FLORIDA  EAST  COAST  POST-POLIO  SUPPORT  GROUP   -   Vol. 14   #4

             12 Eclipse Trail  /  Ormond  Beach,  FL  32174  /  386  676-2435

        E-Mail:-  bgold@iag.net   --   Web Site:-  home.iag.net/~bgold/polio.htm

JANUARY/FEBRUARY 2008

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TO  ALL  OUR  FRIENDS  --

A  MOST  HAPPY  AND  HEALTHY  NEW  YEAR  2008

A  LOVE  FILLED  VALENTINE’S  DAY

 

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MEETING  NOTICE

 

January 20th,  2008NEW  YEAR’S  LUNCHEON –  Pharmacist Glenn Morin, of

Walgreens will discuss new programs and other important facts about drug plans.

March 30th, 2008

May 18th, 2008

September 21st, 2008

November 16th, 2008

 

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CONTENTS

 

From Barbara                                                     

Cherokee Seasons                                  

The Polio Personality                              

The Weight-loss Secret                          

We Must Stop this Immediately              

Tips on Pumping Gas                              

Three Little Words                                   

Henry’s Helpful Hints for Living w PPS  

Scientists Think They Know What The Appendix Does                     

Expect Success and it is Yours              

Keep Safe                                             

A Can of Worms                                   

Eye Exam Needed to Detect Glaucoma                                      

Alleviating Stress                                               

Top 10 Secrets to a Stress Free Personal Life                               

A Diet for Dealing with Stress           

The High Cholesterol you Actually Want                                            

 

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FROM BARBARA

 

          First – I’d like to wish everyone a most Happy and Healthy 2008. 

           

Secondly – My thanks to all for their good wishes.

         

Now, I’m sorry to say that I really have very little to report since our last newsletter – with the exception of the Carnival cruise just recently taken.   This was a four-day cruise on the Sensation.  Unlike their Celebration ship, I have to say that the Sensation was very accessible and I had no difficulties.  The only problem was the location of the handicapped room.  It was the last room starboard and the farthest from the elevators going to where the dining room and most other activities that we (my roommate and I) were involved in.  For me, on the scooter, it really presented no major problem – however, my roommate (83 years young and using a walker) had a difficult time walking the corridors.  It made me realize that in the future, when booking a cruise, I have to request a handicapped room mid-ship and near an elevator.  Personnel onboard were most helpful if I needed anything.  In the buffet dining area they were quick to take my tray and get me whatever I wanted.  Drinks were constantly brought to the table.  The entertainment was Vegas good.  I even came home $25 ahead from playing BlackJack. 

          We went to the islands of Freeport and Nassau.  At Freeport I stayed on the ship – however, at Nassau, I did get off the ship and went around the shopping area.  There were curb cuts for me to take the scooter up and down to look at the various shops – problem was (is) that 9 out of 10 shops had a step to get into the shop so I could not get into them to see what they had.  At two shops I was able to have a salesperson come out and show me items that they had in the window.  I wound up purchasing t-shirts for my grandchildren from a street-vendor.

 

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The below was e-mailed to me by Beverly Schroll – Our thanks to her.  Cherokee Seasons really tells us the old parable of “You can’t tell a book by it’s cover.” in a different way.

 

CHEROKEE SEASONS

There was an Indian Chief who had four sons. He wanted his sons to learn not to judge things too quickly. So he sent them each on a quest.., in turn.., to go and look at a pear tree that was a great distance away.

The first son went in the Winter, the second in the Spring, the third in Summer, and the youngest son in the Fall.

When they had all gone and come back, he called them together to describe what they had seen.

The first son said that the tree was ugly, bent, and twisted.

The second son said "no" it was covered with green buds and full of promise.

The third son disagreed; he said it was laden with blossoms that smelled so sweet and looked so beautiful. It was the most graceful thing he had ever seen.

The last son disagreed with all of them; he said it was ripe and drooping with fruit, full of life and fulfillment.

The man then explained to his sons that they were all right, because they had each seen but only one season in the tree's life.

He told them that you cannot judge a tree, or a person, by only one season, and that the essence of who they are and the pleasure, joy, and love that come from that life can only be measured at the end, when all the seasons are up.

If you give up when it's Winter, you will miss the promise of your Spring, the beauty of your Summer, the fulfillment of your Fall.

Moral:
Don't let the pain of one season destroy the joy of all the rest.

Don't judge life by one difficult season.

Persevere through the difficult patches and better times are sure to come.

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Reprinted from The Post-Polio Experience with the express permission of the author, Margaret E. Backman, Ph.D. Published by iUniverse, Inc., website (www.iuniverse.com).  No further reprints allowed without obtaining the permission of Dr. Backman (mbackman @aol.com).  Our thanks to Dr. Backman.

THE POLIO PERSONALITY:

DOES IT EXIST?

 

          People often ask if there is a “Polio Personality”.  My simple answer is:  “Not that I’ve seen.”

          Those with polio come in all stripes, as they say.  Some are ambitious, others more laid back, some have up-beat personalities, and some are depressed.

                Polio affected people in different ways, physically, psychologically, and socially.  Those who got polio came from different home environments.  They went to different institutions for treatment and had different treatments.  And they also had different educational and social opportunities and experiences.  The list goes on and on, with each factor interacting with the others, shaping the person.

          That said – the more complex answer recognizes that there is still some common ground that polio survivors share.  Although there may not be a specific polio personality or a specific polio self-concept, the stories of others may sound familiar, and you may find yourself reacting in a similar way.

          Let us look at one personality type that is common, though not universal.

 

THE DOER

          Many polio survivors describe them-selves as Doers. They are the ones that spend a lot of time taking care of others – family and friends.  (At this point you may be smiling and shaking your head in recognition.)

          The need to take care of others may come from guilt felt over the years, for having relied on others so much.  “Doing” may be a defense that is intended to lessen the sense of guilt and help you feel accepted.  In moderation “doing” can be a good thing, but when it takes on a life of its own and becomes “over-doing”, it can become a problem unto itself.

          Maria, a self-reported Doer, says that even when she gets tired, she is not able to stop herself:

“I just keep on “doing”, until I’m fatigued – and then I become resentful.”

 

“I do too much for people and come on too strong.”

 

“I try to fix others.  If I can fix others, I don’t have to focus on myself.”

 

HELPING THE DOER NOT TO OVER-DO

          Take a piece of paper and write down the WHYS and WHATS:

 

1.           Why do you feel you have to keep going?

2.           What are you afraid of?

3.           What do you think others will think of you if you don’t keep going and “doing” more?

4.           Why do you care?

5.           What would happen if you weren’t so helpful anymore, if you just stopped?

6.           What may you be avoiding in looking at yourself?

 

THE TYPE A PERSONALITY AND PPS:

FACT OR WHAT?

          Let us not confuse the Doer with the Type A personality.  Do polio survivors have Type A personalities?  Some seem to think so, since many of those who survived polio are real strivers and doers – so to speak.  But before we reach any conclusions we need to understand what is meant by Type A.

 

Type A and Type B Personalities

          People typically think of those with Type A personalities, as very active, ambitious, hardworking, and successful.  But this is not the whole story.

          The Type A personality is characterized by

  aggressiveness,

  competitiveness, and

  impatience.

 

          It has been described as the “hurry sickness.”  Those so classified are easily moved to

  anger

 

And show frequent displays of

  irritation, and

  hostility,

 

Particularly when things are not moving fast enough nor going as they would like.

          This is in contrast to the Type B personality, which is more relaxed and more accepting of life and of others.

 

RESEARCH FINDINGS

          Early studies of Type A personality looked at the relationship of this personality syndrome to heart attacks.  The implication of the findings was that a person’s Type A personality caused the heart attacks.  That is still the idea in the popular press, even though more recent research is showing the issue to be much more complex.

          Results are mixed and seem to depend upon the different questionnaires and interview techniques used to assess Type A traits.  It does appear, however, that certain traits, such as anger, hostility, cynicism, and suspiciousness affect a person’s tendency to succumb to some illnesses.

          The polio literature often refers to those with post-polio syndrome (PPS) as having Type A personalities.  If we accent this, we are then saying that those who had polio are typically hostile and angry, cynical and suspicious?  I think not.  Some may be, but is this the rule?  Having a little bit or some of the traits does not mean one is Type A.

          Amongst those who had the gumption to try psychotherapy with me, some survivors did exhibit Type A traits.  But I cannot say that this was in greater proportion than in the general population.  And there were certainly those with more “laid back” attitudes and behaviors, typical of the Type B personality.

          More research needs to be done before one can make statements with confidence about the relationship between personality and PPS.  In so doing, we must be careful that our surveys are not biased.

          Those who participate in research studies are quite possibly a select group.  Because of their character traits, survivors with Type A traits are the ones most likely to turn up at support groups or to seek help from clinics and physicians.  They are more assertive, for example, than those who stay home and do not seek help for their problems.  They are also more likely to answer questionnaires in greater numbers than their Type B counterparts, who are, thus, not well represented in our data.

 

Why is This Important?

          One reason is the common belief that over-doing it physically may have contributed to post-polio symptoms.  After all, the treatment early on was to exercise, exercise, exercise, and exercise.  And throughout life for many there was the continued pressure to be like others, to succeed, if not excel, in the mainstream.  Do; do more; do more and more.

          Still some hearing about the possible association between Type A and polio may worry:  Did I cause my post-polio symptoms?  Did all that exercise and activity throughout my life lead to PPS?

 

A BAD RAP

          The Type A personality has been given a bad rap.  It is not something to be ashamed of, not is it necessarily something to be changed.  In some cases, it may be a very good type of personality to have, as long as certain traits, such as hostility and anger, are kept under control.

          Persons with Type A are often very successful in their lives, and in terms of heart attacks do much better than their counterpart Type B’s when it comes to surviving a second heart attack.  Some think it is the very Type A traits that enable people to take better care of their health following the first attack.  Thus, it may be a good thing that some survivors of polio have the assertiveness and energy so common to the Type A; this may be what makes them seek better medical care and be active in keeping the medical profession on its toes.

 

PPS AND TYPE A

          So what does this mean in terms of the person who has had polio?  Did the earlier efforts in treatment cause people to become Type A’s?  Certainly there was pressure to exercise and to be reintegrated into society at large.  Yet in my clinical experience I cannot say that all those who had polio or have PPS fit the classic Type A description.  Indeed, many lead successful busy lives, but others were not so fortunate.  Those who were successful may have been ambitious, but not necessarily hostile or angry.

          Having polio or developing new symptoms can made one angry at times.  Being frustrated by physicians who do not understand can bring out hostile feelings, even in the most even-tempered.  But these feelings or behaviors alone do not make a Type A.  In fact it may be the keeping in of hostile feelings that compro-mise one’s health.  The issue is very complex.  As we’ve said before.

          Labeling may be useful in research when one is grouping large numbers of people for studies.  But labeling individuals can be misleading, inaccurate and possibly harmful.  If people who had polio – or for that matter, cancer, MS, or other diseases – are made to feel that their personalities are the cause of their physical problems, that is another burden put upon them.

          By overusing the term Type A, we obscure what the experience and behavior of those with PPS is really about – interfering with our deeper understanding of the late effects of polio.

 

 

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FECPPSG Editor’s Note:-  Since this is the first newsletter of 2008, and since most of us make a New Year’s pledge to lose weight, thought this would be a good one.

 

Reprinted from USA Weekend, Dec. 7-9, 2007 HealthSmart column.

 

The Weight-Loss Secret

Accentuate a good diet and

exercise to make it work.

 

          According to 2004 information from the Centers for Disease Control, 66% of adults are overweight or obese.  And the problem is not just limited to grown-ups.  The percentage of children and adoles-cents who are classified as overweight has more than doubled since the 1970s.

 

The problems associated with obesity include such devastating things as diabetes, heart disease and cancer.  Our current lifestyle has certainly been a major contributor to the problem, but genetics also plays a role.  Which one plays a bigger role has been a topic of great interest for several decades.

 

Another conundrum is that everyone doesn’t lose weight at the same rate.  As much as we tell folks to watch their diet and to exercise, it’s a fact that doing so works well for some people and not so well for others.

 

Various studies have been done to determine the rates at which people tend to lose weight.  The participants are put on the same diet and exercise regimens.  The results have shown that some people gain weight (in the form of fat) more rapidly than others when given excess calories, and they often lose fat more slowly when calories are restricted.  The differences are rooted in how we metabolize food, which, to a large extent, is determined genetically.

 

Some of you reading this might be thinking, “Because I come from a family of husky people, there’s no way I can lose weight.”  That’s not true.  You can.  But for those individuals with a greater genetic predisposition to hang on to extra weight, losing weight is likely to be more difficult.

 

So, how can we win the ongoing struggle to control our weight?  First accentuate the positive.  Don’t focus on the weight.  Instead, focus on developing healthy eating habits and being more active.

 

For one thing, make a strong effort to include more fruits and vegetables in your daily diet.  You also need to make physical activity a priority in your daily routine.  Healthy weight control requires burning extra calories, which comes through increased activity.  One way to do that is to develop a “work-week” mind-set about activity; that is, from Monday through Friday, keep in mind that you owe yourself a daily bout of exercise.

 

Having a positive perspective toward your health is a better approach than the negative, self-sacrificing mode many people adopt in an attempt to lose weight.  Above all, remember this:  Not all of us can be skinny, but all of us can be fit.

Tedd Mitchell, M.D., president and medical director of Dallas’ Cooper Clinic, writes HealthSmart every week.

 

FECPPSG Editor’s Note:-  Although this article says exercise is important (and I agree), remember that there are many of us who cannot really do exercise (such as me) – so, I intend to stick strictly to a good diet program and change my eating habits.

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Note from Barbara –This was in one of our previous newsletters, but I love it and it really is quite apropos for us. –

 

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THIS IS HAPPENING RIGHT HERE IN OUR OWN COUNTRY!


We Must Stop

This Immediately!


Have you noticed that stairs are getting steeper.  Groceries are heavier. And, everything is farther away.  Yesterday I walked to the corner and I was dumbfounded to discover how long our street had become!

 

And, you know, people are less considerate now, especially the young ones.  They speak in whispers all the time!  If you ask them to speak up they just keep repeating themselves, endlessly mouthing the same silent message until they're red in the face!  What do they think I am – a lip reader?

 

I also think they are much younger than I was at the same age.  On the other hand, people my own age are so much older than I am.  I ran into an old friend the other day and she has aged so much that she didn't even recognize me.

 

I got to thinking about the poor dear while I was combing my hair this morning, and in doing so, I glanced at my own refection.........  well, REALLY NOW – even mirrors are not made the way they used to be!

 

Another thing, everyone drives so fast these days!  You're risking life and limb if you happen to pull onto the freeway in front of them.  All I can say is their brakes must wear out awfully fast, the way I see them screech and swerve in my rear view mirror.

 

Clothing manufacturers are less civilized these days.  Why else would they suddenly start labeling a size 10 or 12 dress as 18 or 20?  Do they think no one notices?

 

The people who make bathroom scales are pulling the same prank.  Do they think I actually "believe" the number I see on that dial?  HA!  I would never let myself weigh that much!  Just who do these people think they're fooling?

 

I'd like to call up someone in authority to report what's going on -- but the telephone company is in on the conspiracy too: they've printed the phone books in such small type that no one could ever find a number in there! All I can do is pass this warning along:

 

WE ARE UNDER ATTACK!

 

Unless something drastic happens, pretty soon everyone will have to suffer these awful indignities.

 

PLEASE PASS THIS ON TO EVERYONE YOU KNOW AS SOON AS POSSIBLE SO WE CAN GET THIS CONSPIRACY STOPPED!

 

 

PS: I am sending this to you in a larger font size, because something has happened to my computer's fonts - they are smaller than they once were.

 

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More and more articles seem to be coming to us through our e-mails.  This was sent to us by one of our local members, Lee Rotstein.  Much thanks, Lee.

 

TIPS ON PUMPING GAS—        GOOD INFO!


I don't know what you guys are paying for gasoline... Here in
California we are also paying higher, up to $3.50 per gallon.  But my line of work is in petroleum for about 31 years now, so here are some tricks to get more of your money's worth for every gallon.

 

Here at the Kinder Morgan Pipeline where I work in San Jose, CA. we deliver about 4 million gallons in a 24-hour period thru the pipeline. One day is diesel the next day is jet fuel, and gasoline, regular and premium grades. We have 34-storage tanks here with a total capacity of 16,800,000 gallons.

 

TIPS:
Only buy or fill up your car or truck in the early morning when the ground temperature is still cold.  Remember that all service stations have their storage tanks buried below ground.  The colder the ground the more dense the gasoline, when it gets warmer gasoline expands, so buying in the afternoon or in the evening... your gallon is not exactly a gallon. 

 

In the petroleum business, the specific gravity and the temperature of the gasoline, diesel and jet fuel, ethanol and other petroleum products plays an important role.  A 1-degree rise in temperature is a big deal for this business. But the service stations do not have temperature compensation at the pumps.

 

When you're filling up do not squeeze the trigger of the nozzle to a fast mode. If you look you will see that the trigger has three (3) stages: low, middle, and high. In slow mode you should be pumping on low speed, thereby minimizing the vapors that are created while you are pumping. All hoses at the pump have a vapor return. If you are pumping on the fast rate, some of the liquid that goes to your tank becomes vapor. Those vapors are being sucked up and back into the underground storage tank so you're getting less worth for your money.

 

One of the most important tips is to fill up when your gas tank is HALF FULL or HALF EMPTY.  The reason for this is, the more gas you have in your tank the less air occupying its empty space. Gasoline evaporates faster than you can imagine. Gasoline storage tanks have an internal floating roof.  This roof serves as zero clearance between the gas and the atmosphere, so it minimizes the evapora-tion. Unlike service stations, here where I work, every truck that we load is temperature compensated so that every gallon is actually the exact amount.

 

Another reminder:  If there is a gasoline truck pumping into the storage tanks when you stop to buy gas, DO NOT fill up!  Most likely the gasoline is being stirred up as the gas is being delivered, and you might pick up some the dirt that normally settles on the bottom.

 

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Three little words

 

I suppose some degree of commerce would grind to a halt if telephone solicitors weren't able to call people at home during dinner hour. But that doesn't make it any more pleasant.

 

Now Steve Rubenstein, a writer for the San Francisco Chronicle, has proposed "Three Little Words" based on his brief experience in a telemarketing operation that would stop the nuisance for all time. The three little words are "Hold On, Please." Saying this while putting down your phone and walking off instead of hanging up immediately would make each telemarketing call so time-consuming that boiler rooms would grind to a halt. When you eventually hear the phone company's beep-beep-beep tone, you know it's time to go back and hang up your handset, which has efficiently completed its task. This might be one of those articles you'll want to e-mail to your friends. Three little words that eliminate telephone soliciting.

 

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Reprinted from the December 2007 – January 2008 Polio Deja View newsletter with special THANKS to Dr. Holland for e-mailing the article to us so that I didn’t have to retype it into our newsletter.

 

Henry’s Helpful Hints for

Living with Post-Polio Syndrome

                                                                                                          By Henry D Holland MD

 

When I was three years old, my mother became a victim of Schizophrenia.  She never recovered.  When I was eleven years old, I had paralytic polio.  I partially recovered.  These two life events were major factors in guiding my life toward a career as a physician and a psychiatrist.  For at least the sixteen years, I have struggled with Post-Polio Syndrome (PPS).  Most of you are quite familiar with all of the manifestations of that struggle.  For sixteen years, I have had the privilege of being a member of the Central Virginia Post-Polio Support Group, a marvelous group.  As a result, I have had the pleasure and challenge to communicate with hundreds of PPSers around the world.  I think I have learned a lot about PPS and the people who are living with this life changing disorder.  In this article, I will attempt to share what I am calling Helpful Hints for Living with Post-Polio Syndrome.  Many of these hints are similar to what is now called “mind – body” medicine.  Many of them are replicated in other lists and articles.  I offer these hints for your review, reflection, and response.  This list represents only my opinion and is not to be interpreted as anything more than that.

 

1.  Sleep:  Adequate, restful sleep is a major asset in living with PPS.  Successfully living with PPS usually requires more sleep than before the onset of PPS.  The amount of sleep may range from 8 to 12 hours.  This may be all nighttime sleep or could be a combination of nighttime sleep plus an afternoon nap.  Many symptoms of PPS can interrupt the attainment of this level of sleep.   Problems with pain, hypoven-tilation due to weakened respiratory muscles, sleep apnea, anxiety, panic attacks, and depression are common sleep disturbers.  Any of these disturb-ers need to be evaluated and treated before sleep hygiene can be improved. 

 

2.  Pain:  Pain and PPS are like partners of misery.  Every effort should be made to eliminate or reduce pain without resorting to narcotic analgesics.  A variety of pain management approaches may be tried.  This might include over the counter preparations such as Tylenol, Ibuprofen, aspirin, and other non-steroidal anti-inflammatory medications.  Non habit forming prescription medications may help pain and sleep problems.  Low doses of the tricyclic antidepressants and/or the selective serotonin reuptake inhibitors may help to reduce the daily pain level and improve sleep.  If one has made a genuine effort at managing pain by reduced activity, more rest, and the use of assistive devices, then the use of narcotic analgesics would be more appropriate.  Other pain management approaches might include moist heat as obtained in a heated pool, gentle massage, magnet applications, and even acupuncture.  Heated pools should not exceed 92 degrees F.  Massage should not be aggressive, and a trained professional should administer acupuncture. 

 

3.  Fatigue:  Fatigue is probably the single most commonly shared symptom of PPS.  Fatigue contributes to greater pain and sleep disturbance.  I believe that intermittent down time is the most effective method of managing fatigue. Down time means lying down prone or supine. Each person has to discover what is the best balance between down time and up time for each day.  For example, spending an hour reclined every four hours works well for many PPSers.   Medications to reduce fatigue have proven to be of minimal effectiveness in double blind studies.  Also many PPSers do not tolerate medications well and have numerous side effects.

 

4.  Respect new weakness.  If new weakness is detected or experienced, respect this reality and do not try to restore strength by an exercise program.  Exercising with this goal in mind will likely lead to more pain and a progression of the weakness.  Most of us get enough exercise just trying to maintain the activities of daily living and trying to remain independent.  Be sure that any physician or physical therapist who recommends exercise is fully knowledgeable about PPS.

 

5.  Blood pressure:  Maintaining normal blood pressure is most important for PPSers.  Many of us experience elevated systolic blood pressure (the upper number on a blood pressure reading) after exerting some physical effort.  Our heart rates may also increase during times of fatigue and minimal physical effort.  If this elevation of blood pressure persists, the risk for heart attack, heart failure, and stroke increase.  There are many effective medications to control blood pressure.  However, beta-blockers sometimes cause side effects for PPSers.  The systolic pressure should be below 140 at rest and our pulse rate should be below 100 at rest.

 

6.  Brain power: Utilize your brain or intellect to compensate for the increased physical limitations of PPS.  This is a process that most polio survivors have been doing for years.  PPS calls for an enhancement of this same process.  Read more.  Read some of the classics.  Audio books are a wonderful way to read without tiring your brain or eyes.  If your physical disability makes it difficult to hold a book or maintain a reading posture, you are eligible for the Federally funded audio (talking) books for the blind and handicapped.  A simple application has to be completed by your doctor to authorize this service.  I would also recommend the many benefits of owning a computer.  For PPSers, the investment required to purchase a computer is usually a rewarding under-taking.  You are never too old to enjoy and learn from a computer, which literally makes the world available to you.

 

7.  Doctors and therapists: Find doctors and other therapists who not only know about PPS, but are interested in learning more and will listen to you. However, be cautious if a doctor tends to blame all your symptoms on PPS because we are in an age group, which is vulnerable, to many other medical/ surgical problems.  Your doctor should rule out other causes of symptoms that simulate PPS symptoms.  Your doctor should not hesitate to refer you to an appropriate specialist if any symptoms are not explained.

 

8.  Herbal medicine: Americans now live an average of about thirty years longer than our ancestors of one hundred years ago.  This is largely due to antibiotics, better diagnostic and treat-ment techniques, improved nutrition and more prevention via vaccines.  Because we have it so good, we want it even better.  Thus, the herbal, vitamin, and nutrient alternative medicine busi-ness is booming.  Keep in mind that the Federal Drug Administration does not have the resources to monitor these alternative products as it does pre-scription medications.  Whether it be St. John’s Wort, Ginkgo Biloba, L-carnitine, Feverfew, the various vitamins, or fish oil, be sure that your physician knows what you are taking and remember that with many of these products, cheaper does not always mean purity of the product.  If an alternative medicine seems to be helping you, continue it.  Nobody has found a consistently effect-tive pharmaceutical treatment for PPS. 

 

9.  Talk to someone: Talk to someone who cares about your feelings in living with PPS.  This person might be your spouse, a family member, friend, or even a professional therapist.  Our support group is a healthy and welcome forum for talking about your feelings.  Many polio survivors have spent a lifetime of containing their feelings of loss and even anger.  To express these feelings to someone is very difficult, but the benefit is immense.

 

10.    Spiritual base: Having a faith or spiritual base that transcends the daily activities and struggles of this life can be an additional source of personal and inward strength.  This pilgrimage is a personal choice, but I believe such a pilgrimage provides a greater meaning to our time in the midst of the ages.

 

11.    Nutrition:  Enjoying good food is still one of the pleasures of life that most of us still can do.  That is the up side.  The down side is that we more easily gain weight, as we are more sedentary living with PPS.  The practical advice is to avoid big meals, especially at the end of the day.  Eat balanced meals with some emphasis on protein content.  Maintain good hydration.  Good hydration assists renal and pulmonary function. 

 

12.    Keep your feet up: When sitting, keep your feet elevated whenever possible.  Another advantage of taking intermittent down time throughout the day is the benefit of preventing or at least reducing dependent edema.  Weakened leg muscles, along with reduced motor activity, contributes to dependent edema.  Chronic dependent edema can lead to possible leg ulcers, deep vein clots, and phlebitis.  Complications of these conditions can result in life threatening pulmonary emboli.  Wearing support hose can also help prevent dependent edema.

 

13.    Don’t ignore headaches: Headaches are a common sign of PPS fatigue.  Have your doctor rule out other causes of headache such as hypertension, tension vascular headache, or some other medical problem.  A dull daily headache is often a sign of PPS fatigue and particularly brain fatigue. Brain fatigue is often marked by word finding difficulties, mental focusing, and concentration problems.  These brain fatigue symptoms are usually reversible with rest.  Rest and more rest is the best treatment for the dull headache of fatigue.

 

14.    Pace:  Approach pacing like you would an algebraic equation.  The daily physiological energy expended must equal the physiological energy stored and not exceed it.  Most of us are accustomed to expending more energy than we store or acquire.   If you know that a particular day’s activity will result in more energy expended, plan to spend more than one day to restore and recover that energy.  Balancing this energy equation over time results in successful pacing. Pacing reaps results, but not in a few days.  One should practice pacing for months and years. 

 

15.    Breathe well: Healthy breathing and good sleep hygiene are coupled together as I mentioned in #1.  Some-times, the muscles of breathing grow weaker with the progression of PPS.  Thus, there could be an insidious onset of chronic hypoventilation, which could contribute to an overall feeling of fatigue.  Also scoliosis, resulting from polio may advance with the progression of PPS and aging.  This process could restrict the ventilatory capacity of the lungs and lead to hypoventilation.  Measurements of pulmonary function and arterial blood gases can help to diagnose hypoventilation.  Most PPSers with these problems do not usually need added oxygen, but simply improved ventilation, often only at night.  Depending on the degree of hypo-ventilation, this condition can often be treated with a C-pap, bipap, or ventilator without the necessity of added oxygen.  Actually, adding oxygen with-out improving ventilation can increase the risk of carbon dioxide retention in many PPSers with scoliosis or weakened respiratory muscles. Untreated chronic hypoventilation can lead to respiratory failure and ultimately death.

 

16.    Extend recovery from any stress: Expect to take three to four times longer to recover from an infection, minor or major surgery, an injury, accident, or emotional upheaval.  For whatever the reason, the physiological restorative processes of the body and brain are delayed by PPS.  When any of these stresses occur, plan on taking longer to recover.

 

17.    Use your sense of humor: Many survivors of polio seem to possess a witty sense of humor and an upbeat approach to life.  A sense of humor is a good way to remain innovative, creative, and positive. Keep using this attribute.

 

18.    Sex and Intimacy: Sexual stimulation is good for the cardiovascular system.  Be creative with this stimulation.  The polio virus did not damage the sensory portion of the nervous system.  Feelings, both physical and emotional, are still potentially available for expression and perception.  Linda Van Aken and I wrote an article about PPS and Intimacy about a year ago.  That article attempts to address this issue.

 

19.    Be more dependent: Not only should you allow others to help, but also you should tell them how to help you.  If your spouse is your main helpmate, be cognizant that he/she also gets tired.  If you ask your spouse or anyone else to fetch or fix things for you, be organized about your requests and minimize their physical effort and time consumed.  Simply keeping a list of your needs or requests can help conserve your spouse or helper’s energy and reduce the development of interpersonal tension.  It is very difficult for PPSers to relinquish some controls, but in doing so, avoid trying to control your spouse or helper.  Communicate what you want or need, but be courteous and grateful in the process.

 

20.    Roll more, walk less: When walking becomes more difficult because of new weakness or fatigue, get some wheels and roll more.  If you can still walk some and rise unassisted from a chair, a scooter might be advisable.  A battery-motorized scooter allows you greater and safer mobility.  Scooters are great for malls, touring your neighborhood, and even in parks.  If your weakness is profound, an electric wheelchair is probably what you need.  Most health insurance carriers will pay for most of the cost of a scooter or electric wheelchair. Even Medicare covers these devices as long as your physician orders it.  Once you learn the value of electric mobility, you may want to invest in a van and a lift to be able to take your wheels wherever you go.

 

21.    Use assistive devices.  Many of us have found it necessary to acquire new braces, canes, and crutches in order to keep walking and maintain balance.  Accepting this need may be a step back in time for some.  Don’t resist this help.  By all means, do anything to prevent falls.  Do what is wise and necessary.  Install grab bars, elevate the toilet seat, use pick sticks, and install ramps.  I think it is wise to carry a cellular phone on your person (or wheelchair or scooter) at all times.  Use your brain to help yourself.   Only you know what you need and what may help.

 

22.    Never, ever give up.  During the struggle with acute polio and its aftermath, many of us were told, “No pain, no gain.”  We were encouraged to overcome adversity and that it was all up to us.   With PPS, we know that attempting gain will bring more pain and no real gain in the process.  However, we still need to retain our persevering and hopeful approach to life.  Giving up will serve no positive purpose and is a sign of depression.  We should press on, but pace the race.  We should be more like the turtle than the hare.

 

23.  To be added when a new hint comes from you.

 

FECPPSG Editor’s Note:-  Dr. Holland has told me that this article is about seven years old – however, I feel that it is as apropos now as it was then.

 

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Reprinted from Daytona Beach News-Journal, October 6, 2007

 

Scientists think they know

what the appendix does

by Seth Borenstein, Associated Press

 

Washington – Some scientists think they have figured out the real job of the troublesome and seemingly useless appendix:  It produces and protects good germs for your gut.

          That’s the theory from surgeons and immunologists at Duke University Medical School, published online in a scientific journal this week.