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    • #20800
      Amanda
      Keymaster

      Hello community! We have been getting a lot of new members this past month. Some are pALS, and others are loved ones and care givers. Thank you to everyone who has reached out and made members feel welcomed. The information and support you provide is endless.

      Do you have any advice or information to share with new members? What would that be?

    • #20805
      Richard
      Participant

      After Being Diagnosed With ALS 

      Just a few thoughts about the post-ALS diagnosis and working with your physician or ALS clinic: 

      1. Be assigned a case manager, a point person. Someone who reaches out to you, navigating you on what to do, when to do it and how to do it.
      2. Be provided an ALS primer. ALS introduction paperwork or at least an identification of websites to go to (in a specific order), so to understand the disease, what to expect, medication, research being done, self-help, etc.
      3. Obtain a second opinion or third, fourth, etc. if necessary.
      4. Rule out any ALS mimicking diseases, such as Multifocal Motor Neuropathy.
      5. Be given an ALSFRS test upon initial ALS diagnosis. If you don’t measure it, you can’t determine the decline progression.  Update it daily.
      6. Familiarize yourself with ALS initial and advanced symptoms.
      7. Discuss the possibility of being prescribed Riluzole.
      8. Discuss the possible need for Social Security Administration (SSA) Social Security Disability Insurance (SSDI)
        1. If you’ve received a diagnosis of Amyotrophic Lateral Sclerosis, you qualify for the Social Security Administration’s Compassionate Allowances program.
        2. Request guidance through the SSA SSDI and Medicare process
        3. Discuss the possible need for supplemental insurance for prescriptions, vision and dental
      1. Discuss the possible need for handicap parking and apply if applicable before it’s needed.
      2. Consider getting fitted for a wheelchair or motorized scooter before you actually need it.
      3. Investigate technological options for communicating before the power of speech is altogether gone.
      4. Consider your future housing needs.
      5. Email your congressmen for ALS funding and treatment legislation.
      6. Discuss with your physician any clinical trials being conducted. Working with your physician be presented with what is available and what would work best for you.
      7. Develop your own personal (more granular) ALS functional rating scale test, so to more actually measure your disease progression.
      8. Recommend to be questioned about family health history, nutrition, lifestyle habits, medications, injuries, surgeries, personality traits, occupations, etc. This should be part of physicians and clinics standard practice.  Reason, from what I have read online sporadic ALS has unknown origins.  Also, ALS progresses differently in different people.  It would make sense that physicians and clinics obtain as much information about the ALS patient as possible to then be used for data mining in a US/worldwide database.
      9. Sign up for PatientsLikeMe, a health information sharing website that helps people find new treatments, connect with others and take action to improve their outcomes.
      10. Be aware of the “Right to Try” Act, which allows terminally ill patients access to experimental therapies that have completed Phase I testing but have not been approved by the Food and Drug Administration.
      11. Discuss if exercising is an option to possibly slow down the disease progression and which exercises you’d most benefit from performing.
      12. Since there is currently no cure for ALS all therapeutic options should be explored with your physician or ALS clinic: 
      1. Get informed about Complementary and Alternative Medicine (CAM) or Alternative or Off-label Treatments (AOT). Even if you only benefit by the placebo effort, you’ll feel better and that’s what we’re all trying to achieve. 
      2. Discuss trying ALSUntangled recommended therapies. Therapies showing some benefit and are not “we do not recommend” should be discussed with your physician as possible options.

      The views and opinions expressed herein are my own.  This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read.

      Websites of Interest

      ALS Facts

      https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-lateral-Sclerosis-ALS-Fact-Sheet

      ALS Fact Sheet

      https://iamals.org/get-help/frequently-asked-questions-about-als/

      Frequently asked questions about ALS

      https://iamals.org/get-help/how-to-build-your-care-plan/

      A series of checklists with questions to ask your care teams to help get you started.

      Symptom Checkers

      https://symptomchecker.isabelhealthcare.com/

      Isabel – The Symptom Checker doctors use and trust. Developed, refined and tested over 20 years using Artificial Intelligence technologies.

      http://www.symcat.com/

      A disease calculator that uses hundreds of thousands of patient records to estimate probability of disease. You may have heard of Watson by IBM, which illustrates a trend of computing and predictive analytics in healthcare. We strive to empower people and medical professionals by placing the state-of-the-art in computer diagnosis at their fingertips.

      https://www.everydayhealth.com/symptom-checker/

      Everyday Health symptom checker

      Functional Rating Scales

      https://www.outcomes-umassmed.org/ALS/alsscale.aspx

      ALS Functional Rating Scale

      https://www.mdcalc.com/revised-amyotrophic-lateral-sclerosis-functional-rating-scale-alsfrs-r#use-cases

      ALS Revised Functional Rating Scale

      https://med.emory.edu/departments/neurology/programs_centers/emory_als_center/_documents/roads.pdf

      Rasch Overall ALS Disability Scale (ROADS)

      Latest ALS News

      http://www.ALSNewsToday.com

      ALS News Today is strictly a news and information website about the disease.

      http://www.als.net

      Latest ALS research news

      https://www.sciencedaily.com/news/health_medicine/amyotrophic_lateral_sclerosis/

      Your source for the latest ALS research news

      https://www.news-medical.net/?tag=/Amyotrophic-Lateral-Sclerosis-(ALS)

      Puts ALS medical and life sciences information in reach of people that can make a difference.

      https://www.answerals.org/news/

      A global project dedicated to developing and implementing a unified strategy to stop Amyotrophic Lateral Sclerosis (ALS) through an aggressively funded agenda.

      https://alscenter.wustl.edu/news/

      Washington University School of Medicine ALS clinic news

      https://lesturnerals.org/als-news-and-resources/

      Advance scientific research into the causes, treatments and prevention of ALS.  Provide exceptional clinical care and support services to people living with ALS, their families and caregivers. Increase awareness and education of ALS.

      https://alstreatment.com/

      The aim of ALStreatment.com is to offer a comprehensive resource of information about Amyotrophic Lateral Sclerosis, including its causes, associated symptoms and current available treatments which can help slow down the progression of the disease.

      Forums, Information, Support and Resource Sharing

      http://www.patientslikeme.com

      A health information sharing website for patients. Giving patients the opportunity to share both personal stories and health data about your conditions to help uncover great ideas and new knowledge. By sharing information, you can put your disease experiences in context and find answers to the questions you have.

      http://www.iamALS.org

      Founded by ALS patient Brian Wallach and his wife, Sandra Abrevaya, I AM ALS is revolutionizing how we cure ALS by empowering and mobilizing patients, engaging with policy-makers and offering vital resources for people impacted by ALS.

      http://www.yourALSGuide.com

      Website helps answer your questions, connect you to resources, save you money, expand your support network, and generally make life with ALS a little easier.

      https://www.youralsguide.com/resource-list.html

      ALS support and resource list

      https://www.cdc.gov/als/Default.html

      National ALS Registry offers the chance to participate in research and be counted.

      https://www.everythingals.org/

      EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation, a 501(3)c organization, bringing technological innovations and data science to support efforts — from care to cure — for people with ALS, by offering a open-data platform for direct engagement with patients, caregivers, researchers and drug companies.

      http://webct.alsa.org/site/PageServer?pagename=CT_8_patient_family_services

      Milford CT – The ALS Association Connecticut Chapter offers a full range of services to guide and assist you as you learn more about ALS.

      https://alsone.org/

      ALS ONE is an unprecedented partnership of world leaders in ALS research and care who have joined forces to help cut bureaucratic red tape to combat the disease more efficiently and effectively for all.

      Clinical Trials, Alternative Treatments and Self Help

      http://www.neals.org

      Northeast ALS Consortium (NEALS) is to rapidly translate scientific advances into clinical research and new treatments for people with Amyotrophic Lateral Sclerosis (ALS) and motor neuron disease.

      https://www.massgeneral.org/neurology/als/

      https://www.massgeneral.org/neurology/als/news/all

      The Healey Center for ALS is on a quest to discover life-saving therapies for people worldwide who are affected by amyotrophic lateral sclerosis (ALS).

      http://www.ALSUntangled.com

      Reviews alternative and off label treatments, with the goal of helping people with ALS make more informed decisions about them.

      <h2>https://iamals.org/get-help/#discover-current-and-potential-therapies-als-clinical-trials</h2>
      Clinical trial dashboard

      https://iamals.org/get-help/als-signal-clinical-research-dashboard/

      Clinical Trial Dashboard

      https://youtu.be/aeLYTqx6a9w

      Dashboard Introductory Video

      https://iamals.org/get-help/als-treatments-and-trials/#clinical-trials

      Find A Clinical Trial

      https://www.neals.org/als-trials/als-clinical-research/what-is-a-clinical-trial-and-why-are-they-necessary-for-als

      Clinical Trial 101

      https://iamals.org/get-help/#discover-current-and-potential-therapies-als-clinical-trials

      Clinical Trial Resource Page

      ALS Clinical Trials | ALS Therapy Development Institute

      https://www.als.net/als-research/als-clinical-trials/

      ALS.net clinical trial page

      https://www.fda.gov/news-events/public-health-focus/expanded-access

      Expanded Access – potential pathway for a patient with an <u>immediately life-threatening condition or serious disease or condition</u> to gain access to an <u>investigational medical product</u> (drug, biologic, or medical device) for treatment outside of clinical trials when no comparable or satisfactory alternative therapy options are available.

      Foundations, Organizations and Research

      http://www.alsfoundation.org/

      The ALS Foundation goal is improve the quality of life for those living with ALS and to do whatever they can to ease the physical, emotional, and financial burdens that accompany this diagnosis for the men and women in our community who are forced to battle this disease on a daily basis.

      http://www.als.org

      The ALS Association is the only national non-profit organization fighting ALS on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

      http://webnne.alsa.org/site/PageServer?pagename=NNE_homepage

      The ALS Association National Office, located in Washington DC and the Northern New England Chapter, located in Concord, NH, work together to accomplish our mission, “To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.”  The Northern New England Chapter focuses primarily on helping local patients and families live with ALS, while the National Office focuses primarily on research and advocacy. The National Office also supports the Chapters by providing up-to-date information and materials.

      https://alsworldwide.org/

      A nonprofit organization that provides free guidance and support to thousands of people living with ALS and their loved ones in the USA and more than 150 countries via email, online resources and phone. We seek to help people live better and longer with ALS.

      https://www.mda.org/disease/amyotrophic-lateral-sclerosis

      MDA takes a big-picture perspective on neuromuscular diseases, including amyotrophic lateral sclerosis (ALS), so we can work across conditions to find effective treatments and cures. With our collective strength, we encourage early diagnosis and action, support families in hometowns across the country, and uncover research breakthroughs to help everyone with ALS live longer, stronger lives.

      https://dataportal.answerals.org/home

      The Answer ALS data portal is designed to help you mine this wealth of data and resources, ultimately advancing the development of effective therapeutics for ALS

      http://www.alsfindingacure.org/

      The sole purpose of the ALS Finding a Cure® Initiative is funding research to find a cure

      https://www.nejm.org/search?q=amyotrophic+lateral+sclerosis&asug=amyo

      Publish the best ALS research and information at the intersection of biomedical science and clinical practice and to present this information in understandable, clinically useful formats that inform health care delivery and improve patient outcomes.

      https://www.alsmndalliance.org/

      The International Alliance of ALS/MND Associations was founded to provide an international community for individual ALS/MND Associations globally. Our vision is world free of ALS and we help members thrive by adding value to existing and future associations through curation and creation of information and by acting as a global gateway through which Alliance Members, PALS and CALS, internal, and external stakeholders connect.

      https://www.wewillcureals.com/

      CURE ALS is dedicated to the mission of raising funds to help find a cure.

      https://teamgleason.org

      Develops and provides equipment and technology to help restore ALS people’s communication, productivity, and purpose. Provided over $10 million in adventure, technology, equipment, and care services to over 15,000 people living with ALS and countless others through advocacy, support and ultimately bringing an end to the disease.

      https://www.alshf.org/

      The ALS Hope Foundation funds local and international efforts to find the cause and cure of ALS

      https://iamals.org/latest-research/

      Latest research from I AM ALS

      ALS Database Registry

      The ALS Registry allows persons with ALS to fight back and help defeat ALS. By signing up, being counted, and answering brief questions about you and your disease, you can help researchers find answers to important questions.

      The National ALS Registry is a program to collect and analyze data about persons living with ALS.

      • It includes data from existing national databases and information provided by persons with ALS who choose to take part.
      • Researchers can use Registry data to look for disease pattern changes over time. They can also try to identify whether there are common risk factors among individuals with ALS.

      By joining the Registry and taking the risk factor surveys, individuals living with ALS will help provide a better picture of who gets ALS and risk factors for the disease.

      https://www.cdc.gov/als/ALSJoinALSRegistry.html

      https://www.cdc.gov/als/Default.html

      Google Search

      To see recent articles, use the “after:” option along with the year, month and day within your google search text.  Example below:

      after:2021-10-20 ALS treatment news

    • #20822
      Kathy stitz
      Participant

      Wow Richard! That’s quite an extensive list of information and resources.   Thank you so much for providing it.  I’m sure it will be helpful to the new members.  Welcome and please don’t hesitate to reach out for support! ALS is a devastating diagnosis and it can be a very isolating experience.   Know that you aren’t alone as you face this and we all want to help pALS and their loved ones and caregivers.

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