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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
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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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ALS- amyotrophic lateral sclerosis/MND aged 65+
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Shyam - Interview 35
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A course of physiotherapy helped, but now he often forgets to keep doing the exercise. He likes having hydrotherapy once a week.
Shyam was diagnosed with MND about six months ago (2006). He has difficulty walking and uses a wheelchair. His speech is slowing down and his voice is changing.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Pauline - Interview 30
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She goes to the gym as much as she wants. Keeping fit and active helps her fight the condition and stay positive.
Pauline was diagnosed with PMA (progressive muscular atrophy) about 2 years ago (2005), after several years of leg weakness. She cannot walk far and uses a wheelchair, but is still able to work full-time.
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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He lost muscle strength each time he was in hospital and found it hard to get active again. Before diagnosis he was referred to a gym, but that was to
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 50-64
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Peter - Interview 38
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He feels 'doing nothing is not an option'. The NHS should offer more active support such as physiotherapy. He pays to have a private physio every day.
Peter was diagnosed three years ago (2004). Symptoms started in his arms and hands, and progressed to his legs. He now uses a wheelchair full-time.
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 would have liked physiotherapy as soon as she was diagnosed, to stop her leg muscles getting so tight, but she knows it cannot slow progression.
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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Physiotherapy on his feet helps, so he's disappointed it's not provided locally. The physios have shown his wife what to do but she already has too mu
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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Ken - Interview 15
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Physiotherapy on his feet helps, so he's disappointed it's not provided locally. The physios have shown his wife what to do but she already has too mu
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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Carers
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Roger - Interview 41
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They had trouble getting community physiotherapy arranged to help clear Teresa's chest. A hospital physio showed him what to do, but he needed more su
Roger was married to Teresa, who was diagnosed with bulbar onset MND. She died a year ago, aged 64, less than six months after the diagnosis.
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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There was not enough NHS physiotherapy, so he did exercises with his daughter three times a day to loosen her muscles. Staff do not always know enough
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.
Nerves & brain
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Pauline - Interview 30
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Her neurophysiotherapist recommended toe stretches to stop her toes curling over. A chiropodist friend told her pads under her toes would help.
Pauline was diagnosed with PMA (progressive muscular atrophy) about 2 years ago (2005), after several years of leg weakness. She cannot walk far and uses a wheelchair, but is still able to work full-time.
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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A physiotherapist suggested exercises he couldn't physically manage. He felt she did not know enough about MND.
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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Bulbar onset
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Sue - Interview 31
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She has several tips to help with eating and swallowing. [Voice software interview].
Sue was diagnosed with bulbar onset motor neurone disease less than a year ago (2006). She is now unable to speak and uses a laptop with voice software. Her arms and legs are still relatively strong.
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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Stuart - Interview 05
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He advises people to 'make MND live with you, not the other way round'. He describes simple breathing exercises to use during the day.
Stuart first noticed symptoms (legs shaking) almost 20 years ago. MND diagnosed 9 years ago (1997), after years of tests and investigations. Now uses a wheelchair.
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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He tries to keep active. Singing in music therapy helps his breathing. He had breathing problems when he became ill and has learnt that staying fit is
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 65+
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Cordelia - Interview 13
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She has lost stamina and now gets very tired. After a lot of activity she tends to get muscle pain.
Cordelia was diagnosed a year ago (2005) with MND after investigations for other conditions including spinal muscular atrophy. She now has considerable muscle weakness.
Nerves & brain
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Motor Neurone Disease
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Carers
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Roger - Interview 41
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The hospital and community services did not always communicate well. He spent a lot of time acting as a 'medical secretary', ringing round and trying
Roger was married to Teresa, who was diagnosed with bulbar onset MND. She died a year ago, aged 64, less than six months after the diagnosis.
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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Peter - Interview 38
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He feels staff should offer newly diagnosed people positive suggestions for what they can do to keep active, and let them know what research is going
Peter was diagnosed three years ago (2004). Symptoms started in his arms and hands, and progressed to his legs. He now uses a wheelchair full-time.
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