Table of ContentsView AllTable of ContentsLiving With ALSSupport Group BenefitsOrganizationsOther ResourcesFinding Support GroupsFrequently Asked Questions
Table of ContentsView All
View All
Table of Contents
Living With ALS
Support Group Benefits
Organizations
Other Resources
Finding Support Groups
Frequently Asked Questions
Amyotrophic lateral sclerosis(ALS), also known as Lou Gehrig’s disease, is aneurodegenerativedisease that causes motor neurons, the nerve cells that control voluntary movement, to deteriorate.ALS can present physical and psychological challenges, such asanxiety,depression, and feelings of grief and loss. It is essential for individuals living with ALS and their caregivers to have a strong support network.
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Living With an ALS Diagnosis
ALS is one of the most prevalent neurodegenerative disorders for which there is no cure.Accepting this reality and learning how to live with ALS can create mental and emotional struggles. Developing coping strategies to manage the various emotions that may arise is crucial.
ALS is typically associated with weakness, stiffness, and pain. Research shows that actively engaging in strategies to cope with pain can be beneficial for psychological well-being.It is also important to consider the emotional burden of ALS and adopt coping strategies to manage anxiety, depression, and grief.
Benefits of ALS Support Groups
Researchers reviewed 18 studies about methods for coping with ALS and found that the primary coping strategy was seeking social support.A support network can help you manage medical appointments and other condition-related tasks.
Support groups are a great way to connect with individuals who share similar experiences. Some of the benefits of ALS support groups include:
Major ALS Support Organizations
TheALS Associationis committed to sharing local resources and groups, providing advocacy information, and supporting research to find a cure. They have established chapters across the United States and offer various support groups for people with the condition and their caregivers. You can use theALS Association’s search toolto find a support group.
ALS Ride for Lifeis a charity organization whose mission is to give back to the ALS community. In addition to their namesake event to raise funds and awareness, they offer educational materials, mobility support, end-of-life support, and online groups for people living with or caring for someone with ALS.
Other Resources for ALS
Learn About the Condition
Understanding the physical and mental changes that may come with ALS can help alleviate fear after adiagnosis. Asking questions and talking with a healthcare provider about the ways in which ALS will affect you and your prognosis (outlook) can be a great way to educate yourself.
Government Programs
Government assistance may be available if you or someone you love has received an ALS diagnosis and needs financial support. The Social Security Administration has programs, includingSocial Security Disability Insurance(SSDI) and Supplemental Security Income (SSI), that offer assistance to qualified people.
Medicare helps with the cost of healthcare, including some medical visits, medical equipment, and medications. It is intended for people over 65; however, people younger than 65 may qualify, if they have a disability, end-stage kidney disease, or ALS.
Medicaidis a government-funded health insurance program that offers support for medical expenses based on income rather than age. It is possible to qualify for both.
Health Insurance and Prescription Drug Coverage
Clinical Trials
ALS research is ongoing. Federally and privately funded clinical trials help researchers continue studying and learning about the disease. The ALS Association provides information on current clinical trials and research efforts.
How to Find Support Groups for Patients or Caregivers
Ask your healthcare provider about local support groups, or look for virtual support groups through a trusted ALS organization. Researching the group’s topic, format, date, and time can help you find a group that fits your personality and preferences.
If you are hesitant about attending a group meeting, the group facilitator’s contact information is often available online. Reach out to that individual and ask questions to help ease your mind.
If you attend a group and decide it is not a good fit for you, try a different one or seek support through other avenues.
Online Communities
Online ALS support communities and forums are similar to in-person groups and may be easier to access than an in-person group. One 2022 study that looked at support groups for caregivers of people with ALS found that the caregivers preferred the flexibility of online groups, which allowed them to participate at a convenient time and place.
Summary
The physical and psychological impact of ALS can be overwhelming. Resources are available for those living with and caring for someone with ALS. You may qualify for programs offering financial assistance to help offset medical expenses. Having an online or in-person support network to lean on can help you create a community, share your experiences, and learn to care for yourself and others as you navigate life with ALS.
People with ALS may receive nursing and therapeutic services or end-of-life care at home. Depending on the severity of your symptoms and needs, you and your loved ones should consider your options. Talking with a healthcare provider or social worker may help determine the needed services.Learn MoreCaring for Someone With ALS
People with ALS may receive nursing and therapeutic services or end-of-life care at home. Depending on the severity of your symptoms and needs, you and your loved ones should consider your options. Talking with a healthcare provider or social worker may help determine the needed services.
Learn MoreCaring for Someone With ALS
Learn More10 Practical Tasks to Help You Deal With a Terminal Illness
There is no cure for ALS. Some medications may help manage symptoms associated with ALS, but there is no effective treatment to reverse disease progression. Because the disease is progressive, the motor neurons will continue to deteriorate.Learn MoreWhat Are the Stages of ALS?
There is no cure for ALS. Some medications may help manage symptoms associated with ALS, but there is no effective treatment to reverse disease progression. Because the disease is progressive, the motor neurons will continue to deteriorate.
Learn MoreWhat Are the Stages of ALS?
9 SourcesVerywell 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.Masrori P, Van Damme P.Amyotrophic lateral sclerosis: a clinical review.Eur J Neurol. 2020;27(10):1918-1929. doi:10.1111/ene.14393Riancho, J., Gil-Bea, F. J., Santurtun, A., & López de Munaín, A. (2019).Amyotrophic lateral sclerosis: a complex syndrome that needs an integrated research approach.Neural regeneration research,14(2), 193–196. doi.org/10.4103/1673-5374.244783Schlichte I, Petri S, Dengler R, et al.Pain-Related Coping Behavior in ALS: The Interplay between Maladaptive Coping, the Patient’s Affective State and Pain.J Clin Med. 2022;11(4):944. Published 2022 Feb 11. doi:10.3390/jcm11040944Leandro GS, Dourado Júnior MET, Santana GC, Dantas LSX.Coping strategies among amyotrophic lateral sclerosis (ALS) patients: an integrative review.J Neurol. 2022;269(2):693-702. doi:10.1007/s00415-021-10472-2Social Security Administration.Disability benefits.Social Security Administration.Medicare benefits.Medicaid.gov.Medicaid.D’Alvano G, Buonanno D, Passaniti C, et al.Support Needs and Interventions for Family Caregivers of Patients with Amyotrophic Lateral Sclerosis (ALS): A Narrative Review with Report of Telemedicine Experiences at the Time of COVID-19 Pandemic.Brain Sci. 2021;12(1):49. Published 2021 Dec 30. doi:10.3390/brainsci12010049National Institute of Neurological Disorders and Stroke.Amyotrophic lateral sclerosis (ALS).
9 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.Masrori P, Van Damme P.Amyotrophic lateral sclerosis: a clinical review.Eur J Neurol. 2020;27(10):1918-1929. doi:10.1111/ene.14393Riancho, J., Gil-Bea, F. J., Santurtun, A., & López de Munaín, A. (2019).Amyotrophic lateral sclerosis: a complex syndrome that needs an integrated research approach.Neural regeneration research,14(2), 193–196. doi.org/10.4103/1673-5374.244783Schlichte I, Petri S, Dengler R, et al.Pain-Related Coping Behavior in ALS: The Interplay between Maladaptive Coping, the Patient’s Affective State and Pain.J Clin Med. 2022;11(4):944. Published 2022 Feb 11. doi:10.3390/jcm11040944Leandro GS, Dourado Júnior MET, Santana GC, Dantas LSX.Coping strategies among amyotrophic lateral sclerosis (ALS) patients: an integrative review.J Neurol. 2022;269(2):693-702. doi:10.1007/s00415-021-10472-2Social Security Administration.Disability benefits.Social Security Administration.Medicare benefits.Medicaid.gov.Medicaid.D’Alvano G, Buonanno D, Passaniti C, et al.Support Needs and Interventions for Family Caregivers of Patients with Amyotrophic Lateral Sclerosis (ALS): A Narrative Review with Report of Telemedicine Experiences at the Time of COVID-19 Pandemic.Brain Sci. 2021;12(1):49. Published 2021 Dec 30. doi:10.3390/brainsci12010049National Institute of Neurological Disorders and Stroke.Amyotrophic lateral sclerosis (ALS).
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.
Masrori P, Van Damme P.Amyotrophic lateral sclerosis: a clinical review.Eur J Neurol. 2020;27(10):1918-1929. doi:10.1111/ene.14393Riancho, J., Gil-Bea, F. J., Santurtun, A., & López de Munaín, A. (2019).Amyotrophic lateral sclerosis: a complex syndrome that needs an integrated research approach.Neural regeneration research,14(2), 193–196. doi.org/10.4103/1673-5374.244783Schlichte I, Petri S, Dengler R, et al.Pain-Related Coping Behavior in ALS: The Interplay between Maladaptive Coping, the Patient’s Affective State and Pain.J Clin Med. 2022;11(4):944. Published 2022 Feb 11. doi:10.3390/jcm11040944Leandro GS, Dourado Júnior MET, Santana GC, Dantas LSX.Coping strategies among amyotrophic lateral sclerosis (ALS) patients: an integrative review.J Neurol. 2022;269(2):693-702. doi:10.1007/s00415-021-10472-2Social Security Administration.Disability benefits.Social Security Administration.Medicare benefits.Medicaid.gov.Medicaid.D’Alvano G, Buonanno D, Passaniti C, et al.Support Needs and Interventions for Family Caregivers of Patients with Amyotrophic Lateral Sclerosis (ALS): A Narrative Review with Report of Telemedicine Experiences at the Time of COVID-19 Pandemic.Brain Sci. 2021;12(1):49. Published 2021 Dec 30. doi:10.3390/brainsci12010049National Institute of Neurological Disorders and Stroke.Amyotrophic lateral sclerosis (ALS).
Masrori P, Van Damme P.Amyotrophic lateral sclerosis: a clinical review.Eur J Neurol. 2020;27(10):1918-1929. doi:10.1111/ene.14393
Riancho, J., Gil-Bea, F. J., Santurtun, A., & López de Munaín, A. (2019).Amyotrophic lateral sclerosis: a complex syndrome that needs an integrated research approach.Neural regeneration research,14(2), 193–196. doi.org/10.4103/1673-5374.244783
Schlichte I, Petri S, Dengler R, et al.Pain-Related Coping Behavior in ALS: The Interplay between Maladaptive Coping, the Patient’s Affective State and Pain.J Clin Med. 2022;11(4):944. Published 2022 Feb 11. doi:10.3390/jcm11040944
Leandro GS, Dourado Júnior MET, Santana GC, Dantas LSX.Coping strategies among amyotrophic lateral sclerosis (ALS) patients: an integrative review.J Neurol. 2022;269(2):693-702. doi:10.1007/s00415-021-10472-2
Social Security Administration.Disability benefits.
Social Security Administration.Medicare benefits.
Medicaid.gov.Medicaid.
D’Alvano G, Buonanno D, Passaniti C, et al.Support Needs and Interventions for Family Caregivers of Patients with Amyotrophic Lateral Sclerosis (ALS): A Narrative Review with Report of Telemedicine Experiences at the Time of COVID-19 Pandemic.Brain Sci. 2021;12(1):49. Published 2021 Dec 30. doi:10.3390/brainsci12010049
National Institute of Neurological Disorders and Stroke.Amyotrophic lateral sclerosis (ALS).
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