The President’s Message…
May 2009
Dear CEPSA Members and Friends:
We had a wonderful 12th anniversary celebration on April 25th. Thirty-one members, spouses, and other family members attended. Great attendance considering that several of our members were at the Post-Polio Health International Conference at Warm Springs! Four survivors told some of their polio stories. We laughed, cried, and identified with them. Kudos to Janet DiClaudio, our hospitality chair, and her committee of Lavonne Calandra, Terri Dunnermann, Betty Goff, and Adrienne Stallworth. The food was delicious and plentiful. The presentation was lovely. Those women know how to give a party!
Mother’s Day was celebrated this month. My mom no longer is here for me to spend the day with her. On May 10 I reflected on my relationship with her. My mother was my polio hero. When I contracted polio at 25 months of age, she instinctively knew and diagnosed me before the medical professionals. At discharge from an Atlanta hospital six weeks later, a nurse told my mom I would be fortunate to walk in six years. My very determined mother told her that I would walk much sooner. There were no physical therapists in Jesup near our home, so Mom was my therapist. She pushed me relentlessly through my daily exercise program. One day eight months later she and my sister were outside. Mom looked up and saw me standing at the door of our back porch. “Run, Sheila, run,” she said to my sister, “she’s coming down the steps.” I had taken off my braces and walked again for the first time since my paralysis began. My beloved mother continued to see me through my polio journey. Mom and I, sometimes along with my dad and my sister, made many trips to Warm Springs, Georgia, for outpatient follow-up evaluations and treatment. When I obtained copies of my Warm Springs records, I called my mother and said “Do you have time for me to say ‘thank you’ 34 times?” Mom always encouraged me and expected me to succeed and achieve my dreams. Every day I say a prayer of thanks for my mother, my polio hero, the best friend I ever had.
Cheryl Brackin
Monthly Meeting Minutes
April 25, 2009
The meeting of the Coastal Empire Polio Survivors Association was called to order by
Cheryl Brackin, President, at 10:35am. She welcomed the members and guests to the 12th annual meeting of the group.
Lorraine Frew, Vice-President, led the Pledge of Allegiance. Terri Dunnermann, Member-at-Large, gave the inspiration “This Can Be the Best Year of Your Life,” and passed out inspirational cards to everyone.
Jim Veccia, Care Team Leader, shared that he has spoken to Dianne Falgiani of Bluffton, who lost her mother in late March. Dianne plans to return to our group in the future. Jerry Hewitt, spouse of Tammy Hewitt, was present and reported that she continues to have numerous health problems.
Four polio survivors and CEPSA members then were introduced and told some of their polio experiences.
Betty Goff contracted polio just before her 13th birthday. She told poignant and funny stories about her stay at Warm Springs. She received her first roses from a boy while there. Betty had seven surgeries on her leg. She was chosen National Peanut Queen at age 16 years. One quote she remembers and lives by is “For everything bad, there is something good.” She is a charter member of CEPSA, who actually left us for a while, and then returned after attending the Warm Springs reunion.
Lavonne Calandra contracted polio at three years of age. She went to Warm Springs for her first “proper” brace. She had surgery there at 11 years of age. Lavonne recounted stories of the famous “push boys” at Warm Springs. She met and married her beloved Tony here in Savannah. Although she had no apparent residuals from the polio, she did tell him about it before they married. Lavonne shared that she was “taught to be a Southern lady.” She began experiencing fatigue and was encouraged by Tony to attend our group. She is a charter member of CEPSA.
Delores McIntyre of Brunswick contracted the virus at 11 years of age. She was paralyzed from the neck down with spinal and bulbar polio. A Catholic nun at the hospital inspired her as she suffered “therapy that was like a torture chamber.” Delores had surgery on her ankles at 14 years and also on a finger on her left hand at age 16 years. Her driving motto was “If someone else can do it, I can and even better.” She began a small post-polio support group when she lived in North Carolina. Delores was accompanied by her daughter, son-in-law, and granddaughter to this meeting.
Penny Smith contracted polio at seven years of age. She was treated in Jacksonville, Florida, where she lived. Penny recalled the very hot “Kenny packs,” developed by the Australian nurse Sister Kenny, as part of her therapy regimen. A green iron lung with pink cushions was placed near Penny, but she did not have to go into it. She was encouraged and inspired in her recovery by her mother, who has been blind since birth. Penny said “I am a pusher. I don’t like to be down and will push through.” She was accompanied by her husband Ross.
Cheryl thanked the speakers. She also thanked the hospitality team who planned and purchased the food for the luncheon. They were Lavonne Calandra, Terri Dunnermann, Betty Goff, and Adrienne Stallworth. Hospitality Chair Janet DiClaudio also thanked the committee for an excellent job.
The meeting was adjourned at 12:10pm. Members and guests then enjoyed a delicious lunch and lengthy conversations.
Respectfully Submitted, Cheryl Brackin, Acting Secretary
Living With Post-Polio Syndrome
Decades after surviving polio, many individuals are faced with the pain, fatigue and muscle weakness of post-polio syndrome (PPS). PPS is believed to affect 20-40% of the 640,000 polio survivors in the United States, according to the Post-Polio Task Force . People who had more severe cases of polio generally have more severe cases of PPS, as well. There is no cure for PPS, but it is seldom a life-threatening condition.
PPS typically affects polio survivors 10 to 40 years after an initial polio attack. In the course of recovery from polio, the body compensates for the loss of nerve cells by sprouting extra nerve endings to restore function to muscles. It is believed that these “axonal sprouts” eventually fail after years of use, resulting in loss of muscle strength, pain and fatigue. In essence, the muscle fiber loses its ability to contract in an efficient manner. This may eventually lead to joint pain and skeletal deformities.
For example, patients may realize that in years past they could walk long distances, but are now fatigued by walking in the grocery store. Or they have pain or weakness in an area of the body they thought was unaffected by polio. However, not every polio survivor who has aches and pains or experiences fatigue has post-polio syndrome.
Diagnosis of post-polio syndrome is difficult because there is no test for PPS, and symptoms may be similar to other neuromuscular conditions such as fibromyalgia, or even depression. Laboratory tests, magnetic resonance imaging (MRI) or other studies may be performed at some point to exclude other causes of PPS-like symptoms. But a thorough medical history, physical and routine blood work may be the first steps in diagnosis.
Electromyography (EMG) is often performed to assess the status of nerve functioning; active nerve irritation, for example, may be a symptom of a more serious form of PPS. In addition, muscle strength may be measured over a period of time to demonstrate muscle atrophy. Another sign of PPS is that the individual has experienced at least 10 years of proper muscle functioning. There is no known way to prevent post-polio syndrome.
Christine A. Maxey, MD
Instructor of Physical Medicine & Rehabilitation
Medical College of Wisconsin, Reprinted with permission
NOTE
CEPSA’s May meeting will be on Saturday, May 30th instead of our usual fourth Saturday due to the Memorial Day weekend.
Happy Birthday …
May
Vivian O’Kelley – 14
Allen Igou – 17
Wayne Steadman – 17
Dale Merritt, – 26
Richard Graham – 31
June
Delores McIntyre – 10
Ed Stallworth – 12
Ruth Parham – 14
Janet DiClaudio – 17
Harvey Varnadoe – 22
Joey Carroll – 29
Member Concerns
Please remember in your prayers.
Betty Goff Cheryl Brackin
Tammy Hewitt Lorraine Frew
Nancy Hess Patrina Johnson
Please say a special prayer for Mr. Boone Knox of the Knox Foundation. He has been one of our biggest benefactors over the years having donated thousands of dollars to our organization. He is very ill.
Our condolences go out to Dianne and Tony Falgiani on the loss of her Mother. Our prayers are with you both.
Voluntary Dues of $15.00 may be paid to Marty Foxx; her mailing address is: 21 East 61st Street, Savannah, GA 31405.
Hattie, Eileen, Harvey and Charlotte at Warm Springs
The 10th International Post-Polio Conference took place this April in Warm Springs, Georgia. CEPSA was represented by Sandra Bath, Eileen Boyle, Ann Chance, Hattie Evenson, Marty Fox, Charlotte Richter, and Harvey and Skeet Varnadoe. Their experiences and impressions will be presented to the CEPSA members at the May meeting. The group gleaned a few new ideas, even a new type of leg brace so promising that one member has already been measured for one. In addition, Sandra attended the four-day wellness retreat and has brought home several ideas to share. Ann will discuss exercise and the ideas about it presented by several doctors. All in all, the May meeting will offer lots to discuss and, perhaps, incorporate into our lives. We hope to see you at the meeting.
QUOTE of the MONTH
“Feelings are much like waves, we can’t stop them from coming but we can choose which one to surf.” Jonatan Martensson, Essayist
CEPSA’s 12th Birthday Party
April 25, 2009
Go to Scrapbook on the website for more (and better) pictures of the party.
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 _________________________________
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Thank you for your support and encouragement.