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• 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) >> Hal - Interview 26 >> He was glad he'd already chosen to retire before diagnosis, rather than being forced to stop work.

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 >> 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 >> Mike - Interview 23 >> He had problems with the PEG procedure because he couldn't swallow the endoscopic tube and he couldn't talk to staff. Eventually he had a general anae

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 >> 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 >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Derek - Interview 27 >> He was brought a lot of equipment he hadn't asked for and didn't want. Most of it is in the shed.

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 >> Bev - Interview 47 >> They waited weeks for some equipment and assessments, but a bath seat arrived which they didn't want. It was hard to find out about aids and car adapt

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Judith - Interview 12 >> Her husband has improvised solutions which are cheaper and more convenient than the official recommendations. Her OT is helpful and takes away any equ

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) >> Jim - Interview 18 >> He found wheelchair services unhelpful and inflexible, so he did some research and bought his own wheelchair. But the OTs offer good, helpful advice.

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 >> Harry - Interview 43 >> He asked a local mobility showroom if they had a kneeler for his wife to work in the garden. They found one in a garden centre catalogue for him.

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 >> Rarer forms - familial/inherited >> Ken - Interview 34 >> Their staircase was too awkward for a stairlift so they moved the bedroom downstairs and had a new bathroom. It was a long and costly process, but the

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 50-64 >> Penny - Interview 11 >> She recently heard about through-floor lifts which might suit her house better than a stairlift. You have to be determined to find out what's availabl

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) >> Judith - Interview 12 >> She's disappointed with the car she got through Motability - she was advised it would be suitable but she can't see out and finds it claustrophobic.

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+ >> Derek - Interview 27 >> Some of the bathroom equipment provided was no use. He thinks staff need to adapt their advice for each person, rather than try to make them change th

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 >> 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 >> Carers >> Roger - Interview 41 >> He understands why staff want to talk directly with patients, but sometimes his wife found it stressful and wanted them to communicate via her husband

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 >> Bulbar onset >> Mike - Interview 23 >> A nurse told her she wasn't needed on the ward, but the doctor had to ask her in because he couldn't understand what Mike was saying. [Mike is unable

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 >> 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 20-49 >> Kim - Interview 10 >> It seems pointless being assessed by the neurologist every six months. She may find clinic visits more useful when she needs more help from a range of

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 >> 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.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> She feels it's her right to choose when to die, if her quality of life becomes poor. She worries about how she might die and about losing dignity. Med

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) >> James - Interview 16 >> He's had a good life and he'd like his doctors to be able to help him end it quickly when the time comes. Many people who oppose assisted dying have n

James was diagnosed with Primary Lateral Sclerosis (PLS) 15 years ago (1991). His wife also had MND and died 3 years ago, 2 years after her diagnosis.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Derek - Interview 27 >> He personally would never consider assisted dying, both for his own sake and his wife's, but he believes other people should have the choice if they w

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.