The articles in this particular newsletter were all sent to us by our members. We hope this will encourage other members to send us articles to share with others. We will still go through other post-polio newsletters, magazines, newspapers, etc., to give you articles and information that we feel will be of interest to you.

Additionally, this is a smaller than usual newsletter as I have had a family emergency and left Florida on Dec 14th to go to Long Island to be with my son and his family. My son was in a dirt-bike race and collided with another racer – he landed on his right leg and broke his tibia and femur, both of which worked their way up into his knee. Thankfully, this is “all” that happened – it could have been much worse. Hopefully, this will put an end to any more dirt bike riding for him. (We can always hope!!)

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NEW YEAR’S LUNCHEON

JANUARY 20, 2002

If you were faced with a serious illness, does your family know what kind of care you want? If your elderly parents, or other members of your family, were to become seriously ill, do you know what they want?

According to a recent study by the National Hospice and Palliative Care Organization, a majority of Baby Boomers are more comfortable discussing sex and drugs with their teenage children than they are discussing end of life issues with their elderly parents, even if one of their parents had been diagnosed with a terminal illness.

This presentation is for adults of all ages. It will be an interactive discussion that will include:

· The need to have conversations about our end of life wishes;

· How to communicate with family and health care professionals about our wishes.

· Advances directives – what they are, how to complete them, what to do with them once you have them.

This subject is an important one for all of us. Many of us cannot bring ourselves to discuss with issue with our children this may show us how to ease into the issue.

Editor’s Note:- I’ve reprinted this from our November/December 2001 news-letter as I feel it is really an important issue. The Holiday Luncheon Reservation Sheet on the last page of this newsletter. Please be sure to return it no later than January 12th, along with your check ($10./person).

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The following article was e-mailed to me by one of our members, Dr. Gerald Jelly.

Subject: Lost Wallet

A corporate attorney sent this out to the employees in his company.

WHAT TO DO IF YOU LOSE YOUR PURSE OR WALLET

We've all heard horror stories about fraud that's committed us in your name, address, SS#, credit, etc. Unfortunately I (the author of this piece who happens to be an attorney) have firsthand knowledge, because my wallet was stolen last month and 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. As everyone always advises, cancel your 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 ever thought to do this) - Call the three national credit reporting organizations immediately to place a fraud alert on your name and SS#. I had never heard of doing that until advised by a bank that called to tell me and 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 2 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

Experience (formerly TRW): 1-888-397-3742

Trans Union: 1-800-680-7289

Social Security Administration (fraud line): 1-800-269-0271

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The following article was written especially for us by one of our own local members, Vincent Orlando in DeLand. Many thanks Vinny!!

NO QUESTION NECESSARY – EXERCISE!

I was born in June 1958 and was diagnosed with having polio in December 1959. Simple math shows that I am currently 43 years old and have lived with my different abilities for nearly 42 years. I must be honest, and make it clear that my doctor has not told me that I have (or suffer from) post polio syndrome. I started "working out" at the age of 13 after a doctor told me that I would never walk without braces and crutches. That is, without an operation to fuse my knees and hips. This operation would leave me in either a standing or lying position. Bending/ Motion was something I would not give up. I worked my upper body as anyone else and became quite strong, and well defined. My legs were another story. Multiple leg operations cut away muscles from bones to stop my muscles from disfiguring my legs (for example knock-knee). Although some muscles were still attached, they did not function "normally" (atrophied from polio) therefore, re-building muscles was very painful. However, I did not let the pain stop me. I tried to build the muscles in my legs by using a seated leg press. I would push my legs straight, placing my hands on my knees and pushing down until my legs were in an almost locked position. I would then, as slowly as possible, resist my legs from unbending until they crashed back to my chest. I would repeat this motion until my legs ached. After realizing that there was little to no strengthening of my leg muscles, I wanted to discuss my situation with another doctor. I discussed this with a doctor and he made me realize that the effort, pain versus results, and time spent would not significantly improve my ability to walk. I still continue to work out and have discovered some interesting developments.

First, I do not subscribe to the belief that “if your muscles hurt in a more sustained fashion after engaging in exercise, you should probably not be doing that exercise. If your muscles recover and the pain subsides in a twenty-four hour period, then the exercise is probably not harmful, but still might become harmful over time." My own experience shows that within the first 24 hours after a new exercise regiment, my muscles are fatigued but I do not experience an exorbitant amount of pain. The muscles do tighten causing pain in the subsequent two (2) days but the intensity can be reduced if I do the same workout with a lesser intensity within the next 24 hours. Stretching after a workout and during this recovery period also reduces/eliminates such pain.

No matter how many days a week you plan on working out, each day of the program should concentrate on a different muscle group. A typical session would be:

· Day 1: Back and Biceps

· Day 2: Chest and Triceps

· Day 3: Shoulders and Legs

· Day 4: Cardiovascular

Work both muscle groups alternating one heavy and one light each day. To illustrate, my program is as follows: (Note: weight examples are to illustrate a heavy versus light day.)

· Day 1: Heavy back, light biceps (example: 80-100 lbs, 30-35 lbs respectively)

· Day 2: Light chest, heavy triceps (example: 70 lbs, 50-70 lbs respectively)

· Day 3: Cardiovascular

· Day 4: Heavy shoulders (75-120 lbs)

· Day 5: Light back, heavy biceps (example: 70 lbs, 40-50 lbs respectively)

· Day 6: Cardiovascular

· Day 7: Heavy chest, light triceps (100 lbs, 40-50 lbs respectively)

· Day 8: Light shoulders (60-75 lbs)

· Note: You can work your abdominal muscles every day if desired.

Realize that this 8-day program can be accomplished over an 8, 12, or 16 day period depending on how fast your muscles recuperate. When starting such a program, your body will require additional rest. Listen to your body. You can lessen the fatigue factor by sleeping more and altering your eating habits. Both sleep and nutrition are essential components to getting in shape and/or increasing your strength. I added “PowerBars” to my diet as an evening snack, and an hour before a workout to increase my energy level. Additionally, I eat a ProteinPlus bars after each workout to help the muscle rebuild and strengthen itself. Listen to your body. You will need to determine the difference between pain and hurt. My definitions are as follows. Pain is something that you can work through. It decreases in a relatively short period of time. Hurt requires a longer period of time and may require some type of intervention. I strongly suggest consulting a doctor before starting any exercise program or if pain becomes persistent or too much to bear.

This year (2001), I started participating in wheelchair marathons. Because of this, I have reduced my weight-training program to just once or twice a week (cross training). I now concentrate my efforts on cardio-vascular training by doing roadwork 4 times a week. On weekdays I ride 4 – 8 miles a day, and on the weekend (usually Saturday) I ride anywhere from 13 – 22 miles. If anyone is interested in starting an exercise program and would like to discuss weight or cardiovascular training, feel free to contact me at marathonrider@yahoo.com.

I stated above, exercising muscles damaged by polio is probably a futile effort. Strengthening muscles unaffected by polio is beneficial. I have learned to cheat on exercises that involve polio-affected muscles (for instance, my lower back and abdominal). Concentrating on oblique and upper abdominal muscles have helped my flexibility and slowly allowed me to build lower back abdominal muscles that were impacted by polio.

Finally, I would like to share one opinion or perspective regarding my lifestyle. I have always been a fighter but now that I am in my 40's, I have learned to choose my battles more wisely. Even though I might have a body of a 50 or 60-year-old man, I still have the attitude of a 13-year-old boy who was forced to deal with reality (for the very first time) that I would never walk again. I hate terms like handicapped, disabled, or the dreaded crippled. Handicaps are points to help you compete with a better player (such as in golf or bowling), disabled is a car on the side of the road - unable to move (maybe just out of gas), and crippled is a creek. I view myself as "diff-abled" (or differently-abled). In other words - "Don't disrespect (dis) by abilities, by calling me disabled!" I believe that the mind and body are connected in ways that scientist may not quite understand. Besides working the muscles, any kind of physical activity is good for the mind. It decreases blood pressure, relieves stress, and promotes a positive attitude (a sense of accomplishment). We must be sensible in our workout regiment. "No Pain, No Gain," is a true statement - we just need to determine how much pain/gain is right for us.

Editor’s Note:- Remember, exercise is an individual project. Do what is right for your particular situation and ALWAYS check with your doctor to make sure you are not doing yourself more harm than good.

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The following article was written for us by Dr. Backman, who you may recall, was a speaker at our December 2000 Conference. Many thanks for the article Dr. Backman.

Surviving in Unsettling Times

By Margaret E. Backman, Ph.D.

With the country experiencing a sense of insecurity, many people for the first time are beginning to know what it means to feel vulnerable. But for those with disabilities, an underlying sense of vulnerability, of a potential lack of control, is not an uncommon exper-ience.

For those with PPS a sense of vulnerability may have its roots in the early experience with polio, when all of a sudden they could not walk or run or could not breath. Feeling they had been sent away by parents to the care of strangers, many children felt unprotected at an age when they were learning how to negotiate and trust in an uncertain world.

Gaining Control in Earlier Times

Yet, as we know, most of those who had polio came through these difficult times and grew up to be active participants in society, helping to shape the disability movement that has given support to their special needs. And by gaining recognition and having these needs met, such as accessibility and equal opportunity in the work place, those with disabilities gained more control over their lives and felt less vulnerable.

However, a sense of vulnerability began again, when PPS started to surface. But resilient people coming together through G.I.N.I and support groups found strength in numbers and in the sharing of information

Confronting New Threats

Then came September 11 leaving many wondering: “How safe am I now? How would I survive such a disaster?”

Remembering the stories of those in wheelchairs who were able to get out--Remembering the Seeing Eye dog that lead not only his blind owner, but also others through the smoke and ruin, reminds us that we have strengths and can survive. True, some disabled people did perish, but so did many able bodied people.

Coping with a Sense of Vulnerability

Those who are experiencing stress from the recent events—such as difficulty sleeping, irritability, anxiety, depression or anger--can use some cognitive techniques to help them cope with these uncertain times.

Talk to others. Remember you are not alone. Family and friends may be able to reassure you. Those in PPS support groups may share your anxieties and offer useful suggestions for coping.

Be as active as you can. Release physical tension by developing a routine of exercise; consult a physician or physical therapist knowledgeable about PPS to find out what exercises are good for you. For mental stress, relaxation exercises, such as those found on audio and video tapes, can be useful.

Reduce the amount of time you spend worrying about things you cannot control or change. Remember that disasters are beyond your control. Try to focus your attention on positive images, such as those who survived or those who helped others. Help others yourself, such as, friends and family or by volunteering.

Use drugs and alcohol in moderation, as they only remove stress temporarily. Limit your intake of caffeine and nicotine, which create stress-like reactions in your body making it harder for you to feel in control.

Have some modest plans. Although it is hard to predict the unknown, know whom you can call for help, keep phone numbers handy. Know who is around you and where exits are. Even a modest plan gives you some sense of control in your life.

If necessary, consult a professional. It is amazing how much stigma there still is in today’s world about seeking professional help for your mental health. But if you find that you are spending too much time worrying about life and feeling vulnerable, if you are experiencing thoughts of hopelessness or extreme anger, seek professional help from a certified counselor, social worker, psychologist, or a psychiatrist.

In Summary

We live our lives knowing that there are risks, but survival comes from trying to remain strong and vigilant and part of a larger concerned community. We are all learning to live in these unsettling times.

Margaret E. Backman, Ph.D. is a Clinical Psychologist in New York City, specializing in Health Psychology. She is the author of the book: The Psychology of the Physically Ill Patient, published by Plenum Press, 233 Spring Street. New York, NY 10013; e-mail: info@plenum.com.

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The following article was written especially for our newsletter by Dr. Mary Westbrook of Australia. Our thanks to you Dr. Westbrook!!

SISTER KENNY:-

A view from her homeland

By Dr. Mary Westbrook

When I meet American polio survivors I am often greeted warmly because I’m an Australian “like Sister Kenny”. “Without her, I’d never have walked again,” they say. Yet few Australian survivors express such indebtedness. Kenny developed her treatment for polio in Australia and established ten clinics during the 1930s. All closed during the Second World War when Kenny went to America. By then she had lost most of the considerable support she had once received from the Australian press and from some doctors. It is rare to find an Australian polio survivor who was treated by the Kenny method. Most recall that there was controversy about her treatment but are confused about how it differed from orthodox treatment. Kenny received numerous honours in America where the Kenny Institute is a memorial to her work, but today few Australians recall her name.

Kenny is most remembered in the northern state of Queensland where her family farmed on the Darling Downs. Here she sq her first case of polio as a bush nurse in 1911. When her father died the family moved to the township of Nobby, two hours drive southwest from Brisbane. In 1952 Kenny was buried in the old Nobby cemetery. A memorial website says, “The grave of Sister Kenny nestles against that of her mother. A gum tree casts shade in scattered patterns. Grass curls against the rusted cemetery gate. From here, the rich paddocks unfold as quilts as far as the eye can see. It is peaceful here. Nobby’s daughter has come home”¹. In 1999 her gravestone was modified to show her correct age as six years older than she had claimed. The Kenny museum and gravesite are advertised on Nobby travel brochures along with the Rala Ostrich farm and historic century-old Rudd’s Pub where tourists can enjoy a “monstrous roast lunch”. In 1998 the Queensland National Trust placed the Rockhampton building that housed a Kenny clinic on its “Endangered Places” list but despite this it was destroyed to make way for a car park. Kenny’s adopted daughter Mary McCracken recently established a Memorial Fund in conjunction with the Nursing Faculty at the University of Southern Queensland. The fund hopes to raise $A1.5 million to establish a Sister Elizabeth Kenny Professorship in Rural and Remote Nursing to commemorate her work as a pioneer bush nurse. The Fund website contains a loving daughter’s recollections of her mother many of them in hyperbole that is uncharacteristic of Australians’ somewhat laconic speech. Kenny is described as “Mother Theresa to the world’s sufferers of poliomyelitis, Sister Saint and Mother Mercy”¹.

Kenny’s departure from Australia is usually attributed solely to her conflict with doctors. However, Dr. Phillipa Martyr’s research² reveals that the role of the Australasian Massage Association’s (precursor of the Australian Physiotherapy Association) antagonism against Kenny has been overlooked. Kenny threatened therapists’ livelihood, particularly the growth in the number and status of their workforce provided by the polio epidemics. Martyr cites numerous examples of how the Massage Association went “out of its way to discredit Kenny and to align themselves securely with the orthodox medical profession, keeping up a steady pressure on their respective medical connections which contributed to the eventual rejection of Kenny and her methods in Australia”². In Queensland the Association attempted to prosecute Kenny because she practiced “what she calls re-education… As re-education is an essential part of physiotherapy and as Sister Kenny is untrained and unauthorized by the Board she should not be allowed to either practice or teach”. When therapists found that legally nothing could be done, they commenced investigation of Kenny’s nursing background and “a steady flow of communication with other branches warning them about Kenny’s activities”. One letter lamented, “It’s hard indeed when our medical men support such rubbish” as the Kenny method. Worried at their inability to compete with Kenny’s public profile the Association appointed two officers to publicize cases of recovery from polio after treatment by physiotherapists. Kenny visited England in 1937 and on her return said that many hospitals had offered her facilities. The Association had warned its British counterpart of Kenny’s lack of credentials and used this connection to expose Kenny’s claims of British support as false. Martyr argues that in its attack on Kenny the Association “gained state and public attention… and thanks to its policy of association and alliance with the medical profession it had gained the advantage”. Ironically much of Kenny’s method was integrated into physic-therapy. “Kenny herself had not been legitimized but her methods of treatment had”². Interestingly the website of the Kenny Memorial fund describes her method as “hydrotherapy in warm salt baths, extended manipulation of affected arms and legs, together with daily massages… much like contemporary physiotherapy”¹. Such a regimen was typical Australian physiotherapy for polio in 1949 when I contracted the disease. I possess mimeographed notes on treating polio that were issued to physiotherapy students at that time. They emphasise the new trend for “splinting selectively, rather than in an unnecessarily immobilizing form” and the need for regular liberty periods from splints. Starting ambulation earlier and using hydrotherapy to lessen stiffness and tenderness were now encouraged. However the hot packs that dominate American survivors’ stories were not adopted and splinting remained, though to a lesser extent than previously.

In retrospect, how wise were the exclusion of hot packs and the continuation of splinting in the treatment of polio in Australia? Canadian post-polio researcher Elizabeth Dean has reviewed the Kenny method and discusses which of its aspects are appropriate for treatment of polio contracted in developing countries today³. She argues that there is no scientific evidence for prolonged heat treatments, though heat may have a role in alleviating muscle pain and spasm in the acute stage of polio. Dean considers that in the recovery period the two important aspects of treatment are firstly, prevention of deformity (by good body positioning and orthotics support if necessary) and secondly, judicious active exercise to “stimulate muscle hypertrophy of both unaffected and recovered muscle fibres, maximize the potential for muscle re-innervation, and maintain strength and endurance in non-affected muscle groups”.

I suspect that Australian polio survivors’ unrecognized debt to Kenny is for igniting the optimism of the community, and indirectly of health professionals, regarding outcomes for people who contracted polio. Because of the hope engendered by publicity about the Kenny method a greater number of Australians with polio probably received rehabilitation and rehabilitation led to more successful outcomes due to the application of treatment that focused more on improvement of function than prevention of deformity.

1) Martyr, P. (1994) The Professional Development of Rehabilitation in Australia, 1870-1981. PhD thesis, Department of History, University of Western Australia --

www.healthsci.utas.edu.au/pmartyr/public_html/thesis/

2) Sister Kenny Memorial Fund website -- www. sisterkenny.org.au/

3) Dean, E, Agboatwalla, M., Dallimore, M., Habib, Z., Akram, D. (1995) Poliomyelitis: Revised principles of management. Physiotherapy, 81, 22-28.

Editor’s Note:- It should be note that many states in the United States allowed the Sister Kenny method of hot packs (as many survivors will tell you), however – New York State, in 1935, did not allow her method so I never had the hot pack treatment. I often wonder if it would have made a difference…….

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Our closing article in this issue is an autobiography of one of our own members – Byron H. Gibson. As you will see in his article, Mr. Gibson contracted polio in 1909 – we have attempted to locate polio survivors who were affected before 1909 but have not been successful. So, as far as we know, Byron is the oldest poliomyelitis survivor in the United States (possibly world-wide). Here goes….

MY STORY

I want to record my experience with polio and post-polio syndrome for family and also for experts in the field, who write that post-polio syndrome may occur 40 or 50 years after the original onset of polio.

In my case, I had polio in September 1909, when I was 1-1/2 years old. A neighbor told me that she saw me playing in my grandfather’s yard shortly after I learned to walk and that I collapsed in the yard while I was playing and that was the onset of polio, or what they called infantile paralysis at that time.

I apparently had a pretty good recovery, and I remember that when I would race with my friends I could run as fast as any of them. Edward Lassetter was the one that I raced with more than anybody else. This was true until I had an operation when I was 13 years old. They took me to Birmingham, where Dr. Lawrence E. Scott sliced the Achilles tendon at an angle and rejoined it so that the heel could drop down to the floor level pretty much like the other foot. I made a good recovery, but was never able to run as fast after that.

Even though I was a little slower, I managed to play intercollegiate tennis at Birmingham Southern College, and later at the University of Illinois. I played some really great players and almost held my own with them. I played tennis for 74 years, being doubles champion in DeLand, FL, and in Black Mountain and Montreat, North Carolina. I even won a silver medal in the 1986 Olympics, playing with Ray Hussey, my longtime partner – of course, that was the Senior Olympics!!

But when Post-Polio Syndrome hit, there was a recurring weakness in my right leg – the affected leg, which was smaller and weaker after the original polio attack back in 1909.

Two orthopedists thought that spinal stenosis caused my weakness. Two operations filed to help – then came the diagnosis of Post-Polio Syndrome, which they said they couldn’t help me with.

I take some medication and avoid exhaustion. I can walk some with a walker. At 93-1/2 I’m healthy and happy with my good wife of 67-1/2 years of marriage.

Byron H. Gibson

October 5, 2001

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DUES FOR 2001:- Please take a look at your mailing label - on it you’ll see the month and year we received your 2001 dues, i.e., 01/2001 means it was received in January 2001, so your 2002 dues was due in January 2002. If your mailing label has the year first and then the month, i.e., 2001/01 it means that you indicated to us in January 2001 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 (33) 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 450 newsletters sent out within the United States. We network with approximately 60 other support groups throughout the United States, Canada, Australia and New Zealand – some 40 of these 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 Brazil, England, France, Germany, Israel, Panama, Portugal, Lebanon, 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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EDITOR’S NOTE:- Since we started our support group and newsletter, we have always had a statement on the back page with respect to reprinting any of the articles in our newsletter. We have absolutely no objection to you doing so – the ONLY thing we ask is that you give us proper credit. We always give credit to those newsletters that we reprint their articles from. HOWEVER, we have noticed (in newsletters we receive from other support groups) that they do not give credit to the sources they reprint the articles from. This is not fair – a lot of hard work goes into doing a newsletter (especially one the size that we do), so – in the future we request that you please give proper credit – whether it’s to our newsletter of a different one. We want whatever information we put into our newsletter to be distributed to as many polio survivors as possible, so we have no problem with you reprinting them.

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Don’t forget our Holiday Luncheon on Sunday, January 20th at the RED LOBSTER RESTAURANT. Reservation form follows.

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FLORIDA EAST COAST POST-POLIO SUPPORT GROUP - Vol. 9 #3

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 2002

TO ALL OUR FRIENDS

WE WISH YOU A MOST

HAPPY AND HEALTHY NEW YEAR

MEETING NOTICE

NEW YEAR’S LUNCHEON

JANUARY 20, 2002

Editor’s Note:- I’ve reprinted this from our November/December 2001 news-letter as I feel it is really an important issue. The Holiday Luncheon Reservation Sheet on the last page of this newsletter. Please be sure to return it no later than January 12th, along with your check ($10./person).

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The following article was e-mailed to me by one of our members, Dr. Gerald Jelly.

Social Security Administration (fraud line): 1-800-269-0271

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The following article was written especially for us by one of our own local members, Vincent Orlando in DeLand. Many thanks Vinny!!

NO QUESTION NECESSARY – EXERCISE!

Gaining Control in Earlier Times

Confronting New Threats

Coping with a Sense of Vulnerability

SISTER KENNY:-

MY STORY

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 Eclipse Trail / Ormond Beach, FL 32174

2002 NEW YEAR’S LUNCHEON

R E S E R V A T I O N F O R M