Table of ContentsView AllTable of ContentsWhat Is ALS?How ALS Affects the BodyALS Life ExpectancyTreatmentsComplicationsImproving Quality of Life
Table of ContentsView All
View All
Table of Contents
What Is ALS?
How ALS Affects the Body
ALS Life Expectancy
Treatments
Complications
Improving Quality of Life
Amyotrophic lateral sclerosis(ALS) life expectancy varies, but someone diagnosed with ALS is expected to live 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.
This article briefly explains what an ALS diagnosis means, and what you can expect in terms of ALS progression and its complications. It discusses medication and other treatment interventions.

ALS is a neurodegenerative condition affecting the brain, spinal cord, and muscle activity. It is also known as Lou Gehrig’s disease, named for a baseball player who died of ALS in 1941.
There are different classifications of neurodegenerative disorders, with ALS defined as a transactivation response DNA binding protein 43 (TDP-43)proteinopathy.This describes the abnormal function of proteins that lead to symptoms including muscle weakness and atrophy.
ALS also has additional subtypes, depending on how it evolves in the body and where impacts are located originally. For example, bulbar ALS is associated with head and neck weakness and less positive outcomes (life expectancy may be two years or less).
Spinal onset impacts begin in the limbs, with some evolving evidence that these might be considered two different diseases for treatment purposes.
The two types arise from differentgenetic pathways, but genetics is only one factor in the development of ALS. More study is needed to fully understand what causes ALS.
9 Early Signs of ALS
Early symptoms can include:
Beyond the first symptoms, ALS continues to progress. People typically have trouble lifting things, or using their hands for tasks. Their balance and gait will change, with increased risks of trips and falls. Work, school, home, and hobbies become a challenge. Over time, the effects of ALS include:
It’s also common for people living with ALS to experienceanxietyand depression, because they remain aware of their condition. It’s more rare for people to experience dementia-like symptoms.
Some people don’t fall neatly into either spinal or bulbar subtype and experience other symptoms. About 5% of people have difficulty breathing, morning headaches, mood changes, and sleep disruptions with their ALS.
ALS Life Expectancy and ProgressionFor most people, ALS progresses quickly, over a period of 2 to 5 years.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. People in the final stage of a fatal ALS diagnosis are typically given medication to ease discomfort and emotional distress.They are usually given hospice care and aren’t expected to survive more than 6 months.
ALS Life Expectancy and Progression
For most people, ALS progresses quickly, over a period of 2 to 5 years.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. People in the final stage of a fatal ALS diagnosis are typically given medication to ease discomfort and emotional distress.They are usually given hospice care and aren’t expected to survive more than 6 months.
What’s the Difference Between Palliative Care and Hospice?
Factors That Affect Life Expectancy
ALS can be considered either familial (a genetic influence) or sporadic, meaning there is no known reason. Studies do suggest that environmental factors linked with sporadic ALS cases include:
For example, a biotoxin calledBeta-methylamino-L-alanine(BMAA) is found in plants, food, and seafood. Exposure has been associated with certain types of ALS.
Military Service and ALSMilitary service increases the risk of ALS, although why is not clear. It may be due to environmental factors, or chronic high stress and physical demands. These demands could be why professional athletes (like Lou Gehrig) may be more at risk, as was the conclusion of one study of 19,423 National Football League players.
Military Service and ALS
Military service increases the risk of ALS, although why is not clear. It may be due to environmental factors, or chronic high stress and physical demands. These demands could be why professional athletes (like Lou Gehrig) may be more at risk, as was the conclusion of one study of 19,423 National Football League players.
Researchers increasingly find evidence that specific genes are involved with specific types of ALS, with gene C9orf72 the most common culprit implicated in up to 40% of cases in families.It’s also associated with 6% of sporadic cases. Other factors include:
Any of these factors may play a role in a specific ALS diagnosis and affect life expectancy. Another factor is the time it takes to receive an accurate diagnosis, which averages 11 months after the first symptoms.An early diagnosis can affect treatment and prognosis.
Variations in ALS Life ExpectancyAstrophysicist Stephen Hawking lived with ALS for longer than any other known person. He was diagnosed in 1963 and survived for 55 years. 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 more10% live 10 years or more5% live up to 20 years or more
Variations in ALS Life Expectancy
Astrophysicist Stephen Hawking lived with ALS for longer than any other known person. He was diagnosed in 1963 and survived for 55 years. 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 more10% live 10 years or more5% live up to 20 years or more
Astrophysicist Stephen Hawking lived with ALS for longer than any other known person. He was diagnosed in 1963 and survived for 55 years. According to the ALS Association, the average life expectancy of a person with ALS is three years. However, it varies greatly:
What Is Guamanian ALS?
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.
Medication
Medications used to treat ALS include:
Noninvasive Ventilation
The use ofnoninvasive 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.
Ventilation and End of Life DecisionsBecause 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.
Ventilation and End of Life Decisions
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 NeuRxdiaphragmpacing 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.There are specialists who consider it can be harmful.
Percutaneous Endoscopic Gastrostomy (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.
Hopeful Research for ALSThere is no way to prevent or cure ALS, but it is possible to slow thedisease progressionwith appropriate treatment. 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.
Hopeful Research for ALS
There is no way to prevent or cure ALS, but it is possible to slow thedisease progressionwith appropriate treatment. 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.
Managing Symptoms of ALS
Complications can arise from the neurological damage of the disease process or from treatments:
Cognitive changes and dementia also can occur as ALS progresses.
People living with ALS may benefit from several types of therapy. These can include:
Summary
ALS life expectancy remains comparatively low, with most people living just a few years after diagnosis. Yet many factors, including the type of ALS (genetic or sporadic) and other factors and influences (environmental exposure, age, military service) can affect the prognosis.
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. Quality of life interventions also are important for people living with ALS.
Talk to your healthcare provider about what you can do to live more comfortably with ALS and care for those who are living with its challenges. Be aware that support groups and other resources can help with navigating this difficult illness.
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23 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Nowicka N, Juranek J, Juranek JK, Wojtkiewicz J.Risk factors and emerging therapies in amyotrophic lateral sclerosis.Int J Mol Sci. 2019;20(11). doi: 10.3390/ijms20112616ALS Association.Stages of ALS.Dugger BN, Dickson DW.Pathology of Neurodegenerative Diseases.Cold Spring Harb Perspect Biol. 2017 Jul 5;9(7):a028035. doi:10.1101/cshperspect.a028035.Kim HS, Son J, Lee D, Tsai J, Wang D, Chocron ES, et al.Gut- and oral-dysbiosis differentially impact spinal- and bulbar-onset ALS, predicting ALS severity and potentially determining the location of disease onset.BMC Neurol. 2022 Feb 21;22(1):62. doi:10.1186/s12883-022-02586-5.National Institute of Neurological Disorders and Stroke.Amyotrophic lateral sclerosis (ALS).Zarei S, Carr K, Reiley L, Diaz K, Guerra O, Altamirano PF, Pagani W, Lodin D, Orozco G, Chinea A.A comprehensive review of amyotrophic lateral sclerosis.Surg Neurol Int.2015 Nov 16;6:171. doi:10.4103/2152-7806.169561Niedermeyer S, Murn M, Choi PJ.Respiratory failure in amyotrophic lateral sclerosis.Chest. 2019;155(2):401-408. doi:10.1016/j.chest.2018.06.035Target ALS.The stages of ALS: Framing the progression of a nonlinear disease.Centers for Disease Control and Prevention.National Amyotrophic Lateral Sclerosis (ALS) Registry: impact, challenges, and future directions.Cucovici A, Fontana A, Ivashynka A, et al.The impact of lifetime alcohol and cigarette smoking loads on amyotrophic lateral sclerosis progression: a cross-sectional study.Life (Basel). 2021;11(4):352. doi:10.3390/life11040352Daneshvar DH, Mez J, Alosco ML, et al.Incidence of and mortality from amyotrophic lateral sclerosis in National Football League athletes.JAMA Netw Open. 2021;4(12):e2138801. doi:10.1001/jamanetworkopen.2021.38801ALS Association.ALS genes and mutations.Centers for Disease Control and Prevention.Prevalence of amyotrophic lateral sclerosis.ALS Association.Who gets ALS?Wilkins HM, Dimachkie MM, Agbas A.Blood-based Biomarkers for Amyotrophic Lateral Sclerosis. In: Araki T, editor. Amyotrophic Lateral Sclerosis [Internet]. Brisbane (AU):Exon Publications; 2021 Jul 25. Chapter 6. PMID: 34473438.Oskarsson B, Gendron TF, Staff NP.Amyotrophic lateral sclerosis: An update for 2018.Mayo Clinic Proceedings. 2018;93(11):1617-1628. doi: 10.1016/j.mayocp.2018.04.007Green JR, Allison KM, Cordella C, et al.Additional evidence for a therapeutic effect of dextromethorphan/quinidine on bulbar motor function in patients with amyotrophic lateral sclerosis: A quantitative speech analysis.Br J Clin Pharmacol. 2018;84(12):2849-2856. doi: 10.1111/bcp.13745Food and Drug Association.FDA approves treatment of amyotrophic lateral sclerosis associated with a mutation in the SOD1 gene.Shoesmith C, Abrahao A, Benstead T, et al.Canadian best practice recommendations for the management of amyotrophic lateral sclerosis.CMAJ. 2020;192(46):E1453-E1468. doi: 10.1503/cmaj.191721National Institute of Neurological Disorders and Stroke.Amyotrophic lateral sclerosis (ALS).FDA Humanitarian Device Exemption.NeuRx diaphragm pacing system.Rusina R, Vandenberghe R, Bruffaerts R.Cognitive and behavioral manifestations in ALS: beyond motor system involvement.Diagnostics (Basel). 2021;11(4). doi: 10.3390/diagnostics11040624Meyer R, Spittel S, Steinfurth L, et al.Patient-reported outcome of physical therapy in amyotrophic lateral sclerosis: observational online study.JMIR Rehabil Assist Technol. 2018;5(2):e10099. doi:10.2196/10099Additional ReadingPinto 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.
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Nowicka N, Juranek J, Juranek JK, Wojtkiewicz J.Risk factors and emerging therapies in amyotrophic lateral sclerosis.Int J Mol Sci. 2019;20(11). doi: 10.3390/ijms20112616ALS Association.Stages of ALS.Dugger BN, Dickson DW.Pathology of Neurodegenerative Diseases.Cold Spring Harb Perspect Biol. 2017 Jul 5;9(7):a028035. doi:10.1101/cshperspect.a028035.Kim HS, Son J, Lee D, Tsai J, Wang D, Chocron ES, et al.Gut- and oral-dysbiosis differentially impact spinal- and bulbar-onset ALS, predicting ALS severity and potentially determining the location of disease onset.BMC Neurol. 2022 Feb 21;22(1):62. doi:10.1186/s12883-022-02586-5.National Institute of Neurological Disorders and Stroke.Amyotrophic lateral sclerosis (ALS).Zarei S, Carr K, Reiley L, Diaz K, Guerra O, Altamirano PF, Pagani W, Lodin D, Orozco G, Chinea A.A comprehensive review of amyotrophic lateral sclerosis.Surg Neurol Int.2015 Nov 16;6:171. doi:10.4103/2152-7806.169561Niedermeyer S, Murn M, Choi PJ.Respiratory failure in amyotrophic lateral sclerosis.Chest. 2019;155(2):401-408. doi:10.1016/j.chest.2018.06.035Target ALS.The stages of ALS: Framing the progression of a nonlinear disease.Centers for Disease Control and Prevention.National Amyotrophic Lateral Sclerosis (ALS) Registry: impact, challenges, and future directions.Cucovici A, Fontana A, Ivashynka A, et al.The impact of lifetime alcohol and cigarette smoking loads on amyotrophic lateral sclerosis progression: a cross-sectional study.Life (Basel). 2021;11(4):352. doi:10.3390/life11040352Daneshvar DH, Mez J, Alosco ML, et al.Incidence of and mortality from amyotrophic lateral sclerosis in National Football League athletes.JAMA Netw Open. 2021;4(12):e2138801. doi:10.1001/jamanetworkopen.2021.38801ALS Association.ALS genes and mutations.Centers for Disease Control and Prevention.Prevalence of amyotrophic lateral sclerosis.ALS Association.Who gets ALS?Wilkins HM, Dimachkie MM, Agbas A.Blood-based Biomarkers for Amyotrophic Lateral Sclerosis. In: Araki T, editor. Amyotrophic Lateral Sclerosis [Internet]. Brisbane (AU):Exon Publications; 2021 Jul 25. Chapter 6. PMID: 34473438.Oskarsson B, Gendron TF, Staff NP.Amyotrophic lateral sclerosis: An update for 2018.Mayo Clinic Proceedings. 2018;93(11):1617-1628. doi: 10.1016/j.mayocp.2018.04.007Green JR, Allison KM, Cordella C, et al.Additional evidence for a therapeutic effect of dextromethorphan/quinidine on bulbar motor function in patients with amyotrophic lateral sclerosis: A quantitative speech analysis.Br J Clin Pharmacol. 2018;84(12):2849-2856. doi: 10.1111/bcp.13745Food and Drug Association.FDA approves treatment of amyotrophic lateral sclerosis associated with a mutation in the SOD1 gene.Shoesmith C, Abrahao A, Benstead T, et al.Canadian best practice recommendations for the management of amyotrophic lateral sclerosis.CMAJ. 2020;192(46):E1453-E1468. doi: 10.1503/cmaj.191721National Institute of Neurological Disorders and Stroke.Amyotrophic lateral sclerosis (ALS).FDA Humanitarian Device Exemption.NeuRx diaphragm pacing system.Rusina R, Vandenberghe R, Bruffaerts R.Cognitive and behavioral manifestations in ALS: beyond motor system involvement.Diagnostics (Basel). 2021;11(4). doi: 10.3390/diagnostics11040624Meyer R, Spittel S, Steinfurth L, et al.Patient-reported outcome of physical therapy in amyotrophic lateral sclerosis: observational online study.JMIR Rehabil Assist Technol. 2018;5(2):e10099. doi:10.2196/10099
Nowicka N, Juranek J, Juranek JK, Wojtkiewicz J.Risk factors and emerging therapies in amyotrophic lateral sclerosis.Int J Mol Sci. 2019;20(11). doi: 10.3390/ijms20112616
ALS Association.Stages of ALS.
Dugger BN, Dickson DW.Pathology of Neurodegenerative Diseases.Cold Spring Harb Perspect Biol. 2017 Jul 5;9(7):a028035. doi:10.1101/cshperspect.a028035.
Kim HS, Son J, Lee D, Tsai J, Wang D, Chocron ES, et al.Gut- and oral-dysbiosis differentially impact spinal- and bulbar-onset ALS, predicting ALS severity and potentially determining the location of disease onset.BMC Neurol. 2022 Feb 21;22(1):62. doi:10.1186/s12883-022-02586-5.
National Institute of Neurological Disorders and Stroke.Amyotrophic lateral sclerosis (ALS).
Zarei S, Carr K, Reiley L, Diaz K, Guerra O, Altamirano PF, Pagani W, Lodin D, Orozco G, Chinea A.A comprehensive review of amyotrophic lateral sclerosis.Surg Neurol Int.2015 Nov 16;6:171. doi:10.4103/2152-7806.169561
Niedermeyer S, Murn M, Choi PJ.Respiratory failure in amyotrophic lateral sclerosis.Chest. 2019;155(2):401-408. doi:10.1016/j.chest.2018.06.035
Target ALS.The stages of ALS: Framing the progression of a nonlinear disease.
Centers for Disease Control and Prevention.National Amyotrophic Lateral Sclerosis (ALS) Registry: impact, challenges, and future directions.
Cucovici A, Fontana A, Ivashynka A, et al.The impact of lifetime alcohol and cigarette smoking loads on amyotrophic lateral sclerosis progression: a cross-sectional study.Life (Basel). 2021;11(4):352. doi:10.3390/life11040352
Daneshvar DH, Mez J, Alosco ML, et al.Incidence of and mortality from amyotrophic lateral sclerosis in National Football League athletes.JAMA Netw Open. 2021;4(12):e2138801. doi:10.1001/jamanetworkopen.2021.38801
ALS Association.ALS genes and mutations.
Centers for Disease Control and Prevention.Prevalence of amyotrophic lateral sclerosis.
ALS Association.Who gets ALS?
Wilkins HM, Dimachkie MM, Agbas A.Blood-based Biomarkers for Amyotrophic Lateral Sclerosis. In: Araki T, editor. Amyotrophic Lateral Sclerosis [Internet]. Brisbane (AU):Exon Publications; 2021 Jul 25. Chapter 6. PMID: 34473438.
Oskarsson B, Gendron TF, Staff NP.Amyotrophic lateral sclerosis: An update for 2018.Mayo Clinic Proceedings. 2018;93(11):1617-1628. doi: 10.1016/j.mayocp.2018.04.007
Green JR, Allison KM, Cordella C, et al.Additional evidence for a therapeutic effect of dextromethorphan/quinidine on bulbar motor function in patients with amyotrophic lateral sclerosis: A quantitative speech analysis.Br J Clin Pharmacol. 2018;84(12):2849-2856. doi: 10.1111/bcp.13745
Food and Drug Association.FDA approves treatment of amyotrophic lateral sclerosis associated with a mutation in the SOD1 gene.
Shoesmith C, Abrahao A, Benstead T, et al.Canadian best practice recommendations for the management of amyotrophic lateral sclerosis.CMAJ. 2020;192(46):E1453-E1468. doi: 10.1503/cmaj.191721
FDA Humanitarian Device Exemption.NeuRx diaphragm pacing system.
Rusina R, Vandenberghe R, Bruffaerts R.Cognitive and behavioral manifestations in ALS: beyond motor system involvement.Diagnostics (Basel). 2021;11(4). doi: 10.3390/diagnostics11040624
Meyer R, Spittel S, Steinfurth L, et al.Patient-reported outcome of physical therapy in amyotrophic lateral sclerosis: observational online study.JMIR Rehabil Assist Technol. 2018;5(2):e10099. doi:10.2196/10099
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.
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