The real story on this quadriplegic who regained his ability to walk is the program he created to do that

by CynthiaYockey on December 12, 2009

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I found this clip via Instapundit, who linked the blog of an old friend of the man being profiled, Mark Stephan.

Stephan is a successful businessman who also ran marathons and participated in triathlons. He became quadriplegic due to injuries from a bicycling accident on Aug. 11, 2007. NBC is playing the “inspiration” angle.

Actually, what Stephan’s success in overcoming quadriplegia reveals is the scandalous way paralyzed people are abandoned in our healthcare system and what we can do to ensure better outcomes and even regained abilities by using his successful rehabilitation program as a model.

(Background for any new gentle readers: my late life partner of over 20 years had multiple sclerosis and we met when she could still limp two blocks. She was quadriplegic due to the MS the last 10 years of her life and paralyzed from the chest down for two more years before that. So I participated in the full range of rehab care for people with mobility impairments and I know what it is like to live with quadriplegia since I was the one providing her care and lifting and transferring her. We were lucky enough for her to receive care at the National Rehabilitation Hospital in Washington, D.C., and the therapists there trained me, so I do know what passes for top care in the U.S.)

The biggest scandal and most heinous atrocity about paralyzing injuries or illnesses in the United States is that the patients are so neglected during their acute care hospitalizations that their muscles and tendons contract and harden irreversibly. It only takes a few days of failure to provide proper range-of-motion exercises for their hands to look like they were wax and got too close to a flame and their fingers are melting and for their feet to be pulled into a permanent point. This means that when they are transferred to a rehabilitation hospital, the neglect during acute care is actually responsible for a significant percentage of their disability AND IT DID NOT HAVE TO HAPPEN!!!!!

I did range-of-motion exercises for Margaret at least once a day, and usually more, for about 16 years. It did help that after she became paralyzed, she was prescribed Baclofen, which reduces contractures. I worked so hard on this because it made Margaret more comfortable, it kept her ankles and calves flexible — so her feet would rest flat on the floor instead of rigidly pointing down — so I could transfer her (from bed to wheelchair, wheelchair to car, car to wheelchair) by pulling her into a standing position and pivoting. Range-0f-motion exercises also ensured her knees and hip joints stayed flexible enough so she could continue to receive gynecological exams.

So, what Mark Stephan has done is not inspirational, IT IS FREAKING MEDICAL HISTORY because he has shown what works to rehabilitate some paralyzing injuries. AND HE HAS SHOWN WHAT CAN BE ACCOMPLISHED WHEN REHAB STARTS IMMEDIATELY and acute care neglect is not allowed to create new, irreversible injuries due to contractures.

Update, 12/11/09, Sat.: Welcome, Instapundit readers, and thank you, Prof. Reynolds, for the link. I just want to emphasize there are two important points to this story. First, we could save a LOT more abilities for people with paralyzing injuries or illnesses with the knowledge that physiatrists, physical therapists and occupational therapists have RIGHT NOW but the current system has too great a division between acute care and rehab care, including the fact that they are applied sequentially instead of simultaneously because often they are at different physical locations.

That is, the paralyzed person gets treated for their injury/illness in the acute care hospital, but little or nothing is done to preserve range-of-motion and the flexibility of muscles and tendons. Contractures can become irreversible in just a few days, or require surgery that could have been avoided with proper and immediate range-of-motion therapy (and sometimes splinting). So when the patient is transferred to the rehab hospital with permanent contractures from neglect in the acute care hospital, there may be little or nothing the physical therapist and occupational therapists can do to help them  recover the abilities that were lost DURING THEIR ACUTE CARE.

Second, the program that Mark Stephan put together to recover his independence and walking was successful and should be used as a model and studied to find out why it worked.

Determined people ARE able to make breakthroughs like this. It was not doctors who created the field of physical therapy and physiatry (rehab medicine) — it was a nurse in the outback of Australia using her own common sense to fight epidemics of polio and restore the ability of polio survivors to walk again. Her name was Sister Elizabeth Kinney (the British call nurses “Sister” — there is a wonderful biopic called “Sister Kenny,” with Rosalind Russell playing the title role). And what was it do you suppose that resulted in permanent loss of the ability to walk, which she learned how to prevent or even reverse so that many of HER patients regained the ability to walk?

Contractures.

P.S.

In cases of brain injury or atrophy, talk to the doctors about heterotopic ossification. Range-of-motion exercises do not prevent this condition.

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  • Malvolio

    First, wow. It takes an unusual person to enter a relationship with someone for whom a life of perpetual care is inevitable and then stick with her. So kudos.

    Second, was Mark Stephan unusual, or was it just the nature of his injury? Was the damage to his spine somehow inherently recoverable in a way that most are not? Or is paralysis widely overdiagnosed as permanent?

    Third, is there a range-of-motion machine? It seems to me that the more ROM exercise a quadriplegic gets, the better for his health and for his chance of recovery, but it would put a tremendous burden on the caregiver. An pneumatically-driven structures that would wiggle a person around for a few hours a day would cost less than a car. Assuming health care isn’t nationalized this month, it might make for an interesting business opportunity…

    • Malvolio,

      Thank you for your kind praise. I’m going to tell you what I always told people who praised me for caring for Margaret when she was alive: Margaret took as much care of me as I did of her, maybe more. She nourished my heart and soul and I was happy to do everything required for her care because she gave me so much joy.

      Regarding whether Mark Stephan was unusual, yes: he has well-established skills of conceiving and achieving extraordinary goals, so he did not resign himself to his diagnosis. I gather he is a wealthy man, so he has the financial resources to assemble a team of experts and purchase the equipment they recommend — or design. He has the discipline to follow the program they design. He is benefitting from the progress and change of attitude toward quadriplegics created by the late Christopher Reeve (who was paralyzed at C-1), but his injury appears to be lower in the neck than Reeve’s, which is less severe, so unlike Reeve, he has the advantage that he can breathe on his own. (Reeve required a ventilator.) Also, he had nothing to lose by defying the odds.

      I think more people will be able to recover from spinal cord damage from injury or illness if the program Stephan used becomes more widely available. I do not know if paralysis is widely over-diagnosed as permanent, but I do know that the system currently ensures permanent loss of the ability to use one’s legs, arms and hands — especially the legs — due to contractures that absolutely are a result of the failure to provide rehab care and acute care simultaneously.

      The reason that Christopher Reeve’s feet and hands rested normally in his wheelchair is that he received proper range-of-motion care from the first day he was injured. If contractures had been allowed to set in in his legs, his feet would have gone into a permanent point (envision a ballerina on tip-toe) and he would not have been able to use equipment similar to the equipment Stephan is shown using to stimulate his body to walk. In other words, it’s the contractures that are ensuring permanent disability far more than the paralyzing injury or illness. And we know how to prevent the contractures right now. We’re just not doing it and that’s solely due to how the system is set up.

      Regarding range-of-motion machines — Stephan is shown using equipment that stimulates the body to walk, but that’s not the same as range-of-motion (ROM) exercises. I know very well ROM is labor intensive, but a person is better than a machine at sensing how far a tight muscle will stretch and how much pain the patient can handle because ROM exercises DO smart. That’s the reason Reagan’s former press secretary, James Brady, called his PTs “physical terrorists.” Funnily enough, Mr. Brady was treated at the National Rehabilitation Hospital in D.C., too, but before we started going there, although Margaret did have an appointment there in 1996 when Sen. Bob Dole was touring the facility while he was running for president as the Republican nominee against Democratic incumbent Bill Clinton. I thanked him for the work he did to get the Americans with Disabilities Act passed, and later in his tour he was gracious enough to pose with Margaret and me when a photographer was taking photos of Sen. Dole with other patients. He came over to us especially and was very kind. I didn’t obtain a copy because I was a Democrat and couldn’t see myself ever wanting to have a photo of us with one of those demon Republicans. *Sigh.*

      Cynthia

  • I don’t know anything about spinal cord injuries but what I read, I do know that the reason I recovered from my stroke as well as I did was because the docs and, mainly the nurses, got me out of bed right away and forced me to walk, as well as other exercises .

    I’m not sure I would have recovered nearly as fast, or as well, without the aid of those nurses, nor might I have done as well without my Linda Lou making them send me to the best hospital in the Dallas area after the stroke was confirmed in that little country hospital.

    I owe a lot to those nurses as well as to my Linda Lou who, when my communication skills were limited to grunting and drooling, outstubborned everyone about the choice of hospitals. Not to mention, of course, her being even more forceful about getting me out of that bed and forcing me into those walks around the corridor and those dumb and then-painful range of motion things that got my arm and hand back.

    I guess that paid me back for that almost whole year of her and that knee problem she had. I sure am lucky.

    • Peter,

      I think you are right about Linda Lou’s contribution. I hope you tell each other every day how lucky you feel to be together.

      Cynthia

  • I don’t know anything about spinal cord injuries but what I read, I do know that the reason I recovered from my stroke as well as I did was because the docs and, mainly the nurses, got me out of bed right away and forced me to walk, as well as other exercises .

    I’m not sure I would have recovered nearly as fast, or as well, without the aid of those nurses, nor might I have done as well without my Linda Lou making them send me to the best hospital in the Dallas area after the stroke was confirmed in that little country hospital.

    I owe a lot to those nurses as well as to my Linda Lou who, when my communication skills were limited to grunting and drooling, outstubborned everyone about the choice of hospitals. Not to mention, of course, her being even more forceful about getting me out of that bed and forcing me into those walks around the corridor and those dumb and then-painful range of motion things that got my arm and hand back.

    I guess that paid me back for that almost whole year of her and that knee problem she had. I sure am lucky. And I agree with you about getting far more than I ever gave when I took care of her. I only hope that she got that same gain when she took care of me. It grew my soul.

  • Sorry, please don’t ask how I managed to do that douple, you can make it go away if you like. Along with this little comment that isn’t persactly for the public. As you know I am not exactly agreeing, nor disagreeing about open gays in the Services nor gay marriage, I am simply not sure of the long term effects of each. Here is what I am sure of, Cyn, as a believer I know that God does not hate nor punish love.

    And yes, I tell her often that I am the luckiest man in the world. I never leave her, even for a short drive to the store, without telling her I love her and a goodbye kiss, even when we are fussing and fighting about something. If I ever get run over by a rampaging Rhinoceros or something her last memory of me will not be an angry word.

    And you, Cynthia, just because I do not agree, or rather that I am not sure if I agree fully, does not mean that I am not your friend.

  • Stan

    I am a Physical Therapist and this was a very interesting blog. I personally believe that the problem with our healthcare system today is not the providers or the patients who pay for insurance and into the medicare/medicaid system. The problem is the PROFIT DRIVEN, RED TAPE DRIVEN INSURANCE COMPANIES. Cut the middle man out and costs would go down and the care would be provided at a reasonable rate, and would not be abused by healthcare providers trying to jump through hoops to get reimbursed by embellishing the charges to pay for their overhead. It has become a shake and bake business, like fast food.

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