2. januar 2004 Sent on behalf of Dick Bruno at PPSENG@aol.com Dr. Richard L. Bruno Chairperson International Post-Polio Task Force and Director, The Post-Polio Institute and International Centre for Post-Polio Education and Research and Fatigue Management Programs and Center for Aging and Disability Englewood Hospital and Medical Center Englewood, New Jersey U.S.A. 07631 Phone: (201) 894-3724 Toll Free: 1-877-POST-POLIO Fax: (201) 542-6491 POSTPOLIOINFO@AOL.COM Click on "Post-Polio Letter" at http://www.postpolioinfo.com for The Post-Polio Letter, the PPS Library and all of our papers describing our research and treatment of PPS and CFS/ME and http://newmobility.com/polio.cfm for New Mobility's Post-Polio Forum for more PPS information at NewMobility.com). How to STOP Being Vampire Bait: Your Personal Stress Annihilation Program" will be published in 2004. The Polio Paradox: Uncovering the Hidden History of Polio to Understand and Treat "Post-Polio Syndrome" and Chronic Fatigue is in book stores now. ________________________________________________________________ T'N'T TIPS AND TECHNIQUES FOR TREATING CHRONIC FATIGUE by Dr. Richard L. Bruno Director, The Post-Polio Institute and Fatigue Management Programs Englewood (NJ) Hospital and Medical Center <> Recent research suggests that the answer may be "Yes." We're all aware of the dangers of alcohol. In the short-term alcohol can trigger headaches and decrease both attention and coordination. Over time alcohol is the number one cause of liver disease and the perils of alcohol addiction are all too well-known. But moderate drinking may be good for polio survivors and almost everyone. First, alcohol makes you and your muscles relax, slows your heart rate and your breathing--all good things. Alcohol is said to do these things by "depressing" the brain, discharging neurons' internal batteries and making them less able to fire. Of course, if you discharge the batteries too much you have a falling down, snoring drunk. Too much muscle relaxation isn't good in polio survivors whose muscles aren't so strong to begin with. And, as your experience makes clear, polio survivors' damaged brain activating systems make them more sensitive to anything that causes brain "depression." So you need to be careful about how much and when you drink, especially if you have post-polio fatigue and if you're taking medications that themselves cause sedation. But just as alcohol can be a dangerous drug, we are just discovering that it can also be a helpful medication. A 2003 study of older Americans found that those who drank between one and six alcoholic drinks throughout the week were half as likely to have dementia than those who abstained. (A drink was defined as a 12-ounce beer, a 6-ounce glass of wine or a shot of liquor.) A 2002 study found that daily drinkers had a 42% lower risk of developing dementia than the nondrinkers. Those who weren't daily drinkers but had more than one drink per week had a 25% lower risk, and those who drank less than a glass a week were only 18% less likely than nondrinkers to develop dementia. Alcohol has also been found to be good for the heart. In 1997 a survey of 22,000 physicians found those who had one drink a day had about half as many heart attacks. A 2002 study found that men who had a drink at least five days a week had a 35% lower risk of heart attack than men who did not drink. In 2003 a ten year follow-up study of nearly 500,000 men and women reported that those who averaged one drink a day had a 21% lower risk of death from heart disease than did nondrinkers. Drinkers also had lower rates of clogged arteries in the legs. Notably, the benefits decreased in those who averaged at least four drinks a day. How does alcohol protect against dementia and heart disease? Alcohol seems to keep your arteries clear and free flowing. Wine and hard liquor were found to raise levels of HDL (high density lipoprotein), the "good" cholesterol. Beer has been found to increase HDL, decrease LDL (low-density lipoprotein, the "bad" cholesterol) and reduce the amount and activity of fibrinogen, a blood cl ot-producing protein. Healthy postmenopausal women who had two drinks a day showed lower triglyceride levels and increased insulin sensitivity, the later known to protect against adult-onset diabetes. Unfortunately, there are also side effects of these "medical" uses of alcohol. In doses found to help prevent dementia and heart disease, alcohol has been associated with cancer. Male physicians in the 1997 survey who had more than two drinks a day had a higher rate of cancer. Women who had even one drink a d ay had a 30% higher risk of dying from breast cancer. And alcohol provides "empty" calories that put on weight. One drink equals about 100 calories. If you have 12 drinks a week you’re adding the equivalent of almost one extra day’s worth of food! Should you have drunk a fifth on the Fourth? Absolutely not. But the moderate use of alcohol--possibly as little as one drink a day--appears to confer significant health benefits. Maybe they had it right back in the 1950s? Dad partaking with Mom in a before-dinner martini might just be the cure for a number of ills. Especially for hard-driving, tightly-wound, Type A polio survivors, an early evening visit with good ole Jim Beam may relax the body and brain in the short term, and in the long term may actually help to save your life. (But please talk to your doctor before changing your alcohol intake.) << Dr. Richard Bruno is Chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood (NJ) Hospital and Medical Center. His new e-book, How to STOP Being Vampire Bait: Your Personal Stress Annihilation Program," will be published in 2004. E-mail him at PostPolioInfo@aol.com>> ______________________________________________________________ T'N'T TIPS AND TECHNIQUES FOR TREATING CHRONIC FATIGUE by Dr. Richard L. Bruno Director, The Post-Polio Institute and Fatigue Management Programs Englewood (NJ) Hospital and Medical Center <> You're asking a good question but are using buzz words that Americans hear on infomercials. It's vital that polio survivors understand what the research really says about exercise for newly-weakened muscles and know the definitions of "muscle tone" and "deconditioned." We never tell polio survivors or those with CFS to "do nothing." Both The Post-Polio Institute and Warm Springs long-term follow-up studies find the same thing. All PPS symptoms, fatigue, pain and muscle weakness, decrease when polio survivors stop exercising and follow The Golden Rule: If anything causes fatigue, weakness or pain, DON'T DO IT! (Or do much less of it.) Unfortunately, those who recommend strengthening exercise to polio survivors quote from the conclusions of a half-dozen small studies of leg muscle strengthening, apparently without having read them critically. The studies' conclus ions say that exercise programs "lead to significant gains in strength." However, when you look at the responses of individual subjects the "significant gains in strength" are hard to find. Just over half of the studies’ subjects had an increase in upper leg muscle strength of about 26%. One quarter had no change in strength while 21% actually had a decrease in strength of about 10%. So almost as often as not exercise either had no effect or actually decreased muscle strength. What's more, only two studies asked whether exercise affected polio survivors' fatigue and their ability to function in their daily lives. In one study, strength increased by 36% but muscle fatigue also increased by 21%. In the other study, although muscle strength increased by 30%, there was no improvement in polio survivors' ability to do daily activities, and muscle fatigue increased as much as 300%! You have to ask what good comes from any small percentage increase in muscle strength that is not related to improved functional ability and that actually increases muscle fatigue more than strength. And what of "muscle tone?" Most people think that muscle tone means muscles that are firm and have a nice shape. Muscle tone actually means that muscle fibers are ready to contract. Muscle tone is lost when motor neurons are damaged and can't turn on muscle fibers. Loss of tone can happen when polio survivors exercise too much and muscles become weaker when poliovirus-damaged motor neurons fail. Remember, PPS researcher Alan McComas found that polio survivors who have muscle weakness lose at least 7% of their motor neurons each year (see New Mobility's PPS Forum, June 2001, at NewMobility.com). This is why he concluded that "polio survivors should not engage in fatiguing exercise or activities that further stress metabolically damaged neurons that are already overworking." Polio survivors' muscles get smaller lose tone if they're overused and the motor neurons that turn on the muscle fibers die. Arms and legs get flabby because of increased fat deposits, not a loss of muscle tone. Exercise does burn fat and at first causes muscles to increase in size. But polio survivors don't want bigger muscle fibers because they "further stress metabolically damaged neurons that are already overworking." The best way to prevent flabby arms and legs is to stop overusing and abusing your motor neurons and to follow the higher protein, low fat and lower carb Post-Polio Diet (see New Mobility PPS Forum July, 2002, at NewMobility.com). And what does "deconditioned" mean? Many polio survivors believe that there are only two ways to live: overusing and abusing or being a couch potato and becoming "deconditioned." Deconditioning is something that happens when astronauts live in space or you put someone to bed for weeks, removing the pull of gravity and causing a decrease in blood volume and blood pressure. Deconditioning can only happen if polio survivors never leave the couch, not if they take two daily rest breaks on the couch, take a ninety minute nap, stop strengthening exercising or use a power wheelchair. However, polio survivors may need to "condition" their hearts, especially if they have had a heart attack. "Cardiopulmonary conditioning" uses exercise to strengthen the heart muscle (which was not affected by polio) and make it work more efficiently. However, there is no benefit to running on a treadmill or riding a bicycle to exercise the heart if you thereby stress and kill off poliovirus-damaged motor neurons. Many polio survivors can do heart conditioning by using their less affected limbs, usually their arms, in a carefully monitored program of paced and non-fatiguing exercise (see New Mobility PPS Forum, May 2001, at NewMobility.com). << Dr. Richard Bruno is Chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood (NJ) Hospital and Medical Center. His new e-book, How to STOP Being Vampire Bait: Your Personal Stress Annihilation Program," will be published in 2004. E-mail him at PostPolioInfo@aol.com>> _______________________________________________________________ T'N'T TIPS AND TECHNIQUES FOR TREATING CHRONIC FATIGUE by Dr. Richard L. Bruno Director, The Post-Polio Institute and Fatigue Management Programs Englewood (NJ) Hospital and Medical Center << I have terrible trouble climbing stairs. I get totally out of breath and my hips and knees kill me. My doctor sent me for breathing studies, a stress test and X-rays. My lungs and heart are fine but I have arthritis in my "good" left hip and knee. The orthopedist says I may need a hip replacement. But both hips hurt the same when I climb stairs. What's wrong with me?>> You probably just have PPS. Many Post-Polio Institute patients report shortness of breath when climbing stairs or walking any distance. Your doctor was right to test your lungs and heart first. You should always rule out other diagnoses before saying symptoms are due to PPS. But it's usual that those tests would be negative. The overwhelming majority of polio survivors aren't short of breath because of lung or heart disease. The problem is that they're doing too much with too little. Since polio survivors have half the usual number of motor neuron on average and have weaker muscles, it makes sense that activities that aren't breathtaking for others will be for polio survivors. If one of our 25-year-old therapists gets winded running up a flight of stairs, you wouldn't worry that she had heart disease. She is short of breath because she just did something strenuous. Polio survivors may be using the same amount of energy walking up stairs as the therapist does running. What is the treatment for your shortness of breath? Stay off the stairs. And the treatment's the same for joint pain. The overwhelming majority of polio survivors don't have hip, knee or back and neck pain due to arthritis. The pain-causing culprit is usually overexertion, doing too much with too few motor neurons and weakened muscles. When you climb stairs repeatedly, your muscles burn, your ligaments complain and you develop "polio hip"-- inflammation and bursitis in your overstressed joint. The same thing can happen in your knee or shoulder. The big question is if your pain is in the joint, due to arthritis, or in the muscles and tissues around the joint. Even if severe arthritis is causing hip pain, polio survivors aren't the world's greatest candidates for joint replacement. You need strong muscles around an artificial hip to hold it in its socket. Unfortunately there isn't even one follow-up study of hip replacements in polio survivors. But our experience is that polio survivors with severe arthritis can have successful hip replacements if their hip muscles are strong enough. Adequate muscle strength is also the limiting factor when polio survivors have total knee replacements, as the only follow-up study shows. Pain decreased and function increased after knee replacements in 60% of knees where the thigh muscle had at least antigravity strength. But all knees with less than antigravity strength and 45% of the knees even with antigravity strength weren't better or got worse after the replacement. So knee replacements aren't a cure-all for post-polio knee pain. Unfortunately, some polio survivors have actually been told that knee replacement is a "cure" for new leg muscle weakness, especially knee buckling due to a weak quadriceps. A patient came to The Post-Polio Institute from Puerto Rico had both knees replaced with the promise of walking without braces; he was unable to stand at all after surgery. Replacing a joint to "cure" post-polio muscle weakness is like replacing a tire to "cure" a car that's run out of gas. If you have a joint replaced, you need to be concerned about muscle weakness after surgery. In this age of managed care your insurance company will want you out of the hospital long before your muscles are ready. Non-fatiguing muscle strengthening exercise--which is monitored by a physiatrist and physical therapist knowledgeable about PPS and whose pace is determined by you--is required if muscle strength is to be regained and retained after surgery (See the "Preventing Surgical Complications" articles in The Post-Polio Library at postpolioinfo.com/postpolio.) But before you decide to replace anything you need to stop your huffing, puffing and moaning by stopping the climbing. This is true for polio survivors and for people with CFS. Limit trips up and down stairs to two a day, get treated for inflammation or bursitis and then see how your joints feel. Even if you end up needing a joint replacement, replace your stair climbing now with a stair glide. Your lungs will thank you. And remember that old adage: Be true to your joints and they won't be false to you. << Dr. Richard Bruno is Chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood (NJ) Hospital and Medical Center. His new e-book, How to STOP Being Vampire Bait: Your Personal Stress Annihilation Program," will be published in 2004. E-mail him at PostPolioInfo@aol.com>> _______________________________________________________________ T'N'T TIPS AND TECHNIQUES FOR TREATING CHRONIC FATIGUE by Dr. Richard L. Bruno Director, The Post-Polio Institute and Fatigue Management Programs Englewood (NJ) Hospital and Medical Center <> You'd think that with polio survivors in our 1995 Survey reporting 34% more physical and 94% more emotional abuse than non-polio survivors, PTSD symptoms would be rampant: flashbacks, avoiding reminders of the trauma, and hyperarousal--elevated heart rate, sweating, rapid breathing and an increased startle response. It's true that some polio survivors have flashbacks and that many have avoided hospitals because they are reminders of past abuse. Although nearly 50% of those in our 1985 Post-Polio Survey reported frequent anxiety, in the past 20 years I have never treated a post-polio patient I could diagnose with PTSD. I think PTSD is rare in polio survivors because it is by definition a response to a short-lived traumatic event, like a car accident or natural disaster. Polio survivors didn't experience a one-time trauma. They experienced long-term physical and emotional abuse: months or years of hospitalization, painful therapies and surgeries, plus abuse over a lifetime caused by living in a society terrified by the "Dread Disease" and repelled by the appearance of disability. A new diagnosis -- "Complex PTSD" -- has been suggested by researcher Judith Herman to describe symptoms caused by long-term trauma in those held in captivity, unable to flee and under the "total control" of an abuser. This would include those in concentration camps or who experienced long-term domestic violence, physical or sexual abuse, as did too many polio survivors. The symptoms of Complex PTSD include persistent sadness, suicidal thoughts and explosive anger; flashbacks of or amnesia for traumatic events; feeling detached from one’s body and isolated from and not trusting others; feeling shame, guilt, stigma, despair, helplessness or hopelessness; feeling "completely different" from other people; avoiding thinking and talking about abuse because of overwhelmingly painful feelings or using alcohol and drugs to avoid and numb feelings; giving total power to and becoming preoccupied with the abuser, with thoughts of revenge and searching for a rescuer, and even self-mutilation. Sometimes those with Complex PTSD are thought by others to have a "weak character." I have yet to meet a polio survivor thought to have a weak character. Polio survivors are if anything too strong, independent and self-sufficient, spending their lives caring for others, not searching for a rescuer. Polio survivors do push away the past, but they don't become preoccupied with their abusers, with revenge and don't mutilate themselves. Nor do they typically have explosive anger or use alcohol and drugs to avoid and numb feelings. Yes, some polio survivors have flashbacks, as you describe. Some can't remember early abuse and do avoid thinking and talking about their painful pasts. Many feel shame, guilt, and stigma, are detached from their bodies, feel "completely different" and isolated from and distrust others. And most polio survivors have sadness, despair, helplessness or hopelessness when PPS symptoms emerge. However, it isn't necessary or even desirable for polio survivors to find a diagnostic label in order to “explain” how they feel, physically or emotionally. Labels are commonly applied to polio survivors symptoms, both physical and emotional, and are most unhelpful. For example, polio survivors' back pain is typically incorrectly labeled as being caused by "pinched nerves" or "slipped disks" instead of being due to muscle spasms. Joint pain is often wrongly labeled as "arthritis" instead of being the result of overuse. So, too, labels are often wrongly applied when it comes to emotions. Feelings of sadness, despair, helplessness or hopelessness are too often labeled "depression" and treated with a pill in hope that the feelings will go away. It is far better to work with a knowledgeable psychotherapist to deal with your feelings than to accept a label, be it depression or PTSD. It is hard and painful work -- but extremely helpful -- to face the lifelong terror and guilt that causes you to care for others instead of yourself, to be detached from your body and to ignore your own needs. A therapists can help you stare down the fear, shame and stigma that make you isolate yourself and feel different, change your lifestyle and use assistive devices necessary to manage PPS. And it is frightening, but necessary, to face your flashbacks, knowing that they are merely remnants of a painful past that you did indeed survive. That’s what being a polio survivor is all about. << Dr. Richard Bruno is Chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood (NJ) Hospital and Medical Center. His new e-book, How to STOP Being Vampire Bait: Your Personal Stress Annihilation Program," will be published in 2004. E-mail him at PostPolioInfo@aol.com>> ________________________________________________________________ T'N'T TIPS AND TECHNIQUES FOR TREATING CHRONIC FATIGUE by Dr. Richard L. Bruno Director, The Post-Polio Institute and Fatigue Management Programs Englewood (NJ) Hospital and Medical Center <> Mestinon? Narcotics? Soma? Nembutal? My, oh my. Where to begin? First, there are no drugs that decrease post-polio weakness. An international, double-blind, placebo-controlled study found that Mestinon did not improve muscle strength in polio survivors. The same is true for insulin-like growth factor (which is similar to growth hormone), prednisone (a powerful steroid) and amantadine, a Parkinson's disease drug. In 1995 we did a double-blind, placebo-controlled study of bromocriptine, which is a more powerful Parkinson's drug than amantadine. But we used bromocriptine to treat fatigue, not muscle weakness. Patients on bromocriptine reported a noticeable reduction in fatigue and "brain fog:" difficulty with attention, concentration, word finding, mind wandering, memory and thinking clearly. Is bromocriptine then "the" treatment for post-polio fatigue? Not at all. We don't recommend drugs, even bromocriptine, to treat fatigue in polio survivors or those with CFS. Fatigued folk shouldn't pump themselves up with any drug, be it caffeine or, heaven forbid, "pep-pills" like amphetamines, Ritalin or Adderal. Actually, our study's most important finding was that nearly 90% our patients were not eligible as subjects since their daily fatigue decreased markedly after they had applied all of the PPS symptom management techniques. Post-Polio Institute patients' muscle weakness and pain also significantly decrease when they conserved to preserve. That's why we also don't use narcotics or muscle relaxants, like Soma, to treat pain. Pain is you're body's way of telling you to slow down. As for nembutal, that's a 1960s sleeping pill, not a pain pill. Polio survivors and those with CFS who have insomnia shouldn't be taking nembutal,; neither should those who have pain. If you have trouble sleeping or have daytime fatigue, you should get a sleep study to find out why you can't sleep, not use a sleeping pill - be it nembutal, amitriptyline, Ambien -- or over-the counter pills like Tylenol PM, to drug yourself into oblivion. Polio survivors and PWCs are very sensitive to any drugs that are that are sedating, sleeping pills as well as antihistamines and some medications for high blood pressure, like beta blockers. And of course drugs intended to sedate you knock polio survivors for a loop. "Mild" anesthetics used for "twilight sleep" during a colonoscopy, endoscopy or before major surgery -- fentanyl, Versed, propofol -- and certainly the gas anesthetics that keep you under during major surgery, can make polio survivors sleep for hours longer than they should and make you groggy and unsteady for days. (See the "Preventing Surgical Complications" articles in The Post-Polio Library at postpolioinfo.com/postpolio.) Unfortunately, there's lots you can read on the Internet concerning pills that are said to either hurt or help polio survivors. The buzz in the post-polio community is that muscles break down in polio survivors taking cholesterol lowering "statin" drugs like Lipitor. There have been no specific studies of the effects of statins in polio survivors. Only about one-half of 1 percent of anyone who takes a statin develops rhabdomyolysis, a condition where muscles do indeed break down. We have seen a few of these cases which are diagnosed by measuring an increase in CPK (or CK), an enzyme that is released when muscle breaks down. However, the one study looking at CPK in polio survivors found that the average level is elevated to 225 (normal is less than 150) in those with muscle weakness who are not taking statins. So polio survivors should have CPK measured before ^ taking a statin. If you are on a statin drug and you feel any muscle pain or weakness, especially in your calf muscles, stop the drug immediately, call your doctor and have a your CPK measured. If you don't want to take a statin at all, ask you doctor if you can try changing your diet, taking slow-acting niacin or a bile acid sequestrant drug to lower cholesterol. Finally, there have been no studies showing that herbal remedies -- carnitine, cysteine, or coenzyme Q10 -- reduce PPS symptoms. Polio survivors shouldn't think that they can run themselves ragged, pop a pill and make PPS disappear. Self-care -- not medication -- is the prescription for post-polio fatigue, weakness and pain. << Dr. Richard Bruno is Chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood (NJ) Hospital and Medical Center. His new e-book, How to STOP Being Vampire Bait: Your Personal Stress Annihilation Program," will be published in 2004. E-mail him at PostPolioInfo@aol.com>>