• Clip
• Nerves & brain >> Motor Neurone Disease >> Bulbar onset >> Vim - Interview 32 >> His wife has to leave early for work and gets very tired caring for him as well, but they need the income.

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 >> Carers >> Harry - Interview 43 >> He's been running his wife's business but now she needs more care he has to decide if he can keep it going. He would miss the excitement of work.

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 - PLS (primary lateral sclerosis) >> Peter - Interview 20 >> Peter goes to the gym to maintain upper body strength - he feels lucky he can afford it. He'd like to be able to do more exercising in water. [Peter c

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Peter - Interview 38 >> He feels 'doing nothing is not an option'. The NHS should offer more active support such as physiotherapy. He pays to have a private physio every day.

Peter was diagnosed three years ago (2004). Symptoms started in his arms and hands, and progressed to his legs. He now uses a wheelchair full-time.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Judith - Interview 12 >> Her husband has improvised solutions which are cheaper and more convenient than the official recommendations. Her OT is helpful and takes away any equ

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 - PMA (progressive muscular atrophy) >> Jim - Interview 18 >> He found wheelchair services unhelpful and inflexible, so he did some research and bought his own wheelchair. But the OTs offer good, helpful advice.

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 - familial/inherited >> Ken - Interview 34 >> Their staircase was too awkward for a stairlift so they moved the bedroom downstairs and had a new bathroom. It was a long and costly process, but the

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 >> Penny - Interview 11 >> She recently heard about through-floor lifts which might suit her house better than a stairlift. You have to be determined to find out what's availabl

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 >> 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 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 >> 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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Sandy - Interview 36 >> He applied for Disability Living Allowance but carried on working until he could no longer hold a telephone and take notes at the same time.

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 >> Rarer forms - familial/inherited >> Ken - Interview 34 >> Using Access to Work for taxis was a great help once they'd sorted out how to claim the fares back. [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 >> 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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Ken - Interview 15 >> He uses voice recognition software, which helps him prepare written documents and presentations now that his arms are weaker. The MNDA helped pay for

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 - PLS (primary lateral sclerosis) >> Hal - Interview 26 >> They met a social worker on the day he was diagnosed. She organised claims for Disability Living Allowance and Carer's Allowance without them even rea

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Paul - Interview 09 >> He was glad to have help from Citizens' Advice in filling in the Disability Living Allowance forms. Waiting for claims to be processed can take a 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 >> Rarer forms - PLS (primary lateral sclerosis) >> James - Interview 16 >> It was difficult to get advice about benefits. He was assessed for Disability Living Allowance by a doctor he'd never met, who told him not to play do

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 20-49 >> Kim - Interview 10 >> A friend helped her with complicated benefit claim forms. She advises people to be realistic about their level of disability.

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 - PMA (progressive muscular atrophy) >> Jim - Interview 18 >> He is bitter that he had to pay for many things out of his own money. Social services should give more financial help and respond faster.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Phil - Interview 28 >> Means-testing is unfair. He'll miss years of pension, and worries about his wife's financial security. Equipment prices are high and not easy to disco

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 - familial/inherited >> Liz - Interview 22 >> She felt direct care payments were too much paperwork. She hates the benefit system and having to explain why she can't work. She lost some of her ben

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 20-49 >> Martin - Interview 40 >> He finds it hard to live on the benefit he gets, and his mum has to help him out financially. He thinks people don't realise how disabling it is to ha

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.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Peter - Interview 38 >> Travelling abroad is too much trouble. Hotels with special facilities exist but cost a lot, and air travel is very stressful.

Peter was diagnosed three years ago (2004). Symptoms started in his arms and hands, and progressed to his legs. He now uses a wheelchair full-time.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Penny - Interview 11 >> She loves travelling all over the world, but travel insurance costs a lot. She does not book too far ahead so she knows what she will be able to manag

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Roland - Interview 17 >> He has been talking to the MND Association about finding travel insurance for people with PMA. At the moment he travels a lot but without insurance.

Roland was diagnosed 7 years ago (1999) with Progressive Muscular Atrophy (PMA) form of MND. His hand muscles are affected but not his speech.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Martin - Interview 40 >> The MND Association helped him pay for a holiday with friends in Amsterdam. It was good to get away and see a different culture.

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.

• Topic
• Nerves & brain >> Motor Neurone Disease >> Finances and benefits >> Finances and benefits

Finances and benefits