He has some weakness in his right arm.
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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Kim - Interview 10
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She suspected it was MND and wanted the doctor to tell her straight. For a few days she couldn't bear to be alone.
Kim was diagnosed with MND (ALS) about a year ago (2005). Now unable to walk she needs help with most daily tasks, but is still working as an occupational therapist and able to drive. Her speech is not affected.
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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The consultant neurologist told him to go home and put his affairs in order. It seemed blunt but he prefers a direct approach.
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 20-49
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Michael - Interview 29
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There is no nice way to tell people they have MND - it will always be 'a hammer blow', however sensitively it is done.
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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Carers
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Bev - Interview 47
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Being present at her mother's diagnosis was devastating. For the next week she felt as if they were on a desert island. She couldn't face the world.
Bev's mother died about a year after developing speech and swallowing difficulties and being diagnosed with bulbar onset MND, aged 72. Her family were unhappy with many aspects of the care received.
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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Gill's first thought was how she was going to tell the family. Mike was calmer than she was. It was hard supporting others when still in shock themsel
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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Bulbar onset
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Ann - Interview 24
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After diagnosis she spent an hour in clinic being given information. It was too much at that stage and she doesn't want to think about the negative si
Ann was diagnosed with bulbar onset MND within the last 6 months (in 2006), after speech and swallowing difficulties. She is about to have a Percutaneous Endoscopic Gastrostomy (PEG).
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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Phil - Interview 28
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At first you can't take in any information. It is a good idea to have another appointment within a week so you can think what you need to ask.
Phil was diagnosed just over a year ago, after nearly 2 years of leg weakness. He is still able to walk at home but uses a wheelchair and scooter outdoors. He has some weakness in his right arm.
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 is glad the doctor did not tell him straight away the worst that could happen. No-one can predict how you will be affected. At a second appointment
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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Bulbar onset
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Vim - Interview 32
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He read all the MND Association information so he knew what he was facing, then put it aside. The information should be available at the hospital when
Vim was diagnosed just over a year ago in 2006 with bulbar onset MND. His speech is affected but he can still talk, and he can still walk independently. He has retired early.
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