The average life span after an ALS diagnosis is 5 years or less, but some people manage to live for much longer.

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a neurological disease that affects the neurons (nerve cells) in the brain and spinal cord.

It can cause rapid deterioration of motor functions, ranging from walking to breathing. However, many thinking skills remain intact until the end.

Life expectancy with ALS can be difficult to predict as each person’s experience with the disease is unique. However, once symptoms develop, it’s often a matter of just a few years before respiratory failure or other conditions bring about a premature death.

Still, some people manage to live for 20 years or longer. Keep reading to learn more.

The average life expectancy after ALS symptoms develop is 2 to 5 years. However, the longest possible life expectancy may be much longer. Scientist and author Stephen Hawking died at age 76, about 55 years after receiving an ALS diagnosis.

Many people with ALS far exceed the average life expectancy. The ALS Association reports that about 10% of people diagnosed with ALS live at least 10 more years, while about 5% live at least 20 years or longer.

While there’s no predictable timeline for how ALS progresses, experts generally group the physical effects of the disease into three distinct stages.

Early stage ALS

Muscles may weaken and become soft or become tight and spastic. Muscle mass tends to diminish (atrophy), and twitching can sometimes develop in various muscle groups. These symptoms may affect muscles throughout the body or affect one set of muscles at first.

Early stage ALS may also lead to problems with balance, grip strength, and overall coordination. Some of these early symptoms are often what lead to someone getting an evaluation and diagnosis. This is also the stage when the use of a cane or other assistive devices may begin.

Middle stage ALS

More muscle groups may be affected, and some muscles may become paralyzed. Muscle twitching (fasciculations) become more common. A doctor might advise you to discontinue driving.

Swallowing may become more problematic. Breathing, especially while lying down, may become more difficult.

Uncontrolled laughing or crying, a condition known as pseudobulbar affect, can sometimes develop. Antidepressants or anti-anxiety medications may help you manage the psychological effects.

Late stage ALS

You’ll experience paralysis or dysfunction in most voluntary muscles, such as those involved in walking and manual tasks like handling cutlery or buttoning a shirt. You may require a feeding tube to eat and drink. Speech may also be impossible.

Reliance on a caregiver 24 hours per day is usually necessary.

Your outlook with ALS can depend, in part, on the type of ALS you have. Doctors often classify ALS by family history or which parts of the body it affects first.

Most people with ALS don’t have a family history of it. But when ALS does run in families, it can often be a more aggressive course. This is because some of the genes associated with familial forms of ALS are linked to a less favorable outlook, according to 2022 research.

Your outlook with ALS may also be less favorable depending on which body parts are affected. For example, research links bulbar onset ALS, which first involves the muscles of the head and neck (including the swallowing muscles), with faster decline, shorter survival, and reduced quality of life.

While there’s no cure for ALS, treatments can help manage certain symptoms. Some medications can help slow damage to your neurons, which may help extend life and slow disease progression. These medications include:

  • riluzole (Rilutek)
  • edaravone (Radicava)
  • tofersen (Qalsody)

The ALS Association suggests that one of the best ways you can improve your life expectancy with ALS is to rely on an interdisciplinary team of medical specialists to manage your care. Your ALS healthcare team should include:

Managing symptoms and slowing the progression of the disease is key to improving your quality of life with ALS. Getting expert medical care is crucial, but so, too, is looking after your mental health.

You may consider joining an ALS support group, either in-person or online. These groups can provide helpful strategies for managing symptoms and everyday challenges, as well as offer moral support when you need a boost.

Dietary changes may also help slow disease progression. A 2021 research review suggests that diets rich in antioxidant and anti-inflammatory compounds may be beneficial, but more research is necessary.

Research also suggests that therapeutic physical exercise can improve the quality of life in people with ALS.

Can you live a full life with ALS?

ALS typically affects your life expectancy and will present several significant physical challenges. Still, some people manage to live for several years with the condition.

Working with a healthcare team can help you manage symptoms and overcome or adapt to some challenges.

What are the odds of beating ALS?

Until a cure emerges, ALS remains a fatal disease. Rather than “beat” ALS, you can hope to slow the progression of the disease and reduce the effect of ALS on your quality of life.

Can you have ALS for years and not know it?

For people who experience early mild symptoms that don’t worsen quickly, it’s possible to have ALS and know it right away. Research suggests that it can take 10 to 16 months on average to receive a diagnosis after the onset of symptoms.

Researchers are active around the world, seeking a cure and better treatments for ALS. Until those breakthroughs arrive, an ALS diagnosis usually means a life expectancy of a few years, though 10 or 20 years is not out of the question.

Rather than focus too much on how many years you have left, consider trying to make the most of each day.