- Over 50% of people with ALS live more than 3 years.
- Twenty percent live five years or more.
- Ten percent live 10 or more years.
- Five percent will live more than 20 years.
What Can Be Done to Increase Life Expectancy for People with ALS
Medication: Currently, Riluzole is the only drug FDA-approved for ALS. It has been shown in randomized double-blinded clinical trials to prolong life expectancy for approximately 2 to 3 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 quality of life and prolong 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): This means that a tube is placed into the stomach which leads out of the body through the abdominal wall. Although studies have failed to show 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.
Bottom LineThe American Academy of Neurology has compiled their recommendations for caring for patients with ALS into a document called Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional and respiratory therapies (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. This document addresses the treatments mentioned above, as well as outlines other factors in caring for a patient with ALS.
If you or a loved one has ALS, I highly recommend taking a look at this document (full-text is available by clicking the link above). Better yet, print it out, highlight sections and write down any questions for your doctor to take with you to your next appointment.
"Facts You Should Know About ALS." Website of the ALS Association. Accessed: October 2010.
Miller RG, et. al. Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional and respiratory therapies (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2009;73;1218-1226.