The President’s Message…
In To Kill a Mockingbird, Atticus explains to Scout that “You never really understand a person until you consider things from his point of view…until you climb into his skin and walk around in it.”
At CEPSA’s April meeting, we all got to understand each other and ourselves better as we “walked” through the lives of some of our newest members.
I came home from April’s meeting feeling proud to be part of such a group of people as the CEPSA members. At the meeting I heard stories that inspired tears and laughter, sadness and joy, pride and humility. I heard stories that were different from my own but which were, in many ways, similar to mine. To the folks who shared the stories of their lives with us, thank you. No greater gift exists than this one of sharing your life with others.
Now April’s showers have brought us to May. The month may have been named for the Greek goddess Maia, who was identified with the Roman era goddess of fertility, Bona Dea (the goddess of goodness), whose festival was held in May. Festivals held in this month were often in honor of the springtime’s fertility and in the hope for a good growing season.
CEPSA is planning a field trip. On May 31st we will take a guided tour of historic Savannah. Our guide will be Dorinda Duggan, a licensed guide who has thirteen years of experience. Our tour will begin in the Bull Street Baptist Church parking lot. I hope to depart on the tour by 10:00 a.m., so please arrive in plenty of time to get settled on the coach.
The coach has a lift on it, so anyone who has trouble with steps can sit in a chair on the lift and get a ride up to the seat-level. Scooters can be left in safety inside the church.
The tour will last about 60 minutes, after which we will return to the church for lunch catered by Adrienne Stallworth and several young people from the church.
I know we will enjoy this time together; we will not only learn more about this beautiful city but also spend quality time eating, mingling, and sharing with one another. So, if you are not already signed up for this event, call your care team leader today!
Note: Our field trip is on May 31st, we will not be meeting on our usual fourth Saturday. If you are planning to attend our field trip and have NOT been contacted by your Care Team Leader call Adrienne Stallworth @ 912-748-8436 today. Advanced reservations are needed. Bus tour is $10.00; lunch is $5.00 per person.
CEPSA’s Minutes – April 26th Meeting
Sandra Bath called the meeting to order. She welcomed all members and visitors to our 12th anniversary meeting.
Sandra led us in the Pledge of Allegiance. Chris Wilburn gave the Inspiration and shared his Polio Story. He shared his struggles and triumphs going through polio and every day life.
Sandra introduced the speakers for today: Terri Dunnermann, Angelo Foster, Danny Jenkins and Charlotte Richter.
Lorraine Frew and Cheryl Brackin gave a brief history of CEPSA.
The speakers shared their stories. Many of the members could identify with the difficulties and successes in their lives. It was good to meet the speakers and get to know them better.
There was an Anniversary Party at this time with refreshments and a cake with our lighthouse decorated on the cake.
Sandra called us back into the business meeting. Cheryl Brackin moved to accept the March meeting minutes as printed in the newsletter. Jim Veccia Seconded the motion. Approved.
Adrienne Stallworth presented the Treasurer’s report for Marty Foxx. It was approved as presented.
The Budget was presented for informational purposes only. Sandra challenged the members to meet the proposed budget and that there would need to be fund raisers to meet the budget.
Care Team Reports: Lavonne Calandra has fallen and injured her back. Velma Underwood is having some difficulty recovering from her surgery. Cheryl Brackin mentioned that one of our members was experiencing some pain following surgery and shared the Post Polio Syndrome Book with her doctor. He changed her medication, and she is much better. We must take responsibility for ourselves in educating our caregivers, many of whom are ignorant about Polio survivors.
At this time we had a moment of silence to remember our members who have passed since the last anniversary meeting; we remember Judge Cheatham, Muriel Pittman, Doris Phillips, David Smith and Jim Walker. Janet DiClaudio read a letter from Marguerite Walker thanking us for our notes and newsletters that we sent to Jim.
Committee Reports: Sandra mentioned that the 5th grade poster contest held in 2006 was a success and the posters have been framed. One is at the Chatham County Health Department, and the others are going to be taken to the other Health Departments.
The Adolescent Immunization program will be held this year with the school nurses in charge. Our name will be on the literature and posters as sponsors of the program.
Sandra then mentioned that the May 31 meeting will be a historic trolley tour and luncheon. We will meet at Bull Street Baptist Church. There will be a trolley equipped with spaces for 2 wheelchairs, and the luncheon will be held afterwards at the Bull Street Baptist Church. Please sign the sheet for the tour if you are planning to attend. You may pay your money today to Adrienne for the tour and luncheon.
We hope to see you then.
Meeting closed at 12:30 PM
Respectfully submitted,
Adrienne Stallworth , Secretary
Polio Survivors Ask…
Nancy Baldwin Carter, Omaha, Nebraska
Q: Is our condition—post-polio syndrome—included in new medical texts or taught to medical students?
A: Apparently, the answer is “yes.” PHI has been asked for photos of polio survivors with PPS for such reasons.
At first this idea sounded to me a bit like providing photos for a criminal justice class to show them what a criminal looks like. Just how does someone with PPS look, anyway?
An individual with PPS is not simply someone with recurvatum or an atrophied hand. It’s a million other things, as well. What does underventilation look like? How do doctors view a likeness of someone with severely weakened throat muscles and understand that she cannot swallow solid food?
Furthermore, is there any way those same doctors could know that the deformities they see were caused by PPS and not by the original bout with polio?
Could our photos make a difference?
The task seemed impossible. We would have to develop our own huge “rogue’s gallery” if we hoped to present an even halfway useful visual means of familiarizing doctors with the various “looks” of PPS.
And yet, what a contribution this could be! How about at conferences, where medical professionals could use our photos in teaching other medical professionals about PPS and a variety of devices that provide solutions for polio survivors?
Or perhaps use the PHI website to display a certain number of relevant “before and afters” so that medical professionals could view them easily in their own offices? Or to encourage polio survivors in other countries, for instance, who aren’t familiar with what’s available in the way of braces and various other assistive devices they have never seen?
I began to warm to the idea. I talked with Joan L. Headley, PHI’s Executive Director, to discuss the issue. She loved it and suggested we devise a way to give it a try. This could be exciting! So here’s the deal: PHI asks those of you with PPS who wish to participate in this venture to provide us with pictures. 3
Not just any photos, mind you, but specifically a series of Before and After shots that will make your case clear through photos. Something like this:
- If polio left you with a drop foot, for example, see if you can find an old photo of how that foot looked before you had polio and how it looked after the disability became observable.
- If your problem was alleviated with a brace, see if you have a photo that shows the brace and how that solved the problem.
- If, then, you encountered more problems in that same area when PPS hit you, let photos show how PPS changed that leg and then how that was corrected.
- You may be one who saw no noticeable difference to, say, your arms when you had polio, but PPS changed that—then we’d need pictures of how your arms looked before PPS and how they look now. If the condition has been corrected, then a photo of that would be needed, as well. Each photo submitted must be clearly identified so we know what it represents.
Please submit these photos (with a minimum resolution of 300 pixels per inch) to PHI’s email address – info@post-polio.org – with “Before and After” in the memo line by August 1, 2008. You should know that photos cannot be returned to you, so it may be best to scan them. (Scan them at 600 dpi.) If you can’t scan them and no longer want the photos, please mail them to PHI, 4207 Lindell Blvd, #110, St. Louis, MO 63108. Also, there is no guarantee anyone’s photos will be used.
Want to pull out your old albums and new digitals and join in this exciting undertaking?
Let’s go for it!
Nancy Baldwin Carter, B.A, M.Ed.Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association. Source: Post-Polio Health International
“Conscience keeps more people awake than coffee.” Author Unknown
Polio Cases Globally as of May 7, 2008
| Total cases | Year-to-date 2008 | Year-to-date 2007 | Total in 2007 |
| Globally | 383 | 145 | 1310 |
| – in endemic countries: | 363 | 120 | 1204 |
| – in non-endemic countries: | 20 | 25 | 106 |
Look closely at the table above. What do you notice? The number of polio cases are more than double the number at this date last year.
Eleven countries have reported paralytic polio cases so far this year. India reported 216 cases and Nigeria reported 137 cases thus far in 2008.
Medical News Today
10,000 Health Workers Stop Polio In One of Most Dangerous Places on Earth
26 Mar 2008
Somalia is again polio-free, the Global Polio Eradication Initiative (GPEI) announced, calling it a ‘historic achievement’ in public health. Somalia has not reported a case since 25 March 2007, a major landmark in the intensified eradication effort launched last year to wipe out the disease in the remaining few strongholds.
Against a backdrop of widespread conflict, large population movements and a dearth of functioning government infrastructure, transmission of poliovirus in the country has been successfully stopped. This landmark victory is a result of the efforts of more than 10,000 Somali volunteers and health workers who repeatedly vaccinated more than 1.8 million children under the age of five by visiting every household in every settlement multiple times, across a country ranked one of the most dangerous places on earth.
One of the 10,000 Somali volunteers and health workers is Ali Mao Moallim, who – more than 30
years ago on 26 October 1977 – became the last person on earth to contract smallpox. Over the past few years, working with WHO, he has traveled extensively throughout Somalia to immunize children against polio and foster community engagement during immunization campaigns. “Somalia was the last country with smallpox. I wanted to help ensure that we would not be the last place with polio, too,” he stated.
Submitted by Sandra Bath
Condolences
Our condolences to Dianne and Tony Falgiani on the loss of her father and to the family of Jim Walker, a CEPSA member, who died in April.
Member Concerns
Lavonne Calandra, Velma Underwood Eileen Boyle, Danny Jenkins, Ruth Parham
Congratulations!!!
Sally Luck who won a bronze medal in her age group in water walking in the Senior Challenge at Sun City.
Happy Birthday!!!!!
Junie Parham – 6
Allen Igou – 17
Dale Merritt – 26
Richard Graham – 31
QUOTE of the MONTH
“Today I bent the truth to be kind and I have no regrets, for I am far surer of what is kind than I am of what is true.” Robert Brault, author
A MESSAGE FROM THE DIRECTOR
“WHATEVER HAPPENED TO WARM SPRINGS” (Greg Schmieg)
Polio certainly doesn’t get the attention it used to during the 1930’s, 40’s and 50’s. It has all but faded from the front page of newspapers and medical journals, and if you were to ask most school children about it, they wouldn’t know what you were talking about. But that doesn’t mean polio has gone away. Not only are there thousands of polio survivors and people living with the symptoms of post-polio, but there are still new cases diagnosed around the world every day. To the very contrary, polio may have been forgotten by many, but it is not gone. That is understandable. Times change, the world moves on, and one epidemic is replaced by another and then another. Even the polio exhibit at the Smithsonian Museum of American History was called “Whatever Happened to Polio”.
At the height of the polio epidemic, the drive to eradicate the disease was embodied by none other than the President of the United States, Franklin Delano Roosevelt. FDR and polio became almost interchangeable, you could not think of one without thinking of the other. The same was true for the little town in Georgia that FDR fell in love with and spent much of his time, Warm Springs. He purchased and created what was then called the “Georgia Warm Springs Foundation” as a place of healing…a place of healing for polio, because that was the illness that he and so many other “polios” struggled with, suffered through and endured. Without polio, most likely there never would have been a Georgia Warm Springs Foundation, which later became known as the Roosevelt Warm Springs Institute for Rehabilitation; and the history of rehabilitation would have been completely different. Warm Springs has always been a place of healing, and polio made it the birthplace of rehabilitation as we think of it today.
Although the numbers of polio patients served by the Institute has decreased considerably since the advent of the vaccines, to this day the Roosevelt Warm Springs Institute for Rehabilitation continues as a place of healing for all kinds of disabilities. The mission hasn’t changed even though the nature of the illness has.
But that doesn’t mean that Warm Springs has forgotten about polio. To the contrary, the Institute is still focused on serving those living with polio. The names and faces of the doctors and therapists may have changed, but the desire to continue to be the “living legacy” of FDR is still strong. Polio is part of the Institute’s DNA, and it will always be. This past year, the Institute acquired the Smithsonian polio exhibit which is proudly displayed in Roosevelt Hall, and plans are currently underway to be the “host” site for the 10th International Polio Symposium in April 2009. As the Institute continues to move forward in this new century, and serve individuals with spinal cord injuries, the blind and deaf, and returning wounded warriors, it does so with it an undying commitment to polio.. .that will never change.
Below is a comment from the publisher regarding this article
Most of you who read this newsletter over the years know that, since the death of Dr. Anne Gawne, others and I have worked with the leadership at Warm Springs and the Directors office in Atlanta to insure that Polio was never forgotten at the very location where it was the crowning achievement for the World. Doctors that were trained especially for treating polio no longer treated polio. The direction at Warm Springs changed or attempted to change to the treatment center for treating and rehabilitating sports injuries and rehabilitating people back into the job market. Polio was no longer set as a priority. Today is a new dawning at Warm Springs. For the first time in five years I can see a new birth at Warm Springs, the birth of a new Director, a new doctor who not only wants to treat polio survivors, but also has a strong desire to learn as much about polio as possible. I would recommend to anyone and everyone to come to Warm Springs for a check-up. The polio clinic is now open one day a week and is filling up very quickly, so make your reservation, appointment, as soon as possible. The staff at Warm Springs will make all effort to accommodate your every need. I do not want to make light of the other commitments at Warm Springs, because they are a much-needed necessity for the treatment of all people with disabilities. Yes I have changed my mind; Warm Springs will again become the shining star for the treatment of polio survivors.
Reprinted from FRD PPS Foundation Newsletter
CONTRIBUTIONS
The Coastal Empire Polio Survivors Association is a non-profit corporation which is tax exempt under IRS code 501c(3). We have no paid employees, only volunteers dedicated to helping all polio survivors.
Your financial support is appreciated at any level suggested below:
- CEPSA Member – $15.00 annual voluntary donation
- CEPSA Supporter – $25.00 $50.00 $100.00 $300.00
- CEPSA Memorial or Honor Gift – any amount
- CEPSA Sponsor – any amount
Your contributions are tax deductible and will be acknowledged appropriately.
Please complete this form and mail it along with your check to: CEPSA, Marty Foxx, 23 East 61st Street, Savannah, GA 31405.
Name ______________________________________
Address ____________________________________
City _______ State_____________ Zip _
Phone ___________ E-mail _____________________
Are you a relative or friend of a CEPSA member, if so Name of member _____________________
Thank you for your support and encouragement.
CEPSA’s next meeting is our field trip on Saturday, May 31st. The tour will depart at 10:00 am, so be on time. We will leave from the Bull Street Baptist Church, corner Bull and E. Anderson streets. Parking available in church parking lot.