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.

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.

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’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.

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

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…