THIS IS A NOT FOR PROFIT WEBSITE! THE SOLE PURPOSE OF THIS SITE IS TO
SUPPORT WORLDWIDE POLIO SURVIVORS AND ANYONE INTERESTED IN
"POLIO SURVIVORS IN THE 21ST CENTURY"
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
This page modified 09/28/2014 - 11:30 AM EST
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Contact Email Address
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This is the best YouTube I have found regarding Post-Polio Syndrome.
If you have found a better video please let me know.
New - September 25, 2014
From WHO - World Health Organization.....
Polio cases have decreased by over 99% since 1988, from an estimated 350,000 cases in more than 125 endemic countries then, to 406 reported cases in 2013. These included only 160 cases in endemic countries; international spread from endemic areas into polio-free areas accounted for the remainder. In 2014, only parts of 3 countries in the world remain endemic for the disease–the smallest geographic area in history.
Of the 3 strains of wild polio virus (type 1, type 2, and type 3), wild polio virus type 2 was eradicated in 1999 and case numbers of wild polio virus type 3 are down to the lowest-ever levels with the last case reported in November 2012 from Nigeria.
Excerpt from: WHO Media Center - Polio
- A MESSAGE FROM THE OWNER AND CREATOR OF THIS WEBSITE -
What is POST-POLIO SYNDROME, better known as PPS?
This information comes from the website of NINDS. There are many polio-survivors who have now developed PPS aggravated by the aging process. The owner of this website has and is experiencing the effects of both. In order for your doctors to understand what you are going through, YOU must first understand what it is and why it is happening. Once again I can't stress enough how important it is for you to read Dr. Richard Bruno's "The Polio Paradox".
Post-polio syndrome (PPS) is a condition that affects polio survivors years after recovery from an initial acute attack of the poliomyelitis virus. Most often, polio survivors start to experience gradual new weakening in muscles that were previously affected by the polio infection. The most common symptoms include slowly progressive muscle weakness, fatigue (both generalized and muscular), and a gradual decrease in the size of muscles (muscle atrophy). Pain from joint degeneration and increasing skeletal deformities such as scoliosis (curvature of the spine) is common and may precede the weakness and muscle atrophy. Some individuals experience only minor symptoms while others develop visible muscle weakness and atrophy.
Post-polio syndrome is rarely life-threatening, but the symptoms can significantly interfere with an individual's ability to function independently. Respiratory muscle weakness, for instance, can result in trouble with proper breathing, affecting daytime functions and sleep. Weakness in swallowing muscles can result in aspiration of food and liquids into the lungs and lead to pneumonia.
The cause of PPS is unknown but experts have offered several theories to explain the phenomenon — ranging from the fatigue of overworked nerve cells to possible brain damage from a viral infection to a combination of mechanisms. The new weakness of PPS appears to be related to the degeneration of individual nerve terminals in the motor units. A motor unit is formed by a nerve cell (or motor neuron) in the spinal cord or brain stem and the muscle fibers it activates. The polio virus attacks specific neurons in the brain stem and spinal cord. In an effort to compensate for the loss of these motor neurons, surviving cells sprout new nerve-end terminals and connect with other muscle fibers. These new connections may result in recovery of movement and gradual gain in power in the affected limbs.
Years of high use of these recovered but overly extended motor units adds stress to the motor neurons, which over time lose the ability to maintain the increased work demands. This results in the slow deterioration of the neurons, which leads to loss of muscle strength. Restoration of nerve function may occur in some fibers a second time, but eventually nerve terminals malfunction and permanent weakness occurs. This hypothesis explains why PPS occurs after a delay and has a slow and progressive course.
Through years of studies, scientists at the National Institute of Neurological Disorders and Stroke (NINDS) and at other institutions have shown that the weakness of PPS progresses very slowly. It is marked by periods of relative stability, interspersed with periods of decline.
The above excerpts are from: National Institute of Neurological Disorders & Stroke
Update: As of September 25, 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.
Update: As of September 25, 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. The SSDI process was stressful but thanks to Dr. Bruno collaborating in writing and helping pass the SSD ruling for Post-Polio Survivors with Post-Polio Sequelae (Syndrome) the approval came quickly for SSDI.
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. FaceBook also has a number of support groups and I will list some on my "Polio Links" page on this website. Just keep in mind, you HAVE to educate yourself if you expect to educate your doctors!
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 just discovered an error in my email address and it has been corrected.