Motor neurone disease (MND) is a life-shortening, progressive disease that affects the brain and spinal cord. MND is classed as a terminal illness. MND attacks cells in the nerves called motor neurones.
As MND progresses to its final phase, you might experience: increasing body paralysis, which means you'll need help with most daily activities. significant shortness of breath.
This leads to increasing physical disability, as muscles are unable to receive messages from the neurons to move or activate. Without these signals, muscle weakness, wasting and paralysis develop. MND usually develops quickly once symptoms begin, with an average life expectancy of 2-3 years from diagnosis.
Motor Neurone Disease (MND) is a rare, incurable and invariably fatal condition. Many would consider it worse than cancer.
People with MND have particularly complex care and support needs in the final stages of life. Because MND can be rapidly progressive, it is important that people with the condition are offered referral to specialist palliative care services at an appropriate time.
The cause of death in the majority of patients with MND is respiratory failure.
Astrophysicist Stephen Hawking, whose ALS was diagnosed in 1963, had the disease for 55 years, the longest recorded time one had the disease. He died at the age of 76 in 2018.
The different types of MND cause similar symptoms and have three stages: early, middle, and advanced. The diseases progress at different speeds and vary in severity.
Is MND painful? Motor neurones do not transmit or modify pain signals, so the disease itself is not inherently painful. 2 However, pain may be experienced as the disease progresses. Pain may occur at any stage of MND, including early on, with no relationship between pain intensity and length of time since diagnosis.
About 5-10% of all cases of MND can present with predominant lower motor weakness in both arms (Flail arm / man in a barrel syndrome) or in both legs (Flail leg). This is slowly progressive.
This prompted us to investigate the potential predictive factors associated with these two crucial outcomes in MND. Poor prognostic factors for survival also include bulbar onset, older age of onset, shorter interval from symptom onset to diagnosis and rapid disease progression [1, 9].
Spontaneous remission of non-symptomatic MND is extremely rare. Here, we report a case presented with progressive muscular atrophy disease (PMA) like the picture, who resolved spontaneously.
Lifestyle and environment
These studies have found possible links between MND and: mechanical and/or electrical trauma. military service. high levels of exercise.
Many of the people we talked to had been experiencing symptoms for months or even years before finally getting a diagnosis. Some lived with their symptoms for a long time before deciding to go to their GP, perhaps putting them down to stress, old age, or injury. (See 'First symptoms of MND').
For many people with MND, as the disease and consequent muscle weakness progresses, they experience problems that disrupt their sleep3, 6. Waking up frequently or having trouble getting to sleep then creates other sorts of strains and pressures, adding to the burden of the disease4.
Motor neurone disease is an uncommon condition that mainly affects people in their 60s and 70s, but it can affect adults of all ages. It's caused by a problem with cells in the brain and nerves called motor neurones. These cells gradually stop working over time. It's not known why this happens.
The outlook for individuals with MNDs varies depending on the type and the age the symptoms begin. MNDs, such as PLS or Kennedy's disease, are usually not fatal and progress slowly. People with SMA type III may be stable for long periods. Some forms of MND, such as the severe form of SMA and ALS, are fatal.
Some people with MND experience changes to emotions, thinking and behaviour, which may need specific support. Informing other people can feel emotionally challenging, but once people know what's happening, you can all support each other.
The simplest way you can help is just acknowledging that they have motor neurone disease. That means giving them more space, and being considerate of the fact they may take that little longer to move around or get themselves ready in the morning.
Living With a Motor Neuron Disease
Some are milder and progress more slowly than others. Although there is no cure for motor neuron diseases, medicines and therapy can ease symptoms and improve your quality of life.
Patients with motor neuron disease (MND) are generally free of cognitive impairment, but evidence is growing to support an association between MND and frontal lobe or frontotemporal dementia (FTD).
The end-of-life phase in MND is variable from one patient to another. This phase is marked by any combination of significant functional decline, respiratory failure, dysphagia, marked weight loss, recurrent infection and cognitive decline.
Lucy Lintott always dreamed of having children but when she was diagnosed with Motor Neurone Disease (MND) at just 19 she was told she would never be able to have a family.