Poliomyelitis and Polio Deformities: I am a Polio Survivor

I am a Polio Survivor

When I was about seven months old in late 1954, early 1955, I was a very sick little girl.  We lived in Norfolk, VA at the time because my Dad was in the Navy. It was not until about four years later when we were back in Iowa and some of my deformities began to be noticeable that I was diagnosed as a poliomyelitis (polio for short) victim. I still don’t know why I was not diagnosed while I was sick. My parents took me to all of the Navy doctors and none of them knew what was wrong with me. My parents said I was so sad and cried a lot for no apparent reason (I was too young to tell anyone I was hurting), and I had projectile vomiting. I would be in my crib and vomit but none of it would be in my bed….it ended up across the room. The doctors apparently had a hard time believing that one.

 

Iron Lung - Courtesy of CDC/GHO/Mary Hilpertshauser
Iron Lung - Courtesy of CDC/GHO/Mary Hilpertshauser

Polio is caused by:

Polio is caused by a very contagious virus called poliovirus. The poliovirus primarily affects younger children. That is why it used to be called infantile paralysis. But it can also infect older children and adults. It was most prevalent in the summer months and caused many swimming pools and other public places to be shut down. Polio is so contagious that anyone living with a recently infected person will most likely become infected too. It is transmitted through saliva and feces and is passed on when people do not wash their hands after eating or using the bathroom. Once infected with the virus, it can remain in the mouth and throat for about three weeks. It then travels to the intestine. It can remain in the intestine for up to eight weeks.  In subclinical infection and non-paralytic polio, the virus usually doesn't get past the intestinal tract. But in paralytic polio, the virus leaves the intestinal tract and enters the bloodstream, attacking the nerves. The virus may affect the nerves in the muscles of your limbs and the muscles necessary for breathing, causing respiratory difficulty and paralysis of the arms and legs. Some victims ended up in an iron lung to help them breathe.

 

Symptoms of the Three Kinds of Polio

SUBCLINICAL INFECTION

Symptoms include:

general discomfort or uneasiness, headache, red throat, sore throat, slight fever, vomiting

CLINICAL POLIOMYELITIS (NONPARALYTIC AND PARALYTIC)

Affects the central nervous system (brain and spinal cord), and is divided into nonparalytic and paralytic forms.

It may occur after recovery from a subclinical infection.

NONPARALYTIC POLIOMYELITIS

Symptoms include:

back pain, diarrhea, fatigue, headache, irritability, leg pain in calf muscles, moderate fever, muscle tenderness, neck pain and stiffness, pain in front part of neck, pain or stiffness of the back, arms, legs, abdomen, skin rash or lesion with pain, vomiting

Symptoms usually last 1 - 2 weeks.

PARALYTIC POLIOMYELITIS

Symptoms include:

abnormal sensations (but not loss of sensation) in an area, bloated feeling in abdomen, breathing difficulty, constipation, difficulty beginning to urinate, drooling, fever 5 - 7 days before other symptoms, headache, irritability or poor temper control, muscle contractions or muscle spasms in the calf, neck, or back, muscle pain, muscle weakness, asymmetrical (only on one side or worse on one side), sensitivity to touch; mild touch may be painful, stiff neck and back, swallowing difficulty, paralysis

My deformed right foot.
My deformed right foot.

Polio Deformities

Foot and leg deformities are associated with paralytic polio. These include scoliosis, improper posture, uneven leg length, stunted growth of the pelvis, pain in the neck, back hip, knee or foot due to uneven growth, flat feet, flaccid feet, high arch (cavus foot), over pronation (the foot's tendency to roll in towards the body when we walk), mismatched feet, calluses, bunions, corns, hammertoe and claw toe. Since I have deformities, I’m guessing I had this kind. If I had any paralysis, it must have gone unnoticed since I wasn’t walking yet. But I did start walking at nine months. So it didn’t keep me down long. I do have scoliosis, but not bad enough for them to have operated to fix it, although I had a great deal of back pain when I was a kid. I have uneven leg lengths; my right leg is shorter than the left one. When I was about 12 they put some metal staples in my left knee to stunt the growth of that leg so the right leg, which was an inch shorter, could catch up. After a year they were the same length and they took the staples back out again. I was so happy I didn’t have to build my shoe up on the right side anymore. The only shoes available to me to be built up back then were black and white saddle shoes. They were not in style either. Every time I needed new shoes I would always ask if there was anything else that could be built up and it was always a no. I cried every time I had to go. Until one glorious day when the answer was yes….a nice soft brown pair of Hush Puppies! I cried again, only this time it was tears of joy! In my late twenties I had some right hip pain so I went to the doctor and found out I had grown 5/8ths of an inch, but only my left leg grew. So I was back to the buildups on the right shoe. I recently have been able to cut that down to 3/8” and I use a heel lift inside my shoe so no more buildups….again! It makes it much easier to find shoes. I still have to wear a shoe that ties in a wide width which is a little hard to find, especially in a size 6. My right foot is 2” shorter than the left and all of the toes sit up on top of the foot. So I have learned to balance without my toes touching the ground. My whole right side from waist to foot is smaller than the other side, but it is not too noticeable and it can be disguised somewhat with loose fitting clothing. When I was five years old, I had surgery to take a tendon from the left side of my right leg and put it down the front of the leg where there was none. So my foot and ankle roll to the right when I walk which puts a lot of stress on my knee. It probably contributed to the ACL blowout I had when I was in college. Consequently, I have a lot of osteoarthritis in that knee. All of my damage occurred on the right side of my body.

Jonas Salk  March of Dimes Foundation image in the Public Domain
Jonas Salk March of Dimes Foundation image in the Public Domain
Albert Sabin  US Federal Government in the Public Domain
Albert Sabin US Federal Government in the Public Domain

Polio Epidemic

At the height of the polio epidemic in 1952, 60,000 cases with more than 3,000 deaths were reported in the United States alone. The average number of cases fell to 570 cases for the years 1961 through 1965. Polio is now a rare disease in the United States. Many doctors have never seen a case of polio…thanks to the vaccines of Salk and Sabin. The Salk vaccine contains dead polioviruses. It is injected just under the skin. The dead viruses cause the immune system to start making antibodies against the poliovirus. If a person is infected with the poliovirus later in life, the immune system can protect the body against the disease.  His vaccine was first distributed in 1955, but not widely until 1956 – too late for me. The Sabin vaccine is an oral vaccine which contains polioviruses that are very weak but not dead. They produce the same effect on the immune system as dead viruses. Sabin’s vaccine was not in use until 1962. Both vaccines are very effective in preventing polio. In fact, some public-health experts think the disease may be completely wiped out in the next decade, though currently it is still prevalent in Afghanistan, Egypt, India, Niger, Nigeria, and Pakistan. I remember receiving the polio shot. I still had to have one because there are 3 strains of the virus. It was injected into the buttocks. But I never minded it because I knew what polio could do to you. Later, after Sabin’s vaccine was introduced, we were given a sugar cube soaked in the vaccine.

 

Post Polio Syndrome

As if getting polio is not enough, many polio survivors may develop fatigue, muscle and joint pain 10 to 40 years after having polio. Post Polio Syndrome is a condition that progresses slowly and seems to hit harder in cases that had more severe polio. Since it progresses so slowly it is often hard to diagnose. It is not polio all over again nor is it contagious. Not much is known about PPS. They don’t know what causes it or how to prevent it. Or even how to treat it. It is a very mysterious condition. I have some of these symptoms but I have never been formally diagnosed with PPS.

According to estimates by the National Center for Health Statistics, more than 440,000 polio survivors in the United States may be at risk for PPS.

A rare photo of Franklin Delano Roosevelt  Courtesy of Franklin Delano Roosevelt Library
A rare photo of Franklin Delano Roosevelt Courtesy of Franklin Delano Roosevelt Library

FDR’s Role in Polio Research

Franklin Delano Roosevelt, President from 1932 to 1945, was very instrumental in finding funding for the vaccine research. He was a polio survivor too. He contracted the disease in 1921 at the age of 39, older than most polio victims. (Some medical professionals today doubt that diagnosis was correct. It doesn’t matter if it was polio or not. He believed it was and made it his cause.) He wore heavy steel braces on his legs and walking was difficult for him. Most of his time was spent in a wheelchair. He concealed his disability so well that millions of Americans never knew he was a paraplegic in a wheelchair. He also had a deal with the media to never show him in his wheelchair. I doubt any president today could talk the media into that kind of agreement. He founded the Georgia Warm Springs Foundation, a hydrotherapy center for polio victims which later became the Roosevelt Institute for Rehabilitation.

March of Dimes - US Federal Government in the public domain
March of Dimes - US Federal Government in the public domain

March of Dimes

In 1937, after FDR was already president, Roosevelt established the National Foundation for Infantile Paralysis. Comedian Eddie Cantor suggested a plan to help raise money for the foundation, whose goal was to provide care to polio victims and to support research. They called it the March of Dimes and asked that everyone send a dime for polio research to the president. The dimes poured into the White House, and in 1938, the March of Dimes made its first research grant to Yale University. By 1955, the year the Salk vaccine was declared safe and effective, the March of Dimes had invested $25.5 million in research. Although Roosevelt did not live to see the vaccine, he and the March of Dimes were so closely associated that the U.S. Congress honored his memory by putting his face on the dime. The government released the first Roosevelt dimes on January 30, 1946, FDR's birthday and the start of the annual March of Dimes campaign. The March of Dimes is the organization that helped my parents pay for all of the corrective surgeries I had as a child.

Born Just a Little Too Early

We have succeeded in almost wiping out a disease that discriminated against children. Even though I was unlucky enough to have contracted polio, I still consider myself lucky. I could have died or been stuck in an iron lung to help me breathe. Many people have worse deformities than I do. It actually helped build my character. If I was told I couldn’t do something, it just made me more determined to prove them wrong…and I usually did. It also made me more compassionate and understanding of people with disabilities.

 

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Comments 27 comments

bat115 profile image

bat115 6 years ago from Los Angeles, CA

Inspirational. I can relate to you writing this part

"If I was told I couldn’t do something, it just made me more determined to prove them wrong…and I usually did"


Rose Kolowinski profile image

Rose Kolowinski 6 years ago Author

Thank you bat115. Mine was a pretty mild case but it sure did shape my character. Thanks for reading and commenting.


Sheila Whitworth 5 years ago

I agree with what you say about making you more determined to prove people wrong when they said you couldn't do something! I had polio when I was one and had my leg lengthened when I was nine; was diagnosed with PPS when I was in my 40's. I too consider myself very luck; I have a wonderful family and a good job and the determination to make the most out of life.


Rose Kolowinski profile image

Rose Kolowinski 5 years ago Author

Thank you for stopping by and sharing your story, Sheila. When something like this happens, one could wallow around in self-pity or make the most of it like you and I did.


MobyWho profile image

MobyWho 5 years ago from Burlington VT

Thank you, Rose - for a definitive look at polio. I am linking to this article in my brief hub about my experience. I do remember being told that most polio patients had Type A personalities - explaining the determination to Get Well! Go Forward!


Rose Kolowinski profile image

Rose Kolowinski 5 years ago Author

Thank you, MobyWho for reading my story and linking it to yours. I will be over to read yours too.


NancyJo 5 years ago

Rose, Your story brought tears to my eyes as I read your personal memories. I feel like you are telling my story!

I was also born in 1954, acquired paralytic polio as a very young child which affected my entire right side also from the waist down (shorter right side, deformed/weak leg & foot which is also 2 1/2 sizes smaller than left!).. I share similar memories of the visits to the orthopedic Dr. and getting the corrective black & white shoes, and was so happy when a year came around that the cute saddles shoes (not mine of course) were in style.. at least then I could blend a little bit better with the other kids. The Dr. had told my parents I had a 'touch' of polio and it was left at that ... my entire life.. and was never treated differently.. so I never really dwelled too much on the limitations it caused me.. I am thankful my case was relatively mild compared to others.

I really enjoyed learning from your article the relationship of the March of Dimes, FDR and the dime!

Thank you so much for sharing your story and allowing other polio survivors to know they are not alone.


Rose Kolowinski profile image

Rose Kolowinski 5 years ago Author

I'm sure there a many out there with similar stories to ours. Most younger people have no idea what the disease was like and how it is still affecting those of us who had it as kids. Thank you for taking the time to read and comment, NancyJo.


Michelle Bell 5 years ago

Rose your story touches me. I am a Rotarian that is doing research for a meeting in November. We are fundraising to iradicate Polio in the remaining 4 countries it exists in. I would love to talk to you more.


Rose Kolowinski profile image

Rose Kolowinski 5 years ago Author

Thank you, Michelle. There is a place to email me through this website. It is on this page or my profile page - an envelope with "Contact Rose Kolowinski".


conradofontanilla profile image

conradofontanilla 5 years ago from Philippines

Despite detractors and distractions, Salk stuck with his belief that killed-virus vaccine would work. I posted in HubPages "A Theory That Explains Why The Salk Killed-virus Polio Vaccine Works." My children had taken the polio vaccine.


Rose Kolowinski profile image

Rose Kolowinski 5 years ago Author

Thank you for your comments, conradofontanilla. Good for you for having your children vaccinated. Hopefully there is success in wiping out the disease worldwide.


conrado fontanilla 5 years ago

Salk polio vaccine gives a jump start in the development of vaccine against dengue fever (yellow fever) which is a menace in my country, also caused by a virus. I am preparing a Hub on the toll of polio in the United States since 1916 thru to 2000.


maric 5 years ago

I feel so much better after reading these comments. I always feel so lonely and different when it comes to my physical appearance. I was struck with polio when I was three months old. My right leg is smaller and my calf did not develop. I had three surgeries to correct my foot but my the calf never developed. All my life I have struggled with shoes and I don't like to wear dresses or shorts because people stare at my deformed leg. My parents or siblings never treated me differently so I developed a very strong character. I was born in Mexico and immigrated to the US with my family over 40 years ago. It is here that other kids and society in general made me more aware of my deformity and the fact that I am "different". It did not stop me from attaining my goals. I finished college and I am a professional. I do have limitations but I am grateful that my physical deformity has not prevented me from succeeding in life. I am happily married and have children and grandchildren.


MobyWho profile image

MobyWho 5 years ago from Burlington VT

I am constantly amazed at the number of people who have no idea that post-polio syndrome even exists! I have no back muscles left (thanks to over-doing on the golf course) so use a walker or two canes to stand up. The first comment,"Oh, you have arthritis?" "No, I had polio and it affected by back muscles." Disbelief follows. One by one, we pass the word.


Rose Kolowinski profile image

Rose Kolowinski 5 years ago Author

Thank you maric for your comments. It's good to know we are not alone. My calf has recently lost a lot of muscle due to a surgery to correct damage on my polio affected foot and ankle. I hope I can get some of it back but only time will tell.


NancyJo 4 years ago

Rose, Just checking back to your site & saw you had surgery to correct damage to your polio affected foot & ankle. I hope by now you've gotten some of the strength back in your muscles.

I too had major surgery to my right foot/ankle about 2 years ago. The operation restructured my foot, flattening the arch, lining the foot up with my leg & and fixed the tendons so it wouldn't roll outward all the time. I still have no calf muscle but overall it was a success as I now have more stability. Still glad I went through it...

Again, hope things are going well for you.


MobyWho profile image

MobyWho 4 years ago from Burlington VT

Thanks for keeping up the posts - I've been noticing my rt foot slipping away from my body; had no idea there was help for that. Haven't seen a physiatrist for a couple of years...better get back to one. Glad your op was successful.


Rose Kolowinski profile image

Rose Kolowinski 4 years ago Author

NancyJo - thanks for checking back. My ankle and foot are doing just fine now. It was a long rehab but well worth it. Glad your surgery helped you too.


Rose Kolowinski profile image

Rose Kolowinski 4 years ago Author

Thanks, MobyWho. Hope you get your foot checked out and see if they can help you too.


Mike Izdepski-Ladd 4 years ago

I had polio at age 2, in 1944. I had the great fortune to have corrective surgery to straighten my left foot and shorten my right leg. I have different shoe sizes due to atrophy of my lower left leg, a 91/2L and 12R, no lifts. I wear an AFO on my left leg/foot. I buy my shoes from LL Bean, in Freeport, Maine; they missmate them for a nominal charge.

Like most of my fellow polio victims I have tried just about every physical challenge. I was an accomplished competitive swimmer, hiked mountains and skied.

I salute all who try.


Rose Kolowinski profile image

Rose Kolowinski 4 years ago Author

Thank you for sharing your story, Mike. It's good to know how others have dealt with the same afflictions.


Julia de vera 4 years ago

Hi Rosei just stumbled your page. I have the same case as you but my only problem is my feet's arch is too high so i have difficulty in walking and i cant wear any high heels shoes so its quite challenging to buy shoes. May i just ask have you done surgery? If yes were there improvements? Since I also want to have surgery but Im in asia so very rare doctors here can perform surgery. Hope you dont mind can i get your email add id like to ask you some more queations thanks!


Rose Kolowinski profile image

Rose Kolowinski 4 years ago Author

Hi Julia. Thanks for the comments. You may email me through this site by going to my profile. And yes I have had several surgeries and I have seen improvements with each one.


Mary 3 years ago

I have just found this web site and so glad to hear your stories. I contracted polio in 1944 at age 6. Through the untiring effort of my family doctor, I was admitted to Warm Springs in 2 weeks. I was very fortunate because there was a long waiting list. I had the paralytic type affecting my right side from the waist down and some in the back. I stayed in Warm Springs for 9 months receiving daily physical therapy that included full body hot packs and exercise, but no walking. When I left, I was able to walk with the aid of a brace. About 3 years later I returned to have 2 surgeries - the tendon replacement in my leg and a stabilization of the foot. My right leg is 1" shorter than the left, is smaller with no calf muscles, and shoe size is different - 5 and 7. They released me, saying they had done all they could, but I should have had further surgery on my toes because they withered and now I have a hammer big toe. Because of the pressure, the toe pad has worn away and I have to wear a cushion to relieve the pain. As so many of you have said, this affliction has certainly given us courage and tenacity. I had limitations, but I pushed the envelope every day. I consider myself so very fortunate. When I was in Children's Ward, I met a girl my age (6) from Brazil who had a brother there also (3 yrs. old) in an iron lung. We were later roommates again when we returned for surgery. Someone hated the saddle oxfords, but I was stuck with the Brownies with a built up heel and an added piece around my ankle. I am still limited to a sandal type shoe with straps to keep them on. I refused to have the build up after the surgeries - some days I limp a little; some days I don't. However, the older I get the more I realize I have limitations that I don't believe I would have had if not for the polio - mostly the stiffness in my back. God Bless all of you that that have survived and actually been strengthened because of this affliction. I am so happy that it is a thing of the past!!


Rose Kolowinski profile image

Rose Kolowinski 3 years ago Author

Thank you Mary for reading my story, everyone else who has shared theirs, and for sharing yours with us.


Fivehundred2go 6 months ago

I just ran across this writing. I recently was told after much testing to eliminate other causes, I have a high probability of having had polio as a toddler in 1955. Thank you for sharing and I think I need to begin placing my thought in order.

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