Meeting Notes

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2008 Meeting Notes

Written by Ron Swor

Dr. Cathy Harper-Hogan from Warm Springs

Atlanta Post-Polio Association

Summary of Tour of “The End of Polio” Photography Exhibition

Centers for Disease Control and Prevention in Atlanta

February 21, 2008

Fourteen members of the Atlanta Post Polio Association attended the above entitled photography exhibition that was sponsored by the Global Polio Eradication Initiative and the Global Alliance for Vaccines and Immunizations organizations.* These two organizations enlisted the talents of world-acclaimed Brazilian photojournalist Sebastiao Salgado to document the remaining global effort to eradicate the crippling disease of poliomyelitis. Mr. Salgado began this project in 2001 in Somalia and later in Sudan, India, the Democratic Republic of Congo and Pakistan. In these countries he witnessed mass vaccination campaigns against polio. Through his excellent black and white photographs, Mr. Salgado captured the emotions of the young and old vaccine recipients and their living conditions. Currently, there are only four nations experiencing polio epidemics. They are India, Pakistan, Nigeria and Afghanistan. Hopefully, success in these nations will result in the eradication of polio forever.

Viewing the various photographs one was able to witness the eagerness and  apprehension of the various family members waiting in long lines to receive the vaccine. The process consisted of two drops of the liquid form of the live polio virus being placed into the mouths of the recipients via a small, flexible, plastic bottle. The taste was foul compared to having it in a sugar cube and that response was captured in the faces of the recipients. However, this did not deter the people from traveling great distances to get the vaccine.

All of the APPA members were appalled by the fact that a live polio virus was being used when they considered the additional endangerment it could cause. However, a plausible explanation for using this form of the vaccine surfaced. The polio physician present explained that these people live in an environment where there is a constant exposure to a natural polio virus. It abounds in their environment unlike any similar situation found in the U.S. Because of this daily exposure to this natural live virus, these people have a limited but a natural immunity developed in their bodies. However, as the threat of getting polio remains very high in their nation, families are very eager to get the vaccine to save them from getting the disease. The danger of additional fecal exposure from employing the live polio virus vaccine is, therefore, relatively small and inconsequential compared to the natural exposure of the live virus. In addition, it was indicated that a more effective immunity is achieved by passing the live polio virus through the stomach and intestines of the recipients. This explanation calmed the concerns of the APPA members.

It was conveyed that in the countries visited, people would travel great distances to get the vaccine during these national campaigns to spare them from this disease. Even opposing military members would come in peace to get their vaccine treatments. One photograph showed a migratory tribe that sustained their tribe with their extensive cattle herd. This tribe was eager to get the vaccine and insisted their cattle also receive the vaccine.

Other photographs showed the production of the vaccine and specialized laboratory analyses conducted in France to control the virus quality. They also conduct studies to track the nature of the last strains of wild poliovirus in the world.

Summary provided by Ron Swor

*The End of Polio was presented in Atlanta by the Global Health Odyssey, National Center for Health Marketing, Coordination Center for Health Information and Service, and Global Immunization Division, National Center for Immunization and Respiratory Diseases, Coordinating Center for Infectious Diseases. The CDC received a grant from a Board Member to sponsor this exhibition. For the tour the CDC Director of Exhibitions, Ms. Shaw, arranged for one of the polio eradication field workers and a Pakistani polio physician to be present to address questions.

Click here to see all the pictures from the exhibition.

March 01, 2008   Polio Monthly Meeting Review

We are now meeting on the 7th floor Penthouse at Shepherd and what a wonderful view we have.  Thank you Dennis and Fay McCaw for the delicious homemade goodies!

Our guest speaker was Bobbie Dees, Physical Therapist and Feldenkrais Practitioner.

The Feldenkrais Method was invented by Moshe P. Feldenkrais  (1904-1984)

Bobbie explained that all the movements are done slowly, gently, with intention, loose, enjoying, then resting.  The movements are done best on the floor or in bed where you can totally relax, but can be done sitting also.  The movements are not done with pain or determination.

The Method is not a medical or massage technique; it is an educational process.

As we did some of the movements, we were asked to be aware of our own body and breathing.  We all felt very relaxed and decreased stress.

Bobbie can be reached at 770-842-0513  MOVEMENT IS LIFE or bdpt@bellsouth.net.  You can see her in group or individual therapy.

Linda Priest was presented an award in recognition of her many years of service and as out-going president of APPA.

APPA's meeting for April, 2008 was of a social nature centered around a bingo party and it can truly be said that 'a good time was had by all'.  Our resident bingo expert, Vicki Crowell, once again served as our caller and provided the necessary equipment.  She's a 'must have' when we have bingo.  Marie and George Moore wowed everyone with their offerings of  'a light lunch'.  We were all convinced that their definition of 'light' was different from ours!  They had ham, chicken salad, seafood salad, breads, cheeses, pasta salads, chips, brownies and chocolate dipped strawberries!  It was an absolute feast and a true labor of love!  Game prizes featured gift cards from Walmart and Target, Staples and Office Depot, AMC theaters, Publix and Kroger, O'Charleys, Applebees, Chick-fil-a and Longhorn's, Linens and Things, Home Depot and Lowe's, Barnes and Noble, you name it.  Several attendees won more than one game.  Don't you wish you would had been there?!?

The May meeting was a Rap Session with focus on members needs in dealing with Post-Polio.  Lively discussion seemed to center on stretching, exercises and alternative therapies and supplements used by other APPA members.  Since the June and July programs were the only remaining openings for meeting topics in 2008, it was requested that these subjects be considered.  As a result for our June 7 meeting, APPA members that wish too may present alternative therapies or supplements they use to the membership.  The time allotted will depend on the number requesting to do this.  To participate please contact Cheryl Hollis at holl4078@bellsouth.net with your name, contact number and product or therapy name.  Then for our July meeting the topic of stretching and exercises will be presented by Lisa Eagan, therapist.

The theme for the first of the three scheduled 2008 Summer Meetings was: “Alternative Therapies and Supplements Used by APPA Members.”

For this meeting five presentations were given by APPA members as follows:

Presenter 1. Marie Latta

A. Marie addressed the issue of having difficulty falling asleep. For this problem she resolved the problem with Melatonin. Normally, she falls asleep in about 10 minutes after taking a 300 mg tablet of this natural product. As our bodies induce sleep releasing melatonin to the brain, this non-prescription drug appears to work in conjunction with our natural sleep cycle. Marie had used the prescription medication Adavan, for several years but it no longer works for her. Melatonin is not an expensive supplement (around $5 for 100 or so tablets). Marie encouraged her audience to test the effect of melatonin for themselves.

B. To help her open canned food containers, Marie discovered a “3 in 1 Opener.” This item can be purchased at the following Internet web site:

http://www.sammonspreston.com/Supply/product-list.asp?subsection=1623

C. Marie is a strong advocate of Isometric Muscle exercises and encouraged everyone to use this exercise procedure to help them retain their muscles and, equally important, to make them feel better. She said it is not necessary to have a fixed time each day to conduct these exercises and recommended doing them during any idle time period each day.

Presenter 2. Linda Priest

A. Linda found that using a standard kitchen hand-held blender is too bulky and heavy for her to handle. She purchased a light-weight, hand-held blender that she can easily stick into a drinking glass or bowl to blend foods and/or liquids. It is a Smart Stick by Cuisinart; these hand-held blenders are commercially available.

B. In addressing a familiar problem relating to body muscle aches and cold feet, Linda has been using cloth products filled with some kind of kernels that can be heated in a microwave oven and using them to treat various pain areas. These products come in various shapes to accommodate neck and shoulders (Neck Ease), or in the form of slippers (Foot Ease). Linda uses one that appears to be a shapeless bean bag that, after heating in the microwave oven, she places over her feet and ankles to warm them up. The comfort benefits are quickly derived and the heat radiation lasts for a while. The warming process can be easily repeated as needed. These products appear to have a long service life.

These various items can be reviewed at: http://www.ebodysense.com/. Direct contact can be made to Body Sense at 212 North Shore, Oakwood Hills. IL 60013  (847-516-7018). Linda commented that Body Sense sells hot and cold aroma-therapeutic products that are both soothing and relaxing to her when used.

Presenter 3. Mark and Margaret Carson

Mark and Margaret are local representatives for a health supplement with powerful, natural anti-inflammatory properties. This supplement also contains more than 40 different antioxidants such as Xanthones, Catechins, polyphenols and others. The product is called Xango 3Sixty5. The origin of this supplement is a mango-type fruit, called Mangosteen. This product is grown in Thailand, and other Southeast Asian countries, as well as Central and South American countries and Africa. The portion of the fruit that contains the desired ingredients is found in its thick rind. This product is sold in bottles the size of wine bottles and is a red liquid. No artificial sweetener is added and it has a good taste. Two dosages each day are recommended. A money back starter kit is provided if not satisfied.

Mark provided a pamphlet that discussed the extensive scientific studies conducted that identifies the capabilities for the prevention of diseases and the improvement of health. For more information contact Mark and Margaret at: www.createmysuccess/mcarsonmnmcarson@yahoo.com. (678-225-7061)

Presenter  4.   Cheryl and Jack Hollis

A. Briefly, Cheryl reported her success in using Neuro-Muscular massage therapy for the relief of her muscle pain and discomfort.

B. Cheryl and Jack are local representatives for a nutritional product called “Juice Plus +.” It is very difficult for the average person to prepare and consume 9-13 raw fruits and vegetables each day as recommended by national Cancer and Heart organizations. To help people reach these nutrition goals to prevent diseases and to promote their health, a product that contains carefully condensed versions of these fruits and vegetables in tablet form is available. Juice Plus + contains seventeen servings of fresh, raw fruits and vegetables and grains that have been juiced, carefully dried, and placed in a capsule or in chewable form. Water, Salt and Sugar have been removed leaving the vitamins, antioxidants, trace elements, minerals and phyto-nutrients intact. These ingredients are reported to reduce the risk of heart attack, stroke, blood clots and Alzheimer’s disease.

Juice Plus+ comes as two separate products: Garden Blend (10 vegetables) and Orchard Blend (seven fruits). Cheryl recommended using this product to provide nutrition for children with eating issues to promote their health. For more information contact the Hollises at: www.WholeFoodNutritionSite.com (800-460-5251).

Presenter 5. Sylvia Gray

A. Sylvia faces a problem that most post-polio patients can understand: Fatigue. To offset her fatigue, she uses a commercial supplement that comes in powder and capsule forms. She reported that fatigue was gone after six weeks on this supplement. She uses one packet per day of the “Forward Plus” daily regimen, although the recommended dosage is two per day. If the fatigue symptoms start to return she returns to the recommended dosage. She provided the audience with a copy of the composition of this supplement for review. She has no business association with the producer. For more information use the following Internet web site/telephone number:

www.drwhitaker.com (800-722-8008).

B. Relating to the issue of handling pain, Sylvia showed a kit of various size magnets that she uses. Merely applying the magnet to the area causing the discomfort appears to improve circulation in that area. The magnets in the kit are light weight. These magnets were produced by a company named Nikken Magnets.

Closing Discussion

1. A comment was made relating to the use of a product called, “Peppermint Stick” to alleviate headaches. The small stick container is labeled “For Headaches with Menthol Crystals” and as for “Natural Headache Relief.” The stick is used to rub this treatment on the temples, forehead and back of the neck for relief. Information can be obtained from the Internet web site:  SentsofAmerica.com.

2. Concerning exercises to improve breathing, a recommendation to look into Tai Chi or Yoga should be considered. For information on a formal breathing exercise program look at the Internet web site: Clark Enterprise.com.

3. An inquiry was made regarding the use of a simple motion machine being promoted to stimulate blood and oxygen circulation without exercise. One lies on the floor with ankles resting on the two cushioned slots on top of the motion machine. The machine displaces the two legs back and forth motion a small distance. The rate of displacement is fixed. It was reported that people at another Polio Support group reported some success with using this equipment. However, the individual responding reported feeling discomfort in their lower back from the movement and returned the machine.

Submitted by Ron Swor

Disclaimer:

The information provided herein represents what the author believes he heard during the June 8, 2008, APPA meeting presentations. The author is neither medically trained nor an expert in treating Post-Polio symptoms, and, for this reason, may not have recorded an accurate accounting or understanding of the important details discussed. Therefore, neither he nor APPA assumes any responsibility for the accuracy of the information provided. In addition, neither the author nor APPA endorses or recommends the use of any of the supplements identified or any of the equipment discussed by the various members to treat their Post-Polio related conditions. It is, therefore, highly recommended that all and any information provided be confirmed with an appropriate physician or other experts in these areas before applying any of these supplements or treatments on your own. It is hoped that this summary serves to apprise the reader of some available options.

For more information on Dietary Supplements, go to http://www.fda.gov/consumer/updates/supplements080408.html

The theme for the second of the three scheduled 2008 Summer Meetings was: “Exercise presented by Lisa Eagen of ProMotion"

The guest speaker for the APPA July 12, 2008, meeting was Ms. Lisa Eagen, one of Shepherd Center’s Exercise Specialists in the ProMotion Fitness Center. Ms. Eagen has a BS degree and is a Certified Personal Trainer. She is also an Olympian, who represented the U.S. in the 1996 Olympics as a member of Team Handball. The subject of her presentation was Stretching and Exercise.

Ms. Eagen (Lisa) began her presentation by saying that Shepherd Center (SC) has been ranked as the ninth highest rated rehabilitation hospital in the country. She asked the group what doctors are advising on exercising. The responses were varied. One member indicated more stretching than  exercising. Another commented that much of the advice is confusing. In the past doctors discouraged exercising altogether and now they say exercise but do not overdo it. Another said a doctor advised exercise but avoidance of nerve damage. This translated into limiting exercise to produce some minor conditioning but listening to what our bodies are telling us about these exercises. One member asked, anatomically, when are we stretching our muscles relative to exercising?

Recognizing that her audience was confused on these exercise matters, Lisa indicated there are web sites that provide the needed answers. A list of these web sites is attached to this report.

Lisa commented that even very limited exercising can produce positive results. For example, one of the web sites reports that sitting in a chair and doing the modest exercise of individually straightening legs by tightening the quadriceps 4 times a day (holding this horizontal position for only 5 seconds) and 2 times per week caused some improvement. She cautioned to identify signs of fatigue, such as muscle shaking (minor) to prolonged muscle burn (excessive). Normal adult strength exercise routines call for 2-3 sets of 10-15 repetitions, and a less vigorous routine 6-7 repetitions. However, polio patients may have to do less than 6-7. A normal cardio workout program calls for 3-5 workouts per week for 30 minutes each. A minimum exercise program would be 2 times per week. Nonetheless, Lisa emphasized that even simple exercises conducted 1-2 times per day can yield positive results.

As part of the ProMotion program, Lisa works with patients like a personal trainer to determine what exercise regimen is needed to help the patient recover. In answer to a question, Lisa reported that SC no longer offers a Tai Chi class but offers a Water Yoga that is geared to a minimal exercise level. Members indicated an interest in this program which is scheduled on Saturdays at 10 a.m. An effort will be made to arrange a class for one of the APPA Saturday meetings. A regular Gentle Yoga class is offered MWF at 10 a.m. SC also offers a more strenuous land and water fitness class.

Lisa was asked whether there are programs that specifically address exercises for those with scoliosis. The answer was affirmative. Lisa was aware of the Schroth approach to these exercises that the questioner has been reviewing. Written by a professional physical therapist, the Schroth method of scoliosis treatment involves doing specific exercises designed to decrease the influence of gravity and uneven muscle pull. First, the person is taught to understand corrected alignment before performing strengthening and breathing exercises. These exercises require frequent repetition in order to reprogram the body in the more symmetrical posture. The goal of treatment is to develop the ability to incorporate these corrections into daily activities at home and elsewhere. Due to long-standing movement patterns and soft tissue tightness in adults, the exercises generally progress more slowly. The exercises, if taught and performed correctly, should create no pain, but produce a sense of increased mobility and balance. In the U.S. many physicians recommend surgery for people having curves with Cobb angles of greater than 45 degrees. The Schroth Method exercises can be used to maximize the neutral alignment of the spine if surgery is rejected by a patient. The Schroth Method advocates conservative management of scoliosis, but recognizes the fact that in some severe cases, surgery may be the best option. In addition, these exercises can be used before surgery to decrease the secondary soft tissue tightness and after recovery from surgery to facilitate more even muscle pull on the spinal correction. Lisa indicated that regrettably, polio patients appear to have been forgotten as a group in terms of having specific equipment designed to fit their needs.

Lisa said that she provides programs for MS and other patients with a wide variation in physical capabilities. SC has all sorts of programs and specialized equipment to benefit most patients. She described a Functional Electrical Stimulation process where a bicycle is moved using electrical stimulation to patients quadriceps, hamstrings and gluteus muscles to stimulate pedal movement. They have an array of equipment that is used in a recumbent position addressing movement of the arms or legs or both arms and legs. They adapt readily to accommodate power chairs and carts as needed. See photographs attached. These various pieces of equipment are able to provide adequate cardiovascular conditioning and improved circulation without exertion so as to avoid muscle/nerve damage. One question asked related to the benefits derived from using a motorized, mounted bike with no exertion being used. The answer was it could help circulation. Another question was asked whether a 30 minute per day walking regimen broken down into three 10 minute sessions would derive the same benefits. Lisa said that it would if one is able to increase the intensity of the walk for a couple of minutes in the early minutes of the separate walks. The key here is to not overdo it. At SC Lisa prefers to act as a personal trainer with her patients to identify the equipment and individual regimens to provide the needed benefits without hurting the patients. This approach not only educates and empowers patients but also provides emotional, physiological and social benefits. Session costs generally amount to $45. Lisa conducted a tour of the SC workout areas and demonstrated the various equipment that is available. See attached photographs. ProMotion Fitness Center is a regular community gym, so anyone is free to join. For membership details call 404-350-7789.

In addressing questions from her audience, Lisa provided two pages of exercises that may be appropriate for stretching and exercising polio patients. She demonstrated a few to remove some confusion. In response to whether to stretch then warm up or the opposite is best, Lisa indicated that studies show that either way will work. However, she indicated that starting with stretching may avoid muscle pain. A chair aerobics demonstration was given showing that even the basic slow stretching and rotation of the shoulder provided a therapeutic benefit in the members participating.

In the next portion of the presentation Lisa inquired what doctors are requiring in terms of diet for polio patients. The responses ranged from lower fat diets to control weight to a high protein (up to 16 grams) intake for breakfast. Her comment was that the higher protein intake in the morning is good since most people do not eat much for breakfast or enough protein. One member indicated that she started a vegetarian diet as a means for dealing with low energy levels. The results, so far, are positive. She is considering expanding to include fish only, not red meats. One of the members reported that he is a diabetic and is constantly weighing his carbohydrate intake against the amount of medication to take. He reported that he consumes red meat because it balances him throughout the night.

In responding, Lisa recommended working with a nutritionist in order to get the most beneficial food balance possible. Nutritionists (and Lisa) recommend eating 5-6 small meals each day rather than the standard three square meals. She works over 10 hours each day and eats every 3 hours to sustain her strength. Maintaining a good balance of protein and carbohydrate intake will help to sustain energy levels but takes a lot of planning to maintain the right balance and provide food variety. She has lost some weight, although that was not a planned outcome. She has become used to low-fat cheeses and sugar-free puddings but has occasional chocolate treats and restaurant foods. She discussed with one member a book entitled 5-Factor Diet, written by Harley Pasternak. The member added that this book is not a fad diet but an eating plan for life. Its success is the result of combining high-fiber foods with lean protein at every meal. Carbohydrates with high fiber content are utilized. This eating plan can lower your cholesterol and blood pressure. The eating plan includes many easy recipes with few ingredients. Familiar with this book, Lisa reminded members to use smaller portions to control weight gain.

APPA is very grateful to Ms. Lisa Eagen for volunteering to enlighten its members on the importance of proper stretching, exercising and dieting, and the many benefits that can be derived. The information she provided was warmly received and gave a better understanding of the benefits to the members. Ms. Eagen may be reached at SC either by telephone or email as follows: 404-350-7769; Lisa_eagen@shepherd.org.

Written by Ron Swor

Disclaimer:

The information provided herein represents what the author believes he heard during the July 12, 2008 presentation. The author is not trained in exercise therapy, dieting, nutrition or in the treatment of polio or post-polio patients. For this reason, the author may not have recorded an accurate accounting or understanding of the important details discussed. Accordingly, neither he or APPA assume any responsibility for the accuracy of the information provided. It is, therefore, highly recommended that all or any information provided be confirmed with an appropriate physician, physical therapist or nutritionist before attempting to apply the stretching, exercises, diets or other treatments on your own. It is hoped that this summary serves to apprise the reader of the vast technology currently available.

The theme for the last of the three scheduled 2008 Summer Meetings was: “Summer Reading - books read by APPA Members.”

More to come