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• 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 >> 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 >> 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 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 >> 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 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 >> 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 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 >> 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 >> 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 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 >> 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 - 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 - PLS (primary lateral sclerosis) >> Peter - Interview 20 >> Their way of coping was to ignore the condition. It's only more recently they've admitted it to themselves. It helps that it is PLS. [Peter cannot spe

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 >> His 22-year-old daughter felt a support group meeting was not right for her, partly because her symptoms were progressing unusually fast.

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 >> 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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Kim - Interview 10 >> She felt nauseous when she first took riluzole, but now has no major side effects.

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 >> 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 >> 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 20-49 >> Michael - Interview 29 >> He enjoys work but has stopped at the moment partly because he doesn't like asking colleagues for help, but mainly because he wants to spend the time

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 >> He doesn't think riluzole makes much difference but continues to take it as he has no side-effects. He tried some other supplements but concluded they

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 had some liver problems taking riluzole, especially when he was also taking minocycline to help with itchy skin.

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 >> Bulbar onset >> Ann - Interview 24 >> She considered taking riluzole but decided she'd rather not risk having side effects. Quality of life matters more to her than quantity.

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 65+ >> Cordelia - Interview 13 >> She decided not to take riluzole in case it made her feel really sick. At her age she is not worried about gaining a few extra months.

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 >> Means-testing is unfair. He'll miss years of pension, and worries about his wife's financial security. Equipment prices are high and not easy to disco

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 >> Roger - Interview 41 >> His wife volunteered for trials and they researched the scientific evidence behind different treatments. It gave him hope, but his wife was less optim

Roger was married to Teresa, who was diagnosed with bulbar onset MND. She died a year ago, aged 64, less than six months after the diagnosis.

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