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Polio Survivors & Associates 
I had polio back in 1944-45, when I was around 6 or 7 years old. I was sick with fevers and very weak for a couple of months. One day, I remember carrying and arm load of toys across the room, that had been given to me because I had been sick, in our farm house in Kentucky, I fell to the floor totally paralyzed. I remember my mother rushing over picking me up and I slid between hers arms and fell to the floor again. My father drove me to the children’s hospital in Louisville Ky where I spent about six months, part of which were in th iron lung. I left the hospital wearing braces on both legs for around two years. About 20 years ago I hurt my knee skiing and developed PPS, which left me with a slight limp. It appears that Polio does come back for people that had Polio previously, after they had some form of traumatic injury, as I did. I can consider myself lucky I believe, there are many people that have not been so lucky.
I am a polio survivor having contraced polio in 1955 at the age of 12 and am now 69. I was almost 100% paralyzed, able to move only my fingers and head. After receiving extensive physical therapy at Gonzales Warm Springs Foundation in Otin, Texas for six months and continuing PT at home in Laredo for an additional 2 years, I regained most of my strength. I thought I was “cured” and and then enjoyedm a very active personal and professional life for about 4o years.
I would then be faced with unexplained generalized pain, loss of strength, stamina and energy only to discover after personal research that these symptoms were the late effects of polio, or Post Polio Syndrome (PPS). I was no longer able to continue with my career in education. i was unable to make it through the work day. Today, although I am able to walk with no assistive devises, I have energy and strength to be minimally active for about three hours a day, from about 11 A.M til about 2 P.M. The rest of my day is spent either sitting or lying down. When I am out of my home, I use an electric scooter or the scotters provided by some businesses.
What lies ahead concerns me as I become weaker. Currently, I am not receiving any treatment other than prescription medication for depression, pain, sleep, high blood pressure and elevated cholewterol. I am wondering whether physical therapy would slow down my priogressive weakness or if it would accelerate the loss of muscle strength. When I was first diagnosed with PPS, I was told that I should “Conserve to preserve”, i.e., conserve enerrgy to preserve muscles”
I wonder if any polio survivor who is reading this has found physical therapy to be helpful or harmful….or whether some other treatment has proven to be helpful in either slowing down or halting the progression of your symptoms.
Thank you,
Esther
Laredo, TX
Hello Esther, I am a 66 year old polio survivor. I have had physical therapy a few times over the past few years and I would recommend it with caution. The place I go to has a gym membership that lets me use their equipment to exercise. I had surgery on my left shoulder and thought that I would need it on my right shoulder also. I got involved in a restricted exercise program to maintain range of motion and strength. After several months my shoulder pain decreased and my strength improved making it easier to get around on my crutches. Just make sure that the therapist completely understands your situation and goals. Take it easy, go slow and let your body determine how much you can do.
Good Luck,
Joe
Blessings to you. My husband contracted polio in 1946 at the age of 6. Lived his entire life with a long-leg brace. Eventually he got PPS which was much worse than the original disease because he was also aging. He was told that physical therapy is not the answer for someone with PPS because your muscles are deteriorating. An electric scooter and a van with a ramp helped him live a half-way normal life. I was hurting to see him suffer. God Bless You. I am writing a book about his life. He was a poster child in California in 1949.
I am a Polio Survivor and suffer from severe Post-Polio Syndrome (PPS).
At the age of 10 months old in 1953 (months before the Salk Vaccine was widely distributed), I was paralyzed from my neck down for 6 months. After the polio virus did it’s damage, my Mother performed extensive physical therapy developed by Sister Kenny, an Australian nurse, which stopped my muscles from atrophying.
I recovered and lead a “normal” life. I played baseball, basketball and football as a teenager. Forty years later, I started to have renewed weakness, pain and severe fatigue. After 2 years and 10 different doctors, I was finally diagnosed with severe PPS.
Under my PPS Dr care, I have learned how to best deal with PPS and how to preserve my ability to walk. To do so, I now am in a wheelchair for most of my mobility needs outside of my home. I am limited to under 900 walking steps per day. I do “Deep Water Running” to help keep my muscles active without damaging them. I eat a high protein diet because I like it and protein helps reduce fatigue.
I joined Polio Network of NJ (PNNJ) in 1992 to learn more about PPS. September 2012, I was appointed to their Board of Directors. PNNJ is a wonderful organization dedicated to help polio survivors deal with PPS.
I joined Rotary International in 2010 after being a guest lecturer at the Rotary Club of Hamilton Township (Mercer County, NJ). I have been appointed to the Rotary District 7510 PolioPlus Committee and was part of the Rotary PolioPlus Delegation to the UN General Assembly’s Special Session on September 27, 2012 with world leaders and Bill Gates meeting to “Unite Against Polio “ (http://www.endpolio.org/blog/polio-eradication/2012/10/03/un-event-inspires).
Rotary International has played a major role from 1985 when they started their PolioPlus project to “End Polio Now”. Rotary has helped reduce polio cases from 350,000 per year in 1985 to only 223 wild polio virus cases in 2012.
My “Polio Goals” are:
• To play a role in helping Rotary International + Global Polio Eradication Initiative (GPEI) eradicate Polio worldwide. 3 remaining countries: Pakistan, Afghanistan and Nigeria
• To help other polio survivors and their families learn how to best deal with PPS.
• To help educate doctors and other medical personnel about PPS.
• To advocate for greater accessibility for the handicapped.
Sincerely in Rotary Service,
John Nanni
In June, 1941, at age 22 months, the docs did a spinal tap discovering I had “polio” and not the flu. Three weeks later they let me out of the non- air conditioned, quarantine out-building next to the hospital. The quarantine signs were removed from our house; and Dad could go back to work in Jacksonville, FL. The neighborhood’s fear of us diminished I am told. War was coming. I had lost control over one leg and government medical support did not exist; but the Alfred I.duPont’s were building Children’s Hospitals and one in my town. The Wards quickly filled up – I recall seeing in 1945 long rows of Iron Lungs supported by Mrs. duPont; God bless her. Swimming pool rehab was very helpful; I again learned to walk, in my full leg brace, by age four. In 1954 a Warm Springs pro bono surgeon from Emory Med. fixed my ankle so the brace went away. By age 21 I was racing an Alpha Romeo in SCCA races – life after college got much better – people were kind again. Some 35 good years later the early signs of PPS began; and, I discovered on the new internet, Polio support groups in England, Australia, and ST LOUIS! Oh joy, someone understood, as the local docs were, and still are, clueless. Since 1978, Rotary has been my passion, as it was for my Dad. We will END POLIO! Dick.
One of the things my Mom always did for me was to take me to cartoon marathons that were popular in the early 1950s (remember – no TV of any significance yet). On school holidays movie theaters in Chicago would have lots of cartoons and nothing else in order to bring in the kids – I remember as many as 50 cartoons in a row!
On Saturday, October 11, 1952 I was excitedly anticipating the Columbus Day cartoon show trip my Mom had promised for Monday, October 13, the day the Columbus Day holiday was being celebrated. I was sitting on the sofa in our living room, feeling just fine, when I reached forward to pull our coffee table close to me – and couldn’t. When I hollered this out to my Mom – the shit hit the fan big time, and 5 year old Gary thought he was going to die!
I immediately found myself in Chicago’s infamous Municipal Contagious Disease Hospital on 31st and California on Chicago’s South Side, lying naked on a table in what looked like an operating room, with a doctor telling me that I was going to be given a shot that would hurt just a little bit – so I wouldn’t feel the hurt from the huge needle used to give me a spinal tap. I shouldn’t have looked, but I did, and the sight of that huge needle and tube filled with red fluid being taken away after the spinal tap was done is another one of those images that will never go away. I don’t remember the pain of the shot – but I remember that tube!
I then found myself in a crib in a ward full of crying, lonely children – like me. In a crib! This was an epidemic remember, and there was a bed shortage.
The crib was next to a window. The window was on a corridor. Across the corridor was another window. On the other side of that window was a place where the parents could stand! This was a contagious disease place after all! I was given a slate and a piece of chalk. I don’t remember how much I could write after only a few weeks in 2nd grade, but for my one week in that place that was the only way I could communicate with Mom & Dad.
There were two other things I remember about that week. One was “bug juice.” I remember this as being a good thing: something like Kool Aid that was a treat we were given to drink. The other is eggs. Here is where I developed my life-long aversion to the smell and taste of plain egg. I’ve blocked out exactly what caused it other than that we were given them to eat every day, but I can’t smell raw egg without going back to that kid’s ward in the Chicago Contagious Disease Hospital.
After a week I was transferred to the Weiss Memorial Hospital in Chicago, and I guess by this time I knew I had escaped death and I hadn’t thought much yet about what polio would mean for me. There were lots of tests and physical therapy that I don’t remember at Weiss, but at least I could get visitors and hold and touch Mom & Dad again. I was in a room with two other boys: one was in an iron lung; and the other was in a body cast with his legs separated by a bar – he was severely burned in a fire.
I got many family visitors – and get well cards and comic books. This is where I amassed a lot of my comic book collection. At 10¢ each these were popular gifts – the Hot Wheels of their time (and they are worth some $$$ now since I saved them all!). Mom came to see me every day – by bus.
After three weeks at Weiss I came home, where I was mostly in bed with frequent outings to various doctors and other therapy things. I learned swimming from years of weekly visits to the Chicago Polio Swim Club – I had great form, but no speed, as I found out when I foolishly tried out for the high school swim team. I was taken to chiropractors at least once a week for electrical stimulation of my arm muscles. My accordion was sold or given away since there was no way I could use my left arm to pull and squeeze that instrument.
I was very lucky. Polio removed all of my left deltoid muscle and about 75% of my left rotator cuff, and I am right handed. I found out years later when I was given a full MRI and examined by two neurologists that I also had had polio in my right leg – but with no apparent weakness resulting.
I had to take a nap every afternoon – difficult for an ADHD 5-year old – but here is where I developed my love of classical music. WFMT had recently started in Chicago broadcasting only classical music and it was turned on in my darkened bedroom each day as I was put to nap. It is still Chicago’s primary classical music station.
I was out of school for three months, but thanks to my smarts and drills by my Mom I didn’t suffer returning to second grade. I remember being hidden in the coat room and surprising the class with my reappearance. It was a big deal when a “polio kid” was able to return to class.
Throughout grade school it was drilled into me that I could no longer do boy things like climbing, running, jumping or anything that would risk injury to my left arm, since without constant exercise the few muscles that were left would atrophy and my arm would be totally useless. This could be the reason why I developed a love and a talent for music (mostly jazz) and acting (over 50 shows now as an actor and stage director).
My resulting weakness in my left arm kept me out of Viet Nam in the late 1960’s, and I suffer from extreme cold intolerance now as a result of PPS.
Gee – I wrote more than I had intended…
I contacted polio when I was 6 months old living in Bangalore, India. My parents trekked out from Burma during the invasion by Japanese 1941/42. My father was working for the Government in India and my mother was based at Bangalore which had a large air force base there with British and American pilots. It is believed that one of the American pilots returning from furlough in Hawaii has the virus.
There was no known cure for polio then, especially India, so I was given shock treatment twice a week – yes at the age of 6 months old.
My left arm is the only visable sign I have had polio – my arm cannot be straightened or lifted higher than my shoulder. No muscle, just a very thin arm bent which caused much teasing when I was at school.
I have had a very busy and fulfilled life until I turned 50 years of age, then ‘small’ things happened with my health which doctors said “oh its menopause”. My husband did research on the internet and contacted Post Polio groups in both Canada and the United Kingdom.
in 1999 I was able to obtain an appointment to see Dr. Williams at St. Thomas’ hospital in London (and that is not easy if you are not a U.K. citizen and covered by the National Health Service – free health). I stayed in U.K. for 2 months and was fitted with orthodics as the left left was much shorter than the right and I was in the hydrotherapy pool every day.
I am now 69 years of age and PPS definitely being noticed more.
Very few Doctors are familiar with symptoms of PPS let alone know what it even is.
I am now having a lot of breathing problems, respiratory ailments, muscle wastage on whole left side of my body causing spine to move to the left. Tendons in arch of left foot collapsed so very painful to walk on left heel – but that didn’t stop me from 2 months overseas recently. I use a walking stick if I need to. Only exercise I do is in the pool and I rest if I need to. I don’t plan on being in a wheel chair for quite some time yet… but if I do , rest assured the wheel chair will have a lot of bling on it.
Australia medical profession does not appear to be up in the world with PPS although we have very active Post Polio Groups.
Patsy Evans
Hi, my name is Joyce Mitchell. I was born in 1949 and contacted Polio in 1950. When I tried walking, my aunt said that I was constantly saying that my leg hurt. My ma took me to see the Doctor and was told that I had polio. I remember the brace I had to wear, in fact my ma had it bronze. I didn’t have any problems breathing, thank God. The hospital wanted my ma to bring me in so that they could do research, she refused. The polio has affected my right leg, its shorter than the left, and it skinny, lol. I have a plastic leg which I hated, and did not wear it. I am now 64 and experiencing PPS. It is not severed but it is there. I have a scooter to get around, but I do try to walk some. This is just a summary of what I have been through. I am fortunate though, I don’t have to use the iron lung for I have normal breathing. I do have trouble falling to sleep. I am now experience weakness in my arms and legs. I don’t do any long standing. I have back problems and get tried quickly.
I have a dream *
Als Martin Luther King am 28. August 1963 diese Rede (*) anlässlich des Marsches der Bürgerrechtsbewegung nach Washington hielt, hat er Tausende von Zuhörern in seinen Bann gezogen. Er hat auf die damaligen Missstände der schwarzen Bevölkerung aufmerksam gemacht.
Damals, 1956, träumte auch ich von einem Leben ohne Kinderlähmung, damals abgeschirmt hinter Glas alleine in einem Spitalbett, ohne wirklich zu wissen, was um mich herum alles geschah. Heute, mehr wie 50 Jahre danach, ist mir bewusst, was es heisst, an Polio erkrankt zu sein. Heute ist mir aber noch viel mehr bewusst, dass ich, weitgehend verschont von schwerwiegenden Komplikationen, das Privileg habe, mich präventiv für die Kinder unserer Welt einsetzen zu können.
Viel haben wir seit 1985, als Rotary sich für die Ausrottung der Kinderlähmung einzusetzen entschied, erreicht – über 99% weniger Polioerkrankungen pro Jahr. Dennoch fürchten wir das ungemein aggressive Virus mit seinen bis zum Tode führenden Folgen immer noch. Solange die Krankheit in den drei Endemieländern Afghanistan, Pakistan und Nigeria nicht erfolgreich bekämpft wird, besteht weltweit die Gefahr neuer Epidemien, wie wir sie im Moment gerade in Somalia und Kenia erleben. Unzureichende Durchimpfung – auch in unseren Breitenkreisen – kann jederzeit und überall zu neuen Ausbrüchen führen. Erst kürzlich konnten Viren, aus Pakistan eingeführt, in Abwässern in Israel nachgewiesen werden. Dank gutem Impfschutz kam es bisher zu keinem Krankheitsfall. Ähnliches wäre auch bei uns möglich!
Als ich für eine Führungsaufgabe bei Rotary gewählt wurde, hatte ich einen weiteren Traum: Aktionen zu organisieren, die mithelfen sollen, unsere Bevölkerung auf die weltweite Poliosituation aufmerksam zu machen und Gelder zu finden, um die weltweiten Aktivitäten massgeblich unterstützen zu können. Der „Sonnenblumentag“ 2008, die „EndPolioNow-KeyFinder-Aktion“ 2010 und die Aktion rund um den Film „The Help“ 2011 ergaben die stolze Summe von über 2 Millionen Schweizer Franken. Weiss man, dass eine Impfung 75 Rappen kostet, so konnten mit unserem Beitrag über 2.5 Millionen Kinder gegen Kinderlähmung geimpft werden.
Rotary alleine schafft es aber nicht, die enormen finanziellen Bedürfnisse zu decken – weitere Organisationen, wie die Gates-Foundation als wichtigste – und die Staaten dieser Welt müssen mithelfen, die Chance zu packen, der Krankheit endlich Einhalt zu gebieten. Sowohl das Fürstentum Liechtenstein wie auch die Schweizerische Eidgenossenschaft beteiligen sich seit neuem wieder an diesem entscheidenden Kampf, indem sie bis 2015 Mittel in der Höhe von CHF 1.8 Mio. zur Verfügung stellen. Schaffen wir – Rotary und seine Partner WHO, Unicef, CDC, Gates-Foundation – es nicht, Polio auszurotten, so könnten Vorhersagen zufolge weltweit 200’000 neue Fälle pro Jahr auftreten. Deshalb ist es wichtig diese Krankheit komplett auszurotten. Sollten wir den Kampf gewinnen, so ginge ein Traum der gesamten Menschheit in Erfüllung, traumatisierende Polio bedingte Schicksale blieben aus und all die enormen Summen, die für die Ausrottung dieser einen Krankheit benötigt wurden, stünden weltweit weiteren Massnahmen im Gesundheitswesen zur Verfügung. Als ehemaliger Poliopatient sähe ich meinen Traum erfüllt!
I am Eugenia. In the summer of 1951, I had polio at age 15 months and was paralized from the neck down. Living in a Mexican farm at the time, the difficulties that represented to get treatment were overcome by my parents, a very young couple ages 18 and 23 who had only completed elementary education, but were, and still are, totally compromised with their parental love and care. After moving to Mexico City to get medical attention, with endless physical therapy and multiple surgeries (about 15 of them with long hospitalizations and full body casts for months at a time), I recovered the movement of my arms, but my legs and trunk were, and still are, bedly paralized. At age 13, I went for a consultation to Boston Children’s Hospital after having been told in Mexico that I did not have much chance to continue walking even with braces. In Boston, I had 2 surgeries, but I remained in the hospital for a whole year, most of the time alone since my whole family remained in Mexico. I was in a full body cast and I had the opportunity to learn English. Now I can still walk with 2 full leg braces and crutches, although at age 63, moving has become more and more difficult and painful.
I have led a productive life as a school psychologist with a full time job up to 2 months ago when I retired from my work as head of the Special Education Department for the American School in Mexico City.
I am now allowing myself to have less active days and to stop for breaks when my body demands it. I have lived in Mexico City most of my life and have endured the total lack of facilities to accommodate persons with disabilities. I did complete graduate school in USA, and that is the reason I can communicate in English and in Spanish.
I am still independent in all my daily activities and have a wonderful daughter who helps when necessary. My what ever remaining leg muscles, hips and knees are in very bad shape and I can barely take one-two steps to get into the shower, but with my braces and crutches I can still do a lot. However, my shoulders, and in general my arms, have probably gone through great deterioration due to overuse and to practically assist me in doing everything to compensate for my lack of leg/trunk strength.
I am looking forward to this new stage in my life when I do not have to demand so much of my remaining physical abilities with the hope that I remain independent for as long as I live. I would like to think of us, polio survivers, as a generation close to extintion and that no more children have to live with the effects of this malady once and now PPS over again.
Thanks,
Eugenia
Mexico City
I salute you Eugenia
You are determined and positive
I had polio st age 4. Long story. Now my polio leg..the knee has packed up and I’m busy having a full leg brace made up. I’m battling along with crutches until my brace is ready…I can tell you it’s a battle, but you already know that.
You are an inspiration to me.
Paddy Craig
South Africa
Craigpaddy54@gmail.com
POLIO: Sweetwater, Texas, 1946.
In my second week of first grade I went home sick with a headache and stiff neck. Times weren’t easy in the Whisenant household. Our front bedroom was rented to a couple and my mother, daddy, older brother and sister and I slept in the other bedroom. My brother and sister also complained of headaches but returned to school in a couple of days. Visits to our Doctor were inconclusive but when I could no longer walk by the end of the second week, I was rushed off to Parkland Hospital in Dallas, 240 miles from Sweetwater. The stiff neck, sore and weak muscles and excrutiating headache were eased by my mother’s assurance that she would sit and read to me in the hospital and chocolate ice cream would be on the menu.
The examination room was a concrete square and cold. My daddy squeezed my hand as they inserted a large needle to draw fluid from my spine. The verdict: Polio.
I was immediately taken away from my parents. It was nighttime and dark and the painful cries of five other girls in the room they took me to was only made worse by my placement in an iron crib with high sides. I kept waiting for my mother. It was probably ten days before they could return to Parkland where they were able to waive to me from the parking lot. My black nurse held me up to the window from my third story room. One Sunday my parents brought chocolate icecream and coloring books for the girls in my Ward. We never got them in our “Isolation” as nothing was allowed that could not be sterilized. In a few weeks I was transferred to Scottish Rite Hospital to a ward of 15 girls with a variety of crippling diseases.
Over the eight years I had 13 experimental surgeries, my parents were never allowed to be with me except between 2 and 4 pm on Sundays. Times were hard and my parents could not always come to see me during those 2-3 week hospital stays. No phone calls, only cards and letters. The nurses, orderlies and bedmates were Black, Hispanic, Native American and Catholic, all people I was not exposed to in my Protestant, white, middle-class home. I loved my Black nurses that curled my hair in rag pikinin curls and the Hispanic orderlies that would bounce a quarter on my fresh made draw sheets of the hospital bed. I loved it when the Nuns came because they would smile as they delivered chocolates and oranges in their long black habits with the white crisp headgear.
Tuesdays and Thursdays we were treated to occupational therapy. I learned to weave at age 6 from a blind woman, made lots of decoupages from used greeting cards and created items from donated recycled materials. In those years, surgery meant bedfast at the hospital and a cast leg for at least 3 months at home. I made my first dress at age 9 when my mother moved the sewing machine to my bedside and fixed it so I could run the leg lever with my good leg.
Writing, sewing, drawing and other handwork kept me busy. There were no televisions, cell phones or electronic games. Monopoly and Canasta were favorites with my brother and sister.
The fabric of my life started its rich, colorful diverse pattern in those yearly stays at Scottish Rite Hospital. In 2009, I traveled for my first NID to Benin, West Africa and made arrangements to stay on in Ghana for three weeks. Part of that time was spent in rural schools delivering soccer balls, pumps and school supplies from my Rotary Club and teaching the children to draw cowboys. My club purchased 12 dozen bandanas to share with the children so they could have a bit of the cowboy West. Actually, the Tribal Chiefs made sure they got their bandana first!
In 2011 I traveled to India for an NID and stayed on for ten days including teaching in a school for the severely handicapped. I delivered school supplies, bandanas and taught them to draw cowboys. They were so wonderful and excited.
Returning for my second NID in India this year, I made arrangements to stay on to teach at Akshay Prantishthan, a school for handicapped (differently abled). I taught them Stick Loom Weaving, read to them from Will James books my club donated and taught them to draw cowboys. My 32 days in India were wonderful because we met and worked together with such open hearts.
The diverse patterns in the fabric of my life have been woven with Polio and through Rotary ‘s programs I am adding new richness to the patterns.
2009, my first NID: Benin, West Africa. Ghana for three weeks delivering school supplies, soccer balls, pumps and 12 dozen bandanas to accompany “Drawing Cowboys” lesson.
2011 and 2013: India NID: remained to travel, deliver school supplies and teach drawing cowboys.
1946 I learned to weave. 2013 I taught polio survivors to weave. Sarah Sweetwater, Dist 5190 Rotary of Elko, Desert Sunrise
It was the summer of 1952 – a polio epidemic was raging across America, particularly in the midwest. Many communities issued warnings; i.e., stay out of public simming pools, stay away from crowds, etc. I was 14 years old and living in LaCrosse, Wi. the best part of the summer was the LaCrosse County Fair – my friends and I wa
I am “Holly”, born in 1944 and I contracted polio in 1946 in Ipswich, MA and it settled in right leg, which eventually atrophied. Bostons Children’s Hospital wanted to do experimental procedures on me, so our family doctor and mother decided that mother would drive to Columbus, Ohio, where my father had been transferred to work after WWII, and admit me into Columbus Children’s Hospital. Columbus Children’s Hospital was too crowded with sick polio kids lining the halls, so I was sent across town to White Cross Hospital. I have many fond memories of White Cross, their doctors, nurses, staff and the many children, all of us in wards.
Dr. Joseph Leach of Dawson, Leach and Brown was my doctor for 17 years until my last surgery in 1963. I was given hot packs, put in whirl pools and made to do exercises. My mother exercised my leg every night for years. She also exercised my sister’s leg so she wouldn’t feel neglected. “Dr. Joe” performed my 4 polio surgeries:
Surgeries: (1 & 2) First surgeries were to stunt growth of left good leg at the
knee to prevent wearing heavy extra inches of soul on right shoe.
I have a twin sister who is 6 inches taller than myself.
Surgery: (3) Right calf muscle graft: unsuccessful.
Surgery: (4) Altering shape of right atrophied polio foot; instead of club foot,
I now have a flattened foot with an arch. Also, with this surgery,
ankle was stabilized to eliminate brace; successful.
Surgeries: (5, 6, 7 & 8) Because of surgeries, 1 & 2, the knee was weakened
which set me up for more surgeries of the left knee. Surgery 5 was
for torn cartilage and ligaments of the knee. Surgery 6 was for
lump under knee cap. Surgeries 7 (1994) and 8 (1997) for knee
replacements.
It just seemed like, I was forever having to learn to walk all over again, again, and again.
I wore a full brace from 1946 thru 1963; half brace from 1997 to present; probably forever.
I have had the same family doctor for over 25 years. He has no interest in my polio situation and as a result of that, I have had to find my own way with dealing with polio and health problems. You ask me why I keep this particular doctor – he is a genius in diagnosing my medical issues. And in order to help myself, I have to have the right diagnoses. Because of the diagnoses. I have been finding ways to combat health issues with natural remedies. In order to combat fatigue, I have developed what I call ‘feeding my muscles’. Every morning, I drink protein with whey and take L-Carnitine. I had gone to the doctor to find out specifically if I was low on L-Carnitine and I was, which is to be expected in polio survivors. All muscles require an adequate supply of L-Carnitine to function normally.
Polio survivors have found numerous ways of dealing with atrophied muscles. Braces are one of those ways. January 2013, I experienced the new advances in bracing at YANKE BIONICS and the tireless way of walking, with ‘push off power’; instead of swinging my leg forward at the hip, I am using toe power supplied by the flexible foot plate.
MY EXPERIENCE WITH YANKE BIONICS BRACING
Harriette “Holly” F. King
February 4, 2013
September 29th, 2012, I attended a yearly Ohio Polio Conference in New Philadelphia. One of the speakers there was Roger Marzano of YANKE BIONICS who had been working with physically challenged people since a teenager – clearly 20+ years. He was able to tell us how we functioned mentally and physically with our handicaps – things I hadn’t recognized or been aware of in myself. He also brought numerous braces and designs of braces for different needs. I was drawn to the braces that were seen on a contestant, Oscar Pistorius, that was in the 2012 London Olympic Games. It was explained to us that these braces had been available to veterans for quite awhile and were now being made available to the civilian population. We were told that the price could be a problem depending on insurance.
In November, my local polio group, COPN, introduced Marie O’Neal from YANKE BIONICS who was locally situated. After her talk, I asked her to evaluate my left knee which had been operated on 6 times; (1 & 2) stunting the growth of the left leg procedure, (3) torn ligaments and cartilage surgery, (4) lump under knee cap removal and (5 & 6) knee replacements. The replaced knee wouldn’t stay in place. Marie got down on her knees to observe the action of the knee and having been told of the burning sensation I felt when bending and unbending the knee, she applied pressure on the knee cap toward the inner part of my leg and at the same time applied the pulling of my calf toward her and asked for me to bend and unbend the knee. It responded effortlessly and painlessly AND NO CRUNCHING AND GRINDING! I didn’t hesitate; “What prescription should I request from my doctor for the left knee and right polio leg.”
Fast forward to January 7th, 2013. On the way to my YANKE BIONICS appointment with Marie, I told Fred, my significant other, “Marie may put me back into the hard plastic brace.”, because that was the impression I was getting from her on a previous appointment. I said, “If she does, I would respect her opinion, because I trusted her.” She is the type of person who when seeing someone struggle, wants to help them. We patients say we want a concerned doctor to help us. In Marie’s case, she wants the right kind of patient, one with an open mind, and she will do wonders for them. My whole experience with YANKE BIONICS were with people who cared.
For the last 17 years, I had been wearing a hard plastic form fitting brace that went from the arch in the bottom of my foot, under and around the ankle to finish up the back of the leg to the knee. A problem with the old inflexible hard plastic brace, was when dealing with rolling terrains. When going up hill, the brace would want to force my leg backwards or going down hill, the brace would slam me in the back of the leg causing my leg to buckle. The brace definitely wasn’t ideal, but I liked it because I could ‘speed walk’ – keep up with my peers. Marie had observed my old brace in November and she was prepared to plaster my leg for the same old brace, but first, she wanted me to try one of the new concept in braces that were available. She had experienced the mind set of some disabled brace wearing individuals; “If it works, don’t mess with it!” Well, she soon learned, I was there specifically for the new brace. I trusted her because of her evaluation and correction of my left knee. (Neither my family doctor nor my knee replacement doctor took the time to consider what my problem was with my knee.) So she left the room to come back with the brace. In putting on the brace which was already in my shoe, she explained that I had to have my knee forward and my foot placed back 110 – 120% to strap my leg. Unlike all previous fixed non-giving braces for the past 66 years, the brace went from the bottom of the flexible foot plate, with a flexible support system going up the outside of my foot to a fixed front form fitting panel. So after tying my shoe laces I stood up and took a couple of steps. I was aware that Fred and Marie were talking and asking questions, but, I was in my own little ‘single world’, when it was so necessary for a disabled person to analyze their environment for their safety sake? I wasn’t familiar with nor totally comfortable with what I was feeling – it was “weird” and I said so. I was trying to figure out what this new feeling meant to me. But, then without thinking, I needed to see myself walk. What would taking stairs or a ramp be like? WHAT A DIFFERENCE! I walked without a limp. I could take shallow steps without a stair bar. And the ramp, well it was like level ground, effortless. I had gone there to see if my life could be easier, if I would benefit from the new advances in bracing. Normal people walk without thought, whereas disabled people have to psych themselves up, get some adrenaline going. The first thing I noticed was the tireless way of walking – I had push off power. Instead of swinging my leg forward at the hip, I was using toe power supplied by the flexible foot plate. It was immediate, and was the reason for Fred insisting, that I wasn’t limping. At the time, it seemed like the brace was returning energy, but it must have been residual adrenaline, because it hasn’t occurred since.
On my next appointment, Marie braced my left knee. Now when walking, I am free – not concentrating on how my legs are reacting to a given location or time of day. I am enjoying what everyone else is enjoying, company, surroundings, situations.
Until the initial conference of September 2012, I had no idea of the life-changing technology that could be provided for me. After six decades of disability with no hope for any change, I have achieved near-normal mobility. I went from being an actual polio poster child to a person who can now enjoy life at full speed with those I love and those who love me.
HI, I am Sue Welsch, and I was stricken with polio in August of 1950 at nine years old. I was in Cook County hospital in Chicago for three months and fortunately, was able to leave with no physical limitation except a few problems swallowing. My memories of those three months are vague. I was in a ward with many other children, some in iron lungs, and others just in beds, like I was. I remember getting letters from home and from my classmates and also distinctly remember that everything that I wrote had to be baked in an oven for sterilization before being sent. When I returned home, I was a pariah. Nobody would play with me or come over to my house. Due to a very understanding teacher, this did not last long. I felt fortunate because three others on my block came down with polio at the same time as I, and one died and the other two came home in wheel chairs and braces.
I pretty much blanked out this experience for years, only remembering that I had polio when I had to put it down on a medical history form. Then, at age 60, the post polio symptoms began and have been getting steadily worse. I feel lucky that I have found a physician who also has post polio, so the two of us compare notes, strategies, and also medications that work. I am thankful for the Post Polio organization, because I have learned some coping strategies from it. Most important has been the information about anesthesia, because after a knee surgery, I had a very hard time breathing and coming out of the anesthesia. Now, I hand the post polio information about anesthesia to the anesthesiologist for every surgery.
I am a member of Rotary International and pledge $1200 per year for the Polio fund. I have been on a Rotary NID in Ghana, which was life-changing for me. I do everything that I can to help in the worldwide polio eradication effort.
My family lived around 58th and Wentworth on Chicago’s south side when I contacted polio in the summer 1949 at age 4. I was one of four children. A brother who was 8 years older came down with it first and was in a hospital. I only have a few memories but they are vivid. My older siblings who were quite a bit older remembered a lot about the epidemic in our neighborhood. They said one day I was not feeling well and kept stumbling. When my Dad came home from work he put me at the end of the living room and told me to walk to him but was unable to do it. I vaguely remember that event. My sibling said an ambulance came and took me away and over that summer they saw a lot of ambulances taking children out of the many apartment buildings on our street. It was believed most of us caught it from a public wading pool at a local park. One of the painful memories that has stuck with me and has popped up over the years was being in a crib which I hated because I wasn’t a baby. The crib was right next to a glass window and I couldn’t touch my parents on the other side. I just remember crying and wanted my family. The “bug juice” mentioned above, I just remembered that for the first time.
When I got home my mother gave it to me all the time and she called it “bug juice”. I was eventually ransferred to another hospital and remembered how happy I was when they brought me into a two bed room and my big brother was in one of the beds! I remember having a lot of physical therapy together. The disease affected my left leg and my brother who had a milder case had it in his back. That is all I remember of the hospital. What is really vivid memories were the braces on my leg and a lot of physical therapy. A nurse would come to our home and work with me on the
dining room table and bathtub nd eventually we went to a clinic for therapy. I fully regained use of my leg. My brother was diagnosed with PPS in his 50’s. I’ve always been very physically active but not athletic. I’m now 69 yr. old, still very active and work full-time as a mental health nurse. I have a lot of symptoms of PPS but don’t discuss them with anyone as I’m afraid it will result in an “eye roll”
as most people, including medical professionals, are very suspecting about anything that contains the word “syndrome”. I worry about the days ahead as I fear losing the quality of life I now enjoy.
NO MORE CARTWHEELS
By JoAnne Simon, 1945 Polio Survivor
To be the undisputed neighborhood champion of cartweels was an accomplishment I was proud to hold as a ten year old girl in 1945. Although, challenged by many, I was the only child in the neighborhood who could do cartwheels all the way around the house without ever stopping. Added to that momentous achievement, I was also known to ride to the top of a steep hill on my bike and take off with my hair flying and sail down the entire four blocks…..all with no hands on the handlebars.
On Labor Day in 1945, the dreaded Polio epidemic claimed me as one of its’ victims, and my high kicking legs and bouncing energy succumbed to the ravaging disease. The bright neon sign placed on our home proclaimed that a quarantine was in place and my life would now change. I remember going out onto our back porch and down the stairs and then being unable to get back up the stairs when my leg gave out, and experiencing an intense and painful headache at the same time. For many years afterwards neighbors would talk about the agonizing screams they heard from a block away when the doctor attempted five times to insert a needle for a spinal tap.
Finally successful with a spinal tap, the positive results returned, and then the fear intensified when our family doctor announced to my parents that he refused to return to our home because he feared the risk of exposing himself and his family to the fearsome Infantile Paralysis as it was called then.
Southview Isolation Hospital in Milwaukee was my destination and there was an overload of patients combined with shortage of staff. I was isolated in a hospital environment while my family was quarantined in their home and unable to visit me. The Sister Kenney treatments began with the application of heat with wool cloths together with an attempt to treat the spasms of the muscles with physical therapy. The footsteps of the nurse coming down the hallway were silent but the clanking of the tub holding the boiling water and the wool clothes remains in my memory. The picture of the nurses handling the hot wool cloths while running them through the attached roller is still fresh in my mind. And, laying there with my leg wrapped in the cloths while the smell of hot wool filled the room is added to the mix. It was years later that I learned Sister Kenney wasn’t a Catholic sister or nun but instead the title of Sister was bestowed as a military rank for nurses in the Australian medical corps.
Near the hospital was a clock tower that chimed the hours as the days slowly crawled by. In a ward room filled with other Polio patients, I was one of the least affected by the disease. A 21 year old woman was mostly hidden from my view by a thin curtain between our beds and her weak whispery voice could barely be heard as she periodically asked me again and again what time it was. When I realized she had stopped asking me to tell her the time, and it seemed unusually quiet, I managed to squirm out of bed and peeked under the curtain. Nurses came running when they heard screams coming from my ten year old throat and there was a flurry of activity as they removed her body covered with a sheet.
All during this time my Dad was unable to go to his workplace in Milwaukee because of being quarantined. His employer would deposit work papers on the curb in front of our home at night and the computations were called in by phone because nothing coming out of our home could be touched by others. The many books and gifts mailed to me at the isolation hospital by family and friends had to be burned in the hospital incinerator when I was discharged. Then began the fittings for a metal leg brace and home visits by a physical therapist, all with the help of the March of Dimes. Schooling continued when I was transported to McKinley Orthopedic School in West Allis. How different it was back in the 1940’s. A driver was paid by the State of Wisconsin to transport several of us in her vehicle to the orthopedic school and two other deaf passengers to Gaenslen School.
A real bright spot in my life during those early teen years was the opportunity to attend the Easter Seal sponsored Camp Wawbeek in Wisconsin Dells, Wisconsin. Close friendships with other handicapped teens from all over the state developed with regular written correspondence keeping us in touch between summer camp sessions. Only as I became older did I fully understand the importance of the socialization skills those summer camp experiences added to my life.
In 1985, looking back on schooling, jobs, marriage, motherhood, all interspersed with multiple surgeries and struggles, I became a charter member of the Post Post-Polio Resource Group of Southeastern Wisconsin and now years later I’m involved in the Wichita, Kansas Post-Polio Support Group. Thanks to all of you everywhere who have helped to educate and inspire so many of us to “keep on, keeping on”.
Hi, I’m Shirley Pincus and I just joined this group today! Here’s my story…
I know it’s long and probably boring, but if you do nothing else, please please skip to the bottom and read about how I found a cure for intense pain I endured for over five years. You may find the same surgery could help you, too. (And no, I’m not an infomercial and am not paid to endorse anyone or anything! LOL)
I grew up in a small town in northwestern Illinois. I contracted polio in 1954 at the age of three. My left side, specifically my left lower leg and foot, were impacted in that I was (am) partially paralyzed from the ankle down. I remember wearing braces that were changed every few years to accommodate my (slower) growth. I was treated by teachers, school kids and others as “damaged goods.” My father played semi-pro baseball and, since I had no brothers, and neither of my two sisters was much into sports, my dad would pitch to me and he taught me how to hit. I got so good, I could hit his ball way into the neighbor’s yard (and we lived on a half-acre).
Yet, I remember being in the third grade and it was recess. My teacher decided we should play softball. I was not chosen to play in the field, but I asked if I could bat. When it was my turn, I hit a home run, but I remember my teacher saying something like, “it’s alright, honey, we’ll have so and so run the bases for you.” I had just hit a home run, and could have walked the bases three times by the time the outfielders had retrieved the ball, but she wouldn’t let me! That fueled my inner fire to “show everyone” that I could do anything they could do!
After about 12-13 surgeries during my adolescent, teen and young adult years, I began to become active in outdoor activities, like walking, hiking, snowshoeing, etc. I’d always been in pain but nothing I couldn’t deal with.
I moved to Chicagoland in the late 70’s, where I met my husband. Today we live about 40 miles outside the city.
I enjoyed a very lucrative and successful career as the Director of Human Resources for an automotive training company outside of Chicago. I reported to the CEO and managed a staff, and worked long, long hours. My husband and I never had children.
About five years ago, I began to experience debilitating pain in my left foot. I’d come home from work, exhausted, swollen leg and foot, and got right into bed. My husband would generally fix me something to eat. Then I’d go to sleep. Ultimately, the pain became so intense, I could hardly stand it! I sought more medical intervention, and finally my podiatrist suggested partial amputation of my second and third toes. I sought a second and third opinion and ultimately decided to go with the third doctor. That surgery was performed in late 2012 and I thought it would take care of my pain. Only, it didn’t! Not able to stand the pain any longer, one night I was searching the internet for doctors who specialized in foot disorders, hoping to find someone who could stop the awful pain. By chance, I stumbled upon a practice of a podiatrist/MD and a neurologist who had formed a partnership to treat severe and unusual lower extremity pain. I did more research on both of them, talked to my husband, and I ultimately decided to make an appointment. I remember it was Halloween, 2013, when I first met my angels, Doctor Edgardo Rodriquez and Doctor Roberto Segura.
Both doctors examined me, performed some tests, and asked me about my pain level (I reported a 9 on a 1-10 scale, and initially told Dr. Rodriguez I gave him full permission to amputate my whole foot, if that would relieve the pain). He later said he knew then that he could help me. The neurologist, Dr. Segura, tested the nerve responses in my left lower leg and found them lacking, of course. Dr. Rodriguez told me about a new technology, cutting-edge surgery where he would locate damaged nerves (using an extremely powerful microscope). He would then remove the damaged nerves and replace them with grafted decellularized human nerve tissue (live nerves from an organ/tissue donor). He did this in three places, each donor nerve about 3cm. The surgery was December 13, 2013. The next morning I woke up with pain…surgical pain…but no more of that awful, debilitating pain I had endured for so many years!!!!!!
In April of 2014 I retired from my job, not only to continue to heal (healing of this magnitude will take about 18 months) but so I can devote my time my recovery and to spread the word to others like us: you don’t have to live with nerve pain any more! There IS treatment! I am looking for any and every outlet where I can promote the awareness of this new surgery and of organ donation. And that brings me to my third (and maybe fourth and fifth) angel: Those whose nerves I now have embedded in my leg. Thank you, whoever you are. And to my fellow polio survivors, may you find your own angels!
I contracted polio the summer of 1952 at the age of five, as did two other kids in the neighborhood. Mom said they packed me in ice to bring my fever down. I remember being held down for a spinal tap, then being put into a tall crib. I hated spending time in the whirlpool alone. I had physical therapy on my left leg and foot once a week for a year after I was released from the hospital. For the next few years, it seemed that I was always spraining my left ankle as it was weak. My left foot was always a size smaller than my right, but I didn’t start wearing two different size shoes until I was in my 40’s. Walking was my exercise until about 10-15 years ago when on a walk one day, my calf completely locked up, as if to say, “that’s enough. You can’t do this anymore.” Since I was no longer walking for exercise, I gradually started to gain weight. I’m still working on weight loss. A few years ago, I had surgery (five procedures) done on my foot to relieve pain and resolve some other issues. However, my toes all curl under now, and I have little feeling in the front half of my foot. I wear toe covers on two of my toes. Now I have noticed that I am losing muscle on my inner calf. My leg tires more easily, and climbing stairs or stepping up on a curb is difficult with my left foot and leg. I often wake up at night with cramps or spasms in my calf.
I realize that I was one of the luckier polio survivors, and am so grateful for that, but wanted to share my story anyway. Thanks for listening, and God bless all of you who are experiencing PPS.
Hello everyone. I’m 34 years old. I had polio back in 1982. I received this from the vaccine I have a lot of issues with my left leg which was effected the most. I live in California and have been thinking amputation from right above the knee would help me with the pain I have when walking not only in my leg which sometimes to much to handle but also my back due to the length differences in my legs. I have already had a full hip replacement and now on to my second knee surgery in the past two years. I was wondering if there was anyone that could shoot me in the right direction as the doctors that I have spoke with here are more about giving me pain meds than solving the issue. I’m sorry but I would rather amputate my leg than sit at home drugged up because of pain. I want to live a full filled life as I have a family including a 6 year old boy that is confused on why daddy can’t walk everyday and play ball with him like the other fathers. I need this done so I can get my life back.
Hi Joshua – I had the same situation. I had polio for 42 years. After 8 years of doctors recommendation, research, thoughts and prayers I made the decision for amputation. I’m 1 month post amputation now and looking forward to start with my prosthetics in the next 2 months. If you want to keep in touch with my progress just reply back at my e-mail below.
Hi, I am a Kenyan am 51years and a polio victim. I had polio on the eve of my first birthday. My right leg and left hand are considerably weak. I tend to fall occasionally and I lost count of the many times I have fallen and sprained my leg, my leg has fractured once. I have challenges of squatting and cant walk long distances, of late 1 have had pain on my polio affected leg at the ankle and I tend to feel fatigued. However, I try to live a normal life and want to enjoy it to the fullest. I have 1 son.