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• Nerves & brain >> Motor Neurone Disease >> Tiredness, pain and discomfort >> Tiredness, pain and discomfort

Tiredness, pain and discomfort

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• Nerves & brain >> Motor Neurone Disease >> Carers >> Una & Bill - Interview 49 >> Her husband went to the GP about a slight cough when he was eating. Within a few months he was walking slowly and seemed constantly tired. He develope

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 >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> 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 >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Paul - Interview 09 >> He lost muscle strength each time he was in hospital and found it hard to get active again. Before diagnosis he was referred to a gym, but that was to

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 >> 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 >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Sylvia - Interview 25 >> Non-invasive ventilation has made a big difference. It helps her sleep properly at night and during an afternoon nap, so she has enough energy for the

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 >> Bulbar onset >> Ann - Interview 24 >> It's frustrating trying to make yourself understood when you have speech problems. She went to an adult education class but couldn't contribute as muc

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 >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Stuart - Interview 05 >> He advises people to 'make MND live with you, not the other way round'. He describes simple breathing exercises to use during the day.

Stuart first noticed symptoms (legs shaking) almost 20 years ago. MND diagnosed 9 years ago (1997), after years of tests and investigations. Now uses a wheelchair.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Judith - Interview 12 >> She tries to plan only one thing a day. She advises people to take their time and to rest between activities during the day.

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 - PLS (primary lateral sclerosis) >> Hal - Interview 26 >> He thinks it's important to fight MND and make every day count. But sometimes tiredness hits you like a brick wall and then you need to stop and rest.

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) >> Pauline - Interview 30 >> When she's tired she feels the best way to deal with it is to just ignore it and keep going, but it's frustrating not being able to do some things any

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 >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Cordelia - Interview 13 >> She has lost stamina and now gets very tired. After a lot of activity she tends to get muscle pain.

Cordelia was diagnosed a year ago (2005) with MND after investigations for other conditions including spinal muscular atrophy. She now has considerable muscle weakness.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Peter - Interview 38 >> He doesn't get too tired unless it's a very busy day, but he gets uncomfortable sitting in a wheelchair for too long. Lying in bed helps ease the disc

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 >> Carers >> Roger & Luise - Interview 45 >> His wife got very tired but found it difficult to get comfortable in bed. Using different mattresses and cushions made little difference.

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 >> Rarer forms - familial/inherited >> Liz - Interview 39 >> Pressure on her heels was uncomfortable at night, but a ROHO cushioned insert helped a lot. Getting a good night's sleep helps her cope better in the

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 >> Harry - Interview 43 >> 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 >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Marcelin - Interview 37 >> He gave up driving because he was worried that tiredness would make him lose concentration at the wheel and cause an accident.

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 - PLS (primary lateral sclerosis) >> 'Speedy' - Interview 19 >> Tiredness is like a veil coming down. She gets so exhausted if she tries to do more than one thing a day that she feels physically almost uncomfortabl

'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 >> Carers >> Peter & Olivia - Interview 46 >> Swimming helped a lot in the early stages. It was tiring, but being able to move in the water lifted her spirits.

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 and his wife have had a packed summer. She takes him fishing in his wheelchair, and helps him make toys for their grandsons in his workshop. It's i

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.