How Long Do You Live With Als – ALS, also known as amyotrophic lateral sclerosis or Lou Gehrig's disease, is a progressive condition with no cure. On average, those diagnosed with ALS do not survive more than a few years. However, some people can live again. In fact, Stephen Hawking was diagnosed at the age of 21 and is now in his 70s – of course, the case is very rare.
ALS causes the muscles in a person's body to weaken, causing difficulty in swallowing and speaking, as well as difficulty in breathing. A person with ALS may also experience changes in thinking and emotions.
How Long Do You Live With Als
Symptoms of an individual from ALS can vary between different patients. The speed of progress can also vary widely between different people. As a result, it can be a real challenge for doctors to be able to predict exactly what a particular person will experience during the illness. People experience ALS at different rates of progression. Here we will explore some of the factors that can influence how quickly the disease develops.
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The disease often begins with muscle weakness. According to the ALS association, muscle weakness is actually the first sign of the disease in 60 percent of patients. This can manifest in the legs or obliques, and it can affect both sides to different levels or severity. Symptoms include difficulty buttoning clothes, tripping and falling objects. Muscles may twitch, as well as spasm and become stiff. Eventually they will waste. Over the course of months to years, in most cases, the weakness spreads throughout the body until all limbs are paralyzed.
For each person, this progress occurs at a steady pace. However, the overall rate of progression can still vary from one patient to the next.
At any point in a person's experience with ALS, they may experience difficulty swallowing or speaking. However, these symptoms tend to be more pronounced later in the course of the disease. In the form of ALS known as bulbar-onset ALS, these symptoms tend to appear early. This is also associated with a shorter survival rate. Speech may sound soft, slurred or thick. People can also drool. If swallowed, the person may release liquid from the nose, and solids may stick to the throat. In this situation, there is a risk of food entering the lungs and causing pneumonia.
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Breathing difficulties cause symptoms such as fatigue, shortness of breath, sleep disturbances and morning headaches. This can happen at any time while ALS is working its way through the patient's body. However, these symptoms tend to worsen over time and are usually the cause of the patient's death. For some, difficulty breathing is the first sign of ALS — which, like difficulty speaking and swallowing, is an indicator of shorter survival.
According to the ALS Association, a person with ALS has a life expectancy of 2 to 5 years from diagnosis. However, 10 percent to 20 percent of ALS patients live a long life. Some believe that people diagnosed with the condition at a younger age can live longer – which may explain Stephen Hawking's miraculous survival into his 70s despite having the disease since the age of 21.
About half of patients living with ALS experience problems with thinking. About 5 to 10 percent also suffer from a more serious problem known as frontotemporal dementia. Both of these are associated with the disease, so the progression is faster through the body. A number of other factors that may have an impact on the development of ALS are being investigated. This includes improving nutritional care, respiratory care and psychological support.
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This is what people tend to experience during the development of ALS. Of course, no one experiences ALS the same way, but here are some general guidelines about what most people go through.
In the early stages of ALS progression, patients tend to have weak muscles. They can be weak and soft, or they can also be stiff, tight and spastic. It is common to experience twitching and muscle cramps. Loss of muscle mass is also common. These symptoms may occur in one area of the body, or mild symptoms may affect more than one part of the body. People may be tired, have poor balance, slur their words, have a weak grip or stumble when walking. This stage often occurs before a diagnosis is made.
In the intermediate stages of ALS, the symptoms in the muscles become more widespread. Some muscles may be paralyzed, while others are unaffected or simply weak. Unused muscles can cause contractures, where the joints become painful, stiff and even deformed. If a person falls, they may not be able to get back up on their own. They will no longer be able to drive, and will experience weakness when swallowing, as well as increased problems controlling saliva and eating. Weakness of the respiratory muscles can cause shortness of breath, especially when lying down. Some people experience uncontrollable and random fits of crying or laughing.
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In the final stages of ALS, most voluntary muscles are paralyzed. The muscles that help move air in and out of the lungs are severely compromised. Mobility is severely restricted at this time. People will need help with most of their personal daily functions. Poor breathing can lead to fatigue, headaches, unclear thinking and increased susceptibility to pneumonia. Respiratory insufficiency is the leading cause of death for ALS patients. Speech, drinking and eating through the mouth, and much more, may not be possible.
Most ALS deaths are due to respiratory failure, which occurs over several months. Medication can help relieve fear, anxiety and discomfort. Family members often described his death as peaceful.
Less common causes of death from ALS include malnutrition from swallowing difficulties, pulmonary embolism (blockage of arteries in the lungs), abnormalities in the heart's electrical pacing system, and pneumonia from food or fluid in the lungs.
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Previous post ALS and the Military: What's the Connection? Next post Why is ALS called Lou Gehrig's disease? Editor's note: Renowned theoretical physicist Stephen Hawking died on March 14, 2018, aged 76. This story, originally published on his 70th birthday on January 7, 2012, now resurfaces to explain how he beat the odds and lived so long with the disease amyotrophic lateral sclerosis (ALS).
Stephen Hawking turned 70 on Sunday, beating the odds of a terrible diagnosis by nearly half a century.
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Prominent theoretical physicists have helped bring ideas about black holes and quantum gravity to a wide audience. For much of his time in the public eye, he has been confined to a wheelchair by a form of the motor neurone disease amyotrophic lateral sclerosis (ALS). And since 1985, he has had to speak through his trademark computer system – which he operates with his cheek – and has round-the-clock care.
But his illness hardly seemed to slow him down. Hawking spent 30 years as a professor of mathematics at Cambridge University. And he is now director of research at the school's Center for Theoretical Cosmology.
But like his mind, Hawking's disease appears to be unique. Most patients with ALS – also known as Lou Gehrig's disease, for the famous baseball player who succumbed to the disease – are diagnosed after the age of 50 and die within five years of diagnosis. Hawking's condition was first diagnosed when he was 21 years old, and he was not expected to see his 25th birthday.
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Why has Hawking lived with this disease for so long when so many other people have died soon after diagnosis? We spoke with Leo McCluskey, professor of neurology and medical director of the ALS Center at the University of Pennsylvania, to find out more about the disease and why it saved Hawking and his amazing brain.
ALS, which is also known as motor neurone disease – and corresponds to Lou Gehrig's disease in the US – is a neurodegenerative disease. Each muscle is controlled by motor neurons located in the brain in the frontal lobe. These are electrically controlled and synaptically connected to motor neurons located lower in the brain – as well as motor neurons located in the spinal cord. Those in the brain are called upper motor neurons, and those in the spinal cord are called lower motor neurons. The disease causes weakness of either upper motor neurons or lower motor neurons or both.
It has long been known that there are variants of ALS. One is called progressive muscular atrophy, or PMA. It appears to be an isolated disease of the lower motor neurons. However, pathologically, if you do an autopsy, they will have evidence of deterioration of the upper motor neurons.
How Did Stephen Hawking Live So Long With Als?
There is also primary lateral sclerosis – PLS – and clinically it looks like one
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