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• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Shyam - Interview 35 >> He once got stranded in the bath after he let the water out. Now he has a shower seat.

Shyam was diagnosed with MND about six months ago (2006). He has difficulty walking and uses a wheelchair. His speech is slowing down and his voice is changing.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Roger & Luise - Interview 45 >> They built a bathroom extension, with a large wet room and a hoist loaned by the MND Association, so they could care for Luise at home themselves.

Roger's wife Luise was diagnosed in 2004 aged 59, after a year of weakness in her fingers and leg. Roger and his sons cared for Luise at home until her death in 2006.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Peter & Olivia - Interview 46 >> They put in a downstairs bathroom with bath and hoist. Olivia's symptoms were progressing rapidly, so they paid for it themselves to get it done quick

Peter's daughter Olivia (aged 22) died within a year of developing pain and weakness in her leg, in late 2006. Diagnosis of MND remained uncertain, as aspects of her condition were unusual.

• 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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Ken - Interview 15 >> He has a Clos-o-Mat toilet at home which gives him independence. They are now available in some public disabled toilets, but not his local hospice.

Ken was diagnosed with amyotrophic lateral sclerosis (ALS) form of MND 5 years ago (2002). His arm muscles were affected first, followed by his leg muscles. His speech is not affected and his condition has progressed more slowly than he originally expected.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Paul - Interview 09 >> Public disabled toilets are often cluttered and badly designed. Using a hoist is uncomfortable if you have breathing problems, so a Clos-o-Mat toilet

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 >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Maryse - Interview 06 >> When she was admitted to hospital the nursing staff did not listen to her when she said she needed the toilet, so she ended up wetting her clothes.

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 - PLS (primary lateral sclerosis) >> Peter - Interview 20 >> A plan to have a paid carer fell through. They manage together and find their own solutions. Peter can't get to the toilet quickly; going often helps.

Peter was diagnosed with primary lateral sclerosis (PLS) 8 years ago (1998). Symptoms progressed quickly at first, but now more slowly. His speech was severely affected, so he was interviewed through his wife Ann. His mobility is also affected.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Liz - Interview 39 >> Having a catheter has given her greater freedom to go out. She no longer has to worry about asking people to help her and it makes it less personal.

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 >> Carers >> Ann & Barry - Interview 48 >> She wants to care for her husband herself as long as she can. He does not want carers' working hours dictating what time he gets up or goes to bed.

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 65+ >> Sylvia - Interview 25 >> Her husband was upset when she considered having outside help with washing and dressing. Now he helps her and it has made them closer.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Kim - Interview 10 >> Having strangers washing and dressing you is difficult, but she felt it was better for her marriage and her family to have carers coming in.

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 >> Rarer forms - familial/inherited >> Liz - Interview 39 >> Having paid carers is fantastic because she doesn't feel guilty asking them to do things for her. The only downside has been the lack of continuity of

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 >> Sarah - Interview 21 >> Organising care was hard at first but now she has a great team of dedicated people. With their support she can still live at home with her children. [

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 >> Liz - Interview 22 >> It was hard having personal care from different carers she didn't know, and tiring explaining everything to each new person. Now she has someone she l

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 >> Dick - Interview 42 >> Getting care staff organised with Direct Payments was hard work. They needed more care hours, but staff sometimes didn't turn up and couldn't lift Di.

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 >> Carers >> Bev - Interview 47 >> Organising paid care for her mother was very stressful. They saw a string of different carers, many of whom behaved inappropriately.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Michael - Interview 29 >> He enjoys work but has stopped at the moment partly because he doesn't like asking colleagues for help, but mainly because he wants to spend the time

Michael was diagnosed less than a year ago in 2006 after noticing weakness in his right arm. His arm weakness remains his main symptom, and it has got worse. Currently he is on sick leave from work.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Roger & Luise - Interview 45 >> Roger found strength from somewhere. It was wonderful to see his sons involved in caring for their mother. Parishioners from her church rallied round.

Roger's wife Luise was diagnosed in 2004 aged 59, after a year of weakness in her fingers and leg. Roger and his sons cared for Luise at home until her death in 2006.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Marcelin - Interview 37 >> He tries to keep active. Singing in music therapy helps his breathing. He had breathing problems when he became ill and has learnt that staying fit is

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Judith - Interview 12 >> Her husband finds it stressful caring for her and working. It has affected their relationship, but he'd find paid carers in their bedroom and bathroom

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 50-64 >> Marcelin - Interview 37 >> Marcelin never thought he'd have another relationship, but it means a lot to him that Tess wants to be with him and values him as he is now.

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 >> Ken - Interview 15 >> He worries about the physical and emotional burden on his wife and how she will cope in future.

Ken was diagnosed with amyotrophic lateral sclerosis (ALS) form of MND 5 years ago (2002). His arm muscles were affected first, followed by his leg muscles. His speech is not affected and his condition has progressed more slowly than he originally expected.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Peter & Olivia - Interview 46 >> He and his wife did a lot of lifting. It was hard physically, but as parents they just did whatever it took to make their daughter comfortable.

Peter's daughter Olivia (aged 22) died within a year of developing pain and weakness in her leg, in late 2006. Diagnosis of MND remained uncertain, as aspects of her condition were unusual.

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• Nerves & brain >> Motor Neurone Disease >> Personal care and care support >> Personal care and care support

Personal care and care support