Authored by BlueAngel on
Saturday, April 17, 2004
(This article is reprinted from IPN's Polio Network News (now Post-Polio Health) Spring 2002 Vol. 18 No. 2. Any further reproduction must have permisssions of the copywrite holder. Post -Polio Health International; 4207 Lindell 4207 #110; Saint Louis, Missouri 83106-2915. www.post-polio.org / info@post-polio.org.)
Polio Myths and Half-Truths
Julie K. Silver, MD, Medical Director, International Rehabilitation Center for Polio, Spaulding Rehabilitation Hospital, Framingham, Massachusetts
Julie K. Silver, MD, is the medical director of the International Rehabilitation Center for Polio at Spaulding Rehabilitation Hospital in Massachusetts (www.polioclinic.org). She is also an Assistant Professor at Harvard Medical School and has published several books including the book Post-Polio Syndrome: A Guide for Polio Survivors and Their Families (Yale University Press). Dr. Silver’s mother, uncle, and grandfather all contracted polio in the summer of 1946. During her medical training, she worked with Lauro Halstead, MD, and they have worked together on polio-related projects throughout her career.
Myth #1: Some medications are bad for polio survivors and should be avoided at all cost.
Many polio survivors have read that some medication classes are bad for them – the most common I am asked about is probably the “statins” (e.g., fluvastatin, simvastatin, etc.) These are medications that end in statin and are used to lower cholesterol levels. The fear is that these drugs will cause muscle pain or weakness (a known side effect) and compound the weakness that a polio survivor is already experiencing.
Heart disease is the leading cause of death in men and women as they age. Stroke is a leading cause of further disability. Both conditions are directly linked with high cholesterol levels and “statin” drugs that reduce cholesterol are critical for many people in order to lower their risk of stroke and heart attack.
But, why give a drug to a polio survivor that may cause him or her to become weaker? The answer is because it may save a life.
It is important to understand what the actual risk may be of developing musculoskeletal problems if you take a particular medication. For example, the drug Zocor (simvastatin) underwent fairly vigorous testing prior to it being approved by the Federal Drug Administration (FDA). More than 2400 people were tested on the medication.1 No one in the study knew if they were actually taking the drug (it was blinded), and the results showed that more people complained of muscular side effects when taking a sugar pill (1.3%) than when taking the actual medication (1.2%). The point here is that even if you do take simvastatin, there is nearly a 99% chance that you won’t develop muscular side effects.
So, my advice always goes like this: talk to your doctor – the one who prescribed the medication in the first place. Ask him or her whether it would be okay for you to stop the medication for a period of time to see whether it is indeed causing you to feel weaker or more pain or whatever you are concerned about. A “drug holiday” is a good way to see whether you are actually experiencing side effects from medication. When you go off the medication, pay attention to whether you feel any different. If you do not, that medication is probably fine for you. Keep in mind that every drug has a huge list of potential side effects. This does not mean that you will experience them – it just means that in studies that were done on the drug, some people had these side effects.
At the same time, ask your doctor whether there are other alternatives that you can try – including medications and life-style changes. For example, exercise, smoking cessation, and weight loss have all been associated with reducing cholesterol levels. Although I used the example of the statin class of medications, this advice applies to any medication that concerns you.
Myth #2: Polio survivors should rest, rest, rest!
This is another myth that has some truth to it, but taken to an extreme is dangerous. All bodies become extremely deconditioned without the constant use of the muscles. Even polio-weakened muscles can become weaker from disuse. Not using muscles results in weakness, and diminished endurance and cardiac fitness. If you are at complete bedrest, your muscles will lose 10-15% of their strength per week.2 If you stay in bed for a month, you will have lost about half your strength. Muscles need to be contracted regularly in order for them to maintain their size and strength.
On the other hand, it is important to note that the opposite of disuse – overuse – can also cause further weakness in polio survivors. So, the trick is to balance your daily activities with rest and also do an appropriate exercise program.
This sounds easier than it is, and I always recommend that people talk to healthcare professionals who are experienced in prescribing exercise programs for polio survivors. But some simple suggestions are as follows:
Nearly everyone, including polio survivors, should exercise regularly.
Exercise is not what you do in your daily activities, but rather is a set program that has a time limit and a certain number of exercises with a particular amount of weight or resistance that is used.
Doing the same exercises over and over may lead to further weakness. Instead, exercises should be alternated regularly so all of the muscle groups are used and no one muscle group is overused. The concept of cross-training that is widely accepted in sports medicine is what we promote at our center.
Include some strengthening, range-of-motion, and aerobic exercises to be sure you maintain optimal fitness.
If you experience pain or undue fatigue, check with your doctor. This generally means that what you are doing needs to be modified or even stopped altogether.
Myth #3: Swimming is good for you
If you love to swim, do it regularly, and have easy and safe access to a pool, then swimming probably is good for you and you should continue to do it. However, if you do not swim for exercise and you feel guilty about it, then let me relieve you of your guilt – because swimming can be dangerous for your health.
Famous polio survivor, Franklin Delano Roosevelt, loved the buoyancy of water and the freedom it gave him to move his paralyzed body. The fact that much of his swimming was done in the beautiful Warm Springs, Georgia, only added to the benefits he received from this exercise. But swimming is not for everyone and there are some good reasons why you might not want to swim.
First, getting ready to go swimming is a lot of work. For most people swimming involves many or all of the following steps:
Locate your bathing suit and towel.
Go from your house to your car.
Drive to the pool.
Go from the parking lot to the locker room.
Change into your bathing suit.
Go from the locker room to the pool.
Swim.
Go from the pool to the locker room.
Change out of your bathing suit.
Go from the locker room to your car.
Drive your car home.
Go from your car to your house.
Hang your bathing suit and towel up to dry.
Of the 13 steps I listed, only one of them involves the “exercise” of swimming. But, in order to get that exercise, you must do at least 12 other things that may just serve to wear you out. So, although I am a huge advocate of exercise that promotes cardiovascular fitness for polio survivors (keep in mind that post-polio syndrome is disabling, but cardiovascular disease kills more middle aged and older people than any other condition), swimming is a lot of work.
Second, you may be at risk to fall as you do these 13 steps. In one study, 46% of polio survivors noted that walking outdoors was difficult.3 In another study, 82% of polio survivors reported increasing difficulty with walking.4 Yet another study revealed that 64% of survivors reported falling at least once within the previous year and of this same group, 35% reported they had a history of at least one fracture due to a fall.5 Given these statistics, the number of steps it requires to go swimming (often both literally and figuratively) and the likelihood that there may be some slippery surfaces in the locker room or around the pool, it is easy to see how someone might fall and sustain a serious injury while going swimming.
I think it is really important to not discourage anyone from exercising in a safe manner and swimming can be a great exercise for polio survivors. But, it is not a great exercise for ALL polio survivors. If you love to swim and you can do it safely, then definitely continue. But, if you find yourself overly fatigued after swimming, or if you think you are at risk to fall and have a serious injury then consider other exercise options.
References:
1. Physicians’ Desk Reference. (2002). (pp. 2222-2223). Montvale, NJ: Medical Economics Company, Inc.
2. Rehabilitation Medicine Principles and Practice. (1993). DeLisa, J., & Gans, B. (Eds.) (p. 689).
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Authored by BlueAngel on
Saturday, April 17, 2004
( The article is reprinted from Post-Polio Health, Spring 2003, Vol. 19 No.2 with permission of Post-Polio Health International. Any further reproducation must have permissions of the copywrite holder: Post -Polio Health International, 4207 Lindell Blvd. #110; Saint Louis, Missouri 83106-2915; {www.post-polio.org} E-mail: info@post-polio.org)
Advising all polio survivors not to exercise is as irresponsible as advising all polio survivors to exercise.
Current evidence suggests that exercises are often beneficial for many polio survivors provided that the exercise program is designed for the individual following a thorough assessment and is supervised initially by knowledgeable health professionals. Polio survivors and their health professionals who are knowledgeable about the complete health status of the individual survivor should make the ultimate decision on the advisability of exercise and the protocol of the exercise program.
Clinical research studies support exercise programs that are prescribed and supervised by a professional for many polio survivors, including those with the symptoms of post-polio syndrome.* (See References.)
Acute paralytic polio can result in permanent muscular weakness when the viral infection leads to death of anterior horn cells (AHCs) in the spinal cord. Recovery from paralysis is thought to be due to the re-sprouting of nerve endings to orphaned muscle fibers creating enlarged motor units. Recovery is also attributed to exercise that facilitates the enlargement of innervated muscle fibers. For example, some polio survivors regained the use of their arms and have walked for years with crutches. Others regained the ability to walk without the aid of braces, crutches, etc., and have continued to walk for decades.
The increased muscle weakness recognized in those with post-polio syndrome is believed to occur from the degeneration of the sprouts of the enlarged motor units. The premature death of some of the AHCs affected by the poliovirus is speculated to also cause new weakness, and some new weakness is caused by disuse, or a decline in activity or exercise.
There is agreement that repetitive overuse can cause damage to joints and muscles, but can repeated overuse and excessive physical activity accelerate nerve degeneration or nerve death? This is the crux of the physical activity/exercise debate.
Physical activity is movement occurring during daily activities. Exercise is defined as planned, structured, and repetitive body movement.
Therapeutic exercise is conducted for a health benefit, generally to reduce pain, to increase strength, to increase endurance, and/or to increase the capacity for physical activity.
Polio survivors who over-exercise their muscles experience excessive fatigue that is best understood as depletion of the supply of muscle energy. But, some polio survivors’ weakness can be explained by the lack of exercise and physical activity that clearly leads to muscle fiber wasting and cardiovascular deconditioning.
The research supports the fact that many survivors can enhance their optimal health, their range of motion, and their capacity for activity by embarking on a judicious exercise program that is distinct from the typical day-to-day physical activities. These same polio survivors need not fear “killing off” nerve cells, but do need to acknowledge that the deterioration and possible death of some nerve cells may be a part of normal post-polio aging.
Exercise programs should be designed and supervised by physicians, physical therapists, and/or other health care professionals who are familiar with the unique pathophysiology of post-polio syndrome and the risks of excessive exercise. Professionals typically create a custom-tailored individualized exercise program that is supervised for two-four months.During this period, they will monitor an individual’s pain, fatigue, and weakness and make adjustments to the protocol, as needed, to determine an exercise program that a polio survivor can follow independent of a professional.
When designing a program, these general principles are followed to achieve specific goals and/or maintenance levels.
The intensity of the exercise is low to moderate.
The progression of the exercise is slow, particularly in muscles that have not been exercised for a period of time and/or have obvious chronic weakness from acute poliomyelitis.
Pacing is incorporated into the detailed program.
The plan should include a rotation of exercise types, such as stretching, general (aerobic) conditioning, strengthening, endurance, or joint range of motion exercises.
Polio survivors who experience marked pain or fatigue following any exercise should hold that exercise until contacting their health professional. Researchers and clinicians cannot make a more definite statement until additional studies on the long-term effects of exercise and the effects of exercise on function and quality of life are undertaken.
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*Criteria for diagnosis of post-polio syndrome
Prior paralytic poliomyelitis with evidence of motor neuron loss, as confirmed by history of the acute paralytic illness, signs of residual weakness and atrophy of muscles on neurologic examination, and signs of denervation on electromyography (EMG).
A period of partial or complete functional recovery after acute paralytic poliomyelitis, followed by an interval (usually 15 years or more) of stable neurologic function.
Gradual or sudden onset of progressive and persistent new muscle weakness or abnormal muscle fatigability (decreased endurance), with or without generalized fatigue, muscle atrophy, or muscle and joint pain. (Sudden onset may follow a period of inactivity, or trauma or surgery.) Less commonly, symptoms attributed to post-polio syndrome include new problems with breathing or swallowing.
Symptoms persist for at least a year.
Exclusion of other neurologic, medical, and orthopedic problems as causes of symptoms.
Source: Post-Polio Syndrome: Identifying Best Practices in Diagnosis & Care. March of Dimes, 2001.
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References
Agre, J., Grimby, G., Rodriquez, A., Einarsson, G., Swiggum, E., & Franke, T. (1995). A comparison of symptoms between Swedish and American post-polio individuals and assessment of lower-limb strength – a four-year cohort study. Scandinavian Journal of Rehabilitation Medicine, 27, 183-192.
Agre, J., Rodriquez, A., & Franke, T. (1997). Strength, endurance, and work capacity after muscle strengthening exercise in postpolio subjects. Archives of Physical Medicine & Rehabilitation, 78, 681-685.
Agre, J., Rodriquez, A., & Franke, T. (1998). Subjective recovery time after exhausting muscular activity in postpolio and control subjects. American Journal of Physical Medicine & Rehabilitation, 77, 140-144.
Agre, J., Rodriquez, A., Franke, T., Swiggum, E., Harmon, R., & Curt, J. (1996). Low-intensity, alternate-day exercise improves muscle performance without apparent adverse affect in postpolio patients. American Journal of Physical Medicine & Rehabilitation, 75, 50-58.
Agre, J.C., Rodriquez, A.A. (1997). Muscular function in late polio and the role of exercise in post-polio patients. Neurorehabilitation, 8, 107-118.
Ernstoff, B., Wetterqvist, H., Kvist, H., & Grimby, G. (1996). Endurance training effect on individuals with postpoliomyelitis. Archives of Physical Medicine & Rehabilitation, 77, 843-848.
Grimby, G., Stalberg, E., Sandberg, A., Sunnerhagen, KS. (1998). An 8-year longitudinal study of muscle strength, muscle fiber size, and dynamic electromyogram in individuals with late polio. Muscle & Nerve, 21, 1428-1437.
Jones, D.R., et al. (1989). Cardiorespiratory responses to aerobic training by patients with post-poliomyelitis sequelae. Journal of the American Medical Association, 261(22), 3255-3258.
Kriz, J.L., Jones, D.R., Speier, J.L., Canine, J.K., Owen, R.R., Serfass, R.C. (1992). Cardiorespiratory responses to upper extremity aerobic training by post-polio subjects. Archives of Physical Medicine & Rehabilitation, 73, 49-54.
Prins, J.H., Hartung, H., Merritt, D.J., Blancq, R.J., Goebert, D.A., (1994). Effect of aquatic exercise training in persons with poliomyelitis disability. Sports Medicine, Training and Rehabilitation, 5, 29-39.
Spector, S.A., et al. (1996). “Strength gains without muscle injury after strength training in patients with postpolio muscular atrophy. Muscle and Nerve, 19, 1282-1290.
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Medical Advisory Committee
Martin B. Wice, MD, Chair, St. John's Mercy Rehabilitation Center, Saint Louis, Missouri
Selma H. Calmes, MD, Anesthesiology, Olive View/UCLA Medical Center, Los Angeles, California
Marinos C. Dalakas, MD, National Institute of Neurological Disorders & Stroke (NINDS), Bethesda, Maryland
Burk Jubelt, MD, Neurology, SUNY Health Science Center, Syracuse, New York
Julie G. Madorsky, MD, Clinical Professor of Rehabilitation Medicine, Western University of Health Services, University of California-Irvine, Encino, California
Frederick M. Maynard, MD, U.P. Rehabilitation Medicine Assoc., PC, Marquette, Michigan
E.A. (Tony) Oppenheimer, MD, FACP, FCCP, Pulmonary Medicine (retired), Los Angeles, California
Oscar Schwartz, MD, FCCP, FAASM, Advantage Pulmonary, Saint Louis, Missouri
Mark K. Taylor, MLS, CPO, Director, Clinical and Technical Services, Orthotics and Prosthetics Center, University of Michigan, Ann Arbor, Michigan
Daria A. Trojan, MD, Assistant Professor, Physical Medicine and Rehabilitation, Montreal Neurological Institute and Hospital, Montreal, Quebec, Canada
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Endorsers of ‘A statement about exercise for survivors of polio’
Developed by the Medical Advisory Committee of Post-Polio Health International
Ulrich Alsentzer, MD, Greenville Rehabilitation Medicine Associates, Greenville, North Carolina
Patti Brown, MD, HealthSouth Rehabilitation Hospital of Reading, Reading, Pennsylvania
William L. Bockenek, MD, Charlotte Institute of Rehabilitation, Charlotte, North Carolina
K. Ming Chan, MD, FRCPC, Centre for Neuroscience, University of Alberta, Edmonton, Alberta, Canada
William DeMayo, MD, Conemaugh Health System, Johnstown, Pennsylvania
Marny Eulberg, MD, St. Anthony’s Family Medical Center West, Denver, Colorado
Stuart J. Glassman, MD, HealthSouth Rehabilitation Hospital, Concord, New Hampshire
Gunnar Grimby, MD, Sahlgrenska University Hospital, Göteborg, Sweden
Lauro S. Halstead, MD, National Rehabilitation Hospital, Washington, DC
Pesi H. Katrak, MBBS, MD, FRCP, Prince Henry Hospital, Little Bay, New South Wales, Australia
Mary Ann Keenan, MD, University of Pennsylvania, Philadelphia, Pennsylvania
Kerri Kolehma, MS, MD, Coastal Post-Polio Clinic, Charleston, South Carolina
Julian Lo, MD, FRCPC, FAAPMR, West Park Healthcare Centre, Toronto, Ontario, Canada
Burton W. Marsh, MD, Ocala, Florida
Frans Nollet, MD, PhD, Academic Medical Center, Amsterdam, Netherlands
Richard R. Owen, MD, Eden Prairie, Minnesota
Paul E. Peach, MD, Palmyra Post-Polio Clinic, Albany, Georgia
Susan L. Perlman, MD, University of California Los Angeles, Los Angeles, California
Raymond P. Roos, MD, University of Chicago Medical Center, Chicago, Illinois
Alexander Shapira, MD, Assaf Harofhe Hospital/Tzrifin, Tzrifin, Israel
Andrew Sherman, MD, University of Miami School of Medicine, Miami, Florida
Julie K. Silver, MD, Spaulding-Framingham Outpatient Center, Framingham, Massachusetts
Jennine Speier, MS, MD, Sister Kenny Rehabilitation Associates, Minneapolis, Minnesota
Walter C. Stolov, MD, University of Washington Medical Center, Seattle, Washington
Katharina Stibrant Sunnerhagen, MD, PhD, Sahlgrenska University Hospital, Göteborg, Sweden
Carol Vandenakker, MD, University of California Davis Medical Center, Sacramento, California
William Waring, III, MD, Froedtert Memorial Lutheran Hospital, Milwaukee, Wisconsin
Jane Pendleton Wootton, MD, Sheltering Arms Rehabilitation Hospital, Richmond, Virginia
Stanley K. Yarnell, MD, Saint Mary's Medical Center, San Francisco, California
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Visit www.ncpad.org and review “To Reap the Rewards of Post-Polio Exercise” by Sunny Roller, MA, University of Michigan Health System, Ann Arbor, Michigan, and Frederick M. Maynard, MD, U.P. Rehabilitation Medicine Associates, PC, Marquette, Michigan.
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Spring 2003, Vol. 19, No. 2
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