FLORIDA EAST COAST POST-POLIO SUPPORT GROUP - Vol. 12 #6 12 Eclipse Trail / Ormond Beach, FL 32174 / 386 676-2435 E-Mail:- bgold@iag.net - Web Site:- home.iag.net/~bgold MAY / JUNE 2005 ******************************** WE WISH ALL OUR FRIENDS A FLOWER FILLED and LOVING MOTHER’S DAY A SUNNY MEMORIAL WEEKEND -and- A FANTASTICALLY LOVING FATHER’S DAY ********************************* MEETING NOTICE May 15th, 2005 -- Donna Maitland, Asst District Manager of our local Social Security Office will present information re the new Medicare Part D Program to assist eligible seniors with prescription medications. September 18th, 2005 -- Dr. David Dysart (Ph.D), “The Polio Legacy: One Mother and her Child’s Story.” November 20th, 2005 -- Speaker from Hill & Ponton, law firm will discuss Social Security Disability ********************************** CONTENTS From Barbara Once Stricken, Twice Afflicted Might I have Post-Polio Syndrome Is There a Cure What are the Risk Factors What about Exercise Disabled Cruise Passengers Ask for Justices’ Protection Importance of Calcium and Vitamin D Are You at Risk for Type 2 Diabetes Cancer Screenings and Other Medicare Preventive Services Travel Smart Recipe How to be a Good Friend Eat Smart Attorneys’ Advice – No Charge 50 years ago If My Body Was a Car Dues Calendar Watch Conspiracy Knee Jerk Reflex Q & A ************************************ FROM BARBARA Well, I have little to report right now. However, I did go to Disney’s Animal Kingdom with my 11 year old grandson and 9 year old granddaughter and was glad to see that the park was very accessible. Heading to Long Island for my newest grandson’s christening April 19th to the 29th – flying there – so finishing this up a little earlier than normal. Anything interesting happens I promise to put it into the next newsletter. ************************************ The following article is reprinted from the Post-Polio Survivors Spt Grp, Wilmington, DE’s newsletter, Winter 2004-2005 Once Stricken, Twice Afflicted As told by Jack, Mientsma From AWAKE! July 23, 2004, published by Jehovah’s Witnesses Editor’s Note: This is one of the most complete, but concise and clear summaries of PPS that I have seen recently. I believe that, though we already understand most of PPS cause and effect, this article is worth reading, and for the most part, secular. As a result of effective vaccines and diligent immunization programs, science has made great progress in its effort to eradicate polio, a debilitating childhood disease. However, even decades after recovering from polio, some survivors find themselves afflicted again, facing what is called post polio syndrome (PPS). You many never have heard of PPS. Neither had I until it became very much a part of my life. But in order to understand the syndrome’s effects on me, let me go back to a day in 1941, when I was about a year old. My mother noticed that I was slumped over in my high chair. She rushed me to the doctor. After examining me, the doctor told my mother, “Your son has infantile paralysis.” I was soon paralyzed from the waist down. After six months on a waiting list, I was admitted to the hospital. Years of recurring illness followed. Through intense physical therapy, I gradually regained the use of my legs. At the age of 14, I was walking again. But other problems, such as incontinence, remained. Over the years, I went through several cycles of surgery, confinement to a wheelchair, and physical rehabilitation. Still, my left foot is three shoe sizes smaller than my right foot, and my left leg is an inch shorter than my right leg. It was not until I was in my early 20’s that I got the embarrassing problem of incontinence under control. Finally, I was completely over polio – or so I thought! Then at age 45, I began to experience pain in my legs, followed by fatigue. Also, my leg muscles moved involuntarily at night, making it very difficult for me to sleep. The symptoms did not let up; they only worsened. You can imagine my surprise when I was diagnosed with PPS – 44 years after my mother recognized my initial illness. What is polio? Polio is a highly infectious disease caused by a virus that enters the body through the mouth and multiplies in the intestines. After invading the nervous system, the virus can quickly cause total paralysis. As the virus passes along to the brain and then to the spinal cord, initial symptoms are fever, fatigue, headache, vomiting, stiffness in the neck, and pain in the limbs. Many of the nerves stop functioning, resulting in paralysis of some of the muscles in the arms, legs, and chest. But the body’s recuperative powers are amazing. Nerves that were not affected by the virus (or somewhat recovered, Ed.) send out new “sprouts,” as if running extra telephone lines, to reconnect the muscle cells that were orphaned when their previous nerves died. A single motor neuron in the spinal cord may also grow terminal axon sprouts, which may connect to many more muscle cells than it did originally, thus greatly increasing the neuron’s capacity. A motor neuron that previously stimulated 1,000 muscle cells might eventually reconnect to between 5,000 and 10,000 cells. This is evidently what happened in my case, so that I am able to walk again. However, it is presently thought that over a period of 15 to 40 years, these neural-muscle units may begin to show signs of fatigue because of being overworked. PPS is a condition that causes symptoms to reappear in individuals who had recovered from polio decades earlier. Many victims experience muscle weakness, fatigue, joint and muscle pain, cold intolerance, and breathing problems. Though accurate figures are hard to obtain, the World Health Organization estimates that there are 20 million polio survivors worldwide. Current evidence indicates that 25 to 50 percent of them are affected by PPS. What Can Be Done to Help? Researchers suggest that the old, overworked motor neuron becomes so exhausted that some of its nerve endings die, leafing many muscle fibers orphaned, once again. To slow this process, a polio survivor needs to reduce the demand on the affected muscles. Some therapists recommend assistive devices, such as canes, braces, crutches, wheelchairs, and scooters. In my case, it became necessary for me to wear braces on both of my legs and feet. I also have specially made shoes that support my ankles and help to keep me from falling. Moderate exercise and muscle stretching may also be required, depending on one’s condition. Swimming or warm-water pool therap-ies are excellent means of improving cardiovascular function without straining the muscles. It is important for the patient to cooperate with the doctor or the therapist in any exercise program. In polio survivors, repeated demands on the neurons ultimately result in the failure of some muscle fibers to work properly. Survivors may thus experience a decrease in stamina or even suffer debilitating fatigue. Loss of stamina may also result from the stress of constant pain or of dealing with a returning disability. I have found that periods of rest during the day help me recover from fatigue. Many doctors caution their patients to pace their day-to-day activities rather than push themselves to the point of exhaustion. In my case, constant joint and muscle pain has been one of the hardest things to deal with. Some may experience muscle pain particularly in those muscles that they have strained during their usual daily activities. Others experience a flu-like aching in all their muscles, along with exhaustion. Pain may lessen with anti-inflammatory or other types of medication. But despite medications, many polio survivors suffer from disabling chronic pain. Physical therapy along with heat and stretching may help. A sufferer who gave up her practice as an anesthesiologist told me, “I could get out of this wheelchair and struggle across the room, but the pain is so great, it isn’t worth it.” Now, even with medication that helps, I must frequently resort to my wheelchair. Some polio survivors have lost the ability to shunt blood away from the skin, which the body normally does to conserve heat in the muscle tissues. Without this ability, an affected limb will radiate more heat and cool down. When the muscles are cold, poor communication from the motor neuron to the muscle results, and muscles do not work properly. Thus, it is important to keep the affected muscles warm by wearing extra clothing. Some use an electric blanket or a hot-water bottle during cold nights. Avoiding exposure to cold weather helps. I found it necessary to move to a warmer climate. Breathing problems are common, especially among those with a history of bulbar polio, a form of polio that affects the spinal cord in the upper neck and thereby weakens the breathing muscles. In times past, this type of polio landed many people in an iron lung. Today, a ventilator may be used to assist weakened lung muscles. In my case, it is very hard for me to breathe when I exert myself. Therefore, every day I sue a small device to exercise my lung muscles. Survivors need to be aware of another potential difficulty. It is not advisable for them to have surgery and then return home the same day. Dr. Richard L. Bruno, of the Kessler Institute for Rehabilitation, states: ”No polio survivor should have same-day surgery for any reason, except for the most simple procedures that require only a local anesthetic.” He adds that polio survivors require twice as long to recover from the effects of any anesthetic and may need additional pain medication. Their stay in the hospital will usually be longer than that of other patients. If I had known that, I might have been spared a bout of pneumonia following a recent minor surgery. It is wise to discuss these concerns with the surgeon and the anesthesiologist before surgery. FECPPSG Editor’s Note:- I don’t agree with some of Dr. Bruno’s findings – polios are all different. I have found that no two polio survivors are the same. Having had several same-day surgeries with general anesthesia, over the last few years, and NOT having to need additional pain medication or any other problems which Dr. Bruno says that all polio survivors have, I again reiterate that ALL POLIO SURVIVORS ARE DIFFERENT and should do what they find is best for themselves. Yes, check with your doctor and the anesthesiologist – in fact, we have a special article that should be given to the anesthesiologist so, be sure to either call us, 368-676-2435, or e-mail us at bgold@iag.net, and we will send it to you. My Life Today When I was able to walk at the age of 14, I thought my problems were, for the most part, behind me. However, after many years I find myself experiencing the same problems all over again. For polio survivors like me who develop PPS, the situation is, as one writer put it, “once stricken, twice afflicted.” Of course, it is only normal to get discouraged at times. Nevertheless, I can still get around and take care of myself. I have found that the best medicine for me is to have a positive attitude, to adjust to changing circumstances as they develop, and to appreciate what I can still do. For example, when I started in the full-time Christian ministry about ten years ago, it was easier for me to get around than it is now. I was able to walk for a considerable distance before tiring or experiencing much pain. Now, however, I can only walk a very short distance. To conserve energy, I try to avoid climbing stairs and walking up hills. I use my wheelchair whenever possible. By adapting my ministry in various ways, I find it very enjoyable and even therapeutic. Yes, PPS does affect my life. It is possible that my health will worsen . But I find great comfort in the Bible’s promise of a new world in which all will be young again, with full health and mightiness. Over the years, I have often thought about the inspiring words of Isaiah 41:10: Do not be afraid, for I am with you. Do not gaze about, for I am your God. I will fortify you. I will really help you.” With God’s help, I am determined to keep going until PPS is a thing of the past. FECPPSG Editor’s Note:- As you know, we have never brought religion into this newsletter – but this particular quote is very apropos. For me, I’ve always liked FDR’s quote: “You have nothing to fear but fear itself.” That has sustained me through many trying times in my life – both polio related and non-polio related. ~*~*~*~*~*~*~ ‘Might I Have Post-Polio Syndrome?’ Most experts require some combination of the following criteria to make a diagnosis of post-polio syndrome: · A confirmed diagnosis of paralytic poliomyelitis in the past. · A period of partial or complete func-tional recovery followed by an interval (at least 15 years) of stable neurological function. · Gradual or sudden onset of muscle weakness, fatigability, muscle atrophy, or muscle and joint pain. · Possible problems breathing or swallowing. · Exclusion of other neurological, medical, and orthopedic problems. Not all polio survivors develop PPS, though as they age, they may naturally develop premature tiring and aging of overextended neural-muscle units. Furthermore, over half of polio survivors who go to their doctor with new symptoms do not have PPS. Notes one expert: “Sixty percent of polio survivors with new symptoms have a medical or neurological problem that is unrelated to polio, and that problem may be treatable. Half the remaining patients have increasing orthopedic issues related to their polio residual.” FECPPSG Editor’s Note:- We should all remember that having polio (and possibly post-polio syndrome) does not stop us from coming down with every other problem that non-polios have, i.e., heart problems, diabetes, cancer, etc. ~*~*~*~*~*~*~ Is There a Cure? Just as there is no confirmed etiology, or cause – and thus no definitive laboratory test – there is really no cure at the present time for post-polio syndrome (PPS). There is, however, treatment revolving around a three-pronged rehabilitation approach. Says one expert: “More than 80% of patients with PPS will demonstrate benefit with rehabilitation techniques.” The three approaches are: Life-style modifications 1. energy conservation 2. assistive devices 3. non-fatiguing exercise 4. staying warm Medications and supplements Though many medications, prescription as well as natural supplements, have been tried, none has been proved to help. There are many anecdotal reports of improvement, but further study is needed. Keep in mind that herbs can interact with prescription medicine, so always let your physician know what you are thinking of taking. Quality of life “The strongest medicine that a practitioner can provide to a patient with PPS is education and encouragement… Patients who were better able to make lifestyle modifications (those with better problem-solving skills, more accessible environments, more access to information and support, and a readiness to compensate with assistive devices) adapted better in their daily occupations.” Dr. Susan Perlman. ~*~*~*~*~*~*~ What are the Risk Factors? Though every case is different, the following factors may increase the risk of a polio survivor developing post-polio syndrome: · Severity of initial polio infection. Generally speaking, the more severe the initial polio, the higher the risk of PPS. · Age at initial onset. Those who got polio at a younger age are actually less likely to face PPS. FECPPSG Editor’s Note:- I disagree with this as I contracted polio at 10 months of age and have been having PPS problems for the past 15 years. Also know of many others that contracted polio between the ages of 1 year to 10 years that also have PPS difficulties. · Recovery. Surprisingly, the greater and more complete the initial recovery, the greater the chance of eventually developing PPS. · Physical activity. If a polio survivor has been in the habit of exercising to exhaustion over the years, this may increase the risk of PPS. ~*~*~*~*~*~*~ What about Exercise? Early on, recovering polio survivors were encouraged to exercise “until it hurts.” Then in the 1980’s, they were warned about the dangers of exercise, essentially about “using up” their viable muscle tissues. Today experts recommend a path midway between those two extremes. Their message now is ‘Don’t overdo it, but beware of inactivity.’ The National Center on Physical Activity and Disability says: “New knowledge tells us that no matter what our level of disability is, we should be encouraged to value exercise, enterprising enough to come up with a highly customized plan and enduring enough to reap the rewards.” On summary, an individualized exercise plan should: · Be developed in conjunction with a knowledgeable physician or physical therapist. · Start at a slow or moderate pace and progress gradually. · Include warming up before and cooling down after. · Focus on stretching and general aerobic exercises. · Include warm-water pool exercise, if available. Says one expert in The John Hopkins Medical Letter: Tiredness and pain persisting beyond an hour indicate that muscles have been overused.” So listen to your body and avoid pain, fatigue, and weakness. ************************************ In our March/April 2005 newsletter, there was an article entitled Taking a Cruise or Getting Taken for a Ride? A good friend, Bobby Gordon, sent the below article which was in The New York Times on March 1, 2005, with further coverage of the Cruise article…. Disabled Cruise Passengers Ask for Justices’ Protection By Linda Greenhouse WASHINGTON, Feb. 28 – The Supreme Court heard arguments Monday on whether the Americans With Disabilities Act applies aboard passenger ships that call at United States ports while flying foreign flags – that is to say, nearly every cruise ship that serves the United States market. The 1990 law guarantees to people with disabilities the “full and equal enjoyment” of any “place of public accommodation.” The lower federal courts disagree on whether the definition includes the floating resort hotels that are particularly popular among people with disabilities, who select cruise vacations at a higher rate than the general population. The United States Court of Appeals for the Fifth Circuit, whose jurisdiction includes the ports of New Orleans and Houston, ruled last year that the law did not apply, dismissing a suit filed against Norwegian Cruise Line by three passengers with mobility impairments and their two traveling companions. The passengers claimed that they had been charged an unjustified premium for their accommodations on the Norwegian Sea and the Norwegian Star and that public restrooms and recreational facilities, including the swimming pools, had been inaccessible. The Justice Department supported the lawsuit. The appeals court rejected the view of the Justice and Transportation Departments that the disability law applies to all cruise ships that enter United States ports, regardless of their country of registry. It is up to Congress to state clearly whether the law applies, and Congress has not done so, the Fifth Circuit said. By contrast, the United States Court of Appeals for the 11th Circuit, which includes the ports of Fort Lauderdale and Miami, reached the opposite conclusion five years ago when it reinstated a lawsuit brought by a wheelchair-using passenger against a cruise line based in the Bahamas. On Monday, Thomas C. Goldstein, arguing the appeal for the Norwegian Line’s passengers, said the Fifth Circuit had misunderstood the legal principles governing the case. The plaintiffs are seeking not extra-territorial application of United States law, Mr. Goldstein said, but rather application of that law within sovereign United States territory. His clients have been subjected to discrimination “on the land, in the ports and on the waters of the United States,” he said. David C. Frederick, arguing for Norwegian Cruise Line, warned the court against applying a “Pandora’s box of domestic legislation,” including occupational safety laws and food and drug laws, to foreign ships. Federal judges would become the “special masters of the cruise industry,” Mr. Frederick said. He said the cruise line denied the charges of discrimination, which remain untested because the case was dismissed before trial. The cruise line, with a business office in Miami, is a subsidiary of Star Cruises, based in Hong Kong, and registers its ships in the Bahamas. Arguing for the government of the Bahamas on behalf of Norwegian, another lawyer, Gregory G. Garre, said that applying the disability law to foreign ships would invite “international discord and confusion.” An assistant solicitor general, David B. Salmons, joined Mr. Goldstein in arguing for the plaintiffs. “Any vessel that comes into the waters of the United States and offers service to our residents” is covered by the Americans With Disabilities Act, Mr. Salmons said, adding that “the relevant question is whether the ship has offered a “public accommodation” in the United States.” The justices took a lively interest in the case, Spector v. Norwegian Cruise Line Ltd., No. 03-1388. But they did not appear completely satisfied with either side’s position, and it was unclear by the end of the argument what the eventual decision might be. For example, Justice Ruth Bader Ginsburg told Mr. Goldstein: “You are in effect saying, ‘The U.S. rules the world.’ No matter what the other port say, U.S. law is going to govern.” When Mr. Goldstein objected to that characterization of his argument, Justice David H. Souter rephrased Justice Ginsburg’s point. “It rules the world unless the world doesn’t want to use the U.S. as a port of call,” he said. Justice Ginsburg then took an equally stern tone with the cruise line’s lawyer. Under Norwegian’s position, she said, the public accommodations provision of the Civil Rights Act of 1964 would also be inapplicable to foreign ships, and “so a ship putting in at a U.S. port would be free to discriminate among the passengers on the basis of race.” Consistent with his legal position, Mr. Frederick, Norwegian’s lawyer, had to agree, because Congress has not clearly stated that the Civil Rights Act should apply. He tried to address the question obliquely, saying, “Congress has not extended its laws to the full extent of U.S. power.” Justice Anthony M. Kennedy was not satisfied. “We could write an opinion ruling for you but leave these other questions open?” Justice Kennedy asked in a skeptical tone. “I don’t see how we can do that.” “This concerns me,” Justice Ginsburg said. Observing that a majority of Norwegian’s cruise passengers are Americans, she continued, “You’re asking us to rule that an enterprise that is U.S.-centered is not bound by our bedrock antidiscrimination law.” When Mr. Frederick noted that compliance with the disability law on a ship could require structural modifications, Justice Antonin Scalia came to his assistance. “Why don’t you draw that line?” Justice Scalia asked, explaining that the physical requirements of the statute could provide a reason for deciding that other civil rights laws applied on board ship while the disability law did not. But Justice Sandra Day O’Connor found the reasoning unpersuasive. She noted that the disability law did not impose a blanket requirement for physical modifications, but only for those that are “readily achievable.” Whether requested changes were readily achievable could be decided later on a case-by-case basis, Justice Kennedy suggested. Although the precise question before the court was a new one for the justices, the effort to define the reach of United States law to foreign ships is decades old and has proved quite difficult. Each side on Monday could invoke an inventory of precedents to support its position. For example, a Prohibition-era decision by the justices held that in deference to United States law, foreign ships could not carry liquor when calling at United States ports, even if the liquor was kept under lock and key. More recently the Supreme Court refused in 1963 to apply federal labor law to disputes between a foreign ship and its crew, on the ground that such disputes affected only the ship’s internal management and not its behavior toward Americans. On the other hand, in a 1970 case, the court held that federal labor law covered disputes over wages paid by foreign ships to longshoremen working in American ports. FECPPSG Editor’s Note:- I will try to keep up with this court action and report it in our newsletters. If anyone reading this, finds any information before I do, PLEASE be sure to either call me (386-676-2435),or e-mail me (bgold@iag.net) so that we can advise others. ************************************ Reprinted from March/April 2005 Elder Update Importance of Calcium and Vitamin D for Older Adults Submitted by Mary Walker Dietetic Intern for the Florida Department of Elder Affairs According to the Center for Disease Control (CDC), the United States is on the brink of a longevity revolution. By the year 2030, the number of Americans age 50 and older will have more than doubled to 70 million, or one in every five Americans. Chronic diseases exact a particularly heavy health and economic burden on older adults and can lead to long-term illness, diminished quality of life and greatly increase health care costs. Although the risk of disease and disability increases with advancing age, poor health should not be an expected consequence of aging. People between 50 and 70 years of age have special nutritional needs, being aware of these needs will help in adjusting eating habits and living a healthier life. There are numerous ways to help maintain your health, chief among them are increases of calcium and vitamin D in your diet. Vitamin D and calcium are important to everyone; however, older adults require increased amounts for reasons including: · Allows for strengthening of the immune system; · Allows for better absorption of calcium from the intestines for stronger bones; · Allows the skin to make more vitamin D on its own; · Allows for more hormonal control in females due to the loss of estrogen; and · Helps to make up for nutritional depletion and increased deficiency caused by some common prescription drugs. It’s never too late to build strong bones. As individuals age, they begin to lose calcium from their bones. This loss of calcium places them at high risk for osteoporosis. Osteoporosis causes bones to break easily and take longer to heal. Vitamin D helps your body absorb calcium better; however, as one ages, the body produces less vitamin D on its own. Some new medications – such as Fosamax – help to prevent the loss of calcium from bones, but a diet including four servings of calcium-rich foods a day is still recommended. For strong bones and teeth, older adults should consume approximately 1,200 milligrams of calcium each day. Weight-bearing exercises also help to strengthen bones, so it is advisable to try walking, running, dancing or weight-lifting three to four days per week. In conclusion, data suggests that nutrients such as calcium and vitamin D – along with magnesium and phosphorus – can increase strength in lower legs, thus increasing your freedom and independence. It is very important that the older adult population be aware of how the presence of certain nutrients can improve their quality of life. For more information, please contact your healthcare provider. Source: American Dietetic Assoc. ************************************ Reprinted from March/April 2005 Elder Update Are You At Risk for Type 2 Diabetes? About 40 percent of U.S. adults ages 40 to 74 – or 41 million people – currently have pre-diabetes. This condition raises a person’s risk of developing type 2 diabetes, heart disease and stroke. Most of these people do not know they are at risk. The sixth leading cause of death, diabetes can lead to a host of serious and life-threatening complications such as heart attacks, strokes, amputations, blindness and kidney failure. The good news is that the Diabetes Prevention Program (DPP), a landmark study, proved that type 2 diabetes can be prevented by losing five to seven percent of your body weight, by eating healthy foods, and getting 30 minutes of physical activity five days a week. That is 10 to 15 pounds for a 200-pound individual. The National Diabetes Education Program (NDEP), sponsored by the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), has developed the following checklist with the risk factors for diabetes. How many of the following applies to you? · I am overweight. · I have a parent, brother or sister with diabetes. · My family background is African American; Hispanic or Latino American; American Indian or Alaska Native; Asian American or Pacific Islander. · I gave birth to at least one baby nine pounds or more or had gestational diabetes while I was pregnant. · I have been told that I have high blood pressure, or that my blood pressure is 140/90 or higher. · I have been told that my cholesterol (lipid) levels are high. · I exercise fewer than three times a week. If any of these risk factors apply to you, talk with your health care provider during your next visit about getting tested for type 2 diabetes. For more information, please visit on the Web at www.ndep.nih.gov or call 1-800-438-5383. Source: Small Steps, Big Rewards, National Diabetes Education Program. ************************************ Reprinted from March/April 2005 Elder Update Cancer Screenings and Other Medicare Preventive Services Submitted by Dawn Biss SHINE Information Specialist Early detection of diseases like cancer enables early treatment, which leads to greater success rates with treatment and recovery. In recognition of national health observances in March and April that are related to cancer awareness and control, this article provides an overview of related preventive services that are covered by Medicare. Mammograms, Pap tests, pelvic exams, colorectal screenings and prostate screenings are all tests that are covered by Medicare in order to allow for early detection of cancer. · Mammograms help detect breast cancer before detection is possible through a clinical breast exam. Medicare allows for a mammogram every 12 months for women age 40 and older who are on Medicare. Medicare also pays for a baseline mammogram for women with Medicare between the ages of 35 and 39. As breast cancer is the second most common cause of cancer death in women in the United States, and since the risk of breast cancer increases as an individual ages, this is a very important screening for a woman to have. · All women with Medicare are eligible for a Pap test and pelvic exam every 24 months. If a person is at high risk for cervical or vaginal cancer, Medicare will cover these tests once every 12 months. · Men age 50 and older who have Medicare are covered for a prostate cancer screening once every 12 months. · Men age 50 and older who have Medicare are covered for a prostate cancer screening once every 12 months. · Both men and women who receive Medicare benefits are eligible for various screening tests for colorectal cancer, which is typically found in people age 50 and older. The risk also increases as an individual ages. These tests help detect pre-cancerous polyps so that they may be removed before they turn into cancer. A fecal occult blood test is covered once every 12 months, and a flexible sigmoidoscopy once every 48 months. For persons at high risk of colorectal cancer, a screening colonoscopy is provided once every 24 months. Finally, a barium enema is covered in lieu of a colonoscopy or flexible sigmoidoscopy every 24 months for those who are at high risk of developing this type of cancer. Out-of-pocket costs for each of the screening tests described above vary depending on the test. For breast cancer screenings, the Pap test, pelvic exam and clinical breast exam, the cost is 20 percent of the Medicare approved amount with no Part B deductible. The beneficiary’s responsibility for the digital rectal exam for prostate cancer equals 20 percent of the Medicare-approved amount after the Part B deductible is met; the PSA test is covered at 100 percent. Finally, for the colorectal screenings, the Medicare beneficiary is responsible for 20 percent of the Medicare-approved amount after the Part B deductible is met. However, if the flexible sigmoidoscopy or colonoscopy is done in a hospital outpatient facility, the charge is 25 percent of the Medicare-approved amount after meeting the annual Part B deductible. In addition to cancer screenings, Medicare covers other preventive services, including flu, pneumococcal and Hepatitis B shots, glaucoma tests and diabetes supplies and self-management training for diabetes. New preventive services covered by Medicare became available January 1, 2005, as a result of the Medicare Prescription Drug, Improvement and Modernization Act of 2003 (MMA). These include a “Welcome to Medicare” physical exam and screenings for cardiovascular disease and diabetes. For more information about these services, or to speak to a SHINE counselor, please call the Florida Elder Helpline at 1-800-96-ELDER (1-800-963-5337) FECPPSG Editor’s Note:- I just had my fourth colonoscopy – results were great…. All clean inside. It’s important to have this test done. ************************************ Since vacation time is fast approaching and many of us will be staying in hotels/ motels, thought this article would be of interest. Reprinted from USA Weekend, Dec 10-12, 2004 Travel Smart How hotels pad your bill... By Everett Potter We’ve all been handed hotel bills that bear little resemblance to the nightly rate we were quoted. Here’s how to avoid being nickel-and-dimed: 1. Phone calls. Use your cell or stay at chains that woo customers with free domestic long-distance and toll-free calls. Wyndham Hotels & Resorts does this for members of its frequent-stay program. 2. Sports equipment. A kayak can run $15 an hour at the Hilton Hawaiian Village in Honolulu, plus $15 a day for a mask, fins and snorkel. Too steep? Consider an all-inclusive resort. 3. Room service. Hotels like Orlando’s Hyatt Regency Grand Cypress levy a 20% room service charge. Look before you slap on a second tip. 4. Parking. Many hotels charge big-city prices for parking. At the Campton Place Hotel in San Francisco, overnight parking is $38 plus tax. Public transit, shuttles or taxis may be cheaper. 5. Health clubs. At the Swissotel in Chicago, it’s $10 a day plus tax to use the facilities. What’s your workout worth? 6. Resort fees. At the Wigwam Resort & Golf club near Phoenix, the manda-tory resort fee is $15 per room, per night, which the hotel says covers such costs as the newspaper, health club and Internet access. Don’t like? Go elsewhere. 7. Laundry. It’s $2 to wash a shirt and $5 to press it at Boston’s Long Wharf Marriott. Try to avoid the need. 8. Early checkout. The Jekyll Island Club Hotel in Georgia levies a $75 penalty if you leave a day early. Before you reserve, ask for the hotel’s policy to avoid checkout surprises. FECPPSG Editor’s Note:- Although after reading the above, it may seem that it applies to the “able-bodied” more than to us, remember – many of us go on vacations with family and friends and, I’m sure, that the same “problems” appear at many other resort areas. ************************************ The following “recipe” was e-mailed to me by Beverly Schroll. Thanks, Bev. Recipe for How To Be a Good Friend 1 tongue that does not slander 1 heart, generous and kind 1 dash of wit 2 eyes, overlooking others faults 1 dash sunny disposition 2 ears, closed to gossip 1 mind, full of tolerance 1 large dash of smiles 2 hands extended to help others 1 dash of cheerfulness Blend together and form into one being and serve in generous portions daily to everyone you meet. ************************************ Reprinted from USA Weekend, Dec 10-12, 2004 Eat Smart Cashews deserve respect By Jean Carper Q: I eat a lot of cashews. How do they rate as a healthful nut? A: Very high, although they rarely make health headlines. Cashews have almost as much magnesium as almonds, and more zinc and selenium than most nuts. Like almonds, cashews are rich in monounsaturated fat and are apt to improve cholesterol and cut heart disease risk, says Gene Spiller, a leading researcher on nuts and director of the Health Research and Studies Center. But cashews rank far below pecans, hazelnuts, walnuts, pistachios and almonds in antioxidants, finds recent USDA research. FECPPSG Editor’s Note:- Since I’m a cashew nut lover, glad to know that they are healthy for me. ************************************ FECPPSG Editor’s Note:- The following has been e-mailed to me several times. I finally realized that it really should be in our newsletter as the advice is excellent and should be followed. I’m about ready to have new checks made and will follow this article’s input. ATTORNEY'S ADVICE - NO CHARGE Read this and make a copy for your files in case you need to refer to it someday. Maybe we should all take some of his advice! A corporate attorney sent the following out to the employees in his company. 1. The next time you order checks have only your initials (instead of first name) and last name put on them. If someone takes your checkbook, they will not know if you sign your checks with just your initials or your first name, but your bank will know how you sign your checks. 2. Do not sign the back of your credit cards. Instead, put "PHOTO ID REQUIRED". 3. When you are writing checks to pay on your credit card accounts, DO NOT put the complete account number on the "For" line. Instead, just put the last four numbers. The credit card company knows the rest of the number, and anyone who might be handling your check as it passes through all the check processing channels won't have access to it. 4. Put your work phone # on your checks instead of your home phone. If you have a PO Box use that instead of your home address. If you do not have a PO Box, use your work address. Never have your SS# printed on your checks. (DUH!) You can add it if it is necessary. But if you have it printed, anyone can get it. 5. Place the contents of your wallet on a photocopy machine. Do both sides of each license, credit card, etc. You will know what you had in your wallet and all of the account numbers and phone numbers to call and cancel. Keep the photocopy in a safe place. I also carry a photocopy of my passport when I travel either here or abroad. We've all heard horror stories about fraud that's committed on us in stealing a name, address, Social Security number, credit cards. Unfortunately, I, an attorney, have firsthand knowledge because my wallet was stolen last month. Within a week, the thieve(s) ordered an expensive monthly cell phone package, applied for a VISA credit card, had a credit line approved to buy a Gateway computer, received a PIN number from DMV to change my driving record information online, and more. But here's some critical information to limit the damage in case this happens to you or someone you know: 1. We have been told we should cancel our credit cards immediately. But the key is having the toll free numbers and your card numbers handy so you know whom to call. Keep those where you can find them. 2. File a police report immediately in the jurisdiction where your credit cards, etc., were stolen. This proves to credit providers you were diligent, and this is a first step toward an investigation (if there ever is one). But here's what is perhaps most important of all : (I never even thought to do this.) 3. Call the 3 national credit reporting organizations immediately to place a fraud alert on your name and Social Security number. I had never heard of doing that until advised by a bank that called to tell me an application for credit was made over the Internet in my name. The alert means any company that checks your credit knows your information was stolen, and they have to contact you by phone to authorize new credit. By the time I was advised to do this, almost two weeks after the theft, all the damage had been done. There are records of all the credit checks initiated by the thieves' purchases, none of which I knew about before placing the alert. Since then, no additional damage has been done, and the thieves threw my wallet away This weekend (some-one turned it in). It seems to have stopped them dead in their tracks. Now, here are the numbers you always need to contact about your wallet, etc., has been stolen: 1.) Equifax: 1-800-525-6285 2.) Experian (formerly TRW): 1-888-397-3742 3.) Trans Union: 1-800-680-7289 4.) Social Security Administration (fraud line): 1-800-269-0271 We pass along jokes on the Internet; we pass along just about everything. But if you are willing to pass this information along, it could really help someone that you care about. ************************************ Reprinted from Daytona Beach News-Journal, April 10, 2005 50 years ago, shots ended polio fear by Marilynn Marchione Associated Press Dan Wilson remembers being a frightened 5 year-old, hearing grown-ups talking about tests as he lay on a daybed in the screened porch of his central Wisconsin home in 1955. “One of the tests was whether you could lift your head off the bed,” he said. “I remember not being able to do that, and wondering what that meant.” It meant polio, one of the most feared diseases of all time. The viral illness paralyzed tens of thousands of children in the United States and half a million worldwide each year. Wilson was among the last Americans stricken. On April 12, 1955, scientists announced they had a successful vaccine. They made it without even being able to see the virus – microscopes weren’t powerful enough back then. They did it at great personal risk, without modern protective gear or fancy lab equipment. It wasn’t the first vaccine – ones for smallpox, diphtheria and the flu preceded it. But it became another “shot heard ‘round the world,” revolutionizing how people viewed science and launching a new war on germs. Scientists headed to labs with fresh enthusiasm, convinced they could brew similar magic potions against other scourges of mankind. “It seemed to say it was only a matter of time until we beat infectious diseases,” said Wilson, now a historian at Muhlenberg College in Allentown, Pa., and author of a new book about polio. Today, we have more vaccines than we did 50 years ago and more tools and knowledge to make them. But we also have more and different kinds of germs. Hubris has turned into humility in the face of failure to develop vaccines for many of them. In fact, many of the world’s top killers – AIDS, malaria, tuberculosis – got that way because there aren’t effective vaccines. Infectious diseases are still the third leading cause of death in the United States, and they kill more than 1 in 4 people worldwide. Existing vaccines aren’t panaceas either. Recent years have seen debate over resuming smallpox shots, the safety and effectiveness of other vaccines, and whether the widely used vaccine preservative thimerosal caused health problems. The most common vaccine of all – the annual flu shot – is under intense scrutiny. Issues include the antiquated way it is made, a fragile supply system, worries about the threat of a pandemic, and research suggesting it might not help as much as had been believed. Vaccines also are about money as much as medicine, sharply dividing the haves and have-nots. The world’s richest man, Microsoft founder Bill Gates, has donated a staggering $1.5 billion for immunizations in poor countries, where more than 2 million children die each year of diseases largely vanquished from the United States. Even the polio vaccine is only a partial success story. Officials have been unable to rid the world of “the Great Crippler” as they once did smallpox, and many doubt they ever will. Despite these problems, vaccines clearly have changed the world and saved millions of lives. The challenge now isn’t just developing new ones, but also getting parents to accept existing ones, said Dr. Neal Halsey, director of the Institute for Vaccine Safety in Baltimore. “Here at Johns Hopkins Hospital,” Halsey said, “we have a child who is basically on a ventilator and has severe pertussis. The child is lucky to have lived, almost died. We have another child with meningitis that could possibly have been prevented by a vaccine. I have seen children with all of the diseases that we currently protect against with vaccines. Once you have seen children die from those diseases, you want to do what you can to help prevent other children from dying, and vaccines are our best tool to do that.” ~*~*~*~*~*~*~ Salk took all credit; other scientists bitter by Dan Nephin Associated Press PITTSBURGH – The vaccine bears his name, but Jonas Salk had plenty of help in the victory over polio, and his legacy includes researchers bitterly disappoint-ed that he denied them their share of the glory. At a packed news conference 50 years ago April 12, Salk’s former teacher and mentor at the University of Michigan, Dr. Thomas Francis, declared that the vaccine was “safe, effective and potent.” Francis had led crucial field tests of it using scientific methods that were uncommonly exquisite at that time. The vaccine was 70 percent effective against the main polio strain and 90 percent against two others, he reported. That infuriated Salk, a diminutive, sharp-tongued man “who felt compelled to insist that he had created nothing less than the perfect vaccine,” Dr. Howard Markel wrote in an article in the April 7 New England Journal of Medicine. Markel is director of the University of Michigan’s Center for the History of Medicine. Salk then attacked Francis’ findings and insisted his potion might have been 100 percent effective if the government hadn’t insisted on adding an antiseptic to it. He never mentioned all the work done by colleagues at the University of Pittsburgh, who sat dumbfounded in the audience. Nor did he credit Harvard researchers John Enders, Frederick Robbins and Thomas Weller, who enabled found a way to mass-produce the vaccine by growing it in monkey kidney tissue. “He wasn’t very generous in acknowledging his co-workers, or to put it in the most kind fashion,” said Dr. Julius S. Youngner, who worked with Salk in Pittsburgh and is the only surviving scientist of the core research team. “He made the world think that he had done it all by himself and made everyone else anonymous.” Salk’s demeanor embittered Youngner so much that he left the team in 1957 and told off Salk when Salk returned to Pittsburgh for a portrait unveiling in 1993. While at Michigan during World War II, Salk and Francis had developed a killed virus vaccine against influenza. In 1947, Salk was recruited by Pittsburgh to establish a virus research program. He believed that a killed-virus vaccine could also be successful against polio, but most scientists supported a rival, Albert Sabin, who was pursuing a live-virus vaccine that could be given orally, said David M. Oshinsky, author of “Polio: An American Story.” The March of Dimes funded both, creating “a very tense atmosphere,” Oshinsky said. In the end, both men were successful. Salk’s vaccine carries no risk that the virus could mutate back into an infectious form; Sabin’s, which came out seven years later, has been easier to use in developing countries. The two were bitter enemies to their deaths – Sabin in 1993, and Salk in 1995. FECPPSG Editor’s Note:- My oldest child, BariLynn, was born in 1957 – at that time the smallpox vaccine was the first vaccination that children were given. When I took her in for her first “shots”, I requested that the doctor (an older man – about mid-40’s) told me ”that children were immune until they were one year old.” When I told him that I had contracted polio at 10 months of age and BariLynn’s father at 7 months of age, he called the Brooklyn (NY) Board of Health and they told him to be sure to give BariLynn the polio shot. ************************************ Here’s another little missive that came to us through several e-mails. Somedays, I must admit, I feel just like this car… Barbara If My Body Were A Car If My Body Were A Car..... If my body were a car, this is the time I would be thinking about trading it in for a newer model. I've got bumps and dents and scratches in my finish and my paint job is getting a little dull, but that's not the worst of it. My fenders are too wide to be considered stylish. They were once as sleek as a little MG; now they look more like an old Buick. My seat cushions have split open at the seams. My seats are sagging. Seat belts? I gave up all belts when Krispy Cremes opened a shop in my neighborhood! Air bags? Forget it. The only bags I have these days are under my eyes -- not counting the saddlebags, of course. I have soooooo many miles on my odometer. Sure, I've been many places and seen many things, but when's the last time an appraiser factored life experiences against depreciation? My headlights are out of focus and it's especially hard to see things up close. My traction is not as graceful as it once was. I slip and slide and skid and bump into things even in the best of weather. My whitewalls are stained with varicose veins. It takes me hours to reach my maximum speed. My fuel rate burns inefficiently. But here's the worst of it - almost every time I sneeze, cough or sputter..... my radiator leaks! ************************************ DUES FOR 2005:- Please take a look at your mailing label - on it you’ll see the month and year we received your 2004 dues, i.e., 01/2004 means it was received in January 2004, so your 2005 dues was due in January 2005. If your mailing label has the year first and then the month, i.e., 2004/01 it means that you indicated to us in January 2004 that you wanted to receive the newsletter but paid no dues. That’s OK as we still believe that anyone who wants information should receive it – but we do need you to return the tear sheet with either the “Dues” box checked or the “Keep me on the Mailing List” box checked. Your dues covers the supplies we need to send out the information packets to all inquiring about Post-Polio Syndrome, any other correspondence we do, and postage for publicity and for the out-of-country (25) newsletters that we send out. We’re fortunate in that the “Free Matter for the Blind and Physically Handicapped” status takes care of the postage for the over 450 newsletters sent out within the United States. We network with approximately 60 other support groups throughout the United States, Canada, Australia and New Zealand – some 40 of these reciprocate by sending us their newsletters. We receive as many dues checks from our out-of-state members as we do from our Florida members. So, please check your mailing label and return the tear sheet if your date is due. We really need your support now more than ever. Just to keep you advised, in addition to the previously mentioned countries, our newsletter goes to England, France, Germany, Israel, Panama, Portugal, Lebanon, South Africa, Sweden, Taiwan and Wales. *********** WHEN YOU MOVE PLEASE be sure to send us your new address. Sometimes the post-office will return the newsletter to us with a “forwarding period expired” notice on the front with your new address but most of the time they are just returned to us with “address unknown” on it. SO, if you want to continue receiving the newsletter it is UP TO YOU to make sure we have your new address. ************************************ CALENDAR WATCH Post Polio Health International – (formerly GINI) will be hosting their Ninth International Conference on Post-Polio Health and Ventilator-Assisted Living, June 2-4, 2005 in St. Louis, MO. For further information call 314-534-0475 or e-mail at info@post-polio.org. ************************************ Here’s another e-mail goodie. Many thanks to all my e-mail friends for sending such “interesting” items to us. CONSPIRACY!!!! Have you noticed that stairs are getting steeper. Groceries are heavier. And, everything is farther away… Yesterday I walked to the corner and I was dumb-founded to discover how long our street had become! And, you know, people are less considerate now, especially the young ones. They speak in whispers all the time! If you ask them to speak up they just keep repeating themselves, endlessly mouthing the same silent message until they’re red in the face! What do they think I am, a lip reader? I also think they are much younger than I was at the same age. On the other hand, people my own age are so much older than I am. I ran into an old friend the other day and she has aged so much that she didn’t even recognize me. I got to thinking about the poor dear while I was combing my hair this morning, and in so doing, I glanced at my own reflection…… Well, REALLY NOW – even mirrors are not made the way they used to be!! Another thing, everyone drives so fast these days! You’re risking life and limb if you happen to pull onto the freeway in front of them. All I can say is, their brakes must wear out awfully fast, the way I see them screech and swerve in my rear view mirror. Clothing manufacturers are less civilized these days. Why else would they suddenly start labeling a size 10 or 12 dress as 18 or 20? Do they think no one notices that these things no longer fit around the waist, hips, thighs, and bosom? The people who make bathroom scales are pulling the same prank, but in reverse. Do they think I actually “believe” the number I see on that dial? HA! I would never let myself weigh that much! Just who do these people think they’re fooling? I’d like to call up someone in authority to report what’s going on – but the telephone company is in on the conspiracy too: they’ve printed the phone books in such small type that no one could ever find a number in there! All I can do is pass along this warning” We are under attack! Unless something drastic happens, pretty soon, everyone will have to suffer these awful indignities. PLEASE PASS THIS ON TO EVERYONE YOU KNOW AS SOON AS POSSIBLE SO WE CAN GET THIS CONSPIRACY STOPPED!!! ************************************ Reprinted from Southeast Michigan Post-Polio Support Group, April 2005 Q:- My physician just told me I couldn’t have post-polio syndrome because I have the knee jerk reflex. What is the knee jerk reflex and is he correct? A:- The knee jerk reflex is the sudden kicking movement of the lower leg in response to a sharp tap on the patellar tendon, which lies just below the kneecap. A knee jerk is a normal reflex which requires an intact nerve loop between the sensory nerve which detects the “tap” at the quadriceps tendon below the kneecap, and an intact motor nerve in the spinal cord that sends the reflexive message to the quadriceps muscle to contract and straighten out the knee which a kicking movement. If polio survivors had involvement of the quadriceps muscle, they usually lost the knee jerk, if they had no lower limb involvement, or specifically quadri-ceps involvement, then the knee jerk was not lost. Consequently, you cannot use a single test, like a knee jerk, as indicating the presence or absence of polio involvement overall – or of post-polio syndrome. All that can be said is that if it is absent in a polio survivor, probably that person had involvement of the quadriceps muscle, the muscle that straightens out the knee. Frederick M. Maynard, MD, Upper Peninsula Rehabilitation Associates, Marquette, Michigan