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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
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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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As an OT she suspected she might have MND. She describes the diagnostic tests, including an EMG, blood tests, an MRI scan and an x-ray of her spine.
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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Slawomir - Interview 33
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He had problems getting referred to neurology and had long waits between appointments. In the end he saw a neurologist privately and had a private MRI
Slawomir was diagnosed 3 months ago, 18 months after first noticing weakness in his leg. He wonders if he may in fact have Lyme Disease. He can still walk and drive.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - PLS (primary lateral sclerosis)
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Peter - Interview 20
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At first they were told his symptoms did not fit the diagnostic criteria for MND. They were happy to leave it at that. Later PLS was diagnosed. [Peter
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
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Motor Neurone Disease
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Carers
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Peter & Olivia - Interview 46
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Peter's daughter's diagnosis remained uncertain for some time, because she was so young and did not fit the normal criteria for MND. This made it hard
Peter's daughter Olivia (aged 22) died within a year of developing pain and weakness in her leg, in late 2006. Diagnosis of MND remained uncertain, as aspects of her condition were unusual.
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