CONTENTS

Page

From Barbara 1

Post-Polio Update, May 2003 2

The Top 10 Secrets to a Stress-

Free Personal Life 7

The Magic Food – Eat a Banana 8

Important Warning – #77 11

Never Drive in the Rain with

Your Cruise Control On 11

That Golden Age 12

Dues 13

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FROM BARBARA -

It was nice seeing everyone at our September meeting after the long summer recess.

Well, I’m back from my, hopefully, last drive to Long Island. I welcomed my newest grandchild, Gavin Jerome, into the world on September 30th -- I might be a little prejudiced, but to me he was the most beautiful little boy I’ve seen since my grandson, Joseph, was born.

This time when I drove up I decided to stop overnight and pulled into a Motel 6, basically because I thought I could just enter from the outside and not have to pull out my scooter – well, after registering I drove over to the door number only to find that in addition to the curb, there were 3 steps to go up to the “handicapped” room with no railing (naturally) to hold on to. So, back I go to the office to request a refund explaining the problem. The clerk then told me I could “walk” over to the room. When I told her I couldn’t walk that far, all she said was “oh”, and gave me a refund. I then went around the corner to a Comfort Inn, pulling out the scooter that I was trying to avoid using, as ALL their rooms are inside. I will say this, their handicapped room was one of the best that I’ve been in.

On the way back down, I drove straight through – I must have been a truck driver in a previous life as I have absolutely no problem in doing that.

Gavin’s christening is November 23rd, and I’m flying up.

That’s it for now…… Barbara

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Post-Polio Update, May 2003

With Susan L. Perlman, M.D.

Associate Clinical Professor of Neurology

UCLA Medical Center, Los Angeles, California

Reported by Mary Clarke Atwood

Editorial assistance by V. Duboucheron

and S. L. Perlman, M.D.

This report is based upon Dr. Perlman’s presentation in Newport Beach, California to the Post-Polio Support Group of Orange County, on May 18, 2003. It includes Drugs to Use with Caution, Evidence-Based Medicine, PPS Facts, Research Highlights, and Practical Management Strategies including information on pulmonary dysfunction and use of oxygen.

Fear Factor

Or, why is it so hard to find a doctor who knows about post-polio syndrome and is willing to treat it? Because one of the first things physicians are taught is, do no harm. A physician might tell a PPS patient, “I’m not the right kind of specialist.” Or if the physician fears there is something particular about this disease that he doesn’t know and he might recommend something wrong. Or he might say that there is no evidence-based treatment that he can justify recommending. With the abundance of information currently available on the Internet, a physician can quickly educate himself about PPS.

Caution Signs

1. Post-Polio Muscle Atrophy (PPMA), often referred to as PPS, weakens nerve muscle communication and performance. Therefore drugs that affect those areas should be used with caution.

2. Polio survivors and the professionals who treat them need to increase their knowledge regarding exercise. Pushing activity or exercise to the point of pain or fatigue will make PPMA worse. Repetitive actions are the worse offenders. Additional information on exercise follows, in the section “Practical Management Strategies for PPS”, #1 Exercise.

3. Appropriate adaptive equipment and bracing will not cause more weakness when used properly. Do not be afraid to use adaptive equipment with muscles that are already weak. This equipment will actually make a person stronger by relieving stress on the muscles.

4. Don’t blame everything on polio; polio survivors are not immune to other conditions and/or diseases.

Drugs to Use with Caution

These central nervous system depressants can increase feelings of fatigue:

· Narcotics

· Sedatives

· Tranquilizers

· Sleeping pills

· General anesthetics, e.g. ether

· Alcohol

Muscle relaxants:

· Valium

· Soma

· Robaxin

· Parafon Forte

· Norgesic, Norflex

· Flexeril

If a person already has muscle fatigability and weakness, he may feel weaker if he begins a muscle relaxant similar to those listed above for pain relief. Depolarizing drugs (used in surgery) may cause some prolonged weakness when first waking up in the recovery room. Discuss this with the anesthesiologist in advance.

· Quinine (anti-cramp medicine)

· Quinidine

· Procainamide

The preceding two muscle relaxants are heart medications that do relax muscles. If you need these drugs for a medical condition, be an alert consumer and monitor your condition.

· Beta-blockers, e.g. propranolol, are known to cause fatigue and tiredness, but people do tolerate them.

· Calcium channel blockers, e.g. verapamil or Calan, may be associated with muscle fatigue.

· Diuretics (water pills) can deplete the body of potassium and cause the muscles to feel more tired.

· Laxatives can also deplete the body of potassium if used frequently.

· Kaopectate can cause changes in muscle performance.

· Cholesterol-lowering drugs – statins, e.g. Lipitor, Mevacor, etc.

In healthy individuals taking a statin there is a 10 – 20% chance that person will have muscle pain, cramping, or feelings of weakness. Someone who has a neuromuscular problem can take these drugs, but needs to be aware and alert to possible side effects.

Evidence-Based Medicine and PPS

There is an enormous body of literature that shows that rehabilitation is able to stop the progression of symptoms and improve function and quality of life in patients with PPMA. Rehabilitation strategies include therapeutic exercise, conditioning exercise, energy conserva-tion, adaptive devices, and bracing. Improvement in more general areas (pain management, pulmonary or sleep interventions, weight and nutrition con-cerns, stress, or depression) can result in overall improvement for the indivi-dual’s specific post-polio symptoms.

On the downside, aging and motor unit losses are important contributing factors in PPMA—with no treatments proven to block their effects. New drug trials have not yet shown statistically significant benefits. Possible restorative therapies such as growth factors or stem cells are in the very early stages of development. Since the exact causative mechanisms of PPS are not yet fully known, curative therapies are delayed.

Research Highlights of 2002-2003

1. At the April 2003 American Association of Neurologists meeting, Trojan et al. confirmed other studies that showed only very slow changes in PPMA. They reported no change in isometric strength, subjective fatigue, or quality of life over a one-year period. However, during a period of five to ten-years, some things do get worse. This reinforces the validity of studies that show some improvement with various post-polio management strategies.

When a person begins a new strategy, Dr. Perlman suggests monitoring his/her own performance by the day or week and then reporting back to the physician after six weeks.

2. Last year Jubelt et al. reported that a mouse could be given acute polio and be allowed to recover; the EMG measurements that followed were consistent with recovered polio. At the April 2003 meeting it was reported that 1/3 of those recovered mice developed new weakness after a year. This correlated with progressive motor neuron degeneration.

The good news is that now a good animal model for PPS is available; it can be used for testing new drugs.

3. The long-awaited study of nervous system inflammation as a cause of PPMA was reported by Gonzalez H, Khademi M, Andersson M, Wallstrom E, Borg K, and Olsson T. at the Karolinska Hospital in Sweden, in J Neurol Sci 2002, 205:9-13. It was reported that there are cells in spinal fluid of patients with PPS that are producing inflammatory chemicals (“cytokines”) similar to those seen in multiple sclerosis spinal fluid and blood. These may be generated by reactions with old poliovirus debris that is still there.

In an editorial response to the Gonzalez report, Marinos Dalakas, MD, a premier researcher in post-polio and other neuromuscular diseases, agrees that these cytokines may cause progressive toxicity to nerve cells and some of them can directly cause fatigue and excessive sleepiness. But before drugs for MS are tried in PPS, studies must first show that cytokines are not increased in polio survivors without PPS, that they persist or increase in those with PPS, and that they correlate with new PPS symptoms.

Noticeably Absent from Research

Nothing new has been reported relating to Bruno’s studies of the role of poliovirus-induced lesions of the Reticular Activating System in the genesis of “brain fatigue” and cognitive problems in PPS.

One wonders how the hyperintense spots seen on MRI in patients reporting severe fatigue (as opposed to none in patients with mild fatigue) might relate to brain inflammation from the cytokines – and what would happen to those spots after treatment with MS drugs. The stage is set for new drug trials on brain inflammation.

Practical Management Strategies for PPS

1. Exercise

People are still confused and worried about the proper use of exercise. Any therapeutic exercise can be used (strengthening, conditioning, aerobic, aquatic) as long as it doesn’t cause pain or fatigue that persists for more than 1 or 2 hours. Exercise programs should be custom-designed with respect to each person’s strengths and weaknesses while minimizing the number of repetitions. Too much exercise is not good; overdoing can increase PPS symptoms. Aggressive physical therapy could cause harm.

It is important to educate your doctors and therapists. The March of Dimes PPS brochures are accurate, easy to read, and available at

http://www.marchofdimes.com/files/PPSreport.pdf.

Post-Polio Health International, 4207 Lindell Boulevard, #110, Saint Louis, MO 63108, formerly GINI, is also distributing print copies of the brochures. One free copy is available and bulk quantities are available for a minimal shipping and handling fee.

The Spring 2003 issue of "Post-Polio Health" (Vol. 19, No. 2), formerly known as "Polio Network News”, includes “A Statement about Exercise for Survivors of Polio”. This position paper was developed and endorsed by the twenty-nine physicians on the Medical Advisory Committee of Post-Polio Health International.

http://www.post-polio.org/ipn/pnn19-2.html

2. Progress

What is the best way to follow a patient’s progress? Annual doctor visits review the level of symptoms and benefits of symptomatic treatment, as well as strength testing to look for areas of improvement or worsening. Tests used to make the diagnosis of PPS (e.g. EMG) do not need to be repeated unless some-thing is getting worse or something new is happening. EMG is not a good way to follow a person’s progress.

3. Oxygen

Should PPS patients use oxygen? There are conflicting opinions on this.

In a recent article Dr. Julie Silver stated that pulmonary specialists might order pulmonary function tests, sleep studies, or blood oxygen tests to help determine the best treatments for weak breathing muscles – ventilator, CPAP, BiPAP, or pulmonary rehab. Oxygen might be ordered.

Dr. Perlman said that the good thing about supplemental oxygen, for a PPS patient complaining about fatigability of breathing and shortness of breath, is that the breathing muscles wouldn’t have to work as hard to get oxygen. Oxygen could be considered an “anti-fatigue device” for someone who has a weak diaphragm on one side or scoliosis that restricts some chest movement, and might be overusing his neck muscles to help with breathing. A small amount of oxygen at appropriate times (not all day, but just at certain times of the day) would let the person breathe with a little less effort, yet still get the oxygen he needs. It is like giving the neck muscles a brace, so they do not have to work as hard. So in certain individuals, oxygen can be a good energy conservation device for breathing muscles.

However, if a person’s breathing is weak and his oxygen level is low, but in addition he is not breathing out enough carbon dioxide, then supplemental oxygen could cause more problems. It would slow his breathing for the purposes of getting oxygen in, but the slower breathing would result in less carbon dioxide being removed. The carbon dioxide would build up further in his bloodstream and could cause decreased alertness, even coma.

Oxygen is a double-edged sword. Not that it can never be used, but when it is used, the physician needs to know how the person’s breathing is functioning — whether or not his carbon dioxide levels are building up. Not everybody who has increased carbon dioxide has shortness of breath, so testing for carbon dioxide levels in blood may be the only way to determine if oxygen can be used safely.

· Sometimes it is just an oxygen problem, so then oxygen can be used periodically throughout the day very safely.

· Some people who have had increased carbon dioxide in their blood for years, might stop breathing altogether with only a small amount of supplemental oxygen.

A patient needs to have a pulmonologist provide guidelines for this – not a neurologist, not a general physician; this is in the area of pulmonary medicine.

4. Pulmonary Dysfunction in PPS

Late-onset pulmonary dysfunction of 2% per year, from a compensated baseline (the stable forced vital capacity the patient has had since his recovery from acute polio), is associated with a decline in Forced Vital Capacity (maximal amount of air a person can inhale in one breath).

Ventilatory failure occurs because of neuromuscular decline or increasing spine deformity, but secretion build-up, aspiration, and obstructive sleep apnea can also contribute, leading to fatigue, excessive daytime sleepiness, and pulmonary complaints.

There is a greater risk of progressive loss of lung compliance (flexibility of the lung tissue to expand when a person breathes) due to reduced ability to take deep breaths and the effects of secretions. Small changes (mucous plugs, infection, dehydration, excessive fatigue) can lead to acute respiratory failure. Chronic alveolar hypoventilation (“under-breathing”) may be worse at night even without obstructive sleep apnea.

Management goals are to:

· Maintain normal alveolar ventilation (getting enough oxygen and carbon dioxide in and out of the lungs) around the clock

· Provide clearance of airway secretions

· Improve pulmonary compliance (more flexible lung tissue moves more air)

· Address the factors causing sleep disordered breathing (central or obstructive)

· Establish an individualized pulmonary rehabilitation program

Two-Day Conference

National Institutes of Health is sponsoring a two-day conference “Physical Disabilities Through the Lifespan” in Bethesda, Maryland on July 21-22, 2003. It will involve scientists, clinicians, patients, and policy makers in order to identify gaps in knowledge and treatment of those aging with a disability, as well as public policy imperatives. Post-polio will be featured on Day 2. The session summaries will be posted as they are completed.

http://www.nichd.nih.gov/about/ncmrr/disabilities/index.htm

Mary Clarke Atwood

Reprint permission must be obtained directly from

Rancho Los Amigos Post-Polio Support Group

RanchoPPSG@hotmail.com

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The following was sent to us by one of our members – Beverly Schroll – thanks Bev….

~~ THE TOP 10 SECRETS TO A

STRESS-FREE PERSONAL LIFE ~~

1. Create boundaries.

Boundaries reflect what other people can or cannot do or say to you, for instance, "I am only able to listen to you when you speak calmly without shouting." This will leave you feeling protected from hurtful situations.

2. Ask people to help you.

Choose 3 things today that you can receive help with and ask for it. You will have less to cope with and get done, can stop being a hero who does it all and leave the other person feeling important with a sense of responsibility.

3. Quiet your mind at least once a day.

Concentrate on your breathing and let all of your thoughts go. You will then be able to listen fully to what your body is telling you and act more on your intuition and what's right for you.

4. Explore and experience your feelings fully.

For example, when you feel sad allow yourself to be sad rather than try to pick yourself up and pretend it doesn't manner. It's okay to feel sad, happy, frustrated...accepting your feelings rather than fighting them helps you to know where in your life to make changes and reduce stress.

5. Plan a fun activity every day.

It can be for just 5 minutes or as long as you want such as watching a comedy, dancing, a water-pistol fight with friends.... You will have something to look forward to each day, keeping fun and balance in your life.

6. Communicate how you feel in a non-threatening manner.

Use the statement "I feel...." Such as, "I feel unimportant when you don't telephone me during the day." You will feel less conflict as you are owning your feelings and talking about the other person's behavior, not them personally.

7. Write in your journal every day.

Find a time that works best for you, maybe first thing in the morning or last thing at night and write about your thoughts, feelings, ideas, stressful situations.... You will safely explore
and clarify your life and priorities, enabling you to make choices and to take action based on these.

8. Take time for yourself on a regular basis.

Perhaps you might take a long bath, read, have quiet time alone or whatever feels good for you. You will feel good about yourself and more relaxed and energized to enjoy your life more fully.

9. Don't be demanding.

Use the words "Would you..." when asking for things. For example, "Would you look after my plants while I am on holiday?" You are more likely to achieve a 'yes' as the other person is left feeling capable and having a choice rather than being told to what to do.

10. Show your appreciation.

Every day tell someone that you appreciate them, "I appreciate the way you've supported me through this emotional time." We all need to feel appreciated and showing appreciation to others will allow you to live in a more loving way.

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Another interesting article sent to us by Beverly Schroll.

THE MAGIC FOOD….

Eat a Banana

After Reading THIS, you'll NEVER look at the Banana in the same way again!!

Doctors - Home Remedy If you want a quick fix for flagging energy levels there's no better snack than a banana. Containing three natural sugars - sucrose, fructose and glucose - combined with fiber a banana gives an instant, sustained and substantial boost of energy. Research has proven that just two bananas provide enough energy for a strenuous 90 minute workout. No wonder the banana is the number one fruit with the world's leading athletes. But energy isn't the only way a banana can help us keep fit. It can also help overcome or prevent a substantial number of illnesses and conditions making it a must to add to our daily diet.

Depression: According to a recent survey undertaken by MIND amongst people suffering from depression, many felt much better after eating a banana. This is because bananas contain tryptophan, a type of protein that the body converts into serotonin known to make you relax, improve your mood and generally make you feel happier.

PMS: Forget the pills - eat a banana. The vitamin B6 it contains regulates blood glucose levels, which can affect your mood.

Anemia: High in iron, bananas can stimulate the production of hemoglobin in the blood and so helps in cases of anemia.

Blood Pressure: This unique tropical fruit is extremely high in potassium yet low in salt making it the perfect to beat blood pressure. So much so, the US Food and Drug Administration has just allowed the banana industry to make official claims for the fruit's ability to reduce the risk of blood pressure and stroke.

Brain Power: 200 students at a Twickenham (Middlesex) school were helped through their exams this year by eating bananas at breakfast, break and lunch in a bid to boost their brain power. Research has shown that the potassium packed fruit can assist learning by making pupils more alert.

Constipation: High in fiber, including bananas in the diet can help restore normal bowel action, helping to overcome the problem without resorting to laxatives.

Hangovers: One of the quickest ways of curing a hangover is to make a banana milk shake, sweetened with honey. The banana calms the stomach and, with the help of the honey, builds up depleted blood sugar levels, while the milk soothes and re-hydrates your system.

Heart burn: Bananas have a natural antacid effect in the body so if you suffer from heart burn, try eating a banana for soothing relief.

Morning Sickness: Snacking on bananas between meals helps to keep blood sugar levels up and avoid morning sickness.

Mosquito bites: Before reaching for the insect bite cream, try rubbing the affected area with the inside of a banana skin. Many people find it amazingly successful at reducing swelling and irritation.

Nerves: Bananas are high in B vitamins that help calm the nervous system.

Overweight and at work? Studies at the Institute of Psychology in Austria found pressure at work leads to gorging on comfort food like chocolate and crisps. Looking at 5,000 hospital patients, researchers found the most obese were more likely to be in high-pressure jobs. The report concluded that, to avoid panic induced food cravings, we need to control our blood sugar levels by snacking on high carbohydrate foods every two hours to keep levels steady.

Ulcers: The banana is used as the dietary food against intestinal disorders because of its soft texture and smoothness. It is the only raw fruit that can be eaten without distress in over chronicler cases. It also neutralizes over acidity and reduces irritation by coating the lining of the stomach.

Temperature control: Many other cultures see bananas as a 'cooling' fruit that can lower both the physical and emotional temperature of expectant mothers. In Thailand, for example, pregnant women eat bananas to ensure their baby is born with a cool temperature.

Seasonal Affective Disorder (SAD): Bananas can help SAD sufferers because they contain the natural mood enhancer, tryptophan.

Smoking: Bananas can also help people trying to give up smoking. The B6, B12 they contain, as well as the potassium and magnesium found in them, help the body recover from the effects of nicotine withdrawal.

Stress: Potassium is a vital mineral, which helps normalize the heartbeat, sends oxygen to the brain and regulates your body's water balance. When we are stressed, our metabolic rate rises, there by reducing our potassium levels. These can be re-balanced with the help of a high potassium banana snack.

Strokes: According to research in 'The New England Journal of Medicine' eating bananas as part of a regular diet can cut the risk of death by strokes by as much as 40%!

Warts: Those keen on natural alternatives swear that, if you want to kill off a wart, take a piece of banana skin and place it on the wart, with the yellow side out. Carefully hold the skin in place with a plaster or surgical tape! So you see a banana really is a natural remedy for many ills. When you compare it to an apple, it has four times the protein, twice the carbohydrate, three times the phosphorus, five times the vitamin A and iron, and twice
the other vitamins and minerals. It is also rich in potassium and is one of the best value foods around.

So maybe its time to change that well known phrase so that we say:

"A Banana a day keeps

the doctor away"

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Guess this one makes Beverly a Co-Editor for this issue of our newsletter ---

many thanks Bev…..

FECPPSG Editor’s Note:- As a woman who drives long distances by herself, found this particular “Important Warning” to be most interesting and will now know what to do if this situation arises while I’m driving.

IMPORTANT WARNING

#77

Apparently police in unmarked cars must wait until you feel you've reached a safe place to pull off of the road. Check this one out...it's short, but may save your life.

Lauren was 19 yrs old and in college. This story take place over the Christmas/New Year's holiday break. It was the Saturday before New Year's and it was about 1 PM in the afternoon and Lauren was driving to visit a friend. An UNMARKED police car pulled up behind her and put his lights on. Lauren's parents have 4 children (high school and college age) and have always told them never to pull over for an unmarked car on the side of the road, but rather wait until they get to a gas station, etc.

Lauren had actually listened to her parents advice, and promptly called #77 on her cell phone to tell the police dispatcher that she would not pull over right away. She proceeded to tell the dispatcher that there was an unmarked police car with a flashing red light on his rooftop behind her. The dispatcher checked to see if there was a police car where she was and there wasn't and he told her to keep driving, remain calm and that he had back-up already on the way. Ten minutes later 4 cop cars surrounded her and the unmarked car behind her. One policeman went to her side and the others surrounded the car behind. They pulled the guy from the car and tackled him to the ground.... the man was a convicted rapist and wanted for other crimes.

I never knew about the #77 Cell Phone Feature, but especially for a woman alone in a car, you should not pull over for an unmarked car. Apparently police have to respect your right to keep going to a "safe" place. You obviously need to make some signals that you acknowledge them (i.e. put on your hazard lights) or call #77 as Lauren did. Too bad the cell phone companies don't give you this little bit of wonderful information. So now it's your turn to let your friends know about #77.

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FECPPSG Editor’s Note:- Well, here’s another article sent by a friend. This is another driving tip I never knew, but thought most worthwhile to pass on.

Our thanks to Sherrill Bauer.

NEVER DRIVE IN THE

RAIN WITH YOUR

CRUISE CONTROL ON

Don't know if the incident is true but the warning certainly is. So, PLEASE read it as it COULD SAVE YOUR LIFE!!

A 36-year-old female had an accident several weeks ago and totaled her car.
It was raining, though not excessive, when her car suddenly began to hydroplane and literally flew through the air. She was not seriously injured but very stunned at the sudden occurrence! When she explained to the highway patrolman what had happened he told her something that every driver should know - NEVER DRIVE IN THE RAIN WITH YOUR CRUISE CONTROL ON.

She had thought she was being cautious by setting the cruise control and maintaining a safe, consistent speed in the rain. But the highway patrolman told her that if the cruise control is on and your car begins to hydroplane - when your tires loose contact with the pavement - your car will accelerate to a higher rate of speed and you take off like an airplane. She told the patrolman that was exactly what had occurred. We all know you have little or no control over a car when it begins to hydroplane. You are at the mercy of the Good Lord. The highway patrol estimated her car was actually traveling through the air at 10 to 15 miles per hour faster than the speed set on the cruise control.

The patrolman said this warning should be listed, on the driver’s seat sun visor –

NEVER USE THE CRUISE CONTROL WHEN THE PAVEMENT IS WET OR ICY - along with the airbag warning.

We tell our teenagers to set the cruise control and drive a safe speed but we don't tell them to use the cruise control only when the pavement is dry. The only person the accident victim found, who knew this (besides the patrolman), was a man who had had a similar accident, totaled his car and sustained severe injuries.

FECPPSG Editor’s Note:- I find that when I use the Cruise Control I start relaxing too much behind the wheel so am very, very cautious when I do use it.

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Funny but the better part of this newsletter seems to have come from e-mails that I’ve received the past few months. I thank my many friends for making this newsletter easier for me to do. Hope you all find the various articles informative. Here’s another one…..

Barbara

THAT GOLDEN AGE

I just heard on CNN that the average cost for a Nursing Home per day in the USA is $188!!

Now, I figure it this way, I can get a real nice room at the Holiday Inn for around $65... that leaves $123 for beer, food (room service), laundry, Elvis collectibles, gratuities and clothes.

They have a swimming pool, some even have a workout room (therapy), a lounge, cable (recreation), washer dryer (if I am too impaired, a child or grandchild can pick up my clothes once a week, or they could rotate, that way everyone would only have to do it twice a year).

Most have free toothpaste and razors, but all have free shampoo and soap.

There may be a bit of a wait to get that first floor room, but that's all right, it takes months to get into some Nursing Homes. There is the Senior bus, the Handicap bus, a Church bus or van, cabs, alert cabs, and in some cities The Duck!

You have security and if someone sees you drop over, I am sure they would call an ambulance (if you break your hip, hopefully the family would be smart enough to sue). What more could you ask for?!

With AARP and other Senior discounts, I could be livin pretty dern nicely.

So, when I reach “That Golden Age”, help me keep my grin, just check my fat ole rickety ass into the nearest Holiday Inn!

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DUES FOR 2003:- Please take a look at your mailing label - on it you’ll see the month and year we received your 2002dues, i.e., 01/2002 means it was received in January 2002, so your 2003 dues was due in January 2003. If your mailing label has the year first and then the month, i.e., 2002/01 it means that you indicated to us in January 2002 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 information packets to all inquiring about Post-Polio Syndrome, any other correspondence we do, and postage for publicity and for the out-of-country (25) newsletters that we send out. We’re fortunate in that the “Free Matter for the Blind and Physically Handicapped” status takes care of the postage for the over 500 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 reciprocate by sending 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 if your date is due. We really need your support now more than ever. Just to keep you advised, in addition to the previously mentioned countries, our newsletter goes to England, France, Germany, Israel, Panama, Portugal, Lebanon, South Africa, Sweden, Taiwan and Wales.

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WHEN YOU MOVE PLEASE be sure to send us your new address. Sometimes the post-office will return the newsletter to us with a “forwarding period expired” notice on the front with your new address but most of the time they are just returned to us with “address unknown” on it. SO, if you want to continue receiving the newsletter it is UP TO YOU to make sure we have your new address.

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Oops, forgot to mention that the first article in this newsletter – “Post-Polio Update, May 2003” is reprinted with the very kind permission and assistance of the Rancho Los Amigos PPSG (especially Mary Clarke Atwood – who e-mailed the article to me, thereby saving me from retyping the entire article – THANKS, Mary).

Barbara

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FLORIDA EAST COAST POST-POLIO SUPPORT GROUP - Vol. 11 #3

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

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

NOVEMBER / DECEMBER 2003

WISHING ALL OUR FRIENDS

A CORNOCOUPIA OF GOODIES ON THANKSGIVING

A LIGHT FILLED CHANUKAH

MEETING NOTICE

Fear Factor

Caution Signs

Noticeably Absent from Research

Practical Management Strategies for PPS

Two-Day Conference

http://www.nichd.nih.gov/about/ncmrr/disabilities/index.htm