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
>>
Rarer forms - familial/inherited
>>
Liz - Interview 22
>>
One occupational therapist told her she could not have a ramp and she'd have to move. A different OT took over and managed to sort it out.
Liz was diagnosed with rare inherited (familial) form of MND 8 years ago (1998). Sixth member of her family to be diagnosed. Has weakness in her arms and legs, and some speech difficulties. Has a PEG but does not use it yet.
Nerves & brain
>>
Motor Neurone Disease
>>
ALS- amyotrophic lateral sclerosis/MND aged 50-64
>>
Phil - Interview 28
>>
His OT is good at forecasting what equipment he'll need before he realises it. It's reassuring to know she can provide solutions as things progress.
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
>>
Motor Neurone Disease
>>
ALS- amyotrophic lateral sclerosis/MND aged 20-49
>>
Kim - Interview 10
>>
As an OT herself, she knows it's important to request equipment in advance. Her community OT has taken a lead in advising her on adapting the house.
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
>>
Motor Neurone Disease
>>
Rarer forms - familial/inherited
>>
Liz - Interview 39
>>
The occupational therapists have been key people in her care. They help her plan what equipment she's going to need and adjust emotionally.
Liz was diagnosed with inherited form of MND in 2004. (Her father and uncle both had MND). Weakness in her legs progressed to her arms; she is now in a wheelchair. Her speech is unaffected.
Nerves & brain
>>
Motor Neurone Disease
>>
Rarer forms - PMA (progressive muscular atrophy)
>>
Jim - Interview 18
>>
Planning equipment and adaptations in advance was a way of fighting back. With hindsight it might have been better to implement all the plans early on
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
>>
Rarer forms - PMA (progressive muscular atrophy)
>>
Pauline - Interview 30
>>
Equipment is sometimes poor quality - she was given a shower seat which went rusty within days. She likes the trolley she uses in the kitchen and a se
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
>>
Motor Neurone Disease
>>
ALS- amyotrophic lateral sclerosis/MND aged 65+
>>
Derek - Interview 27
>>
He was brought a lot of equipment he hadn't asked for and didn't want. Most of it is in the shed.
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
>>
Motor Neurone Disease
>>
Carers
>>
Bev - Interview 47
>>
They waited weeks for some equipment and assessments, but a bath seat arrived which they didn't want. It was hard to find out about aids and car adapt
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 - PMA (progressive muscular atrophy)
>>
Judith - Interview 12
>>
Her husband has improvised solutions which are cheaper and more convenient than the official recommendations. Her OT is helpful and takes away any equ
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
>>
Motor Neurone Disease
>>
Rarer forms - PMA (progressive muscular atrophy)
>>
Jim - Interview 18
>>
He found wheelchair services unhelpful and inflexible, so he did some research and bought his own wheelchair. But the OTs offer good, helpful advice.
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
>>
Rarer forms - familial/inherited
>>
Ken - Interview 34
>>
Their staircase was too awkward for a stairlift so they moved the bedroom downstairs and had a new bathroom. It was a long and costly process, but the
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.
Mail to a friend