Permission has been granted from Dr. Krivickas for us to reprint the below article, originally printed in the Greater Boston Post-Polio Association “TRIUMPH”, Winter 2003

BREATHING PROBLEMS CAUSED

BY POST-POLIO SYNDROME

Lisa S. Krivickas, MD

Assistant Professor of Physical Medicine and Rehabilitation. Harvard Medical School and Spaulding Rehabilitation Hospital, Boston, MA

Polio survivors may have difficulties with breathing related to their polio. There are three groups of polio survivors with respiratory difficulties: 1) those who had respiratory failure during their acute illness and were never weaned from a ventilator, 2) those who develop breathing difficulties later in life, 3) and those with sleep disordered breathing (sleep apnea). This article will deal primarily with the latter two groups of patients.

As polio survivors age, they may experience accelerated strength loss both in muscles that were initially affected by polio but seemed to recover fully and in muscles that did not seem to be affected by the acute illness. These muscles may include those necessary for breathing such as the diaphragm, chest wall (intercostal), abdominal, and even neck (sternocleidomastoid and scalene) muscles. If these muscles lose enough strength, the ability to breathe is impaired. Early difficulties with breathing may not be recognized by the patient. In addition to muscle weakness, scoliosis (curvature of the

spine) and other superimposed lung diseases, such as asthma or chronic obstructive pulmonary disease (COPD) caused by smoking, can contribute to breathing difficulties.

In patients with polio who have breathing difficulties because of muscle weakness and do not have an additional form of lung disease, the problem is purely mechanical, i.e. due to inability to completely fill the lungs with air. One can think of the lungs as balloons that need to be fully inflated in order to work optimally. Muscle weakness can make it impossible to fully inflate the lungs. Once the lungs are inflated, the body is able to extract oxygen from the air in them without difficulty. Forced vital capacity (FVC) is a measure of the adequacy with which an individual can inflate his lungs. FVC is normally expressed as a percentage of the predicted value for the patient’s height and age. Most patients with polio do not experience symptoms related to underventilation until their FVC is 50% of predicted or less.

An arterial blood gas (ABG) is sometimes performed to assess adequacy of ventilation. A sample of blood is taken from the radial artery, near the wrist, so that both oxygen and carbon dioxide levels can be assessed. Because polio patients do not have difficulty extracting oxygen from air, these levels are usually normal until the FVC falls well below 50% of predicted. With advanced respiratory failure, the oxygen level may fall below normal, and the carbon dioxide level becomes elevated. The ABG is not a sensitive screening test for polio related breathing difficulties, but it is useful in assessing polio patients who already use ventilators.

Symptoms that suggest difficulties with breathing often occur first during the night because patients with muscle weakness frequently have a lower FVC when lying down than when sitting up. These symptoms may include poor sleep quality with frequent awakening, early morning headaches, excessive daytime fatigue or sleepiness, and frequent nightmares. Other signs of respiratory muscle weakness are inability to sleep lying down, frequent sighing, and a weak cough with difficulty raising secretions. A sign of more advanced respiratory failure is shortness of breath with exertion or when eating or speaking. Of course, polio related muscle weakness is not the only cause of any of these symptoms, so other medical problems should be excluded. Heart disease is a common cause of shortness of breath.

Patients who had respiratory or bulbar (speech and swallowing muscles) weakness during their acute polio illness are most likely to develop problems with breathing years later, but all polio survivors are at risk. Thus, I recommend a baseline pulmonary function test for any patient who has had polio. If the test is normal, it does not need to be repeated unless symptoms suggesting a breathing problem subsequently develop.

Pulmonary function tests are performed by a respiratory therapist in a standard laboratory that is part of all acute care hospitals. The test involves performing several maneuvers that all involve breathing or blowing forcefully into a tube. The test itself is not uncomfortable. Patients are often given a medication called a bronchodilator as part of the test to assess whether or not they have abnormal narrowing of the airways such as occurs in asthma and COPD. When assessing patients with muscle weakness, the FVC measurement and maximum inspiratory and expiratory pressure (MIP and MEP) measurements are most important. The MIP and MEP assess the strength of the muscles used for inspiration (breathing in) and expiration (blowing out). Good inspiratory muscle strength is necessary to fully inflate the lungs, and good expiratory muscle strength is necessary to cough up secretions. It is useful to also measure the FVC with the patient lying down because it may be less than it is sitting up. If any of the measurements discussed above are less than 80% of predicted (considered normal), the pulmonary function tests should be repeated regularly, usually annually unless symptoms dictate otherwise, to detect progression of breathing muscle weakness that may require treatment. Patients with an FVC or MEP less than 50% of predicted often benefit from treatment to assist their breathing muscles. In addition, patients with values above 50% of predicted will benefit from treatment if they are symptomatic.

The treatment for a low FVC is to provide mechanical assistance with inflating the lungs. This is done with non-invasive positive pressure ventilation (NIPPV) using either a bilevel positive airway pressure (BiPAP) machine or a portable ventilator to help blow more air into the lungs. The patient can use a mask over the nose or the mouth through which the air is delivered. Most commonly, patients are advised to use the machines at night to assist with their breathing. Oxygen is not needed unless the patient has a disease other than polio that affects the breathing. In fact, oxygen can be harmful in patients with breathing difficulties due to muscle weakness because it suppresses the body’s natural drive to breathe. A respiratory therapist familiar with NIPPV techniques is very helpful for teaching patients to use NIPPV and recommending a mask and machine settings that are comfortable.

Methods of assisting breathing, other than using NIPPV, exist but are less commonly used. These include a technique called glossopharyngeal breathing (frog breathing) and the use of body ventilators, similar to the old iron lung in mechanism of action, such as the portalung, chest shell and poncho. A detailed discussion of these devices is beyond the scope of this article.

For patients with weak expiratory muscles (low MEP), a machine called an in-exsufflator, ‘coughing machine,’ or Cough Assist (J.H. Emerson Co., MA) is useful. The device has a vacuum cleaner type of motor and is used to suck deep secretions or mucus out of the lungs. It is especially useful when patients have an upper respiratory tract infection (common cold); good secretion clearance helps prevent the develop-ment of superimposed pneumonia, a potentially serious medical problem that may require hospitalization.

In the past, polio patients have experienced difficulty getting their insurers to cover NIPPV equipment and the in-exsufflator. In January 2002, a new Medicare ruling was passed that created a specific reimbursement code for the in-exsufflator making it somewhat easier to obtain coverage for this piece of equipment. Also, according to Medicare guidelines, NIPPV equipment should be reimbursed for any polio patient with an FVC less than 50% of predicted or a MIP less than 60 cm H₂O (about 60% of predicted for most adults) without the requirement that a sleep study be performed or a low oxygen saturation be documented.

Preventing infection is important in patients with breathing muscle weakness. A pneumococcal vaccine-ion protects against one form of bacterial pneumonia and is only needed once. The influenza vaccination (flu shot) protects against common strains of the flu caused by influenza viruses. This should be received yearly.

There are no medications that can improve breathing difficulties primarily due to muscle weakness. Thus, inhalers and other medications commonly prescribed to treat asthma are not usually helpful to polio patients and may have adverse side effects.

Sleep apnea is a second type of breathing difficulty that may be experienced by polio survivors. Sleep apnea refers to brief episodes when one stops breathing during sleep. If the episodes are long enough, they usually wake the patient. Oxygen levels fall abnormally low during the episodes of apnea. Patients with sleep apnea often feel fatigued during the day and unrefreshed by their sleep. If sleep apnea is severe, serious medical complications such as heart rhythm disturbances, pulmonary hypertension, and congestive heart failure can develop. There are 2 major causes of sleep apnea in polio patients. The first is weakness of the throat muscles that allows the airway to collapse when one lies down. The second cause is a direct effect of the polio virus on nerve cells in the brainstem that help control breathing.

Sleep apnea should be suspected if quality of sleep is poor or if excessive daytime sleepiness occurs in a patient with normal pulmonary function tests. Family members of patients with sleep apnea may report loud snoring or actually may observe brief periods where the patient appears to stop breathing in his or her sleep.

Sleep apnea is diagnosed by undergoing a sleep study. Sometimes, sleep studies also are useful for determining if a patient with respiratory muscle weakness would benefit from NIPPV and/or for assessing how well a patient using NIPPV is being ventilated. Sleep studies are performed in a special laboratory where the patient is required to spend the night. During sleep, brain wave signals (EEG), limb movements, heart rhythm, and oxygen saturation are measured.

Once sleep apnea has been diagnosed, the treatment involves using a mask over the nose to blow air into the lungs with either a BiPAP or a continuous positive airway pressure (CPAP) machine. The airflow acts as a stent to prevent the airway from collapsing. CPAP is the standard treatment for patients with sleep apnea who do not have weakness of the breathing muscles. In polio patients who have both weakness of the breathing muscles and sleep apnea, a BiPAP machine is used to assist the weak muscles and prevent airway collapse.

Any polio survivor who feels excessively fatigued, sleeps poorly, or exhibits other symptoms discussed above should discuss with his or her physician whether or not an evaluation for breathing dysfunction is indicated. The appropriate treatment of polio related breathing problems can greatly improve the polio survivor’s fatigue resistance, energy level, and quality of life.

Abbreviations

ABG: arterial blood gas

BiPAP: bilevel positive airway pressure

COPD: chronic obstructive pulmonary

disease

CPAP: continuous positive airway

pressure

FVC: forced vital capacity

MEP: maximum expiratory pressure

MIP: maximum inspiratory pressure

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Reprinted from the Daytona Beach News-Journal, March 2003

Study finds weak gene

may cause binge eating

By Jeff Down, Associated Press

BOSTON – Binge eaters who say they can’t help it may be right.

A study suggests a weak gene, not feeble willpower, may be the cause for some people. The research may point the way to a future pill to tame their appetites.

The joint Swiss-German-Ameri-can study makes the strongest case yet that genetic mistakes can cause an eating disorder, researchers say. Traditionally, eating behavior has been viewed as complex and cultural in its causes.

“Willpower is not always important to reduce weight. Some people can by willpower. Some cannot, and I think these patients have a hard time,” said Dr. Fritz Horber, the leader of the binge-eating study at the Hirslanden Clinic in Zurich, Switzerland.

Researchers have been trying to understand the reasons for an epidemic of obesity, which raises the risk for heart disease, diabetes and many other ailments. About 30 percent of American adults are obese, up from 14 percent 25 years ago, according to government data. The surge is widely blamed on abundant high-calorie foods and sedentary lifestyles. However, some researchers have also begun to link several genes to obesity, implicating heredity as an important underlying factor. Increasingly, eating problems are thought to stem from a subtle interaction of life-style and multiple genes.

Probably the most common eating disorder, binge-eating strikes up to 4 million Americans, according to the National Institutes of Health. Binge-eaters, who are usually but not always overweight, frequently and compulsively stuff themselves – often in secret – and feel ashamed afterward.

FECPPSG Editor’s Note:- My mother always told me I had the “willpower” to do whatever I wanted EXCEPT to diet – now I know why. See Mom – it wasn’t my fault – it was one of the genes I got from either you or Dad…..

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"THE MOST IMPORTANT PART OF THE BODY”

My mother used to ask me what is the most important part of the body.
Through the years I would take a guess at what I thought was the correct
answer.
When I was younger, I thought sound was very important to us as humans, so I said, "My ears, Mommy."

She said, "No. Many people are deaf. But you keep thinking about it and I
will ask you again soon."

Several years passed before she asked me again. Since making my first attempt, I had contemplated the correct answer. So this time I told her, "Mommy, sight is very important to everybody, so it must be our eyes."

She looked at me and told me, "You are learning fast, but the answer is not
correct because there are many people who are blind."

Stumped again, I continued my quest for knowledge and over the years, mother asked me a couple more times and always her answer was, "No. But you are getting smarter every year, my child."

Then one year, my grandfather died. Everybody was hurt. Everybody was crying. Even my father cried. I remember that especially because it was only the second time I saw him cry.
My Mom looked at me when it was our turn to say our final good-bye to my
Grandfather. She asked me, "Do you know the most important body part yet, my dear?"

I was shocked when she asked me this now. I always thought this was a game between her and me. She saw the confusion on my face and told me, "This question is very important. It shows that you have really lived in your life. For every body part you gave me in the past, I have told you that you were wrong and I have given you an example why. But today is the day you need to learn this important lesson."

She looked down at me as only a mother can. I saw her eyes well up with
tears. She said, "My dear, the most important body part is your shoulder."
I asked, "Is it because it holds up my head?" She replied, "No, it is because it can hold the head of a friend or a loved one when they cry. Everybody needs a shoulder to cry on sometime in life, my dear. I only hope that you have enough love and friends that you will always have a shoulder to cry on when you need it."

Then and there I knew the most important body part is not a selfish one. It is sympathetic to the pain of others. People will forget what you said. People will forget what you did. But people will NEVER forget how you made them feel.

The origination of this letter is unknown, but it brings a blessing to everyone who passes it on. Good friends are like stars...You don't always see them, but you always know they are there.

Share this with a friend, we just did.

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DON’T FORGET OUR TENTH

ANNIVERSARY LUNCHEON ON

SUNDAY, JUNE 8th AT THE

RED LOBSTER ON I-92

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Respiratory Problems of People

with Neuromuscular Diseases

Transcribed from a video by Philip M. Gold, MD by Mary Correia

People with neuromuscular disease such as post-polio often need help with breathing, not because there is something wrong with the lungs, but because the respiratory muscles may be weakened or paralyzed and the chest wall is stiff and inelastic. If scoliosis is present, the work of breathing may be even harder. Other conditions such as chronic obstructive pulmonary disease (COPD) and sleep apnea (obstructive, central, or mixed) may also be occurring. And, of course, we are all getting older.

Astute family physicians will order a referral to a pulmonologist, preferably one experienced in neuromuscular disease. Pulmonologists specialize in all breathing-related disorders, however, most focus on more acute problems such as intensive care. The pulmonologist who focuses on neuromuscular diseases understands that the problem is due more to respiratory muscle weakness and the restrictive nature of the disease rather than the lungs themselves.

The poliovirus affected, in many different ways, the nerve cells in the lower brain (bulbar) and spinal cord that control the muscles of the body. Poliovirus does not damage the lung tissue or the nerves to the airway muscle. When the bulbar nerves were destroyed (bulbar polio), the muscles of the throat were weakened. This resulted in choking during eating and a diminished ability to cough. When the spinal nerves were affected (spinal polio), muscles of the arms and legs, and trunk muscles needed for breathing and for taking a deep breath for coughing were weakened. Polio survivors may have had some combination of bulbar and spinal polio, so there may be corresponding throat muscle and limb/respiratory muscle weakness. Involvement of the upper part of the spinal cord weakened the key breathing muscles – the diaphragm (key muscle for breathing in) and intercostal muscles. These muscles act as bellows to squeeze air in and out of the lungs. Additionally, accessory muscles such as shoulder and neck could also have been affected.

When weakened by polio, the work of breathing becomes harder, especially when a person is lying down. With each breath, the abdominal contents have to be pushed down, but when sitting upright, gravity assists the diaphragm by pulling the contents down. Polio survivors, especially those with scoliosis, compensate by breathing faster but more shallowly because they lack the muscle strength to stretch a stiff rib cage. They may also have smaller lung volumes that further reduce respiratory muscle efficiency and drastically increase the work of breathing. This can lead to underventilation and respiratory failure.

Respiratory muscle weakness contributes to sleep-disordered breathing. During REM (rapid eye movement) sleep, relaxation of many voluntary muscles, including the shoulder, chest, and abdominal muscles, often occurs. And, these muscles are used to assist breathing when the diaphragm is weak. Consequently, a weak diaphragm has difficulty sustaining adequate breathing, especially when lying down. This leads to a decreased level of oxygen in the blood which can extend into non-REM sleep and contribute to arousals, inducing sleep fragmentation, and decreasing the amount of time in REM sleep. The quality of sleep deteriorates.

SYMPTOMS TO LOOK FOR:

Need to sleep sitting up (orthopnea)

Retention of carbon dioxide (CO2):

- morning headaches;

- poor concentration and impaired intellectual function

Sleep disturbances:

- not feeling rested in the morning;

- sleepiness during the day;

- dreams of being smothered and/or nightmares;

- restless and/or interrupted sleep;

- fatigue or exhaustion from normal activities; snoring

Claustrophobia and/or feeling that the air in the room is somehow bad

Anxiety

Difficulty in speaking for more than a short time

Quiet speech with fewer words per breath

Use of accessory muscles to breathe

Weak cough with increased suscep-tibility to respiratory infections and pneumonias

Cor pulmonale (right-sided heart failure) can occur in post-polio and in other diagnoses, such as COPD. In both, the low oxygen level can cause pulmonary hypertension and collection of fluid in legs.

Individuals who used an iron lung, or barely escaped one, during the acute phase should be aware of potential problems. Those survivors who did not need ventilatory assistance during the acute phase, but who had high spinal polio resulting in upper body weakness and/or diaphragm weakness, and those with scoliosis (sometimes referred to as chest wall deformity) may also be at risk. Also, a diminished lung capacity happens to everyone as they age. When there are nighttime breathing problems in a person with neuro-muscular disease, such as post-polio, they are more likely due to respiratory muscle weakness, rather than obstructive sleep apnea (OSA). However, some individuals may have only OSA while others may have both respiratory muscle weakness and OSA.

Sleep studies are usually performed in a sleep laboratory over one or two nights to assess sleep disorders (such as sleep apnea). Studies are recommended for an individual exhib-iting signs of underventilation during the night. The person’s spouse is frequently the first one to notice sleep disturbances, such as apnea, snoring, etc. Defined as the lack of breathing through the nose and mouth for at least ten seconds, sleep apnea can be obstructive or central or mixed. Obstructive sleep apnea (OSA) occurs when tissues in the throat collapse and block airflow in and out of the lungs during sleep, although efforts to breathe continue. Central apnea occurs when the brain fails to send appropriate signals to the body to initiate breathing. There is neither airflow nor chest wall movement. In sleep apnea, breathing ceases, oxygen in the blood decreases, arousal occurs, sleep ends, and breathing resumes. The individual then drifts back to sleep and another apnea occurs, with this cycle continuing throughout the night, resulting in hundreds of arousals from sleep.

The alveoli in the lungs are tiny air sacs at the end of the respiratory tract where gas exchange with the blood occurs. In underventilation (medically known as chronic or global alveolar hypoventilation),the saturation of oxygen in the blood falls due to increased carbon dioxide. Normally the alveoli should clear most of the CO2 out with each breath. Instead, the CO2 accumulates (called hypercapnia), and thus there is decreased room in the alveoli for oxygen. Hypercapnia and decreased oxygen saturation are the hallmarks of underventilation or hypoventilation. The signs and symptoms of underventilation usually appear first during sleep. Some people seem to suddenly experience life-threatening respiratory failure due to CO2 accumulation (hypercapnia). They may not have been aware of gradually increasing symptoms and signs, particularly since they are often not physically active nor regularly monitored with simple pulmonary function tests. Polio survivors may think that they are breathing fine until an upper respiratory infection, which makes breathing in harder for everyone, causes serious problems, partially due to an ineffective cough and the inability to eliminate secretions.

OSA at first occurs when individuals sleep on their backs, but eventually apneic episodes are present with any sleep position. A number of factors make snoring and apnea worse, such as obesity and nasal obstruction. Smoking causes the lining of the upper airway to swell, alcohol and sedative drugs cause the muscles in the back of the upper airway to relax, and excessive weight decreases the size of the upper airway.

Our ability to keep our airways open is based, in part, on the effectiveness of our cough which is a sudden expiration of air to clear out mucous from our airways. In people who have had polio, the muscles may not be strong enough to force out stuff. A weak cough can lead to poor secretion removal, increased respiratory infections, and pneumonia. Retained secretions in people who have impaired coughing ability can turn a common cold into pneumonia. To improve cough, there are two forms of assisted coughing. Manually assisted coughing involves another person administering a thrust to the chest and abdomen (mimics the Heimlich maneuver) of the individual with neuromuscular disease immediately after that individual takes a big breath. “Huffing”, a practice of expelling air from the lungs can help move secretions. Mechanically assisted coughing is available with certain devices such as the Insufflator/ Exsufflator (Ed. Note: I couldn’t find any information on this device but could on the Cough Assist) which is effective in keeping airways clear.

Polio survivors complaining of shortness of breath should have pulmonary function tests to determine the efficiency of their breathing ability. However, PPS is not always the cause of shortness of breath which can also be caused by cardiac function or other lung diseases. If you meet the criteria for assisted ventilation – low oxygen and high carbon dioxide retention at night – getting insurance and providers to pay for the equipment is much simpler. Most people can get by during the day if they have ventilation at night.

Sleep apnea is best treated with the use of a continuous positive pressure airway (CPAP) device to push the tongue out of the way and keep the airway open during sleep. CPAP stands for Continuous Positive Airway Pressure. Air flows continuously into the airway via the nose with use of a nasal mask. CPAP keeps the airway open, but does not adequately assist respiratory muscle activity. CPAP is primarily used to treat obstructive sleep apnea, and thus is normally used only at night during sleep. Bilevel pressure devices continuously deliver air, but the inspire-atory pressure can be adjusted separately from the expiratory pressure. Bilevel (BiPAP) devices are often used for respiratory muscle weakness, also with a face or nasal mask or nasal pillows, and, like CPAP, used mainly at night. The goal in terms of ventilating patients is to make them more comfortable. To do this, ventilation is increased gradually. Once the patient is comfortable with the ventilation process, then blood gases are tested to fine tune the settings.

RELATED ARTICLES (call Mary at 661-833-0634 for copies)

“Breathing Problems of Polio Survivors”, Polio Network News, Spring 2001 Vol.17,No. 2

“Assistance for Breathing Problems of Polio Survivors”, E.A. (Tony) Oppenheimer, MD, FACP, FCCP, can be found at http://www.skally.net/ppsc/ breathe.html.

IVUN Resource Directory compiles a list of pulmonologists and respiratory health professionals who are knowledgeable about and committed to home care and long-term mechanical ventilation. It is available at http://www.post-polio.org/ivun or in hard copy from IPN.

(Ed. Note: None are available in Kern County but there are several in the Los Angeles area. If you don’t have access to the internet, call me and I will get you a list – Mary 661-833-0634.)

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This was sent to me a number of times by e-mail friends. Now I would like to pass it on to you….

JUST FOR TODAY….

Today...I wish you a day of ordinary miracles –

A fresh pot of coffee you didn't make yourself.

An unexpected phone call from an old friend.

Green stoplights on your way to work or shop.

I wish you a day of little things to rejoice in...

The fastest line at the grocery store.

A good sing along song on the radio.

Your keys right where you look.

I wish you a day of happiness and perfection –

little bite-size pieces of perfection that give you the funny feeling that the Lord is smiling on you,

Holding you so gently because you are someone special and rare.

I wish You a day of Peace, Happiness and Joy.

They say it takes a minute to find a special person, an hour to appreciate them, a day to love them, but then an entire life to forget them.

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The following came from a “Trivia” column in the Ormond Beach Pennysaver, March 12th, 2003. I thought it interesting enough to reprint here. Barbara

The theory of immunization, smallpox immunization in particular, was known to Chinese doctors more than 700 years before its discovery by Edward Jenner. In order to immunize a child against smallpox, a doctor would take a pustule from the patient, pulverize it, and blow the powder into the child’s nose through a specially-molded tube.

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The following information has been sent to me several times over the past few months. I feel it is important enough to place in our newsletter as not everyone has (or wants) a computer and, therefore, does not have e-mail. We’ll call this article:-

PRECAUTIONS

An attorney sent the following out to the employees in his company:

The next time you order checks have only your initials (instead of first
name) and last name put on them. If someone takes your check book they
will not know if you sign your checks with just your initials or your first name but your bank will know how you sign your checks.

When you are writing checks to pay on your credit card accounts, DO NOT put the complete account number on the "For" line. Instead, just put the last four numbers. The credit card company knows the rest of the number and anyone who might be handling your check as it passes through all the check processing channels won't have access to it. Put your work phone # on your checks instead of your home phone. If you have a PO Box use that instead of your home address. If you do not have a PO Box use your work address.
Never have your SS# printed on your checks (DUH!) -- you can add it if it is necessary. But if you have it printed, anyone can get it.

Place the contents of your wallet on a photocopy machine, do both sides
of each license, credit card, etc. You will know what you had in your wallet and all of the account numbers and phone numbers to call and cancel. Keep the photocopy in a safe place. I also carry a photocopy of my passport when I travel either here or abroad. We've all heard horror stories about fraud that's committed on us in stealing a name, address, Social Security number, credit cards, etc. Unfortunately I, an attorney, have firsthand knowledge because my wallet was stolen last month. Within a week, the thieve(s) ordered an expensive monthly cell phone package, applied for a VISA credit card, had a credit line approved to buy a Gateway computer, received a PIN number from DMV to change my driving record information online, and more.

But here's some critical information to limit the damage in case this happens to you or someone you know: We have been told we should cancel our credit cards immediately. But the key is having the toll free numbers and your card numbers handy so you know
whom to call. Keep those where you can find them easily. File a police report immediately in the jurisdiction where it was stolen, this proves to credit providers you were diligent, and is a first step toward an investigation (if there ever is one). But here's what is perhaps most important: (I never even thought to do this). Call the three national credit reporting organizations immediately to place a fraud alert on your name and Social Security number. I had never heard of doing that until advised by a bank that called to tell me an application for credit was made over the Internet in my name. The alert means any company that checks your credit knows your information was stolen and they have to contact you by phone to authorize new credit. By the time I was advised to do this, almost two weeks after the theft, all the damage had been done.

There are records of all the credit checks initiated by the thieves'
purchases, none of which I knew about before placing the alert. Since then, no additional damage has been done, and the thieves threw my wallet away this weekend (someone turned it in). It seems to have stopped them in their tracks. The numbers are:

Equifax: 1-800-525-6285

Experian(formerlyTRW) 1-888-397-3742
Trans Union: 1-800-680-7289

Social Security Administration

(fraud line): 1-800-269-0271

We pass along jokes on the internet; we pass along just about everything. Pass this information along. It could really help someone you care about.

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The following article was written by one of our members, Marion Schoeller, who I met when I first moved to Central Florida and attended the Post-Polio support group in Orlando. Marion moved from the Orlando area to California about 4 years ago, and is now back, living right here in Daytona Beach. WELCOME BACK, Marion.

The Daimler/Chrysler Automobility

Reimbursement Program And Me.

I purchased my Chrysler PT Cruiser, "dream car" in November, 2002 while I was still a California resident.

My two previous vehicles had been wheelchair accessible vans.

I have a Silver Star two-way entry, swing away rear, exterior lift connected to a 2 inch slider hitch. It was shipped to California from Medford, Oregon. It weighs 95 pounds and can lift a maximum scooter weight of 325 pounds. Both the hitch and the lift were installed in Hesperia, CA by Desert Automotive Muffler and Hitch.

I printed out the automobility program guidelines and the application form from the Daimler/Chrysler website at www.automobility.daimlerchrysler.com. The adaptive equipment must be installed within 6 months of vehicle purchase or lease. The claim must be submitted to Automobility Headquarters within 60 days of complete installation of adaptive equipment.

I completed my portion of the form as well as having the hitch adaptive equipment company) and the Chrysler dealer completed their portions. I was also required to send a copy of the adaptive equipment company's itemized paid invoice along with the form. For my lift, a doctor's prescription was not required. Medicare would not pay for it anyway. But I tried.

I received my $750 reimbursement recently. It was well within the 6 weeks (as promised) of my mailing all the required paperwork to Troy, Michigan. Since my Pt is not a full-sized van, truck or SUV, I received the $750 reimbursement instead of the $1000 reimbursement.

So far I can vouch for the reliability of the lift and the PT Cruiser. I drove the PT with my 3 wheeled Bruno scooter on the back from Southern California to the East coast of Florida in February. They were trouble free. I wish I could say the same for myself.

“Keep on Cruisin!” –

Marion Schoeller

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WEEKEND AT

UNIVERSAL STUDIOS

Well, I spent a weekend at Universal Studios with my daughter and her family. We stayed at the Hard Rock Hotel – my handicap room was most accessible (it even had two beds, which as you know is a novelty), it had a roll-in shower but nothing to sit on so you have to ask for a shower chair. Only problem I found was that the outlets were not fully accessible and as I neglected to bring an extension cord with me, when I requested one from housekeeping I was told they didn’t have one – sooooo, I simply plugged my scooter into an outlet in the hallway (right outside of my door).

It’s very easy to get to the two Universal Studio theme parks (Nickel-odeon and/or Islands of Adventure) by simply walking through a gate at the back of the Hard Rock Hotel straight through to the parks – less than a 5 minute walk. In fact, my daughter said it was much quicker than taking the water taxi or the shuttle.

Inside the two theme parks I found the personnel most considerate and accommodating. Basically, every-thing was accessible. I found that there are more and more people renting wheelchairs and electric scooters at the parks – However, what bothered me was when saw the man in the chair/scooter at one point in the park and later on saw the woman in the chair/scooter. Don’t these people realize how fortunate they are NOT to need a chair or a scooter???? Also some of them had children with them – what kind of impression does this give to their children????

Oh, well – funny thing happened when we were leaving Islands of Adventure ---- seems they are now using Electric Mobility Rascals (which is what I have) and when I started through the EXIT gate the attendant started to tell me that “You can’t take that out of the Park…” I told her it was my own scooter and she apologized….

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Polio Vaccinations Begin in India on a Grand Scale

Eradication campaign aims for 165 million

By Neelseh Misra

The Associated Press -- April 7, 2003

NEW DELHI, India - Health workers in India knocked on millions of doors Sunday in a campaign to vaccinate 165 million of the country's children against polio this year - the largest immunization drive ever against the disease.
    The workers, who themselves numbered in the hundreds of thousands, hoped to reach 98 million children in 10 Indian states on Sunday alone, said Savita Varde Naqwi, a spokesman for UNICEF. Other rounds were planned for later this year, she said.
They traveled to remote villages and urban slums where the virus is easily spread due to crowded conditions and poor sanitation. Teams of health workers also visited airports, and railroad and bus stations.
    The main target was Uttar Pradesh, India's largest state, which accounted for 66 percent of the 1,556 new polio cases found last year, Naqwi said. Six of every 10 Indian children under 5 - the age group most vulnerable to the disease - live in the state.
    Polio strikes the central nervous system, causing paralysis and sometimes death. It is transmitted through food or water contaminated by the feces of an infected person.
    Once a major problem, the disease has disappeared from much of the planet and the World Health Organization hopes to eradicate it completely by 2005. But an alarming increase in cases in Uttar Pradesh has prevented the UN agency from reaching that goal, officials said.
    "Nearly two-thirds of all the polio cases worldwide are found right here, in Uttar Pradesh," said Gro Harlem Brundtland, the WHO's director-general. She spoke to reporters in Lucknow, the state's capital, during a visit aimed at boosting the anti-polio campaign.
    India's inability to contain the disease stems from a number of factors, including a lack of interest among parents and officials and ineffective vaccines provided by the government, critics say.
    "Officials and doctors will have to think about why children, who had been brought under the polio coverage umbrella, fall prey to this dreaded disease," Uttar Pradesh Health Minister Phagu Chauhan told The Associated Press.
    Muslims, India's largest minority, have also resisted the campaign, fearing that the vaccines are part of a government plan to limit the Muslim population in this Hindu-majority nation.
    "There is a myth among Muslims that polio vaccine turns children impotent. This false propaganda is keeping the Muslims away from the polio booths," said Girish Chandra Chaturvedi, a senior Uttar Pradesh health official.
    On Sunday, helicopters dropped pamphlets in predominantly Muslim areas urging parents to take their children to the nearest polio centers, saying their fears about the vaccines were unfounded.
    Naqwi, the UNICEF spokesman, said Muslim religious leaders and academics were issuing appeals for Muslims to take part.
    Several top cricket players, a major sport in India, have also promised to promote the immunization cause. "That is working quite nicely," she said.
    India is one of seven nations where polio is still endemic. The others are Nigeria, Niger, Egypt, Somalia, Afghanistan and Pakistan. The last outbreak in the United States occurred in 1979.
    To be declared polio-free, a country must have no new cases for three years. The next round of immunizations in India will be held on June 1.

http://www.gomemphis.com/mca/nation_and_world/article/0,1426,MCA_454_1869749,00.html

Reprinted from e-mail sent by Kay Sweeney, of the Arizona PPSG

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The following was sent via e-mail from GINI Headquarters in St Louis on April 17, 2003

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International Polio Network (IPN), coordinated by Gazette International Networking Institute (GINI), has received a grant from SPIN, a charitable organization in Chicago, Illinois. The grant for $3,000 was awarded to help individuals purchase a scooter. In order to assist the greatest number of individuals, IPN will provide up to $500 per applicant. If you are a polio survivor or you use a ventilator, and you and/or your insurance are unable
to meet the complete cost of the scooter you plan to purchase in 2003, please contact Justine Craig-Meyer (info@post-polio.org) at IPN for an application. There is no deadline for applying and the payments will be disbursed as eligible and qualified individuals apply.

Gazette International Networking Institute coordinator of International Polio Network (IPN) Int'l Ventilator Users Network (IVUN)

4207 Lindell Blvd #110 Saint Louis, MO 63108

info@post-polio.org www.post-polio.org

314-534-475 314-534-5070 fax

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

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

MAY / JUNE 2003

WE WISH ALL OUR FRIENDS

A FLOWER FILLED AND LOVING MOTHER’S DAY

A SUNNY MEMORIAL WEEKEND

-and-

A FANTASTICALLY LOVING FATHER’S DAY

MEETING NOTICE

Permission has been granted from Dr. Krivickas for us to reprint the below article, originally printed in the Greater Boston Post-Polio Association “TRIUMPH”, Winter 2003

BREATHING PROBLEMS CAUSED

BY POST-POLIO SYNDROME

Lisa S. Krivickas, MD

Abbreviations

Support Group I belong to:- ____________________________________________