Mental Health and the ALS Community

(BPT) – Sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA)Each year, an estimated 5,000-6,000 Americans are diagnosed with amyotrophic lateral sclerosis (ALS) — also known as Lou Gehrig’s disease — a neurodegenerative disease that leads to muscle weakness, eventual loss of function, and currently has no cure.[1],[2] When a person is diagnosed with ALS, the individual, their caregivers and loved ones embark on a life-changing journey. The emotional, physical and social impacts can vary for each person. It is important to be aware of possible behavioral and mental health changes among people living with ALS (pALS) and caregivers of a person living with ALS (cALS). There are several resources and support systems provided by the ALS community.Signs of DepressionChanges in a person’s health and well-being may contribute to a shift in their mental health, potentially resulting in depression.[3] Routines and former abilities may change as pALS and cALS adjust to life with ALS, so recognizing mental health symptoms is important in ALS care.[4]Symptoms of depression may include:[3]Persistent sad or “empty” moodFeeling hopeless or irritableLoss of interest or pleasure in hobbies and activitiesDecreased energySupport for pALS and cALSThere are many coping strategies and support systems within the ALS community that aim to help those who are struggling.Here are some tips for how to support yourself or a loved one:Implement healthy habits – Taking control of your daily habits may help manage stress. Healthy habits include self-care, daily exercise, getting enough sleep, maintaining a balanced diet and socialization.[5],[6],[7]Know when to seek help – If you or a loved one are experiencing destressing symptoms, open communication with someone you trust and/or your doctor or counselor to help you get the care you need.[8]Attend support groups – There are various types of support groups, in-person or virtual, ranging in age and disease area and can be specific for patients and/or caregivers. These groups can help you connect with others who are experiencing similar day-to-day challenges and provide the opportunity to speak with others about your own experiences.Stay connected – Remaining socially connected may improve well-being.[7],[9] Reaching out to family and friends may provide emotional support and practical help.[5]Share Your Own Story and Hear from OthersAs a person with ALS or a caregiver, sharing your story may help build a sense of community with others experiencing a similar journey as you. MTPA’s Share Your Story program allows pALS and cALS to share real-life experiences. Through video and written stories people impacted by ALS share their experiences, insights and messages of hope. To view these inspirational individuals, visit ShareYourALSStory.com/HearfromOthers.This content is sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA) and is intended for U.S. audiences only. The information provided here is general in nature and is not intended to be a substitute for professional medical advice, diagnosis or treatment. You are strongly encouraged to seek the advice of your doctor or other qualified health care provider with any questions regarding a medical condition.[1] National Amyotrophic Lateral Sclerosis (ALS) Registry – FAQs. (2022, September). Centers for Disease Control and Prevention. Retrieved February 22, 2024, from https://www.cdc.gov/als/ALSFAQ.html[2] Amyotrophic Lateral Sclerosis (ALS) Fact Sheet. National Institute of Neurological Disorders and Stroke, National Institutes of Health, June 2013, https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-Lateral-Sclerosis-ALS-Fact-Sheet. Accessed July 2022.[3] Chronic Illness and Mental Health: Recognizing and Treating depression. (n.d.). National Institute of Mental Health (NIMH). https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health[4] Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, Kalra S, Katz JS, Mitsumoto H, Rosenfeld J, Shoesmith C, Strong MJ, Woolley SC; Quality Standards Subcommittee of the American Academy of Neurology. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009 Oct 13;73(15):1227-33. doi: 10.1212/WNL.0b013e3181bc01a4. PMID: 19822873; PMCID: PMC2764728.[5] Caring for your mental health. (n.d.). National Institute of Mental Health (NIMH). https://www.nimh.nih.gov/health/topics/caring-for-your-mental-health[6] Harandi TF, Taghinasab MM, Nayeri TD. The correlation of social support with mental health: A meta-analysis. Electron Physician. 2017 Sep 25;9(9):5212-5222. doi: 10.19082/5212. PMID: 29038699; PMCID: PMC5633215.[7] How Does Social Connectedness Affect Health? (n.d.). Centers for Disease Control and Prevention. https://www.cdc.gov/emotional-wellbeing/social-connectedness/affect-health.htm#:~:text=When%20people%20are%20socially%20connected%20and%20have%20stable,cope%20with%20hard%20times%2C%20stress%2C%20anxiety%2C%20and%20depression.[8] Generalized anxiety disorder: when worry gets out of control. (n.d.). National Institute of Mental Health (NIMH). https://www.nimh.nih.gov/health/publications/generalized-anxiety-disorder-gad[9] Holt-Lunstad J. Social connection as a public health issue: the evidence and a systemic framework for prioritizing the “social” in social determinants of health. Annu Rev Public Health. 2022;43:193-213.CP-MTPA-US-0329 03/24