Resources for Those with Acute Neurological Injury (ANI)
Books
Dr. Brad Berk's New Book - Published July 13!
Getting Your Brain & Body Back: Everything You Need to Know After Spinal Cord Injury, Stroke, or Traumatic Brain Injury
This self-help book is for patients, families, and care givers of persons with acute neurological injuries (ANI). In Getting Your Brain & Body Back, Dr. Berk covers each system, offering up-to-date guidance on recovery, treatment, and daily living. Survivors and families will learn how to prevent common problems, find (and pay for) life-changing rehab, ward off depression, return to work, and much more. By sharing candid advice from his own experience, plus insights from the brightest minds in the field, Dr. Berk helps others get back to life.
For Everyone with an ANI
- Life on wheels: The A to Z Guide to Living Fully with Mobility Issues, Second Edition, by Gary Karp; 477 pages; Demos Health.
- The brain that changes itself: Stories of Personal Triumph from the Frontiers of Brain Science, by Norman Doidge, MD; 448 pages; Viking.
- The brain’s way of healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity, by Norman Doidge, MD; 409 pages; Viking.
- Hope heals: A True Story of Overwhelming Loss and an Overcoming Love, by Katherine & Jay Wolf; 256 pages; Zondervan.
- Over my head: A Doctor’s Own Story of Head Injury from the Inside Looking Out, by Claudia L. Osborn; 239 pages; Andrews McMeel Publishing.
Specific for Spinal Cord Injury (SCI)
- Mayo clinic guide to living with a spinal cord injury: Moving Ahead with Your Life, Mayo Clinic; 200 pages; Demos Health.
- Spinal cord injury: A Guide for Living Second Edition, by Sara Palmer PhD, Kay Harris Kriegsman PhD & Jeffrey B. Palmer MD; 376 pages; John Hopkins University Press.
- Spinal cord Medicine: Comprehensive Evidence-Based Clinical Reference for Diagnosis and Treatment of Spinal Cord Injuries and Conditions, Steven Kirshblum MD & Vernon W. Lin PhD; 1043 pages
Specific for Traumatic Brain Injury (TBI)
- Mindstorms: The Complete Guide for Families Living with Traumatic Brain Injury, by John W. Cassidy; 256 pages; Da Capo Lifelong Books.
- The Traumatized Brain: A Family Guide to Understanding Mood, Memory, and Behavior after Brain Injury (A Johns Hopkins Press Health Book) Illustrated Edition by Vani Rao (Author), Sandeep Vaishnavi (Author), Peter V. Rabins (Foreword)
- Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries: 101 Stories of Hope, Healing, and Hard Work, Paperback – June 24, 2014 by Amy Newmark (Author), Dr. Carolyn Roy-Bornstein (Author), Lee Woodruff (Foreword)
- The Concussion Repair Manual: A Practical Guide to Recovering from Traumatic Brain Injuries, Kindle Edition by Dr. Dan Engle (Author)
Specific for Stoke
- Stronger after stroke: Your Roadmap to Recovery, by Peter G. Levine; 296 pages; Demos Health.
- My stroke of insight: A Brain Scientist’s Personal Journey, by Jill Bolte Taylor, Ph.D.; 192 pages; Viking.
- Never give up: My Stroke, My Recovery & My Return to the NFL, by Tedy Bruschi; 288 pages; Wiley.
Websites
For Everyone with an ANI
- Americans with Disability Act
- Centers for Disease Control and Prevention (CDC)
- Clinical trials
- Mayo Clinic
- National Institutes of Health
- National Heart Lung and Blood Institute (NHLBI)
- National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)
- National Institute of Mental Health (NIMH)
- National Institute for Neurologic Disorders and Stroke (NINDS)
- National Center for Complementary and Integrative Health (NCCIH)
- Paralysis Resource Guide
- Peripheral Nerve Disorders
- Peripheral Neuropathy Fact Sheet
- The Reeve Foundation
- United Spinal Association
- UpToDate
- U.S. Department of Veterans Affairs: Rehabilitation Research and Development Service
Specific for Spinal Cord Injury (SCI)
- Paralyzed Veterans of America (PVA)
- United Spinal Association
- Miami Project
- Abilities not disabilities Facebook group
- SCI survivors Facebook group
- Spinal Cord Journal and International Spinal Cord Society (ISCoS)
- Spinal Cord Injury USA Facebook group
- Spinal Cord Resource Center
- WAGS of SCI, Facebook group for wives and girlfriends of spinal cord injured
- Wheelchairmafia
Specific for Stroke
- American Stroke Association and American Heart Association
- Stroke Survivors Facebook group
- Life After Stroke Facebook group
- Stroke Recovery Support Facebook group
- The Centers for Disease Control and Prevention
Specific for Traumatic Brain Injury (TBI)
- The Brain Injury Association of America
- Traumatic Brain Injury.com
- Love Your Brain
- The Centers for Disease Control and Prevention: HEADS UP on Brain Injury Basics, which includes how to diagnose a concussion, and specific recommendations for return to school, and return to sports
- Traumatic Brain Injury Support Facebook group
- TBI Hope & Inspiration Facebook group
- Traumatic Brain Injury Healing and Recovering Support Facebook group
- Traumatic Brain Injury Awareness and Support Facebook group
Websites and Books on Specific Topics for all ANI
Advocacy
- Americans Disabled for Attendant Programs Today (ADAPT), a national grassroots community that works to assure the civil and human rights of people with disabilities
- American Association of People with Disabilities (AAPD), a national voice for change in implementing the goals of the ADA
- Patient Advocate Foundation (PAF)
Diets, Eating Plans, Nutrition, RDAs
- DASH Eating Plan
- What is the Mediterranean Diet?
- A Consumer's Guide to the DRIs (Dietary Reference Intakes)
- How Not to Die by Michael Greger
- The Obesity Code by Jason Fung
- The Complete Anti-Inflammatory Diet for Beginners by Dorothy Calimeris
- The China Study Solution: The Simple Way to Lose Weight and Reverse Illness, Using a Whole-Food, Plant-Based Diet by Tom Campbell
Disability Products & Services
- United Spinal Association Disability Products & Services Directory
- Assistive Technology Industry Association (ATIA)
Employment Resources, Disability Rights, and Work Incentives
- Department of Vocational Rehabilitation in your state is usually the best site to find programs that you are qualified to participate.
- Rehabilitation Services Administration (RSA) is part of the US Department of Education. It has many programs to assist people with disabilities including disability employment programs that work with state vocational rehabilitation services and state supported employment services.
- Programs that protect you from discrimination in the work-place include:
- United States Equal Employment Opportunity Commission (EEOC)
- Disability and Business Technical Assistance Centers. There are 10 Regional centers Supported as part of the ADA National Network funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). The centers promote voluntary compliance with the Americans with Disabilities Act (ADA) by providing three core services — technical assistance, training and materials dissemination.
- Fair Employment Practice Agency (FEPA). Many states, counties, cities, and towns have their own laws prohibiting discrimination, as well as agencies responsible for enforcing those laws. Usually the laws enforced by these agencies are similar to those enforced by EEOC.
- Ticket to Work and Work Incentives Improvement Act is a Federally-funded employment program designed to provide Social Security disability beneficiaries (i.e., individuals receiving SSDI and/or SSI benefits based on disability) the choices, opportunities and support they need to enter the workforce and maintain employment with the goal of becoming economically self-supporting over time.
Health Insurance and Financial Support
- PASS (Social Security Administration’s Plan to Achieve Self-Support)
- SSDI (Social Security Disability Income)
- SSI (Supplemental Security Income) (PASS)
Medications
- Patient Advocate Foundation is a national organization that can help you negotiate bills with hospitals, doctors, and insurance companies
- Partnership for Prescription Assistance is a clearinghouse for more than 475 public and private assistance programs, it includes nearly 200 pharmaceutical options