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Guest Network - The Florida East Coast Post-Polio Support Group

Newsletter Volume 6 No. 1
July / August 1998

12 Eclipse Trail / Ormond Beach, FL 32174 / 904 676-2435
(e-mail address:-



* SHALOM by Sally Fradkin
* Advice for People with Post-Polio or Other Neuromuscular Disorders by Augusta Alba, M.D. and Alice Nolan, R.N., New York University Medical Center, Dept of Rehabilitation Medicine, Goldwater Memorial Hospital, Franklin D. Roosevelt Island, New York, NY
* People DO Care
* SKIN CANCER a deadly threat to Floridians by Marsha Knight
* More on Dysphagia Letter from Halifax Medical Center
* Postpolio Dysphagia David W. Buchholz, MD
The John Hopkins Hospital, Baltimore, Maryland, USA
* Long-term care coverage: Who needs it, and how to find it
* Summary of Presentation by Dr. Dawn Sanchez, PhD., to Polio Heroes of TN, April 25, 1998, TOPIC: Research on Post Polio Coping Done with Polio Survivors in Oklahoma
* Control Your Destiny II with Dr. Jacquelin Perry
Reported by Mary Clarke Atwood

Online Reading Navigation Tip - Selecting map of Florida between articles will return you to the above contents.


Sunday, September 13th
Sunday, October 18th
Sunday, November 22nd
Sunday, December 13th - HOLIDAY LUNCHEON

June 1st - 7th was Polio Awareness Week. We received two Proclamations declaring it so:- one was from Governor Lawton Chiles proclaiming June 1st - 7th as Polio Awareness Week throughout the State of Florida. We also received a Proclamation from the Vorusia County Council which was given to David Francy, Donald Rolfe and myself at a County Council Meeting by all members of the Council. Ironically, that same week there was a report on Channel 9 WFTV News (Orlando) that a baby girl had been given the Sabin vaccine and came down with polio a few days later. Her parents, interviewed by a reporter, stated that no one had ever told them of this possibility - if they had they would have insisted on the Salk vaccine. The baby was shown wearing braces all the way up both legs as well as a full body brace. PLEASE be sure to tell every young mother, or pregnant woman, you see to be sure that their baby is given the SALK vaccine and not the Sabin. Explain to them that the oral (Sabin) is the only cause of polio in the United States these days.

Our "THANKS'' to Irving Grace for remembering us in his Will. Although he never attended a support group meeting, Irving was a staunch supporter of the group. He was one of the first members back in 1993.

Last year one of our speakers was Scott Anderson of Exceptional Equestrians which is a program wherein the disabled are taught and helped to ride horses. This has been found to be a very useful therapy for many. They are asking for our assistance now in the following way:- Exceptional Equestrians, Horses for the Handicapped, is having its third annual benefit show "Battle of the Barns" at the Silver Sands Covered Arena on Hwy 415 in Daytona (near the Cabbage Patch) on July 11 and 12 this year. They need items to be donated for their silent auction, it would be best if they were horse related, but they do not have to be. You will be supplied with a cash receipt for donations. Also needed are CLASS SPONSORS, which will then be printed into the program and announced at the show. A sponsorship is $20.00 and the check should be made payable to "Exceptional Equestrians" and sent to them at 90 Greens Dairy Road, DeLand, FL 32720. If more information is needed either about the show or the program, please call either Scott or Julie at 904 738-5075.

Editor's Note:- "Battle of the Barns" is competition with other stables working with the disabled. This is really a very worthwhile organization. They do fantastic work with children.


The following article was written by one of our adventurous members.

by Sally Fradkin

Our Israeli guide told us we were walking beneath the very spot where the Temple had stood. For me, the thrill of reliving Jerusalem's history was overshadowed by my aching legs and the tunnel that seemed to stretch on endlessly under the Old City. Before we reached our van, I was at the point of exhaustion. Neither the guide nor my fellow travelers had the slightest idea what it was like for me, as a polio survivor, to keep up with them. It didn't have to be that way. According to the Shalom-K Tours Ltd. brochure, "Israelis say 'no one belongs here more than you' and that phrase includes those who have problems getting around."

Shalom-K is one of the tours designed especially for the physically challenged. Blue Skies Exploration and Adventure Program is another. Both tours make use of El Al Airline's early check-in service for people with disabilities. Once in Israel, Ben Gurion Airport provides special assistance and wheelchairs on request. In Jerusalem, wheelchairs, canes and walkers can be rented from The Yad Sarah Institute. Also, MATAV, a non-profit organization offers accessibility information on resorts and attractions. Although some sights are inaccessible, it's possible to tour the Old City of Jerusalem and visit the Temple Mount and the Western Wall.

Post-Polio Syndrome made it difficult for me to climb Jerusalem's stone steps, but there is a tour through the Jewish Quarter where the stones have been specially chiselled to allow wheelchair passage. From the Mount of Olives, I saw the Dome of the Rock shining in the sun and I made the acquaintance of a camel at the Jericho visitor's center. As a physically challenged person, some things were difficult for me, but as a polio survivor, the possibilities were endless.

For information on Shalom-K Tours Ltd., contact Dale Sherwood, Holy Land Consultant at 1-800-465-1019, 500 Sheppard Ave. E. (Ste 206), North York, Ontario M2N 6H7. Blue Skies is sponsored through The Israel Programs Foundation, 1-800-826-4525, 1098 South Milwaukee Ave. (Ste 304), Wheeling, IL 60090. Information can be obtained from their web site (Web site address no longer exists - 15th August 2000). In Jerusalem the address for the Yad Sarah Institute is 43 Ha-Nevin St., P.O. Box 6992, Jerusalem, 91609. MATAV is located at 130 Dizengoff St.

Editor's Note:- Thank you Sally - Anyone else who has been on a trip and would like to send us an article PLEASE do so.


Reprinted from the Quarterly Newsletter of I.P.S.A.'s Branching Out, June/July/August 1998, Volume 1 - Number 3 and the Evansville Post-Polio Support Group

Advice for People with Post-Polio or Other Neuromuscular Disorders

by Augusta Alba, M.D. and Alice Nolan, R.N., New York University Medical Center, Dept of Rehabilitation Medicine, Goldwater Memorial Hospital, Franklin D. Roosevelt Island, New York, NY

If you have had polio or suffer from other neuromuscular disorder and have weakness of the neck, upper trunk, or shoulders but are not on a respirator, you may want to evaluate your respiratory needs. Such a disorder may be polymyositis, muscular dystrophy, amyotropic lateral sclerosis, spinal muscle atrophy or spinal cord injury. As you grow older, your respiratory reserves will diminish. A potentially serious problem may develop whereby carbon dioxide is retained and oxygen is decreased in your bloodstream. These changes may be obvious but in most cases they are subtle. You can easily recognize weakness·if you cannot pick your head up off the bed, raise your arms above your shoulders, turn over in bed by yourself, come to a sitting position or sit independently without a back support. However, it is difficult to recognize when the muscles of respiration (the muscles and rib cage that expand and contract your lungs) are not working adequately. When these muscles are impaired a restrictive respiratory problem results. This is different from obstructive pulmonary problems or disorders of the airways.

In the course of normal aging, our lungs and chest wall become less elastic. We do not breathe as deeply. Our vital capacity, the biggest breath we can take into our lungs and then push out, decreases by 30cc per year (1 oz). Our cough is not as vigorous. Aging and neuromuscular disorder produce more serious changes. These changes are maximized by conditions such as kyphoscoliosis and airway obstruction or chronic bronchitis.

Symptoms which may be associated with failing respiratory reserves are numerous and for the most part non-specific. This means that other medical problems can cause them as well. However, they do serve to alert you to a possible respiratory problem. These symptoms include feeling more tired or becoming exhausted from ordinary activities, and reducing usual activities because of fatigue. Anxiety, inability to fall asleep, restless sleep, awakening during the night with nightmares and awakening in the morning with a headache or slight confusion may occur. Brain functions are altered so depression, inability to concentrate, dizziness, sleepiness during the day and blurring of vision may be present. Vascular symptoms such as peripheral cyanosis or an abnormal sensitivity of the extremities to cold and the tendency to develop high blood pressure or a rapid heart beat may be caused by respiratory insufficiency. Breathlessness during activity including such a simple task as speaking may occur. Your voice may be lower than it had been. The breaths you take when you are awake may be very shallow and even more shailow when you are asleep. This is why early symptoms usually occur in sleep. Tranquilizers and sedatives will further depress your respiration and should not be taken especially at bedtime or during the night.

For many people, the first changes may be difficulty raising secretions and feeling congested with frequent colds. Difficulty raising secretions leads to a sealing off of lung tissue from the airways (atelectasis), or to infections of the lung tissue (pneumonis). The work of breathing becomes even harder and respiratory failure occurs more rapidly. With respiratory failure, the right side of the heart fails causing generalized edema and protein in the urine.

If you have any of the signs and symptoms described above, you should make an appointment to see your doctor. Your breathing can be evaluated by simple tests. One of these is measuring your vital capacity (the maximum amount of air that can be moved intd the lungs and then forcibly exhaled). If your vital capacity is reduced but is still above 50% of a predicted value for your age and sex, it is unlikely that your symptoms are related to your diminished breathing capacity except in three situations; marked obesity, partial obstruction of the throat during the night in deep, and the presence of an intrinsic lung disease such as an old tuberculosis or emphysema. If your doctor considers it necessary, he will refer you to a pulmonary specialist.

The pulmonary specialist will do screening pulmonary function tests, more comprehensive pulmonary function tests if he finds them necessary, and arterial blood gases. He may not find it necessary for you to have a ventilator but may wish to follow you on a regular semiannual or annual basis, or to see you immediately if you develop an intercurrent respiratory infection. If he suggests mechanical respiratory support, you need not be alarmed. Such support is an insurance policy for your well-being.

The respirator will help you sign your lungs (stretching or range of motion). It will help you to cough, speak and even regain energy that had to be funneled into the increased work that you expended in breathing prior to the use of the respirator. For the most part, the respirators used today are small portable units that operate on either battery or wall current. They are silent, inconspicuous, and are used with a mouthpiece both day and night, unless the person has a weakness of the throat. In selected cases, respirators including the iron lung, rocking bed and chestpiece, which provide a person with expiration and inspiration are still in use. Some people prefer a special body respirator called the pneumobelt especially when they are sitting. This is an inflatable bladder held against the abdomen in a non-elastic corset and cycled with the portable ventilator which mimics the abdominal muscles. If the mouth and throat are weak, a tracheostomy can be considered and the ventilator is connected to a tracheostomy tube. With appropriate follow-up and mechanical ventilation you will increase your sense of well-being and longevity.


This came to me through the Internet - I think it's worth reprinting in our newsletter and something we should all think about...

People DO Care

Right now...

Somebody is thinking of you.

Somebody is caring about you.

Somebody misses you.

Somebody wants to talk with you.

Somebody wants to be with you.

Somebody hopes you aren't in trouble.

Somebody is thankful for the support you have provided.

Somebody wants to hold your hand.

Somebody is praying for you.

Somebody hopes everything turns out all right.

Somebody wants you to be happy.

Somebody wants you to find him or her.

Somebody is celebrating your successes.

Somebody wants to give you a gift.

Somebody thinks that you ARE a gift.

Somebody hopes you're not too cold, or too hot.

Somebody wants to hug you.

Somebody loves you.

Somebody admires your strength.

Somebody is thinking of you and smiling.

Somebody is thinking of your smile.

Somebody wants to be your shoulder to cry on.

Somebody wants to go out with you and have a lot of fun.

Somebody thinks the world of you.

Somebody wants to kiss you.

Somebody wants to protect you.

Somebody would do anything for you.

Somebody wants to be forgiven.

Somebody is grateful for your forgiveness.

Somebody wants to laugh with you all night long about old times.

Somebody is waiting to use new times to make more memories.

Somebody remembers you fondly and wishes that you were there.

Somebody is praising God for you.

Somebody has you in mind while they wish upon a star.

Somebody values your advice.

Somebody wants to tell you how much they care.

Somebody wants to stay up all night watching old movies with you.

Somebody thinks they shared a past life with you. "Hmmm... I dunno about that."

Somebody wants to share their dreams with you.

Somebody wants to hold you in their arms.

Somebody treasurers your spirit.

Somebody wishes they could suspend time.

Somebody praises God for your friendship and love.

Somebody can't wait to see you.

Somebody wishes that things didn't have to change.

Somebody loves you for who you are.

Somebody loves the way you make them feel.

Somebody wants to be with you.

Somebody is hoping they can grow old with you.

Somebody hopes that you know they care.

Editor's Note:- I hope that there are a lot of "somebodies" out there thinking about you and maybe some will think about me. I know that I think about a lot of "somebodies" an awful lot of the time. So remember, "People DO Care"...


Reprinted from Well Aware, Memorial Health Systems, Spring 1998

a deadly threat to Floridians

by Marsha Knight

Ancient Egyptians traveled to Heliopolis, where they worshiped at the temple of Ra, the sun god. Today's sun-worshipers grease up and head for the beaches, where they lie prostrate for hours, soaking up sun rays and developing a "healthy" tan.

Unfortunately for them, there's no such thing as a healthy tan, says Palm coast dermatologist Mark Cheiken, D.O. Tanned skin is damaged skin, resulting from long term overexposure to sunlight, the world's most ubiquitous carcinogen.

Skin cancer has reached epidemic proportions in the United States, afflicting one of every six Americans. This year, the American Cancer Society predicts that 1 million Americans will be diagnosed with skin cancer, and 9,200 will die from it. The vast majority will die from malignant melanoma, the most serious and deadly form of skin cancer.

Florida is near the top of the list in melanoma incidence, expecting some 2,900 new cases this year. Only California, with 4,500 expected cases, sees more melanoma.

Every time we go outside, we expose ourselves to damaging ultraviolet rays. We're exposed in varying temperatures in all kinds of weather in any season, winter as well as summer. Although the sun's rays are the most intense during the summer months, you can risk getting sunburned any time your skin is exposed to the sun for prolonged periods. This exposure adds up over time because your skin retains all the damage it has accumulated over the years. Each sunburn you receive increases your risk of developing skin cancer later in life.

It's only been the last 40 years that the desire for a "great tan" has driven millions to beaches, pools and backyards. Suntans have become a status symbol -- an indication that a person has the money and leisure time to visit exotic places and lie in the sun.

"Protect yourself," Dr. Cheiken urges, "Since it's known that sun exposure is a problem, we recommend avoidance or caution. And always use a sunscreen."

Because of the intensity of the Florida sun and our outdoor lifestyles, Floridians have a larger percentage of skin cancer occurrences than those who live up north. The closer you are to the equator, the less time in the sun it takes to get burned. That's because the sun's rays travel more quickly through the ozone layer and hit the earth at a smaller angle.

Yet another danger looms in the future: The depletion of the ozone layer, which blocks most of the sun's ultraviolet radiation, will cause skin-cancer statistics to rise. According to the U.S. Environmental Protection Agency, basal cell and squamous cell carcinoma (the less lethal and more common forms of skin cancer) will increase from 1 to 5 percent for each 1 percent depletion of the ozone layer. The worse news is that by the year 2000, one of every 75 Americans will be diagnosed with malignant rnelanoma.

The more sun exposure you get and the longer you live, the greater your risk of developing skin cancer.

"Carcinomas tend to appear most frequently in sun-exposed areas such as the face, neck, upper back and arms, especially that arm that hangs out of the car window," Dr. Cheiken notes, adding that carcinomas are becoming more common on the legs. "Women's legs have always been more commonly at risk than men's because it's more acceptable for women to wear shorts and skirts. As we become a more casual, less formal society, we're seeing more men with skin cancers on the legs because they're sunning and wearing shorts to play sports.

Risk Factors

According to the American Cancer Society, risk factors for skin cancer include:

Incidence rates are about 20 times higher among whites than African-Americans.

Basal Cell Carcinoma

The most common type of skin cancer, basal cell develops slowly, rarely spreading to the rest of the body. It's often characterized by a sore that won't heal and may have a pearly, translucent appearance. If diagnosed and treated promptly, basal cell carcinoma is highly curable.

"Even though deaths from this cancer are extremely rare, early treatment is critical," Dr. Cheiken cautions. "Advanced cases may mean removing very large areas of the patient's nose, face or ears."

Both basal cell and squamous cell carcinomas are directly related to excessive sun exposure.

Squamous Cell Carcinoma

Squamous cell carcinomas are much more dangerous and aggressive than basal cell carcinomas. Left untreated, they can spread quickly and even invade the body.

They generally look like a wart with a crusted appearance and are likely to bleed.

Like basal cell, squamous cell carcinomas are treatable and can be removed with minor surgery in a doctor's office, if caught early.

Malignant Melanoma

"In most case studies, researchers have not found an absolute direct link to sunlight as a cause of this cancer," Dr. Cheiken says.

"However, there is data suggesting that the sun has something to do with melanoma. For instance more people in Australia and Florida have melanoma than do people in Alaska, so we know there is some link to the sun in susceptible populations."

Although melanomas can occur anywhere on the body, most are found in sun-exposed areas, especially the faces and backs of both men and women, the back of women's legs, and the chests of men.

Melanomas often start as small, mole-like growths that increase in size and change color. According to the American Cancer, a simple ABCD rule outlines the warning signs of melanoma:

A is for asymmetry. One-half of the mole doesn't match the other half.
B is for border irregularity. The edges are ragged, notched or blurred.
C is for color variation. The pigmentation is not uniform or is intensely black.
D is for diameter greater than 6 milimeters. Any sudden or progressive increase in size should be of particular concern.

It's also important to note that many melanomas bleed and become crusty.

Survival rates for early-stage melanomas approach 95 percent. Unfortunately, melanomas spread rapidly and once under the skin, the chances for survival plummet.

"It's important that we catch melanoma early," Dr. Cheiken emphasizes. "We then must excise them completely and follow up closely with the person. One of the problems with melanoma is that once it spreads, there are no medicines that can cure it or help prolong life. This is an area in which research is improving, but it's still not curable."

Since 1973, the incidence of melanoma has increased about 4 percent each year from 5.7 cases per 100,000 in 1973 to 12.5 in 1994. The numbers are rising in all age groups, with the greatest increase in men over 65. Before age 40, more cases occur in men than in women. Although this is one of the more common cancers diagnosed among younger adults, 68 percent of occurrences are in persons over 45.


Besides skin cancer, there is also sun damage and pre-cancers.

"The cases that are treated most in my office are actinic keratoses, or pre-cancers," Dr. Cheiken noted. "These are early changes of the skin that may develop into squamous cell skin cancers. Frequently, we can treat these with creams that may cause significant redness and irritation, but will reverse the process by scaling off those pre-cancerous growths and allow normal skin to grow underneath. Another process we can do in the office very easily is what we call freezing them with liquid nitrogen. This causes·a similar process, destroying the area where the atypical cells are."

Treating Skin Cancer

Basal cell and squamous cell carcinomas can be treated with:

"Melanomas must be surgically removed, taking wide margins around the growth to make sure it's completely gone," Dr. Cheiken noted. "Advanced cases may also be treated with radiation therapy."

Preventing Skin Cancer

Dr. Cheiken makes the following recommendations concerning the prevention of skin cancer.

Mark Cheiken, D.O., is a dermatologist and cosmetic surgeon serving on the medical staffs of Memorial Hospital - Ormond Beach, FIagler and West Volusia. His offices are at 33 Old Kings Road North, Suite 3, Palm Coast (phone: 904/446-4466); and 750 W. Plymouth Ave., DeLand (phone: 904/738-8000).

Editor's Note:- It's really funny -- I grew up in Brighten Beach, Brooklyn, New York. and spent all my summers on the beach from early morning to late afternoon and never used sun protection. We were never warned of the possibilities of skin cancer. In fact, I worked at the Brighton Beach Baths, the local beach club, that was open 10 months of the year (closed only January and February) - I remember seeing many of the beach patrons with skin like leather because they were constantly in the sun, but no one ever even thought about skin cancer. Oh, well, live and learn...


More on Dysphagia

In our last newsletter we had an article on Dysphagia by Lisa Alien of Columbia Outpatient/Rehab CORF. Lisa had made a presentation to our support group earlier in the year. We received a letter from Taunia Nixon Hetz, from Halifax Medical Center praising the article and giving us information of the dysphagia therapy services available at Halifax Medical Center and Bert Fish Medical Center. Below you can find a copy of Ms. Hetz' letter along with an editorial article she sent us on "Postpolio Dysphagia" by David W. Buchholz, MD, of The Johns Hopkins Hospital, Baltimore, Maryland, USA.

The original printed version of this newsletter contained a photocopy of the letter from Halifax Medical Center signed by Taunia Nixon Hetz. This web version contains a complete transcription of the text. LincsPPN Web Administration.

HALIFAX Medical Center

May 25, 1998

Barbara Goldstein,
Florida East Coast Post Polio Support·Group
12 Eclipse Trail
Ormond Beach, FL 32174

Dear Ms. Goldstein:

I recently read the excellent article on dysphagia by Lisa Allen in the May/June 1998 issue of the Florida East Cost Post Polio Support Group. I wanted to inform your support group members of the dysphagia therapy services that are available at Halifax Medical Center and Bert Fish Medical Center. Our team of certified and state licensed speech pathologists provide dysphagia evaluations and treatment on an inpatient and outpatient basis. Evaluation techniques include clinical assessment and modified barium swallow procedure. A modified barium swallow is completed in the x-ray department' utilizing fluoroscopy (a moving x-ray picture) that allows the food and liquid to be viewed as it passes through the mouth and throat. These techniques allow our therapists to develop a comprehensive treatment approach that maximizes the potential and function of a person's swallow.

Difficulty swallowing can be a big safety issue. Risk of malnutrition or dehydration are of concern in addition to the possibility of food going into the lungs secondary to the airway not closing properly. If an individual in your group is experiencing difficulty swallowing, they should contact their physician immediately. A physician then needs to write an order for speech evaluation and treatment of dysphagia. Our staff is available to answer any questions should you or your support group members have regarding swallowing difficulties by calling 254-4001. I have enclosed an article that was published recently in a journal that is dedicated to swallowing disorders. Please feel free to call with any questions or additional information that you should need.


Taunia Nixon Hetz, MS, CCC/SLP


303 North Clyde Morris Boulevard - Post Office Box 2830 - Daytona Beach, Florida 32120-2830 - (904) 254-4000


Postpolio Dysphagia
David W. Buchholz, MD
The John Hopkins Hospital, Baltimore, Maryland, USA

Dysphagia 9:99-100 (1994)

Address offprint requests to: David W. Buchholz, M.D., Department of Neurology, The John Hopkins Hospital, Baltimore, MD 21287-0876, USA

The postpolio syndrome (PPS), like any syndrome, is a constellation of symptoms and signs with multiple potential causes. It is not a specific disease. In the case of PPS. the symptoms and signs include progressive muscle wasting and weakness, limb pain, and/or fatigue, occurring one or more decades after maximal recovery from acute paralytic poliomyelitis (APP) [1]. Now that several decades have passed since the last epidemic of APP in the 1950s, the magnitude of PPS is large among the 250,000 survivors of APP in the United States alone [2].

Over a century ago PPS was recognized [3], but within the past decade it has received much attention in both the medical literature and lay press, some of which has been misleading and unnecessarily alarming [4]. There has been much confusion about the incidence, causes, and effects of PPS, and the term "PPS" itself has been misunderstood and misused.

The incidence of PPS among an unselected population of 50 APP survivors was found by Windebank et al. [5] to be 64%, although only 18% of these individuals had suffered life-style or activity changes as a result. The causes of PPS are many and include orthopedic complications of chronic residual weakness, entrapment neuropathies, spinal nerve root and spinal cord compression, concurrent medical illness. medication side effects, and psychiatric disorders, especially depression. These conditions should be diligently sought and treated in every patient with complaints of PPS.

Another possible cause of PPS is progressive postpolio muscular atrophy (PPMA), as described by Dalakas et al [6]. To understand PPMA, it is necessary to understand both the acute illness and the recovery phase of APP. In the acute illness, bulbar and spinal lower motor neurons are destroyed by the polio virus, and as a result, the muscle fibers supplied by those neurons become denervated. Recovery from APP involves the sprouting of new axons by the surviving motor neurons in order to reinnervate the denervated muscle fibers. These surviving motor neurons thereby develop abnormally large numbers of axons, the metabolic maintenance of which becomes exhausting to the neurons after decades of overwork. At some point, the axons cannot all be maintained, and their terminals gradually disintegrate, causing progressive muscle fiber loss, muscle atrophy, and weakness. The decline in muscle strength is extremely slow, estimated to occur at an average of 1% per year [6].

Other theories to account for PPMA have been suggested but have not been widely accepted, including the possibility of persistent polio virus infection [7,8]. There is no specific diagnostic test for PPMA (i.e., it is a diagnosis of exclusion), and there is no specific treatment for it. Both of these factors underscore the importance of searching for other, treatable causes of PPS. It is generally believed that PPMA can be aggravated by overusage of the affected muscles [9], and patients should be advised to avoid fatiguing exertion. Also, patients with a diagnosis of PPMA (after thorough investigation for other causes of PPS) should be reassured that their condition is not likely to rapidly or substantially deteriorate. This reassurance may be the most valuable therapy for PPMA, as those afflicted are understandably predisposed to expect the worst, often having experienced abrupt, profound paralysis in the past and fearing a relapse akin to APP.

A point of controversy has been whether or not PPMA can cause progressive pharyngeal weakness and dysphagia and, if so, to what extent this should be a concern to polio survivors. Oropharyngeal dysphagia occurs in 10%-15% of patients with APP [10], and residual dysphagia has been reported by approximately 20% of patients long after recovery [11,12]. Many of these individuais perceive their dysphagia to be progressive. The: issue of whether or not progressive pharyngeal weakness due to PPMA is a cause of progressive dysphagia symptoms can be best resolved by serial videofleuroscopy of swallowing. Previously, Sonies and Dalakas [13] reported evidence of progressive pharyngeal weakness in four postpolio patients studied longitudinally, but these data and their interpretation have been questioned by Buchholz and Jones [14].

It is in this regard that the data of Ivanyi et al. [15] reported in this issue of Dysphagia, are most helpful, providing evidence of no objective deterioration in 6 of 7 patients with PPMA who had subjectively progressive oropharyngeal dysphagia and were studied by serial videofluoroscopy at a mean interval of 18 months. The "very slight changes" in pharyngeal swallowing function in the 7th patient can be reasonably interpreted as within normal limits of interstudy variability.

It may be argued that the patients studied by Ivanyi et al. were relatively mildly affected (none had sought medical attention for dysphagia) and that evaluation of more severely and progressively symptomatic patients with postpolio dysphagia would yield objective evidence of progressive pharyngeal weakness due to PPMA. Or, perhaps videofluoroscopy is not adequately sensitive to detect slowly progressive pharyngeal weakness due to PPMA, at least over a mean interval of only 18 months, even though it is the best currently available method of evaluation. Further longitudinal studies are needed, ideally involving larger numbers of patients with progressive postpolio dysphagia symptoms and longer intervals of follow-up.

The discrepancy between the patients' perception of progressive dysphagia and the lack of videofluoroscopic confirmation is curious but is consistent with similar discrepancies between progressive subjective complaints and nonprogressive objective findings in the limbs, as reported by Windebank in other cases of PPMA [16]. Perhaps in some cases the perception of progressive problems has been fostered by exaggerated concern about the rapidity and severity of PPMA. The report by Ivanyi et al. offers further justification for therapeutic reassurance of individuals with PPMA.

That is not to say that patients with postpolio dysphagia should not be evaluated or treated other than with reassurance. Every patient with bothersome postpolio dysphagia should be studied clinically and videofluoroscopically, especially if symptoms are recently progressive. Studies may reveal treatable structural or esophageal pathology [17,18], and swallowing therapy may be indicated to promote ease and safety of swallowing in the face of postpolio pharyngeal weakness [19].


  1. Halstead LS, Wiechers DO (eds.): Late Effects of Poliomyelitis. Miami: Symposia Foundation, 1985
  2. U.S. Department of Health and Human Services. Prevalence of selected impairments, United States--1977. Vital Health Statistics [10] 134:15 (Table P), 1981
  3. Raymond M: Paralysie essentielle de l'enfance, atrophie musculaire consecutive. Comptes Rendus Soc Biol 27:158-165, 1875
  4. Clark M, Witherspoon D: A new scare for polio victims. Newsweek, 23:83, 1984
  5. Windebank AJ, Litchy WJ, Daube JR, Kurland LT, Codd MB, Iverson R: Late effects of paralytic poliomyelitis in Olmsted County, Minnesota. Neurology 41:501-507, 1991
  6. Dalakas MC, Elder G, Hallett M, Ravits J, Baker M, Papadopoulos N, Albrecht P, Sever J: A long-term follow-up study of patients with post-poliomyelitis neuromuscular symptoms. N Engl J Med 314:959-963, 1986
  7. Sharief MK, Hentges R, Ciardi M: Intrathecal immune response in patients with the post-polio syndrome. N Engl J Med 325:749-755, 1991
  8. Melchers W, de Visser M, Jongen P, van Loon A, Nibbeling R, Oostvogel P, Willemse D, Galama J: The postpolio syndrome: no evidence for poliovirus persistence. Ann Neurol 32:728-732, 1992
  9. Klingman J, Chui H, Corgiat M, Perry J: Functional recovery: a major risk factor for the development of postpoliomyelitis muscular atrophy. Arch Neurol 45:645-657, 1988
  10. Baker AB, Matzke HA, Brown JR: Poliomyelitis III. Bulbar poliomyelitis: a study of medullary function. Arch Neural Psychiatry 63:257, 1950
  11. Halstead LS, Wiechers DO, Rossi CD: Late effects of poliomyelitis: a national survey. In: Halstead LS, Wiechers DO (eds.): Late Effects of Poliomyelitis. Miami: Symposia Foundation, 1985
  12. Speier JL, Owen RR, Knapp M, Canine JK: Occurrence of post-polio sequelae in an epidemic population. In: Halstead LS, Wiechers DO (eds.): Late Effects of Poliomyelitis. Miami: Symposia Foundation, 1985
  13. Sonies BC, Dalakas MC: Dysphagia in patients with the postpolio syndrome. N Engl J Med 324:1162-1167, 1991
  14. Buchholz DW, Jones B: Post-polio dysphagia: alarm or caution? J Orthopedics 14:1303-1305, 1991
  15. Ivanyi B, Phoa SSKS, de Visser M: Dysphagia in post-polio patients: a videofluorographic follow-up study. Dysphagia 9:96-98,1994
  16. Marwick C: Post-polio syndrome may not be progressive. JAMA 267:479, 1992
  17. Buchholz DW, Marsh BR: Multifactorial dysphagia: looking for a second, treatable cause. Dysphagia 1:88-90, 1986
  18. Jones B, Buchholz DW, Ravich WJ, Donner MW: Swallowing dysfunction in the postpolio syndrome: a cinefluorographic study, AJR 158:283-286, 1992
  19. Silbergleit AK, Waring WP, Sullivan MJ,Maynard FM: Evaluation, treatment, and follow-up results of post-polio patients with dysphagia. Otolaryngal Head Neck Surg 104:333, 1991


Reprinted from USA Weekend, June 12-14, 1998

Long-term care coverage: Who needs it, and how to find it

As the U.S. population starts to swell with seniors, many people are asking whether they should buy long-term care insurance, either for themselves or for aging parents. Many younger people buy this coverage for their parents to protect their own inheritance, or to protect themselves in case they must eventually support their parents.

More than 120 insurers offer long-term care policies, with annual premiums from several hundred to several thousand dollars. Your best bet is to get quotes from at least three companies. Note: Long-term care makes the most sense for people with a net worth of $100,000 to $1.5 million. Those with less will exhaust their assets and qualify for Medicaid; those with more can fund their own care.

Shop for a policy with a three-year term, says Robert Davis, president of Long-Term Care Quote, an independent agency in Chandler, Ariz. Two reasons: Most people who turn out to need long-term care need it for 2½ years. And going this route gives you the option -- which many choose -- to transfer assets to qualify for Medicaid. Look for a daily benefit at least as large as the average daily nursing-home cost in your area and an elimination period (the time before payment kicks in) of 90 days. Most people can afford to pay for their own care for three months. And the price difference between a policy that kicks in on Day 90 and one that kicks in on Day One can be 30 percent. Finally, look for insurers rated A or better by Moody's and Standard & Poors.

If you want to get three quotes with just one call, Long-Term Care Quote (1-800-587-3279) will provide them gratis. The company will ask you for basic information on your age, health and location, then shop 15 top rated carriers on your behalf. You'll get details on three policies, including whether insurers have ever raised premiums. Not every top insurer is on Long-Term Care Quote's radar; several major players, including New York Life and Teacher's insurance, don't let independent agents sell their policies. Still, it's a good start.

Contributing Editor Jean Sherman Chatzhy, a Money magazine editor, wrote The Rich and Famous Money Book. She is seen on NBC's Today show and MSNBC.

Here's another little gem from the Internet that I think you'll like...

Second Grade:-

A teacher gave her class of second-graders a lesson on the magnet and what it does. The next day, in a written test, she included this question: "My name has six letters. The first is M. I pick up things. What am I?

When the test papers were turned in, the teacher was astonished to find that almost 50 percent of the students answered the question with the word "MOTHER".

Editor's Note:- I realize Mother's Day was last month, May 12th, I just found this on my e-mail and wanted to share it...


Reprinted from Polio Heroes of Tenn, June 1998

Summary of Presentation by Dr. Dawn Sanchez, PhD., to Polio Heroes of TN, April 25, 1998
TOPIC: Research on Post Polio Coping Done with Polio Survivors in Oklahoma

At the time of this presentation, Dr. Sanchez was a Clinical Psychologist with the Healing Connection in Nashville where she was the Associate Dir. She has attended all Polio Hero of TN support group meetings for the last year and worked with members of our group. We are sad to report that since this meeting she has moved to Seattle, Washington with Marrow Transplant Unit at VAMC, Seattle. We wish her the very best and will miss her great smile.


The age that you had Polio effects your overwhelming experience. Also, the impact of your family and community. The natural healing adaptations or maladaptation depends on resiliency, resource and support, plus type of experience.

Maladaptation to an overwhelming experience:

The most common reaction to trauma is depression and anxiety.

P.P. psychological aspects:

  1. Told symptoms were "all in your head" resulting in anger and distrust of the medical community.
  2. Etiololy and progression unknown, leading to anxiety and depression.
  3. Strive to appear non-disabled. More Polio survivors marry, have more education and higher employment rate than the normal population.
  4. Type A personality -- goal oriented, need to be in control, time pressured, hostility often expressed.

Dr. Sanchez outlined the normal coping skills for those who did not have Polio. 47 subjects completed her study out of 200. Average age was 54. They kept a daily diary, including health, demographics, stress frequency, cognitive appraisal, coping, and symptoms.

Conclusions and Findings:

  1. Stress and Coping Model (of non Polios) did not hold for PP survivors.
  2. Somatization: Predicted by objective physical symptoms, not subjective psychological distress (this made sense in PP patients). This should be removed in evaluating PP, since polio patients have, indeed, very real physical problems. Often this is interpreted as psychological distress, but in Polio, this does not apply.
  3. Depression: Predicted by perception of severity of daily life stressors, relatively more emotion-focused coping strategies, and being male. (The higher stress, the more depression. If you try to cope emotionally, that predicts depression. More common in males with PPS. When males have been in control most of their lives, and there has to be some role changes, that leads to depression.)
  4. Anxiety and hostility: Predicted by perception of daily life stressors. These conclusions did not matter if the individual perceived the stressful event as controllable or non-controllable.

Treatment Implications:

  1. Understand the impact of initial Polio bout and subsequent overwhelming experience of PPS.
  2. Work on Perception of daily stressful activities -- employ problems -- focused coping strategies. (Cognitive behavior techniques -- employ problem coping rather than emotional coping strategies.)
  3. Encourage moderate involvement in activist roles, grandparent roles or ADA.

For Post Polio there is a whole different array of problems and coping because of the initial Polio, that others do not have.


Reprinted from the Volusia/Flagler CFIDS/FMS Support Group Newsletter, June 1998


Most of us with CFIDS/ and/or FMS experience memory disturbances to a certain degree. Sleep disruption, agonizing pain, or perhaps a brain chemistry abnormality interfere with short-term memory. Following are a few suggestions for coping with this exasperating problem.

  1. Pay Attention: As obvious as it may seem, this is often ignored. Much of the time, we operate on "automatic pilot" and don't consciously try to remember. We assume that memory works like a tape recorder. But new things just won't imprint themselves. Memory isn't automatic. If we want to retain information, we need to pay attention to it and relate it to what we already know. Often we forget things because we were thinking about what we were going to do next or were distracted. It helps to say things out loud: "I need to pick Steven from the library at 4:00,'' or, "I will stop for a gallon of milk on the way home."
  2. Write it Down: Keeping lists, calendars, and diaries is essential. Not only do they provide a written record, but the very act of writing down the information helps embed it into the brain. Always have paper and pencil by the phone. Before making a call, make notes of all the points you want to cover or the questions you want to ask. This is especially true of doctor calls.
  3. Give it Meaning: To help yourself remember mundane information, try using acronyms. When we got the license plate 7GG-SH for our truck, our teenage son, said, "Hmm, Seven Gorgeous Girls - Shhh!" We laughed at him, but ever since then we can remember the number. Vernon H. Mark, MD., a neurosurgeon, in his book Brain Power, suggests incorporating information into a song, because melody is generated in the right hemisphere of the brain and words originate in the left. Thus, "the whole brain is focused for optimum retrieval."
  4. Practice Remembering: Dr.RobertA. Bjork, professor of psychology at UCLA says that it helps to retrieve information several times before you actually need it. If you park your car in section 5F, repeat "5F, 5F, 5F" several times to yourself, out loud if possible, when you first park and again after twenty minutes or so, then every hour until you need to find the car.
  5. Visualize it: To help recall names, Dr. Thomas Crook, founder of the Memory Assessment Clinic in Bethesda, Maryland, suggests that you focus on a distinctive facial feature, and exaggerate it. If you meet a redheaded person, you might imagine the hair on fire. Then repeat the name aloud, "It's nice to meet you, Barbara." In your mind link the name with the image (Barbara-barber) or with a famous person. Make the connection between the exaggerated image and the name image -- Barbara's red hair is on fire and the barber is putting it out. Although, the process probably will·seem silly and time consuming, it will get easier with practice.
  6. Relax: When you draw a blank, racing your brain in an effort to force yourself to remember only makes the situation worse.
  7. Keep Fit: All vitamins and minerals are important for brain functions, but Dr. Vernon H. Mark states that the B-complex vitamins are especially relevant to mental health. Research at the U. of Texas indicates that adequate intake of iron and zinc seemed to improve memory in premenopausal women who were deficient in them. Physical exercise has been shown to increase blood flow to the brain, making you more alert, and help maintain memory.
  8. Exercise Your Mind: The key to fighting a decline in memory is challenging intellectual activity, according to Joseph Mendels, MD., Medical Director of the Memory Institute in Philadelphia. Working crossword puzzles, learning computer programs, taking up a musical instrument, or even playing games to keep the mind active and boost memory function. Dr. Crook suggests this specific exercise: whenever in an unfamiliar place (a doctor's office, a store, a friend's house, etc.) mentally note the placement of ten objects. After leaving, try to picture the room and the position of each item.

If you, like most of us with CFIDS/FMS are having problems with your memory, try some of these techniques. The more you practice using them, the easier it will become. As it becomes easier and you start to remember more, your confidence in your inemory will improve, and that in itself will provide another important step in fostering more improvement. George Rebok, Ph.D., of Johns Hopkins University in Baltimore says, "Confidence that you can remember pays a great role in actually being able to do so."

(Copied in part from WTLC NEWS UPDATE)

Editor's Note:- It was my thought that many of the problems that the Chronic Fatigue and Fibromyalgia people are going through are very similar to what we (polio survivors) are experiencing -- short term memory loss, pain, sleeping problems. What helps one group can, very possibly, help another. In reading this article, everything seemed very plausible for the problems postpolios experience, so into the newsletter it went.

Good House keeping Magazine annually gives out 10 Awards to Women in Government. In the July 1998 issue of Good Housekeeping, we noticed that one of these Awards was given to Susan Daniels, Deputy Commissioner for Disability and Income Security, U.S. Social Security Administration. Ms. Daniels story is as follows:

Daniels is a polio survivor who's made it her life's work to help people with disabilities -and she's never let government red tape stand in her way. A program she developed, called A Home of Your Own, has helped more than 230 disabled people in 22 states buy their own homes, while offering a variety of support services. "I think it's so important for people to live independently; I wanted to make that happen," Daniels notes. Ms. Daniels received $2,500 - made possible through the generosity of the Ford Foundation.

Editor's Note:- Our HATS off to Ms. Daniels. No, the article did not state where we could reach her. If anyone does know, please let me know so I can pass on the information to anyone that requests it.


Reprinted from Rancho Los Amigos Post-Polio Spt Grp Newsletter, May 1998.

Control Your Destiny II
with Dr. Jacquelin Perry
Reported by Mary Clarke Atwood

World renowned polio specialist Dr. Jacquelin Perry was the featured speaker at the Rancho Los Amigos Post-Polio Support Group meeting on December 6, 1997.

Since retiring after 40 years of dedicated, full time county service, Dr. Perry continues her work at Rancho but in a new capacity -as a volunteer. Because she continues to believe that post-polio syndrome is undertreated by the general medical community, the Rancho Post-Polio Clinic remains open and she continues as chief of Post-Polio Services.

Dr. Perry also volunteers as medical consultant for the Rancho Pathokinesiology Lab. When the opportunity arises for her to speak at worldwide conferences or lectures, Dr. Perry uses the occasion to educate other medical professionals about PPS. We appreciate this annual opportunity for her to educate us, the polio survivors.

As time passes it is becoming more and more clear to Dr. Perry that we as polio survivors have more control over our future than anyone else. Therefore she chose to repeat last year's title for this talk, "Control Your Destiny II".

This presentation was based upon questions submitted to Dr. Perry. The following report focuses on her response to one question concerning the natural progression of post-polio syndrome. In succeeding issues we will present Dr. Perry's answers to the other questions from this meeting.

Question: What is the natural progression of post-polio syndrome? Will a person return to the same degree of paralysis that was experienced at onset?

Answer: When focusing on the natural progression of PPS it is important to understand that muscle function depends on three systems:

  1. control from the brain
  2. sensation from the periphery
  3. the lower motor system from the spinal nerve cell (anterior horn cell) down to the muscle.

The third system is the most important for people with PPS because if you lose the nerve, you lose the muscle. We talk about muscle weakness, but polio is actually a nerve disease that damaged or killed anterior horn cells. This makes a lot of difference in terms of exercise, etc.

Acute Polio

During the acute phase of polio some spinal nerve cells died while others were injured but later recovered. Some people had paralysis -- others did not. The effects were like spatter paint. If you had a lot of "paint" you had a lot of damage, while others were just touched lightly. But all survivors were left with a damaged neuro-muscular system.


Recovery from polio entailed all three methods of recovering function:

  1. Neuro recovery --
    Between 12% - 91% of the nerve cells that were injured -- not killed -- by the polio virus recovered
  2. Axon sprouting --
    New branches of the remaining nerve cells were sent out to adopt the orphaned muscle fibers. The result was that each nerve was then doing 50% more work or even up to four times as much as normal.
  3. Hypertrophy --
    The muscles enlarged themselves up to about 400% so they could function.

It is not known how much a survivor's recovery was due to spontaneous nerve generation, how much could be credited to patching by the axon sprouting, and what amount was due to hypertrophy. Upon recovery polio survivors had a random disability in regard to the amount of paralysis. The amount of muscle weakness a person had was pure chance; it depended upon the amount of polio virus a person had and where it went. Some survivors remained paralyzed, while others looked or felt normal although they were not.


During the 1940s Bodian traced the polio virus in the motor nerve cells of monkeys. He found that polio, a systemic disease, affect 95% of these cells by either injuring or destroying them.

Research confirms that there is some obvious weakness as a result of polio:

Dr. James Agre found that polio survivors with no current symptoms had only 80% of normal muscle strength.. Symptomatic survivors had 60% or less muscle strength compared to the normal group.

Following a four year study Grimby reported a normal 2% - 5% loss of muscle strength in asymptomatic polio survivors, but for symptomatic survivors this loss may be as high as 13%.

A study by Grimby confirms that weaker muscles work longer and twice as hard.

This research says that it is necessary to protect this overused muscle system. The muscles that are grade 3, 3+, and some 4s are getting all the exercise they can tolerate. In order to maintain this function these muscles must be protected from overuse.


For many, many years polio survivors have been working with a damaged neuromuscular system that keeps working harder than ever to meet normal demands. We need to appreciate the fact that each anterior horn cell innervates several hundred muscle fibers and the surviving horn cells have been doing 50% more work than normal. Plus it appears they don't like being overworked!

Because of this over-use of the neuromuscular system, new weakness is now developing. Survivors may develop new weakness not only in "polio" muscles but also in other muscles that did not seem to be involved during the acute phase.

Although the amount of weakness a polio survivor develops in later life depends upon the original involvement, age is also a factor. Anterior horn cells do not have infinite durability -- they begin aging at about 60 years of age. So polio patients aged 70 and up have a natural weakness just from age that needs to be appreciated and put in perspective also.


At least half of the 1.5 million people who had polio have post-polio syndrome. Nothing has been added, PPS is a loss of function. The problem is that a survivor's lifestyle now exceeds his physical ability.

Dr. Perry advises, "Don't push the system". She believes a polio survivor can control loss of function by controlling overuse of muscles. The way to do this is by making lifestyle changes, modifying activities, and pacing.

Polio survivors should know their own muscle strengths and plan accordingly. A study by Agre related to exhaustive fatigue confrms that:

So, it becomes necessary to make lifestyle modifications. Dr. Perry advises patients to:

  1. Figure out what you don't have to do.
  2. Get others to do the heavy work.
  3. Break up work periods with rest periods.
  4. Don't pride yourself on working harder.
  5. Pain is a sign of injury and overuse, so just don't let it happen.

Figure out what causes your pain and don't do it again.

How You Can Help Yourself

Dr. Perry's general activity guideline is that a polio survivor can do anything as long as it causes (1) NO PAIN and (2) NO FATIGUE THAT LASTS LONGER THAN 10 MINUTES. Survivors can control their destiny by avoiding overuse strain. But, she cautions: Polio survivors who overuse muscles will lose strength.

If you are experiencing new weakness, fatigue, or pain you can help yourself now by changing your lifestyle and pacing yourself


Reprinted from Post Polio Support Group of Orange County Newsletter, June 1998

Grace R. Young, MA, OTR

Fatigue and pain must be respected. Overuse to muscles is not always apparent while it is occurring. Muscle pain is a warning signal that the muscles have been overused. The damage accumulates over a period of time and may not become obvious until you lose the ability to do an activity which was previously possible.


Try to rest at least one hour during the day. If you work and resting at lunchtime is not possible, take a one-hour rest immediately after work. This will make your evening activities more productive and enjoyable.

Lie down to rest so your back doesn't have to support your body weight. Sitting takes 1/3 more energy than reclining. If you want to read, use an overhead book holder so your hand and arm muscles won't stay tense. You can listen to music, practice visualization, or meditate; the point is to allow all the muscles in your body to relax.


Have you had days when you felt so good that you took on an ambitious project and kept pushing yourself so you wouldn't lose momentum? Were you incapacitated for a few days after that? It is tempting to overdo on your good days. However, you'll be more productive overall if you plan your activities for a balanced lifestyle.

Prolonged activities such as cleaning house or gardening, can leave you exhausted for the rest of the day unless you break them up into short segments with rest breaks in between. Before starting an extended activity, decide how long you will work at it and allow a 15-minute rest break every 30 minutes. Use a kitchen timer to let you know when to stop working and when to start up again.

Alternate light and heavy tasks throughout the week. Split your ambitious projects into daily segments throughout the week, and stick to your plan no matter how good you feel on any particular day. Plan fewer activities for the days when evening activities are on the agenda.


You may have different levels of pain and fatigue at various times of the day. Activities which are simple to perform in the morning may be difficult later in the day, or vice versa. For example, if cooking supper in the late afternoon is too stressful, prepare most of it in the morning, to be reheated later.


The easiest sign is a feeling of fatigue while you are in the midst of the activity. This seems obvious but many of us do not pay attention to our body. If the level of fatigue is out of proportion to the level of activity, the activity may be too stressful even if your mind says it should not be.

If there is a change in the quality of movement. For example, you develop a tremor or "jerkiness" in your motions while performing the activity.

If there is a change in the quantity of movement; that is, decreased range of motion. For example, you can usually lift your arm to a certain height but that height lessens as you continue the activity.

If you start to use compensatory movements. For example, you "hunch" your shoulder in order to raise your arm, or you swing your leg out to the side instead of flexing at the hip.

Editor's Note:- Grace Young is a polio survivors herself, experiencing PPS problems. Having met her at several conferences, I can tell you she knows whereof she "speaks".

H-E-L-P. . .

I'm running out of ideas for presentations at our meetings. PLEASE call me if you have anyone that you feel would be a good speaker, let me know!!!! Thanks. Barbara



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