ALS Progression Timeline

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 longer. In fact, Stephen Hawking was diagnosed at the age of 21 and is now in his 70s – of course, his is an extremely rare case.

ALS causes the muscles in a person’s body to weaken and results in trouble with swallowing and speaking, as well as a patient’s experiencing difficulty breathing. A person with ALS may also experience changes in their thinking and emotions.

An individual’s symptoms from ALS may vary between different patients. The rate of progression also can vary widely between different people. As a result, it can be a real challenge for doctors to be able to predict exactly what a specific person will experience through the course of their disease. People experience ALS at different rates of progression. Here we will explore some factors that can influence how quickly the disease will progress.

Muscle Weakness

The disease often begins with muscle weakness. According to the ALS association, in fact, muscle weakness is the first sign of the disease in 60 percent of patients. This may manifest in the feet or the cants, and it may affect both sides to a different degree or severity. Symptoms include difficulty in buttoning clothes, tripping, and dropping objects. The muscles might twitch, as well as cramp and become stiff. Ultimately, they will waste away. Over the course of months to years, in the majority of situations, the weakness spreads throughout the body until all of the person’s limbs are paralysed.

For each person, this progression occurs at a steady rate. However, the overall rate of progression can still be different from one patient to the next.

Difficulty Swallowing and Speaking

At any point in a person’s experience with ALS, they can experience difficulty with swallowing or speaking. However, these symptoms tend to become more pronounced later in the progression of the disease. In the form of ALS known as bulbar-onset ALS, these symptoms tend to appear in the beginning. This is also associated with a shorter rate of survival. Speech may come out sounding soft, slurred, or thick. The person may also drool. When swallowing, the person may have liquid come out of their nose, and solids may stick in their throat. In this situation, there is a risk of food getting into their lungs and causing pneumonia.

Respiratory Symptoms

Trouble breathing results in symptoms like fatigue, shortness of breath, disturbed sleep, and headaches in the morning. These can occur at any point while ALS makes it course through a patient’s body. These symptoms, however, tend to become worse over time and generally are the reason the patient passes away. For some, difficulty breathing is the first sign of ALS – which, like difficulty speaking and swallowing, is an indicator of shorter survival.

Other Factors

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 have longer lives. Some suspect that those who are diagnosed with the condition at a younger age may have longer lives – 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 their thinking. About 5 to 10 percent also suffer from a more severe problem known as frontotemporal dementia. Both of these are associated with the disease making its progression more quickly through the body. A number of other factors that could have an impact on ALS progression are being studied. This includes improves nutritional care, respiratory care, and psychological support.

The Stages of ALS from Onset to Death

The following are what people tend to experience during their progression of ALS. Of course, no two people experience ALS the exact same way, but here are some general guidelines of what most people tend to go through.

ALS Progression Timeline Chart

Early Stages of ALS

In the early stages of ALS progression, patients tend to have weak muscles. They might be weak and soft, or they could also be stiff, tight, and spastic. It’s common to experience twitching and muscle cramping. Loss of muscle bulk is also common. These symptoms may occur in only a single region of the body, or mild symptoms could affect more than one part of the body. The person might be fatigued, have poor balance, slur their words, have a weak grip, or trip when walking. This stage often occurs before a diagnosis is made.

Middle Stages of ALS

In the middle stages of ALS, the symptoms in the muscles become more widespread. Some muscles might become paralysed, while others are unaffected or simply weakened. Unused muscles can result in contractures, where the joints become painful, rigid, and even deformed. If a person falls, they may not be able to get back up on their own. They are no longer able to drive, and will experience weakness in swallowing, as well as increased difficulty in managing saliva and eating. Weakness in the breathing muscles can result in respiratory insufficiency, especially in lying down. Some people experience uncontrollable and random crying or laughing bouts.

Late Stages of ALS

By the final stages of ALS, most voluntary muscles have been paralysed. The muscles that aid in moving air in and out of the person’s lungs are severely compromised. Mobility, by this point, is severely limited. The person will need help in most of their personal daily functions. Poor respiration can result in fatigue, headaches, fuzzy thinking, and increased susceptibility to pneumonia. Respiratory insufficiency is the primary cause of death for those with ALS. Speech, drinking and eating by the mouth, and more, may not be possible.

Most ALS deaths result from respiratory failure, something that happens over the course of several months. Medications can help in relieving fear, anxiety, and discomfort. Family members often describe the death as peaceful.

Less common causes of ALS deaths include malnutrition from swallowing difficulties, pulmonary embolism (an artery blockage in the lungs), abnormalities in the heart’s electrical pacing system, and pneumonia resulting from food or fluid in the lungs.