The Lighthouse

                                                         Coastal Empire Polio Survivors Association, Inc.

                                                                                 Newsletter September, 2011

                                                                                                                     Vol. XIV, No. 7

Shining Light on Post-Polio Health                                                                 

www.coastalempirepoliosurvivors.org                 

                                                                                                Our next meeting September 24th

The President’s Message…   

As William Faulkner wrote “The Long Hot Summer,” I can’t help but feel we have just lived through his oppressive summer. All the TV stations reported that this was indeed the hottest summer on record ever!! With sky rocketing electric bills we all tried to manage the heat as best we could. I know I read in one of our polio books, that excessive heat affects us the same way excessive cold does. And here I thought, and was told, that I was moving to the perfect year-round weather. Didn’t I write about the freezing weather we experienced this past winter?

I have had several meetings with Rotary Clubs this past month. I spoke to about 125 Rotarians two weeks ago and am scheduled to speak to the Okatie Club on August 30th.     I have thanked them as a polio survivor for the outstanding work they have done.  Since this will be our final walkathon, let’s all put our fundraising over the top.

Everything is pretty much in the works for our October 8th walk. We have three very good restaurants supplying us with food and drinks after the walk. Water will be provided all along the beach, and with the fresh air and breezes, I’m sure all will have a great day.

Once again this year we will be kicking off the event at the Holiday Inn Oceanfront Hotel in their parking lot. It has very easy access to the beach walk. Registration is at 9:00 AM, and the walk will start at 10:00 AM. I know last year we had a large group staying at the hotel the night before. We did get a special rate which is $99.00/night. When making a reservation tell the clerk it is a special MAMI rate. Check to be sure the rate is correct.

I don’t need to tell you how important it is that everyone participates in raising funds for this event. Since this will be our last go-around with the “Heel to Toe for Polio” walk, it is also our last chance to raise the money we need to keep up the projects that CEPSA has initiated. All the chairs, scooters, batteries, walkers, and bath chairs that we have been supplying to you, with no cost to you, require money. I know many members will raise several hundreds of dollars, but just think, if everyone receiving this newsletter raises just $50 or $100 how much more we could do. We could help out polio survivors who have fallen upon hard times and need a helping hand. I realize we are just a small group, but with our “can do” attitude, anything is possible. Please make the effort to help out.

In January of this year I reapplied for a Grant from The Sunset Rotary Club on Hilton Head Island. About two weeks ago I learned that we were approved for this Grant. The Sunset Club put up $2,500 and their District matched it with another $2,500. The money will be used by the Rotary to locate, purchase and refurbish scooters and power chairs for CEPSA members to use.

Need Help Getting Around?

Has your lack of mobility kept you from getting around easily inside your home? CEPSA is here to help you. Of our 100 members we actually only see about 25 on a monthly basis, maybe an additional 15 on a yearly basis (at our birthday party and our banquet), so that leaves many of you that we have little knowledge of your capabilities in getting around. Several years ago we started a scooter and powerchair program where we obtained these mobility items, refurbished them, added new batteries, and have GIVEN them to our members FREE of CHARGE. Recently we have obtained a Grant from the Sunset Rotary Club on Hilton Head Island to help us pay for this project. If you are in need of a scooter or powerchair please call me, Jim Veccia 843-837-1230, your Care Team Leader or any Board member and we will make arrangements to bring the mobility unit to you. With this scooter or chair it may enable you to go outside in your yard or travel around your area. If you feel a mobility unit will improve your quality of life, please call today!!

Jim Veccia, President            

Note: All checks payable to Heel to Toe, Mail to Jim Veccia, 5 Spartina Pt. Hilton Head, SC 29926

General Meeting Minutes, June 25th

President Jim Veccia welcomed everyone.

Founder Cheryl Brackin led the Pledge of Allegiance.

The inspiration was done by Terri Dunnermann.  She read a story about Churchill and Fleming and who they grew up to be.

Jim Veccia called the business meeting to order at 10:40 am.

The minutes of the May 2011 meeting were approved as published.

The Care Team Leaders gave their reports.

The Treasurer’s Report was presented by Marty Foxx.  It was accepted as presented.

Old Business:

            CEPSA purchased a go-go scooter from Integrity Medical this year.  Richard Warden has one like it.  His wife demonstrated how to unassemble and reassemble it.  It took her 45 seconds to take it apart and a little longer to reassemble it.  She gave the audience several tips when she was doing it. This scooter is available to all members to borrow.

            Jim Veccia read a Letter to the Editor titled “Tybee rolls out the unwelcome mat” by Richard Graham’s daughter Cindy Metzger.  Sally Luck stated that it was no better on Hilton Head.  She suggested that we work on getting that corrected and in the meantime take vinyl to put over the sand to make it accessible.

            Heel-to-Toe fliers were distributed.  Jim Veccia stated that 2011 will be the last year for this event because Rotary International will have met the challenge set by Bill Gates.  Ask your physicians, dentists, pharmacies, stores and any businesses you deal with to help us reach our goal.  He will send a letter to all active and inactive members regarding the event and asking us to raise funds. 

New Business:

We will have lunch at The Exchange in July and August at 12:00 noon.  Members will be notified by e-mail.

Harvey Varnedoe suggested that we get T-shirts for the new members to wear for the Heel-to-Toe for Polio Walkathon on Saturday, October 8, 2011.  He would have time to get them for the event.

Program:

Vice President Diane Davis did a presentation on Nutrition for Polio Survivors and exercise.  She distributed handouts on good nutrition with everyone.  The information will be printed in this newsletter.

The meeting was adjourned at 12:45 pm.

Respectfully submitted,  Janet DiClaudio, Secretary

HAPPY BIRTHDAY!

    September 

James F. Smith –3

Cheryl Brackin –6

Danny Jenkins –10

Ed Luck –11

Betty Johnson –16

Patrina Johnson –19

Richard Hall –24

Dot Parkhurst –27

Hugh Mann –29

      October  

Billy Ray Washington –3

Eileen Boyle –5

Dan Shehan –6

Hattie Evensen –7

Harvey Varnadoe –15

Beverly Jarvis –23

Adrienne Stallworth –31

Enjoy your Special Day!

MEMEBERS CONCERNS

Within our special group we have had to deal with many injuries, surgeries and other health related issues these past few months, please keep each other in prayer and thoughts.     

Beverly Jarvis             Eileen Boyle

Lorraine Frew             Lavonne Calandra

Delores McCall          Terri Dunnermann

Betty Goff                   Sally Luck

Hugh Munn                 Janet DiClaudio

Eunice and Tom Newcomer

Ann and George Finley

Harriett and Dale Merritt

New members I need your birthdays.

Month and day, not year!!

I have e-mails but would like to have you on the birthday list.

Please e-mail me at clrichter1@comcast.net . Thanks

General Meeting, June 25, 2011 - Sharing Our Strengths: Questions & Answers                                             

1. Are there some specific vitamins that are especially helpful for polio survivors?

2. Since my doctor said I should be eating more protein during the day, mainly with meals, does anyone know if there are protein pills that may be easier to take on a regular basis than trying to figure out if I am taking enough protein for the day? Also, does too much protein raise your cholesterol level?

These two questions are best answered by eating nutritious well-balanced meals. I’ve been researching nutrition for several years because I can’t take cholesterol-lowering drugs or bone health medications. My doctor said I wouldn’t be able to lower my cholesterol with diet. But I could try to prove him wrong. I said, oh, I will. Shouldn’t say that to polio survivor. In one year my cholesterol went from 224 to 211, my bone density test showed slight improvement and I seldom have migraines anymore. I’m excited to share with you what is working for me. The following information helps us to get back to the basics of healthy eating and the benefits from striving to do so. Diane Davis

Nutritional Points for Healthy Living

Research by Diane Davis

• Eat 7 to 9 Servings of Fruit and Vegetables a Day.

Studies show that fruits and vegetables are antioxidant-packed and can cut your risk of heart disease up to 70%, diabetes 40%, lung cancer 30% and breast cancer 20%. Top antioxidants: prunes, raisins, blueberries, blackberries, garlic, kale, cranberries, raspberries, strawberries, 100% pomegranate juice, and spinach. A new study shows drinking beet juice increases blood flow to the brain and may fight the progression of dementia. Beet roots contain high concentrations of nitrates that help open blood vessels in the body, increasing blood flow and oxygen to places lacking in oxygen. Previous studies have shown that nitrites — also found in high concentrations in celery, cabbage, and other leafy, green vegetables like spinach — widen blood vessels. Dark Green vegetables such as kale, chard, collard greens, bok choy, broccoli, asparagus and green beans are packed with iron, vitamins A and C, calcium and phytonutrients. These are very filling, high in fiber and low in calories, making them perfect foods to keep your heart healthy and your waistline slim.

• Choose Low-Fat Protein Food Sources

It is best to get protein from the right foods rather than shakes or other ways. When you hear “high protein diet” that doesn’t mean eliminating any of the other basic food group. Lean meat, poultry and fish, low-fat dairy products, yogurt and egg whites or egg substitutes are some of your best sources of protein. Be careful to choose lower fat options, such as skim milk rather than whole milk and skinless chicken breasts rather than fried chicken patties. Fish is another good alternative to high-fat meats. Certain types of fish are heart healthy because they're rich in omega-3 fatty acids, which can lower blood fats called triglycerides. You'll find the highest amounts of omega-3 fatty acids in cold-water fish, such as salmon, mackerel and herring. Other sources are flaxseed, walnuts, soybeans and canola oil. Legumes — beans, peas and lentils — also are good sources of protein and contain less fat and no cholesterol, making them good substitutes for meat. Substituting soy protein for animal protein — for example, a soy burger for a hamburger — will reduce your fat and cholesterol intake.

• Eat Nuts Every Day.

A mere ¾ ounce of nuts (almonds, walnuts, pecans, peanuts) daily slashed the risk of heart disease and diabetes 30% and Parkinson’s disease 43% in Harvard studies. Walnuts are one of the best plant sources of protein. They are rich in fiber, B vitamins, magnesium and antioxidants such as Vitamin E. Nuts in general are high in plant sterols and omega 3 fatty acids. Walnuts, in particular, have significantly higher amounts of omega 3 fatty acids as compared to other nuts. Almonds are a good source of calcium that helps to prevent Osteoporosis. Keep in mind; you could end up canceling out the heart-healthy benefits of nuts if they are covered with chocolate, sugar or salt.

• Eat Fatty Fish 2 or 3 Times a Week.

Provides omega-3 fatty acids to help prevent heart disease, arthritis and brain dysfunction. Fish oil protects brain cells, and suppresses inflammation and irregular heartbeats. In a new study, eating fish just once a week cut the risk of Alzheimer’s disease 60%. Best: salmon, sardines (fresh and canned), mackerel and herring. Salmon is a perfect food to substitute meats. With increasing public concerns over farmed salmon, choose wild salmon. Most canned salmon are wild.

• Restrict Red Meat to Once or Twice a Week. 

Recent evidence ties red meat (beef, pork, veal and lamb) to increase cancer of the colon, pancreas, breast, prostate and kidney. Reason: The cancer causing substance, Carcinogens forms in meat during cooking. Worst cooking methods: frying, barbecuing. Best: baking, stewing, boiling, microwaving.

• Eat “Good” Carbs… Slash “Whites - Bad” Carbs

(Slash refined-grain products: white flour, white bread, white rice, white pasta, white sugar, and white potatoes) Such foods cause rapid spikes in blood sugar and can double your odds of heart attack, diabetes and certain cancers, while making you fat. Eat “Good” carbs that produce a slow rise in blood sugar. Best: Fruits and vegetable, whole-grain, high-fiber breads and cereals and legumes (beans, lentils, peas, soybeans, and peanuts).

• Eat 25 Grams of Fiber a Day.  

Fiber lowers cholesterol and blood pressure; cuts the risk of heart disease, diabetes and cancer; and helps control weight. Super sources: All-Bran, Fiber One, oat-bran cereals, dried beans and barley.

• Eat at Least 3 Servings of Whole Grain Foods a Day.

Whole grains are a good source of B vitamins, Vitamin E, magnesium, iron and fiber, as well as other valuable antioxidants not found in some fruits and vegetables. Whole grains have been shown to reduce the risk of heart disease by decreasing cholesterol levels, blood pressure, and blood coagulation, also reduces the risks of many types of cancer, and helps regulate blood glucose in people living with diabetes. Other studies have also shown that people who consume more whole grains consistently weigh less than those who consumed less whole grain products. Most of the antioxidants and vitamins in whole grains are found in the germ and the bran of a grain. A grain is considered whole when all three parts are present – bran, germ and endosperm. Read labels carefully! Foods labeled with the words "multi-grain," "stone-ground," "100% wheat," "cracked wheat," "seven-grain," or "bran" are usually not whole-grain products. Brown color is not an indication of a whole grain or whole wheat! When determining if a packaged food product contains whole grain or not, look for the word "whole" in the ingredient list. Also, look for the Whole Grain Stamp.                                                                                                                                                                            

• Drink Eight - 8 Ounce Glasses of Water a Day.

Water is your body's principal chemical component and makes up about 60 % of your body weight. Every system in your body depends on water. For example, water flushes toxins out of vital organs, carries nutrients to our cells and provides a moist environment for ear, nose and throat tissues. Lack of water can lead to dehydration, a condition that occurs when you don't have enough water in your body to carry out normal functions. Even mild dehydration can drain your energy and make you tired.

        Drink 3 or More Cups of Green Tea a Day.

“Real” Green tea (not herbal) helps to reduce the risk of heart disease, cancer, osteoporosis, infection, age-related mental decline, dental cavities and weight gain. In one study, three cups a day cut the risk of heart attack 11%. Brewed caffeinated green tea is the least processed tea and has the most antioxidants; bottled and instant teas have the least. Best if a hot cup of brewed green tea is sweeten with 100% pomegranate juice or look for 100% natural berry flavored green tea bags, not sugar.

• Use Olive Oil - Avoid Trans Fats.

Olive oil is the main choice of people who live the longest and have the least heart disease, cancer and other chronic diseases. Deadliest: Trans fats in some margarines and baked goods, such as doughnuts, clog arteries more than saturated animal fats do. Check food labels for “0” Trans Fat, and low Cholesterol and Sodium content.

• Shave portions by one-third to half.

Large portions are a major cause of weight gain and obesity. In studies, adults served oversized portions ate 30% more calories than a small portion and children devoured 25% more calories. Choose foods that give you the most nutrition from your calories instead of empty calorie choices such as high-fat, high-sugar foods and drinks, snack foods, candies and soft drinks. A serving size is a specific amount of food, defined by common measurements such as cups, ounces or pieces. For example: one serving of cereal, pasta or raw vegetables is 1/2 cup, about the size of a baseball, a serving of meat, fish or chicken is 2 to 3 ounces, about the size and thickness of a deck of cards, a serving of cheese is about the size of 4 dice. Judging serving size is a learned skill.

• Reduce the Salt in Your Food.

Eating a lot of salt can contribute to high blood pressure, a risk factor for cardiovascular disease. Reducing the salt in your food is an important part of a heart-healthy diet. The American Heart Association recommends that healthy adults eat less than 2,300 milligrams of sodium a day (about a teaspoon). Although reducing the amount of salt you add to food at the table or while cooking is a good first step, much of the salt you eat comes from canned or processed foods, such as soups and frozen dinners. Eating fresh foods and making your own soups and stews can reduce the amount of salt you eat. If you like the convenience of canned soups and prepared meals, look for ones with reduced sodium. Another way to reduce the amount of salt you eat is to choose your condiments carefully. Many condiments are available in reduced-sodium versions, and salt substitutes can add flavor to your food with less sodium.

• Make Smart Choices from the Four Food Groups for Each Meal.

The best way to get the fuel your body needs is to enjoy a wide variety of nutrient-rich foods that are packed with energy, protein, vitamins and minerals from all four of the basic food groups.

• Fruits and Vegetables
• Whole Grains
• Low-fat Milk Products
• Lean Proteins Fish/Poultry and/or Protein Rich Foods

The following food chart is an excellent resource that shows the benefits of certain foods:

Food Chart

Question 3.Are there any special techniques a person walking with crutches can use to reduce the risk of shoulder injuries, such as rotator cuff injuries, etc.? This is a good question because avoiding shoulder problems applies to all of us whether we walk with crutches or not. Dr. Richard Bruno’s book, “The Polio Paradox” reports that all polio survivors should not use weight bearing or resistance exercises. This includes no weights, stretching bands, arm or leg exercise bikes; no walking “on or off” tread mills, and no water aerobics or even walking in the water because this fights against the water’s resistance. Polio survivors should only do warm water buoyancy stretching. Dr. Bruno reports that almost as often as not, exercise for polio survivors either had no effect to strengthen muscles …. or actually decreased muscle strength, and increased physical and muscle fatigue.  Dr. Richard Bruno’s Golden Rule for the treatment of Post-Polio Syndrome is… "If what you do causes pain, fatigue or weakness, don't do it!"  The Golden Rule does not mean that polio survivors should sit home and do nothing. That’s not our nature, anyway. The Golden Rule means that polio survivors should stop exhausting themselves, especially concerning exercise. Remember the saying: exercise until you feel it burn… well Dr. Bruno reports when exercising polio muscles… "Feeling the burn" means nerves are burning out. Both The Post-Polio Institute and Warm Springs long-term follow-up studies find the same thing. All Post-Polio Syndrome symptoms, fatigue, pain and muscle weakness, decrease when polio survivors stop exercising and follow The Golden Rule. 

~ So what do we do to get exercise? I have found that stretching and muscle-flexing is a safe way to exercise, increase range of motion and decrease pain. I’ve been walking with crutches and full-length leg braces since I was 2 years old. In my late 30’s I started having bursitis off and on in both shoulders and then early 40’s a frozen shoulder in my right shoulder. My doctor said that I would need surgery. I told him I wanted to do whatever it takes to avoid surgery. He sent me to a physical therapist that had treated polio survivors during the epidemic years who help me to avoid surgery.

~ Over the years through trial and error, I have developed a stretching and muscle-flexing program. I use over the head arm stretching and hand and wrist flexing to balance the constant downward motion of carrying my body weight with my shoulders, arms and hands.  We need to find balance in our exercise. Shoulder flexibility is important even if you don’t walk with crutches. Stretching & muscle-flexing helps to decrease pain and increase range of motion.

~ We should do only what our muscles can do. Try putting your arm out to the side and stretching your fingers as wide as you can as you lift your arm over your head, you can feel the muscles flexing in your wrist and arm? No weights and no resistance, just doing only what your muscles can do whether they are polio muscles or not. We should be careful not to pull our arm over your head with the other hand when doing arm lifts or pull on the back of our shoulder; and don’t push our face toward our shoulder with our hand to increase range of motion in our neck. We can increase range of motion safely by only doing what the muscles themselves can do in the neck, shoulders, arms and legs, no pushing or pulling with your hand.

~ Only do gentle, non- fatiguing lifting therapy to help maintain muscle strength in legs and arms. Bruno calls this ankle pumps, knee pumps and arm pumps. (Up and down movement several times) Bruno reports non-fatiguing pumps is not to increase strength but to prevent the weakness that can be caused by a leg or arm being immobilized in a brace for most of the day. Example: Lying flat on the bed, lift head off the bed a few inches, bend your knee or raise you leg or arms one at a time. Remember to always start exercise with a small number of stretching, muscle flexing and lifting. If you feel a pull in a muscle in your back while lifting, reposition yourself on the bed to be straight and flat. If at any time your feel weakness, pain or fatigue… stop. Exercise slowly, be careful if you increase the number. One time I increased the number of each stretching, flexing and lifting therapy at the same time. It took me a week to recover from the exhaustion. I stopped all therapy for about a month. And when I started again, I only did the small number I started with. I learned the hard way. Now I am doing only what my muscles can do without increasing Post-Polio symptoms. Bruno reports that even a low number of exercise is beneficial to maintaining strength and range of motion and reduce pain. Maintaining the muscle strength you have is important to reduce joint pain because the muscles support the joints. I have 0 muscle strength in my left leg and very little muscle strength in my hip. Also, I have bone deterioration in my left hip. I maintain the strength and pain by doing muscle flexing with the small amount of muscles I have and doing only what those particular muscles can do. It makes sense if you have weak muscles around a joint you will have pain in the joint because of weak muscle support. Also, consider a brace to support the joint. If you use a cane, walker or crutch and not a leg brace when needed you will have shoulder and back pain from over compensating which adds to the risk of falling.                                                                                                                      

~ It’s wise to have a Manual Muscle Test before surgery or therapy so the Physical Therapist knows not to over extend each muscle more than the muscle tests. Dr. Holly Wise, PT,PhD said that you cannot strengthen a polio muscle beyond the muscle scale for that muscle.

Manual Muscle Test Scale:

Normal Grade 5:  Patient can hold the position against maximum resistance and through complete range of motion.

Good Grade 4:  Patient can hold the position against strong to moderate resistance, has full range of motion.

Fair Grade 3:  Patient can tolerate no resistance but can perform the movement through the full range of motion.

Poor Grade 2:  Patient has all or partial range of motion in the gravity eliminated position.

Trace Grade 1:  Slight contraction, but no visible movement of body part detected.

Zero Grade 0: Complete lack of muscle contraction. 

~ Deep Breathing Exercise: Research shows that one of the best ways to combat stress is through deep breathing

exercises. As we grow tense, it is normal to take shallow breaths which means less oxygen is getting to the brain and muscles. Then, physical tension increases even more. Taking a few minutes off and on during the day to do deep breathing exercise can have the following positive effects: reduce blood pressure, increase alertness, reduce tension headaches and stress, aid in digestion, decrease fatigue and increase the quality of your life.

Breathing Technique:

1. Position yourself in a comfortable position, with shoulders relaxed.

2. Close your mouth and slowly breathe in through your nose while counting to four.

3. Slowly breathe out completely through your mouth, counting to eight as the air leaves your lungs.

4. This is one breath. Repeat three more times.

~ Conserve Energy to Preserve Strength and Reduce Pain:  When I started having shoulder problems in my late 30’s I stopped shopping at the mall and doing things I used to do that involved a lot of walking. At the time, I thought I would rather give up those things than to use a wheelchair. Then my mother started encouraging me to get a scooter.  Like most of you, I have always been a fighter and thought it would be giving in to use a scooter. One Christmas time, my daughter wanted to go shopping at the mall, so I used one of the mall scooters. We enjoyed the day so much; I made arrangements to get a scooter of my own. The first time I used my new scooter I could not believe I waited so long. I discovered I could rest in the scooter while getting housework done. I made myself stay in the scooter around the house by leaving off my braces in order to save my shoulders. Now I have a lift for my scooter and enjoy shopping again. Also, I don’t have pain in my shoulders now unless I over do. Using a scooter or motorized wheelchair is not giving in… it gives us the opportunity to live again. Studies show that polio survivors who pace activities and conserve energy, take rest breaks during the day, and uses assistive devices such as (a brace, cane, crutches, wheelchair or scooter)… have up to 22% less pain, weakness and fatigue. Dr. Holly Wise reports that if you have to hold on to furniture or the wall to walk around the house then you need to check into getting braces and crutches or some kind of accessible equipment to prevent falling.

Tip of the Month…

Make a list of people and their phone numbers

that should be contacted in the event of an emergency.

Keep the information in your wallet behind your

driver’s license.

The summer is over and we need your help!  Please share with us your thoughts for programs and newsletter articles for the CEPSA support group. We try to stay on top of it all.

We have been blessed with new members to share their concerns and polio stories. Looking forward to sharing and caring….

In the past 3 months we have had three members break their leg in several places. Remember what Holly Wise told us, if you need to hold walls or furniture when walking, you need either a chair or a walker. Please don’t be stubborn, heed her words, and get yourself the equipment you require. We can help!!

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.