|Short news items with a Post-Polio element gleaned
from 'here, there and everywhere'. Contributions welcomed. Email email@example.com.
Please make it clear that your news item is for inclusion in NewsBites
and include any source references.
Arthur C. Clarke made Honorary Knight
Dr Arthur Charles Clarke, CBE, has been made a Knights Bachelor in the
Diplomatic & Overseas New Years Honours List for services to literature.
From UK ITN News:
Visionary science fiction writer Arthur C Clarke has been made an honorary
knight. Most widely known for 2001: A Space Odyssey, Mr Clarke has been
a prolific and best-selling author for four decades with an uncanny
ability to predict the impact of technology. He foresaw satellite communications
in 1945 and predicted the first Moon walk - which happened in 1969 -
a few years later. He wrote both the novel 2001 and the screenplay of
Stanley Kubrick's celebrated film. The Somerset-born author has lived
in Sri Lanka for 40 years, drawn by the friendly people and excellent
scuba diving, his former passion. He keeps in touch with his many fans
and prolific correspondence via E-mail. Director Stephen Spielberg and
scientist Carl Sagan were both admirers, and he has lectured all over
the world. Now confined to a wheelchair by the effects of polio, he
celebrated his 80th birthday on December 16 and published his latest
book 3001: The Final Odyssey, last spring. He was made a CBE in 1989.
Reports on the New Years Honours List can also be found at BBC
News, The (London) Times
and The (London) Telegraph:
Times 31/12/1997 NewYears Honours Article
Times 31/12/1997 New Years Honours List (Diplomatic and Overseas)
3001 The Final Odyssey
The Arthur C. Clarke
Chapter of The Silicon Jungle
South African Post-Polio Syndrome Association article
in Electronic Mail & Guardian
The 9th December issue of South Africa's Electronic
Mail & Guardian highlights Post-Polio Syndrome and the newly-formed
South African Post-Polio Syndrome in an article entitled Polio's
delayed second strike
Forty or fifty years after childhood polio, victims encounter their
disease once more in a different and little understood form called post-polio
syndrome. Now a South African association has been set up to help survivors,
says organiser PRISCILLA WEBSTER
The article goes on to explain the background to PPS and the new Association.
We who are polio survivors are no longer those cute little children
who wore callipers or who were wheeled around in wheel chairs. In fact
no one gets excited about us at all and it is to this end that we are
going to have to 'get excited about ourselves' and live our lives with
support and encouragement.For this reason, a South African Post-Polio
Syndrome Association has been formed.
There will be chapters in all provinces where PPS sufferers can get
together under the auspices of the Association.
The full article can be found http://www.mg.co.za/mg/news/97dec1/9dec-polio.html
Further details of The South African Post-Polio Syndrome Association
can be found in their entry in our LincsPPN
Each Saving Breath, The story of John Prestwich M.B.E.
John Prestwich lives just minutes from death. Paralysed, unable even
to breathe, a mechanical ventilator keeps him alive. If it fails, John
will be unconscious within three minutes and dead within five. He holds
the Guinness World Record for being completely dependant on a ventilator
for over 40 years.
His ventilator gives him one thousand breaths an hour, eight and a half
million a year and over 350 million since he contracted polio on his seventeenth
birthday on the 24th November 1955.
Full text at -- http://www.newsplus.enta.net/jprest.htm
See also "The History of the British iron lung 1832 - 1995"
by Richard Hill.
Full text at -- http://www.newsplus.enta.net/ironlung.htm
Richard Hill - Writer and Journalist
e-mail: firstname.lastname@example.org URL:
Polio Survivors on the Internet Directory - John
Polio Virus, Vaccine and Eradication Directory - Virtual
Museum of the Iron Lung
Forwarded to LincsPPN by Tom Walter
PRELIMINARY RESULTS OF TRIAL PRESENTED AT AAPM&R
(G.I.N.I. Press Release)
FOR IMMEDIATE RELEASE
9 AM EDT, November 30, 1997
Contact: Joan L. Headley
Pyridostigmine in PPS: No significant impact on quality of life,
fatigue, isometric muscle strength
PRELIMINARY RESULTS OF THE MULTI-CENTER, placebo-controlled NAPPS (North
American Post-Poliomyelitis Pyridostigmine Study) trial of pyridostigmine
(Mestinon) in post-poliomyelitis syndrome (PPS) were presented on November
15 at the annual meeting of the American Academy of Physical Medicine
and Rehabilitation (AAPM&R) in Atlanta by Daria A. Trojan, MD, Assistant
Professor at the Montreal Neurological Institute and Hospital of McGill
University in Quebec. Pyridostigmine was not found to provide significant
benefits with respect to quality of life, fatigue, or isometric muscle
strength compared with placebo, although a trend was noted towards increased
strength in very weak muscles.
THE NAPPS STUDY WAS INITIATED BY THE PARTICIPATING INVESTIGATORS and
received support from ICN Pharmaceuticals, the company that markets and
distributes the medication (Mestinon is currently approved for the treatment
of myasthenia gravis). One hundred and twenty-six (126) patients participated
in the trial; 64 received pyridostigmine and 62 received a placebo. All
patients completed the double-blinded study, a study where both the patients
and the study personnel (investigators and evaluators) are unaware of
which patient received the pyrido-stigmine or the placebo. During the
six-month course of the study, 70.3 percent of patients on pyridostigmine
and 72.6 percent of patients on placebo had at least eighty percent (80%)
compliance with the medication.
IN THE MAIN DATA ANALYSIS, which included all patients in the trial,
the study did not show a difference between pyridostigmine and placebo
patients in terms of their health-related quality of life, fatigue (as
measured by two fatigue scales), and most measures of isometric muscle
strength. Similar results were noted for the subgroup of patients who
were assessed as being compliant with the use of the medication. However,
Dr. Trojan noted, there was a nonsignificant increase in strength in very
weak muscles (1% to 25% of predicted normal strength) in pyridostigmine-treated
patients of six (6) months of treatment. In general, the study medication
was well tolerated: four (4) severe adverse events were observed during
the trial, three (3) of which occurred in pyridostigmine-treated patients.
THESE RESULTS, which showed no statistically significant effect of pyridostigmine
on the outcomes assessed, were unexpected by the investigators. Dr. Trojan
commented that the results did not reflect the investigators' clinical
impression that there appeared to be a clear benefit with the medication
in at least some patients. It is possible that another study that utilizes
different or more sensitive outcome measures (such as measures of muscular
endurance, physical activity, or disease-specific quality of life) might
yield different results, she noted. The open-trial phase of the NAPPS
study is on-going, and further data analyses are in progress.
Lincolnshire Post-Polio Library Anticholinesterases
in Post-Poliomyelitis Syndrome Daria A. Trojan and Neil R. Cashman
Polio Takes Second Crack at Survivors
In a front page article in Tulsa World On-Line dated
30th November 1997 (see below for instructions
on how to access archive for full article), Heather Saucier, World Staff
Writer, describes in commendable detail the problems confronting polio
survivors today. She begins by telling the story of Cathie Holland.
On a leisurely walk back from a Camp Fire girls meeting in Colorado,
Cathie Holland stopped dead in her tracks.
"I couldn't move," Holland, 65, remembered. "My muscles felt like molasses."
She returned to Oklahoma and told her doctor how her legs had abruptly
failed her, how the experience had triggered memories of when she contracted
polio at age 5 and couldn't move.
Those old memories would soon be a reality, the doctor told her. Polio
might be ancient history, but its paralyzing effects were coming back.
Saucier then gives a brief lesson in history, the epidemics of the '40s
and '50s and the development of the Salk and Sabin vaccines, before returning
Then, as slowly as childhood fades from memory, effects of the virus
crept back. Some 30 to 40 years later, victims complained to their doctors
of sore joints, unexplained weakness and muscle pain.
We are introduced to Wanda Walker, "a post-polio patient who first noticed
excessive fatigue in 1989."
"When I have a good day, I want to do everything, and the next few
days, I pay for it," Walker says, adding that her arms are slowly giving
out. "It's frustrating, because you still have lots and lots of things
to do. You have to do a little bit, then rest, then do a little bit,
then rest. It takes forever to get things done."
Saucier explains that Walker "like many realistic post-polio patients,
is considering assisted living."
"I do feel I'm slipping a little bit every year," she [Walker] says
with a sigh. "What else can you do except deal with it?"
The article next turns to a number of experts in the post-polio field
for a 'situation report'. Dr. Frederick Maynard, M.D., chairman of the
Department of Physical Medicine and Rehabilitation at Case Western Reserve
in Cleveland, explains in a telephone interview, "Doctors still struggle
to define post-polio syndrome." He continues
"A consensus is beginning to build as to exactly how to define post-polio
syndrome, because technically the syndrome is a collection of symptoms."
There is no test to detect post-polio. Instead, the syndrome must be
diagnosed through the process of exclusion. Post-polio's symptoms --
muscle pain, excess fatigue and the wearing of joints -- closely resemble
other diseases such as Lou Gehrig's, chronic fatigue syndrome and heart
disease, Maynard said.
Eliminate all the possibilities, and post-polio seems a plausible diagnosis
-- especially when patients complain of a "new" weakness and are polio
survivors, Maynard said.
Dr Annie Venugopal, a physiatrist in Tulsa observes,
Many first notice post-polio symptoms when dressing themselves or climbing
stairs, she said. Some experience an intolerance to cold temperatures
or memory loss triggered by excess stress, she added.
Saucier goes on to describe 'denerevation exceeding reinnervation' and
other theories from the National Institute of Neurological Disorders and
Stroke. She continues,
It is estimated that up to 50 percent of polio victims will experience
post-polio. Polio and post-polio research is not high on most scientists'
list of things to take care of.
Sunny Roller of the Post-Polio Research and Training Program reportedly
puts it even more bluntly,
"Polio isn't the most popular thing to treat or study, because there
aren't a whole lot of us in one area, so they (doctors) don't see a
lot of us. Some so-called scholars have said, well, we're a dying breed
and why bother?"
Obtaining funds for medical research is as difficult as a bill collector's
job. So post-polio advocates take alternative routes for money. They
preach to Congress that researching polio will benefit people suffering
from chronic motor neuron disabilities, who also fall prey to delayed
On medications the article reports,
So far, no medications have profoundly affected fatigue-worn joints.
Over-the-counter pain killers, nonsteroid anti-inflammatories, anti-depressants
and some narcotics help with pain, Venugopal said.
The medication Mestinon, used for other diseases, is being tested to
see if it will lower fatigue in post-polio patients, Maynard said. If
it is proved effective, it will be the first drug shown to be beneficial
for fatigue, he said. Results are expected soon. [See NewsBites 3rd December 1997]
Saucier ends on an advisory note included here in full.
The best advice doctors can give post-polio sufferers is to take it
easy. Patients should preserve their muscles by simplifying their lives,
slowing their pace and resting frequently.
It's a thought that sends the patients' hearts racing.
"In the early '50s, they were told to push because they would be paralyzed.
It worked then," said Glenda Whitsett of Hillcrest Center for 55 Plus.
"But 40 years later, the neurons weakened. To continue to push this
time doesn't work."
Most polio survivors are described as having type A personalities:
very active, motivated and determined. With a history of moving forward
at record rates, it's no wonder post-polio patients find it difficult
to reduce their speed.
"You can grow old gracefully with this, too," Maynard says. "A lot
of it depends on your psyche and how you react to what's going on."
He says the patients' reaction can make the symptoms worse or seem like
"they go away."
He recommends that patients take periodic rests during the day or spend
part of a day in a wheelchair to ease leg pressure. Other suggestions
are to spread chores evenly throughout the week and to walk with adaptive
devices, such as leg braces, for an efficient stride.
"People with the problem -- there is help for them, even if there is
no cure," Maynard says. "The pain can be reduced, if not eliminated.
There are a lot of ways of keeping people functioning and productive
and happy in life, even if not in the same old way."
Original Article Copyright © World Publishing
To locate complete article in the Tulsa World Archives, go to their site
search facilty and search on the string polio. Thanks
to Tom Walter for this pointer.
Our thanks to Cleo Kiernan for bringing the article
to our attention.