SAPP Saskatchewan Awareness of Post Polio Society Inc.



President's Message

I am sure that many of you are waiting to here more about "PPS 2000"? I regret to inform you that the Directors of S.A.P.P. feel the financial risk of a conference of this size is beyond our capability at this time. Southern Alberta Post Polio Support Society Inc. has been sent a letter as to the direction of our Board. An open avenue remains present for any future joint projects together.

There has been some discussion on a two day Annual Meeting in April with 2 or three prominent speakers.

On a more pleasant note Mary Frerichs, a polio survivor in Saskatoon, has been awarded the "Shelley Grunard Award" from The Voice of People with Disabilities. This award is presented to a disabled female that has retained control of her own destiny in life. I myself was very proud to receive the CCD Award through The Voice of People with Disabilities submission to the Council of Canadian with Disabilities for my work with the disabled community. Mary and I both extend to our peer's our sincere gratitude for the recognition. As some may not realize the "Voice is an advocacy Group whose members are individuals representing themselves they are not representing any other disabled group.

Saskatoon Special Interest Coop has been the recipient of an award from Saskatchewan Economic & Cooperative Development in recognition of jobs created through their loans to member entrepreneur's. SSIC has been loaning monies out to people with disabilities showing a true desire to create a dream in entrepreneurship. Certain information has to be met as forming and submitting a Business Plan. SSIC has produced workshops helping people perform the paper work required to become eligible in receiving their loan. The initial maximum amount able to loan was $5,000.00 per member, the total amount of monies available for loans was $50,000.00, we now have a total fund base of $100,000.00 and are able to make individual loans to members of $10,000.00 (see add this newsletter).

Ron Johnson, President


Cold Intolerance and "Polio Feet" as Post-Polio Sequelae

Polio survivors are extremely sensitive to changes in temperature. At merely cool temperatures, most polio survivors report that their feet have always been cold to the touch, their skin a purplish color. However, as polio survivors have aged, 50% report "intolerance to cold" and that their limbs have become more sensitive to pain as the temperature decreases. Cold was reported to cause muscle weakness in 62% of polio survivors, muscle pain in 60%, and fatigue in 39%. When polio survivors were cooled in the laboratory from 30 C to 20 C, motor nerves functioned as if they were at 10 C and polio survivors lost 75% of their hand muscle strength. But, although polio survivors are twice as sensitive to pain as those without polio, no increase in pain sensitivity was found at lower temperatures.

The reason polio survivors have such trouble with cold is that the parts of the central nervous system that should control body temperature were damaged by the poliovirus. In the brain the hypothalamus (the "automatic computer" that controls the inner bodily environment) was damaged by the poliovirus, including the body's "thermostat" and the brain area that tells your blood vessels to constrict. In the spinal cord, the nerves that carry the message from the brain that tells the capillaries in the skin to contract when it's cold were also killed by the poliovirus.

Thus, polio survivors are unable to stop warm blood from flowing to the surface of the skin as the outside temperature drops. This allows loss of heat from the blood near the surface of the skin and causes the limbs to cool. When the limbs cool, arteries carrying blood to the skin and veins that should carry blood out of the skin narrow passively as they get cold, trapping blue venous blood in the capillaries and causing the feet to look blue and to become even colder. The cold skin chills the motor nerves, causing them to conduct more slowly and to be less efficient in making muscles contract. The cold also chills tendons and ligaments (like putting a rubber band in the freezer) making movement of weak muscles more difficult. As polio survivors know, it takes hours under an electric blanket or a long, hot bath to warm cold legs and regain strength.

However, when polio survivors take a hot bath, blood vessels do exactly the opposite of what they do in the cold. Polio feet and legs become bright red as arteries and veins relax and blood rushes to the skin. Then, when polio survivors stand to get out of the tub, they can feel dizzy or even faint as blood pools in their legs and causes their blood pressure to drop The pooling of blood in the feet also explains why polio survivors' feet swell, swelling that increases as they get older. And polio survivors' easily losing body heat explains why they have an increase in symptoms, especially cold-induced muscle pain, as the seasons change.

Polio survivors need to dress as if it were 12 C colder than the outside temperature. They need to dress in layers and wear heat retaining socks or undergarments made of polypropylene (marketed as Gortex or Thinsulate) that should be put on immediately after showering when the skin is warm. Polio survivors need to remind doctors that EMGs or nerve conduction tests must be performed in a room that is at least 24C to prevent false abnormal readings and that a heated blanket is necessary in the recovery room after polio survivors have surgery.


Emotional Stress in Polio Survivors and Post-Polio Sequelae

Emotional stress is the second most frequent cause of PPS symptoms, causing fatigue in 61% of polio survivors, muscle pain in 51% and muscle weakness in 45%. Polio survivors report other symptoms of chronic stress, including trouble falling asleep because their "minds are racing" in 58%, frequent feelings of anxiety (49% ) and a frequency of ulcers that is 80% higher than in the general population.

There appear to be two sources of polio survivors' stress: having had polio and having PPS.

Stress and polio. Three North American surveys and two clinical studies of more than 2,200 polio survivors found 23% more "Type A" behavior - being hard-driving, time-conscious, pressured and overachieving - as compared to those without disabilities or those who have spina bifida, a physical disability apparent at birth. It should not be a surprise that polio survivors also have more years of education, work more hours of overtime and take fewer sick days than do non-disabled workers.

"Type A" behavior (TAB) seems to have developed in polio survivors as an attempt to prevent abuse. Polio survivors who were emotionally, physically or sexually abused as a result of their polio-related disability are at least 15% more sensitive to the criticism of others and more ready to believe that they are failures than polio survivors who had not been abused or those without disabilities. And the more sensitive polio survivors are to criticism and failure, the more "Type A" they are and the less likely they are to agree to complete or even begin a PPS treatment program.

Whether or not TAB actually did protect against criticism, failure or abuse, it has taken a heavy toll on polio survivors. Post-polio fatigue and muscle pain are more common in "Type A" polio survivors, as are trouble falling asleep, anxiety, frequent headaches, neck pain, back pain or muscle spasms. Type A polio survivors are also more lonely, are less likely to agree to be evaluated for PPS and are less willing to take rest breaks during the day to treat PPS.

What's more, many polio survivors' stress response system is compromised.. Polio survivors with fatigue do not release enough ACTH in response to stress. ACTH is a hormone,produced by a part of the brain damaged by the poliovirus, that both activates the brain and turns on the body's stress "braking" system. So polio survivors with fatigue are less able to activate their brains and concentrate when they need it most, that is when they are under stress.

Distress and PPS. Unexpected and disabling PPS symptoms occurring in the prime of life are understandably a cause of distress. And polio survivors do have "significant psychological distress" and symptoms of depression. Interestingly, distress and depression are not caused by PPS symptoms themselves, but when new symptoms cause the loss of the functional abilities necessary to work, socialize and participate in family life, or when polio survivors believe that PPS symptoms are beyond their control and will progress.

Depression is more common in polio survivors who have less social and family support to help them deal with functional losses. A lack of family support is also related to polio survivors not completing or even beginning a treatment program for PPS . Using crutches or a wheelchair is associated with polio survivors feeling inadequate as family members, while embarrassment about having an obvious disability is associated with refusal to use assistive devices necessary to treat PPS

Both stress and distress must be addressed if polio survivors are to make the lifestyle changes and use assistive devices necessary to manage PPS. It is recommended that all patients with post-polio receive a psychological assessment as well as individual and group psychotherapy to teach "more effective coping behaviors," decrease TAB and help deal with past abuse and feelings of inadequacy, embarrassment and sensitivity to criticism and failure that prevent polio survivors from treating their PPS


Preventing Complications in Polio Survivors Undergoing Dental Procedures

Unfortunately, only a handful of specialists treat Post-Polio Sequelae (PPS) - the unexpected and often disabling fatigue, muscle weakness, joint pain, cold intolerance, and swallowing, sleep and breathing problems - occurring in America's 1.63 million polio survivors 40 years after their acute polio. However, all medical professionals need to be familiar with the neurological damage done by the original poliovirus infection that today causes unnecessary discomfort, excessive physical pain and occasionally serious complications with surgery. This is a brief overview to inform patients and professionals about the cause and prevention of complications in polio survivors undergoing dental surgery. PRE-OPERATIVE PREPARATION

The pre-operative period is the most important, since it is when polio survivors must establish communication with their dentist or oral surgeon. Patients need to ask the dentist to read this article and the references cited. Then, patients must meet with the dentist (and anesthesiologist, if one will be involved) to discuss in detail patients' complete polio and general medical histories and the problems that may arise before, during and after the procedure. The Psychology of Polio Survivors. Polio survivors often have difficulty with any medical procedure, even dental surgery. They may have insomnia, anxiety, and even have panic attacks. These symptoms are easy to understand when it is remembered that as young children, polio survivors were ripped away from their families and underwent multiple surgeries and painful physical therapy, procedures administered often without explanation and certainly without their consent. Questions or complaints about painful and frightening procedures were not infrequently met by staff anger or even physical abuse.

It is not surprising that polio survivors can be terrified of again becoming powerless patients at the mercy of medical professionals. The dental staff's appreciation of the childhood trauma polio survivors experienced, and taking a moment to actually listen and respond to the real needs of the adult post-polio patient, will go far toward making the patient feel safer and more comfortable.

Breathing and Swallowing. We recommend that all polio survivors have pulmonary function studies before surgery, especially if a gaseous anesthetic will be used. This is vital for those who had bulbar polio, which affected the respiratory centers in the brain stem, whether or not patients used a respirator or an iron lung following the acute polio. Even patients who have (or had) neck, arm or chest muscle weakness or have swallowing problems should have their lung function tested, since even these individuals may have difficulty breathing or clearing secretions (swallowing saliva) during or after the procedure. Polio survivors with a lung capacity below 70% may need respiratory therapy or even a respirator after surgery if a gaseous anesthetic was used. Of course, polio survivors who use a respirator during the day or at night must discuss their respirator use in detail with their dentist, anesthesiologist, and their own pulmonologist before any surgery.

It should also be noted that breathing and swallowing can be compromised in those who had bulbar polio or chest wall paralysis, not only by anesthetics, but also merely by reclining in the dental chair. Polio survivors often have difficulty breathing or swallowing saliva when reclining. A comfortable reclined position must be identified before the procedure begins. And the procedure may need to be interrupted frequently to allow the patient to breath fully and to swallow. Also, a number of polio survivors have experienced severe neck or back pain following lengthy procedures, since their muscles spasm easily when placed in unusual or awkward positions, including hyperextension (extreme bending backward) of the neck. Physical Assistance. Transferring to and from the dental chair are important considerations for polio survivors who have long-standing paralysis, newly weakened muscles or joint instability and pain due to PPS. Some patients may not be able to stand or pull themselves into the dental chair. Thus, polio survivors must ask for help in transferring, especially after the procedure when they are still partially anesthetized.

Polio survivors, who typically never ask anyone for help under any circumstances, need to find a phrase with which they are comfortable that will communicate their needs. Long explanations about having had polio or PPS or the specifics of which muscles are weak or paralyzed are not necessary. For example, a simple "My legs (arms) are paralyzed and I can't get into/out of that chair. I will need help" should suffice. This phrase may have to be repeated before the polio survivor will be assisted.

If the professional replies, "Oh, I bet you can do it by yourself if you try!" or "Don't expect me to lift you," an appropriate response is "I cannot get into the chair. Please ask someone else to help me or let me speak to the doctor." A pleasant but steadfast refusal to do difficult or dangerous transfers is the polio survivor's best defense against injury before or after the procedure. General Anesthetics. Polio survivors are exquisitely sensitive to anesthetic. It has been known for 50 years that the poliovirus damaged the area of the brain stem - called the reticular activating system (RAS) - responsible for keeping the brain awake. Because the RAS was damaged in those who had paralytic and non-paralytic polio, a little anesthetic goes a long way and lasts for a long time.

For example, the pre-operative medication used to "calm" patients - often a combination of Valium and Demerol - may by itself put polio survivors to sleep for 8 hours. Such excessive and prolonged sedation can also occur when I.V. Valium is used alone. Add to a pre-operative "calming cocktail" an intravenous anesthetic (like sodium pentothol) or a gaseous anesthetic, and polio survivors have been known to sleep for several days. In addition, polio survivors with respiratory problems may have trouble clearing gaseous anesthetics. A number of our patients have awakened from anesthesia on a respirator in I.C.U. to the frightened faces of their family, surgeon and anesthesiologist several days after surgery.

Here is the first of rule of thumb - we call them "Rules of 2" - for polio survivors' having surgery: GENERAL ANESTHETIC RULE OF 2: Polio survivors need the typical dose of general anesthetic divided by 2. This first "Rule of 2" is certainly not intended to dictate the dose of anesthetic, but merely to remind oral surgeons that polio survivors need much less anesthetic than do other patients. This does not mean that a given polio survivor might require less than 1/2 the typical anesthetic dose, or that another won't need more anesthetic. As always, the dose of anesthetic must be individually adjusted (for body weight, lipid space, etc.) and be adequate to keep patients under during surgery but not cause them to sleep for a week.

Nerve Blocks. Unfortunately, polio survivors also have problems with local anesthetics. While polio survivors are more sensitive to general anesthesia, they seem to require more local anesthetic. Two research studies have shown that polio survivors are twice as sensitive to pain as those who did not have polio, apparently as a result of poliovirus-damage to endogenous opiate- secreting cells in the brain (paraventricular hypothalamus and periaquiductal gray) and spinal cord (Lamina II of the dorsal cord). LOCAL ANESTHETIC RULE OF 2 :

Polio survivors need 2 times the typical dose of local anesthetic. However, the injection of a local anesthetic can result in both pain-conducting and motor nerves being anesthetized. Polio survivors are very sensitive to anything that further impairs their poliovirus-damaged motor neurons, and a local anesthetic may cause facial, tongue and pharyngial (throat) muscles to be paralyzed for many hours, impairing swallowing and breathing, especially in those who use accessory (shoulder and upper chest) muscles to assist their diaphragm in breathing.

Also, polio survivors sometimes have adverse reactions - e.g., tachycardia, panic attacks - to the epinephrine that is typically included with the local anesthetic to cause vasoconstriction (narrowing of blood vessels) to prevent the spread of the anesthetic. If additional doses of local anesthetic are required, a preparation without epinephrine may be advisable.

Regardless of whether a local or general anesthetic is used, the following applies: POST-ANESTHETIC RULE OF 2 : Polio survivors need 2 times as long to recover from the effects of any anesthetic. Even applying the "Anesthetic Rules of 2" polio survivors may be very sedated, if not asleep, or have their breathing and swallowing impaired for many hours after the surgery. This is one of the reasons why in-office surgery for complicated dental procedures is not advisable for polio survivors. Sleeping, excessively sedated or facially paralyzed polio survivors cannot be expected to return home and take care of themselves after surgery, since sedation- impaired coordination makes falling likely and complications may go unnoticed. In spite of HMO pressure or usual practice, NO POLIO SURVIVOR SHOULD HAVE IN-OFFICE OR SAME-DAY SURGERY except for the most simple procedures that require only a small dose of local anesthetic that does not compromise breathing or swallowing.

Blood and Guts. There are yet additional concerns. Polio survivors with muscle atrophy, especially in the thigh muscles, will have a smaller blood volume than would be expected for their height or weight. Therefore, excessive bleeding during surgery may be more of a problem. Prolonged gum bleeding is also more likely since many polio survivors are taking the maximum dose of non-steroidal anti-inflamatory drugs. The dentist should be informed before the procedure of all medications the patient is taking, including over-the-counter preparations. Also, polio survivors can be sensitive to atropine-like drugs used to dry secretions during surgery. Atropine-like drugs also slow the gut, and polio survivors may be excessively constipated after surgery or, rarely, actually have their intestines stop moving (paralytic ileus) for a period of time. These problems can be treated symptomatically as they would in someone who did not have polio. POST-OPERATIVE CARE

Pain. The single most troublesome problem after surgery is pain control. A number of studies have shown that many surgical patients are under medicated for pain. Under medication is a serious problem for post-polio patients since they are twice as sensitive to pain as those who did not have polio. RULE OF 2 for PAIN:

Polio survivors need 2 times the dose of pain medication for 2 times as long. Since polio survivors are known to be extremely stoic, they are not likely to abuse or become dependent upon narcotics.

Vomiting. Another post-op problem related to brain stem damage is vomiting. As in anyone who receives a general anesthetic, polio survivors can develop nausea and vomit. However, polio survivors are more apt to faint (have vasovagal syncope and even brief asystoles) when they attempt to vomit. It is very important that post-operative emetic (anti-vomiting) control be discussed and administered before the procedure and that additional medication is provided as needed post-operatively.

Choking. As has been described, polio survivors may not be able to clear secretions, may choke (or feel like they are choking) and even aspirate if they are lying on their backs, still half asleep, as the anesthetic is clearing. Polio survivors' secretions need to be monitored after the procedure and they should be positioned on their side so that secretions can drain. RECOVERY

When polio survivors do awaken from a general anesthetic they may still be twice as sedated as are other patients. Since polio survivors need a very clear head to be able to control their weakened, polio-affected muscles to stand and walk, a fuzzy-headed polio survivor is at serious risk for falling. Polio survivors may also have low blood pressure after surgery that could itself cause lightheadedness, fainting and falls. RULE OF 2 for RECOVERY:

Polio survivors need 2 times longer to recover than do other patients. Under any circumstances, polio survivors should get up slowly after the procedure, first sitting up, then getting into a chair with assistance, then standing with assistance and finally walking with assistance and appropriate assistive devices. Polio survivors have learned to be very aware of what their bodies can and cannot do. They are the best judges of when they can move, stand and walk safely.

Post-Op PPS? The 1985 National Survey of Polio Survivors has shown that emotional stress is the second most frequent cause of PPS (physical overexertion being the first). Certainly, there are few emotional or physical stressor more potent then surgery. So, polio survivors should expect some increase in fatigue and muscle weakness resulting from the combination of the physical and emotional effects of the surgery, anesthesia and other medications. However, patients should be reassured that only a small handful of post-polio patients permanently lose function after surgery. Strength or endurance lost after surgery are typically recovered. Polio survivors need to remember: RULE OF 2 for FEELING BETTER:

Polio survivors need 2 times longer to feel "back to normal" again.


All of the "Rules of 2" are suggestions for polio survivors, the dentist and oral surgeon; they are not intended as substitutes for specific information about the individual patient, communication between doctor and patient, and clinical judgment. All polio survivors must be evaluated and managed according to their individual needs. Please take the time to read the following references (especially those in bold type) so that you will be fully knowledgeable about and be able to help meet polio survivors special needs before, during and after dental procedures.


Changing Your Life By Conserving Energy

Polio survivors need to learn to conserve energy if they are to control their symptoms of pain, weakness, and fatigue. It takes effort and a change in attitude to learn to use energy conservation to our greatest advantage. Using our energy well can allow us to do more and do it better. This article suggests four principles of energy conservation and three techniques for making the necessary changes in our lives. Many of us don't have the strength and energy that we used to have so it's time we started taking better care of ourselves.

WHY SHOULD WE LEARN TO CONSERVE ENERGY? In a study by Peach and Olejnik, recommendations for change included "decreasing overall daily activities, a change in job, work environment modifications, a decrease in work hours, a decrease in social and recreational activities or taking rest breaks. New or additional orthotics were also recommended to effect safer, less painful, and more functional gait patterns. In some patients, a component of disuse weakness was noted.

In these cases, appropriate aerobic exercises were recommended, carefully avoiding over-exercising paretic extremities. A number of these patients had become overweight so a weight loss program was recommended." Those who made recommended changes showed either improvement or resolution of symptoms of weakness, fatigue, and muscle and joint pain. Those who didn't make changes found symptoms were either unchanged or increased.

Those with post-polio syndrome who were able to make changes and successfully control the factors responsible for overuse did not lose muscle strength. Polio survivors who didn't make changes knew what they needed to do. Many simply refused to make changes in the behaviours that lead to overuse.


Agre and Rodriquez noted that the amount of isometric "work" performed during interval exercise was significantly greater (237% on average) than during constant exercise. (Interval exercise was simply the constant exercise divided into quartiles by 2 minute rest breaks or into 20 second intervals with 2 minute rest breaks.) They also found that those with symptomatic post-polio were able to monitor local muscle fatigue and avoid exhaustion. Symptomatic post- polio subjects also recovered strength significantly less readily than a control group. If we allow ourselves to become overtired it takes us longer to get our strength back. By changing our activities to include rest breaks we may find we can do more with less effort.


Change is not always easy. In fact many polio survivors find change very frightening. Change requires examining the attitudes and beliefs that keep us from feeling well. We can change the quality of our lives by changing the way we look at our circumstances. Creative people are most successful at doing this over the long term. They see opportunity, where others see insurmountable problems. There is no reason we cannot see ourselves as creative and start making our lives better. Creative people are simply those who see themselves as creative.

The way we see ourselves may interfere with our ability to change. One approach to the whole issue of activity is to be kind, positive, and gentle with ourselves. The person behind the pain and fatigue, the real you, is a capable, worthy, individual and a beautiful human being. It's time to start treating ourselves like the wonderful beings we are. It's time to start taking care of ourselves as if we were precious possessions.

Only you can decide to be sore and tired or relaxed and comfortable. You must decide if you want your weakness and fatigue to progress. You are responsible for what you do. You have no control over anyone other than yourself, and only when you are clear about who is responsible for your activity will you have the power to master it. You have the capacity to recognise fatigue and overuse. You must decide how much you will or will not do.

Your mate, your friends, your boss, your doctor, your physiotherapist, and your occupational therapist can only advise you. When you go on Dr X's Program, you may lose the power to choose when, what, and how much you're going to do. It may carry with it the terrifying feeling that you are back in the polio ward again and someone else is in charge of what you do. It also gives you someone else to blame for your weakness and fatigue - Dr X's Program didn't work. You have given your power away to Dr X. Dr X may have some useful suggestions, but only you can decide what works for you.


The main principles of conserving energy include (1) doing what you most want to do, (2) planning activities for times when you have most energy, (3) learning what your maximum work is and respecting the signs of fatigue you experience, and (4) stopping before you become exhausted.

(1).Before you begin any activity you should think about whether you really want to do it at all. Don't ask yourself what you should do; ask yourself what you want to do. It is important to be flexible. Let others in the house or office help you with the jobs you find tough. Delegate tasks whenever possible.

(2).Plan your activities for when you have most energy. Most people don't think about doing things if they are tired. Don't waste energy by trying to do more than your body can comfortably do. If you are tired by noon, plan activities for the morning. We take a long time to recover if we allow ourselves to become exhausted.

(3).Learn what you can do without pushing yourself and respect the signs of fatigue (including muscle soreness, tiredness, muscle weakness, change in quality of movement, grimacing, etc.). Work simplification is an important tool to use in reaching our daily and long term goals in life. Work at a comfortable easy pace and avoid tension. A moderate work pace uses the least amount of energy and you will make fewer mistakes. Alternate heavy with light work each day and throughout the week. Break up heavy jobs over several days. Sit for as many jobs as possible. Allow time for interruptions and emergencies. If you find walking difficult, take along a wheelchair or get a scooter and save your energy for more important things. Pay attention to your body's signals. Care enough about yourself to listen to the messages of pain and fatigue.

(4).Plan rest periods during the day and STOP before becoming exhausted. When taking a rest, relax completely with your feet up. Try resting 10-15 minutes between each hour or two of activity. It will probably take some trial and error to determine what is best for you. If you get tired in the middle of the day, have a one hour sleep early in the afternoon.

Don't expect the impossible because even with a good plan, there will be setbacks. There are things we can't change and accepting these will help make our lives work better. Sometimes we have to be willing to do a job less thoroughly than usual so we will have the energy to spend on our family or friends. Other times we may choose not to do the job at all!


Kohl suggests three techniques that we could use to help ourselves make changes. These are push to avoid pain, blank pad, and plain talk.

The push to avoid pain system acknowledges the amount of energy that we must generate in order to reduce our activity level. It is a statement of action, not of failure or backing down. It means that we are dedicated to taking care of ourselves. Other people, obligations, and commitments will be prioritised according to pain thresholds and those actions that reduce pain. To delegate is action; to use nighttime oxygen or respiratory equipment is an action with enormous consequences; to retain authority in a seated position requires great assertiveness. Taking care of ourselves is not giving in but rather a restatement of control. The pain will not control us, we will control the pain.

The blank pad method of documenting accomplishments during the day reinforces a sense of purpose. Instead of making list after list of things to be done and then crossing off what has been completed, use a blank pad to record all you have done. It is a great training exercise for developing awareness of all the energy expenditure that does occur. It also saves us from devaluing ourselves for that which was not done. The goal is to avoid negative feedback at the end of the day and replace it with positive feedback.

Plain talk was developed in response to people asking how to keep themselves and others from feeling manipulated. If someone does not respect a simple "No" in response to a request, we may have to ask "Why do you want me to be in pain, more tired, overextended, not able to enjoy our time together, etc.?" We need to practice simply worded responses that will increase the other person's awareness of the impact of their requests without creating defensiveness.


You have changed physically. Your old coping strategies don't work anymore. You must decide if you want your weakness and fatigue to progress. You are responsible for what you do. When you are clear about who is responsible for your activity you have the power to master it. You can live better if you adapt to the changes in your body. Energy conservation can help you feel better and do more with less. Only you can make the decision to take control and take care of yourself.


Nutrition and Post Polio Syndrome

(Thanks to the P.R.Y.S. Foundation Website)

Let me first say that I am no expert here, but my training is in Nutrition and Education. I must caution all of you trying to lose weight to please do it sensibly. A low fat diet (with portion control) and exercise (to whatever degree you can do) works the best. Jane Brody recommends in her Nutrition Book a diet high in fiber, but balanced with all foods. A weight loss of one to two pounds a week is recommended. With fast weight loss muscle tissue is diminished, and even worse when you regain weight it is added as fat, not muscle tissue. Thus, yo-yo dieting where you lose - gain, lose - gain is not recommended. If you fall into the category of morbidly obese, you should be under a doctor's care for more options.

Diet pills are dangerous. Protein diets are dangerous. Be very careful. Seek out a knowledgeable doctor. A multivitamin might be advisable, if you can tolerate it. Megavitamins can be a problem and ought to only be attempted under a doctor's care. Some studies with vitamin B-6 have proven mega doses of this vitamin can help certain rare disorders, but people who self treat with mega doses of B-6 risk severe NERVE damage. Be cautious. Excesses of water soluble vitamins are also excreted from the body and sometimes only create a placebo effect.

FYI: Vitamins are either water soluble (8 B vitamins and C) or fat soluble (vitamins A, D, E, and K). Since the fat soluble are stored in the body, they can build up to toxic levels. The water soluble vitamins are not generally stored and the excess are washed out of the body through urine or sweat. They need to be replaced daily.

Be aware of the salt you use in and on your foods. Salt is a combination of sodium and chloride (NaCl). Sodium (Na) occurs naturally in foods. However, in natural unprocessed foods, sodium is low and phosphorus is high. In processed foods, they are generally high in sodium (or even salt) and low in phosphorus.

Try to eat foods in as close to their natural state as possible. Fresh fruits and vegetables (high in fiber), grains like oatmeal instead of processed sugar (or honey) ladened foods. Read labels: for cereals look under Total Carbohydrates in Nutrition Facts, the Sugars should be 0 g (grams) to not more than 6 g. Also, change to lower fat (or low fat) dairy products. You can save many fat calories by switching to a lower fat milk . If you drink whole milk switch to 2% , if your drinking 2% try 1%, etc. You still get all the calcium and added vit A and D in low fat. I don't advocate raw meats, fish, as a natural food. Trim the visible fat, take the skin off the chicken and bake, don't fry whenever possible.

Vegetarianism may prove to be beneficial to some people. Just remember that you need to include other sources of protein if you eliminate meats entirely. Vegetarians can get protein if they eat dairy or eggs. If not, protein is found in nuts and nut butters, beans and vegetables. There are web sites for vegetarian foods that are worth checking out.

I am not trying to add to the "well, what can we eat now?" syndrome. If your eating habits are terrible, just try to change a little at a time. If fresh fruit is too expensive (but look for bargains) buy canned. Just try to read labels. Enjoy treats even if you are eating well. I like cookies, but generally make my own or buy low fat as treats (mine are better).

Use medications that work for you, but only try one at a time to see its effects. Use the lowest dosage that works. Be careful with drug interactions. Drugs have side effects depending on the person. The question is: do the benefits outweigh the risks? Like nausea, does it go away? You decide if it is working for you.

I have been taking note of the many medications than can help PPS pain so I will know what I can try if my present meds don't work anymore. Hope no one is attempting to try them all, unless your need is great and you have doctors advice. Henry has given very sound information on the use of low dosages of anti-depressants that are helping some people. Keep an open mind, learn to hear what your body is trying to tell you, practice pacing yourself, and learn to say no.


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