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Nerves & brain
Motor Neurone Disease
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Work and career
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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
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Impact on family carers
Feelings about life and the future :
Philosophy, attitude to life and messages to others
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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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Bulbar onset
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Sue - Interview 31
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She went to a fit-ball class to help with aching in her neck and arms, and afterwards found she could not speak properly. [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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Rarer forms - PMA (progressive muscular atrophy)
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Judith - Interview 12
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She saw two neurologists before being diagnosed with PMA. She had a range of tests and treatment with intravenous immunoglobulin, which made no differ
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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Rarer forms - PLS (primary lateral sclerosis)
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'Speedy' - Interview 19
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For months she had no idea it might be MND. In a way 'blissful ignorance' was good, but she wishes someone had told her to make the most of life while
'Speedy' was diagnosed with primary lateral sclerosis (PLS) nearly 2 years ago (in 2005) after 2 years of increasing leg weakness. She now uses a wheelchair and a hand-operated car.
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 - PLS (primary lateral sclerosis)
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Peter - Interview 20
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Peter goes to the gym to maintain upper body strength - he feels lucky he can afford it. He'd like to be able to do more exercising in water. [Peter c
Peter was diagnosed with primary lateral sclerosis (PLS) 8 years ago (1998). Symptoms progressed quickly at first, but now more slowly. His speech was severely affected, so he was interviewed through his wife Ann. His mobility is also affected.
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 20-49
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Michael - Interview 29
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He noticed his right arm was weaker than his left arm when lifting weights one day. Gradually he found it hard to lift his arm. His GP thought it migh
Michael was diagnosed less than a year ago in 2006 after noticing weakness in his right arm. His arm weakness remains his main symptom, and it has got worse. Currently he is on sick leave from work.
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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One day when out running she noticed she couldn't control her left leg. She began tripping over a lot, but put it down to clumsiness.
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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He first thought something was wrong when he noticed muscle twitching when playing golf. One time he missed the ball and fell over.
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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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
>>
Motor Neurone Disease
>>
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
>>
Motor Neurone Disease
>>
Rarer forms - PMA (progressive muscular atrophy)
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Pauline - Interview 30
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When she's tired she feels the best way to deal with it is to just ignore it and keep going, but it's frustrating not being able to do some things any
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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Carers
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Peter & Olivia - Interview 46
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Swimming helped a lot in the early stages. It was tiring, but being able to move in the water lifted her spirits.
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.
Topic
Nerves & brain
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Motor Neurone Disease
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Physical therapy and exercise
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Physical therapy and exercise
Physical therapy and exercise
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