30th September 1998
"A Paralyzing Fear: The Story of Polio in America"

Reminder
Watch for it on Public Broadcasting in the U.S. starting Monday, October 5, 1998.

"A Paralyzing Fear: The Story of Polio in America" is a 90-minute documentary film that will be released via satellite by PBS to its affiliate stations for broadcasting at 9:00 PM ET on Monday, October 5, or later. Each Public Broadcasting station has the option to buy the programs it wants and schedule them at their own discretion. So check your TV guides or go to this Web site to see if your local PBS station is one of the 159 that has it's own site, with a program schedule -- http://www.pbs.org/stations/bystate.html

This documentary tells the story of a crippling epidemic disease that, long after its annihilation, remains synonymous with terror in the national memory. It documents a U.S. polio outbreak in 1916, the terrifying epidemics of the 1940s and 1950s, and the relief that swept the country with the availability of the Salk vaccine in 1955 and Sabin oral vaccine in 1961.

The film features images from the March of Dimes archive that have been in storage for more than 35 years and is narrated by actress Olympia Dukakis.

An article about the film by Meredith Hindley which appeared in the September / October, 1997, issue of "Humanities" magazine from the National Endowment for the Humanities (which financed the film with a grant) is available for reading on the World Wide Web at the URL address -- http://www.neh.gov/publications/humanities/1997-09/polio.html

Scheduled afterward on some stations is a 30-minute follow-up companion program, "Conquering Fear: Epidemic Disease Today." This half-hour panel discussion features U.S. Surgeon General, Dr. David Satcher, and is hosted by National Public Radio correspondent Scott Simon.

The program looks at three contemporary epidemic disease issues: post-polio syndrome (a new phase of the disease that could affect as many as 600,000 American polio survivors); worldwide polio eradication efforts; and the future of vaccines, and childhood and adult immunization.

In addition to Dr. Satcher, the in-studio special features Dr. Lauro Halstead of the National Rehabilitation Hospital, Washington, DC; Hugh Gallagher, polio survivor and author; Dr. Harry Hull, senior medical officer of the World Health Organization's Polio Eradication Program; and William Sergeant, director of Rotary International's PolioPlus Program.

To learn more about polio, its history, and its impact on American society see this Public Broadcasting site (scheduled to be posted after the October 5 satellite broadcast) that will feature a historical timeline of the development of polio vaccines, a video clip from the PBS television program, and more at -- http://www.pbs.org/storyofpolio/

Tom Walter
tomincal@aol.com

13th September 1998
OMOD Members featured in Toronto Star

Jeannette Shannon and Barbara Dowds profiled in news story

In Epidemic echo Debra Black, Toronto Star Life Writer, talks to Jeanette Shannon, a previous president of the Ontario Canada March of Dimes, and Barbara Dowds about their experiences with Post-Polio Syndrome.

Debra Black begins by describing how Jeanette Shannon first began to experience the new symptoms of PPS.

Jeannette Shannon was in her 40s when she began to have difficulty walking.

"My foot started cramping," she explains. "And I had pain in my legs when I walked. I was diagnosed with arthritis, but the aches and pains continued and progressed. I had less energy."

Despite medication, the pain didn't get any better. In fact, she says, it got worse. So she started to exercise, hoping if she built up her muscles, the pain might go away.

That, too, failed and the pain got even more severe. She became progressively fatigued doing even the simplest of things.

No one seemed to know what was wrong.

Then, in the mid-1980s, Shannon's problem was finally diagnosed. She was suffering from post-polio syndrome - like hundreds of thousands of other survivors of the polio epidemics of the 1930s, '40s and '50s.

The article then retells the story of Jeanette's first encounter with Polio and brings us up to the present day.

To explain the medical background to PPS, Debra Black first calls on the University of Toronto's Neil Cashman, a scientist and clinician who is an internationally renowned expert in post-polio syndrome.

Post-polio syndrome is a health problem of epic proportions, says Cashman, who is also associated with Sunnybrook Health Sciences Centre.

Following a brief history of the Polio epidemics and the current Polio Eradication Campaign Neil Cashman continues:

As for post-polio syndrome, it is still not well understood by many. Even some in the medical community aren't sure how to treat it and some even go so far as to suggest it doesn't exist.

Not so, says Cashman. It is a very real medical disorder.

Dr. Cashman goes on to describe the neuron involvement in PPS.

Debra Black next returns to the second polio survivor to be featured in the article, Barbara Dowds. We first read of Barbara's encounter with Polio and how:

She never let it get to her and went on to build what she describes as a "normal life," marrying and having a family.

But by the mid-1970s she started to notice pain and weakness in her good leg if she was doing too much.

"Then those episodes got more frequent," she says. "I was trying to get medical help, but no one really knew anything."

Then, in 1983, Dowds read an article about an Ontario March of Dimes conference for polio survivors. She discovered she wasn't the only one suffering from fatigue and pain.

Since then, she has learned to manage her disorder. She rests, takes afternoons naps and tries not to tire herself.

She continues:

"You budget your energy," she explains. "I find now if I wash the dishes, they can sit and dry themselves and then I put them away. If I'm vacuuming, I'll do the living room and then rest. I don't try to do everything at once any more.

It's a matter of listening to your body, figuring out what I can take and back off a little. You can't sit around and veg. You have to do enough to keep your muscles in good shape, but without overusing them."

Debra Black next calls for comment from her second expert.

That's good advice, says Dr. Richard Bruno, chairperson of the International Post-Polio Task Force and director of the Post-Polio Institute at Englewood Hospital and Medical Centre in New Jersey.

But many polio survivors don't follow it. Bruno and his task force run a North American survey of polio survivors every five years.

He has found that most polio survivors have Type A personalities and are over-achievers. As children and young adults, they worked often eight to 10 hours a day in physiotherapy, exercising their muscles so they could walk again.

As adults, they still perform in exactly the same way, working and exercising, always pushing beyond the limits.

Dr. Bruno goes on to expand on the above and concludes:

Still, there is only one way to stop the fatigue and pain polio survivors experience, Bruno says.

"We have the golden rule for polio survivors: If anything you do causes fatigue, weakness or pain, don't do it or do a lot less of it. It works. The trick is to get people to follow it."

Debra Black ends her article with the following observation:

Meanwhile, Cashman and other researchers around the world are looking at some forms of medication that might ease the burnout and fatigue and ease symptoms and deterioration.

But it is too early to tell how successful these treatments will be.

The complete article (Copyright © 1996-1998 The Toronto Star) can be found at http://ww2.thestar.com:80/thestar/back_issues/ED19980911/entertainment/
980911LFE01_LI-POLIO11.html
The above document is no longer available.

10th September 1998
A PARALYZING FEAR: THE STORY OF POLIO IN AMERICA
AND
CONQUERING FEAR: EPIDEMIC DISEASE TODAY

KSPS Public Television in Spokane, WA Press Release

A Paralyzing Fear: The Story of Polio in America tells the story of a crippling epidemic disease that long after its annihilation, remains synonymous with terror in the national memory. The film documents the first polio outbreak in 1916, the terrifying epidemics of the 1940's and 1950's, and the relief that swept the country with the development of the Salk vaccine in 1955 and Sabin oral vaccine in 1961. The documentary airs on PBS Monday, October 5, 1998 9:00 p.m. ET (10:00 pm Calgary time) [see below].

Narrated by Olympia Dukakis, A PARALYZING FEAR examines America's reactions to the haunting disease it could not contain. Emotionally rich, personal accounts from polio survivors reveal the fear that epidemic disease engenders among people, including the pain and loneliness of the victims' isolation and the shunning of their families. The film features thousands of images from the March of Dimes archive that have been in storage for more than 35 years. Even now, vaccination rates in many parts of the country remain dangerously low, leading the Centers for Disease Control and Prevention (CDC) to mount a massive educational campaign targeting parents about the critical importance of immunizing their children on schedule against the diseases for which vaccines exist.

The 90-minute film will be followed by CONQUERING FEAR: EPIDEMIC DISEASE TODAY, a half-hour panel discussion featuring U.S. Surgeon General, Dr. David Satcher, and hosted by National Public Radio correspondent Scott Simon (check local listings). The program looks at three contemporary epidemic disease issues: post-polio syndrome (a new phase of the disease that could affect as many as 600,000 American polio survivors); worldwide polio eradication efforts; and the future of vaccines, and childhood and adult immunization. Dr. Satcher reports that the rate of childhood immunization in the United States for many disease, such as chicken pox, is alarminly low. Polio itself still exists in many developing countries, including Ghana, Somalia and India, and the World Health Organization has mounted a campaign to eradicate the disease worldwide by the year 2000. In addition to Dr. Satcher, the in-studio special features Dr. Lauro Halstead of the National Rehabilitation Hospital, Washington, DC; Hugh Gallagher, polio survivor and author, Dr. Harry Hull, senior medical officer of the World Health Organization's Polio Eradication Program; and William Sergeant, director of Rotary International's PolioPlus Program.

A PARALYZING FEAR: THE STORY OF POLIO IN AMERICA and CONQUERING FEAR EPIDEMIC DISEASE TODAY continue PBS commitment to present in-depth, timely documentaries.

Our thanks to Reny de Jong for forwarding the above. See the PBS Web Site copy of this press release for links to program schedules. Please note that we have had one report of a local station replacing CONQUERING FEAR EPIDEMIC DISEASE TODAY with another documentary about Salk. The Director of the film and Producer of the half hour program, Nina Gilden Seavey of the Center for History in the Media, had the following to say about such alterations

I am sorry that that your local public television station is making such a poor choice. After seeing my film, the last thing the public needs is more on Jonas Salk. What they will want is more information on the current-day issues raised by the film - which is why I produced the 1/2 program. Personally, this is why the PBS system makes me crazy.

See NewsBites 30th September for additional background material.

8th September 1998
PPS and SSDI: So far so good, BUT...

Dr. Richard L. Bruno writes...

THANK YOU For your letters to SSA AND CONGRESS! [See NewsBites 28th June] Take a look what you've accomplished, but look carefully at the BOLDFACE type:

Dear Dr. Bruno:

I was asked to reply to the President's request concerning our criteria for evaluating the late effects of post-poliomyelitis.

We are currently reviewing all of our medical criteria to determine if revisions are necessary. These medical criteria, the Listing of Impairments, describe specific impairments that are presumed to be severe enough to warrant finding a person disabled. We will consider whether to revise the present listing on anterior poliomyelitis to take into account any new knowledge and research about this condition. During this process, we will consult with you directly as requested by Senator Lautenberg.

You will be pleased to know that our neurologists attended the Medical Policy Forum held at Annapolis in July and led a discussion to assure that State and regional doctors and adjudicators are aware of the need to fully consider fatigue when evaluating post-poliomyelitis.

This is super! We're batting .500. State and regional doctors and adjudicators were made "aware" of fatigue as a disabling symptom thanks to your letters. Now ALL POLIO SURVIVORS NEED TO REMIND THEIR LOCAL ADJUDICATOR of the July, 1998 Medical Policy Forum Meeting in Annapolis UP FRONT when they apply for SSDI the first time, or on appeal, as well as including a copy of the POMS for Evaluation of the Late Effects of Poliomyelitis (24580.010).

However, note that THERE IS NO Listing of Impairments for the "late effects of poliomyelitis." Listings of Impairments are specific criteria for some specific disabilities, like MS. A Listing of Impairments was never created for PPS. Presently, the Listing of Impairments for MS is sometimes applied to "late effects of poliomyelitis," the focus being "muscle weakness or "motor disorganization." Any "present listing on anterior poliomyelitis" would not need revision since there is no "new knowledge and research about this condition" that would apply to PPS. Let's not let SSA do "the D.C. spin" and wiggle out on the details by possibly concluding that the "present listing on anterior poliomyelitis" does not need revision.

Please write another short letter to SSA and your Congress people [For addresses see NewsBites 28th June] (including the ones who didn't respond, maybe with a copy of the letter you received from those who did). Thank everybody profusely for the discussion of the late effects of poliomyelitis at the Medical Policy Forum Meeting and SSA's willingness to review SSA documents about fatigue.

BUT, make clear that, while we would like for there to be created a Listing of Impairments for "late effects of poliomyelitis," one does not currently exist. Please make clear that what we want first is to revise the POMS for Evaluation of the Late Effects of Poliomyelitis (24580.010) by expanding Paragraph "E," which describes fatigue as a cause of disability, to 1) include disabling cognitive symptoms (impairment of attention) and exhaustion and 2) note that fatigue (not muscle weakness or "motor disorganization") is the leading cause of work disability in America's 1.63 million polio survivors.

I can't thank you enough for using your precious energy to fight this fight. Thank you too for mailing me copies of the letters you sent and the responses you received.

We're batting .500 and the season isn't even over yet! If we can focus the attention of Congress and SSA on what we need (and not what they may -- may -- try to get away with) we will win the series for all time!

Again, my heartfelt thanks!

Happy Labor Day,

Dick

Dr. Richard L. Bruno
Chairperson
International Post-Polio Task Force
and
Director
The Post-Polio Institute
at Englewood Hospital and Medical Center Englewood, New Jersey 07631
Phone: (201) 894-3724 Toll Free: 1-877-POST-POLIO
Fax: (201) 894-0324
PPSENG@AOL.COM

Set your browser to:
http://members.aol.com/harvestctr/pps/polio.html
for the PPS Library and all of our papers describing our research and treatment of PPS.
Many of Dr. Bruno's papers are also available in the Lincolnshire Post-Polio Library and can be found listed under the catalogue entry for Bruno, Richard L., Ph.D..

7th September 1998
Support Group News (USA)

San Diego (CA) Polio Survivors Support Group

When: September 10, 1998 - 10:00 am to 12:00 PM.

What: Polio Survivors Support Group General Meeting & speaker Cindi Jones, editor of Mainstream Magazine.

Where: La Jolla Village Square Community Room 8650 Villa La Jolla, West of I-5 going North exit Nobel Dr. turn left enter shopping center. Room is to the right of AMC 12 Theaters Ticket Sales. See you there!

Who: Polio Survivors, spouses /care givers.

For contact information see their entry in our directory.

2nd September 1998
International Polio Congress

An International Polio Congress is to be held at the Friedrich Schiller University, Jena/Thuringia, Germany from the 30th October to 1st November 1998 under the auspices of Bundesverband [Federal Association] Polio e.V.

The congress will focus on psychological and social problems resulting from the former polio attack. It will inform survivors of the latest findings and it will show ways to broaden personal independence and self-sufficiency in living with this insidious disease.

Scheduled speakers include Professor Dr. B. Stueck, Dr. M. Havlova, Dr. F. Lønnberg, Dr. A. Sandberg, Dr. K. Roeleved, Professor Dr. Stegeman, Dr. Ch. Anders, Professor Dr. Ch. Scholle, Dr. A. Kemper, Professor Dr. G. Zwacka, Professor Dr. Agre, Dr. Tesche, Professor Dr. D. A. Trojan, CA Buschbeck, Dr. B. Bocker, Dr. U. Smolenski, Dr. B. Meister, Dr. W. Walter, Dr. S. Schumacher, Dr. Steinfeldt, Professor Ingolf Österwitz, Carola Hiedl, Dr. med B. Beck, Dr. Parker and Wendy Malisani.

Full details (in German) including booking and hotel information can be found at http://selbsthilfe.seiten.de/bv/polio/kongr98.htm
The above document is no longer available.

An English translation of the Introduction only is available at http://selbsthilfe.seiten.de/bv/polio/kongr98e.htm
The above document is no longer available.

1st September 1998
Support Group News (USA)

Polio Echo (Arizona)

Polio Echo of Arizona are meeting on Saturday 12th September when they will be holding a special advance showing of the 90 minute video of the film A Paralysing Fear: The story of Polio in America. The film by Nina Gilden Seavey of the Center for History in the Media at George Washington University is scheduled for National Broadcast on PBS in October [see Newsbites 10th September 1998]. Full details of the meeting can be found in the Coming Events section at the Polio Echo website.

Central Indiana Post Polio Support Group

The Central Indiana Post Polio Support Group is sponsoring a conference in Anderson, Indiana on October 2 and 3 (Friday and Saturday). If you are interested in attending, contact the coordinators, Marvin and Ellen Crim by email at mcrim1361@aol.com, or by snail mail at 338 W. 38th Street, Anderson, IN 46013, or by phone at (765)649-3648. The $25 registration fee needs to be in by September 25.

The only additional information on the conference we have at present is that Dr. Lauro Halstead is scheduled to attend. See the Lincolnshire Post-Polio Library catalogue under Halstead, Lauro S., MD