Lou Gehrig's Disease (ALS) Life Expectancy

If you or a loved one has been diagnosed with amyotrophic lateral sclerosis (ALS), also called Lou Gehrig's disease, one of your questions is the prognosis for the disease. ALS has a significant impact on life expectancy but there are treatments that can slow the loss of physical function and may extend life.

ALS is a neurodegenerative disease that affects nerve cells in the brain and spinal cord. It is a progressive disease that affects the motor neurons reaching from the brain to the spinal cord. These neurons control muscles throughout the body. Over time, the brain loses its ability to control muscle movement due to the death of these motor neurons.

The average life expectancy of a person with ALS is two to five years from the time of diagnosis. However, it varies greatly:

• Over 50 percent of people with ALS live more than three years.
• Twenty percent live five years or more.
• Ten percent live 10 or more years.
• Five percent will live more than 20 years.

While there is no cure for ALS or ways to stop the progression of the disease completely, there are some things you can do to improve life expectancy. These include:

• Medication: 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, although other, less rigorous studies have shown the drug to have a slightly greater effect. In addition, other drugs are used for symptom management that can help improve the quality of life and prolong functioning. Radicava (edaravone) was approved in 2017. In clinical trials, it lessened decline in physical functioning.
• Noninvasive Ventilation: The use of noninvasive ventilation (NEV) was shown to prolong survival between seven and 11 months, depending on how long it was used each day and different patient characteristics. The primary mode of NEV is positive-pressure ventilation, which is basically breathing through a mask that fits over the mouth and nose.
• 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 the consistent impact on survival time, the American Academy of Neurology recommends that PEG is used for people with ALS to keep body weight stable. Different doctors have different ideas on when the best time to do a PEG procedure and begin feeding this way.

Advances have been made in recent years in the support and treatment for ALS. Educating yourself on treatment and care options for ALS can help you understand this difficult and complicated diagnosis. Talk to your doctor about what you can be done to help the person with ALS live more comfortably for as long as possible.