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

Newsletter Volume 5 No. 4
January /February 1998

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

- and -



* DUES FOR 1998
* Information regarding muscle weakness from taking NIACIN by Ruth Wyler-Plaut
* MONEY MATTERS by Steve Stelmach, CPA
* THE GOLDEN YEARS by Jack Briggs
* "LOVE and the CABBIE" by Art Buchwald
* Support Group Notices & Information

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


Sunday, January 18th - A Nutritionist
Sunday, February 15th - Michael Gunde, Assistant Drector, Braille and Talking Book Library, Daytona Beach, will discuss the latest rules and regulations of the ADA with us.
Sunday, March 15th - Any suggestions????

Our Holiday Luncheon was a huge success. We had a total of 54 people - we had guests from St. Petersburg, Tallahassee, Zephryhills, Cocoa, Paisley, Eustis and Orlando, as well as from Volusia and Flagler Counties. Our speaker, Dr. Gudni Thorsteinsson, director of the Jacksonville Mayo Clinic's Post-Polio Clinic, gave a most knowledgeable talk on pain and fatigue. Those of us who were at the Red Lobster were really glad that we braved the rain and wind it was a most worthwhile afternoon.

Our speaker for the January meeting will be a nutritionist. After all the indulging most of us will have done during the Thanksgiving, Christmas and NewYear festivities, let's find out how to get back in shape.


This Press Release was just received (12/1) from the Gazette International Networking Institute - Contact: Joan L. Headley, Telephone # 314/534-0475.


Pyridostigmine in PPS: No significant impact on quality of life, fatigue, isometric muscle strength

PRELIMINARY RESULTS OF THE MULTI-CENTER, placebo-controlled NAPPS (North American Post-Poliomyelitis Pyridostigmine Study) trial of pyridostigmine (Mestinon) in post-poliomyelitis syndrome (PPS) were presented on November 15 at the annual meeting of the American Academy of Physical Medicine and Rehabilitation (AAPM&R) in Atlanta by Daria A. Trojan, MD, Assistant Professor at the Montreal Neurological Institute and Hospital of McGill University in Quebec. Pyridostigmine was not found to provide significant benefits with respect to quality of life, fatigue, or isometric muscle strength compared with placebo, although a trend was noted towards increased strength in very weak muscles.

THE NAPPS STUDY WAS INITIATED BY THE PARTICIPATING INVESTIGATORS and received support from ICN Pharmaceuticals, the company that markets and distributes the medication (Mestinon is currently approved for the treatment of myasthenia gravis). One hundred and twenty-six (126) patients participated in the trial; 64 received pyridostigmine and 62 received a placebo. All patients completed the double-blinded study, a study where both the patients and the study personnel (investigators and evaluators) are unaware of which patient received the pyrido-stigmine or the placebo. During the six-month course of the study, 70.3 percent of patients on pyridostigmine and 72.6 percent of patients on placebo had at least eighty percent (80%) compliance with the medication.

IN THE MAIN DATA ANALYSIS, which included all patients in the trial, the study did not show a difference between pyridostigmine and placebo patients in terms of their health-related quality of life, fatigue (as measured by two fatigue scales), and most measures of isometric muscle strength. Similar results were noted for the subgroup of patients who were assessed as being compliant with the use of the medication. However, Dr. Trojan noted, there was a nonsignificant increase in strength in very weak muscles (1% to 25% of predicted normal strength) in pyridostigmine-treated patients of six (6) months of treatment. In general, the study medication was well tolerated: four (4) severe adverse events were observed during the trial, three (3) of which occurred in pyridostigmine-treated patients.

THESE RESULTS, which showed no statistically significant effect of pyridostigmine on the outcomes assessed, were unexpected by the investigators. Dr. Trojan commented that the results did not reflect the investigators' clinical impression that there appeared to be a clear benefit with the medication in at least some patients. It is possible that another study that utilizes different or more sensitive outcome measures (such as measures of muscular endurance, physical activity, or disease-specific quality of life) might yield different results, she noted. The open-trial phase of the NAPPS study is on-going, and further data analyses are in progress.

Editor's Note:- The final analysis as of now is that the preliminary results show no impact on the taking of Mestinon by those undergoing post-polio syndrome as of now.



God must have known there would be times
We'd need a word of cheer
Someone to praise a triumph
Or brush away a tear.
He must have known we'd need to share
The joy of "little things"
In order to appreciate
The happiness life brings.
I think He knew our troubled hearts
Would sometimes throb with pain
At trials and misfortunes
Or some goals we can't attain.
He knew we'd need companionship
And so God Answered the heart's great need

Editor's Note:- My friend Kay Sweeney from Alabama sent this through e-mail. I though it worthy of reprinting.


Reprinted from Southern Alberta Post Polio Support Society #7, Post Polio Echoes, May 1997; reprinted from (Mt. Diablo Post Polio Network) MDPPN NEWSLETTER, Volume 6 #01

The following article has been submitted by Drs. Susan and David O'Grady, Ph.D. as a summary of their talk and the discussion that ensued.


How does post polio syndrome affect survivors and their families emotionally and interpersonally? It was our hope that by talking about these things, you will be better able to understand yourself, what you want and need, why you feel what you feel, and how you can better understand your partner' s feelings.

Our focus was on communication. How polio survivors can better communicate to their partners and family what the polio experience is like for them, and so partners and family can communicate to the polio survivor what their own experience is like. We all know very well that in human interaction misunderstandings are common. We misread each other, assume things erroneously, fail to listen, and fail to put our thoughts into words.

Many things stand in the way of communication, but when we are successful and do communicate, we naturallv feel a great sense of relief at being understood, and this feels good. But more than just making us feel good, we now know, from the results of years of medical research, that expressing feelings and tending to your close personal relationships is good for your health. It helps those with cancer live longer, it diminishes the effects of heart disease, controls hypertension and strengthens the immune system.

The late effects of polio are threatening and upsetting because they change the things people can do and how they do them. Polio survivors who had learned to adjust to the impairments caused by their first illness often quite satisfactorily, are then decades later, unexpectedly faced with new deterioration in functioning. These changes are emotionally upsetting, affect self-image, challenge a person's idea of who he or she is, and push a person into new roles in relation to others, roles not necessarily wanted or sought.

Most importantly, you can't do what you used to do. Or, what used to be easy, you now have to work hard to do. Or, what you used to do independently, you now have to have help to do. Or, what you used to do without an adaptive device, can only be done with one. Or, what used to be comfortable to do, you now do only with significant pain. Or, what you used to accomplish in two hours now takes half a day and then you're too tired to do anything else.

In the initial stage of post-polio syndrome there is commonly a period of confusion; new symptoms may be dismissed, minimized, or attributed to something else. Once the true explanation is found, it is common to have a great deal of fear and anger: fear of possible progression of symptoms, fear of the unpredictable nature of the syndrome, and fear of how helpless you may become.

And there's anger at being forced to drastically and unexpectedly alter one's lifestyle. People ask, "Why me, or why us?" There is a feeling of being cheated, having already faced the effects of polio and have managed to live with it, now the polio tricked you, robbing you again, forcing more changes.

The old coping strategies of minimizing overachieving and over-compensating cannot be used in the same way as in the past. Because the physical condition has changed, denial and minimization can be hurtful because now more than ever you need to pay attention to your fatigue level or pain to avoid exhaustion and worsening the condition. It is a major change to let go of this refusal to give in, of pushing oneself to one's limit.

It is natural to feel a deep sense of loss - of one's identity and of abilities. You are forced to accept a new identity, perhaps one you don't like very much. For example, you may feel like a wet blanket who holds everyone back because you can't keep up on excursions, hiking, golf with your buddies. Perhaps, in the past you had no physical handicaps or disabilities, that was for other people -- but now, to your dismay, you find you've joined the club.

A common aspect of post-polio is chronic pain which affect us in many ways. It affects our thoughts, our mood and our relationships. People become more internally focused. Often people feel bad about themselves, inadequate in their usual roles. For example, one may wish to make a dress for a granddaughter, or a gourmet dinner for friends but be hurting too much to do it. This can lead to feelings of guilt and of self-punishment.

Some may feel depressed and discouraged because they can't do the things they used to do. Pain creates internal stress. Stress in turn affects our perception of pain. When you are feeling down or unhappy, your ability to distract yourself from your pain is decreased. Since the mind and body interact, these emotional reactions lead to increased muscle tension and anxiety, causing physiological changes within the body incompatible with relaxation. You need to learn ways to relax, to regenerate emotionally and physically. Family members may have several styles of coping when dealing with someone with chronic pain. Denial and avoidance is common. You may avoid talking with your partner, pretending not to notice the distress. Others may avoid by taking over their partner's responsibilities. These coping strategies are not necessarily bad unless you are unaware of your own feelings regarding the change in your partner's status.

Why do people hold back from expressing their feelings? Sometimes they are afraid to talk about the current changes as they don't want to draw attention to the fact that the partner is changing.

Many also feel protective of their partner, believing that talking about their own feelings and worries will make their partner feel worse since the partner may already be afraid and demoralized.

Some don't feel they have the right to complain, or resent having to make sacrifices, work harder, do more than the spouse, and give up activities, but they may feel too guilty to express any of these feelings.

Many partners feel frustration at not being able to do more to help, or are frustrated at seeing the polio survivor make mistakes in pushing too hard and not pacing themselves and being unable to stop them.

Loss of control is at the heart of all disabling conditions, and often this loss of control is felt almost as strongly, although differently by the families and friends of the disabled.

At the Workshop: What polio survivors had to say, what families had to say.

The group was divided into polio survivors and family members. Each group was asked one question, with discussion lasting 45 minutes. They then reconvened to summarize and discuss what the two groups said. The question posed to each group was:

"What part of the experience of the post-polio syndrome is most difficult to communicate to your spouse/family?"

The Polio Survivors: by all accounts this turned out to be an intense discussion. Strong feelings were stirred up. Many were moved, some cried. It was clear that the process of confronting the emotions surrounding the experience of post-polio is difficult and painful. Similarly communicating about these feelings to family and even to other polio survivors can sometimes feel overwhelming.

Paraphrased, here are some of the areas of concern:

Conflict within the group emerged when some participants expressed fear and frustration and others reacted with anger. It seemed that both fear and anger were central and universal experiences, but that people cope differently. The anger expressed seemed to grow out of a need to fight feelings of vulnerability and helplessness and instead maintain a sense of control and a positive attitude. Worried that their fears and sorrow will pull them down, and unwilling to let themselves stay down, some people use anger to protect against feeling fear. Other people are afraid of how intense their anger can become and so they inhibit and suppress it.

Partners and families: All expressed a deep commitment to their partner and a readiness to be a part of their lives, regardless of changes in physical status. This commitment was not naive or superficial, but seemed founded on genuine love and respect for the challenges their partner have faced and will continue to face.

They acknowledged that coping with post-polio syndrome involves a series of compromises, but they adapt by remaining flexible and tolerant. Within this group there was much commonality, but when differences of experience emerged that group was quite respectful and compassionate.

Partner and family expressed the following concerns:

In conclusion, there was broad agreement that life is all about challenge and response, that amidst all the hardship, post-polio presents an opportunity for personal growth for both survivors and family if the challenge can be faced with flexibility, acceptance and openness.


DUES FOR 1998:- Please take a look at your mailing label - on it you'll see the month and year we received your 1997 dues, i.e., 1/97 means it was received in January 1997, so your 1998 dues is now due. The bottom half of the last page is our "Dues/Mailing List" sheet. If there is only "97" on your label it means that you indicated to us that you wanted to receive the newsletter but paid no dues. That's OK as we still believe that anyone who wants information should receive it -- but we do need you to return the tear sheet with either the "Dues" box checked or the "Keep me on the Mailing List" box checked.

Your dues covers the supplies we need to send out the informarion packets to all inquiring about Post-Polio Syndrome, any other correspondence we do. and postage for publicity and for the out-of-country (21) newsletters that we send out. We are fortunate in that the "Free Matter for the Blind and Physically Handicapped" status takes care of the postage for the over 450 newsletters sent out within the United States. We network with approximately 60 other support groups throughout the United States, Canada. Australia and New Zealand - some 40 of these send us their newsletters. We receive as many dues checks from our out-of-state members as we do from our Florida members. So, please check your mailing label and return the tear sheet. We really need your support now more than ever.


I've been busy e-mailing back and forth with not only family members, but with a group of polio survivors. The following two items are from these sources. The first is from my cousin Donna in Ft. Lauderdale. The second is from one of the members of the polio email group. Enjoy both of them - and think about them.


There were these two brothers, 8 and 10, who were very mischievous. What ever went wrong in the neighborhood it turned out that they always had a hand in it. Their parents were at their wits end trying to control them. Hearing about a priest nearby who worked with problem boys, the mother the father that they ask the priest to talk with the boys. The father replied, "Sure, do that before I kill them!"

The mother went to the priest and made her request. He agreed, but said he wanted to see the younger boy first and alone. So the mother sent the younger son to the priest.

The priest sat the boy down across from the huge impressive desk he sat behind. For about five minutes they sat staring at each other. Finally the priest pointed his forefinger at the boy and asked, "Where is God?"

The boy looked under the desk, in the corners of the room, all around the room, but said nothing. Again, louder this time, the priest pointed at the boy and asked, "Where is God?"

Again the boy looked around but said nothing. A third time, in a louder, firmer voice, the priest leaned far across the desk and put his forefinger almost to the boy's nose, and asked, "Where is God?"

The boy panicked and ran all the way home. Finding his older brother, he dragged him upstairs to their room and into the closet, where they usually plotted their mischief. He finally said, "We are in B-I-G trouble?"

The older brother asked, "What do you mean?"

His brother replied, "God is missing and they think we did it!!!"


The Wemmicks were small wooden people. Each of the wooden people was carved by a. woodworker named Eli. His workshop sat on a hill overlooking their village.

Every Wemmick was different. Some had big noses, others had large eyes. Some were tall and others were short. Some wore hats, others wore coats. But all were made by the same carver and all lived in the village, And all day, every day, theWemmicks did the same thing; they gave each other stickers. Each Wemmick had a box of golden star stickers and a box of gray dot stickers. Up and down the streets all over the city people could be seen sticking stars or dots on one another. The pretty ones, those with smooth wood and fine paint, always got stars. But if the wood was rough or the paint chipped, the Wemmicks gave dots. The talented ones got stars, to. Some could lift big sticks high above their heads or jump over tall boxes. Still others knew big words or could sing very pretty songs. Everyone gave them stars. Some Wemmicks had stars all over them! Every time they got a star it made them feel so good that they did something else and got another star.

Others, though, could do little. They got dots. Punchinello was one of these. He tried to jump high like the others, but he always fell. And when he fell, the others would gather around and give him dots. Sometimes when he fell, it would scar his wood, so the people would give him more dots. He would try to explain why he fell and say something silly, and the Wemmicks would give him more dots.

After a while he had so many dots that he didn't want to go outside. He was afraid he would do something dumb such as forget his hat or step in the water, and then people would give him another dot. In fact, he had so many gray dots that some people would come up and give him one without reason. "He deserves lots of dots," the wooden people would agree with one another. "He's not a good wooden person." After a while Punchinello believed them. "I'm not a good Wemmick," he would say. The few times he went outside he hung around other Wemmicks who had a lot of dots. He felt better around them.

One day he met a Wemmick who was unlike any he'd ever met. She had no dots or stars. She was just wooden. Her name was Lulia. It wasn't that people didn't try to give her stickers; it's just that the stickers didn't stick. Some admired Lulia for having no dots, so they would run up and give her a star. But it would fall off. Some would look down on her for having no stars, so they would give her a dot. But it wouldn't stay either.

"That's the way I want to be," thought Punchinello. "I don't want anyone's marks." So he asked the stickerless Wemmick how she did it. "It's easy," Lulia replied, "every day I go see Eli."

"Eli?" asked Punchinello.

"Yes, Eli. The woodcarver. I sit in the workshop with him," replied Lulia.

"Why?" asked Punchinello.

"Why don't you find out for yourself? Go up the hill. He's there." said Lulia. And with that the Wemmick with no marks turned and skipped away.

"But he won't want to see me!" Punchinello cried out.

Lulia didn't hear. So Punchinello went home. He sat near a window and watched the wooden people as they scurried around giving each other stars and dots. "It's not right," he muttered to himself. And he resolved to go see Eli. He walked up the narrow path to the top of the hill and stepped into the big shop. His wooden eyes widened at the size of everything. The stool was as tall as he was. He had to stretch on his tiptoes to see the top of the workbench. A hammer was as long as his arm. Punchinello swallowed hard. "I'm not staying here!" and he turned to leave. Then he heard his name.

"Punchinello?" The voice was deep and strong. Punchinello stopped. "Punchinello! How good to see you. Come and let me have a look at you."

Punchinello turned slowly and looked at the large bearded craftsman. "You know my name?" the little Wemmick asked. "Of course I do. I made you." Eli stooped down and picked him up and set him on the bench. "Hmm," the maker spoke thoughtfully as he inspected the gray circles. "Looks like you've been given some bad marks."

"I didn't mean to, Eli. I really tried hard."

"Oh, you don't have to defend yourself to me, child. I don't care what the other Wemmicks think."

"You don't?"

"`No, and you shouldn't either. Who are they to give stars or dots? They're Wemmicks just like you. What they think doesn't matter, Punchinello. All that matters is what I think. And I think you are pretty special." Punchinello laughed. "Me, special? Why? I can't walk fast. I can't jump. My paint is peeling. Why do I matter to you?" Eli looked at Punchinello, put his hands on those small wooden shoulders, and spoke very slowly. "Because you're mine. That's why you matter to me." Punchinello had never had anyone look at him like this -- much less his maker. He didn't know what to say. "Every day I've been hoping you'd come," Eli explained.

"I came because I met someone who had no marks," said Punchinello.

"I know. She told me about you," replied Eli.

"Why don't the stickers stay on her?" asked Punchinello.

Eli said, "Because she has decided that what I think is more important than what they think. The stickers only stick if you let them."

"What?" queried Punchinello.

"The stickers only stick if they matter to you. The more you trust my love, the less you care about the stickers," said Eli.

Punchinello thought and then said, "I'm not sure I understand."

Eli replied, "You will,·but it will take time. You've got a lot of marks. For now, just come to see me every day and let me remind you how much I care."

Eli lifted Punchinello off the bench and set him on the ground. "Remember," Eli said as the Wemmick walked out the door, "You are special.because I made you. And I don't make mistakes."

Punchinello didn't stop, but in his heart he thought, "I think he really means it"

And, when he did, a dot fell to the ground.

by Max Lucado


Reprinted from Polio Heroes of Tenn., August 1997

The following letter is a reply to a request, by Nickie Lancaster, for information regarding muscle weakness from taking NIACIN. It is from Ruth Wyler-Plaut of New Jersey who does medication research. A member of Polio Heroes had reported a reaction similar to that of Mevacor and Lopid.

August 3, 1997

Dear Nickie,

Please forgive the delay in answering your question re niacin. I just came back Tuesday from a two-week concert tour in France with the chorale group my husband and I sing with. The two huge grocery bags full of mail that accumulated have taken a bit of time to work through. Navigating France with crutches and wheelchair was a challenge, France has installed curb cuts in many areas but few other facilities exist for people in wheelchairs and most of the time a person to push the chair is needed. If I hadn't been able to walk some stairs, I would have been in real trouble. But it is a beautiful country worth the effort to see.

Niacin, more commonly called nicotinic acid, is a B-complex vitamin and constituent of the redox co-enzymes nicotinamide adenine dinucleotide (NAD) and nicotinamide adenine dinucleotidephosphate(NADP). As a B vitamin, it is a contained in multivitamin tablets. Vitamin doses run around 20 milligrams a day (at least, that is what my Unicap Multivitamin tablet contains). It is also used occasionally as a vasodilator and, as you noted to reduce plasma cholesterol levels. Doses for these indications run around 2 to 8 grams daily.

It decreases VLDL (very low density lipoprotein) and the LDL (low density lipoprotein) and IDL (intermediate density lipoprotein) components of VLDL. The precise mechanism of action in reducing cholesterol levels is not known, but it is speculated that it is related to inhibition of lipolysis (splitting up of fats) in adipose (fatty) tissue, decreased esterification of triglycerides in the liver, and increased activity of lipoprotein lipase (often deficient in people with elevated cholesterol levels). It does not produce any detectable changes in total body synthesis of cholesterol or significantly alter excretion of bile acids (which contain cholesterol). So much for Goodman and Gilman 'The Pharmacologic Basis of Therapeutics' and the Physician's Desk Reference (PDR).

Rare cases of rhabdomyolysis (muscle breakdown) have been reported when it has been given with drugs like Mevacor or Lopid. The PDR recommends not taking niacin with aspirin. There are no mentions of muscle pain, weakness, rhabdomyolysis, etc. when given alone. However, it is such an 'old' drug that often the package insert information is not updated to include newly observed adverse effects.

However, what does this all add up to. It has been my observation that interrupting the synthesis of cholesterol, a component of almost every part of our body including muscles, has the potential for causing problems. Obviously your member is one of those people very susceptible to a drug that lowers cholesterol levels/production. Did she 'recover' muscle strength when she stopped taking the drug?

I must thank you again for sending me your newsletter. It always has interesting information in it. I was glad to see the comments re curare in the recent one. As far as I can determine curare per se is no longer available for use. Other more effective muscle relaxants are available. There was a nursing strike at University Hospital in Iowa City when I had polio in 1952 and I was given curare to reduce muscle spasms (in lieu of hot packs). I was 9 months pregnant at the time. This was in the era when it was believed that little passed the placental barrier. Thank heavens that baby, Peter, was apparently unaffected by either my polio or the curare - he's 6'2", very active physically, and the father of 5 of my 13 healthy, wonderful grandchildren.

Any other reports of drug reactions are most welcome. I am working on a condensation of Dr. Bruno's paper on precautions for PPS people undegoing dental surgery, a spin-off of his one on general surgery. It should be done soon.

Keep up the good work!!!

/s/ Ruth

(We decided to print Ruth's whole letter because of her other interesting observations. Thanks Ruth for all your work!)

Editor's Note:- If anyone has had adverse reactions to these medications, contact Nickie Lancaster, Polio Heroes of Tenn, 529 Albany Drive, Hermitage, TN 37076. 1-615-889-3007.


Reprinted from Current Tides, Atlantic County Post-Polio Support Group, November 1997.


by Steve Stelmach, CPA

I think most of us know the usual and ordinary type of medical expenses that are deductible in arriving at our taxable income. They include amounts paid for the diagnosis, care, treatment, or prevention of illness or disease, including certain transportation cost and medical insurance premiums. What I will cover in this article are medical expenses of an unusual nature that may or may not be deductible.

A medical expense deduction is allowed for lodging while away from home primarily for and essential to medical care. This lodging deduction is limited to amounts that are not lavish or extravagant and cannot exceed $50 per night for each individual. The deduction may also be claimed for a person who must accompany the individual seeking medical care.

Special schooling for a physically or mentally handicapped child or one needing psychiatric treatment is deductible. Amounts paid for inpatient treatment of alcoholism or drug addiction at a therapeutic center and for meals and lodging furnished as a necessary incident to the treatment are deductible. Amounts paid to acquire, train and maintain a dog for assisting a blind, deaf, or physically disabled individual are deductible.

Home improvements that are primarily for medical care qualify for the medical expense deduction only to the extent that the cost of the improvement exceeds any increase in the value of the property. In other words, the entire cost of any improvement that did not increase the value of the property is deductible. Expenditures incurred to remove structural barriers to accommodate the condition of a physically handicapped person generally do not improve the value of the residence and, therefore, are fully deductible.

The costs of birth control pills prescribed by a doctor, a legal abortion or a vasectomy are deductible. An amount for psychiatric treatment of sexual inadequacy is a medical deduction, but marriage counselling fees are not. Also not deductible are expenditures for unnecessary cosmetic surgery. The cost of weight-reduction, smoking-cessation or similar programs to improve general health that is unrelated to a particular disease or defect is not deductible. However, costs for a program prescribed by a doctor for treatment of a specific disease are deductible.

An individual and spouse are entitled to an itemized deduction for qualifying medical expenses paid during the tax year including medical expenses for their dependents to the extent that such expenses exceed 7.5% of their adjusted gross income. As an example, if your adjusted gross income for the year is $30,000, your medical expenses that exceed $2,250 ($30,000 x 7.5%) are deductible. If you have an unusual medical-related expense and are not sure if it qualifies, do not overlook it - get the advice of a tax professional, and hopefully, the tax savings will exceed the cost of obtaining such advice.


Reprinted from Post-Polio Association of South Florida, November 1997


By C. Vandenakker, MD


Causes of pain are numerous, but those specific to post-polio syndrome appear to be related to overuse of weak muscles along with abnormal joint and limb biomechanics and degenerative changes.

Pain syndromes can be classified into:

1. Post-polio muscle pain
    This pain affects the muscles affected by polio. It is a deep or superficial aching pain, similar to the pain of acute polio. It is often associated with muscle cramps, twitching, or crawling feeling. It often occurs at night or the end of the day. It is exacerbated by physical activity stress, and cold.
2. Overuse pain
    This includes injuries to soft tissues: muscle, tendons, bursa, and ligaments. Common examples are rotator cuff tendonitis, medial or lateral epicondylitis, trochanteric bursitis and myofascial pain. This would include all strains, sprains, or overuse of the 'strong' limb. Most of these occur due to poor body mechanics, abnormal positioning or changes in posture. Overuse symptoms are very common in the upper extremities of crutch/cane users.
3. Biomechanical pain
    Change in normal body biomechanics as well as normal wear and tear on joints results in degenerative joint disease (arthritis), degenerative changes in the spine(disk degeneration and worsening of curvature of the spine), and nerve compression syndromes.
Changes in body mechanics due to the weakness from polio makes joints very susceptible to wear and tear or degeneration - both in the strong limbs where there is often increased weight bearing and in the weak limbs where prolonged strain on unstable joints, protected only by ligaments, results in stretching of ligaments and increasing deformity. Those who rely on wheelchairs or crutches often show the wear and tear in the joints of the upper extremities. The joint pain may or may not be associated with swelling. X-rays usually show extensive degenerative changes.
The nerve compression syndromes include carpal tunnel syndrome, ulnar neuropathy at the elbow or wrist, brachial plexopathy and cervical or lumbar radiculopathies. These syndromes occur when there is pressure on a nerve, either due to degenerative changes that result in bone spurs, or enlargement of tendons or ligaments due to over-stressing, disk herniations in the spine, or a combination of factors. Neuropathies can be very painful and are often characterized by burning, tingling, and sensory loss, as well as weakness.
4. Bone pain
    Most often the cause of bone pain in a polio survivor is severe osteoporosis or fractures. Fractures may be due to trauma (most commonly falls) or simply collapse of bones or compression fractures due to severe osteoporosis.


1. Evaluation starts with assessment of the pain.
    Where is the pain? How would you describe it?
How long has it hurt? Is it constant?
What seems to aggravate it? What alleviates it?
Is it associated with other symptoms?
How does it limit your activities?
Have you tried any treatments?
What? Has it helped?
Pain drawing may be helpful!
2. Thorough medical assessment including history, physical exam, and appropriate dignostic studies are used to identify the source. Studies that may be used include:
Special imaging, i.e. CT scan, MRI, or bone scan
Nerve conduction studies/EMG


1. Basic principles:
    Improve body mechanics
Correct or minimize postural and gait deviations mechanically
Protect and support weak muscles and joints
Promote lifestyle modifications
Adjust work load on muscles and joints to match capacity
Control inflammation and muscle spasm
2. Therapies utilized:
Medications - most commonly non-steroidal anti-inflammatories or low dose anti-depressants
Behavior modification - pacing
Bracing or assistive devices, positioning aids
Spray and stretch or trigger point injections
Joint injections
Surgical intervention
Weight loss
SAFE exercise
3. Avoiding the 'pain cycle'
    Pain > inactivity > increased weakness and loss of flexibility > frustration and depression > overexertion > damage to relationships with friends and family
Learn to accept your condition
Learn to relax
Let your feelings and needs to be known
Problem solve / find new ways of remaining involved and active in relationships

In essence, pain is part of the post-polio syndrome and we have to learn how to deal with it as effectively as possible. We need to review any recommendations and incorporate them into our own individual lifestyles.


The following was sent to us by Jack Briggs, a member of our support group and past president or the Orlando support group.


When I turned forty-five I feared that I was growing old. "Don't worry." said all my loyal friends. "Remember what you've been told. The coming years will be your best. Old age is solid gold."

At fifty I felt again those "looming old age" fears. My good friends came to comfort me and dry my woeful tears. "You should be happy, growing old. You are approaching your Golden Years."

So -- now I'm over sixty and, as I've often stated, the benefits of growing old have been greatly over-rated. So far my "Golden Years" have not even been gold-plated.

I guess by the time I'm sixty-five my bitterness will pass. I'll have faced my disappointment, and become reconciled, alas, to the knowledge that my "Golden Years" are really more like BRASS.

Editor's Note:- Although the "benefits" of my "Golden Years" are not as golden as I would have liked, I really don't think that they are brass. I feel that I'm slightly tarnished, but definitely not brass!!


The North Central Florida PPS Spt Grp, in the Ocala area, is having its 7th Annual Seminar on Feb. 14th, at the Holiday Inn West, in Ocala (off of I-75). Registration begins at 12:00 noon and is $15 per person. The Seminar begins at 1:00. Speakers are: Dr. Richard Bruno and Nancy Frick. Attendance is limited to 200. For further information call Carolyn Raville at 352 459-1731.


Reprint from Polio News, Post Polio Support Society of New Zealand. August 1997; reprinted from February 1997, BPASS British Columbia Newsletter



One needs enough sleep to make you feel good, alert, and wide awake. If you wake during the night, this interferes with your sleep cycles. Sleep needs normally decrease with age. In Post-Polio, fatigue makes one require more rest. Rest does not always mean sleep. Many Polio survivors have weakening trunk and diaphragm muscles. This affects sleep and ventilation. Scoliosis can also be a major factor in ventilation. Not getting enough sleep can mean daytime fatigue and diminished alertness, thus a vicious cycle. If you don't wake up for 30 seconds or more, you don't know you're awake, but your sleep is disturbed. Post Polios can have brief wakes 3-400 times a night. When respiratory and trunk muscles are overworked and fatigued, ventilation is affected. The resulting effect may show loss of energy, overwhelming sleepiness in early or mid-afternoon, inability to concentrate, decreased memory (temporary), speech may become slower and quieter, inability to read or study for more than a few minutes, and even accidents. If a mid-afternoon rest or nap is taken, one is refreshed and symptoms are greatly diminished. What has happened during the night? You may have noticed that it is difficult to breathe lying flat, elevating the trunk more and more. Sleep has become restless, perhaps because of leg jerks, leg pains, general muscle twitching, joint aches. Your partner reports snoring (although 60% of the population snores) or that you seem to stop breathing at times. Perhaps you grind your teeth, or you awake choking on your own saliva, and your mouth is very dry. While each of these problems may not seem much, collectively, you didn't get much rest or sleep, so you are tired when you wake up for the new day. What is happening physicologically? Overuse and fatigue during the day can cause increased fasciculations (muscle twitchings) at night. You may not even be aware that the jerking is waking you.

Pulmonary function may be lower. Breathing is much more shallow during sleep. Polio survivors tend to inhale fine, but exhale poorly, thus causing low oxygen levels and high carbon dioxide levels in the blood. Red blood cell count may rise due to underventilation affecting blood circulation. All of this may result in nightmares, shortness of breath and morning headaches. One of the key ways to determine if lack of restful sleep is the cause of the morning headaches is to take three very deep and slow breaths upon awakening, exhaling completely and slowly. If the headache is then gone, you were underventilating. Stretching like your dog or cat before getting out of bed may decrease the pain in joints and muscles as well.

What to do? Polio survivors with any of these problems should consult your Internist or the doctor who specializes in those with Post Polio, Physiatrist (doctor of Physical Medicine and Rehabilitation). You may need to be referred for a Pulmonary function test (which should be done lying and sitting), vital capacity test and/or a skeeo kap analysis. These tests should also be done by those who are familiar with Post Polio, and not all Pulmonologists have the required knowledge of Polio. In the event that you should, in the future, require anesthesia, this could be of major importance. Proper treatment is vital to the quality of your life. A brief word about sleeping pills. Many of the nonprescription sleep aids contain Benedryl or Nytol, which are antihistamines. The Public Citizens Health Research Group (in the U.S.) recently reported that these present their own adverse effect when taken on a regular basis by older adults. Many of these effects are similar to the above symptoms plus sweating malfunction, sexual dysfunction and worsening of glaucoma. As with Sedative/Tranquilizer medication, lower than normal dosage is usually best for Polio survivors. All of these drugs can become drugs of dependence. Consult with your physician even concerning over-the-counter self-medications. Use for short term and with caution.


Nationwide health surveys have shown that 1/3 of the North American population has experienced insomnia. Half of those with insomnia reported it to be a chronic, serious problem. Only 10% of this group have sought medical attention. Insomnia is a symptom, not a diagnosis. It is defined as the inability to fall asleep or to stay asleep. There are many causes for chronic insomnia. These include: psycho-physiological factors (stressful situations), depression, anxiety, drugs or alcohol and medical problems. The treatment for insomnia is based on the underlying cause.

SLEEP APNEA: Sleep apnea is a sleep disorder which causes the patient to stop breathing many times during each night's sleep. Symptoms include excessive daytime sleepiness and loud snoring. Some sufferers are described as having snorting or gasping respirations during sleep. Treatment is tailored to the patient's individual problem. Weight loss, the use of a nasal mask during sleep, or surgical resection of excess tissue in the throat often corrects the disorder.

PERIODIC LEG MOVEMENTS IN SLEEP OR FASCICULATIONS: Periodic leg movements in sleep are stereotypic, repetitive movements of the lower extremities. Movements typically occur every 20-40 seconds. Episodes may last from a few minutes to several hours. The cause is not always known. (In polio, it may be due to overuse.) The patient is rarely aware of these movements, although the bed partner may complain about being kicked periodically throughout the night. A similar syndrome called Restless Legs Syndrome is characterized by unpleasant creeping sensations in the legs which produce an irresistible need to keep the legs moving. (In Polio, this may be due to Polio leg pain or cold intolerance.) As we grow older, sleeping pills tend to make interruptions in breathing occur more often and last longer. (This can cause special problems with Post Polio.) (This is a partial summary of information provided by St. Thomas Hospital Sleep Center and Rose Hall, Manager of the Sleep Center. St. Thomas is an Accredited Sleep Disorder Center.)

3. NAPS: Boon or bane for a good night's sleep?

Around mid-afternoon, an irresistible urge comes over you. Your eyes grow heavy, you give a yawn or two, and before you know it, you're asleep. (I knew somebody was watching!)

Is there anything wrong with taking a snooze during the day?

The answer isn't clear-cut. About 80 per cent of people who take naps during the day sleep poorly that night.

On the other hand, about 20 percent wake up from their naps energized and clear-headed, and then sleep better the following night.

Yet the advantages and disadvantages of napping vary too much to generalize about who should or shouldn't nap.

Napping is natural

The urge for a mid-day snooze is built into your body's biological clock. Researchers find that this typically occurs between 1 and 4 p.m., as indicated by a slight dip in your body temperature.

Yet the biological urge to nap·isn't overpowering. North Americans tend to ignore it. Other cultures incorporate it into their lifestyles. Consider the Mexican siesta and the Greek custom of closing businesses from noon to 4 p.m.

The "naptitude" test

To get a better idea of how naps affect your energy level and quality of nighttime rest, try this test. For one week, take a daily nap. Then the next week, don't nap.

During the two-week period, keep a sleep log. Record when you go to bed at night, how long it takes you to fall asleep, how many times you wake up, how many total hours you sleep, and how you feel in the morning. During the week you take naps, also record how you feel after your mid-day snooze.

At the end of the experiment, try tojudge whether naps are good for you based on how they affect your sleep habits.

Tips for nappers

If you find a nap refreshes you and doesn't interfere with night-time sleep, try these ideas to help you make the most of your nap:

Keep it short - A half-hour nap is ideal. Naps longer than an hour or two are more likely to interfere with your night-time sleep.

Take a mid-afternoon nap - Naps at this time produce a deep, physically invigorating slumber. You may find this type of rest is best.

If you can't fit an afternoon nap into your schedule, experiment with a short nap at a more convenient time. At mid-morning, a nap may be mentally refreshing because it's mainly rapid-eye-movement (REM) sleep, the stage during which dreaming occurs.

If you can't nap, just rest - Lie down and keep your mind on something else. If you fall asleep, fine. Set the alarm, just in case.

(Excerpted from the Mayo Clinic Health Letter via the Polio Heroes of Tennessee Newsletter)


The following is off my e-mail from LadyHawke. I thought it was worth reprinting here.

"LOVE and the CABBIE"

By Art Buchwald

I was in New York the other day and rode with a friend in a taxi. When we got out, my friend said to the driver, "Thank you for the ride. You did a superb job of driving."

The taxi driver was stunned for a second. Then he said, "Are you a wise guy or something?"

"No, my dear man, and I`m not putting you on. I admire the way you keep cool in heavy traffic."

"Yeah," the driver said and drove off.

"What was that all about?" I asked.

"I am trying to bring love back to New York," he said. "I believe it's the only thing that can save the city."

"How can one man save New York?"

"It's not one man. I believe I have made that taxi driver's day. Suppose he has 20 fares. He's going to be nice to those 20 fares because someone was nice to him. Those fares in turn will be kinder to their employees or shopkeepers or waiters or even their own families. Eventually the goodwill could spread to at least 1,000 people. Now that isn't bad, is it?"

"But you're depending on that taxi driver to pass your goodwill to others."

"I'm not depending on it," my friend said. "I'm aware that the system isn't foolproof so I might deal with ten different people today. If out of ten I can make three happy, then eventually I can indirectly influence the attitudes of 3,000 more."

"It sounds good on paper," I admitted, "but I'm not sure it works in practice."

"Nothing is lost if it doesn't. It didn't take any of my time to tell that man he was doing a good job. He neither received a larger tip nor a smaller tip. If it fell on deaf ears, so what? Tomorrow there will be another taxi driver I can try to make happy."

"You're some kind of a nut," I said.

"That shows how cynical you have become. I have made a study of this. The thing that seems to be lacking, besides money of course, for our postal employees, is that no one tells people who work for the post office what a good job they're doing."

"But they're not doing a good job."

"They're not doing a good job because they feel no one cares if they do or not. Why shouldn't someone say a kind word to them?"

We were walking past a structure in the process of being built and passed five workmen eating their lunch. My friend stopped. "That's a magnificent job you men have done. It must be difficult and dangerous work."

The workmen eyed my friend suspiciously.

"When will it be finished?"

"June," a man grunted.

"Ah. That really is impressive. You must all be very proud."

We walked away. I said to him, "I haven't seen anyone like you since The Man from LaMancha."

"When those men digest my words, they will feel better for it. Somehow the city will benefit from their happiness."

"But you can't do this all alone!" I protested. "You're just one man."

"The most important thing is not to get discouraged. Making people in the city become kind again is not an easy job, but if I can enlist other people in my campaign..."

"You just winked at a very plain-looking woman," I said.

"Yes, I know," he replied. "And if she's a schoolteacher, her class will be in for a fantastic day."

Editor's Note:- How about if we all try to make just one somebody's day a little better with a smile, a wink, or a good word. Let's try it!!!


Another goody from an e-mail buddy....


The special people in this world are the most precious and the most appreciated people of all. No matter what happens, they always understand. They go a million miles out of their way. They hold your hand.

They bring you smiles, when a smile is exactly what you need. They listen, and they hear what is said in the spaces between the words. They care, and they let you know you're in their prayers.

Special people always know the perfect thing to do. They can make your whole day just by saying something that no one else could have said. Sometimes you feel like they share with you a secret language that others can't tune into.

Special people can guide you, inspire you, comfort you, and light up your life with laughter. Special people understand your moods and nurture your needs, and they lovingly know just what you're after.

When your feelings come from deep inside and the need to be spoken to someone; you don't have to hide from, you share them... with special people.

When good news comes, special people are the first ones you turn to, and when feelings overflow and tears need to fall, special people help you through it all.

Special people bring sunlight into your life. They warm your world with their presence, whether they are far away or close by your side.

Special people are gifts that bring happiness, and treasures that money can't buy.

Editor's Note:- Ain't it the truth!!



By Peggy Palmer

Sailing aboard a cruise ship which has one of the best reputations for delivering a fun vacation to people from all over the world. Whether it's a 3-day jaunt over to the Bahamas, 7 days to Mexican ports of call, or a 10-day excursion to Alaska, it's life aboard ship that everyone raves about. Wonderful food served around the clock is enhanced by close personal attention from the waiter and busboy assigned to each table. On board shopping, pool swimming, deck sunbathing, live entertainment and casino gambling are always listed as highlights. My first experience with such amenities was a 3-day trip to Nassau aboard Carnival Cruise Line's Ecstasy the first weekend of December.

Skeptical of any ship's accessibility for wheelchairs, I was assured by the vacation planner (travel agent) that Carnival had fixed its features to fit those needs. Only on such a large ship could I be secure about such comforts, she guaranteed. There was no problem boarding; in spite of the ramp's steepness, my chair's motor powered me up the slope with no trouble. We were allowed to board before the crowd came aboard, and later allowed to leave early. A dozen elevators were evident right off the lobby where we entered, along with lots of spacious, shiny floor areas.

However, when we went into the cabin, all the space evaporated. They had obviously changed the bathroom door to open out and had widened it. But, the 4 or 5-inch lip that remained was the least of the problems when we discovered there wasn't enough margin to turn into the room due to a closet on the opposite wall. We requested a small ramp from the cabin steward to address the lip situation, and that was readily attained, but nothing could be done about the lack of overall space. We spent the entire trip tugging, pulling, lifting and otherwise uncomfortably maneuvering in that small area.

The food was delicious and the weather was fine, although a little cool to be on deck at some hours. The live shows were aimed at an audience around the age of 30, with a definite Latin flavor. Popular songs liked by that age group were accompanied by dancers who did no ballet or tap moves, but who performed precisely choreographed, jumpy, jerky, and repetitive motions with a dozen costume changes per number. The amateur show turned out to be the best show in that floating town, with the Cruise Director himself performing with audience members and volanteers. It was as funny as a comedy club performance.

The casino was fully equipped for all gambling games of choice, and was a very popular place. On the evening that I joined the action there, all dealers were standing at the customary high tables, even when just waiting for participants. Two low tables were sitting there with blackjack markings on them, but no dealers. I wanted to play but didn`t want to reach up to play my cards. I requested that a dealer move to a low table, and with permission from the floor boss, that was easily done. Our table was busy and full the rest of the night, and the dealers were continuously alternated there along with the rest of the high tables. Any time after that when I visited the slot machines in the casino, there were no dealers at the short tables again.

Moving from deck to deck was a matter of waiting for elevators. In spite of beautiful, winding, open staircases, many people chose to ride. Any doorway that separated the inside and outside decks was delineated by another one of those plastic or metal lips. At the wide, automatic doors, long ramps had been installed, but some doors weren't ramped and couldn't be handled by a wheelchair of any kind.

Shore excursions on our day in Nassau were plentiful. Choices of being taken to the blue lagoon for resting or snorkeling, seeing the historic districts of the island or being escorted in a small boat to some nearby islands for snorkeling were available for the asking. Both Bahamian buses and minivans were used. But --- absolutely none of them were accessible for wheelchair entry. We were left to wander the city streets near the port for shopping and sightseeing. We did several hours of shopping and then looked for a public bathroom. The stores and restaurants had outside doors so narrow that I couldn't even get into the room (including a fairly new McDonald's there). We finally found a large one·near the dock that was roomy enough, but it was dirty, smelly, buggy, and equipped with no toilet paper or paper towels.

There is one ship in a larger class than the rest of Carnival's fleet called the Destiny. It holds 600 more people than the usual 2000 passengers and 1000 crew members. That ship might be a more accessible and comfortable possibility for future trips by wheelchair users. I'm not sure I'll be among them.

Editor's Note:- Our thanks to Peggy and Cousin Linda Hill for this cruise report. Remember, we're always looking for articles and reports to put into our newsletter.


This was sent e-mail to us from Kay Sweeney, a polio survivor in Alabama - Thank you Kay!!


How often we wish for another chance to make a fresh beginning.
A chance to blot out our mistakes and change failure into winning --
And it does not take a special time to make a brand new start.
It only takes the deep desire to try with all our heart
To live a little better and to always be forgiving
And to add a little "sunshine" to the world in which we're living --
So never give up in despair and think that you are through.
For there's always a tomorrow and a chance to start anew.


We lost a member of our support group this month - Irving Grace. Mr. Grace never came to meetings, but called me every now and then to ask questions, give some advice, and - in general - just to let us know he was there. Our sincere condolences to the Grace family.


Please let us know what type of programs you would like us to have at our monthly meetings. We're running out of ideas. Any speakers you know would be most welcome!!!


In the printed version of this newsletter, the FECPPS members' birthdays and wedding anniversaries that fall in the months of the newsletter issue are listed. We have decided for the moment not to reproduce these lists in the web versions of newsletters.

LincsPPN Web Administration

904 676-2435

TIME: 2:00 - 4:00 PM
904 761-7999

SPEAKER: Our speaker will be a nutritionalist who will, hopefully, help us get on the right track to getting back in shape and losing some weight.
For further information call:
  BARBARA GOLDSTEIN at 904 676-2435
  DONNA McKENNEY at 407 574-7898
Dues Enclosed Yes/No   Keep me on mailing list Yes/No
If sending dues, please make Check ($5.00) Payable to and Mail to:-

12 Eclipse Trail, Ormand Beach, FL 32174


TELEPHONE No. (Home):-
TELEPHONE No. (Work):-
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Name and Date of Birth of Spouse:-

"Some See and Say Why - We Dream and Say Why Not" - Byron





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