Spinal Cord Injury Resources for Patients and Families

A spinal cord injury (SCI) impacts not only the person that suffered the trauma, but their immediate family or caregiver is also affected. Many questions can arise, and having the right resources can be extremely helpful when navigating life after a spinal cord injury. Relying on websites from reputable organizations can be beneficial when understanding what your “new normal” means. These websites offer checklists and other tools. They have done the work for you and provide a wealth of research-backed, credible information.

Spinal Cord Injury Statistics

  • Vehicular crashes are the leading cause of spinal cord injuries in the nation. Taking a fall or tumble, acts of violence or sports-related activities follow.
  • The average age a person suffers from a spinal cord injury-related incident is 43 years of age.
  • Men make up to 78% of new spinal cord injury cases globally.
  • Dependent on the severity of the spinal cord injury and the age it occurred, the average lifetime costs can be up to $5 million!

You can find even more statistics and other news about SCI on the Mike Utley Foundation website. Mike Utley played NFL football and was the offensive guard for the Detroit Lions until 1991, when he became paralyzed playing the game. His mission has evolved to help all people disabled by spinal cord injuries.

Spinal Cord Injury Resources

United Spinal Association

Get the resources you need to thrive and live life to the fullest. Find answers to all your disability-related questions and learn how other SCI patients manage life skills, travel, maintain relationships, parent, and participate in activities.

Christopher & Dana Reeve Foundation

This foundation is dedicated to curing spinal cord injury by funding innovative research and improving the quality of life for people living with paralysis through grants, information, and advocacy.

Dana Reeve quote about SCI being a cruel trauma

National Institute of Neurological Disorders and Stroke: SCI

Learn about research on spinal cord injuries, rehabilitation, and the history of SCI treatment.

man consoling woman in wheelchairSpinal Cord Injury Model System

The University of Alabama at Birmingham Spinal Cord Injury Model System (UAB-SCIMS) provides educational materials related to the health and quality of life for people with spinal cord injuries and their families.

Unite 2 Fight Paralysis

Uniting and empowering the international spinal cord community to cure paralysis through advocacy, education, and research support. Listen to their podcast, signup for their newsletter, run or wheel in a race, etc.

The Craig H. Neilsen Foundation

This foundation is focused on supporting research and innovative rehabilitation programs to improve the quality of life for those with spinal cord injury.

Facingdisability.com

A guide for patients and families includes an extensive list of resources related to assistive technology, pediatric SCI, government programs, financial assistance, and much more.

Model Systems Knowledge Translation Center

Here you will find research-backed, grounded in evidence resources for those living with SCI and their supporters. Find printable PDF documents, videos, and slideshows relating to bladder management, bone loss, adaptive sports, driving, etc.

BACKBONES

Connecting people with spinal cord injuries making it easy to meet others with similar injuries, interests, and backgrounds. Become a part of an entire group of people connected by shared experiences.

The Travis Roy Foundation

This foundation focuses on enhancing the lives of individuals with spinal cord injuries and their families by providing adaptive sports equipment and assistive technology. Some eligible items may include an upgrade and maintenance of wheelchairs, vehicle modifications, ramp and lift installation at your home, and other adaptive equipment.

two men racing each other in wheelchairsRick Hansen Foundation

The Rick Hanson Foundation’s mission is to inspire others to share in achieving big dreams that accelerate improvements in the quality of life of people with spinal cord injuries.

Spinal Cord Injury Zone

Stay up-to-date on spinal cord injury news, get answers from other SCI patients, watch SCI breakthrough videos, and access a variety of additional SCI information on this not-for-profit website.

Morton Cure Paralysis Fund

The Morton Cure Paralysis Fund (MCPF) is committed to finding a cure for paralysis caused by SCI and other central nervous system disorders. MCPF is also a community of people that provides information and emotional support to those affected by paralysis.

SCI-INFO-PAGES

Find spinal cord injury-related associations and organizations by state. Rehabilitation centers by state can also be found on this website.

Paralyzed Veterans of America

This nonprofit organization is dedicated to serving veterans of the U.S. armed services, supporting medical research, and guaranteeing civil rights for all people with disabilities.

young man in wheelchair playing with dog that is sitting on an old tire

These websites are just grazing the surface of all organizations and associations that provide education, research, advice, and more helpful information for spinal cord injury patients and their families.

If you are in a wheelchair because of a spinal cord injury or have limited dexterity in the hands, we offer extended-length catheters and ones designed for minimal hand function. We carry compact and discreet catheters for traveling and easy-to-open hydrophilic straight and coude tip catheters. Be sure to check out all of the catheter options we offer, and if you need help choosing, our Product Experts are just a phone call away.

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Having a Spinal Cord Injury and Regaining Independence

A spinal cord injury is an often disabling medical condition caused by damage to the spinal cord or the nerves near the end of the spinal cord. Depending on the location of the injury on the spine, paralysis can occur in some if not all parts of the body. The higher the injury location on the spine, the more assistance a person most likely will need.

Becoming disabled after a spinal cord injury can truly be devastating. However, many individuals – even with high levels of paralysis, such as quadriplegics, go on to be extremely successful and productive members of society. Many also have relationships, including marriage and children.

Managing Life at Home After a Spinal Cord Injury

The biggest concern for anyone who has a spinal cord injury is how they will manage it. This thought happens most often in the early stages of their recovery. When I had my spinal cord injury, I couldn’t do much for myself either. After having a back fusion surgery where rods were surgically placed all the way down my spine, I had to wear a TSO cast that encased my entire upper torso. It gave time for the rods to fuse with my spine. During this time, I was under many restrictions, such as when I wasn’t wearing it, I had to remain in bed and could not even turn myself. After twelve weeks, I was completely free from wearing this cast, but I still couldn’t lift more than five pounds.

As much as I appreciated all this attention to detail, my biggest concern was that I had infant children. My youngest was a newborn who had never been less than five pounds. So, I had no choice but to hire help. It was the only way I was going to have any chance of working on myself. I hired a nanny to live with me to take care of the baby at night. During the day, they went to daycare.

I was in a rental wheelchair when I went home from rehab. I was also sleeping in a hospital bed until the orthopedic surgeon felt it was safe for me to sleep in my own bed. Before I had left rehab, I had hired a home health aid. She wasn’t trained in personal care, such as bladder and bowel incontinence, but she was willing to learn, so the rehab facility taught her. She helped me shower, take care of my bathroom needs at home, dressed me, and helped me into my wheelchair. Once I was in the wheelchair, I was at least mobile.

Then, I learned to drive. I received assistance from DARS, now known as Texas Workforce. They helped pay for the hand controls installed in my car and the lessons to learn how to drive a modified vehicle.

Going Back to Work After a Spinal Cord Injury

woman in a wheelchair working on a computerLater on, when I chose to go back to college, Texas Workforce helped pay for courses and books that I needed. When I got further education to write for teenagers and children, they continued to help me achieve my ultimate goal to be a full-time writer. I chose to work from home, so with their help, I had my office set up with adaptive equipment, including an ‘uplift desk.’ There was no excuse for me to not be productive, so I went to work.

Going back to work after my spinal cord injury was one of the best decisions I could have made for myself, along with learning to drive. The sense of independence I felt was heaven sent. Within months, my confidence as a writer grew. With continuous physical therapy, I also gained upper body strength to take care of my own needs.

I wasn’t shy about seeking psychological help either. I was grieving the loss of my legs and how my spinal cord injury affected my life after that. Everything changed for me, and I could either sink or swim.

Regaining Independence After My Spinal Cord Injury

After my youngest reached four years old, I let go of the nanny. That had been one of the many goals I had set for myself. So from that point on, I was taking care of my two children alone.

I’ve always said that life is about choices, but my thought process became warped when I had my injury. Eventually, I gained hope, which ultimately gave me the strength to keep moving forward. I went on to marry again and have another child. Through all of this, I have learned I needed no help this time around caring for my third child.

What I Learned on My Journey to Independence

group with disabilities from spinal cord injury sharing a beer and playing gamesWhat I have learned the most throughout my self-discovery journey is that there are some really nice people in the world. One of them I married, and the others are my closest friends. I also found that the more I do, the more respect I gain from those who don’t quite understand my disability from my spinal cord injury. However, what they see is a self-sufficient, strong, confident mother of three who happens to be in a wheelchair.

If you or someone you care for has a disability due to a spinal cord injury or any other medical condition, some of the mobility and adaptive equipment and incontinence products we carry may help in everyday life. For more resources, help to find support, and to read other’s stories, the United Spinal Association is a great place to start.

If you have any questions or need more information on the home delivery medical supplies we offer, our Product Experts are just a phone call away and ready to assist.

About the Author

Meena Dhanjal Outlaw

On January 23, 2000, Meena suffered a spinal cord injury that left her a T12 paraplegic. She worked hard to grow and push past adversity and challenges and even went back to school for a four-year diploma in writing for teenagers and children.

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