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• Nerves & brain >> Motor Neurone Disease >> Eating, swallowing and breathing >> Eating, swallowing and breathing

Eating, swallowing and breathing

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• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Ken - Interview 34 >> They sit round the table together for meals and Ken does his PEG feed. At Christmas he stuck jokey labels on the bottles. [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 >> Mike - Interview 23 >> They want to be as independent as possible. Mike has a portable pump for his PEG so they can take it with them to restaurants to eat with friends. [Mi

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 - familial/inherited >> Ken - Interview 34 >> He had coughing fits which became so bad he started to eat lunch alone in case it made him choke. They did not realise MND could be hereditary. [Ken i

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 >> 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 >> 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 >> Rarer forms - PMA (progressive muscular atrophy) >> Judith - Interview 12 >> She lost weight and was advised to eat high calorie, high fat foods and fortified drinks. A big plate of food is too daunting. She prefers not to eat

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 - familial/inherited >> Liz - Interview 39 >> She still enjoys her food and eating out, even though she thought she'd be embarrassed about being helped to eat in public.

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 >> Bulbar onset >> Sue - Interview 31 >> She has several tips to help with eating and swallowing. [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 >> 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 >> Rarer forms - familial/inherited >> Liz - Interview 22 >> The first time she choked she was terrified. Now she manages it by staying calm. Choking is very unlikely to be fatal.

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 65+ >> Maryse - Interview 06 >> In the night her nose gets blocked and she can't swallow. She and her carers have found sleeping in a recliner chair helps. She finds her tongue doesn

Maryse was diagnosed March 2005. She was told she had 2-3 years to live. Within months she could no longer live independently and moved into a nursing home. Her speech deteriorated rapidly.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Liz - Interview 39 >> Her lung capacity is reduced but her breathing is still good. Occasionally she feels a bit out of breath - relaxation and aromatherapy help.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Martin - Interview 40 >> Day-to-day living is hard, especially eating, washing and dressing. His hands get tend to get cold and seize up.

Martin was diagnosed about a year ago in 2006, after a year of weakness in his fingers and hands. Movement in his arms is now very limited, but his legs and speech are not affected.