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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
Clip
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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Her husband couldn't cope and left. She thought no-one could find her attractive but she met someone who made her feel beautiful and happy again. [Voi
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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Stuart - Interview 05
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He has taken up writing, art, local history and running a community website. He's writing his life story for his grandchildren.
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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Rarer forms - PMA (progressive muscular atrophy)
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Jim - Interview 18
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He could continue teaching while only his legs were affected. His employers were very supportive and Access to Work helped with equipment and travel.
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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Rarer forms - PMA (progressive muscular atrophy)
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Judith - Interview 12
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She took a creative writing course because her arms weren't strong enough to do art or pottery, but now she really loves writing.
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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Carers
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Jenny - Interview 01
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Her father was frightened and frustrated that he couldn't communicate. He could not use a keyboard. Talking to someone with no speech takes time and s
Jenny is the daughter of a man who was diagnosed in 2001 with motor neurone disease at the age of 81, and who died 4 months later. He was ill for a year before diagnosis.
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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Writing and typing were not easy for Teresa. Her husband adapted her Lightwriter so the keyboard was alphabetical, and programmed in key phrases. They
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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Bulbar onset
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Mike - Interview 23
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He has a Lightwriter but prefers white boards. He uses texting and the internet. His sons ring up and tell him what they've been doing. [Mike is unabl
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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Carers
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Bev - Interview 47
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She felt most communication aids were not suitable for her elderly mother. The speech therapist at the hospice was dismissive of the picture board she
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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Rarer forms - familial/inherited
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Ken - Interview 34
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He gave the speech at his daughter's wedding using a laptop computer and a projector. [Ken is unable to speak].
Ken was diagnosed with rare inherited (familial) form of MND less than a year ago (2006). He has limited arm and leg movement, has a PEG and uses a Lightwriter to speak, but carried on working until a month ago. Interviewed through his wife Chris.
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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The MND Association provided a voice amplifier and a Lightwriter so he could talk to his mother who is deaf. He jokes about the sound of the Lightwrit
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
>>
Motor Neurone Disease
>>
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
>>
Motor Neurone Disease
>>
Bulbar onset
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Sue - Interview 31
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She misses being able to talk, laugh and shout, but she loves her voice software and the freedom it gives her to express herself. [Voice software inte
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
>>
Motor Neurone Disease
>>
Bulbar onset
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Sue - Interview 31
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More needs to be done to raise awareness of the needs of speech-impaired people, and ways need to be found to use voice software on the telephone. [Vo
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
>>
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.
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