Post-Polio Syndrome: A Guide for Patients and Their Families
A Summer Plague:  Polio and its survivors
Managing Post Polio: A Guide to Living Well with Post-Polio Syndrome
Called To Rise: A Journey Through Disability
Iron Cradles
Climbing Kilimanjaro
Changing Lanes
A Summer Plague: Polio and its survivors,  In The Shadow Of Polio: A Personal and Social History
Out Of The Darkness: Coping with Disability
 

Videotape: Polio: The Haunting Ghost
Videoclip:  A Paralyzing Fear: The Story Of Polio In America
Audio:      The Infinite Mind PPS Broadcast
Videotape: Dr. Sam Pfaff: "Tracking Post Polio Syndrome"   and
                 Dr. Susan Perlman: "State-of-the-Art Approaches to PPS"
Videotape: A Fight to the Finish: Stories of Polio
Videoclip:  The Curse of Polio Lingers
Videotape: Post Polio Syndrome
Videotape: Breathe Easy: A Respiratory Guide for People With Neuromuscular Diseases
 
 

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Subject: New Book on Post-Polio Syndrome
   From: "Timothy Shea" <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 ñ weakness, fatigue, pain, intolerance to cold, difficulty with breathing and swallowing ñ 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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Subject: Polio Book Review online
   From: JKH <jann@HOME.COM>

"A Summer Plague:  Polio and its survivors"   Tony Gould

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, back in MD somewhere...

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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.

For further detailed information about the chapter topics, authors, and ordering information see this Web site address --

http://www.zynet.co.uk/ott/polio/lincolnshire/library/booklist/managing.html

from: tomincal@aol.com

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Subject:  Re: [PPM] How Do I Know!
   From:  Bill Bernstein <syswsb@PPSWEB.NET>

Sorry, I was just informed they've changed the link for the book (Managing Post Polio in paperback).  Just go to http://www.nrhrehab.org/ and click on the link (currently on the left) for "publications"
 

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Subject: POLIO STORY - NEW POLIO BOOK
From: "Phyllis Hartke" <PHartke@AOL.COM>

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 Westbrook <MTWestbrook@BIGPOND.COM>

  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

Mary Westbrook
MTWestbrook@BigPond.com
 

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Subject: "Climbing Kilimanjaro"
   From:  Helen Bergan <HBergan@CS.COM>

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.bioguidepress.com/

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
hbergan@cs.com
 

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From:          "Michael Creurer" <mpcreurer@pacificcoast.net>
  Date:          Thu, 12 Mar 1998 16:48:23 -0800

 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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In her article titled "Forgotten But Not Gone" appearing in the October 6, 1997, edition of "The Nation" magazine, author BELL GALE CHEVIGNY reviews the books --

A SUMMER PLAGUE: Polio and Its Survivors  By Tony Gould Yale. 366 pp. Paper $18 -     - and -  -IN THE SHADOW OF POLIO: A Personal and Social History  By Kathryn Black  Addison-Wesley. 307 pp. Paper $12

The article can be read in "The Nation Digital Edition" on the World Wide Web at --   http://www.thenation.com/issue/971006/1006chev.htm
 

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 "OUT OF THE DARKNESS: Coping with Disability" is available for reading and/or downloading at --

http://www.primenet.com/~arcsphx/outline.htm

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@aol.com

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Subject: Polio: The Haunting Ghost
 From:    CKSwedberg <CKSwedberg@AOL.COM>

 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
      Date: Fri, 18 Sep 1998 12:49:12 -0400
      From:  J Flenner <varney@mindspring.com>

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/
 

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The Infinite Mind PPS Broadcast

 Lichtenstein Creative Media has put up a page on their Post-Polio Syndrome NPR spot.   http://www.lcmedia.com/mind998.htm
 

Subject:  [post-polio] The Infinite Mind PPS Broadcast.
     From:  "The SysOp" <mailto:mailtopostmaster@spacecon.net>

 By special arrangement with LCM, the GREAT, but no longer available on-line, Infinite Mind PPS broadcast is NOW available for you to listen to with RealPlayer on the  http://www.postpolio.org/  PPS page, or direct at: http://spacecon.net/pps/ra/tim998.ram or  http://spacecon.net/copyrighted.ramThis a 6 meg NON-downloadable RA file, and will take quite a while to play, but IS A GREAT PPS broadcast, with Dr's Bruno, Halstead, and Sparky Luan, plus phone-ins!

It is a good "intro" to the world of PPS and has a NUMBER of good survival points and practices for all of us with early OR  full-blown PPS.. I hope you find it worthy of the time and net-dropouts.. :-)

Tom McKeever

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Subject: PPS Video Available
  From:  Steve Schlesinger <steves@SPARC.SANDIEGOCA.NCR.COM>

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

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Subject: [PPM] A Fight to the Finish
   From: Richard Daggett <richarddaggett@MEDIAONE.NET>

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 Daggett
 

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Subject: [post-polio] The Video of the interview is online
   From: kellyk10@aol.com

Hi Guys,
     Thanks for all your emails. :))) I had trouble fitting my head on the pillow last night! ROFL If you copy and paste this address below you'll get  the interview. On the right side of the page you can click
on "VIDEO" and see  and hear it. You'll need "real player"??? to hear it. If you don't, you can  read the article. This was stressful but I'm glad I did it. We need to spread  the word anyway we can. Glad I could do my part. The new Quickie S626 came  today but that'll need it's own post! LOL  ZOOOOOOOOOOOOOOOOMMMMMMMMMMMMMMMMM!!!!!!!

  Jo (Joanne Kelly)

http://www.cbsnews.com/stories/2001/06/05/tech/main294984.shtml
 

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Subject: [post-polio] CN8 Show...
   From: "Tom McKeever" <pps2k@yahoo.com>

I have just talked to the Producer, Lisa, and here is how to get a copy of the Tape.

"To get a copy of the show on Post Polio Syndrome, call 732-602-7492 x2570. A recording will give you details.  Specify Real Life volume 1 show #45, topic:  Middle Age Aches, Pains and Fatigue.  Original air date was Wed., July 18, 2001.

Lisa Spagnuolo   Real Life Senior Producer"

NOTE: **Before** entering the extension, be sure to hit the "1" when requested.

For those who are unable to afford it, I have her permission to make a few copies of the one I am having sent to me. I have sent her a special tape to make me a sub-master for that purpose.   All I would need is a Mailer, T120 Tape and Postage, (and some time {G}) but mail me direct,
off-list if needed. :-)

Tom
pps2k@yahoo.com
 

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Subject: Re: From MDA website "Breathe Easy"
   From: lili g <sophia_7777@YAHOO.COM>

Dear friends,

After several weeks of waiting `on a wait list` the MD sent me this video from NC to view. I urge all of you who have breathing and respiratory problems now and initially with the polio virus to view this excellent video. Also a must see for PPS Support Group Meetings. It is very well done with excellent info.

See info to order below...
xxxooo,
lgg

 From the MDA website: http://www.mdausa.org/video/breatheeasy.html

 "Breathe Easy: A Respiratory Guide for People With Neuromuscular Diseases" is an authoritative yet easy-to-digest resource to help families understand the importance of monitoring and, when necessary, assisting the respiratory systems of loved ones affected by muscular dystrophy, amyotrophic lateral sclerosis or other neuromuscular diseases. These progressive disorders weaken the diaphragm and other muscles involved in breathing, leading to susceptibility to respiratory infections or acute respiratory failure.

 Geared to neuromuscular disease patients and their families, the 28-minute "Breathe Easy" video explains techniques for maintaining respiratory function and equipment options to assist with ventilation. Several physicians and a clinical nurse specialist present the information, which is accompanied by illustrations of each device or technique, and by comments from people with
neuromuscular diseases who use them.

 "Breathe Easy" is available on loan through any of MDA's 218 offices nationwide. A preview (1:12) of the educational video can be viewed by visiting MDA's Web site at www.mdausa.org. This site includes a zip code locator for local office information to order the full-length video. "Breathe Easy" can also be ordered through MDA\ National Headquarters at (1-800)572-1717.

 "Almost everyone affected by a neuromuscular disease will experience respiratory distress at some time, and many will ultimately succumb to respiratory failure," said Dr. Leon I. Charash, chairman of the MDA Medical Advisory Committee. Since patients have many questions and limited time with their medical care providers, Charash said, "'Breathe Easy' is a great primer for informed discussions about ventilation options when they become necessary."

 A second video, "Breath of Life," covers much of the same material but with more technical information for physicians, respiratory therapists and other medical professionals. "Skilled respiratory care can make a tremendous difference in the quality of life for adults and children with neuromuscular diseases," Charash underscored. "Ongoing medical education is vitally important, because of the variety of proven respiratory care options. That's why MDA produced a special 25-minute video specifically for the healthcare providers assisting people affected by muscle-wasting diseases."

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