Resources

General Resources for All ANIs

Books

Gary Karp. Life on Wheels: The A to Z Guide to Living Fully with Mobility Issues, second edition. New York: Demos Health, 2008.

Norman Doidge, MD. The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science, reprint edition. New York: Penguin, 2007.

Norman Doidge, MD. The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity, updated edition. New York: Penguin, 2016.

Websites

Americans with Disability Act: ada.gov

Centers for Disease Control and Prevention (CDC): cdc.gov

Clinical trials: clinicaltrials.gov

Mayo Clinic: mayoclinic.org

National Institutes of Health: nih.gov

National Heart, Lung, and Blood Institute (NHLBI): nhlbi.nih.gov

National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR): acl.gov

National Institute of Mental Health (NIMH): nimh.nih.gov

National Institute for Neurologic Disorders and Stroke (NINDS): ninds.nih.gov

National Center for Complementary and Integrative Health (NCCIH): nccih.nih.gov

Christopher and Dana Reeve Foundation: christopherreeve.org/living-with-paralysis/free-resources-and-downloads/paralysis-resource-guide

UpToDate: uptodate.com

US Department of Veterans Affairs: Office of Research and Development: research.va.gov

Books and Websites on Specific Topics

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: adapt.org

- American Association of People with Disabilities (AAPD), a national voice for change in implementing the goals of the ADA: aapd.com

- Patient Advocate Foundation (PAF): patientadvocate.org

Diets, Eating Plans, Nutrition, RDAs:

- nhlbi.nih.gov/health-topics/dash-eating-plan

- heart.org/en/healthy-living/healthy-eating/eat-smart/nutrition-basics/mediterranean-diet

- canada.ca/en/health-canada/services/food-nutrition/healthy-eating/dietary-reference-intakes/consumer-guide-dris-dietary-reference-intakes.html; obtain a PDF of A Consumer’s Guide to the DRIs (Dietary Reference Intakes)

- Michael Greger, MD. How Not to Die: Discover the Foods Scientifically Proven to Prevent and Reverse Disease. New York: Flatiron Books, 2015.

- Jason Fung, MD. The Obesity Code: Unlocking the Secrets of Weight Loss. Vancouver, BC: Greystone Books, 2016.

- Dorothy Calimeris and Lulu Cook, RDN. The Complete Anti-Inflammatory Diet for Beginners. Emeryville, CA: Rockridge Press, 2017.

- Thomas Campbell, MD. The China Study Solution: The Simple Way to Lose Weight and Reverse Illness, Using a Whole-Food, Plant-Based Diet. Emmaus, PA: Rodale, 2016.

Disability Products & Services

- Amazon has the most comprehensive site for disability products in its health section. I purchase all of my disposable medical and supplies (e.g., pads, OTC supplements, vitamin C, melatonin, Tylenol, gloves, and so on) via amazon.com.

- United Spinal Association Disability Products & Services Directory: askus-resource-center.unitedspinal.org/index.php?pg=kb.page&id=3168

- Assistive Technology Industry Association: atia.org/home/at-resources

- Accessible and inclusive fashion:

kizik.com (hands-free sneakers)

seasaltcornwall.co.uk/clothing/easy-on-adaptive-clothing

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 is part of the US Department of Education: rsa.ed.gov/about/programs. 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 workplace include

• United States Equal Employment Opportunity Commission: eeoc.gov

• Disability and Business Technical Assistance Centers. There are ten regional centers supported as part of the ADA National Network, adata.org, 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 Fair Employment Practices Agencies (FEPAs) responsible for enforcing those laws. Usually the laws enforced by these agencies are similar to those enforced by EEOC: eeoc.gov/fair-employment-practices-agencies-fepas-and-dual-filing.

• 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: yourtickettowork.ssa.gov/index.html.

Exercise plans

- Workout videos (also free) on YouTube and through online search for “wheelchair workouts”

- themiamiproject.org/wp-content/uploads/2015/07/home-strength-training-guide-paraplegia.pdf

- newmobility.com/2020/04/stay-at-home-wheelchair-workouts

Health insurance and Financial support

- Social Security Administration’s Plan to Achieve Self-Support (PASS): ssa.gov/disabilityresearch/wi/pass.htm

- Social Security Disability Income (SSDI): ssa.gov/benefits/disability

- Supplemental Security Income (SSI): ssa.gov/benefits/ssi

Medications

- Patient Advocate Foundation is a national organization that can help you negotiate bills with hospitals, doctors, and insurance companies: patientadvocate.org.

- Partnership for Prescription Assistance is a clearinghouse for more than 475 public and private assistance programs; it includes nearly 200 pharmaceutical options: screening.mhanational.org/content/partnership-prescription-assistance.

- RxAssist: rxassist.org

- NeedyMeds: needymeds.org

The Resilience Project: theresilienceproject.com.au/about

Travel and vacation service providers

- Tour guides that focus on disability clients

disneyworld.disney.go.com/guest-services/guests-with-disabilities

disneycruise.disney.go.com/port-adventures/new-port-adventures-accessible-travel-solutions

executiveclasstravelers.com/1/travel_agents.htm

- Air Ambulances

• Angel Medflight: angelmedflight.com

• Use your local not-for-profit air ambulance service, as their cost will be much lower than the for-profit national chains.

- Renting places to stay

• Airbnb: airbnb.com

• VRBO: vrbo.com/vacation-rentals

- Comparing credit cards for travel benefits

nerdwallet.com

wallethub.com

Resources for SCI

Books

Mayo Clinic Guide to Living with a Spinal Cord Injury: Moving Ahead with Your Life by Mayo Clinic

Spinal Cord Injury: A Guide for Living Second Edition, by Sara Palmer, PhD, Kay Harris Kriegsman, PhD, and Jeffrey B. Palmer, MD

Spinal Cord Medicine: Comprehensive Evidence-Based Clinical Reference for Diagnosis and Treatment of Spinal Cord Injuries and Conditions by Steven Kirshblum, MD, and Vernon W. Lin, PhD

Websites

Paralyzed Veterans of America: pva.org

United Spinal Association: unitedspinal.org

Miami Project to Cure Paralysis: themiamiproject.org

Abilities Not Disabilities!: facebook.com/groups/1524512594326787

SCI Survivors: facebook.com/groups/Strokesupportgroup1

Spinal Cord Journal and International Spinal Cord Society: facebook.com/groups/102413657179114

Spinal Cord Injury USA Group: facebook.com/groups/2014869075503756

Wives and Girlfriends of Spinal Cord Injury: wagsofsci.com

WheelChair Mafia: facebook.com/WheelchairmafiaNL

Resources for Stroke

American Stroke Association and American Heart Association: strokeassociation.org

Stroke Survivors: facebook.com/groups/573759576077398

Life After Stroke: facebook.com/groups/598682020276507

Stroke Recovery Support Group: facebook.com/groups/1989966117920808

Centers for Disease Control and Prevention: cdc.gov/stroke

Resources for TBI

Books

John W. Cassidy, MD. Mindstorms: The Complete Guide for Families Living with Traumatic Brain Injury. New York: Da Capo Lifelong Books, 2009.

Vani Rao, MBBS, MD, and Sandeep Vaishnavi, MD, PhD. The Traumatized Brain: A Family Guide to Understanding Mood, Memory, and Behavior after Brain Injury. Baltimore: Johns Hopkins University Press.

Amy Newmark and Dr. Carolyn Roy-Bornstein. Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries: 101 Stories of Hope, Healing, and Hard Work. Chicken Soup for the Soul Publishing, 2014.

Dr. Dan Engle. The Concussion Repair Manual: A Practical Guide to Recovering from Traumatic Brain Injuries. Lifestyle Entrepreneurs Press, 2017.

Websites

TBI

Brain Injury Association of America: biausa.org/public-affairs/media?search=%22concussion+information+center%22

TraumaticBrainInjury.com: traumaticbraininjury.com

Love Your Brain: facebook.com/loveyourbrainfoundation

Traumatic or Acquired Brain Injury Support Group: facebook.com/groups/6367734334

The Centers for Disease Control and Prevention: HEADS UP on Brain Injury Basics includes how to diagnose a concussion and specific recommendations for return to school and return to sports: cdc.gov/headsup/basics/index.html

Traumatic Brain Injury Support Group: facebook.com/Traumatic-Brain-Injury-Support-Group-180684948672011

TBI Hope & Inspiration: facebook.com/tbihopeandinspiration

Traumatic Brain Injury Healing and Recovering Support Group: facebook.com/groups/186712754690242

Traumatic Brain Injury Awareness and Support: facebook.com/groups/traumaticbraininjuryawareness