Poliomyelitis doesn’t make the health reform cut

Early in paralytic poliomyelitis, the patient exhibits weakness; hyperesthesia; muscular pain, frequently quite severe; antalgic (reflexive) immobilization (spasm) of involved muscles; and normal or accentuated tendon reflexes.

This phase is rapidly followed by loss of motor function, which is usually asymmetric and noncontiguous: one or both legs in 60 percent of the cases; one or both arms in 25 percent. Involvement of the diaphragm and intercostal muscles reduces ventilatory capacity. Cranial nerve motor loss most frequently involves the 7th cranial nerve. Lower cranial nerve involvement can cause respiratory obstruction, regurgitation and aspiration.

Medullary center damage is usually lethal. Every patient with paralytic poliomyelitis must be followed closely for progression of neurologic damage because this can occur with unexpected rapidity.

Infants do not describe pain. They manifest symptoms and signs non-verbally.

It’s 1952. The six month old was noted to be irritable, febrile and not himself. The diagnosis of poliomyelitis required three weeks to establish.

The infant’s survival required several operations to relieve spastic paralysis and footdrop. Luckily, he did not require long term ventilatory assistance, such as it was in 1952. During the uncertainties of the acute phase, he was placed into an iron lung. He survived.

As a growing child, he noted peer group mobility issues, but did not personally program them as handicaps or impairments. No such politically correct language concepts existed or even appeared needed at the time. His integration into a classroom and the sequence of his existence required personal acceptance of his health status as matter-of-fact reality.

How does Garrison Keillor describe the resident’s of Lake Wobegone? “…where all the women are strong, all the men are good looking, and all the children are above average…” Being above average is not all that difficult. To put it bluntly, as George Sheehan, MD, advanced, “the average person has simply settled for less, has accepted mediocrity. But the goal of life is not to be an average human being but to be the best human being one can be.”

Jack London was more assertive: “I would rather be ashes than dust! The proper function of man is to live, not to exist. I shall use my time.”

By age twelve, our polio survivor became a weight lifter. He succeeded in gaining substantial upper body strength. This enabled unassisted ambulation and participation in ADL’s (“activities of daily living”). His upper body abilities included feats of rope climbing that quickly brought him to the attention of coaches and Phys Ed teachers and enabled him, with the encouragement of teachers and coaches, to join the gymnastics team as a sophomore in high school. Not vaulting, not tumbling, but competing in the disciplines of still rings (Iron Cross), parallel bars and pommel horse.

He jokes that he was always penalized for his dismounts…” my weak point”… but this remarkable young man went on to become by 1970 the second place finisher in the Garden State Gymnastics Competition. But who remembers number two? His current post-polio syndrome is characterized by the exacerbation of existing or new health problems, as muscle weakness and fatigability, general fatigue, and pain. This is a lower motor neuron disorder associated with an ongoing process of denervation and re-innervation that are out of synchrony. Physiotherapy seems to help, as does avoidance of inactivity.

Yet another call for increased self-motivation and incredible self-discipline, especially for a 58 year old who would just as soon chill. But post-polio health interventions do not make the cut list for twenty-first century American Health Care Reform. At best, it is difficult to pre-certify a condition whenever “evidence-based medical data” is missing or incomplete.

So how do the survivors of the 20th Century’s Iron Lung Age do in this post-modern twenty-first century? Sort of OK, but mostly, on their own and without much support, no pun intended. How economical is that?

When asked how sports and athletics have impacted our patient’s life, his ready reply is “workouts are the best possible use for my small slice of eternity … this is about my responsibility to myself.” And he contributes mightily to his community… but that aspect of this story is for another time.

Have we crossed some mythical boundary, some apocalyptic moment and epiphany that demands that our health and care must now belong to mother government, with an implied reduction to negligible or non-existent the role of self-care and personal responsibility?

If we physicians are to be limited in our therapeutic choices because of sparse assets or available resources, should we not then be more committed to promoting behavior that leads to a healthier populace? No matter what the underlying condition or diagnosis? And can we not become better examples for our patients?

Or is prevention only to be trusted in the hands of legislators, and via a language that decries bad habits through punitive taxation and regulation rather than reasonable personal choices?

Do we actually need to rely upon legislative mandates to alter food choices, habit management, or personal responsibility, and, by extension, our personal liberty?

“Effort is the measure of a man,” wrote William James. And in 1986, Sheehan concluded that “making the effort moves you up in character. It is certain to keep you above average.”

And ahead of whatever health care reform might lay in our immediate future.

Jeffrey Hall Dobken is an assistant clinical professor of pediatric immunology and allergy, and certified bioethicist at Weill Cornell School of Medicine in New York City.

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