The President’s Message…
June 2009
What a wonderful job our panel did at the May 30 meeting!! Sandra Bath, Ann Chance, Hattie Evenson, Marty Foxx, Charlotte Richter, and Harvey Varnadoe gave us highlights from their trip to the 10th Polio Health International Conference held in Warm Springs in late April.
I have a new personal theme in my role as president. It is “Seven Days for CEPSA.”
Many days I do CEPSA jobs which are rather routine but necessary. This includes sending e-mails to check with an officer or member about an issue. Speakers must be invited. Meeting agendas must be typed. There are things I want to do, such as calling to check on members, particularly those on our concerns list in the newsletter. Sending birthday cards is fun for me. It seems I always wish I had done more. There’s that polio personality coming through! My plan is to do something for CEPSA seven days in sequence each month—or something better if I have the time. My tasks will include: sharing a list of the remaining U.S. polio clinics and physicians available to us; organizing my polio files and passing photos of past events to Jim for the website; dropping notes to members who are sick; inviting members we have not seen in a while; interviewing members and writing their polio stories for the newsletter; learning the process for depositing our archives with the Georgia Historical Society; leaving CEPSA brochures or flyers at area hospital rehab. programs, local brace shops, and orthopedic physician offices; scheduling members to speak at a local Rotary Club, a local t.v. station, and local public radio; brainstorming with the executive council on fundraising ideas; networking with other organizations such as LIFE; writing letters to local businesses regarding accessibility concerns.
I want to challenge our members to join me. Decide what you can do for seven days, even if not in sequence. Although we are energy-deprived, this is a creative group. Sometimes a phone call can brighten someone’s day. A card of concern can be uplifting. You might think of a new fundraising idea. As we know, others will not take up our cause. Many do not even realize we are still here. It is up to us to carry our own banner.
Cheryl Brackin
Post Polio Health 10th International Conference
This article is by Harvey Varnadoe on his impressions of the conference.
It was very interesting to see the changes to Warm Springs since the days I was an inpatient there. This was my third visit since 1964 when I was there for a muscle transplant. A lot of additions have been made, and now polio rehabilitation is not their focus. The conference brought back the focus on post-polio syndrome. The conference was very busy with 8 to 10 sessions per day. There also were tours of the old facilities and the “Little White House.” There were sessions on the history of polio and treatment and the role Warm Springs played.
My reason for going was to see if there were any studies or research to slow down the effects of neuro-muscular degeneration that is the root of PPS. I was very disappointed since in 2008, there was 29.8 million dollars spent on research, but none was spent on this important study. The vast majority was spent on trying to connect PPS with other aging conditions. The majority of us are of an age when diseases such as arthritis, cardiovascular, high cholesterol and other diseases begin to show up. However, the treatment of these and other diseases oftentimes exacerbates PPS. It seems after the development of the polio vaccine, all efforts to help us with PPS have been forgotten. This leaves the burden upon each of us to deal with these late effects ourselves.
Some things at the conference do show promise in helping us lead more normal lives. One was showing many different ways that we can exercise to help prevent further loss of strength. Another was sleep studies. Many of us have problems sleeping, and these problems were dealt with in several sessions. There were workshops on C-pap/bi-pap that improve our sleep. Swallowing studies were also covered.
There have been new discoveries in bracing. Historically bracing to treat our extremities has been “passive.” They now are working on “pro-active” bracing that will allow us to walk and even run. These are being developed from the engineering being applied to amputee prostheses. This shows promise in allowing us to lead more normal lives.
In summing up, I was disappointed that there was no “silver bullet” being developed that would stop or slow down our deterioration and muscle problems. However, there are some things being done that will help us with our daily living. We must continue as we always have, learn to compensate and be very careful of the medications we take. Use what is helpful, discard what is not, and keep pushing the researchers, and let everyone know “We’re Still Here.”
CEPSA’s next regular meeting is on Saturday, June 27th, at 10:30 a.m. in the CandlerHospital
Heart & LungBuilding, second floor, conference room.
Some thoughts by Charlotte Richter on the Post Polio Health 10th international conference.
This was my first International Polio Conference ever. Encouraged by a friend I decided to attend, plus this was my first time to return to Warm Springs since 1950. The sessions and the speakers were very good, and new ideas, theories and demonstrations opened new thoughts.
Hats off to the ones that put together the museum at Georgia Hall! As I walked through the museum I saw the memories…I saw the posters showing the families that had been quarantined and the families that had been shunned. I remembered how my brother was treated by our neighbors. Then the next exhibit was an iron lung. It looked so big! I could see my mother’s hands opening the portholes and attending to my needs…tears came to my eyes and ran down my face.
The green lawn and the long sidewalk are still there along with the wooden exercise steps at the end of the walk. The buildings are brick now, not white.
The serene town in the hills of Pine Mountain is still the same…no McDonald’s nor a Wal-Mart.
The return trip to Warm Springs was a healing trip for me. At the age of 10 years I was accepted there for rehabilitation. My parents and I took the train from Illinois, and I began my journey. They returned home, and I soon found out what therapy was all about. My braces on my weakened arm, leg and back were finally removed, and I began to walk alone…a big surprise to all!
I was so homesick and had been placed in a ward with older ladies. One day I asked one of them why the dirt was so red. She said it was the blood of the Yankee soldiers…I was scared silly.
I understand now…I was just like everyone else. I was ashamed of my disability, being shunned by classmates, not being normal. But now at the age of retirement, I have the wisdom to seek out the education and support groups and to help others who need a helping hand and just need someone to talk with and listen to their stories.
By the way, I now live in Georgia and love the red clay and the Southern hospitality! Love my support group!
Charlotte Richter
Brunswick, Georgia
DID YOU KNOW………….
Americans with Disabilities Act:
Assistance at Self-Serve Gas Stations
People with disabilities may find it difficult or impossible to use the controls, hose, or nozzle of a self-serve gas pump. As a result, at stations that offer both self and full service, people with disabilities might have no choice but to purchase the more expensive gas from a full-serve pump. At locations with only self-serve pumps, they might be unable to purchase gas at all.
The Americans with Disabilities Act (ADA) requires self-serve gas stations to provide equal access to their customers with disabilities. If necessary to provide access, gas stations must –
a.. Provide refueling assistance upon the request of an individual with a disability. A service station or convenience store is not required to provide such service at any time that it is operating on a remote control basis with a single employee, but is encouraged to do so, if feasible.
b.. Let patrons know (e.g., through appropriate signs) that customers with disabilities can obtain refueling assistance by either honking or otherwise signaling an employee.
c.. Provide the refueling assistance without any charge beyond the self-serve price
Last year Sandra started a summer lunch program for CEPSA members to meet and catch up with each other during July and August. CEPSA will continue with this program and the dates for our luncheons will be on July 25th and August 22ND at noon. These dates are our usual fourth Saturday of the month. We will meet at Johnny Harris restaurant, 1651 E. Victory Drive, Savannah, GA. You can call (912) 354-7810 for directions. We will try to have the Care Team Leaders call to remind you. Of course, it will be “Dutch treat.”
Happy Birthday …
June
Delores McIntyre – 10
Ed Stallworth – 12
Ruth Parham – 14
Janet DiClaudio – 17
Harvey Varnadoe – 22
Joey Carroll – 29
July
Cornelia Rollins – 21
August
Gene Goff – 7
Angelo Foster – 8
Tony Calandra – 11
Idella White – 21
Ron Gay – 26
Jim Veccia – 27
Bob Parkhurst – 29
Dear CEPSA Members,
It is with great sadness that I report the death of George Frick on Saturday morning, June 6, at Hospice Savannah. Those of us who knew and loved this wonderful man will miss him greatly.
He was a veteran of the Air Force, a retired insurance businessman, a polio survivor, and CEPSA’s first treasurer. George will be buried in Chapin, S.C. this afternoon at 2:00. A memorial service is planned for Sunday, June 21st at the Islands Assembly of God Church, 460 Highway 80 East, on Wilmington Island. The time of the service is 3:00 pm. Please remember George, Judy, and the Frick family in your thoughts and prayers. Our dear friend fought the good fight and now is at peace.
Sincerely, Cheryl
Please note that the minutes from our May meeting are not included in this newsletter. Our next newsletter will be in September and will include both the May and June minutes.
Hear yea, Hear yea …..
Richard Graham has been nominated to the board of Living Independence for Everyone (LIFE), Inc. He will be voted onto the board at the July LIFE board meeting. Congratulations, Richard!!
Preparing for your Doctors appointment at a post-polio clinic.
You’re likely to start by first seeing your family doctor or a general practitioner when you first notice your symptoms. However, you’ll probably be referred to a doctor who specializes in nervous system disorders (neurologist).
Because appointments can be brief, and because there’s often a lot of ground to cover, it’s a good idea to be well prepared for your appointment. Here’s some information to help you get ready for your appointment, and what to expect from your doctor
What you can do
- Write down any symptoms you’re experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Write down key personal information, including any major stresses or recent life changes.
- Make a list of all medications, vitamins and supplements that you’re taking.
- Write down questions to ask your doctor.
Your time with your doctor is limited, so preparing a list of questions ahead of time will help you make the most of your time together. List your questions from most important to least important in case time runs out. For post-polio syndrome, some basic questions to ask your doctor include:
- What is likely causing my symptoms?
- Are there other possible causes for my symptoms?
- What kinds of tests, if any, do I need? What will these tests tell you? What’s involved in the test?
- Is my condition likely temporary or chronic?
- What treatments are available? Which do you recommend?
- Are there alternatives to the primary approach that you’re suggesting?
- I have these other health conditions. How can I best manage them together?
- Are there any activity restrictions that I need to follow?
- Will I become incapacitated?
- Are there any brochures or other printed material that I can take home with me? What Web sites do you recommend visiting?
In addition to the questions that you’ve prepared to ask your doctor, don’t hesitate to ask questions during your appointment at any time that you don’t understand something.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:
- How severe was your polio infection?
- What areas of your body were affected by polio?
- What types of symptoms are you now experiencing?
- When did you first begin experiencing these symptoms?
- Have your symptoms been continuous, or occasional?
- What, if anything, seems to improve your symptoms?
- Does anything appear to worsen your symptoms?
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, GA31405.
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.