Materiały źródłowe

• #1 Motor neurone disease (MND) | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd/

  Motor neurone disease (MND) is a rare condition that progressively damages parts of the nervous system. This leads to muscle weakness, often with visible wasting. […] As MND progresses, it can become more difficult to do some or all of these activities. […] The symptoms of MND start gradually over weeks and months. They tend to appear on one side of the body first and get progressively worse. […] In about two-thirds of people with MND, the first symptoms are in the arm or leg. This is sometimes called limb-onset disease. The symptoms include: a weakened grip, which can cause problems picking up or holding objects; weakness at the shoulder, making lifting your arm above your head difficult; tripping up over your foot because of weakness at your ankle or hip. […] In 1 out of 4 cases, the first MND symptoms will affect the muscles used for speaking and swallowing.

• #1 Early signs of MND | MND Association

  https://www.mndassociation.org/about-mnd/mnd-explained/early-signs-of-mnd

  You may be worried that you or someone close has motor neurone disease (MND). […] MND is not a common disease and your GP can usually work out if there is a general health problem or injury. […] It can be difficult to reach a firm diagnosis of MND in the very early stages, so this process can take time. It may rely on seeing how symptoms progress. […] These do not all have to be present at the same time. However, as MND is not a common disease, these symptoms are more likely to be the result of another condition, injury or illness. […] If your muscles in your feet, ankles or legs grow weak and waste, this can cause tripping or falls. With MND, 'foot drop’ can be an early symptom, where one foot sometimes feels weak or drags. […] MND can affect speech and communication in these ways, but other conditions can cause these effects too.

• #1 Motor neuron disease (MND): Types, causes, and more

  https://www.medicalnewstoday.com/articles/164342

  Motor neuron disease refers to a group of rare neurodegenerative diseases in which motor nerves in the spine and brain lose function over time. Early signs of motor neuron disease include weakness and slurred speech. […] Motor neuron disease (MND) can appear at any age, but the symptoms usually appear after the age of 50 years. […] 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. […] In the early stage of MND, symptoms develop slowly and can resemble those of other health conditions. The specific symptoms depend on the type of MND and the area of the body it affects. […] Typical symptoms begin in one of the following areas: the arms and legs, the mouth, the respiratory system. They can include: a weakening grip, which makes it hard to pick up and hold things; fatigue; muscle pains, cramps, and twitches; slurred speech; weakness in the arms and legs; clumsiness and stumbling; difficulty swallowing; trouble breathing or shortness of breath; inappropriate emotional responses, such as laughing or crying; weight loss, as muscles lose their mass.

• #1 Motor neurone disease (MND)

  https://www.nhs.uk/conditions/motor-neurone-disease/

  Motor neurone disease (MND) causes muscle weakness that gets worse over a few months or years. It’s usually life-shortening and there’s currently no cure, but treatment can help manage the symptoms. […] Symptoms you may have at first include: stiff or weak hands you may have problems holding or gripping things, weak legs and feet you may find climbing stairs difficult, you may trip over a lot and you may find it hard to lift or move your foot (foot drop), twitches, spasms or muscle cramps (where muscles painfully tighten). […] As MND gets worse, you may: have problems breathing, swallowing and speaking, produce a lot of saliva (drool), have changes in your mood and personality, be unable to walk or move. […] The symptoms affect everyone differently. You may not get all the symptoms and how quickly they get worse can vary from person to person.

• #1 Motor neurone disease (MND) | Better Health Channel

  https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/motor-neurone-disease

  Motor neurone disease (MND) is still incurable, but not untreatable many symptoms can be managed. […] MND often begins with weakness of the muscles in the hands, feet or voice, although it can start in different areas of the body and progress in different patterns and at different rates. People with MND become increasingly disabled. Life expectancy after diagnosis is one to five years, with 10 per cent of people with MND living 10 years or more. […] The physical effects of motor neurone disease can include: muscle aches, cramps, twitching, clumsiness, stumbling, weakness or changes in hands, arms, legs and voice, slurred speech, swallowing or chewing difficulty, fatigue, muscle wasting, weight loss, emotional lability for example, where a slight upset can cause an exaggerated response, such as crying or laughing, cognitive change (changes in thought processes), respiratory changes.

• #1 Progression of MND – MND NZ

  https://mnd.org.nz/about-mnd/what-is-mnd/progression-of-mnd/

  The progression of MND will look different in each individual, most people measure disease progression in terms of the difficulties that they experience in completing everyday tasks and activities. […] There is help available to manage these symptoms and maintain function for longer, in the form of equipment, therapy, personal care, and medication. […] Leg symptoms as the legs become weaker or stiffer it will become more difficult to walk, some people lose the ability to lift their toes and the front of their foot up (foot drop), and the risk of tripping and falling increase. […] Arm symptoms weakness in the muscles of the arms and hands can make it difficult to perform everyday tasks such as dressing, brushing hair and teeth, doing up buttons turning on taps. […] Neck muscle weakness – can make it difficult to lift the head and keep it upright.

• #1 Motor Neurone Disease (MND) – First symptoms of MND

  https://hexi.ox.ac.uk/motor-neurone-disease-mnd/first-symptoms-of-mnd

  Motor Neurone Disease (MND) is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing various combinations of increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. […] The first signs of MND vary from person to person. Some people we talked to first noticed weakness or stiffness in their legs or feet, while others found their arms or hands were affected. […] For some people the first sign anything was wrong was weakness in the muscles around their throat and mouth, leading to problems with speaking or swallowing (known as bulbar onset MND). […] A few people noticed breathing problems early on. […] Up to half of those diagnosed experience changes to thinking and behaviour (known as cognitive change), but this is usually mild.

• #1 The Five Stages of Motor Neurone Disease | MND Care

  https://aspireuk.co.uk/the-five-stages-of-motor-neurone-disease/

  Motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS) or Lou Gehrigs disease, is a progressive and debilitating neurological condition that affects the nerve cells responsible for controlling voluntary muscle movements. […] As these motor neurons degenerate and die, individuals with MND experience gradual muscle weakness, paralysis, and eventually, respiratory failure, impacting their ability to walk, speak, swallow, and breathe. […] Motor neurone disease progresses through distinct stages, each presenting specific symptoms and challenges. The early stage typically involves subtle changes in muscle strength and coordination, while the middle stage sees more pronounced weakness and mobility limitations. […] In the late stage, individuals may experience severe muscle paralysis and respiratory difficulties. Understanding these stages is vital for tailoring care and support to meet the evolving needs of individuals with MND, ensuring optimal management and quality of life throughout the disease course.

• #1 Motor Neurone Disease (MND) 101: Causes, Symptoms, Diagnosis & Treatment – Homage Malaysia

  https://www.homage.com.my/health/motor-neurone-disease/

  Motor neurone disease (MND) affects the brain and nerves, and there are 600 newly diagnosed cases every year in Malaysia. […] MND specifically causes damage to cells called ‘motor neurones’ which carry messages from your brain to your muscles through your spinal cord. Normally, these messages are what allow you to make deliberate movements such as talking, swallowing, breathing and walking. When MND damages these cells, the muscles become harder to control. This can lead to the muscles weakening and deteriorating, causing loss of strength and mobility. Eventually, MND can lead to paralysis or a loss of ability to use any muscles in your body. […] MND is a debilitating condition that increasingly makes your usual activities difficult or even impossible without adequate support. […] The stages of motor neurone disease (MND) are defined by the progression of its symptoms. MND is typically categorised into three stages: early, middle and advanced.

• #1 End of life care for someone with motor neurone disease | Marie Curie

  https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/motor-neurone-disease

  People with motor neurone disease (MND) experience muscle weakness. This can cause problems with mobility, breathing, swallowing and managing daily tasks. […] Motor neurone disease (MND) can progress rapidly and has no cure. […] Manage symptoms of motor neurone disease to ensure the person with MND has the best possible quality of life. […] Signs and symptoms of MND include: muscle weakness, affecting mobility of arms, legs, hands and the neck; weakness in breathing muscles; slurred speech; difficulty swallowing; muscle cramps and twitches; weight loss; changes in cognition; being unable to regulate or display emotions appropriately, such as laughing or crying. […] Up to 50 out of 100 people (50%) with MND experience changes which affect their behaviour or cognition. This rises to 80 out of 100 people (80%) in the final stage of the disease.

• #1 Motor Neuron Diseases | National Institute of Neurological Disorders and Stroke

  https://www.ninds.nih.gov/health-information/disorders/motor-neuron-diseases

  Motor neuron diseases (MNDs) are a group of progressive neurological disorders that destroy motor neurons, the cells that control skeletal muscle activity such as walking, breathing, speaking, and swallowing. […] When signals from the lower motor neurons to the muscles are disrupted, the muscles begin to weaken and shrink in size (muscle atrophy or wasting). […] Over time, individuals with MNDs may lose the ability to walk or control other movements. […] Though there are several types of MNDs, they all cause muscle weakness that gradually worsens over time and can lead to physical disability. […] Weakness in muscles that control breathing can lead to respiratory insufficiency, a condition in which the lungs cannot properly take in oxygen or expel carbon dioxide. This is a feature of most MNDs. Symptoms may include breathlessness, shortness of breath that occurs while lying down, recurrent chest infections, disturbed sleep, poor concentration and/or memory, confusion, morning headaches, and fatigue.

• #1 How fast does Motor Neurone Disease progress?

  https://www.mndnsw.org.au/about-mnd/what-is-mnd/1813-how-fast-does-mnd-progress.html

  Progression of MND, also known as Lou Gehrigs disease and ALS, can vary depending on the site of symptom onset, the type of MND and from person-to-person. […] Each person diagnosed with MND will experience the disease differently. Symptoms may occur in a different order and may occur at a different rate. For some people, symptoms can progress overtime while others can experience more rapid progression. […] As MND is different from person-to-person, it is difficult to predict how MND will progress. […] ALS is the most common type of MND. Arms and legs are usually affected first. Symptoms may progress to other limbs or affect the muscles across the body. Muscles used for speech, swallowing and breathing are generally impacted later. However, for some people, breathing muscles may be impacted sooner.

• #1 Types of MND: ALS, PLS, PBP, PMA, MND/FTD | MND Australia

  https://www.mndaustralia.org.au/mnd-connect/what-is-mnd/types-of-mnd

  Motor neurone disease (MND) is an umbrella term for a group of diseases that affect motor neurons. In MND, the nerves weaken and start to die. This means messages can no longer travel between the brain and the muscles. Over time, with lack of use, muscles get weaker and waste away. The speed at which MND progresses varies from one person to another and also depends on which type of MND you have. […] ALS is life-limiting. Life expectancy is around two to five years after diagnosis. […] PBP is life-limiting. Life expectancy is between six months and three years from onset of symptoms. […] PMA is life-limiting but typically progresses slower than other types of MND. Life expectancy is usually more than five years. […] PLS progresses slowly and life expectancy can be 10-20 years or more. […] MND-FTD is life-limiting.

• #1 Mimics and chameleons in motor neurone disease | Practical Neurology

  https://pn.bmj.com/content/13/3/153

  The progression of motor neurone disease (MND) is currently irreversible, and the grave implications of diagnosis naturally fuels concern among neurologists over missing a potential mimic disorder. […] In the presence of a progressive pure motor disorder, signs such as florid fasciculations, bilateral tongue wasting, the split hand, head drop, emotionality, and cognitive or behavioural impairment carry high positive predictive value. […] MND is clinically heterogeneous, however, with some important chameleon-like presentations and considerable variation in clinical course. […] The most robust marker of prognosis is still the interval from symptom onset to definitive diagnosis, the average for which has remained approximately 1 year, around a third of the median survival from symptom onset.

• #1 What is MND – FightMND

  https://fightmnd.org.au/about/what-is-mnd/

  Motor neurone disease, or MND, is the name given to a group of diseases which impact the nerves known as motor neurons. Motor neurons are found in the brain and spinal cord. They send messages to activate the muscles in the body. […] With MND, messages from the motor neurons gradually stop reaching the muscles. This causes the muscles to weaken and, eventually, stop working. […] Motor neurone disease is aggressive and relentlessly progressive. While some people can live a long life with MND, the average life expectancy is 27 months from diagnosis. […] For those living with MND, the motor neurons in their body become damaged and die. With little, or no, motor neurons to activate them, the muscles begin to weaken and waste. Over time, suffers lose the ability to walk, talk, swallow and, breathe.

• #2 The Five Stages of Motor Neurone Disease | MND Care

  https://aspireuk.co.uk/the-five-stages-of-motor-neurone-disease/

  Motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS) or Lou Gehrigs disease, is a progressive and debilitating neurological condition that affects the nerve cells responsible for controlling voluntary muscle movements. […] As these motor neurons degenerate and die, individuals with MND experience gradual muscle weakness, paralysis, and eventually, respiratory failure, impacting their ability to walk, speak, swallow, and breathe. […] Motor neurone disease progresses through distinct stages, each presenting specific symptoms and challenges. The early stage typically involves subtle changes in muscle strength and coordination, while the middle stage sees more pronounced weakness and mobility limitations. […] In the late stage, individuals may experience severe muscle paralysis and respiratory difficulties. Understanding these stages is vital for tailoring care and support to meet the evolving needs of individuals with MND, ensuring optimal management and quality of life throughout the disease course.

• #2 HealthtalkFirst symptoms of MND | Real People. Real life experiences. | Healthtalk

  https://healthtalk.org/experiences/motor-neurone-disease-mnd/first-symptoms/

  Some people had first noticed weakness or stiffness in their arms or hands. Sometimes this was accompanied by aching or cramps. (MND is generally not a painful condition, but muscle stiffness can be uncomfortable at times). […] Fine hand movements such as turning a key or picking up small objects were difficult for some people. At first people were unsure what was happening and some put their symptoms down to being clumsy or feeling stressed. […] Several people first noticed problems with their legs or feet. They said their legs felt strangely ‘weak’, ‘floppy’ or ‘numb’, or ‘stiff’, ‘aching’ or ‘cramping’. Walking, exercising or climbing stairs became increasingly hard, and often people started to trip or fall. Again, they could not work out what was happening and some put it down to being clumsy or unfit, feeling stressed, getting older or having strained a muscle.

• #2 Motor Neurone Disease (MND) – First symptoms of MND

  https://hexi.ox.ac.uk/motor-neurone-disease-mnd/first-symptoms-of-mnd

  Some people had first noticed weakness or stiffness in their arms or hands. […] Fine hand movements such as turning a key or picking up small objects were difficult for some people. […] Several people first noticed problems with their legs or feet. They said their legs felt strangely 'weak’, 'floppy’ or 'numb’, or 'stiff’, 'aching’ or 'cramping’. Walking, exercising or climbing stairs became increasingly hard, and often people started to trip or fall. […] Some people developed 'foot drop’, where one foot drags or drops and gets in the way of walking. […] Some people we interviewed noticed their first symptoms around their throat or mouth. This is known as 'bulbar onset’ MND and affects around 25% of people with MND. Many people in this group experienced slurred speech; some noticed it themselves before anyone else did, while in some cases other family members first spotted something was wrong. […] A few people also had difficulties coughing or breathing, or had choking fits.

• #2 Early signs of MND | MND Association

  https://www.mndassociation.org/about-mnd/mnd-explained/early-signs-of-mnd

  If swallowing food, drink or saliva starts to cause coughing or gagging, it’s particularly important to get this checked. […] MND can affect breathing, but doesn’t usually happen as the first symptom. […] Emotional lability can affect some people with MND, but is also linked to other conditions. […] Up to half of those diagnosed with MND experience some changes to thinking and behaviour with MND, and the number affected increases as MND progresses.

• #2 The Five Stages of Motor Neurone Disease | MND Care

  https://aspireuk.co.uk/the-five-stages-of-motor-neurone-disease/

  Stage one of MND marks the early phase of the condition, characterised by subtle changes in muscle strength and coordination. Individuals may notice symptoms such as muscle weakness, twitching, or cramping, typically affecting one limb or a specific muscle group. […] In stage two, muscle weakness becomes more pronounced and widespread, affecting multiple limbs and muscle groups. […] In stage three, muscle weakness becomes severe and pervasive, affecting almost all muscle groups throughout the body. […] Beyond stage three of MND, individuals may progress through further stages of functional decline as the disease continues to advance. These later stages are characterised by increasingly severe muscle weakness, paralysis, and loss of functional independence. […] In this stage, individuals experience significant limitations in mobility and may require wheelchair assistance for mobility. […] The most advanced stage of MND, individuals in stage five are largely or completely immobile, with paralysis affecting most muscles of the body. […] Throughout these later stages of MND, individuals remain mentally alert and cognitively intact, despite the profound physical limitations.

• #2 Motor neurone disease (MND) | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd/

  As the condition progresses, it may become increasingly difficult to swallow (dysphagia). […] As MND becomes more advanced, more parts and functions of the body are affected. This can make you more likely to experience infections, like chest infections, which can cause your condition to get worse quicker. […] Speaking and swallowing can become increasingly difficult as MND progresses. […] Reduced swallowing can cause excess saliva. This can cause drooling. […] MND can cause changes in your ability to control your emotions. This is more likely when there’s weakness in the muscles that control speech and swallowing. […] Sometimes, people with MND have significant difficulties with: concentration, planning, communication, behavioural changes. […] Breathing might become less efficient as the nerves and muscles that help control the lungs become more damaged.

• #2 Progression of MND – MND NZ

  https://mnd.org.nz/about-mnd/what-is-mnd/progression-of-mnd/

  Trunk muscle weakness – can make it difficult to move around in bed and to sit unsupported. […] Emotions for some people emotional responses are affected and they may laugh inappropriately or cry involuntarily. […] Speech and swallowing some people may have difficulty with producing speech, in some cases the voice may become very weak and quiet, or it may be that there is difficulty with speaking the words clearly as the facial muscles weaken. Swallowing can also become difficult when eating and drinking. […] Breathing as the respiratory muscles weaken it may become more difficult to breath, and more difficult to complete day to day activities. […] Fatigue as it becomes more difficult to perform everyday tasks the energy required to carry out these tasks increases, and this creates more fatigue.

• #2 Motor Neurone Disease symptoms: 7 final stages signs | Express.co.uk

  https://www.express.co.uk/life-style/health/1521240/motor-neurone-disease-final-stage-symptoms-signs-evg

  Most people with MND will eventually need to use a wheelchair and will require support to undertake everyday tasks. […] Swallowing and talking can become increasingly difficult as the disease progresses. […] This can lead to choking episodes and so some may choose to have a gastronomy. […] Sometimes a person may lose their ability to speak completely but for most speech will become slurred or quiet. […] Reduced swallowing can cause increased saliva which sometimes leads to pooling and drooling of saliva. […] Even when MND patients are not tired, during the final stages of the condition, the disease can cause excessive yawning. […] During the advanced stages of MND, a persons ability to control their emotions can change. […] A common sign is when a person has sudden episodes of uncontrollable crying.

• #2 Motor neuron disease (MND): Types, causes, and more

  https://www.medicalnewstoday.com/articles/164342

  As the condition progresses, the early symptoms become more severe. People may also experience: muscle shrinkage; difficulty moving; joint pain; drooling, due to problems with swallowing; uncontrollable yawning, which can lead to jaw pain; changes in personality and emotional states; difficulty breathing. […] Eventually, a person with advanced ALS needs help moving, eating, breathing, or a combination of these. The disease can become life threatening, and breathing problems are the most common cause of death.

• #2 Motor neurone disease (MND) | Better Health Channel

  https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/motor-neurone-disease

  It was thought that MND only affected the nerve cells controlling the muscles that enable people to move, speak, breathe and swallow. However, it is now known that up to 50 per cent of people with MND can experience changes in cognition, language, behaviour and personality. Most people experience relatively mild changes. […] People who have MND may: develop generalised paralysis (paralysis of both sides of the body), lose speech and have difficulty swallowing, become breathless and experience sleep disturbance, experience mild cognitive and behavioural change, become increasingly dependent on others for all aspects of day-to-day activity. […] As MND progresses, the persons physical condition will change rapidly, and require increasing assistance from a carer. […] MND is still incurable, but it is not untreatable, as many symptoms can be managed. The drug riluzole available on the Pharmaceutical Benefits Scheme has been demonstrated in clinical trials to prolong survival by several months and may help people to remain in the milder phase of the disease for longer.

• #2 End of life care for someone with motor neurone disease | Marie Curie

  https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/motor-neurone-disease

  A person with MND will usually die between two to three years after diagnosis, but this can vary from person to person. Some people live many years after their diagnosis. […] People with MND may have the symptoms listed below at any stage of the disease. They become more likely and more severe in the final year of life. MND affects each person differently. So, symptoms of MND, progression and what to expect towards the end of life can vary. […] Widespread muscle wasting will affect a persons ability to move around and do daily tasks. MND Association estimate that 80 out of 100 (80%) of people with MND will need to use a wheelchair. […] Most people with MND will experience breathing problems. This is because MND affects the diaphragm and chest wall muscles which help them breathe. […] Weakness of the tongue, mouth, and throat muscles can lead to speech and swallowing problems. […] People with MND may experience pain, usually because of muscle cramps or tightness in their muscles (spasticity).

• #2 Motor neurone disease (MND)

  https://www.nhs.uk/conditions/motor-neurone-disease/

  Motor neurone disease (MND) gets worse over several months or years and is usually life-shortening. How quickly this happens varies from one person to another. […] As MND gets worse, you will have difficulty moving and you may need a wheelchair. You may also need a machine called a ventilator to help you breathe and assistive technology to help with speech. […] How long you can expect to live depends on your symptoms and the type of MND you have. Your care team will be able to speak to you about life expectancy if you want to know more. […] There’s currently no cure for motor neurone disease (MND). But there are treatments that can ease your symptoms and help you have the best quality of life possible. […] The type of treatment you’ll be offered will depend on your symptoms and the type of MND you have. You’ll probably need different treatments over time.

• #2 How fast does Motor Neurone Disease progress?

  https://www.mndnsw.org.au/about-mnd/what-is-mnd/1813-how-fast-does-mnd-progress.html

  PBP initially affects the bulbar region of the brain causing weakness to the muscles around the face, mouth and throat and may progress to the arms and legs later. […] PMA can begin in the arms, also known as flail arm or in the legs, also known as flail leg. This type of MND has more generalised muscle wasting and weakness with a slower rate of disease progression. […] PLS is a rare and slow progressing form of MND. […] MND is a life limiting illness and does shorten life expectancy. […] Although treatment options that slow progression of the disease are currently limited, there are ways to manage the symptoms of MND and to improve quality of life. […] Riluzole is a medication that can be prescribed by a neurologist. It may result in modest slowing of progression of MND by around 6-19 months.

• #2 Motor neurone disease: management of common symptoms – The Pharmaceutical Journal

  https://pharmaceutical-journal.com/article/ld/motor-neurone-disease-management-of-common-symptoms

  MND affects involuntary respiratory muscles, resulting in shortness of breath on exertion and poor cough reflex, leading to increased risk of respiratory tract infections and carbon dioxide retention. […] Patients will experience difficulty in lying flat, night-time waking, morning headaches and daytime fatigue. […] Invasive mechanical ventilation can prolong survival of patients with MND; however, there is no evidence showing improvement in QOL. […] Riluzole is currently the only drug licensed for the treatment of individuals with ALS and has been shown to slow down the progression of the disease.

• #2 Motor Neurone Disease (ALS): Causes, Symptoms, and Treatment

  https://patient.info/brain-nerves/motor-neurone-disease-leaflet

  Eating, drinking and swallowing become difficult when the tongue and the muscles around the mouth and throat become weak. […] You may become breathless on minimal exertion when the chest muscles become affected. […] MND does shorten life expectancy, and is a fatal illness. However, there is huge variation in how quickly ALS progresses, and it is different in each person who has it. […] Muscles weakened by ALS-MND do not recover. […] About 7 in 10 people with ALS-MND die within three years of the onset of symptoms. […] About 25 in 100 survive five years. […] About 5-10 in 100 survive 10 years or more.

• #2 Motor neuron disease: The last 12 months

  https://www1.racgp.org.au/ajgp/2022/may/the-last-12-months-of-motor-neuron-disease

  The most common form of MND, ALS, usually begins with limb weakness, although in approximately 20% of patients it has a bulbar onset (dysfunction of speech and swallowing). […] The mean period between diagnosis and death in MND is three years, with only 10% surviving longer than eight years. […] The progressive loss of muscle power in the upper and lower limbs has a profound effect on function. As the disease progresses, it can result in loss of mobility and falls. […] Speech and swallowing are invariably affected in the later stages of MND and are sometimes presenting features. […] Respiratory muscle involvement occurs early in MND and is associated with reduced survival. […] The anticipation of, and planning for, complications of MND is an important principle of management. […] The most common mode of death (85%) is respiratory failure.

• #2 What is MND – FightMND

  https://fightmnd.org.au/about/what-is-mnd/

  As MND weakens the muscles, individuals lose the ability to move, eventually becoming immobile. Despite this, most keep their mental clarity even as their physical abilities decline. […] Symptoms may include: Muscle twitches, cramps, stiffness or weakness. Difficulty with speech, breathing, swallowing or tasks requiring coordination. Tripping, stumbling or awkward movement. […] While symptoms and rate of disease progression vary between person to person, eventually, due to muscle wasting, individuals will not be able to: stand or walk, use their hands or arms, get in or out of bed on their own, swallow and chew. […] Because cognitive abilities are relatively intact, people with MND are largely aware of their progressive loss of function. This can lead to increased anxiety and depression. Individuals will also lose the ability to breathe on their own and must depend on ventilatory support for survival.

• #3 HealthtalkFirst symptoms of MND | Real People. Real life experiences. | Healthtalk

  https://healthtalk.org/experiences/motor-neurone-disease-mnd/first-symptoms/

  Some people we interviewed noticed their first symptoms around their throat or mouth. This is known as ‘bulbar onset’ MND and affects around 25% of people with MND (MND Association 2017). […] Many people in this group experienced slurred speech; some noticed it themselves before anyone else did, while in some cases other family members first spotted something was wrong. Other people often thought that the person was drunk. […] A few people also had difficulties coughing or breathing, or had choking fits. One woman said, ‘I had a weird thing where I woke and I couldn’t breathe in or out and that lasted about twenty minutes and made the most ghastly noise.’ Shallow breathing can result in tiredness even if the person has not noticed being short of breath. […] A few people diagnosed with MND will be told they have a less common form of the condition such as PLS (primary lateral sclerosis) or PMA (progressive muscular atrophy). PLS affects only the upper motor neurones, and PMA only the lower motor neurones. The first symptoms of these forms are very similar to other more common forms of the condition, so in the early stages it can be difficult to distinguish them. In PLS, legs, hands or speech can be affected as well as sense of steadiness in walking, and in PMA it is usually hands or legs. People with these forms generally live longer than people with more common forms of MND, but they share many of the same problems of increasing disability.

• #3 Progression of MND – MND NZ

  https://mnd.org.nz/about-mnd/what-is-mnd/progression-of-mnd/

  Cognitive function up to 50% of people experience mild cognitive changes, which can impact on the persons ability to plan and make decisions, with some mild behavioural and/or personality changes being noticeable. Approximately 15% of people develop signs of frontotemporal dementia, which causes more pronounced behavioural changes.

• #3 Motor neurone disease (MND) | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd/

  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. […] Some people with MND have other symptoms that aren’t directly caused by the condition, but are related to the stress of living with it. These might include depression, insomnia and anxiety.

• #3 How fast does Motor Neurone Disease progress?

  https://www.mndnsw.org.au/about-mnd/what-is-mnd/1813-how-fast-does-mnd-progress.html

  It is common for people living with MND to use non-invasive ventilation (NIV). […] Research suggests that multidisciplinary care has been shown to improve quality of life and prolong life. […] Maintaining weight and nutrition can have a positive impact on survival time for a person living with MND. […] The rate of disease progression varies depending on the site of symptom onset, the type of MND and from person-to-person. […] There are ways to manage the symptoms of MND to improve quality of life and to prolong life.

• #3 How Long Do You Live with Motor Neurone Disease? – NowPatient

  https://nowpatient.com/blog/how-long-do-you-live-with-motor-neurone-disease

  On average, individuals diagnosed with the most common form of MND, amyotrophic lateral sclerosis (ALS), have a life expectancy of 2 to 5 years from the onset of symptoms. However, it is crucial to understand that this is a general statistic and does not accurately reflect the diverse experiences of those living with the condition. […] Several factors can influence the life expectancy of individuals with motor neurone disease, including: Age at onset: Younger individuals diagnosed with MND tend to have a longer life expectancy compared to those diagnosed at an older age. Type of MND: As mentioned earlier, the specific form of MND can significantly impact the prognosis, with bulbar onset MND generally having a shorter life expectancy compared to other variants. Respiratory function: The preservation of respiratory function is a critical factor of life expectancy, as respiratory failure is a leading cause of mortality in MND. Access to supportive care: The use of assistive devices, respiratory support, and specialised therapies, can significantly improve the quality of life and potentially extend the lifespan of individuals living with MND.

• #3 The latest in motor neurone disease – Pavilion Health Today

  https://pavilionhealthtoday.com/gm/motor-neurone-disease-a-clinical-overview/

  The neuronal cell bodies send information to the nerve terminals via a mechanism of axonal transport. This mechanism depends on a system of transport proteins that may be dysfunctional in ALS. […] A multidisciplinary approach to patient care lies at the heart of the management of MND and has been reported to significantly improve patient survival and quality of life. […] Respiratory support interventions offer the largest survival and quality of life benefit currently available to the patients with MND. […] Patients with MND are prone to malnutrition due to dysphagia and a higher resting metabolic rate. […] There is evidence that good symptomatic care improves longevity and maintains quality of life. […] Patients should be linked into a palliative care team. There is substantial evidence that palliative care interventions improve quality of life for both patients and carers.

• #3 What is MND? | MND Association

  https://www.mndassociation.org/about-mnd/mnd-explained/what-is-mnd

  speech and communication problems, affecting how you speak, gesture and show expression […] swallowing difficulties, affecting how you eat and drink […] saliva problems, where thin saliva pools in the mouth or saliva becomes thick and sticky […] weakened coughing, which makes it harder to clear the throat […] breathing problems, which can lead to breathlessness and fatigue […] emotional lability, with inappropriate emotional responses, such as laughing when feeling sad […] changes to thinking and behaviour, for about half of those diagnosed with MND and this number increases in the later stages. […] Changes to thinking and behaviour are usually mild, but a small number of people with MND may develop frontotemporal dementia, which is more severe and needs additional care support.

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• #4 ALS – Wikipedia

  https://en.wikipedia.org/wiki/ALS

  Difficulties with chewing and swallowing make eating very difficult (dysphagia) and increase the risk of choking or of aspirating food into the lungs. In later stages of the disorder, aspiration pneumonia can develop, and maintaining a healthy weight can become a significant problem that may require the insertion of a feeding tube. As the diaphragm and intercostal muscles of the rib cage that support breathing weaken, measures of lung function such as vital capacity and inspiratory pressure diminish. Individuals affected by the disorder may ultimately lose the ability to initiate and control all voluntary movement, known as locked-in syndrome. […] Although respiratory support using non-invasive ventilation can ease problems with breathing and prolong survival, it does not affect the progression rate of ALS. Most people with ALS die between two and four years after the diagnosis. The most common cause of death among people with ALS is respiratory failure, often accelerated by pneumonia.

• #6 Motor Neurone Disease (MND): Causes and Treatment | Doctor

  https://patient.info/doctor/motor-neurone-disease-pro

  Chronic neuromuscular respiratory failure is the most common cause of morbidity and mortality, due to progressive diaphragm weakness. […] The following prognostic factors are associated with shorter survival if they are present at diagnosis: […] Speech and swallowing problems (bulbar presentation). […] Weight loss. […] Poor respiratory function. […] Older age. […] Lower Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS or ALSFRS-R) score. […] Shorter time from first developing symptoms to time of diagnosis. […] There appears to be a small subgroup of patients (5-10%) surviving for a decade or more.

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