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• 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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Penny - Interview 11 >> She was advised to have a PEG because of weight loss. She decided not to have one and feels that was the right decision for her. The way it was sugges

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 - familial/inherited >> Liz - Interview 39 >> She had a PEG fitted while her lung capacity was still good - the procedure was simple. So far she has not used the PEG, but it's there if she needs i

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 - familial/inherited >> Liz - Interview 22 >> Her PEG was fitted early, to prevent weight loss. She has had two infections, but now hardly notices it. She wonders if it will need replacing before

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 >> Harry - Interview 43 >> His wife was advised to have a PEG. They were very happy with the care. However, the tube had to be replaced several times because it kept perishing.

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 >> Sue - Interview 31 >> She couldn't tell staff how much pain she was in after the RIG procedure. She could still eat but no-one asked her if she would like any food. Recover

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Paul - Interview 09 >> It can take a long time to get equipment or care in place so you have to anticipate future needs. Sometimes by the time you get equipment it may no lo

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 >> Una & Bill - Interview 49 >> Non-invasive ventilation hugely improved her husband's quality of life, but now they realise how dependent on it he is they are having to think about

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 >> Roger - Interview 41 >> As Teresa became weaker, a PEG was suggested. She developed breathing difficulties and had non-invasive ventilation but would not have wanted invasive

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Judith - Interview 12 >> She uses slippery nighties and a strap to pull her leg up to help her turn in bed. She advises people to accept when they need extra support, before t

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 >> Dick - Interview 42 >> Di decided she had had enough so she stopped eating. They said a lovers' goodbye to each other. She wanted to be conscious, and she died peacefully at

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 >> Marcelin - Interview 37 >> His Living Will states that he does not want any ventilation. He wants those caring for him to let him go slowly and naturally. He does not want to be

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 >> Penny - Interview 11 >> A Living Will makes her wishes clear even if she can no longer express them. She wants the best quality of life she can without invasive intervention,

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 >> Carers >> Bev - Interview 47 >> She felt vulnerable till her mother's Living Will was finalised. Staff should raise it as a possibility early on, and support the family in completing

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.