But for Carol, her most cherished memories were of her special friendship with FDR, who helped shape her personality and remained a source of inspiration to her throughout her life. A few days later, on November 8, he traveled to Georgia where nearly a thousand townspeople greeted him at the train depot. As his train pulled into the station, he stood on the platform, both arms clenching the railings, as a sea of onlookers proudly welcomed him to his home away from home.
Although his visits always engendered excitement, as the newly elected governor, Roosevelt embodied the notion that a disability is an obstacle than can be overcome, fueling the optimism that engulfed Warm Springs. Carol met FDR in the pools a few days later. She recounted their meeting, handed down as family legend by Aunt Mary, in a series of journals she wrote in the decade before her death in Our exercise tables were next to each other and, being the new girl in town, he greeted me with a warm hello and asked my name.
Yet what struck her most was here was a man who seemed to not feel a hint of self-consciousness about his impairment. As a result she found her own spirits were lifted. Devastated by the thought of raising a disabled child at a time when society viewed people with disabilities as outcasts, Evelyn spent days on end secluded in her room, leaving the care of her daughter to hired help.
Thus, at an early age, Carol learned that others retreated in the face of her disability, and soon she began to believe, like her mother, that she was somehow flawed and deficient as a result.
Circumstances were such that Aunt Mary and Carol were renting a cottage across the road from FDR, and soon Aunt Mary began spending her evenings playing cards with the governor-elect and his social secretary Missy LeHand. Carol often spent time at his cabin at the start of the evening, and noticed how FDR, never short of words, drew others in around him.
Family lore has it that Roosevelt became quite fond of Carol, probably getting to know her better than most of the children at the center because of the proximity of their cottages. As other patients gathered around, FDR peppered them with questions, and engaged them by throwing balls and playing other games.
As he ventured from the side of the pool, a swarm of children, including Carol, followed, climbing up on him, pushing him under water, all the while laughing with delight. Later that afternoon, after talking to local farmers in the area, FDR stopped in town to buy ice cream for Carol and all the other children, who rushed in their wheelchairs and braces to greet him as his hand controlled car climbed its way up to the Meriwether Inn, the central meeting place at the center.
Roosevelt cheered me on loudly and lustily through the race. You can do it. Come on — I know you can do it — try harder. She soon began to believe that the power resided in her to ease the awkwardness of others, most importantly of her parents, and gain the acceptance she most needed, by hiding her own self-consciousness around her disability. Like FDR, she learned to conceal all feelings related to her disability, never once speaking about the emotional and physical challenges she faced, not even to those she felt closest to.
And like FDR, she adopted a very gregarious demeanor, deflecting curiosity about her disability by focusing on the needs and wishes of others. Although both Carol and FDR paid a high price for appearing as if their impairment was nothing more than a minor impediment — including bouts of depression and a lack of intimacy with those around them — it helped them both to be accepted in society at a time when most people with polio rarely ventured outside of their homes.
Fortunately, FDR not only provided a model for how to ease the emotional side of having a disability but also the physical. Practicing his walking on the grounds of the rehabilitation center, Carol noticed how he always walked alongside somebody else, holding on to his or her arm with one hand and carrying a cane with the other, thereby giving the appearance of only slight impairment. With his legs held in place by his braces, he shifted the weight of his body onto his arms and slowly hitched each leg up and forward, smiling broadly while keeping his head up.
Although this was no doubt a tiring and burdensome way to walk, - one that would unknowingly come back to haunt patients years later in the form of post-polio symptoms - seeing FDR made Carol realize that the rewards were worth it. For not only was FDR totally accepted into society, but he was able to achieve the unimaginable. She became a concert musician who performed at Carnegie Hall and recorded with Igor Stravinsky. Carol returned to the rehabilitation center in December , where she stayed for 5 months.
She eagerly anticipated seeing her old friend, asking Aunt Mary every day when he would come. On a bright sunny afternoon, the two of them joined the flock of patients in front of the Meriwether Inn, awaiting his arrival. When FDR pulled up — behind the wheel of his Plymouth roaster, a long convertible with the top down — Carol and Aunt Mary rushed to greet him. Carol giggled as he exited the car, trailed by other patients.
These would be their last days together, as he was not at the center during her two subsequent visits as a child. Roosevelt was my hero, as indeed he was to all children and undoubtedly adults as well who were crippled. The world will not easily forget the special tilt of his chin and all the resolve, courage and determination that made it so unforgettable. That tilt, I believe, had a very special meaning to those of us who shared his personal fate of living with substantial physical impairment, determined to meet the considerable challenge of living our lives fully and well, despite our physical limitations.
Their relationship, however short, impacted Carol throughout her life. Although while I was growing up my mother never uttered a single word to me about her disability, she proudly displayed the photo and letter from FDR in her music room, where it continued to serve as a source of inspiration for her.
When I think about my mother — her gregarious personality, her ability to put others at ease by never mentioning her disability, and her ability to draw other people to her — I think of our former president, who had such a lasting influence on a little girl. Lessons from My Mother. To learn more about her and her book, visit www. Nutrition and Post-Polio Lauro S. This is the story of my personal journey to learn more about nutrition.
The path I followed and what I discovered along the way are specific to my body, my nutritional needs and my disability. Some of the principles I learned may apply to others, but the particulars relate only to me. I would no more recommend you follow my specific diet than I would urge you to take someone else's medication.
If you want to change your eating habits, please do it under the guidance of a licensed nutritionist. That's what I did. As it turned out, the nutritionist I worked with had a special interest in chronic disease, although she was unfamiliar with post-polio syndrome. Before going to her, I held what I considered was a traditional but "enlightened" view of nutrition. In other words, I was eating the kind of diet typically recommended in the medical literature and by the experts for a year-old male with my medical history.
What I quickly discovered is that "enlightened" is not always smart. When I was in residency training many years ago, I attended a lecture by an eminent nutritionist who said males should restrict their intake of "visible" eggs to one or two a month; so I reduced mine to maybe half a dozen a year. Then there was the issue of girth control.
In the interest of watching my weight, I tried to avoid snacks and sweets, except on special occasions. Fortunately, I don't have a very sweet tooth, so this adjustment was not all that difficult.
And so it went. Over the years, I cut out greasy foods, then lightly fried foods, and finally even lean, red meat. By the time I saw the nutritionist for my first appointment in February , my diet consisted, more or less, of the following:.
Sounds pretty healthy, right? That's what I thought. Well, my nutritionist did not agree. When I returned after the first week with a diary of everything I had eaten and the amounts, her comment was, "This is incredible," and she didn't mean it as a compliment. As it turned out, she thought almost everything I was doing was wrong. The bananas and orange juice were 'empty' calories, the soft drinks were a sugar fix, and my lunch was skimpy at best.
In short, I was on a starvation diet, in her opinion, which she calculated at calories per day. Well, if that were true, I asked, why wasn't I losing weight? Her explanation was that the body makes certain metabolic adjustments to accommodate different caloric intakes. But it wasn't the caloric intake that bothered her so much. My biggest sin was the small amount of protein I was eating about ounces per day. Anybody would be on that diet," she said.
I, of course, thought instantly to myself, "Is this the cause of post-polio syndrome? Are we all just eating the wrong diet? The short answer is "no. The main goals of my new nutritional plan were to increase the amount of protein, increase the number of calories, avoid the empty calories of orange juice and soft drinks, and finally, cut back on that nightcap.
While all of this was going on, I spent a fair amount of time at the library reviewing what's known about protein metabolism and what would be particularly relevant for polio survivors. Here's some of what I learned. First, proteins are in all human cells. In fact, they form the basic building blocks for each cell, its metabolism, and life itself.
Second, proteins are made from amino acids, and new proteins are being made synthesized and broken down degraded each day. This protein turnover applies to muscle cells, as well, which are constantly synthesizing new protein every day.
Some of this new protein comes from what we eat and some comes from "re-built" protein using amino acids already in the body. The third thing I learned, and most important for persons with post-polio syndrome, the largest "consumer" of protein in the body is muscle.
All of this means that for the muscles to have a fighting chance to maintain or increase their strength, there has to be a generous amount of protein in the diet.
We are not carnivores by chance. Knowing this, I changed my views on meat and other protein in a jiffy. At the same time, I relaxed my attitude about calories, as well. In summary, I experienced a "nutritional makeover. It has been almost a full year since my dietary epiphany. I now eat lean meat regularly, along with nuts, fish, eggs, oatmeal and anything else with protein.
I do not eat fruit for snacks as much, and most days, instead of a soft drink, I drink a home brew fortified with a protein supplement. My daily intake of protein has more than doubled to at least 12 ounces per day and my total calories are now somewhere between per day. My weight is essentially unchanged. The best part is that my "good" arm, which used to be tired all the time, feels stronger, gets less fatigued at the end of the day, and seems to recover faster when it gets overworked.
Is this a "cure-all? I still get intense fatigue in the afternoon. My tank of gas is totally depleted by the end of the week. I'm still searching for new ways to pace myself to conserve what energy I have. Is my new diet healthier living through healthier eating?
Will it work for others? What I have learned for sure, is that sensible eating under the guidance of an experienced nutritionist, is good advice for everyone. Acute polio and its evolution: Returning from 34 months in the southeast Pacific as a GI to my home in Akron, Ohio, I was entitled to four calendar years of a university education funded by the GI bill. I enrolled at The Ohio State University OSU and while rooming with a high school friend who was completing his last year of medical school, was given advice-- after joining him on several clinical rotations--to finish the pre-med requirements and use up the educational entitlement in medical school.
As a fourth-year medical student, I was looking ahead to a residency choice, considering anesthesia, pediatrics, physical medicine and rehabilitation, radiology and psychiatry. It seemed logical to defer the final choice until I had experienced these rotations during my internship at Philadelphia General Hospital.
My post-MD hospital year began with obstetrics and gynecology, followed by orthopedics, ENT, endocrinology and, by the time I needed to make a selection, I was still confused, so I flipped a coin and it came up psychiatry.
I applied for and was accepted in a program at Indiana Medical School. My choice seemed appropriate until my rotation on psychiatry in December. It was a disaster! As soon as I reported to the service, I was directed to an isolated, high-security room with a locked door, solid except for a small grill. When the door slammed shut behind me, I was imprisoned with a hypomanic patient who was manacled to the bed. Two hours later, I was able to attract the attention of an orderly and be released.
I called Indiana and cancelled the residency, too late to apply for another. A Paralyzing Fear Kathleen A. The event, polio at the age of six in , is at once an intimately personal experience, and at the same time a unifying event that binds all polio survivors by a shared experience.
We are all unique individuals as polio survivors, yet one moment in time unites us - the moment the polio virus changed our bodies and therefore our lives. Regarding my personal reaction, there were some flashbulb memories, the kind of memory that is like a picture, as if the instance remembered was not in the past but a present experience with vivid details long lost in the past. There were the hot packs, too hot for the nurses to touch so they handled them with tongs, the confining heat when first wrapped and then the prickly, damp wool as they cooled off.
The haunting rhythm of the iron lung, and my hair being tugged by the rubber neck band as I was pulled in and out of it several times a day. For me, at the age of six, the hair being pulled was the biggest trauma of the day. How little I knew of the future struggle to come, with each year a new challenge, some successes, some failures, but all in all, a very long road ahead.
I showed a preview of the film to a support group that I chair. My eight year-old, red-haired, niece was with me for the meeting. At one point I looked over at her, as she was intently watching the film, and was struck by the realization that my parents had to see their red-haired little girl being put in the iron lung and then they had to leave the hospital to go home and raise four other children who were as confused and bewildered as I was by the events surrounding that late summer in As I looked at my niece, I wondered how I could possibly handle her being paralyzed and further how I could cope with the sad faces that waited at home.
Life was changed for all of my family and I deeply respect their ability to handle this overwhelming illness with love and caring.
At the community level, polio as an epidemic has some unique features from other paralyzing illnesses. It was not an individualized event in the epidemic years; it was a public event that brought fear, compassion, and prejudice all at once. In my city of 40, to 50,, it was posted in the daily paper who was hospitalized with polio that week.
As the film showed, siblings suffered from being banished from friends, not out of hatred, but out of fear. However, as a child, it does not matter why you are ostracized; you just feel the hurt and go away. In the s there was not the support group concept that would have helped siblings, family and survivors cope with the emotional confusion that was nearly as crippling as the physical disease. It brought it back like a flash, like I was there.
As each individual shared their story, I felt less alone in my struggles, and I hope it is healing in the long run as buried pain can never heal. I also found the presentation well done and the narration excellent. It was the approach of the s, and the stereotypes it created live on. I would have liked the film to comment on this issue, but it was an historical documentary, and in that narrow definition, did its job well. The problem I most take issue with in this documentary regards the ending of the film.
As an historical document, the film ends as if the story of polio is only an historical one. As all polio survivors and their families and friends know, just as the polio vaccine has ended one chapter of the history of polio, post-polio syndrome has opened another chapter. The end of this new chapter has yet to be written.
Without public knowledge and support, the final chapter is in jeopardy of a less than optimal ending. As we celebrate the stunning success of the polio vaccine today, I am honored to help commemorate the anniversary by sharing a very personal perspective with you.
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 nerve cells cannot be replaced, the muscles affected no longer function and the outcome is life-long paralysis.
This disease mainly affects children under three but older children can catch it too. Adult cases are rare. Main casual agent of polio is virus of three types i. All the three types cause paralysis and the disease is highly communicable. Transmission is primarily person-to-person via the faecaloral-route, i. There is no cure to this disease. But it can be prevented and immunization is at present the most effective method of prevention of the disease. Vaccine provides effective immunity against all the three types of polio virus.
This is highly safe and effective. OPV Oral Polio Vaccination doses are given to children of the age groups of years on these days throughout the country.
- 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.