A Publication of the Boca Area Post Group December 2011 “Sharing and Caring Together” Volume 14 Issue 12 NOVEMBER `11 MINUTES

You’re Invited Twenty-two members came to hear our speaker. We welcomed newbies Arthur Spector, Boynton Beach and Melvyn Perry, Delray Christmas/Holiday Beach. Good seeing Barbara Chedekel; Edie Luncheon Defede & friend Anita; Geri Gerber & friend Elaine; and Richard & Marcia Globus. Member Updates: Our oldest member, Wednesday Ann Dodes passed at age 103½! Jack Lebowitz December 14 recovering nicely from surgery. Dining Around: 6 people raised hands. 11:45 – 3:00 PM January 2012 Meeting: Will be held on Thursday, January 12. See page 18. Embassy Suites Hotel Cruise 2012: 44 final count! Aruba Room Christmas/Holiday Luncheon: Twenty- six people have signed up – how about you? 661 NW 53 Street 10-Minute Person: Arthur Spector Boca Raton, FL volunteered for January. 561-994-8200 for directions Nancy Saylor, part 2 – Nancy was West side of I-95 & Yamato Rd. invited to spend 3 weeks in Russia as a houseguest. Part of her trip was spent investigating her genealogy in Romania. Nancy’s RSVP by December 9th! great-grandfather was born in Russia, brought to Jane – 561-391-6850 Braila, Romania, adopted at age eight, because his parents did not want him to join the Russian Army Maureen – 561-488-4473 at age 12 when gentile boys joined at age 16. Grandfather, Julius, was born and raised in Braila, $20 pp inclusive Romania. Holiday Attire Nancy enjoyed the extraordinary ballet performances in Moscow and St. Petersburg. She offered to show a DVD at a future meeting. The Bring a $7 country houses have dachas where they grow Secret Santa Gift fruits and veggies for their families which Nancy enjoyed. In Russia, they have an underground Mention BAPPG for $3 valet. metro train that runs every two minutes. Air conditioning is seldom used and the people just Begin the season with your survive the heat. Their alphabet consists of 32 BAPPG friends enjoying good food, letters and some are backward. Her friend fellowship and surprises!! looks forward to Nancy’s return visit.

Due to a surgical emergency, our speaker, Wayne Rosen, was unable to attend. BAPPG appreciates the generosity of the In his place Tom McClary, CPO, LPO, following people who enable the printing of graciously filled in at the last minute. He has this newsletter: been with the practice for the past 2 years in Daniel Matakas Gale Etra the capacity of Associate. Tom has practiced Joyce Sapp Al Diamond for over 22 years, with special interests in Jacqueline BeVier Murray Schiffman prosthetic advancements for the pediatric Joyce Mac Donald through geriatric population. Michael & Judy D‟Amato Tom began his presentation stressing In memory of Ann Dodes the importance of evaluating muscle strength. It is critical to have this information when fitting for braces. They believe less is more when bracing and work WITH MANY THANKS under a Rx of a doctor. There are many We wish to thank the many types of braces depending on your needs and benefactors* who have given so generously making sure you are safe. to the Boca Area Post Polio Group. Casting for a brace is now done using fiberglass instead of plaster. It sets up, dries Hansa May quicker, less messy & can be cut with a Jeanne Sussieck scissor. Coming from leather and steel Philomena C. Nardozzi braces to plastic, control is much better, In memory of “Aunt Frances” Lisella Thomas Cannon lighter and less bulky. Finding a leather Anonymous craftsman is difficult. Carbon fiber braces, Louis & Minnie Nefsky developed by NASA, have strength with William & Jane McMillen little weight. In memory of Elio & Julia Cori Their braces have a warranty of 120 David & Arlene Rubin days from delivery, and they use the Theresa Jarosz manufacturer warranty to keep the cost down Alexander Patterson Eddie & Harriet Rice as well. They understand the importance of a Elio Cori & Josephine Hayden proper fit and will stick with you until it fits In memory of Julia Cori right – the brace is of no use if it stays under Mr. & Mrs. Daniel Yates your bed! Dr. Leo & Maureen Quinn We so appreciated Tom answering Steve Cirker numerous questions, and everyone Bruce & Dianne Sachs thoroughly enjoyed the “yummy” pizza and David & Margaret Boland soft drinks! Allen & Leta Baumgarten Sarasota Post Polio Support Group For an appointment – 954-447-7779. Paul J. Ritter, Jr.

Aben & Joan Johnson Thanks Rhoda for volunteering to take the minutes. *Names remain for 1 year.

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CHRISTMAS – THE BIRTH OF to God in the highest, and on earth peace among THE SAVIOR those with whom he is pleased!"” This simple story, known the world over, God‟s people had been turning against is the story of how the savior of the world Him and to their own ways since they were in entered time and space so that He could live a the garden that God had created for them. In sinless life, be sacrificed for the sins of the that garden, God promised that He would send a world, and overcome these sins through His savior, a Messiah, to save the people from their death and resurrection. It is the story of how the sinful ways and bring them back into a right human race can, through a faith in this savior, relationship with Himself. have eternal life with God. Christmas is the During the time of the Roman occupation time when Christians the world over, celebrate of Palestine, in or about the year 3-6 AD, God the Messiah‟s birth. began the fulfillment of His promise. At this By Russell Silverglate, Pastor, Hammock Street Church, Boca Raton, time, the Roman emperor, Caesar Augustus, FL, November 2008. decreed that all of Rome‟s subjects must be registered. In order to be registered, each man HANUKKAH – A CELEBRATION and his family had to return to his home town. OF THE TRIUMPH OF GOD’S A carpenter named Joseph and his betrothed, Mary, who was with child, went up from PEOPLE Galilee, from the town of Nazareth, to Judea, to Hanukkah comes to us from the inter- the city of David, which is called Bethlehem testimental period – that period of time in (Joseph was of the house and lineage of David). between the writing of the Old and New Scripture tells us that “…while they were Testaments. Interestingly, Hanukkah is only there, the time came for Mary to give birth. referenced one time in the Bible, in the New And she gave birth to her firstborn Testament, in John 10:22. Hanukkah is the son and wrapped him in celebration of the victory of the Hebrews over swaddling cloths and laid their Greek occupiers. In 165 BCE, led by the him in a manger, Hasmonean family of Mattathias the High Priest because there was no and his youngest son, Judah (called Judah the place for them in the Hammer or Judah Maccabee), the Jews inn. succeeded in evicting the Greeks from Israel and And in the same region there were re-dedicating the Temple that shepherds out in the field, keeping watch over the Greeks, under Alexander their flock by night. And an angel of the Lord the Great, had desecrated. appeared to them, and the glory of the Lord Hanukkah is the Hebrew word for shone around them, and they were filled with dedication; hence Hanukkah is the fear. And the angel said to them, "Fear not, for Feast of Dedication. behold, I bring you good news of great joy that According to the Talmud, will be for all the people. For unto you is born after the Temple had been cleaned and the this day in the city of David a Savior, who is Priests were ready to re-light the Temple Christ the Lord. And this will be a sign for candelabra, known as the menorah, they could you: you will find a baby wrapped in swaddling find only one jug of oil that was fit to use. This cloths and lying in a manger." And suddenly was only enough for one day, but it lasted for there was with the angel a multitude of the eight. This is why the Feast of Dedication is heavenly host praising God and saying, "Glory celebrated for eight days. By Russell Silverglate, Pastor, Hammock Street Church, Boca Raton, FL, November 2008. SECOND TIME AROUND, DECEMBER 2011 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 3

FOODS THAT BOOST YOUR THE FIRST CHRISTMAS JOKE – IMMUNE SYSTEM AND IT’S SCOTTISH . . . By Christine J. Kim A man in Calgary calls his son in With Flu season in full swing and Regina the day before Christmas Eve and winter weather around the corner, those says, telltale cold symptoms can be tough to ward “I hate to ruin your day but I have to off. tell you that your mother and I are divorcing; But don't throw in the towel just yet, forty-five years of misery is enough”. says Kim Barnouin, co-author of Skinny “Dad, what are you talking about?” Bitch. Your diet is the main provider for the son screams. your body's “daily boost of antioxidants, “We can't stand the sight of each other vitamins, minerals, fiber and enzymes to any longer”, the father says. “We're sick of protect the immune system” - meaning a each other and I'm sick of talking about this, poor diet can be a huge factor. A weakened so you call your sister in Stoughton and tell immune system can result from a number of her”. factors, including stress and excessive Frantically, the son calls his sister, consumption of such substances as alcohol who explodes on the phone, “Like hell and sugar, Barnouin says. So give your they're getting divorced”, she shouts, “I'll immune system a fighting chance with these take care of this”. health-boosting foods: She calls Calgary immediately and Lemons restore the body's acid-alkali screams at her father, “You are NOT getting balance, maintaining natural pH divorced. Don't do a single thing until I get levels that support healthy there. I'm calling my brother back and we'll bacteria instead of the viruses that both be there tomorrow. Until then, don't do thrive in acidic conditions. a thing, DO YOU HEAR ME?” and hangs Green tea and white tea are a up. powerful duo, stimulating and aiding your The old man hangs up his phone and immune system in the disease-fighting turns to his wife. “Done! They're coming for process. Christmas – and they're paying their own Garlic is “an edible antibiotic” that way”. seems to cure everything, Barnouin says, particularly Reprinted from Polio News, AB, 1st Quarter 2011. when raw.

Kidney beans and chickpeas (garbanzo beans) contain the necessary daily protein required for a strong immune system. Brazil nuts are the No. 1 source for selenium, an antioxidant that helps rejuvenate our bodies and kill off germs.

Reprinted from USA Weekend, Nov 12-14 2010.

Contributed by Jane McMillen, member. SECOND TIME AROUND, DECEMBER 2011 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 4

WHY DOES RESTING HELP? drained their reserves. After you rest, the neurons' protein supply increases and you By Richard Bruno, PhD are able to use your muscles again. But every time you drain your motor neurons, we Q: If the accepted theory of post- think you are doing damage that eventually polio muscle weakness is that our motor causes permanent weakness as the drained neurons are dying, why do I neurons die. Think of what would happen to improve with your car battery if you left the head-lights on rest after having every night. You get up the first morning a period of severe and your battery is flat. You jump-start the weakness when I battery and drive off. The next night you overdo? Even though I can become leave the lights on, jump-start the battery completely lame, the loss is temporary if I again, and drive away. But after about a rest up for a day or a week. week the battery will no longer take a charge A: You're describing a symptom that and you won't be driving anywhere. PPS researchers have totally ignored: Canadian PPS researcher Alan “transient weakness.” We call it “New McComas found that polio survivors who Year's Syndrome.” Polio survivors complain are getting weaker over time lose 7 percent that their muscles become significantly of their motor neurons per year. That's 7 weaker in late December, more than likely percent on top of the 50 percent they have because of too much Christmas shopping, already lost! Prevent transient weakness – but strength returns in January after they and possibly permanent weakness – by rest. resting before your muscles become weak, But something dangerous is happening let alone completely lame. Remember: You to cause the transient weakness of “New can replace your car's battery, but you can't Year's Syndrome.” Remember that the replace your motor neurons. killed off at least 50 percent of Reprinted from The Seagull, NC, August 2010. your motor neurons. The neurons that weren't killed were damaged by the poliovirus but were able to sprout – send out extra “telephone lines” – to talk to the muscle fibers that were orphaned when their motor neurons died. After polio you were left with less than half of your motor neurons – neurons that not only are oversprouted, but also have cell bodies that are smaller than normal, have damaged protein-making “factories,” and have been severely over-worked for the past 50 years. When you experience transient weakness, we think you have overloaded your neurons' protein-making factories and SECOND TIME AROUND, DECEMBER 2011 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 5

CHRONIC PAIN: DOES After six months on an aggressive, VITAMIN D HELP? high-dose prescription vitamin D replacement, the woman could cross off By Gina Shaw, WebMD every symptom on her three-page list. “I

Not getting enough vitamin D in your knew I wasn't crazy!” Plotnikoff says she system may be linked to chronic pain. told him.

Over the past 10 years, several That's just one woman. Her case researchers have found an association doesn't mean vitamin D will erase pain for between extremely low vitamin D levels and everyone. chronic, general pain that doesn't respond to However, Plotnikoff published a study treatment. in 2003 on 150 people in Minneapolis who Many Americans are running low on came to a community health clinic vitamin D. A study published in the complaining of chronic pain. Virtually all of Archives of Internal Medicine in 2009 them – 93% - had extremely low vitamin D showed that vitamin D levels have levels. plummeted among all U.S. ages, races, and Vitamin D blood levels of 30-40 ethnic groups over the past two decades.

ng/mL are considered ideal. The average But does not having enough vitamin D level in Plotnikoff's study was about 12, and cause pain? That's not yet clear. But here's some people had vitamin D levels so low what you need to know about vitamin D and they were undetectable. chronic pain. “The group with the lowest levels of vitamin D were white women of Boosting Vitamin D, Easing Pain childbearing age,” Plotnikoff says. “Most of Greg Plotnikoff, MD, senior them were dismissed by their doctors as consultant with the Allina Center for Health depressed or whiners. They attributed their Care Innovations in Minnesota, still pain to an inability to manage stress. But remembers the woman in her 40s who told after we replenished their vitamin D, these him that he was the 30th doctor she'd seen. people said, “Woo hoo! I've got my life “Twelve of them had told her she was back!” crazy,” says Plotnikoff, formerly an Plotnikoff notes that vitamin D is a associate professor of internal medicine and hormone. “Every tissue in our bodies has pediatrics at the University of Minnesota [vitamin] D receptors, including all bones, Medical School. “She had weakness, muscles, immune cells, and brain cells,” he achiness, fatigue – three pages worth of says. symptoms. Doctors had offered her antidepressants and seizure medications and And in March 2009, researchers at the all kinds of things that didn't work. I Mayo Clinic published a study showing that checked her vitamin D levels – and they patients with inadequate vitamin D levels came back barely measurable.” who were taking narcotic pain drugs SECOND TIME AROUND, DECEMBER 2011 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 6 required nearly twice as much medication to So if you've got chronic pain, it can't control their pain as did patients with hurt to ask your doctor to check your vitamin adequate D levels. D levels. “I believe this is absolutely medically indicated, and it should be the Jury Still Out standard of care for everyone with chronic, But other studies have shown no nonspecific musculoskeletal pain,” connection between vitamin D and chronic Plotnikoff says. pain, and a research review published in January 2010 showed that the evidence on “Considering that establishing the the subject is inconclusive. effectiveness (or lack thereof) of vitamin D in chronic painful conditions is a clinically “It would be nice if vitamin D worked important question, there is rather little high- for chronic pain. It would offer an quality evidence on this topic,” Straube says. inexpensive and simple treatment with “At present, we do not think the evidence in known and probably limited adverse this area is of sufficient quality to guide effects,” Sebastian Straube, MD, PhD, tells clinical practice. There clearly is a need for WebMD in an email. Straube is a physician- more and better studies in the future.” scientist at Germany's University of Gottingen and led the research review, If you have severe vitamin D published in the Cochrane Library. deficiency, any efforts to boost your D levels should be done by consulting with your But it hasn't been proven that boosting doctor. Too much vitamin D can be your vitamin D level will erase your pain. dangerous and lead to an excess accumulation of calcium in your blood, “Looking at all the available evidence, which can lead to kidney stones. the link is not convincing,” Straube says. “As far as treatment studies are concerned, Reprinted from The Seagull, NC, August 2010. we found a striking contrast in study outcome between randomized double blind trials that by virtue of their study design minimize bias, and other (non-double blind) studies that are more prone to bias. The latter largely do suggest a beneficial effect of vitamin D treatment; the former largely don't.

Plotnikoff says that there is no evidence from randomized, controlled trials that replenishing vitamin D levels will cure chronic pain. “But it doesn't hurt to do it,” he notes. “Repeat after me: At least we don’t get hurricanes...at least we don’t get hurricanes...”

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FOOD POISONING urination, severe weakness, dizziness or lightheadedness Mayo Clinic If you suspect food poisoning, contact your local health department. Your report Symptoms can help the health department identify a Food poisoning symptoms vary with potential outbreak and may help prevent the source of contamination. Most types of other people from getting sick. Besides food poisoning cause one or more of the listing your symptoms, you may need to following signs and symptoms: recall what you ate, where you got the food and when you got sick. Nausea Vomiting Reprinted from The Seagull, NC, August 2010. Watery diarrhea

Abdominal pain Stomach cramps Loss of appetite

Fatigue Fever

Signs and symptoms may start within Christmas By The Cupful hours after eating the contaminated food, or they may begin days later. Sickness caused A heaping cup of happiness, by food poisoning generally lasts from one 2 of love and caring, to 10 days. 1 of understanding,

1 of joyful sharing. When to see a doctor If you experience any of the following signs or symptoms, seek medical attention. A level cup of wisdom, 1 of artful living,  Frequent episodes of vomiting for more 1 of thoughtful insight, than two days 1 of selfless giving.  Vomiting blood  Inability to keep liquids down for 24 hours Mix ingredients together,  Severe diarrhea for more than three days Toss in a little flair,  Blood in your bowel movements Serve to everyone you know  Extreme pain or severe abdominal Topped with a tiny prayer. cramping  An oral temperature higher than 101.5 F May every measure of happiness (38.6 C) Be yours this Christmastime!  Signs or symptoms of dehydration – excessive thirst, dry mouth, little or no Contributed by Jo Hayden, member.

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TRUE STORY OF RUDOLPH all their savings and now Bob and his Unknown Author daughter were forced to live in a two-room apartment in the Chicago slums. Evelyn A man named Robert L. May, died just days before Christmas in 1938. depressed and brokenhearted, stared out his Bob struggled to give hope to his drafty apartment window into the chilling child, for whom he couldn't even afford to December night. buy a Christmas gift. But if he couldn't buy His 4-year-old daughter Barbara sat a gift, he was determined to make one – a on his lap quietly sobbing. storybook!

Bob‟s wife, Evelyn, was dying of Bob had created an animal character cancer. in his own mind and told the animal's story to little Barbara to give her comfort Little Barbara and hope. couldn't understand why her mommy could never come Again and again, Bob told the story, home. Barbara looked up into embellishing it more with each telling. her dad's eyes and asked, “Why Who was the character? isn't Mommy just like everybody What was the story all about? else's Mommy?” The story Bob May Bob's jaw tightened and his eyes created was his own welled with tears. autobiography in fable form. Her question brought waves of grief, The character he created was but also of anger. It had been the story of a misfit outcast like he was.

Bob's life. Life always had to be different The name of the for Bob. character? A little reindeer named Small when he was a kid, Bob was Rudolph, with a big shiny nose. often bullied by other boys. Bob finished the book just in time to He was too little at the time to give it to his little girl on Christmas Day. compete in sports. He was often called But the story doesn't end there. names he'd rather not remember. From childhood, Bob was different and never The general manager of Montgomery seemed to fit in. Ward caught wind of the little storybook and offered Bob May a nominal fee to purchase Bob did complete college, married his the rights to print the book. Ward‟s went on loving wife and was grateful to get his job as to print, “Rudolph the Red-Nosed Reindeer” a copywriter at Montgomery Ward during and distribute it to children visiting Santa the Great Depression. Then he was blessed Claus in their stores. with his little girl. But it was all short-lived. Evelyn's bout with cancer stripped them of

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By 1946, Ward‟s had printed and 9 CRUCIAL QUESTIONS TO distributed more than six million copies of ASK YOUR DOCTOR OR Rudolph. PHARMACIST That same year, a major publisher wanted to purchase the rights from Ward‟s to  What is the name of the drug, and what is print an updated version of the book. it for?

In an unprecedented gesture of  Is a generic version available? kindness, the CEO of Ward‟s returned all  How and when do I take the drug . . . and rights back to Bob May. how long? The book became a best seller.  Will this medicine work safely with other Many toy and marketing deals drugs and supplements I take? followed and Bob May, now remarried with  What about alcohol? a growing family, became wealthy from the story he created to comfort his grieving  Are any tests required with this medicine daughter. – for example to check liver or kidney functions? But the story doesn't end there either.  What are potential side effects? Bob's brother-in-law, Johnny Marks, made a song adaptation to Rudolph.  Can I get a refill? When?

Though the song was turned down by  How do I store this medicine? such popular vocalists as Bing Crosby and  Dinah Shore, it was recorded by the singing Where can I find written information about this medicine? cowboy, Gene Autry. Source: AARP Bulletin “Rudolph the Red-Nosed Reindeer” Reprinted from Atlantic County Post-Polio Support Group, NJ, October was released in 1949 and became a 2010. phenomenal success, selling more records than any other Christmas song, with the exception of “White Christmas.”

The gift of love that Bob May created for his daughter so long ago kept on returning back to bless him again and again. And Bob May learned the lesson, just like his dear friend Rudolph, that being different isn't so bad. In fact, being different can be a blessing.

Reprinted from The Sunshine Special, FL, Nov/Dec 2010.

Contributed by Phyllis Varacalli, FL May 27, 2008. SECOND TIME AROUND, DECEMBER 2011 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 10

NEW ADA RULES hunters to be able to pursue their active GO INTO EFFECT leisure choices.

Did you know that as of March 15, David Jones, FDOA President, shares, 2011, new ADA rules became effective that “What this means in everyday language is required wheelchairs (and other devices that wherever a person can walk, a person designed for use by people with mobility who uses a wheelchair must be permitted to impairments) to be permitted in all areas go. This law has great impact for people open to pedestrian use in public and state with mobility impairments to enjoy the park areas? The new rules also state that outdoors by use of assistive technology other other power-driven mobility devices must be than wheelchairs in providing equal access. permitted to be used unless the public and It is so exciting to see these and other state parks areas can demonstrate that such changes occurring that break down the use would fundamentally alter its programs, barriers for people with disabilities. services, or activities, create a direct threat, or create a safety hazard. All Florida residents should be able to enjoy the beauty of the state parks and the The ADA was officially signed on AMP program helps to accomplish this July 26, 1990 and prohibits disability while providing protection to valuable discrimination. Over the past 20 years, new natural resources. In fact, the FWC works pieces of the ADA have gone into effect hard to meet the needs of people requesting which has allowed time for compliance and access while protecting Florida‟s natural planning. The new rules cover other items resources. The FDOA welcomes the new also and the entire fact sheet with all the rule standards that increase accessibility for changes can be found at: people with physical disabilities. http://www.ada.gov/reg2010/ADAregs2010. Reprinted from No Barriers, FL, Summer 2011. htm.

In Florida, the Fish and Wildlife Commission (FWC) in conjunction with the FDOA, have prepared for this moment by proactively creating and successfully testing a prototype permitting system that will allow controlled and limited use of vehicles in areas where previously prohibited by law. In Memory of . . . The FWC and FDOA have used an Mrs. Ann Dodes Alternative Mobility Permit (AMP) program November 9, 2011 to enable people with specific mobility type (BAPPG member since 2001) disabilities to use non-typical vehicles to assist in ambulation. The AMP program has been used primarily by physically disabled

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From Henry's Desk . . . lungs in the world. This iron lung weighed 1200 pounds. BROKEN SPIRIT After fourteen months in the iron lung, “The Church is curiously a mixed body Snite was successfully moved from China to consisting of those who have never been Chicago by ambulance, train and ocean vessel. shaken in their self-esteem or self- He never became independent of the iron lung righteousness and who use the forms of except for several hours a day by using a religion for purposes of self-aggrandizement; portable respirator that could be strapped to and of the true Christians who live by a his chest. In 1939 he was able to travel to “broken spirit and a contrite heart.” This Lourdes, France. The public remained citation is attributed to Reinhold Niebuhr: interested in his story and the press followed him to Lourdes. Snite was able to bathe in the Once again we are approaching the healing waters and he said, “If it's God's will holiday season. Those of the Christian Church that I be cured, I will be; if not, I won't. I will be celebrating the birth of Jesus of figure I have a right to ask only one thing; the Nazareth. Most of us who are survivors of strength to face up to it. poliomyelitis have probably experienced the feeling of a broken spirit and many of us have once again experienced a broken spirit with the onset of Post Polio Syndrome and its ongoing aftermath.

Recently I have read again a polio biography entitled The Man in the Iron Lung. This 1956 book is about the life of Frederick Bernard Snite, Jr. Snite grew up in a family of Encased in his iron lung, Fred Snite Jr. accompanied by wealth, graduated from Notre Dame (left to right): Fred Snite, Sr.; Snite's children Marie, University and was a committed Christian all Kitty and Pinky, and Mrs. Fred Snite Jr. (Bettmann/Corbis) of his life. In 1939 he married Teresa Larkin, a One of the first polio victims to receive woman he had known before polio. They had significant publicity regarding chronic three daughters. His medical problems took dependency on the iron lung was Fred Snite, their toll and at the age of forty-three, Snite Jr. After college at age twenty-five he joined died in the iron lung in 1954 from heart and his family on a dream trip around the world in lung failure. His long time nurse felt he died 1936. While in Peiping (now Beijing) he after “eighteen years in that hunk of steel.” came down with polio. He was admitted to the Rockefeller Memorial Hospital. This Snite's courageous story helped the hospital was known as the John Hopkins of fledgling National Foundation for Infantile the Orient. His physician was a graduate of Paralysis or March of Dimes get a jump start. the Harvard Medical School. This hospital Snite was fortunate to come from a wealthy owned the only iron lung in China. At the family, but most polio victims did not have the time there were just over two hundred iron SECOND TIME AROUND, DECEMBER 2011 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 12 advantage of wealth. Snite's life was a great this fellow who speaks blasphemy? Who can inspiration to many people, especially forgive sins but God alone?” Jesus knew what Catholic Christians. In 1958 Snite's story was they were thinking and asked, “Why are you included in an elementary reader used in thinking these things in your hearts? Which is Catholic schools. The story was titled “The easier; to say, 'Your sins are forgiven,' or to Man in the Iron Lung” and was written by say, 'Get up and walk'? But that you may Leonard C Hawkins and Milton Lomask. The know that the Son of Man has authority on story revealed Snite's life in the iron lung and earth to forgive sins ... ” He said to the his trip to Lourdes. The story carries a paralyzed man, “I tell you, get up, take your religious message and ended with these words; mat and go home,” Immediately he stood up in front of them, took what he had been lying “As the years went on, he was on and went home praising God. Everyone constantly asking himself what he could do to was amazed and gave praise to God. They help others and to get closer to God himself. were filled with awe and said, “We have seen He never questioned God's will where his remarkable things today.” illness was concerned, but he was often plagued with the feeling that his prayers were During this holiday season many of us not worthy in God's eyes. He had no intention have probably experienced a broken spirit at of coasting into Heaven in an iron lung. some point in our lives. Many know the Frederick was determined to earn his way, just emotional pain of a broken spirit. As as the rest of us must. 'This life is preparation Frederick Snite, so many of us have perhaps for the next,' he often said. 'I have a job to do repressed our memories of a broken spirit and like everybody else.'” pushed on. That broken spirit may have been a small or large part of your polio pilgrimage. Nineteen hundred years before Fredrick In some cases after overcoming so much and Snite, the physician Luke tells the following adjusting to the reality of our personal worlds story in the earthly life of Jesus of Nazareth: we have persevered and lived a nearly normal life. Now, late in life, we have once again One day as he was teaching, Pharisees faced a reality that could break the heartiest of and teachers of the law, who had come from spirits. Many of you in our group have and every village of Galilee and from Judea and are still overcoming a broken spirit and “we Jerusalem, were sitting there. And the power have seen remarkable things today.” of the Lord was present for him to heal the sick. Some men came carrying a paralytic on a mat and tried to take him into the house to References: lay him before Jesus. When they could not Hawkins, Leonard and Lomask, Milton: The Man in find a way to do this because of the crowd, the Iron Lung, Double Day and Company, Inc; they went up on the roof and lowered him on Garden City, New York, 1956 his mat through the tiles into the middle of the Good News Bible, Today's English Version, Gospel crowd, right in front of Jesus. When Jesus of Luke, Chapter 5, verses 17-26. saw their faith, he said, “Friend, your sins are Reprinted from Polio Deja View, VA, Dec 2010-Jan 2011. forgiven.” The Pharisees and the teachers of the law began thinking to themselves, “Who is Graphic: http://www.wired.com/thisdayintech/tag/fred-snite-jr/

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FRIENDS AND PARTNERS: raising in the United States has been nearly THE LEGACY OF lost to history. Basil O'Connor (1892-1972), FRANKLIN ROOSEVELT AND FDR's former law partner, who also played key roles in the Georgia Warm Springs BASIL O'CONNOR IN THE Foundation and the President's “Brains Trust” in the 1930s, led the NFIP as

By David W. Rose, March of Dimes Archivist president for over three decades, from 1938 to 1972. During that period he served, Among the multitude of Franklin simultaneously, as head of the American Delano Roosevelt's enduring National Red Cross (1944-1949) and was accomplishments is his creation of the instrumental in creating the Salk Institute for March of Dimes, founded as the National Biological Studies in 1960. Roosevelt and Foundation for Infantile Paralysis (NFIP) in O'Connor are the only two non-medical 1938, FDR created the NFIP by presidential honorees in the Polio Hall of Fame at Warm proclamation on September 23, 1937 to Springs, Georgia; and yet there is no “lead, direct and unify” the fight against complete biographical treatment of Mr. polio. The new foundation quickly became a O'Connor's life that can validate his beloved institution through its popular historical importance as “the architect in the March of Dimes fund-raising campaigns fight against polio.” through which it claimed the conquest of polio with the Salk vaccine licensed on the In actuality, Roosevelt and O'Connor tenth anniversary of FDR's death, April 12, together set the groundwork for the massive 1955. In 1958, with polio on the wane, the campaign to end the polio epidemics in the foundation re-invented itself by launching an United States through the Georgia Warm adventurous program directed at birth Springs Foundation and the NFIP. Well- defects. As the birth defects programs known is O'Connor's initial reluctance to developed through the 1960s, the spearhead the efforts to create the Georgia foundation's mission expanded through the Warm Springs Foundation, but his loyalty to burgeoning fields of genetics and FDR superseded any initial hesitation he perinatology, evolving into its present may have had. O'Connor eventually mission, strongly characterized by a supported FDR's interest in Warm Springs campaign against premature birth launched wholeheartedly, and he became a passionate in 2003. These later developments, which spokesman for the polio cause. Their FDR could not have foreseen, continue and relationship matured not only through their thrive as part of his permanent legacy. mutual interest in Warm Springs, but through myriad channels of advice that While the story of FDR's creation of O'Connor provided for FDR after he became the NFIP and the first March of Dimes radio President of the foundation until his death in campaign in 1938 that deluged the White 1945, often spending time at his home there, House in dime donations has often been told, the “Little White House,” it was O'Connor the person who orchestrated these campaigns who directed the foundation during the that revolutionized volunteerism and fund- Roosevelt years, serving as treasurer and SECOND TIME AROUND, DECEMBER 2011 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 14 chairman of its Executive Committee and in March of Dimes trailers and films. ultimately succeeding FDR as president. Patriotism, the global war, the fight against polio and the dominance of the film medium The NFIP was founded in 1938 in part at the time all converged to make the March to establish a non-partisan basis for polio of Dimes extremely popular and successful fund-raising and research beyond the despite the war. As an ending to the war confines of Warm Springs. Realizing that began to emerge as a real possibility, FDR the problem of polio could not be effectively appointed O'Connor as President of the addressed by a local institution like the American Red Cross in 1944. O'Connor's Georgia Warm Springs Foundation, FDR visits to the Pacific and European theatres of issued a proclamation on September 23, the war for the Red Cross provided critical 1937 to create the NFIP. In his experience to him for the logistical proclamation, FDR focused on the need to complexities of the Salk field create a national organization to approach trial to come. the problem of polio in a holistic fashion. He stated that the Georgia Warm Springs After President Roosevelt's death on Foundation had devoted its efforts “almost April 12, 1945, Basil O'Connor succeeded entirely to the study of improved treatment Roosevelt as president of the Georgia Warm of the after effects of the illness” whereas the Springs Foundation, headed the Roosevelt new foundation would attack “every phase Memorial Commission, and continued to of this sickness.” Of course, O'Connor lead both the NFIP and the American Red assumed responsibility for leading the NFIP Cross (until 1949). O'Connor led the even though he continued to manage the Roosevelt Memorial Postage Stamp program at Warm Springs. Ceremonies at Warm Springs in August 1945 with a speech, “Nothing Could The formative years of the NFIP Conquer Him,” a title which summarized coincided with a period of global war, and O'Connor's admiration of FDR as president, raising funds for polio in a wartime economy commander-in-chief and fighter against found stiff competition from war bond polio. O'Connor promoted FDR's legacy at drives. Yet, in the patriotic climate of every opportunity. FDR's influence on the support for the President and American history of disability, polio and the armed forces, Hollywood favored the March independent living movement has been of Dimes. MGM mogul Nicholas Schenk repeatedly demonstrated. chaired the Motion Pictures National Committee March of Dimes Drive, ensuring Through O'Connor, the March of industry support from the highest level. As a Dimes willingly accepted FDR's legacy and result, the March of Dimes had a monopoly actively promoted its mission in the aura of on movie theater fund-raising during the war FDR's colossal reputation as the first and as thousands of theaters were authorized to only disabled president. The foundation permit collections that preceded a film. steadfastly and symbolically honored the Popular movie stars like Judy Garland, memory of FDR in traditions such as the Mickey Rooney and Greer Garson appeared annual visit to FDR's gravesite in Hyde Park

SECOND TIME AROUND, DECEMBER 2011 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 15 by each new national March of Dimes poster OMG – BUT ISN'T IT child. This practice endured at least until THE TRUTH!!! 's death.

A group of seniors were sitting around Historian Saul Benison has talking about all their ailments. commented on the historical significance of "My arms have gotten so weak I can the NFIP which illustrates the role of hardly lift this cup of coffee," said one. ordinary Americans in the fight against "Yes, I know," said another. "My polio. Benison said: “in 1937 . . . President cataracts are so bad; I can't even see my Roosevelt became convinced that polio coffee." could only be conquered through a broad and "I couldn't even mark an „X‟ at election sustained program of scientific education time, my hands are so crippled," volunteered a and research. The organization of the NFIP third. was in essence the first step toward the "What? Speak up! What? I can't hear realization of that goal. It was also you!" something more. At a time when deadly "I can't turn my head because of the assaults had already been launched against arthritis in my neck," said a fourth, to which the human spirit and life itself in Europe, the several nodded weakly in agreement. new Foundation . . . stood as an affirmation "My blood pressure pills make me so of the value of conserving human life and dizzy!" exclaimed another. dignity. Ordinary people everywhere "I forget where I am, and where I'm recognized this quality and quietly and going," said another. emphatically made its cause their own.” "I guess that's the price we pay for However, behind this realization lay the getting old," winced an old man as he slowly spirit of Warm Springs and the March of shook his head. Dimes, and the two men – friends and The others nodded in agreement. partners – who were most responsible for "Well, count your Blessings," said a woman cheerfully - - "thank God we can all formulating their vision and realizing their still drive" success. Must be from Florida.

David Rose has been Archivist of the March Reprinted from FECPPSG, FL, Sept/Oct 2011. of Dimes since 2001. He is a Certified Archivist, and he oversees the preservation and organization of the documents, photographs and films of the March of Dimes Archives in its national office in White Plains, New York. He is author of the first photographic history of the March of Dimes in the Arcadia Images of America series published in 2003. He is also an advisor to the Legacy Foundation. David holds a Masters degree in Anthropology from the New School for Social Research (New York, NY) and a Bachelor's degree in Anthropology and Philosophy from Case Western Reserve University (Cleveland, Ohio). Reprinted from Triumph, MA, Spring, 2010. SECOND TIME AROUND, DECEMBER 2011 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 16

INSURANCE CHANGES HURT only bear weight to transfer from a bed to a POWER-CHAIR USERS chair or wheelchair.” The new clarification may impact semi-ambulatory MSers, post- Per: AAPD'S Justice for All Internet site polio survivors, and those with incomplete SCI and others who can stand and move A recent “clarification” issued by the more than one step. Centers for Medicare and Medicaid Services (CMS), originally intended to curb These changes in Medicare policy will fraudulent claims for power wheelchairs, is probably result in similar changes in instead devastating manufacturers, dealers Medicaid and private insurance. and consumers. “They've thrown the baby {PPASF Editor's Note: As the American out with the bath water,” says Invacare's health care system grapples with the ability or Malachi Mixon III, in a January 30 New willingness to provide appropriate services allowing York Times article. Andrew Imparato, freedom of movement, it is important Americans president of the American Association of remember our rights and values. We have the right People with Disabilities, is also quoted: “It's to movement and to participate in our communities all just starting to sink in with the disabled how we choose. There is nothing luxurious about a mobility limitation, or of the treatment or equipment community. They are going to force people necessary to provide independent movement. It is to impoverish themselves in institutional not a luxury to be able to move – it is a right. settings.” Please consider joining the Users First Alliance at: www.usersfirst.org. The UFA mission By issuing a “clarification,” CMS is to empower wheelchair users to navigate the bypassed the usual process used for service delivery process. They are currently working with a young man who was denied a evaluating Medicare changes in policy. standing power wheelchair by Tennessee Medicaid. Victoria Tarpey, owner of a small medical They will track the steps taken by the consumer, supply business in upstate New York, says family, clinician and supplier. The consumer is she has recently been denied claims for 20 challenging this decision. customers in need of power chairs. One of As a community of wheelchair users, we do the denied claims was for an elderly man not yet have the power we will. But, we CANNOT lose hope that we can unite and create positive whose existing power chair “could clearly change. Other populations have united and created not be repaired,” says Tarpey, “and the man change. UFA has over 2000 members today!!} lives in his chair.” Reprinted from Post Polio Alliance of South Florida, FL, Jan-Mar 2011.

A 2005 CMS clarification reads in part: “if the patient is able to walk either without any assistance or with the assistance of an ambulatory aid, such as a walker, the power wheelchair is denied as not medically necessary.” Only claims for persons who are non-ambulatory will be covered. Non- ambulatory is defined as someone who “can

SECOND TIME AROUND, DECEMBER 2011 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 17

Joyce Mac Donald, Highland, IN: Thank you for your very informative newsletter. Wish I could find a post polio group in Northwest IN.

Bob Dodes, Boca Raton, FL: I'm sorry to have COMMENTS to tell you that my mother, Ann Dodes, passed away, Wednesday, Nov. 9 at the age of 103½. We Stanley & Anita Wolfe, Elkins Park, PA & placed her in a nursing home this past May and Boca Raton, FL: . . . and all of you who sent me was doing fine until about 10 days ago when she the lovely card full of Get Well Wishes – “thank- developed a fever and became disoriented. She you, thank-you” so very much . . . it was was hospitalized and seemed to be recovering but heartwarming to hear from the Polio Group!!! It took a sudden turn on Wednesday and she passed was a long-tough summer for Stanley and I, but away that evening. As you know she attended with the love of family and friends, the support meetings of the [Boca Area] Post Polio Group and encouragement, we managed to get stronger whenever she could and enjoyed it very much. I and stronger!! So, here we are now, getting ready just wanted to let you know that she is gone and I to return to FL by the end of October & hopefully also wanted to thank you for making her feel I‟ll get to see you at the November meeting!! accepted in the group and especially the Again, thank you all – Much love. sponsoring birthday parties you celebrated with Joyce Sapp, Carlsbad, CA: I have been very her. You definitely made a difference in her life remiss in my donations however your newsletter and I know she loved attending the meetings. continues coming. Thank you so much for the Jeanne Sussieck, Boca Raton, FL: I still miss dedication that you show every month. I do enjoy the meetings – but I really get a lot out of the the newsletter online it is so informative and well- monthly newsletter. I really enjoy reading written. I also enjoy “Maxine”. Thank you again everything in it. Hope this check helps. Sincerely. for your dedication. Sincerely. Murray Schiffman, Monroe Township, NJ: I Al Diamond, Boynton Beach, FL: As usual a enjoy reading the wealth of information you great newsletter – enclosed is a donation. Keep provide in your newsletter each and every month. up the good work. Keep up the good work and enjoy your upcoming Hansa May, Boynton Beach, FL: I have cruise. pleasure making a donation for your group. In infinite gratitude for all the help we receive.

Jacqueline BeVier, The Villages, FL: Here is my contribution to BAPPG. I look forward to your newsletter every month. You are providing a wonderful service for all the Polio victims! Thank you so much. Sincerely.

Gale Etra, Fort Lee, NJ: I have found your MARK YOUR CALENDAR! newsletter very helpful in the past. For some BAPPG JANUARY MEETING - NOTE DATE reason I am no longer receiving it. I have CHANGE: Thursday, January 12, 2012 to enclosed a donation to cover the cost. Many accommodate Silvinia Levis, MD, Professor & thanks!! Director, Osteoporosis Center, Univ. of Miami, Daniel Matakas, Westland, MI: Here‟s some and will begin her presentation at 12 noon. [donation] more. Please arrive promptly at 11:30 AM!

SECOND TIME AROUND, DECEMBER 2011 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 18

MISSION STATEMENT

To help polio survivors become aware Boca Area Post Polio Group collects no that they are not alone and forgotten. dues and relies on your donations. If you would like to make a contribution please To share our thoughts and feelings with make your check payable to BAPPG. others like ourselves. Thank you for your support!

To network with other support groups. Maureen Sinkule Carolyn DeMasi 11660 Timbers Way 15720 SE 27 Avenue To share information and encourage each Boca Raton, FL 33428 Summerfield, FL 34491 other to carry on. 561-488-4473 352-245-8129

Jane McMillen, Sunshine Lady - 561-391-6850 To educate the medical profession in diagnosing and treating Post Polio Syndrome. Flattery will get you everywhere! Just give us credit: To always maintain a positive attitude. Second Time Around, Date Boca Area Post Polio Group, FL

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BOCA AREA POST POLIO GROUP MONTHLY MEETING A Ministry of Spanish River Church 11:30 – 1:30 PM Second Wednesday of each month FOUNDERS Spanish River Church Carolyn DeMasi Maureen Sinkule 2400 NW 51 Street, Boca Raton

(corner of Yamato Rd. & St. Andrews Blvd.) Sunset Room of Worship Center COMMITTEE MEMBERS Entrance and parking on west side Pat Armijo Jo Hayden Irv Glass Sylvia Ward Effie Daubenspeck Jane McMillen

George Matthews Rhoda Rabson Danny Kasper Nancy Saylor E-mail: [email protected]

Website: www.postpolio.wordpress.com Printed by: R & C Management, Inc.

Miami, FL Disclaimer: The thoughts, ideas, and suggestions presented in this publication are for your information only. Please consult your health care provider before beginning any new medications, nutritional plans, or any other health related programs. Boca Area Post Polio Group does not assume any responsibility for individual member’s actions.