Lincolnshire Post-Polio Network - NewsBites
[ Reception ][ Library ][ Networking ][ Directory ][ What's New? ]

Archive
December 97

Short news items with a Post-Polio element gleaned from 'here, there and everywhere'. Contributions welcomed. Email linpolioweb@loncps.demon.co.uk. Please make it clear that your news item is for inclusion in NewsBites and include any source references.

31st December 1997

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:

The Times 31/12/1997 NewYears Honours Article
The Times 31/12/1997 New Years Honours List (Diplomatic and Overseas)

Further reading:
3001 The Final Odyssey
The Arthur C. Clarke Chapter of The Silicon Jungle

[ Index ]

21st December 1997

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 Directory

[ Index ]

19th December 1997

Each Saving Breath, The story of John Prestwich M.B.E.

by Richard Hill

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: richard@newsplus.enta.net
URL: http://www.newsplus.enta.net/

UPDATED REFERENCES
Polio Survivors on the Internet Directory - John Prestwich
Polio Virus, Vaccine and Eradication Directory - Virtual Museum of the Iron Lung

Forwarded to LincsPPN by Tom Walter

[ Index ]

3rd December 1997

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
Phone: 314/534-0475

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.

-End-

See also:
Lincolnshire Post-Polio Library Anticholinesterases in Post-Poliomyelitis Syndrome Daria A. Trojan and Neil R. Cashman

[ Index ]

2nd December 1997

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 to 'post-polio'.

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?"

Saucier adds,

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 effects.

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 Co.
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.

[ Index ]

DATELINE
31st December 1997
Arthur C. Clarke made Honorary Knight
*
21st December 1997
South African Post-Polio Syndrome Association article in Electronic Mail & Guardian
*
19th December 1997
Each Saving Breath, The story of John Prestwich M.B.E.
*
3rd December 1997
Preliminary Results of Trial Presented at AAPM&R
(G.I.N.I. Press Release)
*
2nd December 1997
Polio Takes Second Crack at Survivors
*
[ Latest News ]
[ News Archive }

[ Reception ][ Library ][ Networking ][ Directory ][ What's New? ]

The Lincolnshire Post-Polio Network
Registered Charity No. 1064177
An Information Service for Polio Survivors and Medical Professionals

[ Contact Details Here ]

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.


© Copyright The Lincolnshire Post-Polio Network 1997 - 2010.

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.
Primary Document Reference: <URL:http://www.ott.zynet.co.uk/polio/lincolnshire/archive/nbit9712.html>
Alternate Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/archive/nbit9712.html>
Last modification: 6th February 2010.
Last information content change: 6th February 2010.

Valid HTML 4.0!