The Lighthouse The Lighthouse
Coastal Empire Polio Survivors Association, Inc.
Newsletter June, 2010
Vol. XIII, No. 6
Shining light on post-polio health
www.coastalempirepoliosurvivors.org
The President’s Message…
For those of you that missed our dinner fund raiser at River’s Edge, you missed a fun time. Janet did a fabulous job of organizing, coordinating and emceeing a great evening. We ate dinner and then Janet had a load of door prizes, I gave a very short talk, and the highlight of the evening was Dan demonstrating to us all how the IRON LUNG saved the lives of so many of us when we contracted polio. He climbed in and showed us how it worked. Through Janet’s efforts CEPSA raised nearly $700.00!!! Thank you, Janet.
While I was not at our May meeting, Diane’s program was SOS – Sharing Our Strengths. She found that the main PPS complaints were suffering from fatigue and breathing problems. With this in mind, Diane found the article below on fatigue and we are hoping to have a pulmonologist speak at our June meeting concerning breathing problems. - Jim Veccia
Fatigue was one of the main Post-Polio symptoms that frequently came up during our S.O.S. – Sharing Our Strengths discussion at the May meeting. While working on a history book from CEPSA’s early years, I found an article that addresses the cause of PPS fatigue, pain, and weakness and what we can do to reduce these symptoms. Take time to study the article… you are worth it!!
God Bless,
Diane Davis, Vice-President
Why Should We Learn to Conserve Energy?
In a study by Peach and Olejnik,[1] recommendations for change included “decreasing overall daily activities, a change in job, work environment modifications, a decrease in work hours, a decrease in social and recreational activities or taking rest breaks. New or additional orthotics were also recommended to effect safer, less painful and more functional gait patterns. In some patients, a component of disuse weakness was noted. In these cases, appropriate aerobic exercises were recommended, carefully avoiding over-exercising paretic extremities. A number of these patients had become overweight so a weight loss program was recommended.”[1] Those who made recommended changes showed either improvement or resolution of symptoms of weakness, fatigue and muscle and joint pain. Those who didn’t make changes found symptoms were either unchanged or increased.
Those with post-polio syndrome who were able to make changes and successfully control the factors responsible for overuse did not lose muscle strength. Polio survivors who didn’t make changes knew what they needed to do. Many simply refused to make changes in the behaviors that lead to overuse.
Agre and Rodriquez [2] noted that the amount of isometric “work” performed during interval exercise was significantly greater (237% on average) than during constant exercise. (Interval exercise was simply the constant exercise divided into quartiles by 2 minute rest breaks or into 20 second intervals with 2 minute rest breaks.) They also found that those with symptomatic post-polio were able to monitor local muscle fatigue and avoid exhaustion. Symptomatic post-polio subjects also recovered strength significantly less readily than a control group. If we allow ourselves to become overtired it takes us longer to get our strength back. By changing our activities to include rest breaks we may find we can do more with less effort.
Change is not always easy. In fact many polio survivors find change very frightening. Change requires examining the attitudes and beliefs that keep us from feeling well. We can change the quality of our lives by changing the way we look at our circumstances. Creative people are most successful at doing this over the long term. They see opportunity, where others see insurmountable problems. There is no reason we cannot see ourselves as creative and start making our lives better. Creative people are simply those who see themselves as creative. [3]
The way we see ourselves may interfere with our ability to change. One approach to the whole issue of activity is to be kind, positive and gentle with ourselves. The person behind the pain and fatigue, the real you, is a capable, worthy, individual and a beautiful human being. It’s time to start treating ourselves like the wonderful beings we are. It’s time to start taking care of ourselves as if we were precious possessions.Only you can decide to be sore and tired or relaxed and comfortable. You must decide if you want your weakness and fatigue to progress. You are responsible for what you do. You have no control over anyone other than yourself, and only when you are clear about who is responsible for your activity will you have the power to master it. You have the capacity to recognize fatigue and overuse. [2] You must decide how much you will or will not do.
Your mate, your friends, your boss, your doctor, your physiotherapist and your occupational therapist can only advise you. When you go on Dr. X’s Program, you may lose the power to choose when, what and how much you’re going to do. It may carry with it the terrifying feeling that you are back in the polio ward again and someone else is in charge of what you do. It also gives you someone else to blame for your weakness and fatigue: Dr. X’s Program didn’t work. You have given your power away to Dr. X. Dr. X may have some useful suggestions, but only you can decide what works for you.
The main principles of conserving energy include (1) doing what you most want to do, (2) planning activities for times when you have most energy, (3) learning what your maximum work is and respecting the signs of fatigue you experience and (4) stopping before you become exhausted. Before you begin any activity you should think about whether you really want to do it at all. Don’t ask yourself what you should do; ask yourself what you want to do. It is important to be flexible. Let others in the house or office help you with the jobs you find tough. Delegate tasks whenever possible.
Plan your activities for when you have the most energy. Most people don’t think about doing things if they are tired. Don’t waste energy by trying to do more than your body can comfortably do. If you are tired by noon, plan activities for the morning. We take a long time to recover if we allow ourselves to become exhausted.
Learn what you can do without pushing yourself and respect the signs of fatigue (including muscle soreness, tiredness, muscle weakness, change in quality of movement, grimacing, etc.). Work simplification is an important tool to use in reaching our daily and long term goals in life. Work at a comfortable easy pace and avoid tension. A moderate work pace uses the least amount of energy and you will make fewer mistakes. Alternate heavy with light work each day and throughout the week. Break up heavy jobs over several days. Sit for as many jobs as possible. Allow time for interruptions and emergencies. If you find walking difficult, take along a wheelchair or get a scooter and save your energy for more important things. Pay attention to your body’s signals. Care enough about yourself to listen to the messages of pain and fatigue.Plan rest periods during the day and STOP before becoming exhausted. When taking a rest, relax completely with your feet up. Try resting 10-15 minutes between each hour or two of activity. It will probably take some trial and error to determine what is best for you. If you get tired in the middle of the day, have a one hour sleep early in the afternoon.
Don’t expect the impossible, because even with a good plan, there will be setbacks. There are things we can’t change and accepting these will help make our lives work better. Sometimes we have to be willing to do a job less thoroughly than usual so we will have the energy to spend on our family or friends Other times we may choose not to do the job at all!
Kohl [4] suggests three techniques that we could use to help ourselves make changes. These are push to avoid pain, blank pad and plain talk. The push to avoid pain system acknowledges the amount of energy that we must generate in order to reduce our activity level. It is a statement of action, not of failure or backing down. It means that we are dedicated to taking care of ourselves. Other people, obligations and commitments will be prioritized according to pain thresholds and those actions that reduce pain. To delegate is action; to use respiratory equipment is an action with enormous consequences; to retain authority in a seated position requires great assertiveness. Taking care of ourselves is not giving in but rather a restatement of control. The pain will not control us, we will control the pain.
The blank pad method of documenting accomplishments during the day reinforces a sense of purpose. Instead of making list after list of things to be done and then crossing off what has been completed, use a blank pad to record all you have done. It is a great training exercise for developing awareness of all the energy expenditure that does occur. It also saves us from devaluing ourselves for that which was not done. The goal is to avoid negative feedback at the end of the day and replace it with positive feedback.
Plain talk was developed in response to people asking how to keep themselves and others from feeling manipulated. If someone does not respect a simple “No” in response to a request, we may have to ask “Why do you want me to be in pain, more tired, overextended, not able to enjoy our time together, etc.?” We need to practice simply worded responses that will increase the other person’s awareness of the impact of their requests without creating defensiveness.
You have changed physically. Your old coping strategies don’t work anymore. You must decide if you want your weakness and fatigue to progress. You are responsible for what you do. When you are clear about who is responsible for your activity you have the power to master it. You can live better if you adapt to the changes in your body. Energy conservation can help you feel better and do more with less. Only you can make the decision to take control and take care of yourself.
References
Kohl SJ, Emotional Responses to the late effects of Poliomyelitis, In Halstead LS, Weichers DO, eds., Research and Clinical Aspects of the Late Effects of Poliomyelitis, White Plains, NY: March of Dimes Birth Defects Foundation; 1987:135-143
CEPSA has already initiated the wheels turning for our major fund raiser, “Heel to Toe for Polio” walkathon. We are starting much earlier this year in order to try and double the amount of money we raised last October. I have already attended four meetings with the five Rotary clubs that we are partnering with. One of our objectives is to get sponsors from the business community of Savannah. If you have dealings with any businesses, doctors or therapy groups that you feel will support us please approach them for a donation. Once again this year you will receive a printed form from your Care Team Leader encouraging you to reach out to family and friends for support in sponsoring you in this walkathon. Everyone makes donations throughout the year. Try to have them include ours on their list. Remember, their donation is tax deductible. Not only are these donations going to help us, but they are helping eradicate polio from this planet!! Thank you, Jim
CEPSA Minutes for May 22, 2010
The meeting was called to order by Vice-president Diane Davis in the absence of the president, Jim Veccia. Delores McIntyre introduced her guest from Brunswick, John Blanton. Lorraine Frew led us in the Pledge to the American Flag. The inspiration was given by Adrienne Stallworth who shared a story from an African mission trip to a hospital. A newborn baby’s need for a hot water bottle was met by a gift box prepared months before by children in an American church activity. Her point was clear: God uses us to minister to those in need even when we are not aware of it.
In the business meeting, the minutes were approved as printed in the April newsletter. Marty Foxx gave the treasurer’s report which was also approved. As we listened to the Care Team reports, we learned about various health issues: heart problems, broken leg complications, pinched nerve pain, bronchitis, daily struggles with “simple” daily activities, and depression. Other members were out of town with family events, entertaining houseguests, and attending 50th high school reunions.Ruth Parham showed us a business-sized card which contained health information related to a polio survivor. She suggested that we consider having some printed for us all to carry in our wallets in case of emergencies. Diane will research the source and report back to us soon.
Cheryl Brackin explained a publicity issue with the Savannah Morning Newspaper; the address of 5356 Reynolds Street is required for our announcement about our meetings in the Candler Heart and Lung Building. The deadline is two weeks before the event. Other public announcement outlets were discussed. Tom Schendorf suggested that we place brochures in pharmacies, in doctors’ waiting rooms, and in rehabilitation offices. This is an on-going effort which needs attention by us all.
Under old business, Harvey Varnadoe suggested we put the t-shirt order on hold until a later time due to lack of interest. The polo style t-shirt with our CEPSA logo on it cost $25.00. This project is not a fundraiser; its purpose is public awareness for our group.
Diane thanked all those involved in the River’s Edge Fundraising Dinner held on May 11. The event was a wonderful success with 50 guests enjoying a delicious meal as well as a very informative program on the Iron Lung by Dan Shehan. Janet DiClaudio and the River’s Edge staff did a fantastic job planning and organizing the evening’s activities. Richard Graham arranged for transportation of the iron lung to and from storage. Thanks go out to Tom and Eunice Newcomer for keeping the iron lung at their residence over the past several years; it is now stored with our other equipment at the Quick Lock Storage unit in Garden City. The dinner brought $660.00 into our treasury! We are grateful to those who donated our fabulous door prizes
LoCost Pharmacy on Paulson Street
Crystal Beer Parlor: Phil Nichols
River’s Edge bus driver Lanelle Reynolds River’s Edge Retirement
Sher Blackwelder of “Wake Up…Feel Good”
Elizabeth Colson Glenda Wilson of Dove Chocolate Discoveries
JANET DICLAUDIO!!!!!
After a brief recess, we began the program, “Sharing Our Strengths.” Each person shared personal post-polio related issues with the group offering helpful advice and support. As we shared our challenges and successes, we learned anew how wonderful this support group really is. A summary of comments is given below.
The meeting was adjourned at 12:30.
Respectfully submitted,
Marty Foxx secretary/treasurer
Attendance:
Diane Davis, Marty Foxx, Cheryl Brackin, Lorraine Frew, Adrienne & Ed Stallworth, Sissy Morel, Betty Goff, Ann Chance, Delores McIntyre, John Blanton, Ruth Parham, Archie Ivey, Harvey Varnadoe, Dan Shehan, Tom Schendorf
The members of CEPSA would like to thank the New Jersey Department of Health and Senior Services for their donation of 200 wallet-anesthesia & PPS warning cards that alert emergency and medical providers of polio survivor’s unique health care needs. In addition, a special thank you goes to Ruth Parham for giving the information about these cards to CEPSA at the May meeting. The cards will be available at CEPSA’s June meeting. Those who are unable to attend the meeting will receive their card in the mail. Diane Davis
Our next CEPSA meeting is June 26th. Again, we are looking forward to seeing everyone. We all need each other for help and support.
Happy Birthday …
June
Delores McIntyre – 10
Ed Stallworth – 12
Ruth Parham – 14
Janet DiClaudio – 17
Harvey Varnadoe – 22
Joey Carroll – 29
July
Joan Page - 17
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
Everyone have a great Birthday!
Let’s get together!!!
Everyone enjoyed our summer luncheons last year so we will continue it this
July and August. The dates will be July 24th, and August 28th. We will meet at Johnny Harris restaurant, 1615 E. Victory Drive, Savannah. You can call (912) 354-7810 for directions. Of course it will be “Dutch Treat.” This gives us the chance to catch up with each other during the summer months.
Members Concerns
Danny Jenkins Hattie Evensen
Lorraine Frew
Thought for the month
Flag Day ![C:\Documents and Settings\Charlotte Richter\Local Settings\Temporary Internet Files\Content.IE5\4O46ZIDB\MC910217052[1].png](images/clip_image002_037.jpg){kind=small}
is observed in the United States on June 14th. It commemorates the day in 1777 when the Continental Congress adopted the Stars and Stripes as our flag. It then had only 13 stars to match the 13 strips. It is not an official national holiday but in Pennsylvania it’s a legal Holiday. It was first observed to celebrate the 100th anniversary of the selection of the flag. President Harry S. Truman officially recognized June 14th as Flag Day by signing the National Flag Day Bill.
SPECIAL CONTIBUTIONS
Memorial Gifts:
Tony and Lavonne Calandra asked that remembrances for Tony’s mother, Mary Rose Calandra, be sent to the Coastal Empire Polio Survivors Association. As a result, CEPSA has received donations in memory of Mary Rose from the following:
Arthur and Molly Gignilliat, Janet DiClaudio
Mr. and Mrs. William Austin, Cheryl Brackin
Beverly and Gene Jarvis, Marty Foxx
Fay K. Crowe, Betty and Gene Goff
Donations of supporters:
Diane Davis Velma Underwood Kenneth Salter Ann Chance
Adrienne Stallworth
Honorary donations:
Total number polio cases YTD 2010 Total 2009
Globally 237 1604
In endemic countries 52 1256
In non-endemic countries 185 348
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.