Post Polio Resource List

Posted for 4/15/2014

 Welcome! This is a web version of a periodic post about how the Post-Polio Internet resources are organized, and about how to access the information that's available. For additions or corrections, drop me a note at ppsrl@i-sites.net

 A good way to get information is to join one of the mailing lists and simply ask for the information that you need. Don't be hesitant to post questions or comments. If you need information, would like to share an experience, or would just like to say Hi, that's what this  is all about. There are a lot of knowledgeable and friendly folks to help out.    Ernie

You can visit the Forums Page or Additional Resources Page by clicking here or above.


New/Added/Updated as of 4/15/2014

  There were no updates for this posting.

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Short Takes - Descriptions of PPS:

 Post-Polio Health International:
      http://www.post-polio.org/edu/pps.html

 NINDS Website:
      http://www.ninds.nih.gov/health_and_medical/disorders/post_polio_short.htm

 Patient.co.uk:
      http://www.patient.co.uk/doctor/Post-Polio-Syndrome.htm#

 Wikipedia:
      http://en.wikipedia.org/wiki/Post-polio_syndrome


Major Internet Resources

 Post-Polio Health International's mission is to enhance the lives and independence of polio survivors and home ventilator users through Education, Advocacy, Research and Networking.

      http://www.post-polio.org/  and  http://www.polioplace.org/


 Polio Survivors Network in the UK has put up an exceptional site with information about Post Polio Syndrome, assessment and testing procedures, treatment, therapies and research.

    http://www.poliosurvivorsnetwork.org.uk/index.php


 PolioToday.org is published by the Salk Institute for Biological Studies. This website is designed to raise awareness of post-polio syndrome and to be a resource for polio survivors.

    http://www.poliotoday.org


 Post-Polio Syndrome Central has a huge number of links to Post-Polio Syndrome related Internet information and support resources. Check out the articles and postings by Edward P. (Eddie) Bollenbach.

    http://skally.net/ppsc/


 The Post-Polio Institute and International Centre for Polio Education

    http://www.postpolioinfo.com/index.php


 Although The Polio Survivors' Page, created by Tom Dempsey, is no longer available, it deserves special recognition as being one of the first and best pages of PPS information on the Internet. Thanks Tom!


Health Group Professional Locators 

 Post-Polio Health International
    http://www.post-polio.org/net/poldir.pdf

 Physiatrists: American Academy of Physical Medicine and Rehabilitation
    http://www.aapmr.org/patients/findphysician/Pages/default.aspx

 Post Polio Syndrome Resources State & Country Help Locator
    http://ppsr.com/infolocator.html

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Subject     Physiatrists
From          Bonnie

I researched the Northwest and found a wonderful physiatrist who
specializes in PPS. He was the first doctor to take my hypothesis of
PPS seriously and is now the very center of my support team. I learned
about physiatrists in a section of the book Post-Polio Syndrome, A guide
for Polio Survivors and Their Families. I've included excerpts below.

Bonnie
Oregon


Post-Polio Syndrome, A guide for Polio Survivors and Their Families.
page 30

"Physiatrists are physicians who specialize in Physical Medicine and
Rehabilitation (PM&R). The specially was created in the 1930's and
expanded quickly in the 1940's owing in large part to (1) wounded
military personnel and (2) the polio epidemics. ....

The need for physicians who understood rehabilitation principles and
were able to manage both acute and chronic injuries and illnesses was
intensified by the polio epidemics. ..... Because physiatrists were
particularly knowledgeable about prescribing exercise therapy for
patients, they became know as 'the physical therapy doctors.'" ......
concerned, not exclusively to be sure but in large measure, with the
chronic management of physically disabled patients.

All Physiatrists are trained to treat polio related issues; in fact
demonstrating competence in treating PPS is integral to passing the
medical specialty board examinations in PM&R. However, not all
physiatrists are interested in pursuing PPS as a clinical and research
interest, so their expertise does not extend beyond the initial
training. Bottom line is that regardless of specialty training, it is
highly desirable to find a doctor who has taken a special interest in
treating polio survivors. Many physiatrists are excellent polio doctors
because of both their early training and their clinical and research
interest in all aspects of polio and PPS."


Support Groups and Organizations

Post-Polio Health International has a comprehensive and up to date list at:
 
    http://www.post-polio.org/net/poldir.pdf


Medical Articles:

 PubMed - Type    post polio syndrome    into the search bar
    http://www.ncbi.nlm.nih.gov/pubmed?db=pubmed

 Medical Article List
    http://i-sites.net/ppsma/medindx.html

 Post-Polio Syndrome Central
    http://skally.net/ppsc/ppsc-s.html


Books and Videos

Books

  Some lists of recommended books

  Post-Polio Health International's list:
    http://www.post-polio.org/edu/aboutpol/books.html


   Descriptions / Reviews
   
    Blue - and - Comfort
    Twin Voices
    Climbing Kilimanjaro also here.
    Changing Lanes
    Out Of The Darkness: Coping with Disability
    We are all Welcome Here
    In the Shadow of Polio: A Personal and Social History
    Healing the Blues: A Success Story of a Patient and Her Therapist
    A Summer Plague: Polio and it's Survivors
    A Paralyzing Fear: The Story of Polio in America
    Small Steps: The Year I Got Polio
    FDRs Splendid Deception
    Sunrise at Campobello
    Called To Rise: A Journey Through Disability
    Iron Cradles
    A Nearly Normal Life
    The Man in the Iron Lung
    A Polio Memoir
    The Polio Journals: Lessons from My Mother
    The Post-Polio Experience
    Polio: An American Story also this review.
    Managing Post Polio: A Guide to Living Well...  also here
    Post-Polio Syndrome: A Guide for Patients and Their Families
    Post-Polio Syndrome and here.
    The Polio Paradox
    Polio Voices: An Oral History   


Videos

    Symposium on Aging
    Breathing and Sleep 2011
    PBS - American Experience - The Polio Crusade
    8 videos from Ohio Polio Network
    25 videos from Polio Network Victoria, Australia
    Richard Daggett
    Polio: The Haunting Ghost
    A Paralyzing Fear: The Story Of Polio In America
    Dr. Sam Pfaff: "Tracking Post Polio Syndrome"   and
         Dr. Susan Perlman: "State-of-the-Art Approaches to PPS"
    A Fight to the Finish: Stories of Polio

    Type post polio into the search box on YouTube for many others.



Lists of Recommended Books

Subject     Novels about Polio
From         "Judith " 

Here is a more detailed list of our books....

  WALKING FINGERS: THE STORY OF POLIO AND THOSE WHO LIVED IT   A Canadian History, Edited by Helen D"Orazio, Sally Aitken and Stewart Valin -36 Stories of polio survivors & care givers

  TO CATCH THE SNOWFLAKES: Memoir of a Polio Survivor, and Adoptive Parent, A High School Principal, and a Father of an Addict by Lawrence J. Schulenberg

  COME SMILE WITH ME: From the Heart of a Polio Survivor by Peter Thwaites

  THREADS OF MEMORIES  My Tragic But Fascinating Life by Arlene Roanhaus

  FDR'S SPLENDID DECEPTION by Hugh Gregory Gallagher

  BREATH: LIFE IN THE RHYTHM OF AN IRON LUNG - A Memoir by Martha Mason

  IN THE SHADOW OF POLIO by Kathryn Black In l954,, Black's mother was stricken with Polio.

  A NEARLY NORMAL LIFE by Charles L. Mee  Memoir Life changed in July 1953 with polio - became playwright and author

  BEHIND ENEMY LINES, A Memoir by John Durand, A Wisconsin Author Stricken in 1942

  SURPRISED BY L0VE - 34 Short stories of love and support by polio survivors

  GERHARD F. MILLER, His Life, His Poetry, His Philosophy And His Paintings - by his wife Ruth Morton Miller

  THE LITTLE RED CHAIR - by Alan A. Malizia  Author stricken by polio in 1954.

  ROLLING ON - by Gerald W. Hankins  The story of Gary McPherson, a 55 year old post polio survivor.

  SMALL STEPS: THE YEAR I GOT POLIO  by Peg Kehert  In 1942, Peg was l2 yrs. old when she contracted respiratory polio.

  WOUNDED DOVE  by Virginia Heslinga  A true story of courage, hope, faith, and love.

  7 WHEELCHAIRS A LIFE BEYOND POLIO  by Cary Presley  Polio at age l7 in l959, now 67

  LUCKY ONE  MAKING IT PAST POLIO AND DESPAIR  by Richard Maus

  POLIO & US  PERSONAL STORIES OF POLIO SURVIVORS IN IRELAND  Compiled and Edited by Nuala Harnett.

  ROUND TRIP TICKET TO HELL by Jack Mason  He learns post polio syndrome will take him back to beginning.

  SUCKING AIR, DOING WHEELIES:Memoirs of a Fifties Polio Survivor

  BLUE  by Joyce Moyer Hostetter  A novel good for all ages l944-45. Little brother gets polio & dies then l3 yr. old Ann Fay gets polio. Very well written

  COMFORT by Joyce Moyer Hostetter Continuation of Ann Fay's story

  CLIMBING KILIMANJARO  AN AFRICAN ODYSSEY  by Helen Bergan

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Subject     More polio books
From         Brenda

Healing the Blues by Dorothea Nudelman and her therapist David Willingham

Another one is A Paralyzing Fear The Triumph Over Polio In America by Nina  Gilden Seavey,Jane S. Smith, Paul Wagner

 I have read these and they are very good to read about the history, treatment and how people deal with the disabilities from polio.

Brenda

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Subject     Polio in Texas
From         Heather

I have recently published a book on the polio years in Texas. It is entitled, The Polio Years in Texas: Battling a Terrifying Unknown (Texas A & M University Press, 2009). It is listed on both Amazon and the Barnes and Noble websites. Is there a way it can be added to the list of books on polio?

 Thank you very much,
  Heather Green Wooten, Ph.D.

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Subject:     Recommended Books
From:        Jann

These are short recommendations on several of my favorite books about Polio and PPS,  Jann


"In the Shadow of Polio: A Personal and Social History"
by Kathryn Black.

This is an intensely moving story about a little girl who lost her mother to Bulbar Polio, which is the one (of three) types of polio. These people are the ones in the Iron Lungs. Most of them died, as did Kathryn's mother when she was only 6 years old. But, as an adult, she tries to help the little girl within to deal with this awful loss and void in her life, and the heartbreak of others around her. Too often polio is something we tended not to talk about, and Kathryn accurately shows how that lack of communication keeps us from
healing. As I said, intense and moving...


"Healing the Blues: A Success Story of a Patient and Her Therapist"
by Dorothea Nudelman and David Willingham

This riveting book is written by Dorothea, a Polio survivor, and her therapist. Depression often accompanies PPS, as it did for Dorothea. The book helps you understand the role of psychotherapy in dealing successfully with depresssion. It is worth exploring this avenue before resorting to drug therapy. It is also a trip back into Polio History.


"A Summer Plague: Polio and it's Survivors" by Tony Gould.

Tony tells a history of Polio in the United States. He explains about the first polio epidemic in New York in 1916, on through to the 1950s when the Salk Polio Vaccine was first approved for distribution. He also tells about Sabin vaccine. The second half of the book is personal stories of polio survivors, like Dr. Lauro Halstead, polio specialist at the National Rehabilitation Hospital in Washington, D.C. It is history at its best from those who lived through it.


  Polio Book Review online

http://www.businessweek.com/chapter/gould.htm

This is a wonderful review of Tony's book for those who have not read it.  I think most libraries should have it.  Or, one of the old bookstores, if you want to buy a copy. Try, "addall.com" for any old books, they check the availability and prices in several online bookstores.  Jann


"A Paralyzing Fear: The Story of Polio in America" by Jane S. Smith.

Highly recommend book on the Polio Epidemics of the past. Nice pictures, and first person accounts of how Polio affected so many lives. It will make you cry, so be prepared. Too bad Smith's other book: "Patenting the Sun: Polio and the Salk Vaccine" is out of print, because it is a very good book about the development of the Salk vaccine and Jonas Salk, himself. If you are interested in it, you can try one of the old book stores, or online (addall.com).


"Post-Polio Syndrome" by Lauro S. Halstead, M.D.

This is a textbook, but has the best information on Post Polio Syndrome. Highly recommended for health professionals or if you want more medical details on PPS.


"Managing Post-Polio: A Guide to Living Well with Post Polio Syndrome" edited by Lauro S. Halstead, M.D.

There is a detailed review of this book on Amazon.com by Jack Trombadore, from the NJ Polio Network Newsletter, Fall, 1998.


"Post-Polio Syndrome: A Guide for Polio Survivors and Their Families"
by Julie K. Silver, MD


"The Polio Paradox" by Richard Bruno, PhD


Books by People who Had Polio:

"Small Steps: The Year I Got Polio"  by Peg Kehret "Peg has written more than 30 books for children, many of them award winners.  This would be a great book to read to your children or grandchildren!


"Climbing Kilimanjaro" by Helen Bergan

Read about Helen's African Odyssey. She has travelled to places I will never go, but reading her book makes me feel like I, too, have been there...even down to using the crutches! True to form, it a Polio survivor wants to travel, they will find a way.


"FDRs Splendid Deception"

The Moving Story of Roosevelt's Massive Disability-and the intense effort to conceal it from the Public by Hugh Gregory Gallagher.

Many people never knew the extent of FDRs disability from Polio since he became a master of hiding his disability from the public. Few pictures were taken of FDR in a wheelchair, but there are some wonderful pictures of this historic period of time in this book.


A video and a play:

"Sunrise at Campobello"

This is an excellent video suitable for the entire family. It covers 34 months in the life of Franklin Delano Roosevelt from the time he got polio in 1921 at his summer home in Canada until he appears at the 1924 Democratic National Convention in NYC. It is a unique look into the past of a man destined for greatness, and how he dealt with a disabling illness. You see the beginnings of a great "deception," described in more detail in Gallagher's book, FDRs Splendid Deception (above).

"Sunrise at Campobello: A Play in Three Acts"  by Dore Schary This is the wonderful play which was a great success on Broadway before it was made into the 1960 movie. The book also contains 8 pages of pictures from the movie.

Jann , 2005
 --

 From:    Judith 

Great list Jann. Could I add one more (although I don't have the author's name right here..)

"A Nearly Normal Life" is about a boy who contracted paralytic/spinal polio while he was in high school. The book deals with his emotional and physical adjustments while coming to grips with the results of the disease. Very insightful and thought-provoking.

 --
 From:    Jann

Oh yes!  Certainly, I've read that book by Charles Mee quite a while back.  I think maybe he's a playwrite(?) or something in the NYC vicinity.  Great addition.  Anyone have anymore?  Jann
 --

 From:    ribill1

It's an oldie but a great story...

The Man in the Iron Lung -- The Frederick B. Snite, Jr. Story
by Leonard C. Hawkins with Milton Lomask

Just started reading it, but it is the story of a colorful, young, Notre Dame student with polio who lived in an iron lung as told by the family chauffer / caretaker.  Published in 1958, and long out of print.  But you can find some info about him on the Internet.  Found this volume at a used book sale.

Bill
 --

  From:    Mary Ellen

I don't think you mentioned "A Polio Memoir" by Agnes V. Axtell. Her husband had polio and accomplished a lot.

and a great children's book "Nana Needs a Nap" by Beryl K Baker

Mary Ellen

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Subject     Now available Polio Voices: An Oral History...
From          Scout 

Julie Silver and Daniel Wilson, Polio Voices: An Oral History from
the American Polio Epidemics and Worldwide Eradication Efforts
(Westport,CT: Praeger, 2007). It is available at both Amazon and
B&N.

 --

Subject     FWD: BOOK: The Polio Journals: Lessons from My Mother
From         Scout

The Polio Journals: Lessons from My Mother by Anne K. Gross, PhD, is a recent contribution to the post-polio literature. Gross, a clinical psychologist, received her mother's journals after her death in 1985. Eighteen years later, after her father's death, she dug out the diaries her mother started when she was in her fifties. Gross states, "This book is my attempt to make sense of the legacy of my mother's illness and the price all of us paid for not speaking the truth." For more details, plus a discussion guide, check out

http://www.thepoliojournals.com

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Subject     polio story
From         Jean 

I just finished reading "We Are All Welcome Here" by Elizabeth Berg. This is a story about a a post polio lady who used breathing machines to stay alive while living in her home back when not many were allowed to do this.  A quick read, but very humbling.

Jean

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Subject     Novels about polio
From         Charles

Greetings fellow PPS friends,

I have been a member of this group for years, but have remained in the background for most of that time.? I am writing you today to tell you about two novels that deal with polio in the 1940s.? I had polio in 1936, at the age of 11 months.? I went to Warm Springs in 1937, and had 13 operations and a lot of PT for the next 12 or so years.

An author named Joyce Moyer Hostetter has written two novels about a young 14 year-old girl named Ann Faye Hunnicut, who lives just outside of Hickory North Carolina.? The first of these novels tells of her getting polio in 1945, and participating in the so-called "Miracle at Hickory," during which a hospital was constructed in tents, complete with doctors, nurses and equipment almost overnight.? Ms. Hostetter won several awards for this novel, which is titled Blue.

The second novel is a sequel to Blue, and is titled Comfort.? Comfort continues Ann Faye's story, much of which is set at Warm Springs in 1946.? I served as the Warm Springs technical advisor to Ms. Hostetter on Comfort, and she gave me the honor of including my mother, who worked at the Georgia Warm Springs Foundation while I was a polio there, as a character in the novel.? I also have a "walkon" part in the novel.

Both Blue and Comfort are suitable for teenage to adult readers.

The publisher is Calkins Creek, Honesdale PA.


Charles

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Subject     Twin Voices
From         Richard

I just finished reading Twin Voices. This is a book by Janice Flood Nichols, whose twin brother died of polio in 1953 at the age of six. The day he was buried Janice also contracted polio. I've read many polio related books, both first person accounts and medical/ academic/ historical. Janice weaves all of this into one book. I highly recommend it.

Richard

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Subject:     Book on Post-Polio Syndrome
   From:      "Timothy " <TJS@yalepress3.unipress.yale.edu>

Post-Polio Syndrome: A Guide for Patients and Their Families

Yale University Press is pleased to announce the publication of POST-POLIO SYNDROME: A Guide for Patients and Their Families, by Julie K. Silver, M.D., director of the Spaulding Polio Center in Framingham, Massachusetts, with a foreword by Lauro S. Halstead, M.D.  This book on the diagnosis and management of polio-related health problems is an essential resource for polio survivors and their families and health care providers.

The effects of polio that occur decades after the disease has run its course weakness, fatigue, pain, intolerance to cold, difficulty with breathing and swallowing are often more devastating than the original disease. In this book, Dr. Silver draws on her years of professional and familial experience with post-polio syndrome to provide a historical overview of its diagnosis and treatment and to answer many questions that a polio survivor or a family member may have regarding the ramifications of this syndrome.

Dr. Silver discusses:
-- finding good medical care
-- dealing with symptoms
-- maintaining proper nutrition and weight
-- preventing osteoporosis and falls
-- sustaining mobility
-- the latest in braces, shoes, assistive devices, and wheelchairs and scooters

In addition, Dr. Silver explores issues involving pain management, surgery, complementary and alternative medicine, safe and comfortable living environments, insurance and disability, and sex and intimacy.

In the book's foreword, Lauro S. Halstead, M.D. writes, "Individuals who have Dr. Silver as their physician are truly fortunate.  For those who cannot be treated by her personally, reading her book is the best alternative."  Informative and supportive, POST-POLIO SYNDROME is sure to be an invaluable resource for polio survivors and their families.
 

About the Authors: Julie K. Silver, M.D., is an assistant professor at Harvard Medical School, director of The International Rehabilitation Center for Polio in Framingham, Massachusetts (visit their website at http://www.polioclinic.com/) and a physiatrist with the Spaulding Rehabilitation Hospital.

Lauro Halstead, M.D., is director of the Post-Polio Syndrome Program, National Rehabilitation Hospital, Washington, D.C.
 

Tim Shea
Electronic Promotion Coordinator
Yale University Press
P.O. Box 209040
New Haven, CT 06520-9040

tim.shea@yale.edu
203/436-1321phone
203/432-5455 fax

Be sure to visit our Website: http://www.yale.edu/yup

New release email notification service:
http://www.yale.edu/yup/signupemail.html  

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 "Managing Post-Polio, A Guide to Living Well with Post-Polio Syndrome," is edited by Lauro S. Halstead, MD, internationally renowned post-polio expert and a physician with PPS. The book is an easy-to-read layman-oriented guide and provides polio survivors, family members, support group members, and health care professionals with another tool to assist individuals with post-polio syndrome to live healthier, fuller lives

See http://www.poliosurvivorsnetwork.org.uk/archive/lincolnshire/library/booklist/managing.html

from: tomincal

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Subject:     POLIO STORY - NEW POLIO BOOK
From:        "Phyllis " 

NEW POLIO BOOK AVAILABLE:

Called To Rise: A Journey Through Disability (2001)  (208 pgs) By Madeleine Crowley [ISBN:0-936029-56-0]

Order information:Western Book/Journal Press, 6560-A SW McCarran Blvd., Reno, Nevada 89509 Phone: 775-787-1110

Price:Cloth edition with color jacket - $24.95; Paperback edition - $14.95

Excerpts of three reviews:

1) The vivid imagery; the understated humor that runs like a bright thread through a somber tale; and, most of all, the unsentimental spirituality that pervades the memoir without intruding on the readers own sensibilities these are all components that, together, move the reader to admiration and (dare I say) delight. This memoir will be read with interest by the (able bodied person) whose eyes may be opened, and with empathy triggered by this voyage into the experience of illness.
[Helen Pelligrin, Ph.D.]

2) Madeleine Crowley's memoir is a testimony to the capacity  of the human spirit to rise to unimaginable heights after the body has been assailed by a devastating and crippling disease. It is a testimony to the healing that may be found in mind and spirit, if not completely at the physical level finding expression in courage, compassion, wisdom, empathy and understanding. And it is a testimony to the transforming power of a sound marriage, to the way both partners can complement one another while learning interdependence, and to love as steady commitment, each to the other 93 in sickness and in health, in good times and in bad.
[Ernle W.D. Young, Ph.D., Professor of Biomedical Ethics]

3) It poignantly reminds us that long term illnesses much more than something that happens just to a persons body. Far more important are its effects on the dense networks of interpersonal relationships in which all of us are embedded. For anyone wanting to understand the fuller story of physical impairment in all of its aspects, this is a must reading.
[Robert A. Scott, Professor of Sociology]


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Subject:     New novel about polio
     From:    Mary  

  A new novel about polio has just been published in Australia. It is titled "IRON CRADLES" and was written by Carol Mara. It is published by Allen and Unwin , 9 Atchinson St.,St Leonards, NSW,1590, Australia the e-mail address is  Frontdesk@allen-unwin.com.au. The ISBN number is 1 86508 020 9.  It sells here for $A19.95 (about 10.70 US) It's not listed on Amazon.com yet but another book by the author is listed. The blurb on the back of the book says "What happens when the bond  between mother and child is broken? When distance and circumstance make for an enforced separation? Iron Cradles tells the story of one country family whose baby daughter, diagnosed with polio, is banished to a Sydney hospital and into isolation. With a depth of characterisation and a wonderful talent for storytelling, Mara shows us a small town's attitude to the contagious disease and to the family who are now considered by many to be tainted. While the focus of the story is the experience of the mother, Nettie, the broader social picture of Australia in the 1950s is woven skillfully into the narrative. Iron Cradles is a thought provoking and very moving exploration of a family in crisis, of powerlessness in the face of authority and ignorance, and of finding resolution." It is a great read and very moving. The author tells me that the trigger for writing the book, which is fictional, was noticing the effects a friend's early polio had had on her and her relationship with her mother. American readers will find the antipathy expressed by health practitioners against Sister Kenny of interest...she received little acceptance in Australia.
 Mary


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Subject:     "Climbing Kilimanjaro"
   From:       Helen  

Hello Lili and others,

Thanks for mentioning my book, "Climbing Kilimanjaro: An African Odyssey." As you said, it was a dream trip, filled with "exaltation, peril and excitement."  Writing about it these many years later made me realize how fortunate I was to have had that big adventure and I'm gladI had the nerve (or, was it foolhardiness??) to do it.

The book has been very well reviewed in many PPS newsletters and some groups are buying the book at a discount and selling it to members either as a money-maker for the group, or just to make it easily available to them. Anyone wishing to do that, please contact me. Also, for info on the book and how to order it, take a look at
http://www.openisbn.com/isbn/9780961527747/

Most of us won't be taking off for a lengthy trip through Africa, but I hope many will enjoy reading of the adventures I had after-polio, but before PPS.

Cheers,
Helen

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From:          "Michael "   

 I have published a booklet titled Changing Lanes..a guide to help when aging, illness or disability forces us into the Slow Lane. I write from the perspective of a polio survivor experiencing post polio syndrome, a disabled person who has experienced many changes.

For information contact mpcreurer@pacificcoast.net

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 "OUT OF THE DARKNESS: Coping with Disability"

Written by Robert Lovering, a polio survivor in Phoenix who has spent his entire adult life in a wheelchair and has been a counsellor on disability issues for many years.  --Interesting viewpoints and perspectives here.  - tomincal


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Subject     Book: The Post-Polio Experience
From         Scout

The Post-Polio Experience: Psychological Insights and Coping Strategies for Polio Survivors and Their Families by Margaret E. Backman, Ph.D.

"Margaret Backman, Ph.D., a Clinical Psychologist in New York City, has written numerous articles and given presentations on the psychological aspects of post-polio. She has now published a book based on her more than 25 years of experience with those who had polio.

Today many polio survivors find themselves with new symptoms reminiscent of the earlier days when they first had polio-- these new symptoms trigger frightening memories that had long been repressed, along with anxieties about what the future holds.

In The Post-Polio Experience Dr. Backman, examines polio survivors' psychological reactions to their earlier experiences and to their current struggles with the late effects of polio. Topics include: Understanding the early years
Issues of abandonment and anxiety, loss and bereavement
Facing the future
The Polio Personality: Does it exist?
Role changes from the perspective of significant others

The book also includes practical guidelines for survivors on:
Coping with the emotional and interpersonal aspects of PPS
Giving and receiving help, gracefully
Managing stress and depression
Negotiating relationships with family and friends
Developing a positive self-concept
Improving doctor-patient communication

Family and friends will also find the The Post-Polio Experience of interest. In the book they learn how to deal with the changing roles that they and the survivor now face and gain insight into their own needs, which interact and sometimes conflict with the polio survivor's needs.

Mental health providers, physicians, and other health professionals gain a better understanding of their patients' psychological reactions to Post-Polio Syndrome--paving the way for more effective treatment. An entire chapter is specifically written for physicians to aid them in their interactions with polio survivors.

The Post-Polio Experience can be purchased through the publisher:
www.iuniverse.com , or 1-800-288-4677, Ext. 501. The book is also
available through Amazon.com, Barnesandnoble.com, and through special order at Barnes and Noble bookstores. The cost is $18.95, plus shipping and sales tax, where applicable.


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Subject     Book: Polio: An American Story by David M. Oshinky
From         Scout

Polio: An American Story by David M. Oshinky

http://www.bookslut.com/nonfiction/2005_04_005020.php

"The book is called Polio: An American Story, but it's the subtitle that's truly accurate. Wholesome and appropriately respectful ... "
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Videos/Multimedia


Subject     Symposium on Aging (PPS)
From         Susan 

Micki Minner, who is an outstanding advocate for us with pps, was invited to speak at the University of Arizona at their Advances in Aging symposium.  Her talk is available for viewing online and it is excellent!

I learned some things from her speech that I did not know before and I believe this video is something that would be very useful to those of us who have friends and relatives that do not understand quite what we are going through.  A video is much easier to watch and comprehend and more likely to keep their attention than a packet of reading material might be.

Here is the link to the video.  It might be useful to start the video and let it buffer while you go do something else and then come back and watch it when it has fully loaded.

For those of you using a PC, click on the Windows Media Player icon. Those with a Mac or PC who have iTunes on your computer can click on the iTunes icon.

I am really excited about this speech.  I wish it would go viral amongst us and our loved ones.  It is a great talk.

http://streaming.biocom.arizona.edu/event/?id=23678

Susan

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Subject     PPS breathing and sleep conference
From         Michael 

The Breathing and Sleep Symposium was held on Saturday, October 29, 2011 at the Salk Institute for Biological Studies in La Jolla, CA. Here is a link to videos of the talks:

http://poliotoday.org/?page_id=877

or on YouTube:
http://www.youtube.com/playlist?list=PL1545AE90BC0AA733&feature=viewall


Michael 

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Subject     PBS Special on Polio
From         Together@PPRG.org

 AMERICAN EXPERIENCE presents The Polio Crusade, a one-hour documentary from filmmaker Sarah Colt (Geronimo, RFK) that interweaves the personal accounts of polio survivors with the story of an ardent crusader who tirelessly fought on their behalf while scientists raced to eradicate this dreaded disease. Based in part on the Pulitzer Prize-winning book Polio: An American Story by David Oshinsky, The Polio Crusade features interviews with historians, scientists, polio survivors, and the only surviving scientist from the core research team that developed the Salk vaccine, Julius Youngner.

This PBS web site gives more information and allows you to watch the entire program on your computer:

http://www.pbs.org/wgbh/americanexperience/films/polio/ 

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Subject     International Post Polio Conference Wellness
From        "Patrick "

Recently 8 videos have been put on YouTube..... from the Warm Springs Post-Polio Conference in April 2009.

The Ohio Polio Network has put links to these videos on their links page.

http://www.ohiopolionetwork.org/id7.html

Pat Kelly

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Subject     Shades of Grey Post Polio Syndrome
From        "Marilyn"

The Polio Network Victoria, Australia is a free service that provides relevant and accessible information, referral and support services to people who have had Polio, their families, carers and advocates.

There are 25 videos to view be sure to start with number 1.

http://www.youtube.com/profile?user=PolioNetworkVictoria&view=videos

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Subject     YouTube
From         Richard

Hi -

I just posted two polio related videos on YouTube. Actually, only one is a compilation of videos. The other is a slide show that was made with Photoshop for a digital photography class I took last year. If you get on YouTube, type "polio pavane" in the search box for the video and "polio journey" for the slide show.

Let me know what you think.

Richard

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Subject:     Polio: The Haunting Ghost
From:         CKS

Hi! If you will remember, I described to you a week ago my experience in viewing the 1-hour documentary about PPS that a fellow-PPSer produced. It's called "Polio: The Haunting Ghost." Many of you wrote to me to ask for more info about how to acquire this video. I have responded to all of you who requested info, and I want to give the rest of you this info, too.

To purchase this video ($38, which includes shipping and handling), write to:
Thomas Kruc
c/o Springfield Cable Endowment
1 Monarch Place, Suite 1320
Springfield, MA 01144-1001 

Ask for "Polio: The Haunting Ghost," produced by Carroll Dwyer. Carroll received a large grant from the Springfield Cable Endowment, and all of the proceeds will go back into the endowment for other creative endeavors.

I'm going to buy my own copy, and I'm thinking about going to my HMO to inquire about their giving me time at one of their in-service meetings so that I can show the video and speak about PPS.

Carol in Massachusetts

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Subject:     PBS website: Story of Polio in America
From:         J Flenner

A PARALYZING FEAR: THE STORY OF POLIO IN AMERICA
Learn more about polio, its history, and its impact on American society with this site that features a historical timeline of the development of polio vaccines, a video clip from the PBS television program, and more.

http://www.pbs.org/storyofpolio/ 

now at: http://www.snagfilms.com/films/title/a_paralyzing_fear


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Subject:     PPS Video Available
From:         Steve

Dr. Sam Pfaff's talk "Tracking Post Polio Syndrome" and Dr. Susan Perlman's talk State-of-the-Art Approaches to PPS" are available on one video tape.

Dr. Pfaff is a neurobiologist at the Salk Institute and is doing research on the development of motor neurons and how genes trigger stem cells to develop into motor neurons. He spoke at The Salk Institute in La Jolla, CA on June 6, 2000. The talk is 50 minutes including questions and answers.

Dr. Perlman is director of the PPS clinic at University of California at Los Angeles (UCLA) Medical Center. She spoke in San Diego, CA on June 18, 2000. Her talk summarizes the March of Dimes Third International Conference on PPS: "Identifying Best Practices in Diagnosis and Care" at the Roosevelt Warm Springs Institute for Rehabilitation, Warm Springs, Georgia (May 19-20, 2000). The talk is 90 minutes without questions and answers.

The cost is $20.00 including first class postage in the US.

For information on how to order, additional postage outside the US or any other questions, please e-mail:

PPSVideos@mail.com

Please have the subject say "PPS Videos"

Steve
Post Polio Group of San Diego
sandiego_polio.tripod.com


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Subject:     A Fight to the Finish
From:         Richard

Several people have asked how they can obtain a copy of A Fight to the Finish: Stories of Polio. You might contact John A. Herring, MD, Chief of Staff at the Texas Scottish Rite Hospital for Children, 2222 Welborn Street, Dallas, TX 75219. The documentary was made possible by a team from the Texas Scottish Rite Hospital.

Richard


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Subject     Polio Pioneer Helps Survivors Hold On To Strength : NPR
From         "GG"

Here's an interesting article about Dr. Lauro Halstead and PPS.

I have had the privilege of serving on several panels at PHI (GINI) Conferences in St. Louis with Dr. Halstead over the past twenty-some years. He often uses himself as a "test subject". He discovered that as a polio survivor he needed much more protein in his diet. I remember sharing a Pepsi one morning with him at a conference. Just a few months later after discussing the empty calories of our morning beverage, he was working with a dietician on formulating a PPS diet. He presented his findings at the next PHI conference.

I remember him discussing his feelings of going to a scooter and then powerchair, and a ventilator. It's much easier to describe my own feelings to someone who truly understands what I might be experiencing.

He's truly a "pioneer" in many ways!
GG in WI

http://www.npr.org/templates/story/story.php?storyId=103892252&ft=1&f=1007