Post-Polio Health (ISSN 1066-5331)
Vol. 16, No. 4, Fall 2000
Read selected articles from this issue ...
General Information Letter for Polio Survivors:
Why are "old polios" who were stable for years now losing function? What should they do about it? SPANISH
Jacquelin Perry, MD, DSc (Hon), Rancho Los Amigos Rehabilitation Center, Downey, California
Antidotes to Stress
Mary Westbrook, PhD; Nickie Lancaster, RN; Philippe Galask; LaVonne Schoneman; Carol Purington; Nancy A. Heiskell
Selected Post-Polio Bibliography
Joan L. Headley, Executive Director, PHI (formerly GINI)
Dr. Perry's article covers the basics and defines post-polio syndrome right up front. Definition continues to be a problem. The medical literature more narrowly defines post-polio syndrome; some lay literature equates post-polio syndrome and the late effects of polio. International Polio Network does not. When reading any information, including the articles cited in "Post-Polio Bibliography," it is always wise to first establish how the author defines post-polio syndrome.
Definition was briefly discussed at the recent March of Dimes/Warm Springs meeting (May 2000). The experts still need to reach a consensus. The information that was presented by the health professionals (listed in the last issue of Polio Network News) is now being edited. The Executive Steering Committee hopes to have the final product available by early 2001.
International Polio Network will begin updating the Post-Polio Directory-2001 in late December. Please watch for your entry via mail or e-mail, carefully check the information, and return it to us immediately. The "Post-Polio Clinics" will receive a survey to complete which will clarify their services for evaluating and managing the late effects of polio.
If you know of knowledgeable, caring health care providers who should be listed, please send their information to us. We will contact them.
Many of you participated in the "Mobility, Disabilities, Participation and Environment" study by the Program in Occupational Therapy at Washington University. David Gray, PhD, reports that the project received additional funding. A future issue of Polio Network News will include conclusions and insights from the research.
Several of you have asked about the benefits of human growth hormone (hGH). Human growth hormone is produced by the pituitary gland at the base of the brain and is responsible for our growth spurts as children. Its production tapers off as we age (beginning in our 30s). A few small studies have shown that hGH supplementation may increase muscle mass. A study published in 1995 by K.R. Shetty, et al., gave hGH to six individuals meeting the criteria for post-polio syndrome and measured their before and after muscle strength and endurance. The majority of the muscle function tests showed little or no improvement or change after three months of hGH treatment. The possibility of benefit from treatments longer than three months remains.
The Mayo Clinic Health Newsletter (June 2000) reminds us that there are side effects to this prescription drug taken by injection and that it is costly (a year's supply can be $10,000). If you have seen the full page advertisement in the newspaper reporting the benefits of hGH, read carefully because what is being sold is not hGH but "growth hormone releasing" nutrient, a specific combination of amino acids that is said to release our hGH from its "sequestered state." We will keep you posted on any research being done specifically for the survivors of polio.
Polio survivor and friend, Ellen Fay Peak died of cancer in August. Ellen helped me immensely with editing over the last four years. She and I were both ex-teachers, and we had a similar outlook on many aspects of life. The last time I spoke with Ellen, she was calling to tell me that she was now "taking medication for her medication." Her polio experience was much more complex than mine, and she freely shared her thoughts. I will miss her.
General Information Letter for Polio Survivors SPANISH
Why are "old polios" who were stable for years now losing function? What should they do about it?
Jacquelin Perry, MD, DSc (Hon), Rancho Los Amigos National Rehabilitation Center, Downey, California
Jacquelin Perry, MD, DSc (Hon), was certified by the American Board of Orthopedic Surgery - one of the first women to be certified -- in 1958. Immediately after her residency in orthopedic surgery, she was invited by Dr. Vernon Nichol (Chief of Surgical Services) to join his staff at Rancho Los Amigos in the Los Angeles area. She has been involved in the management of the problems of polio survivors since that time. She is Professor Emeritus Orthopaedics, University of Southern California.
The basic problem is that polio destroyed some of the nerve cells that activate the muscles. To the extent possible, the neurological system responded by having the remaining nerves adopt the muscle fibers that had lost their original nerve supply. This meant that nerve cells now had a demand much greater than normal. While this was an effective solution initially, the passage of time (30+ years, usually) has taught us that overuse can be destructive. As a result, these secondary nerves are wearing out with resulting muscle loss, i.e., post-polio syndrome.
Post-polio muscle strength is commonly over estimated as the usual test depends on manual resistance by the examiner. In addition, polio survivors mask their disability by clever use of their normal control and normal position sense to substitute for missing musculature. The post-polio muscle graded "normal" (5) averages 25% less than "true" normal (only 50% normal for the quadriceps). Similarly, the muscle graded "good" (4) is only 40% of normal strength. These strengths are adequate for a person to carry on customary activities in a typical manner, but at a demand that is 2-2-1/2 times the usual intensity; hence, the muscle nerves have been experiencing strain for years.
The apparent abrupt loss in function relates to two functions. One is the buffer zone present in all of our physiological systems which enables them to accept strain for a considerable time, but once the buffer limits are exceeded, the loss is very prominent. Secondly, activities such as walking or lifting objects present fixed mechanical demands. As long as the person's muscle strength exceeds that demand, he/she can continue to perform as usual but with earlier fatigue. When the strength goes below the essential limit, suddenly that function is lost.
The answer is redesigning your lifestyle to avoid those activities that cause muscle strain, cramping, persistent fatigue, and, consequently, weakening. This means to very carefully look at how you are using your arms, legs, and back, and to avoid those tasks that cause the symptoms of persistent fatigue, muscle soreness, and/or a sense of weakness after use. At times, this requires the employment of special devices to take the load off of the arms. If the changes are made early, strength can be recovered. It will not be sufficient to prepare the muscles for excessive strain again, but it does bring the muscles up to a more useful level. Other ways of reducing strain is by using self-care devices, walking aids, braces, and corrective surgery to lessen the stress.
Once the strain has been reduced, then cautious exercise may be of value. We have been using short duration (5 repetitions) or moderate intensity (50-70% of one's maximum capability). Let me caution you not to take on the exercises, however, until you have worked out a lifestyle that avoids the strain. Also, if the exercises cause any pain, persistent fatigue, or increased weakness, STOP! This means just the mechanics/activities of daily living (ADL) are sufficient exercise for your muscles.
Recent research on the course of muscle strength over time in persons over age 50 years showed a normal average decline of 1% per year, but for post-polio survivors the rate was 2% per year. The rate of change is so subtle that a four-year study was needed for a measurable change. Also, the weaker "polios" experienced greater functional loss. This latter fact appeared to indicate strength training by exercise would deter the process. However, retesting this group of polio survivors at eight years and adding muscle analysis told a different story. The muscle fibers were hypertrophied, twice normal size, not atrophic. The person with the greatest strength loss also had the greatest hypertrophy.* MRI recordings showed areas of muscle loss and fatty replacement. The source of the visible muscle atrophy is muscle fiber loss secondary to nerve fiber overuse failure. These findings confirm the need for a saving program rather than challenging exercise.
The advantage of having had polio rather than another disability is that it allowed one to resume a very active and profitable life for many years. Now it is necessary to recognize that excessive strain was being experienced and that lifestyles must be changed to accommodate this situation.
Be an "Intelligent Hypochondriac" – Listen to your body and adopt a program that avoids the strain.
* "Several histologic studies have shown that the myofibers of polio survivors can be twice the size of those found in other persons. A few studies have provided indirect evidence for a possible transformation of some of the surviving type II (fast-twitch fibers) to type I (slow-twitch fibers). The few studies performed have shown a preponderance of type I muscle fibers in very weak muscles that were constantly being used in daily activities. It has been postulated that a person would have to utilize all motor units in these very weak muscles to perform all daily activities and that, over time, the type II fibers are transformed to type I fibers."
SOURCE: Agre, J.C., Sliwa, J.A. (2000). Neuromuscular rehabilitation and electrodiagnosis. Archives of Physical Medicine & Rehabilitation 81(3), Suppl S27-31.