Fifty-three years ago, when I was four years old, I almost died from polio. During the acute phase, I could only move one finger.
The rest of me was completely paralyzed. Back in the s that disease was certainly spectacular. Or it left its permanent trademark on so many of us. Polio left me using two leg braces, a pair of crutches and a back brace.
My struggles when growing up with a disability were certainly continuous. Back in the s, she taught me that my attitude about polio was much more important than its physical effects on me. The power of self-determination and social support far out-weighed the power of disability. In fact, we as polio survivors must gratefully celebrate today the astounding amount of social support we received from a fully energized s American community that wanted to save our lives, help us breathe and walk again and succeed in life in unprecedented ways.
Because rehabilitation and eradication efforts were so effective, for thirty years polio survivors blended into society. Polio was so horrible that nobody anywhere in our nation really wanted to think about it anymore, especially those of us who had it. I went to school and started a professional career. The disease was gone, and collectively those of us who had polio were also gone from the national consciousness—almost like medical dinosaurs, fading phantoms of a past era.
Everybody waved good-bye to the phantoms as we all went on with life. But then 22 years ago, when I was years old, once again spectacular polio returned to leave an unwelcome trademark. Debilitating new pain, weakness and fatigue forced me into a whole new series of health care system expeditions.
After seeing five different doctors it was concluded here at the University of Michigan Post-Polio Clinic that I had what is now known as the post-polio syndrome. These post-polio symptoms affect half a million polio survivors today in the U. Now I need to use a wheelchair more often. The fear, alarm, sadness and rage I felt at having to fight polio once again are characteristic emotions shared by polio survivors across the country as they too have faced greater disability after 30 years of physical stability.
We felt betrayed by childhood physicians who unknowingly told us that not much would change as we grew into our late life years. So we all had to quickly adapt to these unexpected new issues—health care providers, policy makers, medical researchers, polio survivors, their families and friends. And we continue to do so today. The World Health Organization estimates there are up to 20,, survivors of poliomyelitis in the world right now.
We are the second largest disability group in our country next to those who have had a stroke. Because of our history and our large numbers the struggles we have encountered with our physical losses have paved the way for a variety of scientific and social advances.
Thousands of children with polio needed rehabilitation in the s. In the s the disability rights and independent living movement leading to the passage of the Americans with Disabilities Act started at the instigation of several polio survivors including Ed Roberts and Judy Heumann. They knew our society could do better at addressing the environmental and attitudinal barriers toward disability that were truly handicapping a significant portion of our population, in fact, when you think about it, all of our population.
They taught me that not only was my attitude important, but breaking down the external barriers in our communities is absolutely imperative. In the s the vigorous grassroots movement to address the disabling late effects of polio was energized by thousands of polio survivors in partnership with their health care professionals.
Out of this sociopolitical movement, emerged the now twenty-five year old organization for polio survivors and their health care professionals called Post-Polio Health International. Groups like PHI have promoted networking, advocacy, education and new scientific research that have stimulated the way we think about neuromuscular disease. Because of this, new medical management techniques have been adopted to prudently help those who are facing progressive disability or fast-track aging from a variety of neuromuscular impairments such as spinal cord injury, cerebral palsy or spina bifida.
This post-polio movement will help many people who have similar disabilities in generations to come. These programs enlarge and honor the disability paradigm to view people with a wide range of disabilities not as objects but as ingenious producers of knowledge whose common history has generated a wide and rich variety of art, music, literature, and science that happens to be infused with the experience of disability.
As we celebrate the annihilation of the disease called polio today, we recognize that there is much left to be done. With the large generation of aging polio survivors at the forefront, public policy makers need to address many other instrumental needs of polio survivors.
These include the new early retirement requirements of adults who will be aging with a lifelong disability, which will also help so many baby boomers who are aging into a disability. We cannot let our social security system collapse. Medicare and Medicaid need to get stronger.
Issues of health insurance coverage for personal assistance, health and wellness activities, long-term health care and assistive technologies are important to address.
Housing and transportation opportunities need to become more affordable and accessible. These are all public health issues that need to be addressed in public policy arenas and the private sector through organizations like March of Dimes and Rotary International. Let us celebrate the fact that huge numbers of us who have been living with the effects of polio for over fifty years have quietly figured out how to thrive and make substantial social and political contributions in a non-disabled world.
We also recall the luminosity of Franklin D. Getting polio is mostly a thing of the past, thank goodness, but we who had polio are alive and have been here all this time! We are with you! Now that our average age is about 65 years, as we look back, we know that we have experienced the issues and challenges of physical disability with a longevity and fullness never before known in the history of mankind.
I believe that we as polio survivors have within us, both individually and collectively, a wealth of knowledge and insight that can help others grow and flourish. We still have so much to contribute, which, thanks to the ongoing compassion and concern of all of us…we will do. Her bright blue-eyed pre-kindergarten daughter lie flaccid in a hospital bed, almost completely paralyzed from polio. Now 60 years ago, that horrifying summer polio epidemic had swooped this young family into its vile clutches, never to fully let go during their generation.
Devastated, Marj, her husband, Art, and their toddling one-year old son, Scotty somehow got a ride back and forth to the urban acute care hospital every day to see Sunny. Throughout their frightening earliest bedside visits, they knew death loomed all around. Children with polio were dying in the beds nearby. Would their firstborn little girl live or would she die with the others? Sunny will be okay.
The doctors say she will need about nine months of rehabilitation now, likely followed by several orthopedic surgeries and years of physical therapy. But she has survived! What would make you feel better? A cuddly and cheerful bed-friend with a music box inside to hold close and sing to her in this humorless hospital. Do you believe in miracles? I have seen miracles, felt the presence of encouraging and comforting angels and have encountered many spiritual inspirations. They are often what helped me get through my tough lifelong encounters with polio.
Marj left the hospital that afternoon determined to make Sunny a singing bunny. She found a stuffed toy rabbit at home in a box of playthings. She figured out that she could snip a slit in the fabric, dig out a little filling, and then find a small music box to sew into the bunny. But in searching through all the toys, she found no music box anywhere in the house. So, determined to get to the shops before they closed, she swooped Scotty up, lowered him into his baby stroller and bustled half a mile downtown to buy a music box.
Sunny must have a singing bunny! But after searching the shelves and inquiring in every promising shop downtown, she was left bereft. What could she do now? And this mama knew that right now, a singing bunny could be the one special buddy Sunny needed to keep her company through the grueling months of stinky hot packs, painstaking physical therapy and learning to walk all over again with orthopedic braces and crutches.
Bewildered, Marj plodded along the sidewalk toward home, mindlessly steering her son straight ahead in the baby stroller. Suddenly a sparkle in the grass caught her glimpse. It was a little music box that someone must have been dropped or thrown away. Amazed and delighted, she snatched it up and wound it up. Dingling a tune, it worked! Racing home, Marj washed the newfound treasure off and carefully stitched it into the awaiting stuffed rabbit.
Together Marj and Art delivered the new singing bunny to Sunny the next day. And that bunny stayed close and served its purpose as part of the family for years to come. She taught me that there are unexplainable events in our lives that help us get through. And just as Mom shared her account with me, I believe that we may very seriously want to consider sharing our life experiences with the children and grandchildren in our lives.
Who we are and what we have experienced in life can offer young people a sense of their genetic heritage: Recording our life experiences might be a wonderful project to do in our support groups. Together we can begin to encourage one another to document our personal stories either in writing, on audiotape or DVD. Each person might write a comprehensive memoir or just one or two short stories.
The support group could invite a guest professor from a local college to help members learn about how to write effective memoirs or successfully record oral histories.
The group also might want to engage a local media specialist to help certain members create quality DVD recordings. Support group members could choose to compose short autobiographical stories that teach life lessons or illustrate personal values. We could document individual experiences about overcoming the odds or taking risks that either paid off or failed. We could tell about the role of people we encountered throughout life that either helped us succeed or who were desperately difficult and discouraging.
We could write at home, and then bring the stories to group meetings to share--even engaging each other to constructively critique the writings for diction and syntax.
As polio survivors, we have a rich legacy to leave. We have experienced life from a unique and important perspective. Please don't notice only our disabilities.
They are the first thing that you see, but they are not the most important thing there is to know about us. We hope that when you see us you will say to yourself, "Here's somebody like me, who may have some abilities, interests or aspirations similar to mine. I wonder if there is anything I can do to help keep the disability from standing in the way of their realizations. Please don't exaggerate our disabilities or suppose we're all alike.
People have shouted at me as though I were also deaf and talked to me like a child as though I had never grown up. Or, because I'm in a wheelchair like their grandfather who just died, they think they know all about me.
We hope that you will think when you see us, "Here is somebody who has something interesting to say if I will stop and listen. And something interesting to do if I'll give him or her the chance. Please don't think of us only as people who cannot do things.
We are just people who cannot do some things the regular way. I cannot walk from here to there, but with a good wheelchair I can still go from here to there.
A blind person cannot see the words in a book, but with Braille can read the book. We hope that when you see us you will not say to yourself, "How sad that this person can't do the things I like to do or go the places I like to go or work where I do. What kind of training or special equipment or ramps are needed, so that he or she can also do the things I like to do or go the places I like to go or work where I work?
Please don't deny our disabilities or treat them lightly. They are something very real to us with serious, permanent effects on our lives. We hope that you too will acknowledge the difficulties we face and pitch in to help us remove the barriers and problems. If we are discouraged, encourage us not by distracting us to think of something else but by showing us practical ways of coping. Please feel with us our grief and anger and frustration.
Often the best way of handling such feelings is to get them out in the open where they can dissipate. Don't take as personal insult or rejection what we might say or do in your presence on such occasions. Instead of just telling us to shut up or to cool it, show us you understand and empathize with our point of view.
But if we persist in bemoaning our losses, make your encouragement practical. Point out to us all the things we can do. Help us find a goal for our lives that appeals to us and which we can attain even with our disabilities. Then as our friend show us how to reach that goal. Please don't think that we are all inferior and depressed and would rather stay with our own kind. Sometimes this is true, but if we manifest fear or hesitation or distrust or believe that we cannot do a lot of things, it is usually the result of bitter experience.
Some people stare at us, avoid us, laugh at us, pity us, overprotect us. Everywhere we meet barriers. We have learned inferiority from being relegated to inferior status. What we hope for from you, therefore, is positive regard and feedback. We will more readily learn to value ourselves the more we experience you valuing us, accepting us as friends and associates, and providing us opportunities for participation, self-expression, growing and giving.
Please don't pity us. Disclosing horror or sadness at our situation only makes us feel worse. We need solutions not commiseration. Show us you believe these obstacles can be overcome. Show confidence that we can still lead wonderful, full lives.
Don't deny the hard work or the difficulties that lie ahead of us, just help us move forward. Please don't be afraid to notice our disabilities or ask questions, but do it right.
Curiosity is not always bad, since asking each other questions is one of the best ways that friends have of getting to know each other. So look at us, ask all the questions you want, but just don't treat us like animals in a zoo without feelings. It is degrading when people pay all their attention to our wheelchairs, caring nothing about ' When you look and speak, do so in a way that shows respect for us as persons and interest in us as potential friends.
And don't forget to give us a chance to know something about you, too. Please don't make decisions for us or tell us what we should do. What we are and wish to do should not be defined by our disabilities but by the nature of our particular abilities, interests, aptitudes and ambitions. We may even need to be cautioned if we want to bite off more than we can chew, but remember, it is the size of my mouth and not yours that determines how much I can chew.
Please offer us help if you see that we need it. Please ask first whether the assistance is wanted; then ask how the help should be given.
Do it as inconspicuously as possible. You may want the whole world to see that you are doing your good deed for the day, but we would rather no one noticed that we could not do things for ourselves.
Please be patient with us and fair. We people with disabilities are not perfect, nor always on our best behavior. In this, unfortunately, we are all too normal. Like everyone else, we are sometimes in the dumps and sometimes on cloud nine; sometimes lazy, demanding help we really don't need; sometimes stubborn, refusing even the assistance we do need; sometimes friendly, sometimes hostile; sometimes placid, sometimes angry. We do not ask you to ignore our faults.
We should be accountable for our actions like everyone else. But at least show us as much tolerance for our short-comings as you show your other friends and colleagues for theirs. Please don't tell us how wonderful we are because we smile so bravely or try so hard. In the first place, we already know it, having been told so a million times before. In the second place, this is actually rather discouraging. Here we are just trying to do the ordinary things every one else does all the time and someone gushes over us as if it were something extraordinary.
This tells us the person really thinks our disabilities are awful and our capabilities low. Yes, we do have to try harder. Yes, we do deserve credit for the extra efforts we have to make, but we would much rather have you pitch in and help us reach the rest of our goals than just applaud what we have already achieved.
Please don't tell us we are already doing enough or to stop trying so hard. It makes some people uncomfortable to see us struggling with our wheelchairs or assistive devices or they want us to accept our disabled lot quietly, graciously submitting to the status of being served instead of trying to serve. Perhaps some of us have reached the limits of our capabilities or are content to maintain our present positions, but the decision when to stop should be ours, not yours.
Many of us still have abilities and inner resources we want to develop and use, even if it is going to be difficult. Disability does not take away our right to pursue the full development of our potentials. Instead of preparing us a comfortable place to rest at the bottom of the stairs, we would rather you help us find a way to get up the stairs to where the action is.
When I complain to my doctor about pain or fatigue, he usually tells me that I am not getting enough rest. I was told when I was first diagnosed not to do anything to cause pain or fatigue because I may cause more damage to my nerves and muscles. But exercise is encouraged…so you have to find the level of activity that is best for you.
Any activity that involves using my arms or hands without rest for short periods of time, such as: Did I say just breathing makes me hurt and causes fatigue? I know I did. That would have been almost unthinkable to me way back when I first heard I had post-polio syndrome. Now I have to use my Bi-PAP at night to do the breathing for me so I can breathe unassisted during the day without pain in my chest. It feels like your body must weigh pounds!
You may be hungry, but the thought of moving one muscle to get food is just way too much! The pain is in every muscle: At times I have been way too tired to even talk. I can describe it more in miles than anything else. Ten years ago, I could easily drive my mother to one of her doctors near the hospital, which is about 20 miles from my home. We could have a nice lunch, and stop and shop at a couple of stores while we were out that day.
Mama walked, and I used my wheelchair. She had to change one of her doctors because we needed one that was closer to us. I can drive to the library, which is seven miles.
I can only handle about two stops in a day, one if it is somewhere like Wal-Mart or a doctor where I have to wait. The next day I almost always require total rest. I now belong to a sister church which is only two miles away. I can attend many more things and am not as shut in because of its proximity to my home.
I often have to rest after I shower and rest again after I dress. This is my life. My doctor said that he wishes that more of his patients knew how to pace themselves like I do. Post-polio has caused many other problems with my nerves, muscles and joints and I hurt somewhere all of the time.
We have an on-going feud about this. I feel that pain is an indicator that something is wrong. I usually know what it was and adjust accordingly. For me, as a general rule of thumb, I need about twice the amount of time to recuperate from something I did to cause pain or fatigue. Lunch out, a little shopping and a movie with my husband driving my van will cause me to have to stay in bed most of the next morning.
I will not discuss pain medication here because different things work for different people and no two people are alike. Making the Most of Time William Stothers. It all depends on your disability, of course, but most of us probably pay out more money, and most likely more time and energy, to manage our daily routines than non-disabled people.
For example, even with health insurance, I shell out a steady flow of funds for wheelchair repairs, other orthopedic equipment and ventilator supplies. All those costs are only the beginning. I spend a lot of energy my tank seems to empty faster these days and time on my own disability to shore up my independence. For instance, it takes me two to three hours to get up and moving in the morning. The alarm rings at 6: Fortunately, with the assistance of my wife, also a polio person, I am able during this time to drink a cup of coffee, read my local newspaper and listen to NPR.
After unhooking my BiPAP machine, I haul myself on to my bedside commode for an extended period — this is essential for me because once I get into my power chair and dress myself only the direst emergency can get me back to bed before nighttime.
Before I retired from a job that required me to be at my desk by 9 a. We try as much as possible to keep up our house ourselves. Cooking, doing dishes, policing the clutter that inevitably accumulates; all get done even if we spend more time and energy doing these jobs than other people.
Some jobs, though, are beyond us. Changing light bulbs in ceiling lights, batteries in beeping smoke detectors, doing laundry, cleaning the bathroom, cutting the grass are some of the chores for which we have enlisted help. Sometimes that takes more time time, again! We have eaten dinner by candlelight on several occasions when the bulb blew as the mac and cheese floated in from the kitchen. If only we could time it so that the bulb would go out when we have dinner guests, guests that is, who were able to change the bulb, not always the case in the circles we roll in.
Happily, we have neighbors willing to help take care of many of these often annoying little household crises. And we are able to pay a housekeeper once a week and a garden man twice a month. But, we have often felt in the past that our neighborly help tasted like charity. People helped us, and we were truly grateful.
However, it was a one-way relationship and that bothered us. Over time we have developed an exchange system, largely unstated, that opens the way for us to help our neighbors, too. We have writing, advocacy, office and computer skills that we have used to help our non-computer using neighbors yes, there are people like that out there find information they need.
We have a van that we help car-less neighbors go shopping or to appointments, and rescue friends with disabilities whose wheelchair vans have broken down. Time banks are a kind of intentional community, which can be its own social reward.
Time banks can be centered in a local area, or spread more widely if mobility is not a critical issue. Have you had experience with time banking or other ways of exchanging, saving or stretching time — on the deficit or surplus side?
I would like to hear about it. Bill Stothers is a long time editor and consultant on media and disability policy. He edited Mainstream, a national advocacy and lifestyle magazine for people with disabilities and major newspapers in Toronto and San Diego.
I was fortunate to regain a good life after contracting polio in and lived a normal life until But, post-polio has hit with a vengeance, but still blessed because many are much worse. I had bulbar polio which now has wiped out my ability to be understood. I have lost my balance in my right ear, thus needing a walk or scooter when my legs give out.
In these cases, the virus enters motor neurons where it replicates and destroys the cells. These cells are in the spinal cord, brain stem, or motor cortex, which is an area of the brain important in controlling movements. Symptoms of paralytic polio often start in a similar way to non-paralytic polio, but later progress to more serious symptoms such as:.
Post-polio syndrome describes a cluster of symptoms that affect up to 64 percent of all polio patients. It occurs several years after polio has passed. On average, post-polio syndrome occurs 35 years after the infection. Post-polio syndrome is a slow, progressive disease. There is no cure, but it is not infectious or contagious.
Polio is often recognized because of symptoms, such as neck and back stiffness, abnormal reflexes, and trouble with swallowing and breathing. A doctor who suspects polio will perform laboratory tests that check for poliovirus by examining throat secretions, stool samples, or cerebrospinal fluid. IPV consists of a series of injections that start 2 months after birth and continue until the child is 4 to 6 years old. This version of the vaccine is provided to most children in the U.
The vaccine is made from inactive poliovirus. It is very safe and effective and cannot cause polio. OPV is created from a weakened form of poliovirus. This version is the vaccine of choice in many countries because it is low cost, easy to administer, and gives an excellent level of immunity. However, in very rare cases, OPV has been known to revert to a dangerous form of poliovirus, which is able to cause paralysis.
Polio vaccinations, or boosters, are highly recommended for anyone who is not vaccinated or is unsure whether they are.
Because there is no cure for polio once a person develops the virus, treatments are focused on increasing comfort, managing symptoms, and preventing complications. This can include bed rest, antibiotics for additional infections, painkillers, ventilators to help breathing, physiotherapy , moderate exercise, and a proper diet.
Historically, a person who developed lung paralysis due to polio was placed into an iron lung, a device that would push and pull chest muscles to make them work. However, more modern portable ventilators and jacket-type ventilators are now used instead. Humans have observed the effects of polio for hundreds of years, if not thousands. The relatively recent history of outbreaks in both the United States and Europe has led to an allocation of resources with which to fight the disease.
Throughout history, polio epidemics have led to the deaths of many thousands of people around the world. In , for example, over 6, people died of polio in the U.
However, it wasn't until that Jonas Salk developed the first polio vaccine, which has led to the widespread prevention of poliomyelitis. Although polio has essentially been eradicated in the U.
The polio virus usually enters the environment in the feces of someone who is infected. In areas with poor sanitation, the virus easily spreads from feces into the water supply, or, by touch, into food. In addition, because polio is so contagious, direct contact with a person infected with the virus can cause polio.
Individuals who carry the poliovirus can spread it via their feces for weeks, even if they have shown no symptoms themselves. The virus stays within the intestines, before spreading to other areas of the body. Eventually, the virus moves into the bloodstream where it can spread to the entire body. As is the case with many other infectious diseases, people who get polio tend to be some of the most vulnerable members of the population.
As a matter of fact, Franklin D Roosevelt whose portrait is still on the dimes was also a polio victim Showed next characters. For your convenience Manyessays provide you with custom writing service. All papers are written from scratch by only certified and experienced writers. Please contact our custom service if you have any questions concerning our service.
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- Polio Virus Introduction The polio virus which causes poliomyelitis in humans is an enterovirus which belongs to the picornavirus (small, RNA) family. Polio virus is rapid, acid-resistant, stable, highly tissue specific and consists of a single-stranded, positive RNA.
Polio (or poliomyelitis) is a disease that can cause lameness among children. It can cripple a child for life. According to WHO, one out of every cases, polio virus passes to the spinal cord where it can destroy the nerve cells which activate the muscles.
POLIO Essays: Over , POLIO Essays, POLIO Term Papers, POLIO Research Paper, Book Reports. ESSAYS, term and research papers available for UNLIMITED access. Free Essays from Bartleby | talks about Roosevelt had polio; (2) Axelrod quoted multiple sources to help the audience to further understand what Roosevelt.
Polio essaysBefore the development of the Salk and Sabin vaccines, polio was a serious infection that affected the central nervous system; however with proper vaccinations it can be eradicated in the United States today. There are different kinds of polio. They include spinal polio, non-paralytic. Free Essay: Poliomyelitis (shortened to polio) has been around for thousands of years, and there is still no cure, but at the peak of its devastation in the.