|Short news items with a Post-Polio
element gleaned from 'here, there and everywhere'. Contributions welcomed.
Please make it clear that your news item is for inclusion in NewsBites
and include any source references.
30th September 1998
"A Paralyzing Fear: The Story of Polio in America"
Watch for it on Public Broadcasting in the U.S. starting Monday, October
"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
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/
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
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
"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.
"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/
The above document is no longer available.
10th September 1998
A PARALYZING FEAR: THE STORY OF POLIO IN AMERICA
CONQUERING FEAR: EPIDEMIC DISEASE TODAY
KSPS Public Television in Spokane, WA
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
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
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,
Dr. Richard L. Bruno
International Post-Polio Task Force
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
Set your browser to:
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..
San Diego (CA) Polio Survivors Support
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
Who: Polio Survivors, spouses /care givers.
For contact information see their
entry in our directory.
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.
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
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 email@example.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
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