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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
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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
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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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Rarer forms - PMA (progressive muscular atrophy)
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Jim - Interview 18
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At first his GP reassured him it was nothing to worry about, but referred him to a neurologist. Within four months of referral he had a diagnosis of P
Jim was diagnosed 2 years ago (2005) with Progressive Muscular Atrophy (PMA) form of MND. His legs and arms are affected but not 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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Phil - Interview 28
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The first GP he saw assumed his symptoms were smoking-related. After a fall he was referred to a neurologist who diagnosed MND after eliminating other
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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Rarer forms - PMA (progressive muscular atrophy)
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Paul - Interview 09
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Acupuncture relaxed him, but he saw no longer term benefits and it cost too much. It made electrical nerve tests seem easy by comparison.
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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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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Ken - Interview 15
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He had various tests including a lumbar puncture. He was the only person in the ward not to develop a bad headache afterwards.
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
>>
Motor Neurone Disease
>>
Rarer forms - PMA (progressive muscular atrophy)
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Judith - Interview 12
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She saw two neurologists before being diagnosed with PMA. She had a range of tests and treatment with intravenous immunoglobulin, which made no differ
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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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.
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