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• Nerves & brain >> Motor Neurone Disease >> Bulbar onset >> Mike - Interview 23 >> He was aware his speech was becoming slurred before anyone else noticed, until one day at work someone assumed he must be drunk. [Mike is unable to sp

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 >> Roger - Interview 41 >> When his wife started to slur her speech people thought she'd had too much to drink. He noticed she was becoming frustrated and agitated.

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 >> Dick - Interview 42 >> Di used a letter-frame and signals such as teeth-clicks to communicate. She had been a lecturer so losing her speech was a devastating blow.

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 >> Bulbar onset >> Sue - Interview 31 >> She went to a fit-ball class to help with aching in her neck and arms, and afterwards found she could not speak properly. [Voice software interview].

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 >> Bulbar onset >> Vim - Interview 32 >> His employers were helpful and tried to find alternative work, but he had to stop work quite quickly. They gave him a good early retirement pension.

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 - familial/inherited >> Liz - Interview 22 >> Leaving her job as a classroom assistant left a massive gap in her life, though she's still very busy. She does not like relying on benefits.

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 >> 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 >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Sylvia - Interview 25 >> Non-invasive ventilation has made a big difference. It helps her sleep properly at night and during an afternoon nap, so she has enough energy for the

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 >> 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 >> He uses a ventilator most of the time, which enables him to speak normally. He has adapted well to it, but can't be left alone for too long.

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 >> Jenny - Interview 01 >> Looking back her father had several symptoms before they noticed something was wrong. It was hard to tell what was unusual and what was old age.

Jenny is the daughter of a man who was diagnosed in 2001 with motor neurone disease at the age of 81, and who died 4 months later. He was ill for a year before diagnosis.

• Nerves & brain >> Motor Neurone Disease >> Bulbar onset >> Ann - Interview 24 >> It's frustrating trying to make yourself understood when you have speech problems. She went to an adult education class but couldn't contribute as muc

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 >> Jenny - Interview 01 >> Her father was frightened and frustrated that he couldn't communicate. He could not use a keyboard. Talking to someone with no speech takes time and s

Jenny is the daughter of a man who was diagnosed in 2001 with motor neurone disease at the age of 81, and who died 4 months later. He was ill for a year before diagnosis.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Roger - Interview 41 >> Writing and typing were not easy for Teresa. Her husband adapted her Lightwriter so the keyboard was alphabetical, and programmed in key phrases. They

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 >> He has a Lightwriter but prefers white boards. He uses texting and the internet. His sons ring up and tell him what they've been doing. [Mike is unabl

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 >> Bev - Interview 47 >> She felt most communication aids were not suitable for her elderly mother. The speech therapist at the hospice was dismissive of the picture board she

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 - 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 >> Rarer forms - familial/inherited >> Ken - Interview 34 >> He finds his 'Say-it! SAM' device quicker than a Lightwriter and more fun. Other people don't get so impatient waiting for him to say something. [Ken

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 >> Stuart - Interview 05 >> The MND Association provided a voice amplifier and a Lightwriter so he could talk to his mother who is deaf. He jokes about the sound of the Lightwrit

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 >> Sue - Interview 31 >> She misses being able to talk, laugh and shout, but she loves her voice software and the freedom it gives her to express herself. [Voice software inte

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 >> Bulbar onset >> Sue - Interview 31 >> More needs to be done to raise awareness of the needs of speech-impaired people, and ways need to be found to use voice software on the telephone. [Vo

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 >> Sandy - Interview 36 >> He'd like to see a keyboard you can use on the TV set so other people can share in what you're typing.

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 >> 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 >> 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 likes to be out in his car because he doesn't have to speak. It's the one place where he feels normal.

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 >> 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).

• Topic
• Nerves & brain >> Motor Neurone Disease >> Speech and communication >> Speech and communication

Speech and communication

• 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 >> Rarer forms - familial/inherited >> Ken - Interview 34 >> He finds his 'Say-it! SAM' device quicker than a Lightwriter and more fun. Other people don't get so impatient waiting for him to say something. [Ken

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 >> Carers >> Bev - Interview 47 >> She felt most communication aids were not suitable for her elderly mother. The speech therapist at the hospice was dismissive of the picture board she

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 >> Bulbar onset >> Mike - Interview 23 >> He has a Lightwriter but prefers white boards. He uses texting and the internet. His sons ring up and tell him what they've been doing. [Mike is unabl

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+ >> Sylvia - Interview 25 >> The speech therapist showed her a useful tip for swallowing tablets.

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 >> Carers >> Roger - Interview 41 >> Writing and typing were not easy for Teresa. Her husband adapted her Lightwriter so the keyboard was alphabetical, and programmed in key phrases. They

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.