Mother's March of Dimes Poster Picture. I am handing Phil Ryan, the Postmaster of Holyoke, MA a check from the campaign. Taken in 1950. I was only out of the hospital 1 year.
My earliest memory of my childhood is throwing up in my grandfather’s car. My grandfather (and my name sake, Robert Knox) had recently had a heart attack and was told to rest. So he spent a lot of time with me, having virtually raised me for the first several years of my life because my father was off fighting in WWII. I remember that I was very upset, as my grandfather used to take great pride in cleaning and polishing his car, and I had summarily yapped all over the backseat. This was the first sign that I had contracted polio. To be more specific, I had come down with Paralytic Poliomyelitis – also called “Infantile Paralysis. It was the summer of 1949, and I was four years old.
Right off the bat, it should be said that doctors in those days knew next to nothing about the disease. They had only vague ideas about what caused polio or how it was spread. They had even fewer ideas on how to treat it. They did note that the majority of cases struck very young children, but they had no idea why. The disease was first described by Michael Underwood in 1789, though “indications” of the disease date back to Egyptian hieroglyphics. It was confirmed as a virus in 1909 by Karl Landsteiner and Erwin Popper; they also confirmed two significant facts about polio: it was definitely contagious, somehow traveling between one host to another -- and – an initial infection conferred immunity to further infections.
Polio came in waves or epidemics. It first appeared as a disease to be reckoned with in Europe in the early 1800’s. Stockholm, Sweden suffered major outbreaks in 1887, 1905, and 1911. The first recorded outbreak in the USA occurred in Vermont in 1894. Slowly the disease picked up steam; the epidemic of 1916 left 6,000 dead and 27,000 disabled in New York State alone. There were outbreaks throughout the USA after that, occurring every few years. The lowest number of cases during the war years was 4, 167 (1940). My year, 1949, was a bad year with 42, 003 cases nation-wide. But the worst year was 1952 when a whopping 58,000 cases of paralytic polio occurred in the USA. Worldwide, the numbers went into the millions.
While doctors knew that the disease was caused by a virus, they knew little else. Most importantly, they did not know how the virus was transmitted from person to person. All kinds of theories abounded. A goodly percentage of kids growing up in the 1940s – 1950s never learned to swim because it was feared that the virus could hop from one kid to another through the water in swimming pools. Initially, there was a real stigma of having contracted the disease. Years ago, I met a women who became sick with polio around the time that I came down with the disease. She and her family had been living in the flats in south Holyoke. But when her father realized that she had polio, the entire family left their home in the middle of the night and secretly took residence in a house in South Hadley Falls. Her presence there was kept a secret for years, as the family feared that neighbors would “run them out of town” if they found out that a polio victim was living in their house. In my case, I was isolated from the rest of society for almost my entire 4th year in the Polio Ward at the Holyoke Hospital. To my knowledge, all the patients there were kids. The Polio Ward was a restricted area in the hospital. Only parents and health care givers were allowed in, and then only for short visits. It was considered highly dangerous for people to enter this ward. My parents were always grateful for the nurses and doctors who cared for the polio victims; it was understood that they were taking their life in their own hands just by walking into that room.
During that year in the hospital, I became progressively weaker. Eventually, almost my entire body was paralyzed. At one point, I was having difficulty swallowing and had to be fed through a tube. It was feared that my chest muscles would fail, making it impossible for me to breathe, so an “iron lung” was put next to my bed in case I started to suffocate. Thankfully, I never needed it. And boy, I mean “thankfully”! When you went into an iron lung, only your head and feet protruded from this huge, diving bell like apparatus. Few people who went into an iron lung ever came out. It was a life sentence of lying on your back while a machine breathed for you. But my chest muscles kept on working when just about every other muscle group simply stopped functioning. This was no small mercy. I have always been grateful for my chest muscles. Nice going, guys!!
The word poliomyelitis is derived from the Greek “polio” which means “grey” and “myelon” which means “marrow”. In other words, poliomyelitis is a disease of the Grey Marrow, which was taken to mean the spinal column. It is now understood that the polio virus was extremely common. Just about everyone was exposed to this virus as a child. Most kids weren’t even aware when the virus entered their bodies; their immune system simply “flushed” it out through their intestines. AND, this momentary ‘brush” with the killer gave them permanent immunity from the virus for the rest of their lives. In a very few cases, the virus managed to enter the victim’s blood stream, causing general flu like symptoms of fever and so on for a week or two. And in probably less than 1% of those cases where the virus entered the blood, it also managed to get into the central nervous system, where it traveled down the spinal column destroying motor neurons as it moved along. It is still not known why some few kids came down with full blown paralytic polio while the vast majority of kids didn’t even break a sweat. By the time most people entered their teenage and adult years, they had long since had their little run in with the polio virus and thereby obtained their lifetime “Get Out of Jail Free Card”.
Of course, there were always exceptions. Probably the best known was Franklin D. Roosevelt who contracted paralytic polio after he was married. The polio virus was particularly dangerous to adults who had not been exposed to the virus as a child. Ironically, modern sanitation has the potential of making us even more vulnerable to polio. It was frequently known as the Disease of Development. Why you might well ask? In areas of poor sanitation, virtually all kids are exposed to the virus, and most kids can defeat the virus with their own immune system. However, for kids living in the developed nations that have excellent public sanitation, natural exposure to the virus is less frequent, leading to the potential for more cases of adult on-set polio, like FDR.
It is now known that the polio virus traveled from host to host via what is called the “anal-fecal-oral route”........ Geese, Louise!!!!! Talk about piling on insult after injury!! “You know, Bobby, you were a strange little baby. Just as soon as you could crawl about on your hands and knees, you took an intense, even obsessive interest in the bottoms of other babies. This behavior embarrassed your mother and positively alarmed your father. But the doctors said it was just a phase, and that you’d grow out of it…….” No, it didn’t mean that at all. No doubt the majority of infections came simply because someone infected with the virus went to the bathroom and then did not wash and sanitize their hands before they handled food that others were going to consume. Still another pretty yucky thought, if you ask me.
There were three distinct types of paralytic polio. Some 70% of the cases were Type 1 or “Spinal Polio”. Type 1 polio almost always involved permanent paralysis, which was usually asymmetrical (meaning, for example, that one arm would be paralyzed and the other arm left unharmed.) Spinal Polio most frequently affected the patient’s legs. Type 2, Bulbar Polio occurred in some 2% of the cases and was considered to be the most dangerous and life threatening because it attacked the trunk – what today we would call a person’s core. Type 3 polio was a combination of the first two, called Bulbospinal Polio. Naturally, that’s what I had. This generally meant some sort of asymmetrical paralysis and the real possibility of dying because of “core shutdown”. Yup, Type 3 Bulbospinal Polio was the pick of the litter, no doubt about it.
In fact, I was on the Holyoke Hospital’s “Danger List” for just over nine months. When I came out of the Polio Ward, I was almost completely paralyzed, but with daily intense physical therapy that took place during my entire 5th year, I regained the use of most muscles that had been lost. By the time I entered school in my 6th year, I was only left with extensive paralysis in my upper right arm and shoulder, some general weakness in my right lower arm and hand as well as some fairly minor loss of my trunk muscles, which has led, over the years, to degenerative disc disease and substantial curvature of the spine. The good news was: my left arm and both my legs, indeed everything else in my body was just fine.
I have only vague memories of the Polio Ward at the Holyoke Hospital. Of course, I was just a little guy. I do remember the “hot packs”. There was a theory at the time that the virus was sensitive to heat, so the nurses would strap these electric, wool blankets all over my body, wet them with water and crank up the heat to “drive that awful bug away.” Hot packs had a peculiar smell, like burning hair. The heat was terrible, the wool was scratchy … ah, yes, I remember the hot packs all right. I remember that I could look out the window and see cars going up and down Hospital Drive; and occasionally, I could pick out my parents’ car as they drove away. It was scary for a little boy to see his parents driving away into the night, but the nurses were grand and made me feel like I wasn’t completely lost.
Oddly enough, my most vivid memory of the Polio Ward had to do with the floor. The Hospital had “linoleum” flooring, which was quite new for its day. Anyway, it was new to me. I had only seen wood floors with rugs. I was fascinated by the swirling colors that almost seemed to be three dimensional, and I spent hours lying in my hospital bed wondering what it would be like to walk on that floor. The nurses picked up on this desire and used it as a carrot; “Do all your exercises, and someday you will get strong enough to walk on this floor”. It became my most important goal in life. And I distinctly remember my excitement when my parents told me that I could go home the very next day. All I could think of was, “I’m going to walk on the floor”. But the next day, they wrapped me up in sheets and carried me out of the hospital (screaming all the way, mind you). One day, when I was in my 30’s, I suddenly remembered this “unfulfilled” wish. I spoke with Harold Pine, the Hospital president at the time. Harold did a little research and found out exactly what room I was in. This was in the “old” section of the Hospital, and the floors had never been changed. So Harold and I had a grand old time walking about on that silly floor together. I know Harold thought it was all very amusing. I am sure he had no inkling of what it meant to me.
My father was quite slender most of his life, and I was a slender baby. However, polio had made me dangerously thin. As my parents took me home, the doctors pulled my mother aside and stressed the importance of my gaining some weight. So my mother set out to “fatten me up”. I think it’s safe to say that she succeeded beyond their wildest dreams. But beyond getting lots of ice cream and such, that first year out of the hospital was difficult for everybody. For me, it meant arm and leg braces and endless exercises in physical therapy. On top of all this, my parents were constantly telling me how “lucky” I was. Of course, they were happy I was still alive, but a young boy frequently overlooks that basic blessing. That year began a major struggle between my mother, on the one side, and everyone else (my father, my grandmother, the doctors, etc) on the other side of the issue of how much help I should get from adults in getting through the basics of life. My mother hated to see me suffer, and she hated to see me frustrated, so her approach was to keep me in bed, or at least tight by her side and to virtually do everything for me. The doctors and my father kept warning her that if she insisted on doing even the simplest things, like getting me dressed, she would ultimately have a real, life time invalid on her hands. So she had to stand there and watch me battle zippers and buttons and such with one arm. But gradually, I learned how to do these things by myself.
The battle continued over the question of my being allowed to go “outside” the house on my own. I had no memory of ever being “outside” alone. “He’s not ready”, my mother would sob. “Sure he is” would be my father’s reply. At that point, both parents were looking at the calendar, wondering if I would be ready to start school when I turned 6 years old, like everyone else. So one day, I (with my mother fidgeting nearby) bundled myself up in a snowsuit which took about an hour. The front door was opened for me because the stupid snowsuit was so stiff, I could hardly move at all. I stepped forward, and my mother tearfully shut the door behind me. “Go make some friends”, was my father’s advice. I didn’t find any new friends, but within the hour, I had somehow managed to fall off a high wall, landing on the pavement below on my head, which promptly fractured my skull. This, of course, confirmed my mother’s worse fears. But the struggle continued, and, as it turned out, I did enter kindergarten that next fall. And I did make friends, just like my father suggested.
As a school child, I certainly had issues with “anger management”. Sports were hard for me, and I was always self-conscious about my arm, which hung uselessly at my side. I was the “ground” lookout when the neighborhood kids built a tree fort, because, with one arm, I was never confident climbing trees. Many sports I was terrible at, but I would never concede that fact. For example, I was “unbalanced”, really, so I could only turn in one direction when ice skating. Believe me, if you can only turn in one direction (to the right, it turned out), you don’t make a really great hockey player. Nevertheless, I played hockey all throughout my adolescent years. Special rules were made for me when we played sandlot football. I caught and threw both with my left hand playing baseball, which required me to catch the ball, take off my baseball glove and throw, not the greatest system ever when some kid is running like hell for 3rd base. Tossing the tennis ball for the serve was always tricky for me. With golf, my handicap never got in my way, and I was able to play pretty competitively for years. Likewise, my handicap had no affect on my playing soccer. But I was terrible at basketball, and slowly had to concede that basketball wasn’t going to be my sport. And all though this, my parents kept telling me how lucky I was. Sometimes, I will confess, it was difficult for me to see good fortune in all this.
Through all these trials and tribulations, I was always willing to torture my poor mother with constant whining and complaining. I am sure my mother suffered from “Mother’s Guilt” about my polio. As my mother, it was her job to keep me safe, and if something terrible got through her shields and hurt me, it was somehow her fault. Whining and complaining would almost always land me some kind of treat. And, of course, these “treats” generally helped me in my lifelong battle against being thin.
Yup, whining and complaining and asking why I was paralyzed and other kids were not worked just about every time….until one day, that is. One fateful day, I griped just a tad too much about being handicapped. My mother exploded, and the next day, I was kept out of school and taken to a Long Term Care Facility for polio patients. Most of the patients were kids my age. One or two of them had been in the Polio Ward of the Holyoke Hospital when I was there. All had handicaps so profound as to make any kind of life outside an institution impossible. Many of the kids had no use of any of their arms or legs. Virtually everything had to be done for them. They couldn’t even hold their heads up straight. Many had lost control of their facial muscles and drooled on themselves continuously. And many were confined 24/7 to a breathing device. It absolutely amazed me that they all seemed good natured about their circumstances and happy to be alive at all. That did it. I never complained to my mother again. Mind you I can still feel that old rage brewing up, from time to time. Trying to nail a nail over my head can do it instantly. But that day at the institute for polio patients made me realize that my parent’s constant litany that I was “lucky” was profoundly true. And I learned as well that there are things worse than school.
Alas, my troubles may not be over just yet. As early as 1875, it was noted in the medical literature that some paralytic polio patients can experience new muscle weakness and atrophy many years after the initial infection, often involving parts of the body that escaped paralysis during the initial infection. This secondary paralysis has become known as Post Polio Syndrome (PPS). What could account for this phenomenon? Several theories have been advanced.
Theory 1. Like AIDS, syphilis and other viruses, polio can somehow remain dormant in the body, often times for decades. Then something occurs to activate the virus, and “new” damage is done. This theory has been largely discredited, though scientists cannot rule out the possibility that there is some validity to it.
Theory 2. When polio first struck, nerves were wiped out, resulting in paralysis. However, with intense physical therapy, new nerve tissue, called “Axonal Sprouts” developed, affectively reconnecting the muscles to the brain. The growth of Axonal Sprouts can result in regaining movement and control where it had been lost. The problem is, Axonal Sprouts are not as robust as normal nerves, and they ware out with use over time. As these Axonal Sprouts deteriorate, new paralysis occurs.
Frankly, I’m not too fond of either theory. And these two theories produce very different recommendations as to how to avoid PPS. With theory 1, a person should stay in absolutely the fittest condition possible, exercising vigorously and daily in order to keep the virus dormant. Theory 2, on the other hand, would suggest rest, or in any event, finding ways to take stress off of muscle groups. To make matters worse, current research is troubling. The most conservative estimates indicate that polio survivors have a 25% chance of getting some form of PPS before they die. The most common estimate is that 70% of polio victims will experience PPS. Symptoms of PPS include inordinate fatigue, new muscle weakness, muscle pain, muscle twitching, sleeping difficulties, breathing difficulties, decreased tolerance to cold, joint pain, and in the end, an inability to carry on life’s activities. Of course, now that I know, I am experiencing all of these things all of the time! Actually, to tell the truth, I generally don’t think about PPS at all. There’s nothing I can do about it. It will or it will not occur.
As mentioned earlier, Franklin D. Roosevelt (FDR) contracted paralytic polio in 1929. The actual extent of his handicap was kept from the American people. Basically, his legs were both completely paralyzed. In 1938, FDR helped create the National Foundation of Infantile Paralysis. This group started an annual fundraising campaign called “The Mother’s March of Dimes”, which poured money into research to come up with a vaccine. My mother was the Holyoke Coordinator for our local March of Dimes, and I was the “poster-boy”. Pictures of me, in full leg braces (which I didn’t need so never wore) and an arm brace (which I hadn’t used since I was 5) appeared all throughout our area. Nationwide, the March of Dimes raised millions to develop the miracle that everyone yearned for – a vaccine which would prevent polio.
And in 1954, Jonas Salk of South Africa announced the first human trials of such a vaccine. Salk’s vaccine was based on first culturing and then killing wild polio virus, which then had to be injected into the blood (because one’s stomach would destroy the vaccine before it could develop antibodies in one’s system.) Salk himself refused to patent his vaccine; it was his gift to the world. Salk’s vaccine, called Inactivated Polio Vaccine (IPV) had several wonderful features. It could not lead to the recipient’s contracting polio, because the virus was completely dead. Likewise, it could not revert back to “wild” polio virus. But it had a few shortcomings. It did not confer lifetime immunity with one inoculation; some “booster” shots would be required. And most serious from a public health point of view, it had to be injected by a trained (and expensive) healthcare provider.
Research continued. In fact, there were many efforts competing to be the first to discover a vaccine which could be taken orally and would give a person protection for life. The two principle scientists working on this were Dr. Hilary Koprowki and Dr. Albert Sabin, who, like Jonas Salk, were working in Africa. Africa? Why Africa? Because the culturing process, which is the initial phase of any manufacture of a vaccine had to use “primate” tissues (mostly livers), and they have a lot of primates in Africa. Dr. Koprowki was first to announce an oral vaccine, and his vaccine was given to thousands of people in the Belgium Congo between 1957 and 1960. But after a few years, Dr. Koprowki’s vaccine was withdrawn from use. Lately, a journalist named Edward Hooper has made the claim that this “pre-mature” inoculation of thousands of Africans actually introduced AIDS into the human race, because Koprowki’s vaccine was cultivated on chimpanzee livers and was contaminated with SIV, or simian immunodeficiency virus, the immediate precursor to HIV (human immunodeficiency virus). It should be said that Hooper’s theory has many detractors, not the least is Dr. Hilary Koprowki himself. In any event, Dr. Sabin introduced his oral vaccine (OPC) in 1957, and after exhaustive clinical trials and studies, OPC was introduced into world health organizations for general use in 1962, and has become the “gold standard” for polio vaccine.
Because OPC is taken orally, it can be administered by the village dog catcher. Well, ok…. But it doesn’t have to be given as an injection by a licensed nurse. On a global scale, that is a huge difference in cost. And, unlike IPV, it gives one a lifetime protection from polio in one series of treatments. Of course, nothing is simple. OPC is not killed virus, so it can, in the rare case, actually give a child full blown paralytic polio. Talk about unintended consequences. Perhaps even more troubling, on a global scale, OPC can revert back to “wild” polio, making absolute eradication seem theoretically impossible. Hmmmm. Those are some drawbacks alright. Not surprisingly, there is sharp disagreement within the medical and scientific community. Many argue that despite the big differences in cost, only IPV vaccine should be used.
As a result of wide spread immunization in the schools, polio has slowed to a trickle in the "Western" developed countries. The last known case of “wild” polio in the USA was in 1972; the last case of “wild” polio in our hemisphere was in Peru in 1991. Worldwide, however, the statistics are much grimmer. The truth is many poor and developing countries have not been immunizing their children. All throughout the 1980’s, for example, cases of “wild” polio rarely fell below ½ million cases/year.
In 1959, the World Health Organization, an arm of the United Nations, launched a unique and pioneering campaign to literally eradicate the disease smallpox from the planet. Smallpox was a promising target for several reasons. First, the virus that caused smallpox could only live and reproduce in humans. Moreover, a single dose of smallpox vaccine confers lifelong immunity. This campaign was declared a success in 1980, and there have been zero cases of wild virus smallpox since then. With that monumental success in hand, in 1985, the International Rotary Foundation announced Polio Plus, a global initiative aimed at nothing less than the complete eradication of the polio virus from the earth. In 1988, Rotary International was joined by the World Health Organization, UNICEF and the Centers for Disease Control and Prevention in a world wide effort called the “Global Polio Eradication Initiative. Since that time, hundreds of millions of dollars have been raised, and hundreds of millions of inoculations have been administered around the world. The original goal was to wipe out wild polio completely by 2005.
The initial philosophy was simple to understand: every child in the world was to receive the full course of inoculations needed to confer life time immunity. Like smallpox, the polio virus can only survive in human hosts. If every single person in the world was inoculated, the virus would have nowhere to hide. In practice, the Initiative employed four key elements:
a. Routinely immunize every child in the world four times during the first year of life.
And the children were to be immunized for 6 major childhood diseases along side
immunization from polio.
b. Establish National Immunization Days (NID’s) in key countries where wild polio still
exists.
c. Establish a worldwide surveillance system so that no case of wild polio would go
unreported.
d. In the end, deploy house to house teams that would fan out around the globe to pick
up any children missed by the NID’s. Thousands of Rotarians throughout the world have
dropped out of their day jobs and volunteered to travel into the world’s politically most
dangerous places to personally administer the vaccine to children overlooked by the
NID’s.
By 2001, over a half a billion children were immunized in 94 countries. All in all, some 2 billion doses have been administered. As a result, the number of “polio endemic” countries fell from 20 to 10 and the geographical area of infections within these “endemic” countries has been sharply reduced. But political struggles and local wars have complicated these efforts. Not surprisingly, the “high intensity transmission areas where 85% of reported cases occur include Northern India, Pakistan and Afghanistan. Anyone interested in hopping over to Afghanistan to administer polio vaccine to little children? Low intensity transmission areas which account for 15% of reported cases are in Somalia, Sudan, Ethiopia, Angola and Egypt. But even here, the numbers are small. Type 2 wild polio virus has not been recorded anywhere in the world since 1999, and type 3 has been isolated only in India, Pakistan, Somalia and Nigeria. There are still countries at risk. Congo, Chad, Central African Republic, Democratic Republic of the Congo, Indonesia, Madagascar and Mozambique have reported no actual cases BUT have low immunization rates and poor public sanitation. Overall, the numbers of reported cases (and reporting has greatly improved) has dropped like a stone. Worldwide, in 1988 (just as Rotary was kicking off its Polio Plus program), there were an estimated 500,000 cases. In 1999, that number had dropped to less than 20,000; in 2001, less than 500 confirmed transmissions were reported.
Absolute worldwide eradication continues to be an allusive goal. There are many factors, including the ironic fact that the OPV vaccine can actually induce cases of polio and can revert back to “wild” polio. But by any standard, Polio Plus has been a global success story on a grand scale. Think of it. Down to only a few hundred cases per year from 500,000 worldwide before Rotary International kicked off their Polio Plus program! That is a whole lot of little arms and legs and chests that will not be rendered useless by this terrible disease! Every Rotarian throughout the world should be proud of this incredible result.
Right off the bat, it should be said that doctors in those days knew next to nothing about the disease. They had only vague ideas about what caused polio or how it was spread. They had even fewer ideas on how to treat it. They did note that the majority of cases struck very young children, but they had no idea why. The disease was first described by Michael Underwood in 1789, though “indications” of the disease date back to Egyptian hieroglyphics. It was confirmed as a virus in 1909 by Karl Landsteiner and Erwin Popper; they also confirmed two significant facts about polio: it was definitely contagious, somehow traveling between one host to another -- and – an initial infection conferred immunity to further infections.
Polio came in waves or epidemics. It first appeared as a disease to be reckoned with in Europe in the early 1800’s. Stockholm, Sweden suffered major outbreaks in 1887, 1905, and 1911. The first recorded outbreak in the USA occurred in Vermont in 1894. Slowly the disease picked up steam; the epidemic of 1916 left 6,000 dead and 27,000 disabled in New York State alone. There were outbreaks throughout the USA after that, occurring every few years. The lowest number of cases during the war years was 4, 167 (1940). My year, 1949, was a bad year with 42, 003 cases nation-wide. But the worst year was 1952 when a whopping 58,000 cases of paralytic polio occurred in the USA. Worldwide, the numbers went into the millions.
While doctors knew that the disease was caused by a virus, they knew little else. Most importantly, they did not know how the virus was transmitted from person to person. All kinds of theories abounded. A goodly percentage of kids growing up in the 1940s – 1950s never learned to swim because it was feared that the virus could hop from one kid to another through the water in swimming pools. Initially, there was a real stigma of having contracted the disease. Years ago, I met a women who became sick with polio around the time that I came down with the disease. She and her family had been living in the flats in south Holyoke. But when her father realized that she had polio, the entire family left their home in the middle of the night and secretly took residence in a house in South Hadley Falls. Her presence there was kept a secret for years, as the family feared that neighbors would “run them out of town” if they found out that a polio victim was living in their house. In my case, I was isolated from the rest of society for almost my entire 4th year in the Polio Ward at the Holyoke Hospital. To my knowledge, all the patients there were kids. The Polio Ward was a restricted area in the hospital. Only parents and health care givers were allowed in, and then only for short visits. It was considered highly dangerous for people to enter this ward. My parents were always grateful for the nurses and doctors who cared for the polio victims; it was understood that they were taking their life in their own hands just by walking into that room.
During that year in the hospital, I became progressively weaker. Eventually, almost my entire body was paralyzed. At one point, I was having difficulty swallowing and had to be fed through a tube. It was feared that my chest muscles would fail, making it impossible for me to breathe, so an “iron lung” was put next to my bed in case I started to suffocate. Thankfully, I never needed it. And boy, I mean “thankfully”! When you went into an iron lung, only your head and feet protruded from this huge, diving bell like apparatus. Few people who went into an iron lung ever came out. It was a life sentence of lying on your back while a machine breathed for you. But my chest muscles kept on working when just about every other muscle group simply stopped functioning. This was no small mercy. I have always been grateful for my chest muscles. Nice going, guys!!
The word poliomyelitis is derived from the Greek “polio” which means “grey” and “myelon” which means “marrow”. In other words, poliomyelitis is a disease of the Grey Marrow, which was taken to mean the spinal column. It is now understood that the polio virus was extremely common. Just about everyone was exposed to this virus as a child. Most kids weren’t even aware when the virus entered their bodies; their immune system simply “flushed” it out through their intestines. AND, this momentary ‘brush” with the killer gave them permanent immunity from the virus for the rest of their lives. In a very few cases, the virus managed to enter the victim’s blood stream, causing general flu like symptoms of fever and so on for a week or two. And in probably less than 1% of those cases where the virus entered the blood, it also managed to get into the central nervous system, where it traveled down the spinal column destroying motor neurons as it moved along. It is still not known why some few kids came down with full blown paralytic polio while the vast majority of kids didn’t even break a sweat. By the time most people entered their teenage and adult years, they had long since had their little run in with the polio virus and thereby obtained their lifetime “Get Out of Jail Free Card”.
Of course, there were always exceptions. Probably the best known was Franklin D. Roosevelt who contracted paralytic polio after he was married. The polio virus was particularly dangerous to adults who had not been exposed to the virus as a child. Ironically, modern sanitation has the potential of making us even more vulnerable to polio. It was frequently known as the Disease of Development. Why you might well ask? In areas of poor sanitation, virtually all kids are exposed to the virus, and most kids can defeat the virus with their own immune system. However, for kids living in the developed nations that have excellent public sanitation, natural exposure to the virus is less frequent, leading to the potential for more cases of adult on-set polio, like FDR.
It is now known that the polio virus traveled from host to host via what is called the “anal-fecal-oral route”........ Geese, Louise!!!!! Talk about piling on insult after injury!! “You know, Bobby, you were a strange little baby. Just as soon as you could crawl about on your hands and knees, you took an intense, even obsessive interest in the bottoms of other babies. This behavior embarrassed your mother and positively alarmed your father. But the doctors said it was just a phase, and that you’d grow out of it…….” No, it didn’t mean that at all. No doubt the majority of infections came simply because someone infected with the virus went to the bathroom and then did not wash and sanitize their hands before they handled food that others were going to consume. Still another pretty yucky thought, if you ask me.
There were three distinct types of paralytic polio. Some 70% of the cases were Type 1 or “Spinal Polio”. Type 1 polio almost always involved permanent paralysis, which was usually asymmetrical (meaning, for example, that one arm would be paralyzed and the other arm left unharmed.) Spinal Polio most frequently affected the patient’s legs. Type 2, Bulbar Polio occurred in some 2% of the cases and was considered to be the most dangerous and life threatening because it attacked the trunk – what today we would call a person’s core. Type 3 polio was a combination of the first two, called Bulbospinal Polio. Naturally, that’s what I had. This generally meant some sort of asymmetrical paralysis and the real possibility of dying because of “core shutdown”. Yup, Type 3 Bulbospinal Polio was the pick of the litter, no doubt about it.
In fact, I was on the Holyoke Hospital’s “Danger List” for just over nine months. When I came out of the Polio Ward, I was almost completely paralyzed, but with daily intense physical therapy that took place during my entire 5th year, I regained the use of most muscles that had been lost. By the time I entered school in my 6th year, I was only left with extensive paralysis in my upper right arm and shoulder, some general weakness in my right lower arm and hand as well as some fairly minor loss of my trunk muscles, which has led, over the years, to degenerative disc disease and substantial curvature of the spine. The good news was: my left arm and both my legs, indeed everything else in my body was just fine.
I have only vague memories of the Polio Ward at the Holyoke Hospital. Of course, I was just a little guy. I do remember the “hot packs”. There was a theory at the time that the virus was sensitive to heat, so the nurses would strap these electric, wool blankets all over my body, wet them with water and crank up the heat to “drive that awful bug away.” Hot packs had a peculiar smell, like burning hair. The heat was terrible, the wool was scratchy … ah, yes, I remember the hot packs all right. I remember that I could look out the window and see cars going up and down Hospital Drive; and occasionally, I could pick out my parents’ car as they drove away. It was scary for a little boy to see his parents driving away into the night, but the nurses were grand and made me feel like I wasn’t completely lost.
Oddly enough, my most vivid memory of the Polio Ward had to do with the floor. The Hospital had “linoleum” flooring, which was quite new for its day. Anyway, it was new to me. I had only seen wood floors with rugs. I was fascinated by the swirling colors that almost seemed to be three dimensional, and I spent hours lying in my hospital bed wondering what it would be like to walk on that floor. The nurses picked up on this desire and used it as a carrot; “Do all your exercises, and someday you will get strong enough to walk on this floor”. It became my most important goal in life. And I distinctly remember my excitement when my parents told me that I could go home the very next day. All I could think of was, “I’m going to walk on the floor”. But the next day, they wrapped me up in sheets and carried me out of the hospital (screaming all the way, mind you). One day, when I was in my 30’s, I suddenly remembered this “unfulfilled” wish. I spoke with Harold Pine, the Hospital president at the time. Harold did a little research and found out exactly what room I was in. This was in the “old” section of the Hospital, and the floors had never been changed. So Harold and I had a grand old time walking about on that silly floor together. I know Harold thought it was all very amusing. I am sure he had no inkling of what it meant to me.
My father was quite slender most of his life, and I was a slender baby. However, polio had made me dangerously thin. As my parents took me home, the doctors pulled my mother aside and stressed the importance of my gaining some weight. So my mother set out to “fatten me up”. I think it’s safe to say that she succeeded beyond their wildest dreams. But beyond getting lots of ice cream and such, that first year out of the hospital was difficult for everybody. For me, it meant arm and leg braces and endless exercises in physical therapy. On top of all this, my parents were constantly telling me how “lucky” I was. Of course, they were happy I was still alive, but a young boy frequently overlooks that basic blessing. That year began a major struggle between my mother, on the one side, and everyone else (my father, my grandmother, the doctors, etc) on the other side of the issue of how much help I should get from adults in getting through the basics of life. My mother hated to see me suffer, and she hated to see me frustrated, so her approach was to keep me in bed, or at least tight by her side and to virtually do everything for me. The doctors and my father kept warning her that if she insisted on doing even the simplest things, like getting me dressed, she would ultimately have a real, life time invalid on her hands. So she had to stand there and watch me battle zippers and buttons and such with one arm. But gradually, I learned how to do these things by myself.
The battle continued over the question of my being allowed to go “outside” the house on my own. I had no memory of ever being “outside” alone. “He’s not ready”, my mother would sob. “Sure he is” would be my father’s reply. At that point, both parents were looking at the calendar, wondering if I would be ready to start school when I turned 6 years old, like everyone else. So one day, I (with my mother fidgeting nearby) bundled myself up in a snowsuit which took about an hour. The front door was opened for me because the stupid snowsuit was so stiff, I could hardly move at all. I stepped forward, and my mother tearfully shut the door behind me. “Go make some friends”, was my father’s advice. I didn’t find any new friends, but within the hour, I had somehow managed to fall off a high wall, landing on the pavement below on my head, which promptly fractured my skull. This, of course, confirmed my mother’s worse fears. But the struggle continued, and, as it turned out, I did enter kindergarten that next fall. And I did make friends, just like my father suggested.
As a school child, I certainly had issues with “anger management”. Sports were hard for me, and I was always self-conscious about my arm, which hung uselessly at my side. I was the “ground” lookout when the neighborhood kids built a tree fort, because, with one arm, I was never confident climbing trees. Many sports I was terrible at, but I would never concede that fact. For example, I was “unbalanced”, really, so I could only turn in one direction when ice skating. Believe me, if you can only turn in one direction (to the right, it turned out), you don’t make a really great hockey player. Nevertheless, I played hockey all throughout my adolescent years. Special rules were made for me when we played sandlot football. I caught and threw both with my left hand playing baseball, which required me to catch the ball, take off my baseball glove and throw, not the greatest system ever when some kid is running like hell for 3rd base. Tossing the tennis ball for the serve was always tricky for me. With golf, my handicap never got in my way, and I was able to play pretty competitively for years. Likewise, my handicap had no affect on my playing soccer. But I was terrible at basketball, and slowly had to concede that basketball wasn’t going to be my sport. And all though this, my parents kept telling me how lucky I was. Sometimes, I will confess, it was difficult for me to see good fortune in all this.
Through all these trials and tribulations, I was always willing to torture my poor mother with constant whining and complaining. I am sure my mother suffered from “Mother’s Guilt” about my polio. As my mother, it was her job to keep me safe, and if something terrible got through her shields and hurt me, it was somehow her fault. Whining and complaining would almost always land me some kind of treat. And, of course, these “treats” generally helped me in my lifelong battle against being thin.
Yup, whining and complaining and asking why I was paralyzed and other kids were not worked just about every time….until one day, that is. One fateful day, I griped just a tad too much about being handicapped. My mother exploded, and the next day, I was kept out of school and taken to a Long Term Care Facility for polio patients. Most of the patients were kids my age. One or two of them had been in the Polio Ward of the Holyoke Hospital when I was there. All had handicaps so profound as to make any kind of life outside an institution impossible. Many of the kids had no use of any of their arms or legs. Virtually everything had to be done for them. They couldn’t even hold their heads up straight. Many had lost control of their facial muscles and drooled on themselves continuously. And many were confined 24/7 to a breathing device. It absolutely amazed me that they all seemed good natured about their circumstances and happy to be alive at all. That did it. I never complained to my mother again. Mind you I can still feel that old rage brewing up, from time to time. Trying to nail a nail over my head can do it instantly. But that day at the institute for polio patients made me realize that my parent’s constant litany that I was “lucky” was profoundly true. And I learned as well that there are things worse than school.
Alas, my troubles may not be over just yet. As early as 1875, it was noted in the medical literature that some paralytic polio patients can experience new muscle weakness and atrophy many years after the initial infection, often involving parts of the body that escaped paralysis during the initial infection. This secondary paralysis has become known as Post Polio Syndrome (PPS). What could account for this phenomenon? Several theories have been advanced.
Theory 1. Like AIDS, syphilis and other viruses, polio can somehow remain dormant in the body, often times for decades. Then something occurs to activate the virus, and “new” damage is done. This theory has been largely discredited, though scientists cannot rule out the possibility that there is some validity to it.
Theory 2. When polio first struck, nerves were wiped out, resulting in paralysis. However, with intense physical therapy, new nerve tissue, called “Axonal Sprouts” developed, affectively reconnecting the muscles to the brain. The growth of Axonal Sprouts can result in regaining movement and control where it had been lost. The problem is, Axonal Sprouts are not as robust as normal nerves, and they ware out with use over time. As these Axonal Sprouts deteriorate, new paralysis occurs.
Frankly, I’m not too fond of either theory. And these two theories produce very different recommendations as to how to avoid PPS. With theory 1, a person should stay in absolutely the fittest condition possible, exercising vigorously and daily in order to keep the virus dormant. Theory 2, on the other hand, would suggest rest, or in any event, finding ways to take stress off of muscle groups. To make matters worse, current research is troubling. The most conservative estimates indicate that polio survivors have a 25% chance of getting some form of PPS before they die. The most common estimate is that 70% of polio victims will experience PPS. Symptoms of PPS include inordinate fatigue, new muscle weakness, muscle pain, muscle twitching, sleeping difficulties, breathing difficulties, decreased tolerance to cold, joint pain, and in the end, an inability to carry on life’s activities. Of course, now that I know, I am experiencing all of these things all of the time! Actually, to tell the truth, I generally don’t think about PPS at all. There’s nothing I can do about it. It will or it will not occur.
As mentioned earlier, Franklin D. Roosevelt (FDR) contracted paralytic polio in 1929. The actual extent of his handicap was kept from the American people. Basically, his legs were both completely paralyzed. In 1938, FDR helped create the National Foundation of Infantile Paralysis. This group started an annual fundraising campaign called “The Mother’s March of Dimes”, which poured money into research to come up with a vaccine. My mother was the Holyoke Coordinator for our local March of Dimes, and I was the “poster-boy”. Pictures of me, in full leg braces (which I didn’t need so never wore) and an arm brace (which I hadn’t used since I was 5) appeared all throughout our area. Nationwide, the March of Dimes raised millions to develop the miracle that everyone yearned for – a vaccine which would prevent polio.
And in 1954, Jonas Salk of South Africa announced the first human trials of such a vaccine. Salk’s vaccine was based on first culturing and then killing wild polio virus, which then had to be injected into the blood (because one’s stomach would destroy the vaccine before it could develop antibodies in one’s system.) Salk himself refused to patent his vaccine; it was his gift to the world. Salk’s vaccine, called Inactivated Polio Vaccine (IPV) had several wonderful features. It could not lead to the recipient’s contracting polio, because the virus was completely dead. Likewise, it could not revert back to “wild” polio virus. But it had a few shortcomings. It did not confer lifetime immunity with one inoculation; some “booster” shots would be required. And most serious from a public health point of view, it had to be injected by a trained (and expensive) healthcare provider.
Research continued. In fact, there were many efforts competing to be the first to discover a vaccine which could be taken orally and would give a person protection for life. The two principle scientists working on this were Dr. Hilary Koprowki and Dr. Albert Sabin, who, like Jonas Salk, were working in Africa. Africa? Why Africa? Because the culturing process, which is the initial phase of any manufacture of a vaccine had to use “primate” tissues (mostly livers), and they have a lot of primates in Africa. Dr. Koprowki was first to announce an oral vaccine, and his vaccine was given to thousands of people in the Belgium Congo between 1957 and 1960. But after a few years, Dr. Koprowki’s vaccine was withdrawn from use. Lately, a journalist named Edward Hooper has made the claim that this “pre-mature” inoculation of thousands of Africans actually introduced AIDS into the human race, because Koprowki’s vaccine was cultivated on chimpanzee livers and was contaminated with SIV, or simian immunodeficiency virus, the immediate precursor to HIV (human immunodeficiency virus). It should be said that Hooper’s theory has many detractors, not the least is Dr. Hilary Koprowki himself. In any event, Dr. Sabin introduced his oral vaccine (OPC) in 1957, and after exhaustive clinical trials and studies, OPC was introduced into world health organizations for general use in 1962, and has become the “gold standard” for polio vaccine.
Because OPC is taken orally, it can be administered by the village dog catcher. Well, ok…. But it doesn’t have to be given as an injection by a licensed nurse. On a global scale, that is a huge difference in cost. And, unlike IPV, it gives one a lifetime protection from polio in one series of treatments. Of course, nothing is simple. OPC is not killed virus, so it can, in the rare case, actually give a child full blown paralytic polio. Talk about unintended consequences. Perhaps even more troubling, on a global scale, OPC can revert back to “wild” polio, making absolute eradication seem theoretically impossible. Hmmmm. Those are some drawbacks alright. Not surprisingly, there is sharp disagreement within the medical and scientific community. Many argue that despite the big differences in cost, only IPV vaccine should be used.
As a result of wide spread immunization in the schools, polio has slowed to a trickle in the "Western" developed countries. The last known case of “wild” polio in the USA was in 1972; the last case of “wild” polio in our hemisphere was in Peru in 1991. Worldwide, however, the statistics are much grimmer. The truth is many poor and developing countries have not been immunizing their children. All throughout the 1980’s, for example, cases of “wild” polio rarely fell below ½ million cases/year.
In 1959, the World Health Organization, an arm of the United Nations, launched a unique and pioneering campaign to literally eradicate the disease smallpox from the planet. Smallpox was a promising target for several reasons. First, the virus that caused smallpox could only live and reproduce in humans. Moreover, a single dose of smallpox vaccine confers lifelong immunity. This campaign was declared a success in 1980, and there have been zero cases of wild virus smallpox since then. With that monumental success in hand, in 1985, the International Rotary Foundation announced Polio Plus, a global initiative aimed at nothing less than the complete eradication of the polio virus from the earth. In 1988, Rotary International was joined by the World Health Organization, UNICEF and the Centers for Disease Control and Prevention in a world wide effort called the “Global Polio Eradication Initiative. Since that time, hundreds of millions of dollars have been raised, and hundreds of millions of inoculations have been administered around the world. The original goal was to wipe out wild polio completely by 2005.
The initial philosophy was simple to understand: every child in the world was to receive the full course of inoculations needed to confer life time immunity. Like smallpox, the polio virus can only survive in human hosts. If every single person in the world was inoculated, the virus would have nowhere to hide. In practice, the Initiative employed four key elements:
a. Routinely immunize every child in the world four times during the first year of life.
And the children were to be immunized for 6 major childhood diseases along side
immunization from polio.
b. Establish National Immunization Days (NID’s) in key countries where wild polio still
exists.
c. Establish a worldwide surveillance system so that no case of wild polio would go
unreported.
d. In the end, deploy house to house teams that would fan out around the globe to pick
up any children missed by the NID’s. Thousands of Rotarians throughout the world have
dropped out of their day jobs and volunteered to travel into the world’s politically most
dangerous places to personally administer the vaccine to children overlooked by the
NID’s.
By 2001, over a half a billion children were immunized in 94 countries. All in all, some 2 billion doses have been administered. As a result, the number of “polio endemic” countries fell from 20 to 10 and the geographical area of infections within these “endemic” countries has been sharply reduced. But political struggles and local wars have complicated these efforts. Not surprisingly, the “high intensity transmission areas where 85% of reported cases occur include Northern India, Pakistan and Afghanistan. Anyone interested in hopping over to Afghanistan to administer polio vaccine to little children? Low intensity transmission areas which account for 15% of reported cases are in Somalia, Sudan, Ethiopia, Angola and Egypt. But even here, the numbers are small. Type 2 wild polio virus has not been recorded anywhere in the world since 1999, and type 3 has been isolated only in India, Pakistan, Somalia and Nigeria. There are still countries at risk. Congo, Chad, Central African Republic, Democratic Republic of the Congo, Indonesia, Madagascar and Mozambique have reported no actual cases BUT have low immunization rates and poor public sanitation. Overall, the numbers of reported cases (and reporting has greatly improved) has dropped like a stone. Worldwide, in 1988 (just as Rotary was kicking off its Polio Plus program), there were an estimated 500,000 cases. In 1999, that number had dropped to less than 20,000; in 2001, less than 500 confirmed transmissions were reported.
Absolute worldwide eradication continues to be an allusive goal. There are many factors, including the ironic fact that the OPV vaccine can actually induce cases of polio and can revert back to “wild” polio. But by any standard, Polio Plus has been a global success story on a grand scale. Think of it. Down to only a few hundred cases per year from 500,000 worldwide before Rotary International kicked off their Polio Plus program! That is a whole lot of little arms and legs and chests that will not be rendered useless by this terrible disease! Every Rotarian throughout the world should be proud of this incredible result.
