The Ten Commandments of PPS

June 1999

After 15 years of digging, archaeologists from The Post-Polio Institute have unearthed 10 definitive "commandments" for treating post-polio sequelae.

By Richard L. Bruno and Nancy M. Frick

1. Listen to Your Body

Polio survivors often turned themselves off from the neck down after they got polio. The first step in treating PPS is to listen to yourself: to what you feel, physically and emotionally, when you feel it and why. Our most powerful tool in treating PPS is the daily logs our patients keep that relate activities to their symptoms. Sometimes, however, you can listen too much: to salesmen who say some herb or supplement will "cure" PPS, to fellow survivors who warn that you will eventually have every possible PPS symptom, and to friends and family members--and the voices in your own head--saying you're getting lazy. Polio survivors need to listen to their own bodies, not to busybodies.

2. Work Smarter, Not Harder

Many polio survivors believe that if they walk around the block five times a day, spend an hour on the exercise bike and take extra trips up and down stairs, their muscle weakness will go away. The opposite is true: The more you overuse your muscles, the more strength you lose. Muscles affected by polio lost at least 60 percent of their motor neurons; even limbs you thought were not affected by polio lost about 40 percent. Most disturbing is that polio survivors with new muscle weakness lose on average seven percent of their motor neurons per year, while survivors with severe weakness can lose up to 50 percent per year! Forget about "use it or lose it." You need to "conserve it to preserve it." Stretching may help pain, and nonfatiguing exercise for specific muscles can prevent you from losing the strength you have after you get a brace. But polio survivors need to work smarter, not harder. Remember the Golden Rule for polio survivors: If anything causes fatigue, weakness or pain, don't do it. Or do lots less of it.

3. Go Slow and Steady

The follow-up study of our patients showed that taking two 15-minute rest breaks per day--that's doing absolutely nothing for 15 minutes--is the single most effective treatment for PPS symptoms. Another study showed that polio survivors who pace activity--that is, who work and then rest for an equal amount of time--can do 240 percent more work than if they push straight through. Our patients who take rest breaks, pace activities and conserve energy have up to 22 percent less pain, weakness and fatigue. But polio survivors who quit or refuse therapy have 21 percent more fatigue and 76 percent more weakness. For polio survivors, slow and steady wins the race.

4. Be Kind to Your Neurons

Using crutches or braces are not signs of failure or of "giving up." You use one third of the energy--and look better walking--using a short leg brace on a weakened leg. Muscles and joints hurt and nerves die after decades of doing too much work with too few motor neurons. So why not use a brace, cane, crutches--dare we say even a wheelchair or scooter--if they decrease your symptoms and make it possible to finally take that trip to Disney World? We know, you'll slow down and take care of yourself "when you're ready." And you'll use a wheelchair "when there's no other choice." Well, you don't drive your car until it's out of gas. Why drive your body until it's out of neurons?

5. Say No to Drugs, Unless ...

Five studies have failed to find any drug that treats PPS. And no studies show that herbal remedies or magnets reduce symptoms. Don't think that you can apply a magnet or pop a pill to make your PPS disappear. Pain, weakness and fatigue are not-so-subtle messages from your body telling you that damage is being done. Masking symptoms--with magnets or morphine--will not cure the damage. However, two studies have shown that polio survivors are twice as sensitive to pain as everyone else and usually need more pain medication for a longer time after surgery or an injury.

6. Sleep Right All Night

The majority of polio survivors have disturbed sleep due to pain, anxiety or sleep disorders such sleep apnea or twitching muscles. However, you may not be aware that you stop breathing or twitch. If you awaken at night with your heart pounding, anxiety, shortness of breath, choking or twitching, or if you awaken in the morning with a headache or not feeling rested, you need a sleep study. "Post-polio fatigue" may be due to a treatable sleep disorder.

7. Turn Up the Heat

Polio survivors have cold and purple "polio feet" because the nerves that control the size of blood vessels were killed by the poliovirus. Actually, your nerves and muscles function as if it's 20 degrees colder than the actual outside temperature! Cold is the second most commonly reported cause of muscle weakness and is the easiest to treat. Dress in layers and wear socks made of synthetic fabrics like breathable fiber polypropylene that hold in your body heat.

8. Eat Breakfast or Else

Mom was right. Many polio survivors eat a Type A diet: no breakfast, coffee for lunch and cold pizza for dinner. A recent study shows that the less protein polio survivors have at breakfast the more severe their fatigue and muscle weakness during the day. When our patients follow a "hypoglycemia diet" (16 grams of low-fat protein at breakfast and small, non-carbohydrate snacks throughout the day) they have a remarkable reduction in fatigue. Protein in the morning does stop your midday yawning.

9. Anesthetize with Care

Polio survivors are easily anesthetized because the part of the brain that keeps them awake was damaged by the poliovirus. They also stay anesthetized longer and can have breathing trouble during and after anesthesia. Even nerve blocks using local anesthetics can cause problems. You should have lung function tests before having a general anesthetic. Your complete polio history and any new problems with breathing, sleeping and swallowing should be brought to the attention of your surgeon or dentist--and especially your anesthesiologist--long before you go under the knife. You should never have same-day surgery or outpatient tests (like an endoscopy) that require an anesthetic.

10. Do Unto Yourself as You Have Been Doing for Others

Many polio survivors were verbally abused, slapped or even beaten by therapists or family members after they had polio to "motivate" them to get up and walk. So polio survivors took control, becoming Type A superachievers, doing everything for everyone except themselves. Many polio survivors do for others and don't ask for help because they are afraid of being abused again. Isn't it time you got something back for all you've done for others? Accepting assistance is what can keep you independent. Appearing "disabled" by not doing for others and asking for help may be frightening, but they are also the best ways to manage your PPS.

Richard L. Bruno is Director of The Post-Polio Institute at New Jersey's Englewood Hospital and Medical Center, and Chairperson of the International Post-Polio Task Force. Nancy M. Frick is Executive Director of Harvest Center in Hackensack, N.J. Articles describing the research mentioned above can be found in the online PPS Library: members.aol.com/harvestctr/pps/polio.html

For Friends and Family:

Another Golden Rule

See no evil, hear no evil and help only when asked.

Polio survivors have spent their lives trying to look and act "normal." Using a brace they discarded 30 years ago and reducing their superactive daily schedule is both frightening and difficult for them. Consequently, you need to be supportive of lifestyle changes and accept survivors' physical limitations and new assistive devices. Most important, you should be willing to do the physical tasks a polio survivor should not do, but only do them when the polio survivor asks. You need to know everything about PPS but say nothing; neither gentle reminders nor well-meant nagging will force survivors to use a new brace, sit while preparing dinner or rest between activities. If survivors take responsibility for taking care of themselves, and ask for help, they will slow down ... instead of just fight with you about your "nagging."

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