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FLORIDA EAST COAST POST-POLIO SUPPORT GROUP
THE LATE EFFECTS
POLIO: A SECOND STRIKE
Polio – a word from the past, describing a virus that few people fear today. But during the epidemics of the 30’s, 40’s, and 50’s, Polio swept through the world, attacking human nerve cells, causing muscular weakness and paralysis.
We, the polio survivors, have worked hard to lead productive lives, all the while assuming that with exercise and proper care we could at least maintain our status-quo. In fact, many of us went on with our lives as though we never had polio, and some never told anyone (even their spouses) that they were polio survivors. They were the “lucky” ones – those who had the non-paralytic strain.
Those of us who could stand without crutches thought the worst was over. Those of us who could work believed our stamina would see us through each day. Those of us who were strong enough to lift ourselves into wheelchairs thought we were independent. Those of us who could breathe easily thought we had escaped the respirators, the iron lungs.
Physicians are now seeing an increasing number of us who are beset by new problems. Possibly 75 percent of the estimated 1.6 million Polio survivors are experiencing the progressive debilitating after-effects, called “Post-Polio Syndrome,” “Post-Polio Muscular Atrophy,” or “Post-Polio Sequelae.”
At first doctors thought that the explanations were simple. However, over time it has become clearer that the explanations and remedies are yet to be found. Some research is being done but more is needed.
Unfortunately, the late effects of Polio are still not well known among many physicians. Survivors who develop these new problems may be told:
¨ you’re getting older;
¨ it’s arthritis;
¨ lose a little weight;
¨ you can’t have pain in all those places;
and worst of all
¨ it’s all in your head.
We’re given inappropriate prescriptions, or sent for expensive referrals. A frequent complaint is that our physicians do not listen to us.
As a first step in treatment, the Polio survivor should undergo a general medical evaluation so that there is a basis from which to judge if there are late effects. If old records can be located they may aid physicians in determining the changes that are occurring.
Early recognition, corrective procedures, and increased use of assistive devices can do much to alleviate pain and distress. A new brace may be needed (or you may need to go back into a brace after the hard-won battle to walk without one). Perhaps current crutches are damaging the arms or wrists – the arms may be wearing out from propelling a manual wheelchair. Now may be the time for you to switch to an electric wheelchair or to one of the three or four-wheeled motorized scooters. This will make it much easier for you to do your everyday shopping, other activities, and to enjoy life.
Most Polio survivors have been pushing way beyond their actual strength, trying too hard, refusing to give in or even to acknowledge any weakness for many years. These are things we were taught were positive things to do in order to compensate or overcome our Polio residuals. Now we find that we have been over-compensating, over-achieving, possibly even over-medicating, (and very likely over-eating) which could lead to other problems. The old “No Pain – No Gain” rule has been changed to “Preserve It and Conserve It.” We’re now told to listen to our bodies and to stop when it hurts.
Since the middle 1950’s, after the virtual eradication of Polio in the United States, thanks to the vaccines of Dr. Jonas Salk and Dr. Albert Sabin, national efforts were redirected toward helping victims of other illnesses. In fact, we, the Polio survivor, have been all but forgotten. It is difficult today to find a physician who has had any education (other than a paragraph in a medical textbook), or who possesses any hands-on knowledge with Polio. Many Polio survivors are unaware of the multitude of other polios who are feeling the very same symptoms of Post-Polio Syndrome that they are experiencing.
It was for this very reason that a support group for Polio survivors in the Volusia/Flagler area was founded in June 1993.
· Unaccustomed fatigue – either muscle fatigue or a generalized body fatigue.
· Weakness in muscles -- both those originally affected and those thought to be unaffected.
· Pain in muscles and/or joints -- muscle burning/jumping (jitters) cramping.
· Sleeping disorders -- exhausted upon awakening, headaches, feeling confused first thing in the morning, waking up several times during the night.
· Breathing difficulties, breathlessness with speech, difficulties with swallowing.
· Dizziness, frequent headaches.
· Intolerance to cold.
LIFE CHANGING EFFECTS OF
· New or extended use of braces, crutches, wheelchairs, motorized scooters, respirators, and electrically operated beds.
· Decreased endurance.
· Participation in fewer activities.
· New or longer rest periods.
· Situational anxiety/depression.
· Increased dependence on family, friends or attendants.
PURPOSES AND GOALS
§ That each and every polio survivor, family member, health professional and interested others be made aware of the support group and that anyone who wants information about Post-Polio Syndrome shall receive same. No one shall be denied information.
§ To reach out and educate the medical profession and to encourage the formation of Post-Polio Clinics in the Volusia/Flagler area to evaluate, diagnose and treat Post-Polio Syndrome.
§ That government agencies (county, state and federal) be made aware of the need for both Polio and Post-Polio education, clinics and research in Post-Polio Syndrome.
§ That government agencies (county, state and federal) be made aware of the need for accessibility for the physically challenged as outlined in the Americans with Disabilities Act enacted by Congress.
late 1994 two Post-Polio Clinics opened up in
The Florida East Coast Post-Polio Support Group meets five (5) times a year – January, March, May, September and November. We discuss many Post-Polio related problems, share possible ways to deal with those problems, and to encourage each other. We also invite health-care providers and other health professionals as speakers, adding to our knowledge on ways to help ourselves.
There is a worldwide network of polio survivors who share information concerning research, new equipment being developed, and new bracing techniques. We also keep track of conferences that give Polio survivors the chance to meet with each other and with knowledgeable health professionals. These conferences give us a chance to feel less alone knowing that there are others experiencing the same symptoms and problems.
FOR FURTHER INFORMATION
On how to participate in the support group, or how to receive our newsletter and other polio related information, or to find out when our next meeting is scheduled, just
CALL or WRITE
12 Eclipse Trail
Post-Polio Health International
Including International Ventilator Users Network
314 534-0475 -- 314 534-5070 fax