A POST POLIO "NORMAL’S" RECONCILIATION
PART 2 OF TWO PART ARTICLE
WITH THE GHOST OF POLIO PAST
Sandra Hughes Grinnell
Independent Medical Researcher
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PART 2 OF TWO PART ARTICLE
During the muscle resistance tests performed on me at the Rancho Los Amigos Polio Clinic in 1984, muscles were evaluated that had not been tested since the onset of polio in 1953. A significant variation in muscle strength in the trapezius muscles (located in the upper back) was found. Upper trapezius muscles left and right, good; middle trapezius left and right, fair plus; and lower trapezius left and right, poor. I asked the therapist if that major drop from good to poor could account for the incapacitating attacks of pain and fatigue I had experienced for many years in that area and represent a residual loss of muscle strength directly related to "old polio". He answered with an emphatic "yes, absolutely" to both questions. It was the first "yes" I had heard from the medical profession with regard to questions making a connection to my polio experience since a doctor said to my parents in 1953, "Yes, your daughter has polio." Now, in 1984, the "yes" was actually comforting to hear, because it put some logical perspective on my present situation.
Also, I learned during the trapezius muscle tests that I was not lifting myself up from a lying position with any significant upper body assistance. I was going through the motions with the arms and hands and it appeared as though I was lifting myself up, but I learned that in reality I was substituting muscles and lurching into a sitting position using my low back and abdominal muscles. In hindsight, I realize that since I had graduated from college I had gained 25 lbs., and my abdominal muscles were not as strong as they used to be. It is true that with the exception of shortened hamstrings, my lower extremities were not initially affected by polio. However, it makes sense to me that the uneven levels of muscle strength in my upper back combined with increased stress on my low back muscles (as my abdominal muscles weakened) to pull me up with this lurching motion could have been the cause of all those low back spasm episodes that had always occurred after repetitious physical exertion since 1962. (and with increasing frequency each year since 1975).
Now in early September of 1984, while looking through some medical journals, I noticed a letter written by a physician complaining of the sorry state of affairs in medical records departments across the country. Doctors were often told records were not available when in fact they were. I began to wonder if my own polio records had really been destroyed in a fire. I decided that without further delay I must write a letter to Dr. Frederick Robbins at the National Academy of Sciences. Even if he did not remember my case, he might take an interest simply because doctors that he had some acquaintance with during the polio epidemics were directly involved at present. On September 30, 1984, I received a two-part letter from him. He said in part, "…it was most interesting to hear from someone I treated 30 years ago. I do not remember your specific case after 30 long years, but the records should be available at the hospital." He then suggested that I get in touch with a doctor who was, he wrote, "the only doctor from those days who is still there." That night I sat down and wrote to the physician he had specified. I enclosed a copy of Dr. Robbins' letter. In December 1984, a copy of the original transcript of my polio care in 1953 arrived in the mail along with a note from the doctor expressing his dismay that I had been given erroneous information regarding the status of my records. He had personally gone into the medical archives to locate them. (They arrived with narry a "char" mark on them!) What I learned from those records is a good illustration of why they are worth the extra effort to obtain!
First of all, because I did not require respiratory care during my two-week stay in isolation at the hospital, the records indicate a change of status from an initial diagnosis of "bulbar" polio upon admission to a diagnosis at the time of discharge of "non-paralytic poliomyelitis." The records showed "bulbar symptoms" which involved "difficulty swallowing" two days prior to admission. An interesting fact regarding my diagnosed "bulbar symptoms" (for which I was put in isolation) is that upon discharge from the hospital after the customary two-week stay, "my gag reflexes were present, but weak. " I must note that on many occasions from my college days on, when I was involved in theatre productions or jobs involving daily speaking engagements, I would lose my voice, but there was no throat infection on any of those occasions! My problem was extreme muscle fatigue in my throat and the only thing that helped was resting my voice for a couple of days or more. I got to the point in the late 1970's that I would not schedule activities of that nature on a daily basis because if I did, I would have to give the activity up altogether.
At the time of my release from the hospital my records show that I still had a stiff neck and tight hamstring muscles with some stiffness in the lower back, but a muscle evaluation at that time did not indicate muscle weakness. The discharge recommendations were that my parents have a physical therapist come to our home twice a day for six weeks to help me regain flexibility in my hamstring muscles. My legs gradually began working well again, but the hamstrings remain shortened, and I need to stretch them every day so as not to injure them. Upon leaving the hospital the record states that I was "referred to private physicians." Now in 1989, Dr. Jacquelin Perry, upon reading a rough draft of this article, advised me by letter that "a more appropriate diagnosis would have been 'bulbar-spinal' to identify scattered involvement here and there."
Interestingly, my parents would tell me two very revealing things in September of 1984, in light of my sharing the news that I had received my polio records. First, upon my release from the hospital one of the doctors on staff said to them, "Your daughter will make a complete recovery except for the fact that she will not have a normal level of stamina during her lifetime."
My parents decided that to tell me would set limits on me at the outset; so they just kept an eye on me and gave me gentle reminders to "pace myself". Because I was at my peak recovery in my high school and early college years, I am glad they chose not to tell me at that time.
The second thing my parents told me in 1984 was that before I had polio I had a very flexible spine. After I returned home from the hospital and started to resume normal activities, they noticed that I was still very well coordinated but my spine had lost a lot of its original flexibility. It just seemed that afterwards I had to work a lot harder at athletic activities I had accomplished with ease before I had polio. I think this may be a good example of the ability to substitute muscles instinctively during the initial recovery phase of polio. Enter the "swiss cheeze analogy". As the years passed I began to minimize any connection between having to give up some activity I enjoyed and poor stamina.
Because I continued to be in excellent health as far as routine annual physicals go and because I had been repeatedly told by the medical profession that my muscle weakness and spasms had absolutely nothing to do with polio---I virtually stopped talking about it. I continued to get totally absorbed in many different jobs, community activities, and hobbies for as long as I could. If I eventually began to get into trouble with major muscle spasms, I would quit that activity, get some physical therapy, and rest before charging into a whole new area. I was always hoping I would use my muscles differently in a new endeavor. (I would later learn that it was the extended repetitious use of weakened muscles that was the problem.)
In October of 1984, I started thinking about that day back in June when I crossed paths with the young intern in the local hospital library who had directed me to the article he had read by Dr. Richard Bruno at Columbia University on post-polio problems. I decided to send Dr. Bruno a note along with the documentation of my medical history that I had gathered so far. In a handwritten note from him in response, he said in part, "As you suggest, it is vital that we know that "normal" post-polios who don't have residuals are reporting weakness and fatigue; you are not alone!" He concluded the letter by writing, "Best wishes and best of luck both personally and in educating the physicians in your area."
In November of 1984 I received a letter from Dr. Tom Gucker whom I mentioned earlier. He wrote that "It is vitally important not to confuse similar neuro-muscular diseases." He went on to say, "I admire your zeal about research but suggest that it is a very complex and demanding endeavor." Needless to say, he was pleased upon his return from several back-to-back speaking engagements to review the original acquired copy of my original polio records! I told him that in keeping with a determined "polio personality" (which obviously included his own), I viewed the comments in his letter on the demands of ongoing research as a challenge, which with my new understanding of how to conserve my energy would be one activity I would not have to give up. He, and he alone, had created a climate in which the logically oriented side of my brain was to thrive and get me to where am now. My only regret is that he did not live long enough to witness it.
Dr. Gucker's untimely death brought on by a sudden and unexpected stroke in August of 1986 would have left a tremendous void in my research efforts if it were not for my personal physicians taking a renewed interest in my case after reviewing my original polio records and the medical summaries from the polio clinic in August of 1984, along with highlights of some of the post-polio research in general.
I realize that everyone does not have the time to get as involved in the research process as I have done or the desire to write in this format, but people who have developed a chronic problem are probably spending more time focusing on the problem than they realize and could spend the time far better focusing on a solution through their own research efforts. Often doctors wil evaluate a person as being obsessed with their problems. Obsession in and of itself is not a problem. After all, getting through medical school is an obsession! When a patient becomes obsessed with solutions to problems, it changes the whole nature of the doctor-patient relationship. It becomes a partnership. The important thing is that your communicate results in writing to as many people in the medical profession as you can—not necessarily an effort such as mine, but a simple one-page case study which can be used for reference and further evaluation within the medical community later on.
I sincerely hope in taking you through my research journey during the past 5 years, I have shown you that it is possible to experience renewed vitality by reconciling with the "ghost of polio past" I referred to at the outset. I have personally found that it is only by losing fear through knowledge, understanding, and finally acceptance that we gain control over our problems and see the "ghost" as no longer a threat but rather a source of knowledge. In my own case, because of what I learned at the polio clinic regarding my areas of muscle weakness in 1984, combined with the exercise routine that I have developed during the past few years, I have not had another incapacitating episode of upper or lower back spasms of the nature outlined earlier in part 1 of this article.
If I start to experience pain associated with inflammation from occasional over use of weakened muscles, I have found that cold packs applied to the problem area for five to ten minutes give very quick relief and often eliminate the necessity for bed rest in order to resume normal activities. Dr. Jacquelin Perry has often referred to post-polio problems being not unlike the "overuse syndrome" seen in athletes. In sports medicine cold packs are routinely used for tired, swollen muscles, so I decided to try them, with excellent results. Dr. Perry recently explained to me in polio the pathology is a neuritis (or inflammation of involved nerves) which responds well to heat, whereas the late effects of polio represent various stages of tissue damage with the first reaction being an inflammation of the involved tissue—which responds well to cold. (Note: it is advisable to check with your Doctor or Physical Therapist to evaluate whether or not you should use cold pack therapy for your particular problem—to make sure it is a problem that will respond positively to cold therapy)
At my request, in the spring of 1989 my orthopedist gave me an open-ended prescription for some routine physical therapy to eliminate some lingering deep muscle spasms that were not causing pain but were limiting my range of motion and general flexibility. During the course of those treatments (twice a week for six weeks) my physical therapist applied a "medical establishment version" of acupressure to my thoracic spine (upper back). This procedure, which in my case consisted of four treatments in a two-week period of time, is referred to as "thoracic mobilizations—spinous processes". The result has been a dramatic return of strength and function to my arms and hands as long as long as I do not push myself beyond my limits. By doing slow stretching and deep breathing exercises combined with riding an exercise bicycle for 5-10 minutes daily with zero to low resistance, I have gradually lost 25 pounds and have kept it off. My muscle tone is actually better than it was when I was in college. By exercising with minimal resistance (as recommended in formal post-polio guidelines) and avoiding prolonged repetitious activities which require heavy use of the trapezius muscles, I have gradually built up acceptable energy reserves to protect the lower trapezius muscle group which I know is almost non-functional. I can now consciously protect the same muscles that for years I had instinctively overused.
The quality of my home life has always come first during my marriage, and when I have worked outside the home, it has always been part-time by choice—aside from the issue of stamina. I am very fortunate to continue to have a choice because in all honesty the pursuit of a full-time career at this point in my life would be totally "beyond my limits" physically. I feel it is important to include this information because it could well be that my ability to turn things around rather dramatically is due in part to a life-style that affords me a better opportunity to pace myself and to get the rest I need when I really need it. This may not be the case for a post-polio person who works full time to make ends meet and may even live alone. I am optimistic that what I have accomplished can be of great value to many others no matter what their level of disability but at the same time I do not want to over-simplify the solutions due to different life circumstances to be considered.
A final thought: perhaps the more severely disabled members of the polio community have unintentionally contributed to the dilemma that many post-polio normals find themselves in when trying to get appropriate medical care. Based on those "first impressions" I spoke of at the outset of this article, they often view the possibility of our symptoms stemming from old polio with as much skepticism as our doctors often have! Possibly, just as we "normals" fear them as reminders of the things that could have happened, they may look upon the rest of us with resentment because we symbolize the many people who fared so much better than they did at the outset. Since both emotions are negative and unhealthy, if we cast them aside, we can learn from each other because, in reality, any level of disability that keeps each of us as individuals from doing something we really love is equally traumatic to all of us!
A poignant example was published in the September 19, 1936 issue of The Saturday Evening Post about a young boy named "Larry". The title of the article was "My Son—Handicapped?" The following is a passage from a conversation Larry had with his mother regarding his attempts to understand why he had polio:
"Why did this happen to me? Why to me instead of some other boy? To Joe? Or to Tom? What did I do? Then, Mother, I got an idea. I said to myself that this had been done to me rather than to some other boy, because I was better able to overcome the handicap than some other boy. That made me feel pretty proud, in a way".
That boy named "Larry" was in fact, Dr. Thomas Gucker 111. During our visit in his office back in July of 1984, he told me of an article he thought I would enjoy reading. Before his death in 1986, he had revealed publicly that the story about Larry was in fact written by his mother about him. He had such a long and difficult recovery, requiring several surgeries to reach the level of recovery he would enjoy from his medical school days right up until his death. But he didn't want people to feel any pity for what he had gone through. For many years in speaking engagements all over the world, he would often cite the case study of Larry when the topic was Polio. Reading "Larry's" words in the article had as much impact on my thinking about my own situation as an adult in l984 as it did on him (who was far more disabled than I!) when he actually said those words to his mother years ago as a child. I'd like to think his words speak for all of us in the post-polio population.
END OF ARTICLE
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A BRIEF UPDATE BY AUTHOR---APRIL, 1999
In the years since writing my article I have gained stamina and muscle strength going significantly beyond what I had summarized at that time. I attribute my steady progress during this time to a considerable number of physical therapy treatments in the early 1990's and training with emphasis on deep breathing and slow muscle stretching as a form of conditioning. Finding and treating areas of muscle tightness starting in 1990 was equally as important to making improvement as isolating the areas of muscle weakness was back in 1984. Also, focusing on exercises geared to individual tolerance and avoiding any aggressive over-treatment of muscles. If it were not for an article which appeared in the Polio Network News in the Fall of 1990, Vol.6, No. 4, by Dr. Thomas P. Anderson entitled "Prescription for Pain" I would have not have realized how important evaluation for muscle tightness in post polio can be. At the time Dr. Anderson was at the Spaulding Rehabilitation Hospital in Boston. In part he said: "there are many people who feel that tightness plays a greater role in producing deformities after polio than weakness … many people, including a lot of physicians, tend to overlook this. There is something that can be done about tightness and it is important not to forget that"
In my own personal experience Dr. Anderson's opinions were born out because I came to realize that knowledge about muscles weakness solved only half the puzzle. I found out in therapy that all of my weak muscles had opposing tight muscles which we were able to work on with great success. I did not have therapists who had a lot of experience working with polio patients so I read as much as I could about what was considered appropriate (including Dr. Anderson's article, for instance) and gave that information to the therapists so we could work out the most beneficial form of treatment together. Therapists tend to take a special interest in your case and spend more time with you if you show real motivation and commitment to your therapy program.
Also, after establishing a ¼" leg length discrepancy, I began using a heel lift all the time with excellent results. (a ¼" difference I found out was a lot more significant than I realized) My rest periods over time have become fewer and shorter and the need for applying heat and/or cold packs to sore and inflamed muscles is far less frequent. I see a massage therapist at the first sign of any stubborn muscle spasms developing and I am now able to ride the stationary bike 15-20 minutes a day instead of 5-10 min. a day. Still without much resistance, but the important thing is that what I do is done consistently. I now know the warning signs to tell me that I am starting to overdo and prevent extreme fatigue and/or incapacitating muscle pain. There are still many days I wish that my stamina levels were much higher than they are. I also wish it was not so important to pace myself as I now do in order to feel good, but those thoughts are offset by how grateful I am to have crossed paths with the wonderful medical specialists I wrote about in my article without whom I am certain I would not have had the motivation, knowledge and encouragement to get to stabilize and progress as I have. If my article reprinted today can help a few more people to get their doctors and/or families to take them seriously and have their symptoms taken seriously and properly evaluated, I will feel that I have given something of value back to the polio community.
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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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