FLORIDA  EAST  COAST  POST-POLIO  SUPPORT  GROUP   -   Vol. 13   #2

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

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

SEPTEMBER / OCTOBER   2005

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WISHING   EVERYONE

 

A   RESTFULL LABOR DAY

A SHANA TOVAH (HAPPY NEW YEAR)

TO ALL OUR JEWISH MEMBERS AND FRIENDS

-  and  -

A CANDY FILLED  HOLLOWEEN

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MEETING  NOTICE

 

September 18th, 2005  --   Dr. David Dysart (Ph.D), “The Polio Legacy: One

Mother and her Child’s Story.” David will answer the question of whether

Polio can be passed to the infant through the pregnancy of the mother.   

November 20th, 2005 --  Speaker from Hill & Ponton, law firm will discuss Social

          Security Disability

January 15th,  2006  --  NEW  YEAR’S  LUNCHEON

 

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CONTENTS

 

My Adventures                                         

Fight back against salt overload             

Emotional Eating                                      

Living with Post-Polio                              

Strategies for Living in Peace with Polio

Dues                                                         

Upcoming Conferences                          

Hotel Key Information                              

Credit Card Death…                                

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MY ADVENTURES

 

Well, my adventures this time start off with trips to various “parks” – My grandson, Joseph, came to spend some time with me and we decided to go to Daytona USA, right here in town, so that was an easy drive.  We took the tour, by shuttle, around the track – I was able to ride up their ramped shuttle with my scooter.  The simulated NASCAR rides that my grandson went on, were somewhat accessible – that is, if you could walk onto them.  As I am really not a thrill rider I opted not to go on any of them.  We did spend an enjoyable 3 hours at the attraction.

          The next day, the day before the actual shuttle launch, we took a drive to the Kennedy Space Center at Cape Canaveral.  There, again, we took a bus tour – this one having a ramp lift that I had to back up to get the scooter in – they then tied the scooter down after I moved to a regular bus seat.  The tour has two stops – you get off at each stop, explore the items there as long as you want, then get onto another bus. ALL the buses at the Space Center are kneeling buses and wheelchair/ scooter accessible.  We were treated as VIP’s at most of the show exhibits there – putting us in first (as soon as they spotted my scooter) and making sure we were comfortable.  We arrived at the Space Center at 11:00 am and didn’t leave until 5:30 pm – leaving at that time only because “grandma” was tired, Joseph could have continued for another hour or two.  Believe it or not, you could even get around their souvenir shops without too much trouble.

          Don’t know where I’ll take Joseph the next time he comes to visit, but, hopefully, we will enjoy it as much as we did Daytona USA and the Kennedy Space Center.

 

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Reprinted from Daytona Beach News-Journal, USA Weekend, June 24-26, 2005

 

EATSMART

By Jean Carper

Fight back against

salt overload

         

Sure, you can take the salt shaker off the table.  It’s tougher to get rid of salt overloads in the processed foods that account for as much as 80% of the sodium, we consume.

          Today, more companies offer low-salt and “no salt added” alternatives.  Choosing those, plus other low-sodium foods, can help lower blood pressure, as well as the risk of stroke, heart disease, kidney disease, diabetes, cataracts, brittle bones, stomach cancer and dementia.

          Too much salt now accounts for nearly 150,000 premature deaths a year, says the Center for Science in the Public Interest, a consumer advocacy group that has sued the FDA to make it crack down on sodium in foods.  Government guide-lines limit sodium to 2,300 milligrams a day (about 1 teaspoon) for adults under age 45, and 1,500mg daily for African Americans, older adults, and those with high blood pressure.  Most Americans eat 3,500mg to 4,500mg a day.

 

HOW TO SHAKE SODIUM

  Always check food labels for sodium content.  Compare brands.

  Buy no-salt-added foods.

  Rinse canned beans and tuna to remove some of the salt.

  Restrict bacon, ham, hot dogs, cold cuts, smoked salted fish, sauerkraut, pickles and processed cheese.

  Eat fresh vegetables.  They’re naturally low in sodium and high in potassium.  Bonus:  Potassium forces the kidneys to excrete more sodium.

 

~*~*~*~*~*~

 

SALT-BUSTING CHOICES

 

Tomato Sauce:  Cut 345mg per 1/4 cup

Use “no salt added” canned (15mg), not regular caned (360mg).

 

Corn kernels:  Cut 284mg per 1/2 cup

Use frozen, unsalted (2mg), not canned (286mg).

 

Cereal:  Cut 200mg per ounce

Use Oats (0mg), not corn flakes (200mg).

 

Peanuts:  Cut 228mg per ounce

Use unsalted dry-roasted (2mg), not salted dry-roasted (230mg).

 

Cheese:  Cut 245mg per ounce

Use cheddar (176mg), not processed American (421).

 

Popcorn:  Cut at least 50mg per cut

Use air-popped (0mg), not regular micro-wave (50mg or more).

 

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The following article was presented at the Post-Polio Health International’s Ninth International Conference on Post-Polio Health and Ventilator-Assisted Living, June 2-4, 2005.

 

EMOTIONAL EATING:

“What is Emotional Eating?”

“What Can We Do About It?”

Linda Bieniek, CEAP

La Grange, Illinois

 

“Emotional Eating” is the use of food to dull the

 pain underlying an important emotional need.

 

          Some people use alcohol, drugs, sex, money, gambling, work, and even TV, to avoid and numb their feelings.  Overeating, binging, and compulsive eating are ways of using food for similar pur-poses.  Regardless of which behavior we feel a compulsion to turn to, we need to explore these sensitive subjects with compassion and curiosity.  Criticism or shame will only contribute to a cycle that leads to emotional eating.  Instead, this paper offers several strategies and resources for beginning to explore the underlying needs of emotional eating in creative and fruitful ways.

 

Lightening Our Loads!

Most of us realize that emotional eating can add distress to any existing chronic health conditions.  However, sometimes we need evidence of how our bodies are affected before we reach out for the support we need to take action.  For example, gaining weight from emotional eating may…

·        Add pressure to our diaphragm, interfering with our breathing.

·        Limit our mobility and/or functioning.

·        Increase pressure to our joints, causing pain and wearing them out.

·        Place more stress on our heart, resulting in shortness of breath.

·        Create or exacerbate sleeping problems, such as sleep apnea.

·        Decrease our energy levels, possibly contributing to depression.

 

What Can We Do About It?

 

“The only way out of the feelings,

is through them.”

 

          Our bodies hold our physical, emotional, psychological, spiritual, and sexual wounds.  Emotional eating is one of the ways that our wounded parts express their need for our help.  We need open minds and kind hearts to support us in exploring our feelings.  Each step requires patience and a deep appreciation of our needs for safety, support, and hope.

 

Pay attention to our body’s sensations.  We can learn from our bodies.  Listening to our hungry feelings can lead us to insights.  The feeling of a compulsion to eat is one way that our bodies may gain our attention.  Expressing gratitude  for our body and its messages is important.  Appreciation encourages truthful revelations of our real needs.  For example, using a Gestalt approach, we could ask our “inner wisdom”:  “What is my body trying to tell me?”  Possible responses may include:  “Notice Me!” or “Don’t keep pushing me.”  We gain clarity by continuing to dialogue with our body.  For example, we could then ask:  “What do you want me to notice?”

 

          Author Geneen Roth has said:  You can take any avenue into your heart and soul.  Just start with the physical.  The physical is a reflection of the deepest part of yourself…”  In her book, Feeding the Hungry Heart she provides an example of dialoguing with our problems on pages 44-48.

 

Learn skills that create safety and support before searching for an understanding of emotional eating and solutions.  Internal and external safety, often described as a sense of security or trust, is of foremost importance before exploring our behaviors and feelings.  For this reason, we need to learn skills for “pacing” our explorations and for “staying grounded” in reality.  They will contribute to digesting new insights without “feeling overwhelmed” – a common trigger that can result in emotional eating.

 

          Being “grounded” means being focused in reality rather than distracted by thoughts, fears, or activities.  One way we can get grounded is to press our feet flat on the ground, if we are able.  Otherwise, we can visualize our bodies connected to the earth in an appealing way (e.g., by gardening, sitting under a tree).  Taking a few deep breaths will add to our ability to connect with our body’s sensations or to our intuition.  Imagining having a choir of supporters surround us – good, affirming, trustworthy people – will contribute to a sense of safety.  Deep breathing, stretching, visualizing, expressing positive intentions, and using forms of the Expressive Therapies and/or Energy Therapies are options for calming anxiety and connecting with our body.  A Treatment Approach Options chart is at www.post-polio.org/ipn/ppn18-4A.html.

 

Identify one external trigger at a time to gain insights.  Since emotional eating typically is an unconscious reaction rooted in good intentions (e.g., protection, com-fort, connection), we to apply our curiosity and play private detective to uncover what truly causes us to overeat, binge or eat compulsively.  In this context, a “trigger” is as an external event or sensory experience that produces a feeling, sensation, thought, behavior, or memory which can set off the cycle of compulsivity.  Typically, the trigger sequence outlined below can occur in split seconds:

  We see, hear, smell, taste, feel, think or experience something;

  We unconsciously or consciously are reminded of something – an experience, a feeling, trauma, loss, person, disappointment, etc.;

  We experience reactions:  a body sensation such as discomfort; a thought such as “Oh, not that!”; or a feeling such as fear.

  We turn to food to avoid or control our feelings.

 

          For example, upon hearing a certain song, “Jim” thought about a past relation-ship that left him heartbroken.  Instead of allowing his grief over his unresolved hurt to surface, he ate ice cream and cake and watched TV.  Eating comfort food and watching TV were his ways of dissociating from his feelings.

 

          We may identify our own “triggers” by noticing our eating patterns and then asking ourselves “What happened just before I overate?” and “What did I notice, hear, smell, think, taste, and/or feel in my body before I binged on cookies?”  If we continue backtracking with these questions, we may discover a series of triggers that contributed to a particular emotional eating pattern.

 

Most importantly, we need to remember that our responses to our emotional needs are rooted in “good intentions.” 

Before moving into the next section about the “Parts” approach, clarifying some distinctions may help.  “Triggers” are external – what happens outside of us – whereas “Parts” are internal characteristics of our Core Self.  We each have a variety of “Parts” of our personalities: a kind part, an angry part, a competent part, a communicative part, a quiet part, etc.  When a “trigger” stirs up an internal reaction – often unconsciously – that reaction may stem from an old unresolved feeling or experience that we can identify as a “Part” of us.  This simple description introduces us to a model that has proven very effective with individuals who have struggled to change their emotional eating patterns.

 

Consider the “Parts” approach to identify and respond to our emotional needs.  The “Parts” approach is one option for pursuing the next level of self-exploration and uncovering feelings that are closer to our hearts.  Several versions of this approach exist.  In the Internal Family Systems model, known as IFS, each aspect of our personalities and our behaviors may represent a “Part.”  Identifying the positive intentions and benefits of an “Emotional Eating Part” can provide us with valuable insights.  These clues, in turn, enable us to find an affirming response to our feelings or beliefs instead of choosing to pursue the feeling of a compulsion to eat.

 

          Our “emotional needs” are “Parts” of our Core Self.  “Protective Parts” may use food to suppress or to substitute for emotional needs such as security/safety, nourishment, or affection.  For example, the “lonely part” of us may turn to eating, but really needs human contact.  In another situation, a “Part” that hungers for more food, may actually long for a purpose in life – signs of spiritual undernourish-ment.  The following personality issues include examples of individuals’ “emotional needs” or “Parts.”

 

An individual who DESIRES intimacy and sexuality, and also FEARS these needs may eat when…

  craving support, connections with others, or a sense of belonging

  desiring a certain person’s love or attention yet reluctant to reach out

 

A person with unrealistic expectations may eat when…

  becoming disillusioned about the future

  lacking acceptance of his/her limitations

 

A person that seeks independence yet NEEDS and WANTS people to depend on may eat when…

            needing help, yet resenting when people don’t offer their assistance

            remembering being excluded from social activities as a child.

 

REFERENCES and RESOURCES

Schwartz RC (2001). Introduction to the Internal Family Systems Model,  Oak Park IL:  Trailheads Publications and (1995). INTERNAL Family Systems Therapy, New York:  Guilford Press.

 

Stone H and Stone S. (1989).  Embracing Our Selves:  The Voice Dialogue Manual.  Nataraj L., Elisabeth.  (1987).  Listen to the Hunger:  Why We Overeat.  New York, NY: Harper Row.

 

Sonder, B. (1993).  Eating Disorders:  When Food Turns Against You.  NY, NY:  Franklin Watts.

 

Explore resources and treatment approaches that teach us nourishing ways of responding to our bodies, beliefs, emotions, and experiences.  The good news is that therapeutic approaches and resources in the 21st century are far more effective than ever before.  Emotional eating is a complex, multi-dimensional subject.  Seeking assistance is a courageous step in breaking its cycle.  Most importantly, we need to work with a professional who has vast experience, an enormous range of skills, and deep sensitivity to how our past experiences may affect our responses in therapy.  When we develop a safe, trusting relationship with a competent professional we can make significant progress.

 

          The following lists identify books, treatment options, and professionals.  These can help us create shifts in our minds, bodies, emotions, and behaviors.  My hope is that each of us will learn what we truly hunger for and will find the inner strength and support to embrace our deepest emotional needs.

The Best of Health!

 

ADDITIONAL REFERENCES and RESOURCES

Geneen Roth’s workshops and books, especially:  Breaking Free from Compulsive Eating (p. 142-146); Feeding the Hungry Heart (p. 44-48); When Food is Love (p. 23-25; 200-201), and her Guide-lines.  www.geneenroth.com  408.685.8601.  (Not Therapy)

 

Dayton, T. (1997).  Heartwounds:  The Impact of Unresolved Trauma and Grief on Relationships.  Deerfield Beach, FL:  Health Communications, Inc.

 

Hollis, J. (1985).  FAT is a Family Affair.  Mpls, MN:  Hazeldon.

 

Finney, L.  (1995).  Reach for joy:  How to find the right therapist and therapy for you.  Freedom, California:  The Crossing Press.

 

Louden, J. (2000) The Comfort Queen’s Guide to Life.  Harmony Books.   (Delightful!)

 

Napier, N. (1993).  Getting through the day:  Strategies for adults hurt as children.  New York, NY:  W.W. Norton & Co.  (Describes grounding, pacing, containment skills.)

 

Olkin, R. (1999).  What psychotherapists should know about disability.  NY, NY:  Guilford Press.

 

Rutledge, T. (2002).  Embracing Fear.  New York, NY:  Harper Collins Publishers.

 

SARK. (2005).  Make Your Creative Dreams Real:  A Plan for Procrastinators, Perfectionists, Busy People, and People Who Would Rather Sleep All Day.  New York, NY:  Simon and Schuster.

 

Whitfield, C. (1993).  Boundaries and Relationships:  Knowing, Protecting and Enjoying the Self.  Deerfield Beach, FL:  Health Communications, Inc.

 

Zukav, G. (2001).  The Heart of the Soul:  Emotional Awareness.  NY, NY:  Simon and Schuster.

 

TREATMENT APPROACHES and PROFESSIONALS

Bieniek, L. (2003) Treatment Approach Options. Polio Network News, 19(1).9-11.

  www.post-polio.org/pn/ppn18-4A.html.

 

Internal Family Systems Mode:  Center for Self Leadership, P.C., P.O. Box 3969, Oak Park, IL 60303   (708) 383-2659. IFSCSL@aol.com, www.selfleadership.org:  workshops, training programs, conferences, books, tapes/CDs, practitioners.

www.schoolforliving.org  

 

Judy Steele, MTP, Dynamind Practitioner, Tapas Acupressure Tech-nique (TAT), NLP (Neuro-LinguisticProgram-ming).  Judy.steele@earthlink.net   612.590.3139.

 

Trauma Recovery and Eating Disorder Programs:  www.riveroakshospital.com/newsite/programs.htm  Dan Glaser, BCSW, Director.  800.366.1740.

www.castlewoodtc.com  Castlewood Treatment Center.  636.386.6611.  Mark Schwartz, Sc.D., Lori Galperin, LCSW, St. Louis, MO  1.888.822.8938

www.mccallumplace.com  McCallum on the Park.  1.800.828.8158.  Practitioner Referrals.

Linda Bieniek, CEAP

14 S. Ashland # 402

La Grange, Illinois  60525-2370

708-354-3640, LindaBieniek@msn.com

 

FECPPSG Editor’s Note:-  Linda says that if we have questions or concerns, we could send them to her at LindaBieniek@msn.com, or mail them to 14 S. Ashland Ave, #402, La Grange, IL 60525-2370 along with our contact information.  She asks for our patience in getting responses.   

 

Both Linda and I encourage you to join Post-Polio Health International (PHI).  While our organization is regional, PHI is international and offers extensive information, ideas, and contacts about physical, emotional, social, and spiritual health issues that complements our newsletter. If you are interested in obtaining program books and/or tapes of the 3-day international conference sessions  including the one on Emotional Eating or in becoming a member of PHI, log onto www.post-polio.org or call 314-534-0475.

 

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The following article was sent to me by an Indian post-polio survivor that I met at the 1999 St. Louis conference.  Neena and I have been keeping in touch ever since.  This is her story about …

 

LIVING WITH POST-POLIO

By Neena Bhandari

 

It was a meek October morning in 1967, only a month away from my third birthday, I had worn my frilled frock and white laced shoes to go and receive the triple polio vaccine. As I sang and danced along the way, making it difficult for my maternal grandfather to keep pace, little did I know that it was the last time I would be walking by myself.

 

Later that night, I remember my grandmother cuddling my tiny body burning with high fever as I complained of acute pain in my legs. She had carried me to the bathroom, where my legs collapsed.

 

In the days that followed, many more children like me began pouring into the Sawai Man Singh (SMS) hospital in Jaipur (Rajasthan).  It was two weeks before the outbreak was diagnosed as `Poliomyelitis’. The word didn’t mean much to me then and I certainly didn’t realise the implications it would have for a life just beginning.

 

The 1960s was a period when the mass epidemics of polio that had gripped mostly the industrialised countries for over 30 years were finally being brought under control with the introduction of effective vaccines. In India, Dr Albert Sabin’s Oral Polio Vaccine (OPV - a live attenuated polio virus) was imported from the erstwhile Soviet Union.

 

It seems there was a snag: the cold chain, critical for maintaining the potency of OPV in transport, was very poor. Some claimed the vaccine administered to us had already expired. Others said it had been left exposed to the sun at the airport; but this argument was dismissed on the grounds that the vaccine loses its potency when exposed to heat – neither harming nor doing any good.

 

In India, awareness about polio in the late 1960s was so low that no action was taken and this life-shattering illness was allowed to fade into oblivion. The Indian health authorities classified it as a polio epidemic, which had infected the children involved before the vaccine was administered.

 

While children of my age played, I spent my days at the hospital doing physiotherapy and hydrotherapy. My doctors became my playmates and the kittens born in the ward’s huge ventilators were a pleasant distraction from the painful exercises.

 

After a year of confinement, I started school and that’s when the harsh reality dawned:  I couldn’t run or go on the swing like other children, who constantly called me names and teased. Throughout my growing up years, wearing the long, rigid steel calipers and heavy boots - one bigger than the other to compensate the shortening in one leg - I was unable to use the Indian toilets. Western style toilets were few. I tried to control the bladder for hours at school, in trains and at public places.

 

The straight leg in the caliper made going to a film, sitting on a scooter, traveling on a bus, a nightmare. It made things really difficult for my family, especially my maternal grandmother with whom I spent most of my childhood. She tried every possible cure from daily physiotherapy to faith healers and rubbing the stinking fresh sheep’s milk.

 

As the 19th century British Prime Minister Benjamin Disraeli once said, “There is no education like adversity”, I adapted to the situation, learning to skip for long distances on the good leg, playing basketball, marching with the school band playing the flute and spent the time indoors reading, writing and learning the various arts and music.

 

Unlike the thousands of other polio-affected children in India, I was fortunate to have a family that supported my desire to be independent. I went to a boarding school and coped well with friends and nuns always ready to help with stairs and long queues for washing and bathing.

 

During college I realised, how important it was to be financially independent even for an able middle class girl to defer an arranged marriage. Straight after graduation, I joined The Times of India as a trainee journalist and soon discovered how physically demanding the profession was.

 

It was not until 1998 when we moved to the UK that I became aware of the many polio support groups like the British Polio Fellowship in London. It was a whole new world, which provided a platform to discuss the many anxieties and medical interventions that become necessary as one grows old with polio.

 

My greatest joy was to be able to walk and do what I wanted without stares and glares from the people around. It was a relief to find disabled-friendly buses and the Underground, which offered concession tickets. Even the famous black London cabs had special disabled fares. It made public places, libraries and superstores accessible.

 

On days when I would slip on the black ice, there was always help available. And I was no longer restricted to a bench in the park as there was an electrically-operated buggy to take the old and disabled around in Hyde Park.

 

Two years later, when I presented a paper at the Eighth International Post-Polio & Independent Living conference at St Louis, Missouri, I spoke on the role played by family and community in shaping the lives of polio patients to an audience that, in sharp contrast, had led a very individualistic and independent high-tech lifestyle.

 

Assessing my muscles and activity chart, Dr Jacquelin Perry, one of the first women orthopaedic surgeons in the US had said, “Slow down or you will be on a wheelchair in 10 years time”. I found her words rather harsh then, but four years later, I can see the truth in what she said as my muscles weaken and pain increases.

 

Chance brought us to Australia, a country where sport is a religion and it is not a place for the disabled. People’s reactions to my disability here have both shocked and surprised me. Questions like “If I could pass my infection to the others” have been frequently asked despite nearly 44,000 post polio survivors living in this country.

 

Societies in the west are grappling with ageing polio patients and young doctors who have not dealt with a single fresh polio case. Most doctors are not trained to recognise Post Polio Syndrome (PPS) or late effects of polio and are reluctant to treat it as a new condition. and Australia is no exception.

 

While polio survivors initially recovered and made the most of life with disability, today many of us are battling with profound fatigue, increasing muscle weakness, joint and muscle pain, increased sensitivity to cold temperatures and sleeping, breathing or swallowing difficulties linked to PPS.

 

The main advocates for increased medical and government attention to PPS have been the grassroots groups of polio survivors and we have a few in Australia too. However, it is very difficult to find a doctor, a physiotherapist and an orthotist at the same place who would understand your case and I have yet to find a comfortable caliper, which I wear for 12 to 14 hours daily.

 

As we advance into the 21st century, cure for polio is still a cherished dream. However, there is prevention, lighter and more effective calipers or braces, provision of electric scooters and power operated chairs, alternative medicine systems, legal benefits, new legislations, disabled friendly public places and a stronger than ever worldwide campaign to globally eradicate polio by 2005.

 

Governments across the world need to invest in medical and health care for ageing polio patients and to you my friend on the street -- a limp makes me no different.

The end.

 

FECPPSG EDITOR’S NOTE:-  I have not changed a word of this article.  Some of the spellings are as the English spell them – they are not typos.

 

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The following article was presented at the Post-Polio Health International’s Ninth International Conference on Post-Polio Health and Ventilator-Assisted Living, June 2-4, 2005.

 

SPIRITUAL HEALTH:

Strategies for Living in

Peace with Polio