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Motor Neurone Disease
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Diagnosis :
First symptoms
Path to diagnosis
Immediate reactions to diagnosis
Possible causes of MND (including familial MND)
Telling others
Treatment/ interventions :
Medication, trials and research
PEGs, RIGs and ventilation
Complementary therapies and alternative treatments
Physical therapy and exercise
Information and support :
Information needs
Support groups and meeting others
Work/ career and money :
Work and career
Finances and benefits
Living with MND :
Mobility, arm and leg weakness
Aids, equipment and adaptations
Personal care and care support
Speech and communication
Eating, swallowing and breathing
Tiredness, pain and discomfort
Forgetfulness and thinking
Emotional lability, depression and low mood
Relationships and sex
Leisure, holidays and travel
Impact on family carers
Feelings about life and the future :
Philosophy, attitude to life and messages to others
Hospices, respite and thoughts about future care
Thoughts about death, dying and bereavement
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Coordination of care
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Motor Neurone Disease
Subject index
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Nerves & brain
>>
Motor Neurone Disease
>>
Rarer forms - PMA (progressive muscular atrophy)
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Pauline - Interview 30
>>
She goes to the gym as much as she wants. Keeping fit and active helps her fight the condition and stay positive.
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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Peter - Interview 38
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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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 20-49
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Kim - Interview 10
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She would have liked physiotherapy as soon as she was diagnosed, to stop her leg muscles getting so tight, but she knows it cannot slow progression.
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
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Motor Neurone Disease
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Rarer forms - PLS (primary lateral sclerosis)
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'Speedy' - Interview 19
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She advises others to hold out as long possible before moving onto the next piece of equipment. She wants to stay 'in the land of the vertical' and no
'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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Phil - Interview 28
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His OT is good at forecasting what equipment he'll need before he realises it. It's reassuring to know she can provide solutions as things progress.
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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 20-49
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Kim - Interview 10
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As an OT herself, she knows it's important to request equipment in advance. Her community OT has taken a lead in advising her on adapting the house.
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
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Motor Neurone Disease
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Rarer forms - familial/inherited
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Liz - Interview 39
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The occupational therapists have been key people in her care. They help her plan what equipment she's going to need and adjust emotionally.
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
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Jim - Interview 18
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Planning equipment and adaptations in advance was a way of fighting back. With hindsight it might have been better to implement all the plans early on
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
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
>>
Paul - Interview 09
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It can take a long time to get equipment or care in place so you have to anticipate future needs. Sometimes by the time you get equipment it may no lo
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
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Pauline - Interview 30
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Equipment is sometimes poor quality - she was given a shower seat which went rusty within days. She likes the trolley she uses in the kitchen and a se
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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 65+
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Maryse - Interview 06
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It's hard to open her eyelids when she wakes, and she can no longer keep her eyes open to read.
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
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Motor Neurone Disease
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Bulbar onset
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Ann - Interview 24
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After diagnosis she spent an hour in clinic being given information. It was too much at that stage and she doesn't want to think about the negative si
Ann was diagnosed with bulbar onset MND within the last 6 months (in 2006), after speech and swallowing difficulties. She is about to have a Percutaneous Endoscopic Gastrostomy (PEG).
Nerves & brain
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Phil - Interview 28
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At first you can't take in any information. It is a good idea to have another appointment within a week so you can think what you need to ask.
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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Ken - Interview 15
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He is glad the doctor did not tell him straight away the worst that could happen. No-one can predict how you will be affected. At a second appointment
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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 65+
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Shyam - Interview 35
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He does not want any information about MND and what other people feel. He wants to experience it for himself and wait to see what happens.
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
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Roland - Interview 17
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The consultant who diagnosed PMA 7 years ago gave him no further information and did not suggest he contact the MND Association. He would have liked t
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
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Jim - Interview 18
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He prefers to be told if his symptoms have progressed, even if it's upsetting. Staff have a difficult judgement to make about what different people wa
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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 65+
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Sylvia - Interview 25
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She wants honest information, but it's good to be given some hope and encouragement, not just negative information - no one knows what will happen.
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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 20-49
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Michael - Interview 29
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You need to know some things, but he feels too fragile to find out about progression and prognosis. Staff must inform people sensitively but there's n
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
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Jim - Interview 18
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The information sources he's used include the internet, books, the MND Association and BUILD. Other people with MND can sometimes tell you more than p
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
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Motor Neurone Disease
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Bulbar onset
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Vim - Interview 32
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He read all the MND Association information so he knew what he was facing, then put it aside. The information should be available at the hospital when
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
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Motor Neurone Disease
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Rarer forms - PLS (primary lateral sclerosis)
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Hal - Interview 26
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He told his family not to look at the MND Association website because he feels the information about life expectancy is too negative.
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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 65+
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Audrey - Interview 02
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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
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Roland - Interview 17
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For the first year Roland did not want to go to a support group. He worried about seeing others, but also that others might be upset to see him becaus
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
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Motor Neurone Disease
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Rarer forms - familial/inherited
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Liz - Interview 39
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She enjoyed a hospice support group in New Zealand but now she's back in the UK she's not sure she wants to join another group, especially with other
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
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Motor Neurone Disease
>>
Rarer forms - PMA (progressive muscular atrophy)
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Jim - Interview 18
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He was frightened about seeing people whose symptoms had progressed more than his, but in fact it encouraged him to feel he could cope.
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
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Motor Neurone Disease
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Carers
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Peter & Olivia - Interview 46
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His 22-year-old daughter felt a support group meeting was not right for her, partly because her symptoms were progressing unusually fast.
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
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Motor Neurone Disease
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Carers
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Ann & Barry - Interview 48
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Barry found it upsetting to meet others with MND and does not want to share how he feels. Ann wasn't so scared by it.
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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 20-49
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Kim - Interview 10
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She values contact through the BUILD-UK site, but has taken a break from it, as she felt MND was taking over her life. She's not sure she'd want face-
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
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Motor Neurone Disease
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Bulbar onset
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Vim - Interview 32
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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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Sandy - Interview 36
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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
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Motor Neurone Disease
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Rarer forms - familial/inherited
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Liz - Interview 22
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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
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Motor Neurone Disease
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Carers
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Una & Bill - Interview 49
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Becoming a carer has crept up on her. Each step feels like a mini-bereavement but it's amazing what she has got used to. A practical focus helps.
Una's husband Bill first noticed symptoms at the end of 2005 and was diagnosed aged 63. A ventilator greatly improved his energy levels for nearly a year. He had a PEG fitted but does not yet use it for feeding.
Nerves & brain
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Motor Neurone Disease
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Carers
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Harry - Interview 43
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The uncertainty of how his wife's condition will progress causes him great anxiety.
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
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Motor Neurone Disease
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Bulbar onset
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Mike - Interview 23
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They try to live a normal life. It helps to plan ahead, but you have to deal with challenges as they arise. Sometimes they feel vulnerable when severa
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
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Motor Neurone Disease
>>
Rarer forms - PMA (progressive muscular atrophy)
>>
Jim - Interview 18
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He tries to find a balance between planning ahead but not thinking about it all the time. Each day he plans something enjoyable and something practica
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
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Motor Neurone Disease
>>
Rarer forms - PMA (progressive muscular atrophy)
>>
Paul - Interview 09
>>
His advice is to keep life as normal as possible and think positive. At the same time you need to anticipate what you may need in future.
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 50-64
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Sandy - Interview 36
>>
He tries to make the best of a 'bad hand' of cards. He advises others to inform themselves and ask for help, but not to give up.
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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Marcelin - Interview 37
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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
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Motor Neurone Disease
>>
ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Peter - Interview 38
>>
Sometimes he worries he has problems breathing or swallowing, but thinks it's really his imagination. It helps not to think too far ahead.
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
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Motor Neurone Disease
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Rarer forms - PMA (progressive muscular atrophy)
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Pauline - Interview 30
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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.
Nerves & brain
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Motor Neurone Disease
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Carers
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Peter & Olivia - Interview 46
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His daughter used to panic about breathing, especially when using the loo, but she could control it by concentrating her mind.
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
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Motor Neurone Disease
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Carers
>>
Harry - Interview 43
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When his wife gets tired she finds it hard to keep her eyelids open and sometimes holds them open with her hands.
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
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Motor Neurone Disease
>>
ALS- amyotrophic lateral sclerosis/MND aged 20-49
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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
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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
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Motor Neurone Disease
>>
Rarer forms - PMA (progressive muscular atrophy)
>>
Judith - Interview 12
>>
She has adapted to changes in her arms and legs. She managed cooking by getting her husband to lift heavy pans and hot dishes. She took up hobbies whi
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
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Motor Neurone Disease
>>
Rarer forms - PMA (progressive muscular atrophy)
>>
Roland - Interview 17
>>
He tries to keep warm and avoid falls - his arms are too weak to break his fall. He uses his head to operate the shower, and has learnt to 'throw his
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
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Motor Neurone Disease
>>
ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Ken - Interview 15
>>
Gradually he found it harder to get up from sitting, and he had several falls. His wife can't lift him but buying a lightweight mobile hoist has helpe
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 50-64
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Peter - Interview 38
>>
He fell on the stairs and within a year could no longer walk. His hand is too weak to operate a scooter. He tried to keep mobile and resist using equi
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
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Motor Neurone Disease
>>
Rarer forms - PMA (progressive muscular atrophy)
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Judith - Interview 12
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She uses slippery nighties and a strap to pull her leg up to help her turn in bed. She advises people to accept when they need extra support, before t
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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Penny - Interview 11
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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
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Motor Neurone Disease
>>
Rarer forms - familial/inherited
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Liz - Interview 22
>>
One occupational therapist told her she could not have a ramp and she'd have to move. A different OT took over and managed to sort it out.
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
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Motor Neurone Disease
>>
Rarer forms - familial/inherited
>>
Liz - Interview 22
>>
She advises people to 'live each day'. Professionals need to assess everyone as an individual and not assume the same solutions will do for everyone w
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
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Motor Neurone Disease
>>
ALS- amyotrophic lateral sclerosis/MND aged 50-64
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Phil - Interview 28
>>
It has brought him and his wife even closer together. They have both had to adjust to changing roles as he becomes more dependent on her.
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
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Motor Neurone Disease
>>
ALS- amyotrophic lateral sclerosis/MND aged 20-49
>>
Michael - Interview 29
>>
He and his wife have become closer, but sometimes they get frustrated. He admires how strong his wife has been for both of them.
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 started an online relationship with a man with PLS. But since she's been using a wheelchair he's stopped writing. She thinks he's in denial about
'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
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Motor Neurone Disease
>>
Rarer forms - PLS (primary lateral sclerosis)
>>
Peter - Interview 20
>>
Their way of coping was to ignore the condition. It's only more recently they've admitted it to themselves. It helps that it is PLS. [Peter cannot spe
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
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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.
Nerves & brain
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Motor Neurone Disease
>>
ALS- amyotrophic lateral sclerosis/MND aged 65+
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Derek - Interview 27
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No one can predict how the condition will affect you, so never give up hope.
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
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Motor Neurone Disease
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ALS- amyotrophic lateral sclerosis/MND aged 50-64
>>
Phil - Interview 28
>>
Once you've accepted you have the condition you can start to get support in place and look forward to the future.
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
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Motor Neurone Disease
>>
Carers
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Harry - Interview 43
>>
It is too frightening for him to talk to his wife about what will happen to her in future. His daughter has taken on this responsibility for him.
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
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Motor Neurone Disease
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Carers
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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).
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