The Lighthouse

                                Coastal Empire Polio Survivors Association, Inc.

                                                                   Newsletter, February, 2007

Shining light on post-polio health

http://www.coastalempirepoliosurvivors.org

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The President’s Message:  I would like to share my 3-R’s for Polio Survivors to Live Proactively: Research, Read, Rest and Alleviate Stress

Research:   Many drugs may cause drowsiness or increase fatigue as a side effect within the general population. These include central nervous system (brain) depressants, for example: narcotics, sedatives, tranquilizers, sleeping pills, alcohol, anti-histamines, antidepressants and anti-anxiety agents. (Always check the label or ask your physician or pharmacist.) If the general population could have these side effects from these types of drugs, what would be the effect on a polio survivor who is already suffering from chronic fatigue and muscle weakness?

 Polio:             

• Polio survivors must be knowledgeable about what happened to them forty to fifty years ago when they contracted polio in order to understand the late effects of polio today.
• Learn about the three different strains of the polio virus and the effects each had. Make sure you inform your doctor of the strain of the polio virus you contracted.
• Learn about the polio vaccine and what measures are being taken to eradicate polio in the world.
• Learn the risks of preschool age children not receiving the full dose of the polio vaccine in the United States and inform your children and grandchildren.

 Medications:

• If you have a history of polio, you must take special care and be actively involved with your physicians when it concerns taking medications, even if you have not been diagnosed with Post-Polio Syndrome.
• Notify your pharmacist to notate in your records that you have a history of polio, even if you have not been diagnosed with PPS.
• Before you start any new medication, always talk with your pharmacist about the side effects, and remind him to consider your history of polio.
• Polio survivors and their physicians should scrutinize all medications - current or newly added - to be assured that related conditions such as fibromyalgia, elevated cholesterol, high blood pressure, etc. are appropriately treated, but with minimal effect on polio-related symptoms. PPS information suggests that some medications used for heart or blood pressure problems and cholesterol-lowering may increase polio-related weakness and fatigue, especially the cholesterol-lowering medications of the “statin” family.

 Surgery and Anesthesia:

• Get a 2nd opinion before you have orthopedic surgery, preferably at a Post-Polio Clinic.
• Review the information in your CEPSA health data packet (that you received in 2006) about surgery and anesthesia and make sure you fill out the forms for emergency and surgery health care and give copies to family members. If you did not receive your health packet contact me, Diane Davis at (912) 355-1221.

 Sleep:

• Sleep problems are a common PPS Symptom.  PPS information suggests that using sleeping pills may cause an increase in polio- related symptoms. Ask your doctor about other options available to you.
• PPS information suggests that if you wake up with a headache in the morning, you may not be getting enough oxygen at night, and you should bring this to your doctor’s attention.

 Read:

Everything you can get your hands on about Post-Polio Syndrome, even if you have not been diagnosed with PPS. Consider the following:

• A medical examination is always important to rule out other health conditions that may not be related to polio.
• Have a complete work-up done at a Post-Polio Clinic.

 Rest and Alleviate Stress:

     Rest? But that’s not being normal! Fighting to be as normal as possible seems to be universal among polio survivors. You may think that this only applies to survivors with little or no visual effects of polio because they can disguise it. However, all my life I fought to be accepted as normal, too, even though I have walked with crutches and full length leg braces since I was two years old. I didn’t see myself as disabled and I strived for others to see me the same way, through my smile. Then out of nowhere came Post-Polio Syndrome and the extreme exhaustion that comes with it; not to mention the excruciating pain in my shoulders and arms from walking with crutches all my life. Being part of CEPSA, I learned that it’s true what they say… The Key to controlling Post-Polio Syndrome symptoms is “Conserve to Preserve.”  When I say rest… I don’t mean to stay in bed all day, after all that is not a polio survivor’s nature. I mean “Rest to Alleviate Stress.” It works! I am living proof. I have rest periods using my scooter off and on all day at home. I am still active and getting things done, just in a way that alleviates the stress that is causing pain. After a period of time, the shoulder and arm pain is very little to none and the fatigue has improved considerably… as long as I conserve to preserve. Also, it took awhile for me to make the major adjustment of being seen in public using a scooter; however, when I did, I discovered that I could to do things that I used to do using my crutches, like shopping at the mall, that I had been avoiding since PPS. The same is true with knee pain and new leg weakness. At the first sign of pain or weakness, check into getting a brace to support your legs from carrying all the weight. Thus, alleviating the stress that is causing the pain. This applies to survivors who don’t use crutches or leg braces but have new weakness and pain in the back, neck, arms and hands as well. Get some kind of new equipment and accessible devices that can give you the help you need to –“Rest to Alleviate Stress and Live Proactive Productive Lives!”

God Bless…                                  

Diane Davis, President

Member Concerns

Velma Underwood

Anne Chance’s mother

Idella Stevers White’s husband

Our deepest condolences to the family of Betty Kipp. One of CEPSA’s own.

Deepest condolences are also sent to Harriett Merritt and family.

Congratulations on your retirement, Hattie Evenson!

Minutes of the CEPSA Meeting for January 27, 2007

Diane Davis, president, called the meeting to order. Bob Parkhurst gave an inspiration on “Being Happy.” He reminded us to plan on living forever, but to live as if this is our last day on earth; to smile and make good use of a positive sense of humor.

The program focused on several discussion groups for S.O.S. – Sharing Our Strengths.

Three topics were assigned:

“What does being a member of CEPSA mean to you?”

“What can you do to help CEPSA make a difference in the lives of polio survivors and their families and in the community?”

“Goal setting for 2007”

After a lively discussion time, each group reported their ideas to the whole group. A summary of these reports is given below:

• Develop more awareness about our website and continue to expand it through relevant links.
• Schedule more professional speakers.
• Consider placing large ads in the newspaper. Let Savannah know we’re here.
• Work at the state and local level to have September declared “Immunization Month.”
• Start a lunch bunch to extend our time together after meetings.
• Update member directories and distribute to all members to aid communication and support.
• Continue to educate family members and medical professionals about post-polio problems.
• Encourage better member participation in meetings and activities.
• Promote live polio presentations at civic and religious meetings, i.e. senior church groups, Rotary.
• Collaborate with other groups on projects. Supply speakers to other support groups.
• Share our talents and abilities with the community in a fun format.
• Improve radio, television, and newspaper publicity. Make better use of our pamphlets.
• Consider being part of the St. Patrick’s Day Parade.  
• Consider sponsoring our own regional polio conference for a weekend in April 2008.
• Plan more social outings just for fun and fellowship, such as a tour or riverboat cruise.
• Develop programs on pain management and depression.
• Offer book discussions at Barnes & Noble on polio related themes.

The topic “What being a member of CEPSA means to you” was postponed until our next meeting because of time constraints.

After a refreshing break, we continued with our business meeting segment. Marty Foxx gave the treasurer’s report. Notes of thanks were read from the Newcomers and the Calandras for gifts of concern. Lorraine Frew is improving with her “new” knee and sends her thanks as well. Jim Walker has moved to West Virginia and is doing well there. We were saddened to learn of the death of Betty Kipp at age 91 after a battle with cancer. Congratulations were given to Hattie Evenson on her retirement. Diane Davis will speak on polio at an Armstrong Atlantic State University physical therapy class in February. Sandra Bath, as a representative of CEPSA, will host the August meeting of the Coastal Immunization Coalition at Wild Heron Villas and invited us all to come make ourselves known to them. A number of nice door prizes were distributed before we adjourned.

Respectfully submitted,

Marty Foxx, acting secretary for Janet DiClaudio                                                                 

 The greatest healing therapy is friendship and love.    Hubert Hubert

Attendees at the 1/27/07 Meeting:

Beverly & Gene Jarvis    Nancy & Steve Hess            Tom & Eunice Newcomer

Jim & Gigi Veccia            Ruth & Junie Parham            Adrienne & Ed Stallworth                                         

Sher Blackwelder            Sissy Morel                            Diane Davis                                        

Cheryl Brackin                 Betty Goff                              Lavonne Calandra                              

 Marty Foxx                      Sandra Bath                           B J & Dave Vance     

Dot & Bob Parkhurst     Dianne & Tony Falgiani      Richard Graham

 Speaker at the February Meeting:  Dana Remick

Dana J. Remick, CPO, received his degree from Armstrong State University in 1989.  His formal education in orthotics and prosthetics was from Northwestern University in Chicago.  Subsequently, he passed his board exams and became certified by The American Board for Certification in Orthotics and Prosthetics.  In July of 2007, Dana will have completed his 30th year in the field of Orthotics and Prosthetics.  He has been employed by Hanger Prosthetics & Orthotics for virtually his entire career except for a five month period in which he was employed by Shriners’ Hospital for Crippled Children in Philadelphia, PA.  Currently, he is the manager of Hanger Prosthetics and Orthotics in Statesboro, GA.

Voluntary Dues of $15.00 may be paid at any time throughout the year to Marty Foxx; her mailing address is: 

21 East 61st Street, Savannah, GA 31405

The gift of stamps for mailing your newsletter would be greatly appreciated!

CEPSA Officers for 2006

Diane Davis, President                        

Lorraine Frew, V.P.                                                                                                             

Janet DiClaudio Secretary                                                                     

Marty Foxx, Treasurer

Members-at-Large –

       Dan Shehan

       Jim Veccia

Committees - Chairpersons:

Publicity - Cheryl Brackin

Newsletter - Sandra Bath

Mailing – Beverly Jarvis                                 

Fund-Raising –

   Richard Graham

Hospitality –

  Tom & Eunice Newcomer            

   Dot and Bob Parkhurst

Phone - Lavonne Calandra

            Betty Goff

Videographer - Junie Parham

 Statement of Policy

To be placed on the newsletter mailing list, a person shall fulfill at least one of the following criteria:

Pay annual dues of $15.00.

 Attend at least one meeting in a twelve-month period.                                                                                                  Call the CEPSA president and request to be placed on the list.

Articles contained in this newsletter do not imply any endorsement of the information or sources of that information.    They are included as a means of education and do not reflect any official policy of CEPSA.