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
>>
ALS- amyotrophic lateral sclerosis/MND aged 50-64
>>
Slawomir - Interview 33
>>
His mother shouted at him when he told her he might have MND.
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
>>
Motor Neurone Disease
>>
ALS- amyotrophic lateral sclerosis/MND aged 50-64
>>
Penny - Interview 11
>>
Most people were very supportive but her mother was angry at the diagnosis, and one of her friends also found it hard to accept.
Penny was diagnosed three years ago (2003) with ALS, after having arm weakness, pains and coughing fits for three years. The condition has progressed quite slowly so far.
Nerves & brain
>>
Motor Neurone Disease
>>
Rarer forms - PMA (progressive muscular atrophy)
>>
Jim - Interview 18
>>
It was upsetting having to explain the diagnosis to lots of different people and make them understand how serious it was, but he couldn't move forward
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
>>
Motor Neurone Disease
>>
Carers
>>
Peter & Olivia - Interview 46
>>
They set up an email group to tell people and keep them informed. It gave them great emotional support and showed them the true meaning of friendship.
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
>>
Motor Neurone Disease
>>
Rarer forms - familial/inherited
>>
Ken - Interview 34
>>
They put a note in their Christmas cards explaining Ken's diagnosis. Most friends have been supportive, but some are unsure whether to come and visit.
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
>>
ALS- amyotrophic lateral sclerosis/MND aged 65+
>>
Sylvia - Interview 25
>>
She told friends she was ill in her Christmas cards, because she thought they'd feel awful if she died and they hadn't known.
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
>>
Bulbar onset
>>
Ann - Interview 24
>>
Some people have been supportive, others have stopped phoning altogether. She has not yet thought how to tell her old school friend.
Ann was diagnosed with bulbar onset MND within the last 6 months (in 2006), after speech and swallowing difficulties. She is about to have a Percutaneous Endoscopic Gastrostomy (PEG).
Nerves & brain
>>
Motor Neurone Disease
>>
Carers
>>
Bev - Interview 47
>>
After her mother was diagnosed she took her on holiday with one of her mother's friends. She was shocked that the friend was unsympathetic because of
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
>>
ALS- amyotrophic lateral sclerosis/MND aged 50-64
>>
Phil - Interview 28
>>
He felt very vulnerable telling his employers but they were fantastic. He liked it when people treated him as if it was 'business as usual'.
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.
Mail to a friend