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• 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 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 >> Bulbar onset >> Sue - Interview 31 >> She uses cranial-sacral therapy, acupuncture, and aromatherapy. She takes tomato juice for excess saliva, and echinacea and Bach Flower Remedies. [Voi

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 >> 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 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 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 >> 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 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 >> Liz - Interview 39 >> The occupational therapists have been key people in her care. They help her plan what equipment she's going to need and adjust emotionally.

Liz was diagnosed with inherited form of MND in 2004. (Her father and uncle both had MND). Weakness in her legs progressed to her arms; she is now in a wheelchair. Her speech is unaffected.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Roland - Interview 17 >> For the first year Roland did not want to go to a support group. He worried about seeing others, but also that others might be upset to see him becaus

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 - familial/inherited >> Liz - Interview 39 >> She enjoyed a hospice support group in New Zealand but now she's back in the UK she's not sure she wants to join another group, especially with other

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 >> 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 >> 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 - PLS (primary lateral sclerosis) >> 'Speedy' - Interview 19 >> As someone with PLS, she felt meeting people with more rapidly progressing forms of MND would be too upsetting, but more recently she has decided to t

'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 >> Carers >> Ann & Barry - Interview 48 >> Barry found it upsetting to meet others with MND and does not want to share how he feels. Ann wasn't so scared by it.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Peter - Interview 38 >> He enjoyed work and misses it very much. He gets involved in other activities, especially politics, but loss of mobility restricts what he can do.

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 >> Carers >> Bev - Interview 47 >> She felt worried and unprepared for dealing with her mother's PEG. To be feeding the person who had always nurtured her seemed a strange role reversal

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 >> Carers >> Harry - Interview 43 >> The uncertainty of how his wife's condition will progress causes him great anxiety.

Harry's wife was diagnosed with bulbar onset MND two and a half years ago. She is now unable to speak. She finds swallowing very difficult, and has a PEG fitted.

• 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 >> Ann & Barry - Interview 48 >> It is sad to have changed from being just a wife to being a carer. She misses him being able to hold her hand. Becoming a carer is a progression.

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 >> 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 >> Rarer forms - familial/inherited >> Ken - Interview 34 >> He gave the speech at his daughter's wedding using a laptop computer and a projector. [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 >> Sarah - Interview 21 >> After some frustrating failed experiments with voice software, she successfully uses a system called EZ Keys with a chin switch. [Voice software inter

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 >> Carers >> Harry - Interview 43 >> His wife is sometimes sad that she can't eat what everyone else is eating. He feels guilty that he can still enjoy food when she can't.

Harry's wife was diagnosed with bulbar onset MND two and a half years ago. She is now unable to speak. She finds swallowing very difficult, and has a PEG fitted.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Ann & Barry - Interview 48 >> Her husband uses a ventilator. She describes two frightening occasions when he briefly stopped breathing and she revived him. It happens sometimes whe

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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Kim - Interview 10 >> She resisted taking an antidepressant for emotional lability but now she's glad she does. She enjoyed the laughter but not the crying.

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 >> Ken - Interview 34 >> Her husband's emotional reactions have become quite different, and he laughs and cries unexpectedly. He does not want to take medication. [Ken is unab

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 - PLS (primary lateral sclerosis) >> Hal - Interview 26 >> He found it difficult to control his emotions. He was worried about becoming reliant on an antidepressant but it has made him calmer and restored his

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 >> Dick - Interview 42 >> Di's emotions became volatile a year before physical symptoms emerged and it caused some difficulties between them, so they saw a counsellor.

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 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 >> Rarer forms - PLS (primary lateral sclerosis) >> 'Speedy' - Interview 19 >> She thinks she's emotionally quite tough, but every few days she has to cry. It's a combination of frustration, anxiety, loneliness and tiredness.

'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) >> Jim - Interview 18 >> He describes the range of emotions he feels, including anxiety, sadness, grief and loneliness.

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 >> Sarah - Interview 21 >> She became very depressed and tried hypnotherapy and counselling. The hospice medical director persuaded her to try an antidepressant, and gives conti

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 - 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 50-64 >> Phil - Interview 28 >> It has brought him and his wife even closer together. They have both had to adjust to changing roles as he becomes more dependent on her.

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 >> Dick - Interview 42 >> Caring for his wife made them closer than ever before, and they put aside trivia and disagreements. It was important to continue to have a sex life.

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 and his wife have become closer, but sometimes they get frustrated. He admires how strong his wife has been for both of 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 - PMA (progressive muscular atrophy) >> Jim - Interview 18 >> Living with MND can bring out problems in a relationship, but he and his wife feel close enough to work things through without counselling.

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) >> Judith - Interview 12 >> Her husband finds it stressful caring for her and working. It has affected their relationship, but he'd find paid carers in their bedroom and bathroom

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 gets irritated that she cannot run the household and has to let her husband do it. He finds it hard to take on the role of carer, which he had nev

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 >> Harry - Interview 43 >> Sometimes he gets impatient waiting for his wife to say something with her Lightwriter, which he knows he shouldn't.

Harry's wife was diagnosed with bulbar onset MND two and a half years ago. She is now unable to speak. She finds swallowing very difficult, and has a PEG fitted.

• Nerves & brain >> Motor Neurone Disease >> Bulbar onset >> Mike - Interview 23 >> Their sex life has not been affected, but they miss talking to each other. It can be challenging being together so much and sometimes they need space.

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 65+ >> Derek - Interview 27 >> It saddens him that they can no longer have sex, but he tries to cuddle his wife and be as physical as he can.

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 - familial/inherited >> Liz - Interview 39 >> She misses being able to show physical affection. Now she has learnt to ask people for a kiss or a hug.

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 >> Carers >> Peter & Olivia - Interview 46 >> Swimming helped a lot in the early stages. It was tiring, but being able to move in the water lifted her spirits.

Peter's daughter Olivia (aged 22) died within a year of developing pain and weakness in her leg, in late 2006. Diagnosis of MND remained uncertain, as aspects of her condition were unusual.

• 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 >> Sue - Interview 31 >> Her hospice is a place of kindness, giving practical and emotional support, including home visits, advice on benefits and making a Living Will. [Voice

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.