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

Eating, swallowing and breathing

• Clip
• 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 >> 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 >> 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 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 >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> She got into a 'vicious circle' of anxiety, hyperventilating and imagining she couldn't swallow. She has to tell herself to stop thinking that way and

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.

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

Publication date: 31st March 2008  

Updated: July 2010  Review date: In progress

 

Motor Neurone Disease (MND) is a disease that attacks the upper and lower motor neurones leading to weakness and wasting of muscles, increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. We interviewed 35 people with MND and 11 carers about their experiences of this condition. Select from the key topics below, choose from the full list of topics, or explore all the interviews.