"The test of our progress," said Roosevelt, "is not whether we add more to the abundance of those who have much; it is whether we provide enough for those who have too little."
~ President Franklin D. Roosevelt ~
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YouTube Video of Polio Crisis
Posted November 9, 2013
Thank you Michael Stone
who appears to be the one to share this with the public on YouTube.
October 26, 2013
A Polio Survivor.....
Note: I believe I will begin using this section for YouTube's or other sources of Polio Survivors who made a difference in the lives of others......hummm.....I suppose that could be ALL survivors of polio! As for this post on "Doc Pomus", I was having a bad day at work this past Friday and a co-worker, Melba, told me about having seen a biography on TV the other night about the man who wrote a number great songs but one was called, "Save The Last Dance For Me". I told her I remembered that song well but had never heard of the name Doc Pomus but would look it up when I got home. This is what I found and for some reason it lifted my spirit.
"Alex Halberstadt explains that one night, Pomus found a wedding invitation in a hatbox, and back came his most vivid memory from his wedding: watching his brother Raoul dance with his new wife while Doc, who had polio, sat in his wheelchair. Inspired, he stayed up all night writing the words to this song on the back of the invitation. Shuman had played him a soaring Latin melody that afternoon, and he wanted the words to sound like a poem translated into English - something along the lines of Pablo Neruda. By the second verse, a hint of jealousy and vulnerability creeps in with the lyrics, "If he asks if you're all alone, can he take you home, you must tell him no." Pomus ended his night of songwriting by writing down the words that would become the title: "Save The Last Dance For Me."
Excerpt from the website SongFacts.
- A MESSAGE FROM THE CREATOR AND CARETAKER OF THIS WEBSITE -
This site is dedicated to Polio Survivors in the 21st Century along with their family, friends and the medical community whose lives have been touched in some way by the polio virus and the residuals of this complex but yet simple to understand disease.
Since I began this site some years back, I have received a few emails from polio survivors and their family member asking me about organizations that can assist polio survivors with medical needs such as adaptive devises for themselves and their homes. I have had questions that is often begging me for advise on locating physicians or specialized clinics who is knowledgeable of the residuals of polio to help them adapt to the changes that is affecting us physically, mentally and psychologically as a result of the late effects of the polio virus. It saddens me that I cannot answer any of these inquiries. All I can do is try to be more diligent in maintaining this website and providing links to up to date sites with resources that might assist those of you who stumble across this site.
I have been dealing, for the last few years, a decline in my physical, mental and psychological health. The symptoms started out slowly, almost unnoticeably, only to escalate very quickly. I went from 160 pounds to 124 pounds within 2 months and most all was in muscle. My leg braces flipped flopped on my legs that had atrophied to nothing but skin and bones. My Orthotics expert had to place a type of (thick) cushion as an overlay to the leather so as to get the braces to fit more securely.
My mental fatigue has increased to the point that by noon (this is the only way I know to describe it) my brain was like a computer crash. I began to have difficulty organizing my words/thoughts. My memory began to fail me and I would repeat something I had said already. I would have to search hard for the words I wanted to use. I would find myself staring at my computer screen trying to focus rather than drift off into other thoughts.
My psychological health was even worse. As time passes I find myself having difficulty going out into public and have anxiety attacks just from having to answer the phone. I had always had a bit of depression and anxiety but could deal with it. However, it came crashing down on me in the early part of 2011. I was diagnosed with severe clinical (non-psychotic) depression and social anxiety. It is a long story and one that makes me grateful to be alive but then again, God protected me and still does. My spiritual health is stronger than ever. I was baptized on October 9, 2011 which only strengthened my Christianity, spirit and my love of life and compassion for others.
As of this date I continue to work full-time in Human Resources and now use a wheelchair at work and two crutches (most of the time but I'm stubborn) at the advice of Dr. Richard Bruno. Also my employer has been great in making accommodations, changing my work hours and giving me less stressful job duties.
I continue to loose muscle tone and I my reflexes are getting worse in my upper extremities. I have had tendon repair surgery to my left arm after so many falls and surgeries to both hands for painful trigger fingers. I never ever considered the possibility of muscle atrophy to my upper extremities but can see it happening. Dealing with the post-polio symptoms (weakness, muscle and joint pain, etc) and the aging process has been and is a struggle, but I am fighting this second fight with the residuals of polio with all the physical, mental and psychological strength I have in reserve. I will NEVER let it get the best of me and without my Christianity and faith, I would be an empty shell. PPS may weaken me physically and mentally but one thing is for certain, it can't weaken my spirit.
Now I see why so many on-line polio websites tend to be out of date or no longer exist. As polio survivors and as we grow older, most of our strength is spent on getting through one day at a time. Unfortunately for me it has struck home and affected my ability to maintain and improve this website, so forgive me if you come here and feel disappointed. Just remember, there is still much support on the internet. Just "Google" the word "polio" and hopefully it will take you to what you need. In the mean time, I will place links to sites with other polio survivors, literature or anything else that has helped me and maybe, just maybe, it will help you too. Before you leave my site please keep this in mind:
"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, PLEASE purchase Dr. Richard Bruno's book "The Polio Paradox". He never fails to answer my emails and has been a great support to me.
Within the Polio Community/History I have two hero's and they are Franklin D. Roosevelt and Dr. Richard Bruno. Dr. Bruno is alive and well and has contributed so much to the modern day Polio Survivor's Community and to me. I am forever grateful to him.
I will keep this page updated for as long as I can. I can now confidently announce I now own the domain name "www.SurvivorsOfPolio.com" until August 2021!
PLEASE if you know of anyone in the medical profession, organizations, individuals etc who can help inform us I hope you will send those links to me for this page. It will help others save time trying to find the much needed assistance we all need or will need. We HAVE to help each other for we are a very "special group" of people and I am proud to be part of that group.
For this site I have chosen to be an affiliate to the March of Dimes and you will find their banners and other requests for donations on almost every page of my website. I and other survivors owe a great deal to the organization, please give if you can.
I would like to include here a YouTube called "2010 History Day Project" by Jack Campbell about FDR and a timeline of his life with polio. I felt honored that this young man included a picture of me and two of my sister's on Easter Day of (if I remember correctly) 1960 or 1961. I thought I was a hotshot in my Easter suit. When I first came down with polio in October 1959 I was treated for three months at The Warm Springs Foundation Hospital, founded by FDR. Like FDR, to this day I still wear leg braces similar to those he wore.
Sincerely and Respectfully Yours,
PS: My official retirement date from my job of 34 years is January 31, 2014 but my last day will be November 20, 2013. I work in Human Resources at my local College and the psychological impact is worse than I thought it would be but my early retirement and being forced to apply for SSD is one of the worse things I can think of. I'm trying to be positive and know this is a life change that was long in coming. As I was working on this site, a thought suddenly occured to me, "Bubba you have to return to visit The Roosevelt Warm Springs Hospital once again. It has been far too long since I last saw it and Pine Mountain. It helped to save my life, ease my families financial burden and give me a future.
Added November 5, 2013
Recommended Website - Permission to place the link to these websites have been granted as of 10.30.2013 -
Click the banner to visit:
THE GOAL IS TO ERADICATE POLIO WORLDWIDE.......
Note from James: I reveived an email from PGEI suggesting I also might want to provide a link to Rotari International. As one polio survivor to another, give if you can but if you can't it's ok, it doesn't suggest you don't care. I think I can say for us all, we want with all that makes up who we are to see polio eradicated from the face of this planet during our lifetime. It is for the children just as many of us were stricken as children. As survivors we have an idea what the children who have been stricken with the virus in Afghanistan, Nigeria, Pakistan and now Syria, will have to face. As for us, we have to be strong, hold our heads high and never ever give up! Some may dispute this but now as adults I feel we are the forgotten. We struggle from day to day. Many of us can no longer afford the adaptive devises we so despartly need and many insurance companies refuse to help. Physicians and health care workers in the US know little to nothing about post-polio. There are times we just want to say, "I won the first battle but now I am losing the second battle" but as Dr. Bruno has reminded me, that is NOT true. To the polio survivors who read this, just know my heart goes out to you. Be strong and may God Bless us all and most of all I hope the day comes when no child or adult has to fight the fight we have fought most all our lives.
The Below Links Added 11.05.2013
All About Rotary International
From Rotary International website, please visit to learn more:
We are neighbors, community leaders, and global citizens uniting for the common good. With you, we can accomplish even more.
The heart of Rotary is our clubsódedicated people who share a passion for both community service and friendship.
Whether you're a student or starting your career, there are many ways Rotary can help you become a better leader.
Rotary brings together great minds from nearly everywhere in the world.
From college scholarships to our renowned Peace Fellowships, Rotary supports the educational aspirations of thousands of future leaders.
Explore the world through our global network.
We're committed to taking on some of the world's most pressing challenges.
Change your community with us by volunteering on a local project.
We work with groups of all sizes to accomplish even more.
END POLIO NOW
Please Donate if You Can!
Excert from email I received from Polio Globel Eradication Inititive:
"You may also wish to consider linking to Rotary International's PolioPlus website. Rotary as you know is the private sector arm of the polio eradication effort, and they have lots of interesting information about the global effort."
How you can help. This from their website:
Help get the word out about our efforts to fight polio.
Make it personal by posting about polio on Facebook or Twitter.
Keep informed by following our campaign to end polio on Facebook and Twitter.
Add your photo to show others that we are “This close” to a polio-free world.
Harness the power of the press by writing an opinion piece or a letter to the editor.
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 tryng to help eradicate polio from three countries left in the world where the virus continues.)
Update: As of November 10, 2013 Dr. Bruno continues to maintain the Post-Polio Institute
The Post-Polio Institute and
International Centre for Polio Education
I have been VERY fortunate to communicate directly with Dr. Richard L. Bruno. He has never failed to answer any of my emails. His 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 Sequelae (PPS)."
Without Dr. Bruno I don't know what I would have done those first months of the rapid decline in health. I have seen doctor after doctor and none have appeared to have knowledge of the residuals of polio and seem at a loss of words when I talk to them about my symptoms. One neurologist kept saying to me over and over again, "You DON'T have polio and there is no treatment for you!" I told him I understood I do not HAVE polio but needed his advice regarding the "residuals of the polio" and any recommendations he might have. We actually began yelling at each other until I finally said, "I don't think you are the doctor for me." and he responded, "I don't think so either. Keep seeing your Psychiatrist!"
Thanks to Dr. Bruno's advice I have made changes to my home, how I work and live. I thought I fought a battle growing up with the residuals of polio but now.....I'm fighting to keep and maintain the strength I have left. I finally got the nerve up to tell my supervisor last year, "There was a time I put my job and the institution first, but now......it is time I put James first."
My new battle continues but having Dr. Bruno has given 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 and I promise as time goes by I will share my own experience with you in the hope it will help you maintain your own independence.
Sincerely and Respectfully,
PS: Once again, 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 or paperback books. 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.
PolioToday.org is constantly updated and appears to have many members....including me!
I HIGHLY RECOMMEND the site 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 more sites like Polio Today please let me know so I can share the link with other Survivors.
See more links on by clicking to the left of this page "Polio Links"
In the United States, polio was the most notorious disease of the 20th century until AIDS appeared. On April 12, 1955, it was announced that Jonas Salk, using March of Dimes donations from millions of people, had developed a vaccine to prevent polio.
THANKS FOR STOPPING BY!
Added Oct. 26, 2013
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Sorry, I just discovered an error in my email address and it has been corrected.