My Logo represents that many of us after polio was able to stand and walk but with the onset of PPS our lives went into reverse.
"Franklin’s illness proved a blessing in disguise, for it gave him strength and courage he had not had before. He had to think out the fundamentals of living and learn the greatest of all lessons-infinite patience and never-ending persistence.”
~Eleanor Roosevelt, from her autobiography
President Franklin D. Roosevelt
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New - June 24, 2014
Excerpt from European Centre for Disease Prevention & Control
WHO issued temporary recommendations for reducing and controlling the spread (i.e. importation) of wild polioviruses from polio-infected countries. These recommendations apply to people who visit or live in countries where poliovirus is still circulating and have direct and immediate consequences for EU travellers and EU residents.
There are 10 polio-affected countries according to WHO:
Three ‘currently exporting countries’ (Pakistan, Cameroon and Syria) from which the virus has been carried to other countries in 2014.
Seven countries (Afghanistan, Equatorial Guinea, Ethiopia, Iraq, Israel, Somalia and Nigeria) which are affected but are currently not exporting poliovirus.
Excerpt from: European Centre for Disease Prevention and Control
Reported on Press TV
August 15, 2014
Nearly 40 kids infected with polio in Syria, Iraq: UN
Thirty-eight children have been paralyzed by polio in Syria and Iraq since October last year and there is a high risk that the disease will spread further in the Middle East, the United Nations says.
“It is now even more imperative to reach every child multiple times, and to do whatever we can to vaccinate children we could not reach in previous rounds," said Maria Calivis, regional director for the Middle East and North Africa at the United Nations Children's Fund (UNICEF), in a report on Tuesday.
The disease, which broke out in Deir al-Zor, the largest in the eastern part of Syria, has infected 36 people in the crisis-hit country so far.
Most of the Syria cases were recorded in Deir al-Zor, but others were in Aleppo, Idlib, Hama, and Hasakah.
"Right now we estimate that there are 765,000 children inside Syria who live in areas that are hard to reach. And as long as we don't get full and regular access to these children, the chances of polio spreading further will continue to exist," said Juliette Touma, a spokesperson for UNICEF.
The two cases in Iraq are children living around the capital Baghdad.
Between December 2013 and June, a polio vaccination campaign was launched in seven countries of the Middle East, which reached a record 25 million children, according to UNICEF and the World Health Organization.
A second phase of the campaign is planned to take place from August.
May 12, 2014
A Polio Survivor.....
Note: I searched the web for as much information as possible regarding Neil Young (Singer and Song-writer) as a polio survivor. In my search I found very little information of how polio might have influenced his life and career. The bits and pieces of information I did find was vague but obvious the virus was severe. Finally I found a webpage called "Jambase . com". Below I am placing an excerpt from their article with the most information regarding Neil Young's experience with polio. Of all the songs by Neil Young, "Heart of Gold" was one of my favorites. I did edit a few "words" in the excerpt below....
"On August 31, 1951 a five-year-old Neil Young was pulled from sleep by pain in his shoulder and a high fever. Even before they got him to the specialty hospital in Toronto it was clear he had contracted polio. "D**n near died. *****, that was awful" recalls Rassy (his mother) inSkakey.
Polio didn't take the child's life, but it would have an ongoing impact on everything Young would encounter from that day on. It ravaged his body, leaving him frail, vulnerable, lacking confidence and with serious, lasting physical ailments. The disease heavily affected his motor function, so much in fact that Young says when he closes his eyes he can't feel the left side of his body.
"There was a time back in the early '80s when I couldn't even lift my guitar up over my shoulder because my rotary cuff was so gone," recalls Young in between sips of cranberry juice. "I had post-polio syndrome and all this s***. My body was falling apart."
Fifteen years after battling polio Young would find himself afflicted with another debilitating disease: epilepsy. In 1966, just as Young's first prominent band, Buffalo Springfield, was getting off the ground, the seizures began and came back with increased frequency. It got so bad that the Springfield had a plan for when Young would go into a seizure while performing. There were signs that a fit was coming on and the band would throw on the house lights while guitarist Richie Furay grabbed Young's Gretsch guitar as he went down. They would then carry Young off the stage, often reaching into his mouth so he didn't swallow his tongue."
Please visit Jambase for the full story.
Excerpt from the website JamBase at http://www.jambase.com/Articles/14655/Neil-Young-Chaos-Is-Good/3
- A MESSAGE FROM THE OWNER AND CREATOR OF THIS WEBSITE -
UPDATE (Aug 15, 2014)
I received an email from a gentleman from Australia conducting research on polio. He had four questions he asked if I would answer. I felt they were excellent questions and took a great deal of thought on my part. Some answers contain very personal information but I feel if it can, in some way, help in the research of polio, then I am willing to allow this information on the internet......
Below are my answers and those of visitors to this website. If you would like to have your own answers posted here, please email letting me know if you want them published and if so do you want your name published with your answers or do you wish to be anonymous.
Thoughts on Polio for the 4 question research inquiry.......
1. How did polio affect your social life?
My Answer: I was stricken with polio in October 1959, just a few months from my 4th birthday. I was severely affected from the waist down and was forced to use crutches and wear full length metal braces with shoes attached. Due to the residuals of the polio my gait was greatly affected. While growing up, both adults and children would stare at me and the adults would nudge their children and quietly tell them, “He is a cripple, don’t stare.” I would always look directly at them, not saying a word, and hide the hurt but give them a genuine smile and move along.In the third grade my teacher called me before the class to read a story we had to write. I was embarrassed about the way I looked to my class mates and afraid my story would sound “stupid”. As I stood in front of the class I began to cry and the more I cried the more embarrassed I became. Finally, my teacher softly said, “It is ok James, you can sit back down and I will read it for you.” In school some children would laugh at me or mock my way of walking. Once again, I would look up at them, hiding the hurt and give them a smile. My family treated me as though I had no limitations and encouraged me to do whatever I felt I could do. Never once, through my whole life, did they ever make me feel I had a disability. At the age of fifteen I attempted to take my life because I felt I could’t take being “a cripple” for the rest of my life. It was about this time I began to look down at the ground or at my shoes when walking or meeting someone for the first time. Again, years later when the Post-Polio Syndrome slammed into me full force at age 55, I once again tried to take my life. Thank God I survived and was sent to a psychiatrist who diagnosed me with Severe Depression and Social Anxiety. Now at age 58, I was forced to retire as a Human Resources Specialist from a College I had been employed at for 34 years. PPS was winning. I began to feel worthless and felt I had lost all purpose in life. Fortunately I was approved right away for Social Security Disability and began to draw a small retirement pension. It finally dawned on me, all would be ok, I COULD and would keep my independence even if I could no longer work. Now I go to Church when I can (the social anxiety still has a grip on me) and I feel life really is worth living. I am determined, for as long as I live, I will NEVER ALLOW POLIO TO GET THE BEST OF ME!
Anonymous from email July 25, 2014: Hard to isolate the impact of Polio. I got polio very young so I have little in my own experience to compare not having it. Secondly, I went to 13 different schools in 6 different cities. Both parents had emotional and substance issues. Anyway, I was always the new kid, always the handicapped kid. I did have a lot of fights compared to other people I knew.
2. Did polio affect the way the people in your life treated you?
Yes, I suspect there were those who felt “pity” for me. I could see it in their faces and often in their actions. The good thing is I always had God in my life and he gave me a gifted smile that not only gave me confidence but would often bring a smile to others. No matter how people treated me, it reinforced my compassion, forgiveness, trust, honesty and a love for others that at times was/is so powerful it can actually “hurt”. I lost many friends and potential friends due to the Social Anxiety and Depression. No one seemed to connect the psychological and mental problems with the post-polio syndrome and those who did are still the few closest friends I have.
I believe that whatever behaviour was in a persons nature seemed to be amplified.
Those that were empathetic or kind, were a blessing to me. Further, there gave me more of that behaviour than they gave others. Those that were bullies or cruel were also more that way with me.
3. What are your views on the recent Anti-Vaccine Movement? If you could speak with its supporters, what would you say?
When I read in the news about a mother, father, government or other entity speaking out against the vaccine to prevent polio, I feel a variety of emotions. Shock, anger, disbelief, sadness, hopelessness and most of all I visualize what a nightmare children stricken with polio will have to endure due to the ignorance of others. The medical costs through that child’s life (if he or she survives the polio) will likely be beyond their reach. Even now in the USA, many polio survivors have very little to no resources to pay for special medical care and assistive devices. The majority of physicians and health care workers in the US have no knowledge or time to care about the special needs of polio survivors. Please give your child the gift of love and allow your children to be given the vaccine because Polio CAN be eradicated!
The Anti Polio Vaccine movement is not statistically nor ethically a valid viewpoint in North America.
Religion, I will not debate in this short note. Anti vaccine supporters have the right to voice their opinion as I do. My opinion is that they should be charged with child abuse, the same as if they beat their children or refused to feed, shelter or clothe them.
4. As a survivor of polio, how did surviving polio change your perspective of the world around you? has it changed for the better, or the worse?
I think post-polio has made me hyper-sensitive towards people who are mistreated. I have always felt the need to help others and try to make changes for the better. I hate it when people grumble about what they have or what they want when it comes to wasteful materialist things. I’m grateful every morning I get up that I still have my independence, have access to adaptive devices such as hand-controls for my car, braces for my legs, shoes for my feet, a roof over my head, food to eat and the blessings are endless. Even though I am among what I see as “the forgotten few”, I still know I am blessed to live in a country such as the USA. I am proud of the polio-survivors of the past who paved the way for a better life for the polio-survivors of today. Post-polio has made me a better man than I believe I might have been had I not been stricken by polio. However, at the same time it angers me that I have come very close to allowing polio to get the best of me.
As I know very little outside of being a survivor I can only say that it certainly helped form my perspective of the world. Would I have a different view if I never had polio? 4or Sure! Better or worse I can only guess. My perspective of the world is this. There are all kinds of people, circumstances, beliefs, knowledge and intentions. Pay attention to what is going on. Be aware but not wary, love and protect you and yours as best you can.
From James: Many thanks to "Anonymous", who is a polio survivor, for sharing comments regarding the "four questions".
A personal comment: "Education (self-education) regarding polio and post-polio effects is YOUR responsibility! Most health-care workers and physicians know little to nothing about the residuals of polio or how polio affected each of us in different ways. I thought doctors knew everything, so why should I take the time to learn what was happening to me? Yes, dumb I know and I learned a lesson. I had to know more about polio and it had become MY responsibility to educate my Doctors. Some have been open-minded and others just turn me off and close their minds to what I have to say. When that happens, thank God I have the freedom to "shop around" for a physician that I can put my trust in. I still haven't found that Doctor (even though my current neurologist is doing the best he can) but then again, I'm not giving up hope.
To better understand polio, if at all possible, purchase Dr. Richard Bruno's book "The Polio Paradox".
Above is a picture taken as I received my retirement resolution from the President of the College where I worked for 34 yrs. This was one of the hardest days of my life. PPS forced me to retire early. I loved my job and the people.
May 21, 2014
This had to be the hardest subject I have ever tried to put into words. Once again I stress to everyone to purchase Dr. Richard L. Bruno's book, "The Polio Paradox". The polio virus appeared to be confusing to understand because it was so selective but it really is easy to figure out once you read the book.
I received the following email but will respectfully withhold the name as I do not have their permission:
May 19, 2014 - "I hope this finds the person I am needing to contact. I seen your web page on Polio survivors. I contracted this disease when i was two years old. I am 45 years old now and i think I am starting to feel some post polio effects.
Can you please tell me what some real life symptoms may be and what physical aspects a person may endure.
Thanks for your time."
My PERSONAL experience with what eventually became Post-Polio Syndrome.......
There is no doubt in my mind, from the symptoms you described; you are having the beginnings of the "Post-Polio Syndrome".
For me, I came down with polio when I was almost four years old. Both my legs, from the waist down were severely affected.
When I first caught polio, until I was about twelve, I had to wear what they called a "corset" to keep my spine straight. It was made of a thick cotton material with flat metal bars sown into the material. There were several straps I had to buckle-up with to keep the corset tight around my waist. It went from my upper back all the way down to my tailbone. Now that I look back on the experience it is obvious, the polio DID affect my upper extremities but there was never any atrophy or severe weakness until a couple of years ago.
As for my legs, I had to wear (throughout my life) full length metal braces from the top of my thighs to just above my ankles. All leather orthopedic shoes are attached to the braces. I had to use crutches until I was about 18 and now I have gone back to using them.
My legs are the same length but shorter than normal and extremely atrophied from the top of my thighs down. My right foot became a drop foot and over time became deformed, twisted, with the bone pushing out from the arch. At age twelve I had two surgeries on that foot and to this day I have more movement in it than my left.
Now that I look back on it, I would say my PPS symptoms started when I was around 40 but I went through denial and ignored the warning signs.
I was able to mow the lawn with a push mower right on up until I was about 45. After a number of years of mowing, the few muscles I could use to walk began to twitch and weaken but I thought the more I used them the better it would be to strengthen them. One day after cutting the grass, I went to my door, grabbed the edges of the frame to balance myself and lift my foot to the step.......I found I could not! From the waist down I felt strange as though my muscles were just "limp", I don't know how else to put it in words. I suppose you could say it was paralysis.
I began falling.....ALOT. It didn't take much for me to trip and I often slipped, even if it was just a drop of water on the floor. Worse of all, my knee or both knees would suddenly jerk outward or buckle and throw me to the ground. My arms and hands would take the full force of the impact to the floor or ground. Over time I ruptured tendons in both my arms and had severe pain in my shoulders from the falls. During some falls, my leg braces and shoes could not protect me and I would bruise my knees resulting in days of severe pain and swelling. One of my worse falls was when my right knee buckled and as I went down, my right shoe bent in the middle causing me to sprain it and fracture four bones.
Through time my legs began to feel strange, I can only describe is as an uncomfortable feeling. I began to develop muscle jerks, twitches and spasms. Three years ago the spasms and jerks stopped and the remaining muscles wasted away and now my legs are nothing but skin and bones. The guy who repairs my leg braces had to line them with foam material to keep my legs from flopping around inside my braces when I walked. Speaking of walking, I began to stagger like a drunken man as I was losing all balance. At the suggestion of Dr. Richard Bruno I began to use a wheelchair at work and two crutches when walking. A couple of years ago my feet and legs began to get stone cold as if they were packed in ice! My cardiologist was puzzled by this and did all kind of tests. My current neurologist was convinced it was poor circulation until my cardiologist ruled that out. I learned from Dr. Bruno that this is part of the PPS as described by him in his book, “The Polio Paradox”.
Most of what I described above was physical symptoms but I also began to develop both mental and psychological problems.
Mentally, I began to have trouble with memory, extreme mental fatigue, sleepiness during the day and sleeplessness at night. Even my speech was being affected and my voice would become weak to the point people asked me to repeat myself, At times I would have to search for words and they would come out slurred. My attention span became short and I could no longer stay focused.
Psychologically I began to have difficulty controlling depression and worse I had developed a bad case of anxiety. Actually I think I have had both for years but was able to deal with it (or I should say I became good at hiding it). At around age 55 (I am now 58) I tried to take my life. Dangerously and almost fatally, the depression and anxiety had slammed into me. I had warnings but I ignored them and hid them as best as I could. Later when I began to get professional help, I was told I had severe depression and social anxiety. Now they are mostly controlled by my faith and medication.
I never really believed Post-Polio Syndrome was real because one Neurologist told me, “You don’t have polio and there is no such thing as Post-Polio Syndrome because it is virtually impossible to diagnose.”
this has to be the hardest thing I have ever had to reflect back on and put it all into words. It is just not possible for me to list all that has occurred to bring me to where I am right now.
As for physicians, I am at a loss as to what I can suggest to you. I have had physicians who would look at me with pity but could tell me little to nothing if it was post-polio related. I don’t mind saying I see a psychiatrist every three months and they have consistently refused to believe PPS could have had a psychological impact on me. My cardiologist is completely understanding of the fact I have PPS and my cold intolerance, increased anxiety when I am in a medical environment, and other symptoms are all PPS related. He has actually accommodated me by allowing me to come in for check-ups every six months rather than three. He knows me well now and has confidence if I have a heart related situation that I will get to him immediately!
My current neurologist of four years is now completely understanding and accommodates me in anyway he can. In the past he absolutely refused to connect the mental fatigue and psychological (depression and anxiety) symptoms to post-polio. Even as a neurologist I am certain he didn’t fully understand the consequences of polio and how it affected the neurons. After long talks from me (thanks to Dr. Bruno’s guidance and his book), physical exam, PT reports/notes, MRI results, blood tests, copies of literature on PPS and my own complaints, he now tells his receptionist and nurse, “James has PPS.”
As polio survivors I think most all of us have a “Type A Personality” and “can’t” is not in our vocabulary. Through the Grace of God we often accomplish what we set out to do. Unfortunately, when it comes to Doctors, we tend to hold back what we are experiencing. I suspect we are afraid we might come across as a hypochondriac, a complainer. We are used to being non-complainers and dealing with our ailments quietly and in our own way. Today we have to be assertive, not demanding or aggressive but assertive and let medical professionals know how we are really feeling and how post-polio could be affecting our quality of life and our health. The way I have interacted with my neurologist has been with honesty and openness. I have made suggestions, for example; a need for a muscle functioning test, blood tests, refurbishing of leg braces and admitted to having sleep problems.
This all takes time and the cost can be considerable. I was fortunate to have had a great employer with the best benefits anyone could hope for.
Post-Polio Syndrome is a FACT of life for many polio survivors. We fought hard to live normal productive lives and now, we have another battle, to educate ourselves about Polio and the post-polio so we can pass this on to our physicians. We are getting a double whammy, PPS and the aging process. I for one refuse to lose my independence without a fight!
Update: As of August 15, 2014 there has been no information sent to me regarding Karen's request. There is always hope and I will keep this email on my website for as long as it takes.
Posted on May 10, 2013 - Just recently I received an email from a lady who greatly impressed me and I felt the need to post it here with her permission. If you can help her in her mission, please email me with whatever information you can provide and I will forward it to her.
"I am on a mission! My husband contracted polio when he was 2 y.o., in 1955. He spent a great deal of time at the Shriners Hospital in Shreveport, having 3 surgical procedures and months of in-hospital time. His last stay there was when he was 15/16, around 1968/69, when he had a surgery to elongate his hip muscles and give him more mobility in his right leg (where the polio had attacked). His name is Stephen White.
As he grows older, he continues to express a deep desire to reconnect with the friends that he made during his stays at Shriners, especially his last one. I have tried social media, but have had no luck making contact with anyone. I have sent requests to Shriners, but no response. Steve will never forget their faces and their first names, but without a last name, I have no way of trying to find these people."
Can you help? Is there a site that you know of where you can post who you’re looking for and share your info?
Thank you so much for your time and assistance,
EMAIL From Aymen:
I just wrote a poem titled as Polio and want to share it with you.
My Poem “Polio” depicts the voice of Polio Survivors, who is facing countless difficulties in all walks of life.
Let's wipe out polio together and support every polio victim for a better tomorrow. Though, the best way to escape polio is to get Polio drops.
We want a polio-free World.
Polio Vaccine Workers Killed In Nigeria
February 9, 2013
(As of this date Oct. 26, 2013 the killings of innocent Polio Vaccination Workers are killed trying to help eradicate polio from three countries left in the world where the virus continues.)
Update: As of May 16, 2014 Dr. Bruno continues to maintain the Post-Polio Institute
The Post-Polio Institute and
International Centre for Polio Education
Dr. Richard L. Bruno website states.......
"For almost thirty years, Dr. Richard L. Bruno has studied and treated nearly 6,000 polio survivors and is the world's leading expert on Post-Polio Sequela (PPS)."
My personal comment regarding Dr. Richard Bruno:
Without Dr. Bruno I don't know what I would have done when PPS began to set in quickly. I saw doctor after doctor and none appeared to have knowledge of the residuals of polio. All seemed at a loss of words when I spoke of my symptoms.
Thanks to Dr. Bruno's advice I made changes to my home and have chosen to "slow" down a bit to conserve the strength I have left. I have taken early retirement and was approved for SSDI thanks to Dr. Bruno's SSD ruling he helped to write and approved for the benefit of Post-Polio Survivors with Post-Polio Sequelae (Syndrome).
Dr. Bruno gave me hope and I no longer feel lost and alone in this battle to keep my independence.
To all of you who feel you have no one, believe me, you do. It could take alot of research on your part to find the help you need but it is out there.
Sincerely and Respectfully,
PS: I strongly recommend Dr. Bruno's book, " The Polio Paradox" to ALL polio survivors and or people who have family members and friends who were affected by one of the three types of polio. Medical professionals, Medical Universities, etc should read this book to give them a better understanding of this virus and how to treat baby boomers for PPS. Unfortunately the book is somewhat expensive but the hardback I have is very well made and I often return back to it as reference. Click the book below and it will take you to Amazon dot com giving you more detail. You can purchase either the hardback, paperback or a Kindle e-book version. If you are a family member, friend of a polio survivor or a medical professional and already own the book then please loan your book (or buy a new one to give) to someone you know it will be beneficial to.
You may also want to check out "Polio Survivors Handbook" ebook
suggested donation is $5.50 at this current date of Aug 15, 2014.
If interested please click here or the book to your left to be taken to
"International Centre For Polio Education".
PolioToday.org is constantly updated and appears to have many members....including me!
This site is a must for all Polio Survivors!
PolioToday.org is published by the Salk Institute for Biological Studies. The website is designed to raise awareness of post-polio syndrome and to be a resource for polio survivors. Dr. Jonas Salk, who developed the first safe and effective polio vaccine, founded the Salk Institute in 1960.
Visit PolioToday.org to see more video's of life stories from polio survivors.
If you know of sites like Polio Today please let me know so I can share the link with other Survivors.
THANKS FOR STOPPING BY!
Added Oct. 26, 2013
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Sorry I am a bit behind on my Blog but I promise to get back to it again soon.
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Sorry, I just discovered an error in my email address and it has been corrected.