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• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Ken - Interview 34 >> They sit round the table together for meals and Ken does his PEG feed. At Christmas he stuck jokey labels on the bottles. [Ken is unable to speak].

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 >> Bulbar onset >> Mike - Interview 23 >> They want to be as independent as possible. Mike has a portable pump for his PEG so they can take it with them to restaurants to eat with friends. [Mi

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 >> 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 - 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 >> Peter - Interview 38 >> 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 >> 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 >> 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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Kim - Interview 10 >> Not even the experts know why people get MND. She knows there's no point worrying if she did something to cause it, but sometimes she can't help it.

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 >> Phil - Interview 28 >> He wonders if giving up smoking after 50 years had anything to do with getting MND but his consultant reassures him it's nothing he's done.

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 >> He wants to continue working - it makes him feel useful and he enjoys interacting with other people.

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 >> Bulbar onset >> Sue - Interview 31 >> Searching for a cause helps people cope with MND, but it can become an obsession. She would like to see more research into the effects of crop-sprayin

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Peter - Interview 38 >> More funding and more research are needed for MND. He believes all new patients should be routinely asked questions about their lifestyle, to help ide

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 >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Roland - Interview 17 >> If you explain your mobility problems and ask people for help they are usually very kind and sympathetic.

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 >> 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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Kim - Interview 10 >> Having strangers washing and dressing you is difficult, but she felt it was better for her marriage and her family to have carers coming in.

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 >> Having paid carers is fantastic because she doesn't feel guilty asking them to do things for her. The only downside has been the lack of continuity of

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 >> Bulbar onset >> Sarah - Interview 21 >> Organising care was hard at first but now she has a great team of dedicated people. With their support she can still live at home with her children. [

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Marcelin - Interview 37 >> Straight after diagnosis he did not want information about MND, but then he decided to find out as much as he could to help him fight it.

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 >> 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) >> Jim - Interview 18 >> He prefers to be told if his symptoms have progressed, even if it's upsetting. Staff have a difficult judgement to make about what different people wa

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 65+ >> Sylvia - Interview 25 >> She wants honest information, but it's good to be given some hope and encouragement, not just negative information - no one knows what will happen.

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Jim - Interview 18 >> The information sources he's used include the internet, books, the MND Association and BUILD. Other people with MND can sometimes tell you more than 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 >> 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 >> Rarer forms - PMA (progressive muscular atrophy) >> Roland - Interview 17 >> He advises everyone to contact the MND Association and take up the help and advice available from local branches.

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 50-64 >> Phil - Interview 28 >> Going to support group meetings has helped him come to terms with MND. The emotional support and practical information have helped him and his wife.

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) >> Jim - Interview 18 >> He was frightened about seeing people whose symptoms had progressed more than his, but in fact it encouraged him to feel he could cope.

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 >> She went to a support group meeting, but felt it was more aimed at carers. Exchanging practical tips is valuable, but she doesn't want to see people w

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) >> Jim - Interview 18 >> He could continue teaching while only his legs were affected. His employers were very supportive and Access to Work helped with equipment and travel.

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 >> Ken - Interview 15 >> He gave up work almost immediately. He enjoyed teaching but the job had changed, so he was glad to retire early and spend time with his wife.

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 >> Carers >> Dick - Interview 42 >> The generosity and selflessness of friends who helped him care for his wife has made him see the world differently.

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 >> Carers >> Ann & Barry - Interview 48 >> She has been depressed about the loss of their future as a couple. She takes an antidepressant, but has also learnt to accept the things she can't cha

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 >> Carers >> Una & Bill - Interview 49 >> Becoming a carer has crept up on her. Each step feels like a mini-bereavement but it's amazing what she has got used to. A practical focus helps.

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 >> Carers >> Tess - Interview 44 >> Sometimes she tends to look on the dark side, but her partner's positive attitude rubs off on her.

Tess met her partner, who had already been diagnosed with MND, when volunteering at a sailing club for disabled people. She now lives with him and is his main carer. (See Marcelin, MND37)

• Nerves & brain >> Motor Neurone Disease >> Carers >> Roger & Luise - Interview 45 >> Roger found strength from somewhere. It was wonderful to see his sons involved in caring for their mother. Parishioners from her church rallied round.

Roger's wife Luise was diagnosed in 2004 aged 59, after a year of weakness in her fingers and leg. Roger and his sons cared for Luise at home until her death in 2006.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Michael - Interview 29 >> He spent too long under a cloud when first diagnosed, and still feels bitter and frustrated at times. He advises others to make the most of life, and

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+ >> Shyam - Interview 35 >> Drawing on Hinduism and Buddhism, he accepts MND as a guest in his body. They have to live together in peace and he feels he should not worry or panic

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 65+ >> Audrey - Interview 02 >> As she's 70 she's more interested in quality of life than quantity, but she would probably think differently if she were young.

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 >> Bulbar onset >> Mike - Interview 23 >> They try to live a normal life. It helps to plan ahead, but you have to deal with challenges as they arise. Sometimes they feel vulnerable when severa

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Jim - Interview 18 >> He tries to find a balance between planning ahead but not thinking about it all the time. Each day he plans something enjoyable and something practica

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) >> Paul - Interview 09 >> His advice is to keep life as normal as possible and think positive. At the same time you need to anticipate what you may need in future.

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 >> Rarer forms - PLS (primary lateral sclerosis) >> Hal - Interview 26 >> He tends to put MND to the back of his mind and lives life how he wants. He uses the motto 'make every day count'.

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 50-64 >> Sandy - Interview 36 >> He tries to make the best of a 'bad hand' of cards. He advises others to inform themselves and ask for help, but not to give up.

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 - familial/inherited >> Liz - Interview 39 >> She still enjoys her food and eating out, even though she thought she'd be embarrassed about being helped to eat in public.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Stuart - Interview 05 >> He advises people to 'make MND live with you, not the other way round'. He describes simple breathing exercises to use during the day.

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 50-64 >> Marcelin - Interview 37 >> He tries to keep active. Singing in music therapy helps his breathing. He had breathing problems when he became ill and has learnt that staying fit is

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Peter - Interview 38 >> Sometimes he worries he has problems breathing or swallowing, but thinks it's really his imagination. It helps not to think too far ahead.

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 >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> She got into a 'vicious circle' of anxiety, hyperventilating and imagining she couldn't swallow. She has to tell herself to stop thinking that way and

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) >> Judith - Interview 12 >> She tries to plan only one thing a day. She advises people to take their time and to rest between activities during the day.

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 - PLS (primary lateral sclerosis) >> Hal - Interview 26 >> He thinks it's important to fight MND and make every day count. But sometimes tiredness hits you like a brick wall and then you need to stop and rest.

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) >> Pauline - Interview 30 >> 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 >> Motor Neurone Disease >> Carers >> Roger & Luise - Interview 45 >> His wife got very tired but found it difficult to get comfortable in bed. Using different mattresses and cushions made little difference.

Roger's wife Luise was diagnosed in 2004 aged 59, after a year of weakness in her fingers and leg. Roger and his sons cared for Luise at home until her death in 2006.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Liz - Interview 39 >> Pressure on her heels was uncomfortable at night, but a ROHO cushioned insert helped a lot. Getting a good night's sleep helps her cope better in the

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 >> Bulbar onset >> Vim - Interview 32 >> He likes to get into the sunshine and plans holidays every few months.

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 >> Little things can still trigger great sadness, especially thinking about his grandchildren, but it was worse at the beginning. Learning to accept it h

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 >> Michael - Interview 29 >> A year after diagnosis, some days he feels fine, but other days something frustrating can happen and he struggles more with his emotions.

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 20-49 >> Michael - Interview 29 >> Limited arm movement is his main practical problem. He has worked out ways to compensate, for example to lift a glass or pull up the duvet.

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 >> Peter - Interview 38 >> He fell on the stairs and within a year could no longer walk. His hand is too weak to operate a scooter. He tried to keep mobile and resist using equi

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 >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> She and her daughters laugh about it when she falls over. Life is too short to get upset about it.

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 >> Penny - Interview 11 >> Using an electric scooter out of doors was hard to accept but it gives her more freedom. At home she still walks. In the kitchen she's found a kettle

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 50-64 >> Marcelin - Interview 37 >> He has been impressed with the quality of the support network locally. He feels completely taken care of and that gives him confidence.

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 - PMA (progressive muscular atrophy) >> Roland - Interview 17 >> He is very pleased with the coordinated service provided by his nearest specialist MND centre. He feels he can email the neurologist in between visits

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 >> Carers >> Una & Bill - Interview 49 >> Their MND Association Regional Care Development Adviser and their GP have been excellent in coordinating services.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Sylvia - Interview 25 >> She suggests professionals need to give people 'good facts as well as bad facts', because people need hope that the condition may progress slowly.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Peter - Interview 38 >> He feels staff should offer newly diagnosed people positive suggestions for what they can do to keep active, and let them know what research is going

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 >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Liz - Interview 22 >> She advises people to 'live each day'. Professionals need to assess everyone as an individual and not assume the same solutions will do for everyone w

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 >> Rarer forms - familial/inherited >> Liz - Interview 22 >> She is determined to keep going for her children's sake, but she has been depressed in the past. Taking an antidepressant helped control both depressi

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 20-49 >> Michael - Interview 29 >> They are still able to have a normal sex life. Bearing weight on his arms is difficult, but they find ways round it.

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 >> Marcelin never thought he'd have another relationship, but it means a lot to him that Tess wants to be with him and values him as he is now.

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 >> Tess - Interview 44 >> When Tess first met Marcelin she was worried about getting too close and afraid of losing him. Now she sometimes forgets he has MND.

Tess met her partner, who had already been diagnosed with MND, when volunteering at a sailing club for disabled people. She now lives with him and is his main carer. (See Marcelin, MND37)

• Nerves & brain >> Motor Neurone Disease >> Bulbar onset >> Sarah - Interview 21 >> Her husband couldn't cope and left. She thought no-one could find her attractive but she met someone who made her feel beautiful and happy again. [Voi

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 >> She started an online relationship with a man with PLS. But since she's been using a wheelchair he's stopped writing. She thinks he's in denial about

'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 50-64 >> Phil - Interview 28 >> He and his wife have had a packed summer. She takes him fishing in his wheelchair, and helps him make toys for their grandsons in his workshop. It's i

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 65+ >> Audrey - Interview 02 >> She's happy entertaining herself at home and seeing friends, but is sad she can't do the gardening any more.

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 >> Stuart - Interview 05 >> He has taken up writing, art, local history and running a community website. He's writing his life story for his grandchildren.

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 - PLS (primary lateral sclerosis) >> 'Speedy' - Interview 19 >> She has taken up piano, knitting and embroidery. They're not things she'd ever have wanted to do before, but at least they keep her occupied.

'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 50-64 >> Stuart - Interview 05 >> He misses going out in the countryside, but now sitting by his window he enjoys seeing things through different eyes.

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 >> Bulbar onset >> Ann - Interview 24 >> She was depressed after the diagnosis. Her family took her on two holidays before her PEG operation and it was a very healing experience.

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 >> She advises other carers to try not to be obsessed with the condition, and to enjoy each day as much as possible. Learning bridge gave her a chance to

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 65+ >> Sylvia - Interview 25 >> She has been lucky to have a good life and happy family, so she doesn't think 'why me?' A vicar asked her if she was angry with God but she feels it's

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 >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Cordelia - Interview 13 >> At 76, she can look back at a wonderful life, and she feels lucky she has no pain. She thinks acceptance is better than denial.

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 doesn't dwell on the condition but it's an opportunity to sort his financial affairs and plan legacies for his grandchildren. He reflects back posi

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 65+ >> Derek - Interview 27 >> No one can predict how the condition will affect you, so never give up hope.

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> She feels religion has little to offer. She relies on her own fighting spirit, but thinks you're either born with that kind of personality or you're n

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 - familial/inherited >> Liz - Interview 22 >> She wants to spend every minute she has left living, not worrying. Her children and a sense of humour keep her going. Only when the system breaks down

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 >> Bulbar onset >> Vim - Interview 32 >> He advises people to stay positive and get in touch with any organisation which can offer help and support.

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 >> Once you've accepted you have the condition you can start to get support in place and look forward to the future.

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 >> Bulbar onset >> Mike - Interview 23 >> At the moment they don't even want to discuss a Living Will. They're just trying to manage and carry on living normally. [Mike is unable to speak].

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Judith - Interview 12 >> She feels very positive about life and is upset by media images of MND. In future she may make a Living Will. She would not want resuscitation and wou

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 >> Una & Bill - Interview 49 >> Compared to other illness it's a relief to have some certainty and not be on a roller coaster of hope and disappointment. There's no pain and no aggre

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 >> Liz - Interview 22 >> She made a joke about dying and her friend was so upset she didn't contact her for three weeks.

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.