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• 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 >> Liz - Interview 39 >> She thought she wanted to stop work, but she was glad her boss persuaded her to keep doing project work. It's important for her husband to have the no

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 - PLS (primary lateral sclerosis) >> James - Interview 16 >> He is battling to get disabled parking spaces closer to public buildings but the council says they meet government guidelines. He finds a scooter more

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 50-64 >> Ken - Interview 15 >> The location and design of ramps and dropped kerbs is often a problem but his local council has responded quickly to his suggestions.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Sylvia - Interview 25 >> Using a scooter gives her great freedom. She can get into most shops. When she got stuck in a small shop once she asked the staff to carry her out. Sh

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 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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Phil - Interview 28 >> Driving was everything to him. He had an independent assessment of his driving and got the car adapted so he could continue.

Phil was diagnosed just over a year ago, after nearly 2 years of leg weakness. He is still able to walk at home but uses a wheelchair and scooter outdoors. He has some weakness in his right arm.

• 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 >> 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 >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Audrey - Interview 02 >> She does not want to go to the day centre at the hospice where she sometimes has respite care. She does not want to meet others with MND or talk about

Audrey first noticed symptoms 11-12 years ago. Diagnosis confirmed three years later (1995). Still living at home with support from a daily carer and respite care in a hospice.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Kim - Interview 10 >> Continuing part-time work as an occupational therapist is psychologically important. Having MND gives her new insights into her work. She can still dr

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Phil - Interview 28 >> He knew he could no longer demonstrate cars. He worried how his employers would react and how he would continue to earn a living.

Phil was diagnosed just over a year ago, after nearly 2 years of leg weakness. He is still able to walk at home but uses a wheelchair and scooter outdoors. He has some weakness in his right arm.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> She can still drive to work and enjoys the independence and the income. She doesn't want to think about a time when she can't work.

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 - PMA (progressive muscular atrophy) >> Jim - Interview 18 >> He could continue teaching while only his legs were affected. His employers were very supportive and Access to Work helped with equipment and travel.

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 >> Rarer forms - PLS (primary lateral sclerosis) >> James - Interview 16 >> He was proud never to have had a day's unemployment. Realising he was not going to work again was hard to accept.

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 50-64 >> Slawomir - Interview 33 >> His business installing industrial laundry machinery is physically too hard for him now. He is frustrated to be stuck at home.

Slawomir was diagnosed 3 months ago, 18 months after first noticing weakness in his leg. He wonders if he may in fact have Lyme Disease. He can still walk and drive.

• 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 >> Tess - Interview 44 >> Sometimes she tends to look on the dark side, but her partner's positive attitude rubs off on her.

Tess met her partner, who had already been diagnosed with MND, when volunteering at a sailing club for disabled people. She now lives with him and is his main carer. (See Marcelin, MND37)

• Nerves & brain >> Motor Neurone Disease >> Carers >> Mary - Interview 04 >> They want to keep life as normal as possible, and so they chose not to contact a support group.

Mary is the wife of man diagnosed with MND a year before interview (2003). (Couple also interviewed together - see Jack's story MND03).

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Marcelin - Interview 37 >> It is important to him that his mind is unaffected and he can continue to work in the same job.

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 >> Penny - Interview 11 >> Using an electric scooter out of doors was hard to accept but it gives her more freedom. At home she still walks. In the kitchen she's found a kettle

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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Michael - Interview 29 >> Driving is his passion, but he will probably need to change to an automatic soon. He misses waving a scarf and clapping at football matches too.

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 >> Rarer forms - PLS (primary lateral sclerosis) >> 'Speedy' - Interview 19 >> She has taken up piano, knitting and embroidery. They're not things she'd ever have wanted to do before, but at least they keep her occupied.

'Speedy' was diagnosed with primary lateral sclerosis (PLS) nearly 2 years ago (in 2005) after 2 years of increasing leg weakness. She now uses a wheelchair and a hand-operated car.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> She does not want her daughters to feel they should look after her - that is not why she had children. She wants them to lead their own lives.

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) >> Peter - Interview 20 >> Everyone has to find their own way of coping. They both feel it is important to maintain their own interests. [Peter cannot speak much].

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 - PLS (primary lateral sclerosis) >> 'Speedy' - Interview 19 >> For a long time she managed to be 'happily in denial' but then reality set in and her whole life seemed to revolve around disability.

'Speedy' was diagnosed with primary lateral sclerosis (PLS) nearly 2 years ago (in 2005) after 2 years of increasing leg weakness. She now uses a wheelchair and a hand-operated car.