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• 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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Slawomir - Interview 33 >> He had problems getting referred to neurology and had long waits between appointments. In the end he saw a neurologist privately and had a private MRI

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 >> 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 >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> She would prefer doctors to explain that MND is one of the things they are looking for and that the diagnostic process for can be long and uncertain.

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 >> 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 >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Cordelia - Interview 13 >> She went to a conference on spinal muscular atrophy, thinking this was her diagnosis. A neurologist told her she was at the wrong conference. He later

Cordelia was diagnosed a year ago (2005) with MND after investigations for other conditions including spinal muscular atrophy. She now has considerable muscle weakness.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PLS (primary lateral sclerosis) >> Peter - Interview 20 >> At first they were told his symptoms did not fit the diagnostic criteria for MND. They were happy to leave it at that. Later PLS was diagnosed. [Peter

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 >> Motor Neurone Disease >> Carers >> Peter & Olivia - Interview 46 >> Peter's daughter's diagnosis remained uncertain for some time, because she was so young and did not fit the normal criteria for MND. This made it hard

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 >> Carers >> Peter & Olivia - Interview 46 >> They tried Chinese herbal remedies and acupuncture partly to rule out any other problems. It seemed to help her energy levels, but in the end her symp

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 - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> 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 >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Phil - Interview 28 >> There was a delay between the diagnosis and seeing an MND specialist. All he could think about was being terminally ill. The specialist helped him loo

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 50-64 >> Marcelin - Interview 37 >> When he finally got a diagnosis after 7 years, he felt hopeless and that there was no point going on. It took a long time to accept it and find a way

Marcelin was diagnosed over three years ago (in 2003), after several years of weakness in his arms, and later his legs. He now uses a wheelchair. His speech is unaffected. He continues to work full-time. (Partner Tess also interviewed, MND44).

• Nerves & brain >> Motor Neurone Disease >> Carers >> Peter & Olivia - Interview 46 >> They tried Chinese herbal remedies and acupuncture partly to rule out any other problems. It seemed to help her energy levels, but in the end her symp

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 >> Bulbar onset >> Vim - Interview 32 >> He couldn't take in how serious the diagnosis was. He had to ring the doctor to ask what he'd been told. He cried for six months, but then began feeli

Vim was diagnosed just over a year ago in 2006 with bulbar onset MND. His speech is affected but he can still talk, and he can still walk independently. He has retired early.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Jenny - Interview 01 >> She thinks her father was in denial about the diagnosis until he lost his speech. He said they must have got it wrong.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Derek - Interview 27 >> He does not want to read about life expectancy. He deals with MND by making believe it's not happening.

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 50-64 >> Stuart - Interview 05 >> He was so relieved at finally getting a diagnosis that he laughed. He was told he would not live long but was determined to prove everyone wrong.

Stuart first noticed symptoms (legs shaking) almost 20 years ago. MND diagnosed 9 years ago (1997), after years of tests and investigations. Now uses a wheelchair.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Kim - Interview 10 >> She suspected it was MND and wanted the doctor to tell her straight. For a few days she couldn't bear to be alone.

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 - PMA (progressive muscular atrophy) >> Judith - Interview 12 >> She was prepared for the diagnosis and the professor was kind and reassuring. She told her every patient is different and not to worry about all the d

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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Michael - Interview 29 >> There is no nice way to tell people they have MND - it will always be 'a hammer blow', however sensitively it is done.

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 >> Carers >> Bev - Interview 47 >> Being present at her mother's diagnosis was devastating. For the next week she felt as if they were on a desert island. She couldn't face the world.

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 >> Sandy - Interview 36 >> The consultant neurologist told him to go home and put his affairs in order. It seemed blunt but he prefers a direct approach.

Sandy was diagnosed 5 years ago (2002) after noticing weakness in one arm. His arms have been worst affected, and now his speech and neck muscles are deteriorating, but he can still walk well.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Jim - Interview 18 >> He was told he might live 3 years. His wife was across the room from him and was crying with shock. But at the next appointment they were told it was

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 - PLS (primary lateral sclerosis) >> Hal - Interview 26 >> Being told he had PLS gave him extra strength to fight it.

Hal was diagnosed with MND nearly three years ago in 2004. Diagnosis revised to primary lateral sclerosis (PLS) a year ago. His speech is affected, but mobility is still good.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Ann & Barry - Interview 48 >> Everything turned on their belief that Barry did not have long to live, not knowing he had PLS. Looking back Ann feels they lost out on many things.

Ann's husband Barry was diagnosed with MND about 10 years ago (1997) at the age of 49, after two years of symptoms and tests. (Since identified as primary lateral sclerosis - PLS).

• 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 >> Carers >> Peter & Olivia - Interview 46 >> Peter's daughter's diagnosis remained uncertain for some time, because she was so young and did not fit the normal criteria for MND. This made it hard

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 >> Carers >> Dick - Interview 42 >> They knew it might be MND before it was confirmed, so they had time to plan how to deal with it. Di's reaction was calm and practical.

Dick was married to Di, who was diagnosed with MND two and a half years ago (2004). She died 6 months ago, aged 64.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Michael - Interview 29 >> He knew it would be bad news when they asked his wife to be present. He felt his world had collapsed and there was no hope.

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+ >> Cordelia - Interview 13 >> She went to a conference on spinal muscular atrophy, thinking this was her diagnosis. A neurologist told her she was at the wrong conference. He later

Cordelia was diagnosed a year ago (2005) with MND after investigations for other conditions including spinal muscular atrophy. She now has considerable muscle weakness.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PLS (primary lateral sclerosis) >> Peter - Interview 20 >> At first they were told his symptoms did not fit the diagnostic criteria for MND. They were happy to leave it at that. Later PLS was diagnosed. [Peter

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 >> Motor Neurone Disease >> Carers >> Mary - Interview 04 >> One doctor told her husband it might not be MND, so they went home and celebrated with champagne. She was devastated when they were told it was MND af

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 >> 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 - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> She would prefer doctors to explain that MND is one of the things they are looking for and that the diagnostic process for can be long and uncertain.

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 >> 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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Jack - Interview 03 >> He had such a bad reaction to the lumbar puncture that his wife called an ambulance. It would have helped to be told more about what to expect.

Jack was diagnosed with MND a year before interview (2003), after some years of leg pain and stiffness. Symptoms have progressed slowly, still mainly leg weakness. He now uses a walking frame. (Wife Mary present, also interviewed separately MND04).

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Ken - Interview 15 >> He had various tests including a lumbar puncture. He was the only person in the ward not to develop a bad headache afterwards.

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 >> 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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Slawomir - Interview 33 >> He had problems getting referred to neurology and had long waits between appointments. In the end he saw a neurologist privately and had a private MRI

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 20-49 >> Kim - Interview 10 >> As an OT she suspected she might have MND. She describes the diagnostic tests, including an EMG, blood tests, an MRI scan and an x-ray of her spine.

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 - 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.

• Topic
• Nerves & brain >> Motor Neurone Disease >> Path to diagnosis >> Path to diagnosis

Path to diagnosis

• Nerves & brain >> Motor Neurone Disease >> Immediate reactions to diagnosis >> Immediate reactions to diagnosis

Immediate reactions to diagnosis

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> They went out to celebrate when she heard she had PMA.

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 50-64 >> Sandy - Interview 36 >> He told his son first as they were going to a football match after the appointment. He told his wife when he got home and his daughter and colleagues

Sandy was diagnosed 5 years ago (2002) after noticing weakness in one arm. His arms have been worst affected, and now his speech and neck muscles are deteriorating, but he can still walk well.

• 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 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 >> Bulbar onset >> Ann - Interview 24 >> After diagnosis she spent an hour in clinic being given information. It was too much at that stage and she doesn't want to think about the negative si

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Phil - Interview 28 >> At first you can't take in any information. It is a good idea to have another appointment within a week so you can think what you need to ask.

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 50-64 >> Ken - Interview 15 >> He is glad the doctor did not tell him straight away the worst that could happen. No-one can predict how you will be affected. At a second appointment

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 65+ >> Shyam - Interview 35 >> He does not want any information about MND and what other people feel. He wants to experience it for himself and wait to see what happens.

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 >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Roland - Interview 17 >> The consultant who diagnosed PMA 7 years ago gave him no further information and did not suggest he contact the MND Association. He would have liked t

Roland was diagnosed 7 years ago (1999) with Progressive Muscular Atrophy (PMA) form of MND. His hand muscles are affected but not his speech.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Michael - Interview 29 >> You need to know some things, but he feels too fragile to find out about progression and prognosis. Staff must inform people sensitively but there's n

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Paul - Interview 09 >> Access to professional journals on the internet helped him know what questions to discuss with specialists, but many internet sites are unreliable.

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 >> Motor Neurone Disease >> Bulbar onset >> Vim - Interview 32 >> He read all the MND Association information so he knew what he was facing, then put it aside. The information should be available at the hospital when

Vim was diagnosed just over a year ago in 2006 with bulbar onset MND. His speech is affected but he can still talk, and he can still walk independently. He has retired early.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PLS (primary lateral sclerosis) >> Hal - Interview 26 >> He told his family not to look at the MND Association website because he feels the information about life expectancy is too negative.

Hal was diagnosed with MND nearly three years ago in 2004. Diagnosis revised to primary lateral sclerosis (PLS) a year ago. His speech is affected, but mobility is still good.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Martin - Interview 40 >> He doesn't want to know much about the condition. He tries to block it out and think he hasn't got it.

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 >> Bulbar onset >> Ann - Interview 24 >> She wishes her daughter had not been invited to come with her, as the diagnosis was a great shock for her. Professionals need to tailor what they say

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).

• Condition
• 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.

• Nerves & brain >> Motor Neurone Disease >> Bulbar onset >> Ann - Interview 24 >> She wishes her daughter had not been invited to come with her, as the diagnosis was a great shock for her. Professionals need to tailor what they say

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Sandy - Interview 36 >> He told his son first as they were going to a football match after the appointment. He told his wife when he got home and his daughter and colleagues

Sandy was diagnosed 5 years ago (2002) after noticing weakness in one arm. His arms have been worst affected, and now his speech and neck muscles are deteriorating, but he can still walk well.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Martin - Interview 40 >> He doesn't want to know much about the condition. He tries to block it out and think he hasn't got it.

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 >> Jack - Interview 03 >> His grown-up children have all reacted differently. One son has been more emotional than he expected.

Jack was diagnosed with MND a year before interview (2003), after some years of leg pain and stiffness. Symptoms have progressed slowly, still mainly leg weakness. He now uses a walking frame. (Wife Mary present, also interviewed separately MND04).

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Michael - Interview 29 >> He wants his children (aged 11 and 9) to enjoy their childhood. They have not told them everything about the condition but they do not lie to them.

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 >> Rarer forms - PLS (primary lateral sclerosis) >> 'Speedy' - Interview 19 >> She didn't tell her son (now 13) the name of the condition at first but explained she might need a wheelchair soon. He didn't want to talk about it an

'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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Kim - Interview 10 >> She wanted to protect her children (now 12 and 10) from worrying about it but in the end told them she wouldn't get better. The hardest thing is seein

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 >> 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 >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> They went out to celebrate when she heard she had PMA.

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 20-49 >> Kim - Interview 10 >> As an OT she suspected she might have MND. She describes the diagnostic tests, including an EMG, blood tests, an MRI scan and an x-ray of her spine.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Michael - Interview 29 >> He knew it would be bad news when they asked his wife to be present. He felt his world had collapsed and there was no hope.

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 50-64 >> Marcelin - Interview 37 >> When he finally got a diagnosis after 7 years, he felt hopeless and that there was no point going on. It took a long time to accept it and find a way

Marcelin was diagnosed over three years ago (in 2003), after several years of weakness in his arms, and later his legs. He now uses a wheelchair. His speech is unaffected. He continues to work full-time. (Partner Tess also interviewed, MND44).

• 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 >> Carers >> Ann & Barry - Interview 48 >> Everything turned on their belief that Barry did not have long to live, not knowing he had PLS. Looking back Ann feels they lost out on many things.

Ann's husband Barry was diagnosed with MND about 10 years ago (1997) at the age of 49, after two years of symptoms and tests. (Since identified as primary lateral sclerosis - PLS).

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PLS (primary lateral sclerosis) >> Hal - Interview 26 >> Being told he had PLS gave him extra strength to fight it.

Hal was diagnosed with MND nearly three years ago in 2004. Diagnosis revised to primary lateral sclerosis (PLS) a year ago. His speech is affected, but mobility is still good.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Jim - Interview 18 >> He was told he might live 3 years. His wife was across the room from him and was crying with shock. But at the next appointment they were told it was

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 >> Sandy - Interview 36 >> The consultant neurologist told him to go home and put his affairs in order. It seemed blunt but he prefers a direct approach.

Sandy was diagnosed 5 years ago (2002) after noticing weakness in one arm. His arms have been worst affected, and now his speech and neck muscles are deteriorating, but he can still walk well.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Judith - Interview 12 >> She was prepared for the diagnosis and the professor was kind and reassuring. She told her every patient is different and not to worry about all the d

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 >> Carers >> Bev - Interview 47 >> Being present at her mother's diagnosis was devastating. For the next week she felt as if they were on a desert island. She couldn't face the world.

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 20-49 >> Kim - Interview 10 >> She suspected it was MND and wanted the doctor to tell her straight. For a few days she couldn't bear to be alone.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Kim - Interview 10 >> It was like going through a grieving process after diagnosis, especially when she thought about her children and the grandchildren she'd never see.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Shyam - Interview 35 >> He says he has never felt worried or upset by the diagnosis. What saddens him is feeling that he is a burden on his wife.

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 >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Stuart - Interview 05 >> He was so relieved at finally getting a diagnosis that he laughed. He was told he would not live long but was determined to prove everyone wrong.

Stuart first noticed symptoms (legs shaking) almost 20 years ago. MND diagnosed 9 years ago (1997), after years of tests and investigations. Now uses a wheelchair.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Paul - Interview 09 >> He was pretty sure what the diagnosis would be, so it didn't come as a 'nasty surprise' and he took it in his stride.

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 >> Motor Neurone Disease >> Carers >> Dick - Interview 42 >> They knew it might be MND before it was confirmed, so they had time to plan how to deal with it. Di's reaction was calm and practical.

Dick was married to Di, who was diagnosed with MND two and a half years ago (2004). She died 6 months ago, aged 64.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Derek - Interview 27 >> He does not want to read about life expectancy. He deals with MND by making believe it's not happening.

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 >> Jenny - Interview 01 >> She thinks her father was in denial about the diagnosis until he lost his speech. He said they must have got it wrong.

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 >> Bulbar onset >> Vim - Interview 32 >> He couldn't take in how serious the diagnosis was. He had to ring the doctor to ask what he'd been told. He cried for six months, but then began feeli

Vim was diagnosed just over a year ago in 2006 with bulbar onset MND. His speech is affected but he can still talk, and he can still walk independently. He has retired early.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Phil - Interview 28 >> There was a delay between the diagnosis and seeing an MND specialist. All he could think about was being terminally ill. The specialist helped him loo

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 >> Carers >> Mary - Interview 04 >> One doctor told her husband it might not be MND, so they went home and celebrated with champagne. She was devastated when they were told it was MND af

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 >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Cordelia - Interview 13 >> She went to a conference on spinal muscular atrophy, thinking this was her diagnosis. A neurologist told her she was at the wrong conference. He later

Cordelia was diagnosed a year ago (2005) with MND after investigations for other conditions including spinal muscular atrophy. She now has considerable muscle weakness.

• 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.