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Post-Polio Health (ISSN 1066-5331)

Vol. 18, No. 2, Spring 2002
Read selected articles from this issue ...

Polio Myths and Half-Truths
Julie K. Silver, MD, Medical Director, International Rehabilitation Center for Polio, Spaulding Rehabilitation Hospital, Framingham, Massachusetts

Editor's Comments

Peru's Polio Survivors
Marilú Montero Graña, San Isidro, Lima

Stanford's Program: An Opportunity for Survivors

For Your Information: Medication Assistance Programs

Letters to the Editor: Healing Polio Memories; Assistive Equipment; Shoes; Wheelchairs; Exercise


Editor's Comments ...

Joan L. Headley, Executive Director, Post-Polio Health International (editor@post-polio.org) 

I am told that sometimes my comments hint at my frustration. This time I am not hinting. I am frustrated! For the last 15 years, my job has been to educate polio survivors and health professionals about the late effects of polio – to alert them about the potential problems and to assist in finding solutions. I never anticipated that I would spend so much time clarifying misinformation that results from simplifications or overgeneralizations. 

A daughter of a polio survivor called last week and was distressed because her mother had refused surgery that she needed (a 2% chance of living without it) "because polio survivors should not have anesthesia!" While we encourage polio survivors to discuss anesthesia issues with their physicians, we never have stated that they cannot tolerate it. We receive calls and questions from polio survivors and health professionals (albeit in a skeptical tone) asking for the "list of medications that all polio survivors should avoid" and for the information that "supports that all polio survivors should not exercise." 

Needless to say, I was pleased when Julie Silver, MD, sent an article about three ideas that are "polio myths," or at best, "half-truths." I have included several "Letters to the Editor" that demonstrate the variety of issues facing polio survivors and their proactive methods of addressing them. We both hope that we can prevent some unnecessary hysteria and guilt. 

We must continue to share information and ideas, but also question the soundness of post-polio information, particularly as it relates to each of us as individuals. I challenge you to do your "homework" and determine your own path to optimum health and independence, in conjunction with a caring physician who thinks critically. 

Perhaps, you, too, are frustrated by awareness efforts that have gone awry or have resulted in counterproductive responses. I invite you to send your concerns to me.

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 costs.

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 a 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 lifestyle 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:

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:

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). Philadelphia, PA: J.B. Lippincott Company.

3. Nollet, F., Beelen, A., Prins, M.H., et al. (1999). Disability and functional assessment in former polio patients with and without post-polio syndrome. Archives of Physical Medicine & Rehabilitation 80, 136-143.

4. Halstead, L.S., & Rossi, C.D. (1985). New problems in old polio patients: Result of survey of 539 polio survivors. Orthopedics 8, 845-850.

5. Silver, J.K., & Aiello, D.D. (2000). Abstract: Risk of falls in survivors of poliomyelitis. Archives of Physical Medicine & Rehabilitation 81, 1272.

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