A POST POLIO "NORMALíS" RECONCILIATION PART 1 OF TWO PART ARTICLE
WITH THE GHOST OF POLIO PAST
Sandra Hughes Grinnell
Independent Medical Researcher
PART 1 OF TWO PART ARTICLE
"I enjoyed reading your article. Most of us were completely taken by surprise when the syndrome began to appear. We did recognize that some people might have weakness resulting in scoliosis but in those people who seemed to be perfectly normal we did not anticipate any further difficulty. In retrospect, you are probably correct that people who had recovered, apparently completely, should be followed, and their areas of weakness identified and, as you say, protected." -Frederick C. Robbins, M.D. (Author's NOTE: excerpt from personal letter to me)
NOTE: (Drs. Robbins, Enders and Weller of Harvard won the Nobel Prize for the discovery that polio virus would grow in tissue cultures of non-nervous human tissue.)
By writing about my own case publicly, I hope that some of what I learned will help others to help themselves. To those of you reading this article who wish to begin your own research efforts, the important thing is to jump in with both feet and do your best!
I am defining a post-polio normal as a person with a well-documented history of polio who has in recent years or is presently experiencing one or more late-effect symptoms but continues to function without any ambulatory aids, adaptive equipment, or respiratory assistance.
"How can it be that I am experiencing post-polio symptoms?" I asked Dr. Jacquelin Perry at the Polio Clinic at Rancho Los Amigos Medical Center in Downey, California. " It has always been assumed that I had made a complete recovery." She gently put her hand on my shoulder and said, "My dear, you must understand that Polio comes like a thief in the night, and when it leaves it takes part of you with it."
Dr. Perry used that simile in August of 1984. It had a powerful impact on me and would forever symbolize a major turning point that gradually enabled me to make order out of chaos regarding my understanding of and control over my stamina-related health problems of many years. In the five years since Iíd been to the polio clinic to be evaluated, Iíd come up with the following analogy for those of us who make up the post-polio population:
In all our interactions with people, first impressions greatly influence our perceptions, and most of this initial reaction is based on how we appear on the outside. There is an old saying that "A pictureís worth a thousand words." For the most part, I would agree, but in the case of a post-polio normal that picture is often an illusion because many of use who look so solid and healthy on the outside are like slices of swiss cheese on the inside. Just as swiss cheese comes with big and little holes, many of us are experiencing a range of symptoms which have variations in size. Ironically, for years we substituted muscles so efficiently in ways that we were completely unaware of that we, in effect, totally camouflaged those invisible holes, which are referred to in the medical literature as "uneven levels of muscle strength."
In my opinion, the post-polio normal walks (literally and figuratively) a middle ground. We have a documented history of polio which we minimized for years because it conjured up "ghostly" images of wheelchairs and crutches and in the worst cases life support systems such as the "iron lung." For reasons often thought of as no less than "miracles" by our families and friends, we re-entered the part of the population that had never been infected by this disease. We are only now beginning to learn that in our eagerness to fit in again, we have been putting some of our muscles under exceptionally high levels of stress. I personally reached a point in my life where I had to seriously question the validity of the claim that I had made a " complete recovery" and hope that my doctors would share in my skepticism.
Ironically, even after I had been to the polio clinic in 1984, was thoroughly evaluated, finally diagnosed in writing as a " post-polio normal", and had acknowledged the fact that I must slow down in order to stay independent, there was a part of me that wanted to run the other way. At that point the segment of the polio population with visible residuals became a living ghost to me - a vivid reminder of what could have happened years ago and if God were playing a bad joke on me, could still happen now. I think it is important to note that this had been the first follow-up visit with polio specialists since my recovery from the initial illness in 1953 at age ten. The chain of events that lead up to that appointment began in the early summer of 1984.
In June, after recovering from an episode of lower back spasms which had required two weeks of bed rest and some physical therapy to relieve, my orthopedic surgeon was feeling a combination of concern and increasing frustration with my unrelenting and more frequent back problems as the years progressed. After all, since he had become my doctor in 1975, my records showed that I had experienced 19 episodes of lower back pain leading up to this most recent one! X-rays showed a mild narrowing at the lumbar 4-5 interspace in my lower back, but it was not felt to be solely responsible for such numerous attacks.
In the medical summaries I had forwarded to me, it was always noted that I had "bulbar" polio in 1953 (involving the part of the brain at the top of the spinal column), but no connection was made to ongoing episodes of incapacitating spasms. On several occasions between 1975 and 1984, I asked my orthopedist if he thought my recurring upper and lower back problems could be related to my history of polio. He definitely did not think so, but he, like my other doctors at the time, had not been trained in the ongoing treatment of polio patients while in medical school. Whatever doubts I was sometimes beginning to have were suppressed by my doctorsí consistent opinions that there was absolutely no connection to old polio.
In June of 1984, my orthopedist suggested I get into a swimming class as soon as possible. We both knew swimming was not at the top of my list of favorite sports for exercise, but I had literally exhausted every other option. Each of the 20 episodes since 1975 had been the end result of some new sport I had taken up (tennis, golf), a new hobby I had pursued (dancing, painting workshops, acting), or a job that I held in a creative field (fashion display work). My orthopedist and I agreed that an aerobic swim class might be the answer because it would combine swimming and dancing to music in water and would minimize any shock to my spine. I proceeded to have a bicycle EKG and some generalized fitness tests for endurance to see if I could also get into some low level Nautilus program in an attempt to develop more muscle strength. The tests were going smoothly until I tried to bench press a bar bell with no added weight, and I not only could not lift it off my chest, I couldnít even hold in above my chest without assistance from the instructor.
As had always been the case since my college days, things started out great! I was going three times a week, and the first week I felt energized. During the weekend before the fourth class, however, I began to experience a very localized tiredness and cramping in my chest and upper back, and my breathing was somewhat labored. I forced myself to go to the Monday class and halfway through the class I felt as though my muscle strength was now regressing, but I pushed myself (as usual) to finish.
What I experienced for the next 72 hours I thought to myself had to be felt to be believed. The only time I ever had that kind of a pain syndrome that I was aware of was when I was admitted to the hospital in 1953, in the acute stages of polio. It is important to note that at the time I was experiencing this pain and exhaustion in my upper body, I had not heard of or read one word about post-polio problems. Muscle relaxants and aspirin were giving me no relief whatsoever. The only thing that helped was rest. I remember that the feeling was beyond what I could logically comprehend. Tears were running down my face in physiological reaction to the pain.
The fact that I was in excellent health as far as routine physicals go prompted me to find some recent articles on reactions to aerobic exercise that might explain my situation. After a couple of days of total bed rest, I decided to venture over to the library. While I was there I noticed my arms and hands were so weak and cramped I could barely lift the reference books, and the repetition of turning pages was beginning to become extremely difficult. As more time elapsed, I felt a lessening of hand coordination.
Finally, when my breathing became labored, I immediately called my internist. After summarizing my symptoms of the past few days, he sounded as perplexed as I was. He speculated that perhaps it was an acute anxiety attack causing hyperventilation. I told him that unlike anxiety attacks that (no matter how overwhelming and incapacitating they are) come intermittently during a 24-hour period, and cause generalized body weakness, my "attack" had been completely localized, involving my chest, upper back, and arms. The symptoms were unrelenting in nature and only began to subside after many hours of complete bed rest. I mentioned that I had not felt this much pain in my spine since Iíd had polio as a child.
Luckily, a young intern sitting near the phone at the library that day, overheard my remark about having had polio. By coincidence, he told me that he had recently read a newspaper article quoting Dr. Richard Bruno at Columbia University in which he cited cases of a seemingly sudden loss of muscle strength approximately 30 years after the onset of polio and problems with pain and loss of function in the hands. (I would later learn that the muscle strength loss was a gradual process over many years, with the cumulative effect being experienced as a sudden drop in function about 30 years after onset.)
Upon reading the article about Dr. Brunoís research for myself, I decided that the first thing I had to do was to document my case with my own medical records of polio. I had several long distance phone conversations with the medical clerks at the hospital where I had been cared for in 1953 and was devastated to be told that after a thorough search, it was confirmed that my records had been destroyed in a fire back in the 1960ís.
I then called my parents to find out what they could remember about my stay in the hospital. They told me that the head of the polio ward at the hospital I was admitted to was Dr. Frederick C. Robbins of "Enders, Weller, and Robbins" fame who won the Noble Peace Prize for polio research which would make possible the development of the Salk and later the Sabin vaccine. Through my local hospital library I found out that he was currently President of the Institute of Medicine at the National Academy of Sciences in Washington, D.C. I wanted to write to him about my present situation, but in view of the fact that 30 years had passed and I had no medical records of polio available to forward to him, I decided against it.
There would be someone from my past, however, who would be instrumental in getting me the help I needed. In the mid 1970ís, while volunteering in the childrenís ward at Orthopedic Hospital in Los Angeles, I had the good fortune to become acquainted with Dr. Thomas Gucker III. He was at the time Assistant Medical Director of the hospital and a well-known orthopedic surgeon and medical research scholar. He himself had had polio as a youngster, requiring a leg brace for walking. Now in July of 1984, I re-established contact with him by phone, and he invited me to drop by his office for a visit. He first encouraged me to be evaluated by Drs. Armin Fischer and Jacquelin Perry (both top polio specialists) at Rancho Los Amigos Medical Center in Downey, California. Since Dr. Perry had been his physician for a number of years, he proceeded to set up the appointments personally. (He did not think he himself had post-polio related problems and was at first skeptical of my symptoms being related to old polio - in view of my level of recovery. I would remind him in months to come, regarding his initial skepticism, that in his case, due to years of coaching by Dr. Perry to "slow down and protect his energy reserves" long before her advice was available to the post-polio population at large, he probably was spared getting into trouble in the first place. He conceded that may have very well been true!)
Arrangements were made for me to be seen at the polio clinic in August of 1984. My first appointment was to be with Dr. Armin Fischer, who later co-authored the now established Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors. Since "looking so normal" had always worked against me in the past when trying to relate my problems to old polio, when I did finally meet Dr. Fischer in person, the first thing I said to him was: "I want to ask you a favor. I have been blessed in this life with looking physically fit. Therefore, Iíd like you to "look at me through your ears", so to speak, today, and give me a totally objective hearing regarding my recurring symptoms before you make any evaluation. He proceeded to give me over two hours of his valuable time and even though I had been unable to get the formal records of my polio case from 1953, based on what I described to him that day, he would later write in his summary evaluation of our visit: "Her symptoms of fatigability and weakness may very well relate to overuse syndrome that has been seen in patients with residuals of poliomyelitis." With reference to my need to rest for longer periods of time between periods of more intense physical activity and my reaction to my most recent aerobic swimming attempts, he notes: "She has noticed muscle tenderness, most prominently in the pectoral regions, and she does feel discomfort in the parasternal region - associated with cramping and fatigability and has complained of weakness in her hands - she finds she has to rest sometimes for a day following intense physical activity." (Note: The pectoral muscles are in the chest and the parasternal region refers to the area of the breast bone. Chronic weakness and fatigue in this area can affect breathing and, as I understand, can cause a form of hyperventilation that could be thought to be symptomatic of severe anxiety when not properly diagnosed.)
As I read and re-read his report, the medical terminology used to describe my symptoms seemed so similar to something I had read about myself before, but I could not remember where. Later on, as I began obtaining just about every medical record that had ever been kept on me (except my original polio records) an old report arrived from a hospital in Santa Barbara, California, where our family had lived I the 1960ís. It was from the Department of Orthopedics, stating that I had been seen in the Fall of 1966 suffering from upper back spasms. In describing the source of my problems the report said in part, "There is marked tenderness to palpitation of the entire interscapular musculature and in the definite nodules of the musculature." (Note: the interscapular musculature refers to muscles between the shoulder blades. These muscles in part include the trapezius muscles, some of which I would later learn were creating a lot of my upper body weakness.) It is also noted that I have been seen in the past years with similar complaints especially during intense periods of continuous writing when taking college exams.
This information was important to consider in view of an article in the 1980 issue of the Rehabilitation Gazette by well-known polio specialist, Dr. Frederick Maynard, in which he stated with regard to late effects of polio: "Symptoms in case studies have begun as early as eight years or as late as 57 years after onset of the disease." Upon reviewing my various medical records one more time, I calculated that my lower back problems requiring medical attention began in 1962, only 9 years after the onset of polio. The recurring pain between my shoulder blades and chest began in 1963, only 10 years after the onset, and with increasing intensity requiring medical attention beginning 13 years after the onset.
The possibility that there was a pattern all those years that could be directly traced back to my history of polio became highly probable in view of the muscle resistance tests that were performed on my entire body at the polio clinic in 1984.
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Reprinted from Polio Network News Vol. 5, No. 4 Fall 1989 and Vol. 6, No. 1 Winter 1990
with permission of Gazette International Networking Institute,
4207 Lindell Blvd., #110, St. Louis, MO 63108-2915
© Polio Network News and Sandra Hughes Grinnell
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