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• Nerves & brain >> Motor Neurone Disease >> First symptoms >> First symptoms

First symptoms

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• Nerves & brain >> Motor Neurone Disease >> Bulbar onset >> Mike - Interview 23 >> He was aware his speech was becoming slurred before anyone else noticed, until one day at work someone assumed he must be drunk. [Mike is unable to sp

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 >> Carers >> Roger - Interview 41 >> When his wife started to slur her speech people thought she'd had too much to drink. He noticed she was becoming frustrated and agitated.

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 >> Sue - Interview 31 >> 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 >> Motor Neurone Disease >> Carers >> Una & Bill - Interview 49 >> Her husband went to the GP about a slight cough when he was eating. Within a few months he was walking slowly and seemed constantly tired. He develope

Una's husband Bill first noticed symptoms at the end of 2005 and was diagnosed aged 63. A ventilator greatly improved his energy levels for nearly a year. He had a PEG fitted but does not yet use it for feeding.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Ken - Interview 34 >> He had coughing fits which became so bad he started to eat lunch alone in case it made him choke. They did not realise MND could be hereditary. [Ken i

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Jim - Interview 18 >> At first his GP reassured him it was nothing to worry about, but referred him to a neurologist. Within four months of referral he had a diagnosis of P

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Phil - Interview 28 >> The first GP he saw assumed his symptoms were smoking-related. After a fall he was referred to a neurologist who diagnosed MND after eliminating other

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Judith - Interview 12 >> 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 >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> She had lengthy investigations and an operation for a spinal cyst which made no difference. Eventually she was told she had MND.

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 >> Bulbar onset >> Sarah - Interview 21 >> She developed symptoms in pregnancy. She believes the neurologist knew at once what was wrong but didn't tell her. She would have preferred to know. [

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 >> Rarer forms - PLS (primary lateral sclerosis) >> 'Speedy' - Interview 19 >> 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 >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Liz - Interview 22 >> MND runs in her family so she was referred quickly when she developed symptoms. She didn't want to believe it at first, but was glad to be diagnosed e

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 65+ >> Audrey - Interview 02 >> The first thing she noticed was difficulty pegging clothes on the line.

Audrey first noticed symptoms 11-12 years ago. Diagnosis confirmed three years later (1995). Still living at home with support from a daily carer and respite care in a hospice.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Penny - Interview 11 >> At work she began finding it hard to lift heavy files onto a shelf. Her hands used to shake, and she developed coughing fits.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Martin - Interview 40 >> He found he was struggling to do up shoelaces and his hands started shaking when holding a drill at work.

Martin was diagnosed about a year ago in 2006, after a year of weakness in his fingers and hands. Movement in his arms is now very limited, but his legs and speech are not affected.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Ken - Interview 15 >> His arm felt stiff when he woke every morning, and he noticed fasciculations and cramps. His hand became weaker and he found it hard to operate his ca

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.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Michael - Interview 29 >> 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 >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Sylvia - Interview 25 >> When she first noticed something was wrong it felt as if she had 'forgotten how to walk'.

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 >> Mary - Interview 04 >> Her husband thought the aching in his legs was because he wasn't used to doing physical work. She noticed changes in his memory and emotional reaction

Mary is the wife of man diagnosed with MND a year before interview (2003). (Couple also interviewed together - see Jack's story MND03).

• Nerves & brain >> Motor Neurone Disease >> Carers >> Jenny - Interview 01 >> Looking back her father had several symptoms before they noticed something was wrong. It was hard to tell what was unusual and what was old age.

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 >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> 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 >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Derek - Interview 27 >> 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 >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Maryse - Interview 06 >> She took up flying lessons but had to give up when she noticed her leg was becoming floppy.

Maryse was diagnosed March 2005. She was told she had 2-3 years to live. Within months she could no longer live independently and moved into a nursing home. Her speech deteriorated rapidly.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PLS (primary lateral sclerosis) >> 'Speedy' - Interview 19 >> She had foot drop and aching leg muscles at first. Later, she began having balance problems and noticed rapid muscle contractions, especially when dri

'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 >> Motor Neurone Disease >> First symptoms >> First symptoms

First symptoms

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• Nerves & brain >> Motor Neurone Disease >> Motor Neurone Disease

Publication date: 31st March 2008  

Updated: July 2010  Review date: In progress

 

Motor Neurone Disease (MND) is a disease that attacks the upper and lower motor neurones leading to weakness and wasting of muscles, increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. We interviewed 35 people with MND and 11 carers about their experiences of this condition. Select from the key topics below, choose from the full list of topics, or explore all the interviews.