POLIO SURVIVOR'S GROUP OF WESTERN NEW YORK NEWSLETTER APRIL 1994 Duplicated and distributed by the March of Dimes Birth Defects Foundation whose invaluable help is gratefully acknowledged. Attending the March meeting were: Don O'Connor, Henry Maciejewski, Joan Curly, Terry & Dick Bouquin, Bill Kroll, Bill and Barbara Woodworth, Phyllis & Hugh Kennedy, and Pat & David Hamilton. Treasurer, Henry Maciejewski, reported that we have $2455.41 in the checking account, $1360.26 in the CD, and $57.15 in the split club. Speaking at the April meeting will be Don O'Connor who will review a book published by Ranchos Los Amigos on aging with a disability. In May, 1993 Medicare agreed to pay for influenza vaccine and its administration. (Flu is a dangerous menace to Post Polios.) You will want to keep-up-to-date on where and when these shots will be available in 1994. Also, if you have ever received immununization for Pneumonia (another serious threat) you may want to check with your doctor about it. Get a diagnosis of Post Polio Syndrome on your medical records. You may need this appraisal to apply for Social Security Dissability. (Courtesy of Just Us Polio Support Group of Southern Tier N.Y.) A summary from A Total Biography on Polio by Dr. Rolf Kiessig (Courtesy PPAS News, BC) ``Sequelae are organized by a whole complex of different symptoms, so how do these symptoms express themselves individually? (The presupposition is that the afflicted did actually have polio at an earlier time.) This is particularly important for the doctor to know because many of the newly emerging symptoms can easily be mistaken for for a normal overuse or aging, and a diagnosis of the differences can become rather difficult. Periods of late-appearing symptoms can be between five and forty years from the start of acute illness. The symptoms can also appear in patients who suffered the paralytic form of polio and therefore the viral infection but who came out without an actual paralysis. It oftens happens that the original less affected limbs are now affected - which leads to a necessary changed lifestyle. ONE CAN DIVIDE THE SEQUELAE THUS: 1. General loss in strength and the ability to persevere. a. Loss of activities which particularly demand strength. b. Unussual difficulties which make daily coping just too much. c. Very long fatigue periods and extended recovery after exertion. d. Total fatigue and exhaustion which doesn't necessarily have to be connected with the present activities. e. Difficulties of recovery after ilness and/or surgery. 2. Symptoms regarding musculoskeletal systems. a. Increasing suffering of muscles and atrophy of previously normal. b. Previously stable joints that can no longer be depended upon, e.g., dropped foot (ed. a leg which gives out suddenly). c. Muscle or joint pain. d. Changes in the way one walks, and body posture connected with this uncertainty and falling. 3. Temporary or permanent difficulties with breathing. a. Out of breath after the least amount of exertion. b. Spontaneous complaints about breathing. c. Frequent infections of the respritory tract. d. Sleep apnea (short periods of non-breathing during sleep) which results in a shortage of oxygen supply to the blood (causing morning headaches, difficulty concentrating, disturbances of memory, mental confusion, irritability, nightmares, or other disturbances (ed. sweating). e. Difficulties in the awakening stage after anesthetics. (This should be carefully appraised. Anesthetics can be particularly dangerous to a Post Polio.) 4. Symptoms can be influenced by one or more causes; a. Overall weakening of the general musculature and diaphragm. b. Decreased vital capacity resulting in decreased tidal air (breathing volume). c. Central disturbances of breathing control. d. Hampering of normal mucous production leading to massing of phlegm and difficulties in coughing it out. e. Distention of the abdomen causing flatulence. f. Scoliosis (vertebrate column becomes misshapen). This can cause difficulties with digestion due to visceral displacement, leading either to constipation, diarrhea and diverticulosis. 5. Complaints of swallowing and difficulties with speech. (ed. including projection.) The above mentioned symptoms, of course, do not all occur together but can frequently be observed as combinations of single symptoms. It is difficult for the doctor to distinguish them from normal wear and tear and aging. Nevertheless one can not attribute to `aging' these symptoms in a 45-year old. Unfortunately the doctors as well as auxiliary medical personnel toady lack the knowledge and experience of the polio sequelae and this must be laboriously relearned. We (the involved, concerned survivors) can help in contributing to these professionals.'' (Translation by Alina Radlich for PPASS, BC Canada Permission by Doris Benedict, JUST US Publication Southern Tier Polio Support Group, N.Y.) Our next meeting will be on April 20, at St. Stephens's Bethlehem United Church of Christ, Wherle near Union, at 7:15 P.M. Nominations for officers will be accepted for the 94-95 year. Please try to attend. The Sixth International Post-Polio and Independent Living Conference, St. Louis Marriott Pavillion Hotel, St. Louis, MO June 16-19. Contact Joan L. Headley, International Polio Network, 5100 Oakland Ave., #206, ST. Louis, Missouri 63110-1406 (Telphone 314.534.0475). MEDICARE If you have difficulty getting Medicare coverage on equipment etc., remember it is generally their policy to refuse payment. Resubmit your claim. Always ask that your physician write a _detailed_ perscription. Detail is important! If the claim is again refused, ask that the Medicare review board re-judge your claim. Don't give up if you believe your claim is legitimate. Write your congressman if necessary. Have all communications Xeroxed, record the names of the people you speak with on the telephone.