How Long Can You Live With ALS?

Amyotrophic Lateral Sclerosis (ALS) Life Expectancy

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The life expectancy for someone with amyotrophic lateral sclerosis (ALS) varies, but tends to range from two to five years. Some people with ALS do live much longer, however. About 10% of those with the condition will live 10 years, and 5% will live for 20 or more years.

There is no cure for ALS, but there are some treatments that may slow the loss of physical function and improve the quality of life for people impacted by it.

Ways to Improve Life Expectancy with Lou Gehrig’s Disease
Verywell / Melissa Ling

Life Expectancy with ALS

Unfortunately, the prognosis for ALS is poor. ALS is a progressive condition that is terminal within five years for 80% of the people impacted by it.

ALS affects the nerves that control movement. As it progresses, people with ALS are unable to move their arms and legs to walk or get out of bed, and they eventually lose the ability to talk, eat, and breathe on their own.

How ALS Causes Death

Death from ALS is usually caused by respiratory failure, due to the muscles that allow for breathing becoming paralyzed. Both non-invasive and invasive ventilation can ease breathing, but ALS will continue to progress.

How Long Can You Live With ALS?

According to the ALS Association, the average life expectancy of a person with ALS is three years. However, it varies greatly:

  • 20% live five years or more.
  • 10% live 10 or more years.
  • 5% will live for more than 20 years.

Astrophysicist Stephen Hawking lived with ALS for longer than any other known person. He was diagnosed in 1963 and survived for 55 years.

How Quickly Does ALS Progress?

For most people, ALS progresses quickly, over a period of 2 to 5 years. This is not true for everyone, though. Some people experience a slower progression and a longer survival time. 

ALS does not progress according to a predictable timeline. People with ALS will experience an increase in muscle weakness, which will eventually include problems speaking, breathing, and swallowing. Weight loss is also common. 

The final stage of ALS occurs when the body becomes completely paralyzed. People in this stage can't breathe, speak, or swallow and require a ventilator and a feeding tube. During this stage, people with ALS are usually given hospice care and aren't expected to survive more than 6 months.

ALS is always fatal. Most of the time, death occurs because of respiratory failure. People in the final stage of ALS are typically given medication to ease discomfort and emotional distress.

Complications

Complications can arise from the neurological damage of the disease process or from treatments:

  • Choking, due to impaired swallowing
  • Shortness of breath, due to the atrophy of breathing muscles
  • Risk of falling, due to weakness and atrophy of the muscles
  • Nutritional deficiencies, due to trouble eating
  • Infections, from medical devices like ventilators, feeding tubes, and urinary catheters
  • Anxiety and depression, related to an unpredictable and terminal illness
  • Inappropriate emotional outbursts, related to damage to that part of the brain
  • Cognitive changes and dementia

Treatments

While there is no cure for ALS or ways to stop the progression of the disease completely, there are some treatments that may improve life expectancy and quality of life. These include:

Medication

Rilutek (riluzole) has been in use since 1995 and has been shown in randomized double-blind clinical trials to prolong life expectancy for approximately two to three months, but it did not relieve symptoms. This medication also goes by the name of Tiglutek when in a liquid form and Exservan when used as an oral film, both of which are easier for people with problems swallowing.

Radicava (edaravone) is a free-radical scavenger medication that was approved in 2017. In the phase 3 trial that led to its licensure, it lessened the decline in physical functioning by 33% in a very select group of people who were in the study. However, researchers caution that those results may not be generalizable to everyone with ALS.

Nuedexta (dextromethorphan hydrobromide/quinidine sulfate) may help improve bulbar motor function (important for speech and swallowing). In particular, it may help to better speech control with fewer pauses, but more study is needed.

Noninvasive Ventilation

The use of noninvasive ventilation (NIV) is a cornerstone of ALS treatment. The primary mode of NIV is positive-pressure ventilation, which is basically breathing through a mask that fits over the mouth and nose.

Ultimately, more invasive ventilation through a breathing tube down the throat or via a hole in the front of the neck (tracheostomy) may become necessary.

Because ventilation ultimately becomes a life-support technology in ALS patients, it can interfere with the ability to die naturally. People with ALS may want to decide at the outset when to withdraw mechanical ventilation, while they have the physical and mental capacity to craft advance directives.

Diaphragmatic Pacing

The FDA has approved the NeuRx diaphragm pacing system, which uses implanted electrodes to cause the diaphragm to contract and create a breath.

This device is also used for people with spinal cord injuries. If severe respiratory failure has not yet occurred, this device allows people to breathe without a ventilator for up to four hours per day.

Even though the FDA has approved its use, some healthcare providers question its usefulness for ALS,with some specialists even stating it can be harmful.

Percutaneous Endoscopic Gastronomy (PEG)

A feeding tube is placed into the stomach and leads out of the body through the abdominal wall. Although studies have failed to show a consistent impact on survival time, it is considered to be a safe nutritional protocol in patients with a functional gastrointestinal system.

Because a PEG tube bypasses the mouth and throat, the risk of choking and inhaling food and medications into the lungs is minimized. Liquid tube feedings, medications, and water can all be given by PEG tube.

Improving Quality of Life

Physical therapists can help a person with ALS to do physical exercise and stretching that strengthens functioning muscles, decreases spasticity, and doesn't overwork their muscles, with the goal of preserving the strength and flexibility they still have.

Occupational therapists can help with assistive devices that improve functionality and increase independence, such as ramps, braces, walkers, and wheelchairs.

Speech therapists can help teach adaptive strategies to speak more loudly and more clearly. As speech deteriorates, there are adaptive devices like computer-based speech synthesizers using eye tracking technology and even brain-computer interfaces that can control equipment like wheelchairs using only brain activity.

Hopeful Research for ALS

Many researchers and clinical trials are working on trying to find treatments for ALS. Therapies on the horizon involve stem cells that could help to protect remaining motor neurons, plus medications that may treat possible genetic variations that contribute to ALS.

A Word From Verywell

Advances have been made in recent years in the support and treatment for ALS. Researchers have also made advances in understanding the disease process of ALS, which will hopefully lead to new treatments.

Educating yourself on treatment and care options for ALS can help you understand this difficult and complicated diagnosis. A specialized multidisciplinary treatment team for ALS may be most helpful.

Talk to your healthcare provider about what you can do to help the person with ALS live more comfortably, and realize that caregivers will also need a lot of support navigating this difficult illness.

Frequently Asked Questions

  • What are ALS symptoms?

    ALS symptoms in early stages of the disease include:

    • Muscle twitching in the arm, leg, shoulder, or tongue
    • Muscle cramps, as well as tight or stiff muscles
    • Muscle weakness affecting the arm, leg, neck, or diaphragm
    • Slurred and nasal speech
    • Difficulty in chewing and swallowing

    Early signs of ALS often appear in one hand or arm. This starts as muscle weakness, but can eventually cause trouble with lifting things or having difficulty using the hands.

  • What is bulbar ALS?

    Bulbar ALS refers to the disease causing difficulty in speech and swallowing. When these are the first symptoms to appear, it is called "bulbar onset" ALS. This type of ALS usually progresses quickly, with an average life expectancy of less than two years.

  • What is the typical age of onset of ALS?

    ALS most commonly appears between the ages of 40 and 70 years old. The average age of onset is 55. However, uncommonly, the disease can begin as early as 20 to 30 years old.

  • Is there treatment for Lou Gehrig's disease?

    The primary goal of treatment for Lou Gehrig's disease, or ALS, is to improve life expectancy or quality of life. This can involve medication, non-invasive ventilation (assisted breathing using a mask), a feeding tube, physical therapy, and using assistive devices such as braces or a wheelchair. While there is not a cure for ALS, a drug called riluzole is believed to somewhat slow the disease's progression.

  • Do women get ALS?

    Women can get ALS, but the disease is 20% more common in men. The rate of ALS incidence becomes equal at older ages.

  • Does your age affect ALS prognosis?

    People who are diagnosed with ALS at a younger age tend to live longer than those diagnosed when they are older. One study found that those diagnosed before the age of 50 lived around 10 months longer than those diagnosed at the age of 50 to 59. In general, the length of survival declines as the age at diagnosis goes up. 

13 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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Additional Reading
  • Pinto S, Carvalho MD. Breathing new life into treatment advances for respiratory failure in amyotrophic lateral sclerosis patients. Neurodegenerative Disease Management. 2014;4(1):83-102. doi:10.2217/nmt.13.74.

By Mark Stibich, PhD
Mark Stibich, PhD, FIDSA, is a behavior change expert with experience helping individuals make lasting lifestyle improvements.