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| financial help for als patients: Augie's Quest Augie Nieto, T.R. Pearson, 2011-01-15 What happens to orphan diseases that aren't big enough profit centers for the pharmaceutical industry or get caught in the web of government funding and academic research? Augie Nieto found out in the spring of 2005: At forty-seven years old he was diagnosed with ALS. Devastated, Augie struggled with depression and attempted suicide. When he awoke from a coma, with friends and family surrounding him, his sense of faith and mission were renewed. Fast-forward one year: Augie and his wife, Lynne, were profiled as Real Heroes on the Today show. Their determination to beat the disease had already led to major overhauls in the way ALS research was conducted. In partnership with the Muscular Dystrophy Association, Augie had set up a foundation and lab to coordinate and oversee ALS research and testing across the globe. By centralizing operations and championing an entrepreneurial approach to medical research, Augie and his team accomplished remarkable results in less than two years. Part inspiration, part business innovation, Augie's Quest illustrates how one person can make a meaningful difference. Praise for Augie Nieto: George H. W. Bush, former U.S. president: Your contributions to the fitness industry are well known, and your dedication an inspiration. Lance Armstrong, seven-time Le Tour de France champion: I think it says a lot about Augie, the fact that everybody came together regardless of whether or not it's for competing gyms or competing companies that make equipment. They all say, this is one of our own; this is a guy who's committed his life to our industry and has been dealt a serious blow. We're going to be there for him, we're going to say, we're here for you and we're part of the Quest. Arnold Schwarzenegger, governor of California: Your success has been incredible. But you are so much more than just a successful businessman. You are the greatest husband, a great father, and a terrific friend. So, |
| financial help for als patients: The Ice Bucket Challenge Casey Sherman, Dave Wedge, 2017-09-05 The true story behind the Ice Bucket Challenge |
| financial help for als patients: Palliative Care in Amyotrophic Lateral Sclerosis David Oliver, Gian Domenico Borasio, Wendy Johnston, 2014-03-20 Amytrophic Lateral Sclerosis (ALS or motor neurone disease) is a progressive neurodegenerative disease that can cause profound suffering for both the patient and their family. Whilst new treatments for ALS are being developed, these are not curative and offer only the potential to slow its progression. Palliative care must therefore be integral to the clinical approach to the disease. Palliative Care in Amyotrophic Lateral Sclerosis: From diagnosis to bereavement reflects the wide scope of this care; it must cover not just the terminal phase, but support the patient and their family from the onset of the disease. Both the multidisciplinary palliative care team and the neurology team are essential in providing a high standard of care and allowing quality of life (both patient and carer) to be maintained. Clear guidelines are provided to address care throughout the disease process. Control of symptoms is covered alongside the psychosocial care of patients and their families. Case studies are used to emphasise the complexity of the care needs and involvement of the patient and family, culminating in discussion of bereavement. Different models of care are explored, and this new edition utilizes the increase in both the evidence-base and available literature on the subject. New topics discussed include complementary therapies, personal and family experiences of ALS, new genetics research, and updated guidelines for patient care, to ensure this new edition remains the essential guide to palliative care in ALS. |
| financial help for als patients: ALS Eliot H. Dunsky, MD Eliot H Dunsky, 2016-11-04 Eliot H. Dunsky, MD, is a retired physician who since his diagnosis in 2009 has been living with ALS, the complex, progressively debilitating disorder commonly known as Lou Gehrig's disease. Determined to maintain the best quality of life possible-for as long as possible-he extensively researched the condition and its management. As he immersed himself, talking to ALS patients and exploring emerging assistive technologies and aids, he realized that misunderstanding of this complicated disease was rife, preventing many from making the most of the precious years left. The result is this compilation of not only his personal experiences as his own condition advanced but also current research and links to additional specialized resources. Its aim is to help other patients learn to live with their diagnosis and navigate the day-to-day struggles associated with it. Appropriate symptom management can help fend off the devastating effects of the disease for a longer period of time. ALS: An Orientation offers a practical guide for patients and their families on maximizing quality of life through strategic care and, importantly, coping with the emotional toll the disease can take. A terminal diagnosis simply means savoring to the fullest the life that is still possible. |
| financial help for als patients: Public Policy in ALS/MND Care Robert H. Blank, Jerome E. Kurent, David Oliver, 2020 Anyone interested in ALS/MND-physician, patient, or healthcare policy director -should read this book and learn from it. -Walter G. Bradley D.M., F.R.C.P., Professor and Chairman Emeritus, Miller School of Medicine, University of Miami, USA This book illustrates the inequities in the accessibility of quality neurological care existing globally and which forms a major target for redress by the World Federation of Neurology and the World Health Organisation. -William M Carroll AM, MBBS, MD, FRACP, FRCP(E), President, World Federation of Neurology This book focuses on the public policy and political/ethical dimensions of ALS/MND across a wide selection of countries and argues for the need of a multidisciplinary and international approach. Policy issues addressed include adequacy of funding for research and care, payment policy and regulatory functions of public and private insurers, long-term services and caregiver support, public health and prevention efforts, access to genetic testing and assisted technologies, ensuring a competent and adequate workforce especially for hands-on caregivers, and the challenging issues of providing palliative and hospice care for ALS/MND patients, advance directives and assisted suicide that face policy makers in all political jurisdictions. Robert H. Blank, PhD, (University of Maryland) is an adjunct Professor of Political Science at the University of Canterbury in Christchurch, New Zealand. He has been a frequent guest professor at Aarhus University in Denmark and at National Taiwan University in Taipei, Taiwan, and a Research Scholar at New College Florida. Jerome E. Kurent received his MD from the University of Cincinnati College of Medicine and completed residencies in Neurology and Internal Medicine at the Johns Hopkins Hospital. He completed fellowships in neuromuscular diseases and electromyography at the National Institutes of Health, followed by a Geriatrics Medicine fellowship at Harvard where he also received his MPH. Dr. Kurent joined the Medical University of South Carolina faculty in 1984, and is Professor of Neurology, Medicine and Psychiatry and Behavioral Sciences. David Oliver, MD., recently retired as Consultant Physician in Palliative Medicine at the Wisdom Hospice in Rochester, Kent where he developed an integrated service over 32 years. He is an Honorary Professor at the Tizard Centre at the University of Kent, where he supervises students and is involved in research |
| financial help for als patients: The Invisible String Patrice Karst, 2025-01-07 With over 1.5 million copies sold, this accessible, bestselling picture book phenomenon about the unbreakable connections between loved ones has healed generations of children and adults alike. A Spanish edition (El hilo invisible by Patrice Karst and Joanne Lew-Vriethoff) and a companion workbook are also available (The Invisible String Workbook). Parents, educators, therapists, and social workers alike have declared The Invisible String the perfect tool for coping with all kinds of separation anxiety, loss, and grief. It's also been joyfully embraced as a year-round celebration of love--gifted at births, graduations, weddings, Valentine's Day, and beyond. In this relatable and reassuring contemporary classic, a mother tells her two children that they're all connected by an invisible string. That's impossible! the children insist, but still they want to know more: What kind of string? The answer is the simple truth that binds us all: An Invisible String made of love. Even though you can't see it with your eyes, you can feel it deep in your heart, and know that you are always connected to the ones you love. Does everybody have an Invisible String? How far does it reach? Does it ever go away? This heartwarming picture book for all ages explores questions about the intangible yet unbreakable connections between us, and opens up deeper conversations about love. Recommended and adopted by parenting blogs, bereavement support groups, hospice centers, foster care and social service agencies, military library services, church groups, and educators, The Invisible String offers a very simple approach to overcoming loneliness, separation, or loss with an imaginative twist that children easily understand and embrace, and delivers a particularly compelling message in today's uncertain times. This special paperback edition includes vibrant new illustrations and an introduction from the author. Recommended by Oprah Daily! This book is a beautiful way to begin to try, as parents, to instill in children the impenetrable power of the heart, the energy of love, and the flow that can be felt from the grace in every moment. —Tony Robbins Read all the books in The Invisible String series: The Invisible String Backpack: Your very own tool kit for school—and life! The Invisible String Workbook: Creative Activities to Comfort, Calm, and Connect The Invisible Leash: An Invisible String Story About the Loss of a Pet The Invisible Web: An Invisible String Story Celebrating Love and Universal Connection You Are Never Alone: An Invisible String Lullaby |
| financial help for als patients: Model Rules of Professional Conduct American Bar Association. House of Delegates, Center for Professional Responsibility (American Bar Association), 2007 The Model Rules of Professional Conduct provides an up-to-date resource for information on legal ethics. Federal, state and local courts in all jurisdictions look to the Rules for guidance in solving lawyer malpractice cases, disciplinary actions, disqualification issues, sanctions questions and much more. In this volume, black-letter Rules of Professional Conduct are followed by numbered Comments that explain each Rule's purpose and provide suggestions for its practical application. The Rules will help you identify proper conduct in a variety of given situations, review those instances where discretionary action is possible, and define the nature of the relationship between you and your clients, colleagues and the courts. |
| financial help for als patients: What You Need to Know about ALS Harry LeVine III, 2019-10-11 This book offers an accessibly written introduction to ALS, focusing on the topics that matter most to anyone whose life has been affected—directly or indirectly—by this condition. Amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease, is a neurodegenerative disease that affects the motor neurons that drive voluntary movement. Those diagnosed with ALS experience difficulty moving and speaking and, as the condition worsens, difficulty swallowing and breathing. Beyond this definition, however, what do those affected by ALS need to know? What You Need to Know about ALS is a part of Greenwood's Inside Diseases and Disorders series. This series profiles a variety of physical and psychological conditions, and distills vast collections of scientific knowledge into concise, readable volumes. A list of Top 10 essential questions begins each book, providing quick-access answers to readers' concerns. The text follows a standardized structure, with each chapter exploring a particular facet of the topic. In addition to covering causes, signs and symptoms, diagnosis, and treatment options, books in this series delve into issues that are less commonly addressed but still critical to understand, such as effects on loved ones and caregivers. Case illustrations highlight key themes discussed in the book and are accompanied by insightful analyses and recommendations. |
| financial help for als patients: The Global Findex Database 2017 Asli Demirguc-Kunt, Leora Klapper, Dorothe Singer, Saniya Ansar, 2018-04-19 In 2011 the World Bank—with funding from the Bill and Melinda Gates Foundation—launched the Global Findex database, the world's most comprehensive data set on how adults save, borrow, make payments, and manage risk. Drawing on survey data collected in collaboration with Gallup, Inc., the Global Findex database covers more than 140 economies around the world. The initial survey round was followed by a second one in 2014 and by a third in 2017. Compiled using nationally representative surveys of more than 150,000 adults age 15 and above in over 140 economies, The Global Findex Database 2017: Measuring Financial Inclusion and the Fintech Revolution includes updated indicators on access to and use of formal and informal financial services. It has additional data on the use of financial technology (or fintech), including the use of mobile phones and the Internet to conduct financial transactions. The data reveal opportunities to expand access to financial services among people who do not have an account—the unbanked—as well as to promote greater use of digital financial services among those who do have an account. The Global Findex database has become a mainstay of global efforts to promote financial inclusion. In addition to being widely cited by scholars and development practitioners, Global Findex data are used to track progress toward the World Bank goal of Universal Financial Access by 2020 and the United Nations Sustainable Development Goals. The database, the full text of the report, and the underlying country-level data for all figures—along with the questionnaire, the survey methodology, and other relevant materials—are available at www.worldbank.org/globalfindex. |
| financial help for als patients: Lou Gehrig Disease, Als Or Amyotrophic Lateral Sclerosis Explained. Als Symptoms, Signs, Stages, Types, Diagnosis, Treatment, Caregiver Tips, Aids And Robert Rymore, 2013-08-01 The author, Robert Rymore, had a good friend who was diagnosed with Lou Gehrig Disease. He wanted to be able to help her and decided to buy some books about the disease. To his disappointment there was a lack of good informative books available on the subject. He decided to investigate the subject thoroughly and write a book about it to be able to help others. He decided he would start talking to professionals - doctors, physical therapists, speech therapists and occupational therapists - to learn more. He quickly realized the information he was getting would be extremely valuable for other people with ALS and their loved ones. This book has been a labor of love, one born of necessity and certainly one that aims to help those with ALS, their families, and their friends. ALS symptoms, signs, stages, types, diagnosis, treatment, caregiver tips, aids and what to expect is all covered. Including chapters about financial considerations, famous people with Lou Gehrig Disease and resources. The book is written in an easy to read and understandable style and contains tips for caregivers. |
| financial help for als patients: Autoimmune Neurology , 2016-03-11 Autoimmune Neurology presents the latest information on autoimmune neurologic disease, the immune response to the body where organs run wild, causing the immune system to attack itself. Autoimmunity is a main element in numerous nervous system diseases and can target any structure within the central or peripheral nervous system. Over the past 20 years, significant advances in our understanding of the pathophysiology of autoimmune disorders, including the use of biomarkers has led to new diagnosis and treatment options. Neurologic conditions associated with autoimmune reactions include dementia, neuromuscular disease, epilepsy, sleep disorders, diabetes, and other common neurologic disorders and disease. This current tutorial-reference will be a must-have title for clinical neurologists, research neurologists, neuroscientists, and any medical professional working with autoimmune disease and disorders. - Includes comprehensive coverage of autoimmune neurology - Details the latest techniques for the study, diagnosis, and treatment of diseases and disorders, including dementia, neuromuscular disease, epilepsy, and sleep disorders - Presents a focused reference for clinical practitioners and the clinical neurology and neurology research communities |
| financial help for als patients: Navigating Life with Amyotrophic Lateral Sclerosis Mark B. Bromberg, Diane Banks Bromberg, 2017 Navigating Life with Amyotrophic Lateral Sclerosis provides accessible, comprehensive, and up-to-date information about the challenges patients, family members, and caregivers face when confronted by ALS. This guide covers all aspects of managing ALS, from the onset of symptoms, diagnosis, treatments, and coping strategies, to the use of home health care or hospice, and new research in the field. The book also sheds lights on difficult topics, such as end-of-life care and managing legal affairs. Formatted in a question-and-answer style, peppered throughout with patient stories, and with sections devoted to family members and caregivers, this compassionate resource provides guidance to those seeking to understand how to live with this disease. |
| financial help for als patients: Registries for Evaluating Patient Outcomes Agency for Healthcare Research and Quality/AHRQ, 2014-04-01 This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews. |
| financial help for als patients: Telemedicine and Telehealth Adam William Darkins, Margaret Ann Cary, 2000-03 Telemedicine and telehealth are changing the face of health care delivery and becoming a multi-billion dollar industry. Dr. Darkins and Dr. Cary share their knowledge and provide practical insights and advice on making telemedicine programs into successful clinical services and a productive business. The book gives background knowledge and useful tips on starting up and managing programs in an array of settings. Most importantly, the book is based on the recognition that patients are customers of health care and telemedicine companies developing new products vital to delivering care to rural or inaccessible clients is vital to health care's future. |
| financial help for als patients: Healthcare Finance Andrew W. Lo, Shomesh E. Chaudhuri, 2022-11-15 Why healthcare finance? -- From the laboratory to the patient -- Present value relations -- Evaluating business opportunities -- Valuing bonds -- Valuing stocks -- Portfolio management and the cost of capital -- Therapeutic development and clinical trials -- Decision trees and real options -- Monte Carlo simulation -- Healthcare analytics -- Biotech venture capital -- Securitizing biomedical assets -- Pricing, value, and ethics -- Epilogue : a case study pf royalty pharma. |
| financial help for als patients: Respiratory Management of ALS Lee Guion, 2010-10-25 The Respiratory Management of Motor Neuron Disease brings together the latest research, expert opinions, and treatment options for respiratory symptom management. It provides a detailed, step-by-step approach to assessment of upper and lower airway structures and how motor neuron loss impairs function. Treatment options emphasize symptom management and enhanced quality of life. Palliative care, end-of-life decision making, and long term mechanical ventilation in patients with MND/ALS are included.This textbook encourages critical thinking through 1) inclusion of researchable questions at the end of chapters, and 2) discussion of different approaches to patient assessment and symptom management when medical evidence is lacking. Students will be encouraged to use their understanding of anatomy, physiology, pharmacology, lung expansion and secretion mobilization techniques to review, support or challenge current practices in MND/ALS. Respiratory therapy students, respiratory care practitioners, nurses in neurology clinics, primary care physicians, and pulmonologists whose practice includes patients with motor neuron disease will all benefit from the detailed review of bulbar and thoracic muscles, loss of function, and treatment recommendations. |
| financial help for als patients: Government Finance Statistics Manual 2014 Mrs.Sage De Clerck, Tobias Wickens, 2015-03-10 The 2007–09 international financial crisis underscored the importance of reliable and timely statistics on the general government and public sectors. Government finance statistics are a basis for fiscal analysis and they play a vital role in developing and monitoring sound fiscal programs and in conducting surveillance of economic policies. The Government Finance Statistics Manual 2014 represents a major step forward in clarifying the standards for compiling and presenting fiscal statistics and strengthens the worldwide effort to improve public sector reporting and transparency. |
| financial help for als patients: Repairing Your Flooded Home , 2010 When in doubt, throw it out. Don't risk injury or infection. 2: Ask for help. Many people can do a lot of the cleanup and repairs discussed in this book. But if you have technical questions or do not feel comfortable doing something, get professional help. If there is a federal disaster declaration, a telephone hotline will often be publicized to provide information about public, private, and voluntary agency programs to help you recover from the flood. Government disaster programs are there to help you, the taxpayer. You're paying for them; check them out. 3: Floodproof. It is very likely that your home will be flooded again someday. Floodproofing means using materials and practices that will prevent or minimize flood damage in the future. Many floodproofing techniques are inexpensive or can be easily incorporated into your rebuilding program. You can save a lot of money by floodproofing as you repair and rebuild (see Step 8). |
| financial help for als patients: Ask a Manager Alison Green, 2018-05-01 From the creator of the popular website Ask a Manager and New York’s work-advice columnist comes a witty, practical guide to 200 difficult professional conversations—featuring all-new advice! There’s a reason Alison Green has been called “the Dear Abby of the work world.” Ten years as a workplace-advice columnist have taught her that people avoid awkward conversations in the office because they simply don’t know what to say. Thankfully, Green does—and in this incredibly helpful book, she tackles the tough discussions you may need to have during your career. You’ll learn what to say when • coworkers push their work on you—then take credit for it • you accidentally trash-talk someone in an email then hit “reply all” • you’re being micromanaged—or not being managed at all • you catch a colleague in a lie • your boss seems unhappy with your work • your cubemate’s loud speakerphone is making you homicidal • you got drunk at the holiday party Praise for Ask a Manager “A must-read for anyone who works . . . [Alison Green’s] advice boils down to the idea that you should be professional (even when others are not) and that communicating in a straightforward manner with candor and kindness will get you far, no matter where you work.”—Booklist (starred review) “The author’s friendly, warm, no-nonsense writing is a pleasure to read, and her advice can be widely applied to relationships in all areas of readers’ lives. Ideal for anyone new to the job market or new to management, or anyone hoping to improve their work experience.”—Library Journal (starred review) “I am a huge fan of Alison Green’s Ask a Manager column. This book is even better. It teaches us how to deal with many of the most vexing big and little problems in our workplaces—and to do so with grace, confidence, and a sense of humor.”—Robert Sutton, Stanford professor and author of The No Asshole Rule and The Asshole Survival Guide “Ask a Manager is the ultimate playbook for navigating the traditional workforce in a diplomatic but firm way.”—Erin Lowry, author of Broke Millennial: Stop Scraping By and Get Your Financial Life Together |
| financial help for als patients: Amyotrophic Lateral Sclerosis Hiroshi Mitsumoto, MD, 2009-03-16 ALS, also known as Lou Gehrig's disease, cannot be cured but it can be treated. A great deal can be done to treat the symptoms of ALS, to improve an individual's quality of life, and to help families, caregivers, and loved ones to cope with the disease. This extensively revised and rewritten new edition of the bestselling Amyotrophic Lateral Sclerosis: A Guide For Patients and Families addresses all of those needs, and brings up-to-date important information to those living with the reality of ALS. The book is completely revised throughout and contains NEW information on: Recently developed approaches to treating ALS symptoms Use of non-invasive ventilators Multidisciplinary team care New guidelines being developed by the American Academy of Neurology for patients with ALS The use of riluzole (Rilutek) to treat ALS Amyotrophic Lateral Sclerosis covers every aspect of the management of ALS, from clinical features of the disease, to diagnosis, to an overview of symptom management. Major sections deal with medical and rehabilitative management, living with ALS, managing advanced disease, end-of-life issues, and resources that can provide support and assistance in this time of need. |
| financial help for als patients: Improving Healthcare Quality in Europe Characteristics, Effectiveness and Implementation of Different Strategies OECD, World Health Organization, 2019-10-17 This volume, developed by the Observatory together with OECD, provides an overall conceptual framework for understanding and applying strategies aimed at improving quality of care. Crucially, it summarizes available evidence on different quality strategies and provides recommendations for their implementation. This book is intended to help policy-makers to understand concepts of quality and to support them to evaluate single strategies and combinations of strategies. |
| financial help for als patients: Physician-Assisted Death James M. Humber, Robert F. Almeder, Gregg A. Kasting, 1994-02-04 Physician-Assisted Death is the eleventh volume of Biomedical Ethics Reviews. We, the editors, are pleased with the response to the series over the years and, as a result, are happy to continue into a second decade with the same general purpose and zeal. As in the past, contributors to projected volumes have been asked to summarize the nature of the literature, the prevailing attitudes and arguments, and then to advance the discussion in some way by staking out and arguing forcefully for some basic position on the topic targeted for discussion. For the present volume on Physician-Assisted Death, we felt it wise to enlist the services of a guest editor, Dr. Gregg A. Kasting, a practicing physician with extensive clinical knowledge of the various problems and issues encountered in discussing physician assisted death. Dr. Kasting is also our student and just completing a graduate degree in philosophy with a specialty in biomedical ethics here at Georgia State University. Apart from a keen interest in the topic, Dr. Kasting has published good work in the area and has, in our opinion, done an excellent job in taking on the lion's share of editing this well-balanced and probing set of essays. We hope you will agree that this volume significantly advances the level of discussion on physician-assisted euthanasia. Incidentally, we wish to note that the essays in this volume were all finished and committed to press by January 1993. |
| financial help for als patients: Rick's Reflections , |
| financial help for als patients: The Federal Reserve System Purposes and Functions Board of Governors of the Federal Reserve System, 2002 Provides an in-depth overview of the Federal Reserve System, including information about monetary policy and the economy, the Federal Reserve in the international sphere, supervision and regulation, consumer and community affairs and services offered by Reserve Banks. Contains several appendixes, including a brief explanation of Federal Reserve regulations, a glossary of terms, and a list of additional publications. |
| financial help for als patients: Understanding SSI (Supplemental Security Income) , 1998-03 This publication informs advocates & others in interested agencies & organizations about supplemental security income (SSI) eligibility requirements & processes. It will assist you in helping people apply for, establish eligibility for, & continue to receive SSI benefits for as long as they remain eligible. This publication can also be used as a training manual & as a reference tool. Discusses those who are blind or disabled, living arrangements, overpayments, the appeals process, application process, eligibility requirements, SSI resources, documents you will need when you apply, work incentives, & much more. |
| financial help for als patients: Disease Control Priorities, Third Edition (Volume 1) Haile T. Debas, Peter Donkor, Atul Gawande, Dean T. Jamison, Margaret E. Kruk, Charles N. Mock, 2015-03-23 Essential Surgery is part of a nine volume series for Disease Control Priorities which focuses on health interventions intended to reduce morbidity and mortality. The Essential Surgery volume focuses on four key aspects including global financial responsibility, emergency procedures, essential services organization and cost analysis. |
| financial help for als patients: Noninvasive Mechanical Ventilation John R. Bach, 2002 In addition, patients with neuromuscular and lung disorders prefer noninvasive means over tracheal intubation and tracheostomy for ventilatory support and secretion management. This book presents the various noninvasive inspiratory and expiratory muscle aids and the outcomes of their use in patients with respiratory muscle dysfunction. It describes treatment and rehabilitation interventions specific for patients with these conditions.--BOOK JACKET. |
| financial help for als patients: Spy of the First Person Sam Shepard, 2017-12-05 The final work from the Pulitzer Prize–winning writer, actor, and musician, drawn from his transformative last days In searing, beautiful prose, Sam Shepard’s extraordinary narrative leaps off the page with its immediacy and power. It tells in a brilliant braid of voices the story of an unnamed narrator who traces, before our rapt eyes, his memories of work, adventure, and travel as he undergoes medical tests and treatments for a condition that is rendering him more and more dependent on the loved ones who are caring for him. The narrator’s memories and preoccupations often echo those of our current moment—for here are stories of immigration and community, inclusion and exclusion, suspicion and trust. But at the book’s core, and his, is family—his relationships with those he loved, and with the natural world around him. Vivid, haunting, and deeply moving, Spy of the First Person takes us from the sculpted gardens of a renowned clinic in Arizona to the blue waters surrounding Alcatraz, from a New Mexico border town to a condemned building on New York City’s Avenue C. It is an unflinching expression of the vulnerabilities that make us human—and an unbound celebration of family and life. |
| financial help for als patients: Financial Assistance by Geographic Area , 1978 |
| financial help for als patients: Someone I Love Has ALS Jodi O'Donnell-Ames, Terry Heiman-Patterson, 2015-09-09 Kevin and Jodi O'Donnell, were a young New Jersey couple busy raising a toddler and making plans for their future when they received life-altering news in 1995 that changed everything as they knew it. Kevin was only 30 years old when he was told that his health problems were the result of a rare, terminal disease called ALS (Amyotrophic Lateral Sclerosis), or Lou Gehrig's disease. Kevin and Jodi had not heard of ALS until then and had no idea how those three letters would challenge everything they thought to be certain. After more than 20 years of working with ALS families, Jodi realized that more information and better resources could be available to help families who are coming to grips with the challenges of the disease and the caregiving responsibilities that are involved. In the Introduction to Someone I Love Has ALS: A Family Caregiver's Guide, Jodi recounts the journey she took as a caregiver, advocate and writer and embraces and shares the lessons learned throughout the pages of this wonderful guide, This guide was created by a variety of caregivers and professionals who have years of experience with various aspects of ALS. It was written by volunteers and experts who care about ALS and your journey. It is the resource that I wish we had received along with the shocking diagnosis. Although Kevin died of ALS in 2001 at the age 35, the disease never won the battle. ALS only strengthened Kevin and Jodi's love for God and each other and it created an even bigger purpose and plan: the creation of Hope Loves Company(r), the only non-profit whose mission is to support the children and grandchildren caregivers of PALS (people with ALS). |
| financial help for als patients: We Know How This Ends Bruce H. Kramer, Cathy Wurzer, 2015-04-01 Nautilus Book Awards — Silver Award Winner 2010 had been a very good year for Bruce H. Kramer. But what began as a floppy foot and leg weakness led to a shattering diagnosis: he had amyotrophic lateral sclerosis. ALS is a cruel, unrelenting neurodegenerative disease in which the body’s muscles slowly weaken, including those used to move, swallow, talk, and ultimately breathe. There is no cure: ALS is a death sentence. When death is a constant companion, sitting too closely beside you at the dinner table, coloring your thoughts and feelings and words, your outlook on life is utterly transformed. The perspective and insights offered in We Know How This Ends reveal this daily reality and inspire a way forward for anyone who has suffered major loss and for anyone who surely will. Rather than wallowing in sadness and bitterness, anger and denial, Kramer accepted the crushing diagnosis. The educator and musician recognized that if he wanted a meaningful life, then embracing his imminent death was his only viable option. His decision was the foundation for profound, personal reflection and growth, even as his body weakened, and inspired him to share the lessons he was learning from ALS about how to live as fully as possible, even in the midst of devastating grief. At the time Kramer was diagnosed, broadcast journalist Cathy Wurzer was struggling with her own losses, especially her father’s slow descent into the bewildering world of dementia. Mutual friends put this unlikely pair—journalist and educator—together, and the serendipitous result has been a series of remarkable broadcast conversations, a deep friendship, and now this book. Written with wisdom, genuine humor, and down-to-earth observations, We Know How This Ends is far more than a memoir. It is a dignified, courageous, and unflinching look at how acceptance of loss and inevitable death can lead us all to a more meaningful and fulfilling life. |
| financial help for als patients: Chart of Accounts Sailendra Pattanayak, Julie Patricia Cooper, 2011-10-17 This technical note and manual (TNM) addresses the following main issues: • Discusses the purpose of a chart of accounts and its importance in public financial management • Discusses stakeholder needs in a typical public financial management framework that need to be reflected in a chart of accounts • Discusses the role of chart of accounts in budgetary and financial accounting • Discusses the relation between the chart of accounts and IFMIS • Explains key steps for identifying data requirements and structures for developing a chart of accounts |
| financial help for als patients: Amyotrophic Lateral Sclerosis Hiroshi Mitsumoto, David A. Chad, Erik P. Pioro, 1998 This volume provides comprehensive background for understanding amyotrophic lateral sclerosis (ALS) and a critical review of research. It points out the distinguishing characteristics of the disease and testing procedures for reliable diagnosis. |
| financial help for als patients: Neurology in Clinical Practice Walter George Bradley, 2004 New edition, completely rewritten, with new chapters on endovascular surgery and mitochrondrial and ion channel disorders. |
| financial help for als patients: Global Trends 2040 National Intelligence Council, 2021-03 The ongoing COVID-19 pandemic marks the most significant, singular global disruption since World War II, with health, economic, political, and security implications that will ripple for years to come. -Global Trends 2040 (2021) Global Trends 2040-A More Contested World (2021), released by the US National Intelligence Council, is the latest report in its series of reports starting in 1997 about megatrends and the world's future. This report, strongly influenced by the COVID-19 pandemic, paints a bleak picture of the future and describes a contested, fragmented and turbulent world. It specifically discusses the four main trends that will shape tomorrow's world: - Demographics-by 2040, 1.4 billion people will be added mostly in Africa and South Asia. - Economics-increased government debt and concentrated economic power will escalate problems for the poor and middleclass. - Climate-a hotter world will increase water, food, and health insecurity. - Technology-the emergence of new technologies could both solve and cause problems for human life. Students of trends, policymakers, entrepreneurs, academics, journalists and anyone eager for a glimpse into the next decades, will find this report, with colored graphs, essential reading. |
| financial help for als patients: The Promise of Assistive Technology to Enhance Activity and Work Participation National Academies of Sciences, Engineering, and Medicine, Health and Medicine Division, Board on Health Care Services, Committee on the Use of Selected Assistive Products and Technologies in Eliminating or Reducing the Effects of Impairments, 2017-09-01 The U.S. Census Bureau has reported that 56.7 million Americans had some type of disability in 2010, which represents 18.7 percent of the civilian noninstitutionalized population included in the 2010 Survey of Income and Program Participation. The U.S. Social Security Administration (SSA) provides disability benefits through the Social Security Disability Insurance (SSDI) program and the Supplemental Security Income (SSI) program. As of December 2015, approximately 11 million individuals were SSDI beneficiaries, and about 8 million were SSI beneficiaries. SSA currently considers assistive devices in the nonmedical and medical areas of its program guidelines. During determinations of substantial gainful activity and income eligibility for SSI benefits, the reasonable cost of items, devices, or services applicants need to enable them to work with their impairment is subtracted from eligible earnings, even if those items or services are used for activities of daily living in addition to work. In addition, SSA considers assistive devices in its medical disability determination process and assessment of work capacity. The Promise of Assistive Technology to Enhance Activity and Work Participation provides an analysis of selected assistive products and technologies, including wheeled and seated mobility devices, upper-extremity prostheses, and products and technologies selected by the committee that pertain to hearing and to communication and speech in adults. |
| financial help for als patients: The Deanna Protocol Vincent Tedone, Deanna Tedone, Chiara Tedone, 2015-07-10 The authors are in a life and death struggle against a terrible disease, Amyotrophic Lateral Sclerosis, which is referred to as ALS or Lou Gehrig's disease. If you or a loved one have been diagnosed with ALS, then you need to read this book. The Deanna Protocol® program was discovered by Dr. Tedone, Deanna's father, only after failing, again and again, with everything that he tried. The massage, non-exhausting exercise and core supplements, which are inexpensive and available without prescription from many suppliers. The program works for many ALS patients. It is not a cure, however, it provides a better quality of life and has been shown in ALS mice to extend life and improve motor skills. The rate of progression of ALS symptoms reported in ALSFRS scores, is markedly reduced in those adhering to the Deanna Protocol® program. There a few side effects reported, and those are manageable for most, if the program is phased in, gradually, over time. |
| financial help for als patients: The Tumor John Grisham, Focused Ultrasound Foundation, 2015-03 John Grisham says THE TUMOR is the most important book he has ever written. In this short book, he provides readers with a fictional account of how a real, new medical technology could revolutionize the future of medicine by curing with sound. THE TUMOR follows the present day experience of the fictional patient Paul, an otherwise healthy 35-year-old father who is diagnosed with a malignant brain tumor. Grisham takes readers through a detailed account of Paul’s treatment and his family’s experience that doesn’t end as we would hope. Grisham then explores an alternate future, where Paul is diagnosed with the same brain tumor at the same age, but in the year 2025, when a treatment called focused ultrasound is able to extend his life expectancy. Focused ultrasound has the potential to treat not just brain tumors, but many other disorders, including Parkinson’s, Alzheimer’s, hypertension, and prostate, breast and pancreatic cancer. For more information or to order a free hardcopy of the book, please visit The Focused Ultrasound Foundation’s website www.fusfoundation.org. Here you will find a video of Grisham on the TEDx stage with the Foundation’s chairman and a Parkinson’s patient who brings the audience to its feet sharing her incredible story of a focused ultrasound “miracle.” Readers will get a taste of the narrative they expect from Grisham, but this short book will also educate and inspire people to be hopeful about the future of medical innovation. |
| financial help for als patients: Fostering Student Success Sigrid Kelsey, 2022 In this book, academic librarians examine how their libraries are responding to the changing needs of students to provide support in key areas such as advancing the quality of learning, fostering inclusion, and driving down costs-- |
| financial help for als patients: Funding the Cooperative City Daniela Patti, Levente Polyák, 2017 |
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