Uncounted living with paralysis & spinal cord injuries

Discussion in 'General Health & Wellness' started by TwoCatDoctors, Apr 21, 2009.

  1. TwoCatDoctors

    TwoCatDoctors New Member

    [I READ THIS AND WAS ASTONISHED THAT THE COUNT IS ONE OF OF EVERY 50 OF US--THAT'S WAY TOO CLOSE OF A COUNT--this study comes from the Christopher & Dana Reeve Foundation and the main website is at the bottom of this article]
    National News from The Associated Press

    Study finds far more people living with spinal-cord injury, other paralysis than estimated

    04-21-2009 9:21 AM

    By LAURAN NEERGAARD, AP Medical Writer

    WASHINGTON (Associated Press) -- Roughly one in 50 Americans has some degree of paralysis, and five times more people than doctors thought are living with a spinal-cord injury _ nearly 1.3 million _ says a startling study released Tuesday.

    It's a largely hidden population that neither the government nor medical organizations had ever attempted to fully count, and the findings promise to help health authorities understand the scope of need.

    "Paralysis is not rare," said Dr. Edwin Trevathan, disabilities chief at the U.S. Centers for Disease Control and Prevention, which helped design the study. "These data demand that we recommit ... to help this population."

    "Those are startling, startling numbers," said Rep. Jim Langevin, D-R.I., who has a spinal-cord injury himself and urged more investment in not just medical research but transportation, job opportunities and other day-to-day needs of the paralyzed.

    The report found that overall, almost 5.6 million people have some degree of paralysis due to a variety of neurologic problems. Stroke and spinal-cord injury are the leading causes, but they also include multiple sclerosis, brain injuries, birth defects, surgical complications and a list of other ailments.

    That's about 30 percent higher than previous estimates. But for spinal-cord injury alone, previous estimates were woeful _ suggesting just a quarter million people were living with the trauma, a count that mostly included people like the late actor Christopher Reeve, who wound up at specialty treatment centers.

    How could so many people have been missed? Partly, people are living much longer with paralysis, said CDC's Trevathan.

    "There's no road map for somebody like me," said Alan T. Brown of Hollywood, Fla., who broke his neck 21 years ago, just before his 21st birthday.

    From a youth spent in wheelchair marathons, he's entering middle age suddenly needing more care, like an electric wheelchair instead of a manual. He's getting more infections, 17 urinary-tract infections last year alone. That's on top of the extra hurdles to arrange routine care, like a colonoscopy.

    "This is finally going to open up people's lives to see what we live with," he said Tuesday.

    For the new study, funded by the Christopher & Dana Reeve Foundation, University of New Mexico researchers designed a survey of 33,000 U.S. households to measure the full gamut of paralysis _ how many people either cannot move or have difficulty moving an extremity.

    The study paints a sobering picture of the cycle of paralysis and poverty. Sixty percent of people with paralysis have annual household incomes of less than $25,000. Worse, about a quarter report household incomes below $10,000, compared with 7 percent of the U.S. population, the study found.

    Patients often lose their jobs, and caregiving needs can cost a spouse a job, too, ending employer-provided insurance. Treatment, including the physical therapy that can improve independence and sometimes movement, is costly. There are income limits to qualify for Medicaid, and cash-strapped states are limiting coverage.

    The Reeve foundation plans to use the findings to push for health policy changes, including ending a federal requirement that disabled workers wait 24 months before getting health care through Medicare. Also on its target list: insurance policies that forbid $400 air cushions for wheelchairs until someone's already suffered a pressure-caused skin ulcer that can require a $75,000 hospital stay.

    Florida's Brown knows he's lucky, able to pursue a lucrative public relations career and be a mentor to other spinal-cord patients despite being mostly paralyzed from the chest down. Before his injury, he had a private insurance policy that lasted until recently. Now, he said, he's paying tens of thousands of dollars yearly out-of-pocket, and worries about how his wife and two young sons will cope if he ever has to quit working.

    "I thought I was bigger than the chair. I finally realized the chair is bigger than me," Brown said.


    On the Net:

    Christopher & Dana Reeve Foundation: http://www.christopherreeve.org/
  2. daylight

    daylight New Member

    Thank you for posting this Twocats.
    I have paraplegia from a spinal problem.
    here is another link on paraplegia. http://en.wikipedia.org/wiki/Paraplegia

    Mine was caused by a car accident ,RA,scolosis,nerve compression (from the stenosis)
    but I can walk a little ,mostly around the house.

  3. TwoCatDoctors

    TwoCatDoctors New Member

    When I read this study that a portion of those with some degree of paralysis or with spinal cord injury where not counted in the "official count", I thought it was important to post here. A disabled man who is now deceased lived his live in a iron lung and he said that all of us end up either disabled or dead. So I hope the study rings a bell.

    I am in an electric scooter from a fall that caused a compression fracture plus damage to prior back surgery. Like you I can walk a little around the home, but that's it--otherwise I fall.
  4. daylight

    daylight New Member

    I'm the same . In the house i'm a wall hugger or use a cane . Outside the dizziness,pain,stiffness, breathing is very bad . But I can't get an electric chair yet because of ins problems . I can push a wheel chair a few feet but that about it . My husband or daughter help me in stores or on outing. I can't have back surgery because for me it's to dangerous.
    It's amazing how people that are totally paralyzed get through life. I still have feeling in my arms and legs but they say that could change down the road if my spine gets any thinner or compressed. But I don't really believe that I'll get that bad .