On average, according to University of Alabama data, a person with a spinal cord injury can expect to spend from $400,000 to as much as $2.1 million over a lifetime — depending on how serious the injury is and how old they were when they suffered it.
What it costs spinal cord patients to care for themselves also has a ripple effect.
The Dana Alliance for Brain Initiatives estimates that spinal cord and brain disorders cost the American economy more than $400 billion a year in direct and indirect healthcare costs. And the University of Alabama’s National Spinal Cord Injury Statistical Center predicts that if the nation developed comprehensive therapies for those already injured as well as for reducing further injuries, the country would save about $400 billion on future direct and indirect lifetime healthcare costs.
When it comes to caring for spinal cord injuries, caregivers have to pay attention even to what may seem like the most mundane biophysical responses. A flushed complexion. Blotches on the skin. Sweat. All of these may be signs that someone is experiencing an autonomic dysreflexia, a sudden potentially life-threatening spike in blood pressure that can end in stroke.
“The higher you go [with an injury] in the spine closer to the head, the more neurological function you lose,” said Dr. Kenneth Lipow, a neurosurgeon in Bridgeport, Conn. Severe spinal cord injury can not only impair motor skills, like the ability to walk, but also basic reflexes, such as the one controlling the expansion and contraction of blood vessels. “It’s as though your brain and your body function separately in a way,” Lipow said.
When someone sits in the same position too long, the brain sends a message to the limbs: Rearrange yourselves — I’m not comfortable. In the case of a spinal injury, there is no outgoing message. The upshot is that blood flows out of the affected area. If that condition continues too long, a pressure sore develops. To prevent this, patients who are partially or fully paralyzed need to have their joints repositioned somewhat at regular intervals and require major shifts in their position every two hours. In addition, the limbs need to be regularly exercised and stretched to maintain some muscle tone.
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For Steven Marzec of St. Charles, Ill., swimming and weight training have enabled him to increase his upper body muscle tone even though he was paralyzed from the waist down. An 18-wheeler carrying a prefabricated house collided with the car Marzec was driving 16 years ago during a Wisconsin camping trip. The prefabricated building slid off the tractor-trailer bed, crushing the roof of Marzec’s car.
“My husband is a very independent person,” says Marzec’s wife, Patricia. “I am always around to help him reach something that’s way up high or sometimes to help him get back into his wheelchair if he’s fallen,” she said. “What’s taken me a long time to learn is patience, to wait for him to do things himself. I’ve got that down now. It’s the only way, I think, that you can maintain your self-esteem, if you know that the things you can do for yourself, you’re doing and not leaving up to someone else.”
As for Frazier, his accident opened a door that he never perceived for himself: higher education. He earned a bachelor’s degree in political science at Keensaw State University, and is enrolled in a master’s degree program on conflict resolution.
Maneuvering in a high-tech wheelchair that he operates by sucking in and puffing out air, Frazier navigates his way through shopping malls, restaurants, college campuses and anywhere else he wants to go. To take notes in class, he has modified a stenographer’s recording tool, making it operate by using his chin.
“I get interesting looks every day, but I’ve kind of gotten oblivious to it,” Frazier said. “People used to stare at me every day [before my fall] because I had a bodybuilder’s build.”
The instructors aren’t looking so much at how great someone does, Frazier says, but “what are you gonna do if you can’t find an elevator? Who do you ask? And what are you going to do if a place isn’t that accessible?
“What it comes down to is how well you can problem solve for yourself and communicate your needs,” Frazier said. “And that has nothing to do with physical ability.”