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The Ten Commandments of PPS Dr. Richard Bruno is Chairperson of the International Post-Polio Task Force and writes extensively on post polio syndrome. This is a summary of an article written several years ago, and recently sent out again. 1. Listen to Yourself Listen to your own bodies; observe how your feel, both physically and emotionally; keep track of activities and related symptoms. 2. Activity is Not Exercise The more you overuse your muscles, the more strength you may lose. Muscles affected by polio lost at least 60% of their motor neurons, and limbs you thought were not affected lost as much as 40%. Conserve to preserve. Stretching may help pain, and non-fatiguing exercise for specific muscles can help prevent further loss of strength. Bracing may also help. 3. Brake, Dont Break Dr. Brunos research showed that taking two 15-minute rest breaks per day was effective treatment for PPS symptoms. Another study showed that by pacing activities, less fatigue results. 4. A Crutch is Not a Crutch Adding a brace is not a sign of failure or of giving up. You use three times less energy using a short leg brace on a weakened leg. Overworked muscles and joints hurt and weaken motor neurons, but adding assistive devices can decrease symptoms. You dont drive your car until its out of gas, so why drive your body until its out of neurons? 5. Just Say No to Drugs, unless Many studies have not found that any drug effectively treats PPS. Yet, at least 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 Many have disturbed sleep due to pain, anxiety or sleep disorders, such as sleep apnea or muscles twitching. A sleep study may be beneficial if you awaken at night with your heart pounding or choking, or awaken in the morning with a headache and not feeling rested. 7. Some Polio Surivors Like It Hot According to Dr. Bruno, some have cold and purple-looking feet because the nerves that control the size of blood vessels were destroyed by the poliovirus. He found that polio survivors nerves and muscles function as if its 20 degrees colder than the actual temperature. When going outside, dress in layers that hold in your body heat. 8. Breakfast is the Most Important Meal of the Day Recent studies show that the less protein polio survivors have at breakfast, the more severe their fatigue and muscle weakness during the day. He suggests 16 grams of low-fat protein for breakfast and small snacks throughout the day. 9. Do Unto Yourself as You Have Been Doing For Others Polio survivors often became super-achievers, doing everything for everyone except themselves. Many dont ask for help. Accepting assistance is not the same as being dependent. Accepting assistance can keep you independent. 10. Make Doctors Cooperate Before They Operate According to Dr. Bruno, polio survivors are easily anesthetized because the part of the brain that keeps them awake was damaged by the poliovirus. They stay anesthetized longer and can have breathing trouble. Even nerve blocks using local anesthetics can cause problems. He suggests that we have lung function tests before having a general anesthetic. Provide a complete polio history and any new problems to your surgeon and anesthesiologist before surgery. He recommends that polio survivors not undertake same-day surgery or outpatient tests requiring anesthesia, but rather plan to stay overnight at the hospital for observation. (For a copy of Preventing Surgical and Anesthesia Complications go to www.postpolioinfo.com/PostPolio/index.htm). |
