home
a-z of conditions
forums
news
about us
See all conditions
Nerves & brain
Motor Neurone Disease
Forum
Resources & Information
Subject index
Credits
Full list of topics
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
Search the whole site
Search in this condition
Motor Neurone Disease
Subject index
Clip
Nerves & brain
>>
Motor Neurone Disease
>>
Carers
>>
Roger - Interview 41
>>
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
>>
Motor Neurone Disease
>>
Bulbar onset
>>
Mike - Interview 23
>>
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
>>
Motor Neurone Disease
>>
ALS- amyotrophic lateral sclerosis/MND aged 65+
>>
Sylvia - Interview 25
>>
The speech therapist showed her a useful tip for swallowing tablets.
Sylvia was diagnosed a year ago in 2005, after noticing difficulties walking. She can move around at home with a trolley, and uses a wheelchair or scooter outdoors. She uses non-invasive ventilation regularly.
Nerves & brain
>>
Motor Neurone Disease
>>
Carers
>>
Bev - Interview 47
>>
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
>>
Motor Neurone Disease
>>
Rarer forms - familial/inherited
>>
Ken - Interview 34
>>
He finds his 'Say-it! SAM' device quicker than a Lightwriter and more fun. Other people don't get so impatient waiting for him to say something. [Ken
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
>>
Motor Neurone Disease
>>
Bulbar onset
>>
Sarah - Interview 21
>>
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.
Mail to a friend