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ALS Life Expectancy and Treatment Options

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Amyotrophic lateral sclerosis, or ALS, can be a devastating diagnosis for the whole family. Also known as Lou Gehrig’s disease because of the famous baseball player who died from it, ALS is a progressive, neurodegenerative disease that attacks the body’s muscles, impacting the ability to move, speak, eat, and breathe.

Currently, there’s no cure for ALS and the prognosis is usually not very positive. But every person is different, and it’s possible to go on living many years with the disease. Read on to learn more about what research says about life expectancy with ALS, as well as symptoms, causes, and treatment options, including how palliative and hospice care can help.

Are you or a loved one living with a
chronic or terminal illness?

The Sage Family of Companies is here to help.

Are you or a loved
one living with a
chronic or terminal illness?

The Sage Family
of Companies
is here to help.

What Is ALS?

ALS is a neurodegenerative disease that destroys nerve cells in the brain and spinal cord. These nerve cells, called motor neurons, are responsible for movement in the arms, legs, chest, throat, and mouth. As the disease advances, it results in loss of muscle control and voluntary movement.

ALS is progressive in nature, meaning that it worsens over time. In addition to movement, eventually, this motor neuron disease affects the muscles that control speaking, eating, and breathing. This ultimately causes death. However, ALS doesn’t affect mental functioning or the senses.

ALS Life Expectancy After Diagnosis

There’s no way to tell exactly when a person will die from ALS, and life expectancy varies. According to research estimates, about half of patients with ALS die within two to five years from when symptoms first occur. However, it’s possible to go on living for years and even decades with ALS. 

According to the ALS Association, about 10 percent of people with the disease live for 10 years, and 5 percent survive for 20 years or longer. Scientist Stephen Hawking famously lived for more than 50 years after being diagnosed with the disease in his early 20s.

ALS Symptoms

ALS symptoms can look different from person to person. Typically, early symptoms of ALS involve muscle weakness that worsens over time, particularly in the hands, arms, and legs.

As ALS progresses, common symptoms include:

  • Twitching or cramping of the muscles
  • Difficulty walking or completing daily tasks
  • Tripping and falling
  • Hand weakness that leads to clumsiness or dropping things 
  • Inability to use the arms or legs
  • Persistent fatigue
  • Uncontrollable crying, laughing, or yawning
  • Slow or slurred speech

In more advanced stages of ALS, symptoms can include:

  • Difficulty breathing
  • Difficulty chewing and swallowing
  • Inability to speak
  • Paralysis
Empowering ALS Mobility: An image of a patient using a body stabilizing device to enhance mobility and independence in the face of challenges.
Empowering ALS Mobility: An image of a patient using a body stabilizing device to enhance mobility and independence in the face of challenges.

ALS Causes 

One cause of ALS is genetics. About 10 percent of those with ALS carry a gene passed down from their family that makes them more susceptible to the disease. In cases where there’s no family history of the disease, the cause is unknown, though researchers are working to better understand potential risk factors.

The odds of being diagnosed with ALS increase with age. Most often, ALS occurs in older adults between 60 to 85, though much younger people can develop ALS. Environmental factors such as smoking and exposure to lead and other toxins also appear to be linked to an increased risk of ALS.

ALS Treatment Options 

Unfortunately, there’s no cure for ALS. However, treatments are available to help ease symptoms and slow the progression of the disease. These include:

  • Medications, including ​​sodium phenylbutyrate-taurursodiol (Relyvrio), which the U.S. Food & Drug Administration approved in 2022. This drug has been shown to slow the rate of decline from ALS.
  • Physical therapy, which can help relieve discomfort from muscle weakness and cramps and help you stay mobile.
  • Speech therapy, which can provide strategies to help you continue to speak and eat for as long as possible.
  • Nutritional guidance from a registered dietitian who can make recommendations for foods that are easy to swallow and can help make sure you’re eating and healthy diet.
  • Occupational therapy, which can help make your environment more conducive to keeping your independence, despite symptoms of ALS. This may include modifying your home so it’s easier for you to move around, and providing equipment like grab bars and reach devices to help you carry out daily tasks like eating, bathing, and dressing on your own.

Palliative Care Can Help

If you or a loved one have been diagnosed with ALS, you may want to consider palliative care. This is a specialized form of care for people living with chronic illnesses that aims to provide relief from symptoms and improve quality of life.

Despite common misconceptions, palliative care is not the same as end-of-life care. Rather, palliative care can be given at any stage of a disease, and is often recommended at the time of diagnosis.

With palliative care, you or your loved one will continue to receive treatments meant to slow the progression of ALS. In conjunction with these treatments, your palliative care team, which may include doctors, nurses, specialists, home health aids, counselors, dietitians, and spiritual advisors, will work together to provide comprehensive care of your whole self.

Treatments and therapies will focus on not only your physical health but also your emotional, mental, social, and if desired, spiritual needs.

Are you or a loved one living with a
chronic or terminal illness?

The Sage Family of Companies is here to help.

Are you or a loved
one living with a
chronic or terminal illness?

The Sage Family
of Companies
is here to help.

When to Consider Hospice Care

Unlike palliative care, hospice care is end-of-life care. When you enter hospice care, treatments intended to slow the progression of ALS are stopped, and the focus of care transitions to comfort as the end of life approaches.

This can be an extremely difficult time for both the patient and the family, and your hospice care team is specially trained to provide the necessary support. In addition to mental health counseling for the patient, grief counseling and access to support groups are available for loved ones.

Typically, a person with ALS is eligible for hospice care when their doctor estimates that they have six months or less to live, should the disease take its natural course.

ALS Life Expectancy FAQ

Here are some of the most frequently asked questions about amyotrophic lateral sclerosis life expectancy.

How Quickly Does ALS Usually Progress?

While ALS can progress at different speeds, for most, the disease advances quickly. The majority of patients reach end-stage ALS within two to five years, though it’s possible to live with ALS for 20 years or longer. Certain prescription medications have been shown to slow the progression of ALS.

What Causes Death in ALS Patients?

ALS destroys the nerve cells in the brain and spinal cord responsible for movement in the arms, legs, chest, throat, and mouth. Over time, the ALS sufferer loses the ability to move, speak, eat, and breathe, which can lead to death in a number of ways, though respiratory failure is the most common.

Other common causes of death from ALS are pneumonia infection and cardiac issues. 

Is ALS Always Fatal?

ALS is a fatal disease. However, there’s no way to know exactly when or how someone will die from ALS. The average life expectancy with ALS for most people is two to five years from the start of symptoms, but some people go on to live 10 or even 20 years after diagnosis, or even longer. 

Summary

While statistics for life expectancy with ALS are certainly discouraging, remember that there’s no way to know exactly how long you or your loved one may live with the disease. Some people with ALS go on to live five, 10, or even 20 years or longer with ALS.

There are treatments available that can help slow the progression of the disease and allow you to retain independence for as long as possible. And rest assured that your palliative and/or hospice teams will work together to make sure you or your loved one are as comfortable as possible.

The Sage Family of Companies is here to answer any questions you may have.

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Colorado

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Sage Hospice
Arizona

Sage Hospice
Tucson

Elevation Hospice
Colorado

Elevation Hospice
Utah

Agape Hospice Georgia

References

    Ashley Welch is a journalist focusing on health and science reporting with more than a decade of experience in both breaking news and long-form storytelling. She served as the health editor for CBSNews.com for several years, reporting, writing, and editing daily health news articles and features. She is currently a freelancer writing for a mix of local, national, and international publications.