My name is Henry Holland. I am a retired (on disability due to PPS) physician-psychiatrist. I have learned a lot from reading the postings to the Post-Polio Mailing Lists. I have noticed considerable questioning about medical matters in regard to PPS, various pros. and cons. of medications, and a variety of alternative and non-traditional treatments for PPS which may help some but not others. As a physician, I have observed a fair amount of doctor bashing, much of which may be justified. I have decided to begin posting to possibly be of some help to other PPSers and hopefully to provide some medical balance. I will begin by telling you my abbreviated polio history. I had polio at the age of eleven in 1950 in Richmond, Virginia, where I still reside. I had a severe paralytic case involving motor function damage from the neck down, the right side more severe than the left. After a three month hospitalization and a year of intensive exercise and hot bath treatments at home, I recovered enough function to only require a long leg locking brace on my right leg. During my college and medical school years, I could climb flights of steps, one at a time without a railing and alternating with both legs with a railing. I could walk an 18 hole golf course and ride a bicycle. I could pick myself off the ground when I fell. Towards the end of medical school, my main interests were internal medicine and psychiatry because I enjoyed patient contact. My interest in a medical career was a direct result of my polio experience. I should mention that during my adolescent growing years, I developed scoliosis of the spine with the curvature to the right, my weaker side.
During my rotating internship, I contracted a severe case of hospital resistant staph pneumonia, was trached, and almost died. I did recover but my lungs were never the same after that. I decided to do my residency in psychiatry because this speciality was mostly mental, could be practiced sitting down, and involved patient contact. However, I continued my interest in internal medicine, attended medical conferences, read medical and psychiatric journals as well as being on the clinical faculty of the Medical College of Virginia for 27 years. During my residency, I experienced repeated episodes of respiratory failure requiring intubation (just as in 'ER' every week) because my arterial C02 would increase during sleep due to exhausted respiratory muscles. In 1970, I agreed to a permanent tracheostomy, managed to get a cumbersome Bennett MA-I ventilator at home and my life almost miraculously turned round. I engaged in an active practice for 20 years until I experienced the first signs of PPS. During those 20 years, like many of you, I was a workaholic, had 12-14 hour days, was a dept. chairman, served on executive committees and taught med students and supervised residents. I loved my work. My wife and I had two children before my permanent trach was done and we had another daughter in 1979. If she had been a boy, we might have named her Bennett because that ventilator had extended my life. In 1990 I began to experience unexplained fatigue. I had numerous tests with no new findings. A lady at my church had heard about PPS and told me about a support group that met in Richmond. I went to my first meeting in 1991 and the first meeting was an amazing insight and I discovered an explanation for my problem when I heard the experiences of the other members. I educated my three doctors and they somewhat reluctantly agreed that my fatigue was probably somehow related to PPS. I cut back my hours, bought a scooter and van with a hoist to carry the scooter, my symptoms of fatigue remitted, and I resumed my workaholic practice for another five years. This past summer, the fatigue returned with intensity and was debilitating. I was hospitalized, had $8,000 worth of tests in two days and nothing new was found. My doctors (the same ones as before) now believed that I had post-polio fatigue. Dr. Richard Bruno's excellent article on the pathophysiology of central fatigue in PPS was most helpful to these doctors. I have retired on disability and was fairly quickly approved for SSDI. At the worst, the fatigue was so severe that I could not stand, only sit for a few minutes, yet my legs would hold me up and did not feel much weaker motorwise.
I just simply felt like I did not have the energy to walk ten feet. Tom Walter in California has been of immense help to me when I went on-line. The polio chat group on aol, the list services, and my own local support group have shown me that I am not alone, and that there are numerous polio warriors out there.
I still have my brain and can communicate. Yes, I do have some word finding problems at times. At lot of daily rest has restored some energy to where I can leave the house for a few hours depending on the temperature outside. I am convinced that the original polio infection involved areas of the brain (particularly the Reticular Activating System) in the spinal and bulbar-spinal types that probably went undetected unless the patient died and evidence was found at autopsy. Now this area and probably other areas have worn out, contributing to central fatigue. The theories on motor neuron fatigue and related muscle or joint pain make sense and are more easily accepted in medical centres as being related to PPS. I find that the central fatigue when it is debilitating causes sleep disturbance, a feeling of being constantly tired even when one wakes up and tends to become more severe in the late afternoon. Everyone with PPS has tried to find what works best for them, and there is much variety. I remind myself that the polio virus was very specific in where it did its damage, but no two cases of acute polio were exactly alike. Consequently, although there are many similarities in the symptoms of PPS (that is why it is called a 'syndrome'), the manifestations of PPS are never EXACTLY the same in any two of us. As a result, the medical profession is puzzled as to what to do even when medical people are knowledgeable about PPS. Do you exercise or not? Do you prescribe pain meds and contribute to someone attempting to resume activity and further weaken motor function? Do you prescribe antidepressants since some surveys indicate 1/4 to 1/3rd of PPSers meet the diagnostic criteria for Major Depression? But what dose do you prescribe since most PPSers respond to lower doses if they respond, and it seem most PPSers are more sensitive to side effects than just depressed patients. Is the PPS itself causing a depletion of serotonin and catacholamines leading to biological depression or is the depression simply secondary to the sense of loss of purpose and usefulness that many PPSers experience. I think many of us have used denial and are prone to be so called type A personalities. A better term might be driven obsessive-compulsive overachievers who find it difficult to change and deal with anger. I think PPS has stirred up both our repressed anger (from the past) and allowed our conscious anger about PPS to be felt. I have noticed as a group that most of us are perceptive, but also sensitive to the reactions of others and even project our anger onto others. This usually indicates that the individual is angry with himself or herself. But we also seem to be equally caring, apologetic, and forgiving. We are all in this together. If not for PPS, we would have had no reason to find each other. If there is a blessing in all of this for us, it is that we have rediscovered ourselves and each other through a variety of interpersonal methods. Until 1991, I knew only one other person who showed a residual of polio. Now, I know hundreds, and the potential is thousands. During my professional career, I treated the usual mental disorders that most psychiatrists treat, but I maintained an interest in the emotional problems or defenses of people with chronic medical illnesses (diabetes, colitis, arthritis, chronic pulmonary disease, cerebral palsy, chronic fatigue syndrome, fibromyalgia, etc.) I also tried to stay abreast of psychopharmocology and the interaction of drugs. I have learned a lot about ventilators since I have used one for 27 years. I found that many times the least treatment is the best, especially with the elderly and chronic disorders, but I also believe in relieving pain. I can confess that doctors are fearful of state boards of medicine and their power, fearful of losing their federal narcotic license, and are under scrutiny from review by private insurance companies, Medicare, Medicaide and HMO's (Health Money Organizations --- only joking), who will punish you if you happen to have a 'sick' practice, meaning a lot of patients with chronic disorders.
We often do order unnecessary tests in defensive fear of malpractice claims. It used to be that if something had happened, you could deal with it when you knew that you had done nothing wrong, but now the doctor gets a letter in the mail for his records from a lawyer or a subpoena for records from the court over something that may have happened over a year before. I can tell you that such an event can distract your attention and attitude towards our many grateful patients.
I have said enough, I would like to respond to inquiries about PPS, medications, various treatments, and yes, I am interested in alternative treatments and have tried a few myself. Ironically, the Salk Vaccine put an abrupt end to all the research on the natural course of polio. Now, we, hopefully, the last polio generation in the USA, will perhaps renew some research and provide answers about the natural course of polio, and hopefully, in time to be of some help to ourselves. I graduated from med school in 1966, and my class did get a one hour lecture on polio, now it is mentioned in much the same way the bubonic plague or leprosy is mentioned. You need to know about it to answer quiz questions, but you do not expect ever to see a case of it.
What I have said in regard to medical and psyche dynamic issues is only my opinion, just that. I have had vast experience as a doctor and a patient. I do not claim to be an expert, I am one of you, but I am willing to be of any help I can.
Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com
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