|
More Polio News
Explaining Post-Polio Fatigue Type A Behavior or Pain
Richard L. Bruno, of the Collegeof Physicians and Surgeons, Columbia University, presented a new hypothesis about the cause of PPS at the third annual Gaylord Hospital Post-Polio Symposium in Meriden, Connecticut.
Bruno and Nancy Frick of Harvest Center in Hackensack, NJ, found that while physical overexertion was the most frequent cause of PPS, psychological stress was the second most frequent cause. "We had hypotheses to explain how physical or psychological stress could cause muscle weakness by tiring out motor neurons damaged by the polio virus," said Bruno, "but we had no idea HOW psychological stress could cause fatigue and pain."
Bruno reviewed the autopsy material prepared in the 1940's by David Bodian, Johns Hopkins neuropathologist. Bodian studied the brains of persons infected by the polio virus to discover how it entered the central nervous system. Bruno said, "Bodian discovered that 'in all cases of poliomyelitis an encephalitis exists, whether paralytic symptoms are present or not.' He discovered that polio-induced lessions in the anterior hypothalamus, in the median raphe nuciei and the reticular formation of the brainstem were very common and severe."
He explained that the anterior hypothalamus serves as the 'brake' on the brain's response to psychological stress. Polioencephalitis damages hypothalamic neurons and may 'release the brake' allowing an exaggerated stress response and oversecretion of corticosteroids during psychological stress.
"Corticosteroid secretion has been linked to failure of neurons by inhibiting their ability to use glucose. Corticosteroid secretion during stress could cause the metabolic failure of polio-damaged neurons in the median raphe, whose activity is thought to be responsible for maintaining wakefulness, and in the reticular formation, which activates the cortex and controls the ability to focus attention. Metabolic failure of these neurons would explain why people who had polio are overwhelmingly sleepy and fatigued and report that they are unable to focus their attention during and after psychological stress," said Bruno.
Behavioral evidence for an exaggerated stress response in people who had polio is suggested by the national survey finding that their Type A behavior score was 17 points higher than in non-disabled controls.
"Polioencephalitis-induced damage to the hypothalamus may physiologically predispose people who had polio to develop the hard-driving, highly stressed Type A personality," Bruno said. He continued: "Polioencephalitis also damages other brain areas, such as the periaquiductal gray. This damage may decrease the production of endorphins and explain our 1985 finding that people who had polio are twice as sensitive to pain as are controls." Thanks to POOW for this article.
Polio Outbreak Leaves Crippled Children, Questions
December 28, 2000
CONSTANZA, Dominican Republic (AP) - Sandy Torres sits in a wheelchair in the front of his sixth grade class, learning anatomy, though his own body is forever damaged by a disease that has scientists scrambling for answers.
Sandy, 13, came down with polio in September, nine years after scientists believed it had been eliminated from the Western Hemisphere. His mother said he was never vaccinated because she didn't know he needed to be.
"It's not easy watching your child, who ran and played like all the other children, and now he can't walk," Sylvia Altagracia Nunez said.
Sandy is one of six confirmed cases in the Dominican Republic. There is a seventh in Haiti, which shares the island of Hispaniola, and 15 suspected cases are being investigated by local health workers, the U.S. Centers for Disease Control and Prevention and the Pan American Health Organization based in Washington, D.C.
The outbreak indicated that the health care systems failed to follow through on a basic vaccination program, and it also raised larger concerns about the worldwide effort to eradicate polio.
For the victims, the questions are simpler - and harder to face. Will 3-year-old Erika Pimentel, who now drags herself across the floor with her hands, ever be able to run around the neighborhood, tiring her mother out like she used to? How will 6-year-old Alejandrina Arismendy, now unable to stand on her own, make it down the steep hill outside her home to school?
Polio is a highly infectious disease that usually strikes children under 5. It damages the spinal cord and brain, causing paralysis and sometimes death. It is transmitted by ingesting food or water contaminated by fecal matter of an infected person.
So far, investigators have determined that the outbreak occurred because thousands of children were not vaccinated, making both countries a prime breeding ground for a vaccine-derived mutation, like the one that infected Sandy.
In Constanza, a remote mountain town where the first cases appeared, officials estimate only 20 percent of children had received all three doses of the vaccine, said Socorro Gross, Pan American's representative here.
"All of the people involved either weren't vaccinated, or were only vaccinated once," Gross said. And the government wasn't pushing the vaccine or even making it available to all clinics.
"I had the vaccine here in a refrigerator but it was old, I couldn't use it," said Dr. Antonio Santos, director of Constanza's public hospital.
In an immunization drive in recent weeks, about 25,000 children - more than 95 percent - in Constanza and the surrounding region have been vaccinated, Gross said. A nationwide vaccination campaign was scheduled the weekend of Dec. 15-17. Haiti plans a vaccination blitz in January.
The outbreak raises larger questions about the campaign to eliminate polio: whether vaccinations can ever be stopped, and the type of vaccine being used in most countries. The World Health Organization hopes by 2002 to eliminate wild polio from the few countries in Africa and Asia where it still exists.
But after that, polio would still exist in the children who received the oral vaccine, a relatively safe version of the live virus. If the vaccinations stopped, those children might pass the disease on to unvaccinated children. And if the vaccine version of the disease circulated long enough in the population, it could mutate back into the deadly version, as apparently happened here.
The only other such case occurred in Egypt in the 1980s, infecting more than 30 people.
"This is a real problem because it highlights the point that we cannot predict what polio virus will do," said Dr. Vincent Racaniello, a professor of microbiology at Columbia University. Racaniello long has argued that the effort to eradicate polio cannot end when the wild virus has been eliminated.
He is among those who believe health workers will have to switch from the oral vaccine, called Sabin, to the older, costlier Salk vaccine that has to be injected but uses a killed strain of the virus that cannot mutate.
Pan American officials are resistant to the idea, saying Salk is not only too costly but too difficult to use in developing countries because it has to be administered by a professional.
In addition, the immunity from the oral Sabin vaccine is contagious, spreading from child to child and giving what experts call "herd immunity." As long as a high enough percentage of children are vaccinated directly, the few who are not can get the vaccine from the rest.
"Nearly four decades of experience with oral polio vaccine has shown that it is very safe and effective in preventing poliomyelitis," said Ciro de Quadros, Pan American's director of the vaccination program.
But the United States changed the protocol for polio vaccinations in 1997 to include the Salk vaccine, in order to prevent mutations. The Hispaniola outbreak does not threaten countries like the United States, where almost all children are vaccinated and are therefore immune to the wild disease and the mutation.
For Sandy Torres the real question is simple. "I ask God when I will be able to walk again, and if I can continue playing baseball."
Copyright 2000 The Associated Press. All rights reserved.
COLOMBO, Sri Lanka (AP) - The year 2001 got off to a painful start for science fiction writer Arthur C. Clarke, who spent New Year's Day resting. Clark, author of "2001: A Space Odyssey," suffers from post-polio syndrome, a condition characterized by fatigue and muscle and joint pain. It can strike polio survivors anywhere from 10 to 40 years after their recovery from polio.
Clarke had the disease in 1959. "It is really painful; I can't stand up," Sir Arthur said from his home Monday. "This is the first time that I have had this severe pain."
Clarke, 83, predicted space travel before rockets were tested
and foretold computers wreaking havoc with modern life. His "2001: A Space Odyssey" appeared as a novel and a movie in 1968. It is one of scores of fiction and nonfiction works he has produced in a career that began in 1959.
These next two articles come from Carolyn who can be reached at Cmareb@aol.com
Brain and Nervous System
Post-polio syndrome
On Nov. 10, 1949, Rosella Ann Salley gave birth to a healthy 8-pound boy. Two days later they both developed polio. She barely survived. Her baby, Duane Charles, didn't.
For years polio was one of the most feared diseases in America, responsible for crippling, paralysis and death. In 1952, according to the Centers for Disease Control and Prevention, it reached its peak in the United States with more than 12,000 paralytic cases. Shortly after, vaccines were developed that greatly reduced its spread. Today, nearly no one in developed countries gets polio.
But for some people, the past problems they had with polio now are reappearing in a condition called post-polio syndrome (PPS). The cause is unknown, but new research is beginning to yield a better understanding of this complex syndrome.
More than 300,000 polio survivors in the United States may be at risk of PPS, according to the National Institute of Neurological Disorders and Stroke (NINDS). The NINDS estimates that the condition affects between 25 percent and 50 percent of these survivors, perhaps more depending on how the disorder is defined.
Mimics other diseases
Post-polio syndrome — the late effects of polio in some persons — refers to a cluster of disabling symptoms that appear decades after the initial illness. These symptoms — muscle and joint pain, general fatigue and weakness — are similar to those commonly associated with other disorders, such as arthritis, fibromyalgia http://www.mayoclinic.com/home?id=DS00079&bucket=staged,
chronic fatigue syndrome
and scoliosis
Rosella was diagnosed with scoliosis in 1967. It's the primary symptom affecting her today due to post-polio syndrome.
"My main problem at the moment is scoliosis due to polio," says Rosella. "The condition makes me tip to the left, and I can't hold myself up. Because of scoliosis I have a pinched nerve that comes and goes. It gets bad and then it goes away."
Three indicators
To confirm a diagnosis of PPS, doctors look for three indicators:
**Previous diagnosis of polio. This often requires finding old medical records or getting information from older family members, because acute polio primarily occurs during childhood. The late effects of polio usually occur in people who were age 10 or older during the initial attack of polio and whose symptoms were often severe.
**Long interval following recovery. People who recover from the initial attack of polio often live for many years without further symptoms. The onset of late effects varies widely but typically begins 30 to 35 years after the initial diagnosis.
**Gradual onset. Weakness tends to be imperceptible until it interferes with daily activities. You may awaken refreshed but feel exhausted by the early afternoon, tiring after activities that were once easy.
Rosella says that she was in good overall health between 1952 and about 1987. She says that she felt fine and thought she was doing well. In addition to a 2-year-old child she had before the death of her baby boy, she had five more children. She says that she even took a trip to the Grand Ole Opry in 1952 and climbed 54 steps while she was there. In 1956, she worked outside of her home cleaning houses, as well as caring for her family and home.
"If I could stay like that, my life wasn't going to be too difficult, but since [19]86-87 I have really gone downhill," she says. Life changed for Rosella when PPS symptoms started troubling her again. "I have lived with having to do things differently. If I have to get up off the floor, I have to crawl to the stairway to get up. I used to get up with a stool, but that doesn't work anymore."
Cause unknown
Post-polio syndrome doesn't appear to be a new infection or the reactivation of a long-dormant virus. And because some people have developed PPS in ages as early as their 30s and 40s, the aging process has been ruled out as the primary cause.
A Mayo Clinic study that has tested people for more than 15 years who formerly had polio has found that they don't have new nerve or muscle deterioration, as had been suspected. Two-thirds of the people who had symptoms of post-polio had other conditions such as degenerative joint disease or diabetes
that might have accounted for some of their symptoms.
Some doctors attribute post-polio syndrome to chronic overuse of muscles and joints that apparently were undamaged by the initial phase of polio. For example, if your left leg was disabled by polio, it's possible that your right leg may develop complications later in life because its muscles and joints have had to overcompensate.
Treatment
Because the symptoms often vary, there is no one specific treatment for post-polio. If you had polio and experience new muscle weakness or pain, see your doctor.
**Medication. Medications, including aspirin and other nonsteroidal anti-inflammatory drugs, may help.
**Therapy. An occupational or physical therapist may be able to analyze the ways you move during work or leisure and suggest techniques and stretching exercises to help reduce muscle fatigue.
**Exercise. Exercise to maintain fitness is important, but be cautious in your exercise routine and daily activities. Avoid overuse of your muscles and joints. Do exercises that aren't as strenuous, such as swimming or water aerobics, and do them at a more relaxed pace than normal.
**Surgery. For some people, treatment of a specific source of their pain works well. For instance, you may want to consider hip replacement surgery if your hip pain is due to wear and tear that has worn out the joint.
Rosella says that she takes aspirin to alleviate some of her pain. Her doctors have told her to take it easy — to "rest it, not use it." It's difficult for her not to be as active and to accept her limitations, but she's trying to stay positive. She says, "I'm getting older but I have great determination. I'm going to do it and I'll be OK somehow."
Years later, polio survivor fights nasty after-effects
Saturday, June 2, 2001
By BOB GROVES
Staff Writer
About 10 years ago, actress Christopher Templeton started feeling unusually fatigued, too exhausted to even take out her own garbage. At first, she chalked it up to "just feeling older and tireder.
"Templeton was a star of the soap opera "The Young and the Restless," and had been for nearly a decade with no problems.
At 39, she still wore a leg brace and walked with a cane -- reminders of the infantile paralysis she contracted at age 6 months. She had survived polio and pursued a career for 11 years as the most prominent television performer with a visible physical disability.
Then the fatigue and weakness set in, even in her "good" leg, the one unaffected by the polio. She began having pain in her back and shoulders.
"I couldn't take the extra stairs or keep up power shopping," Templeton, now 49, recalled during a visit this week to the Post-Polio Institute at Englewood Hospital and Medical Center. "I couldn't walk or sit or stand for more than 20 minutes at a time."
The symptoms worsened. Templeton said she finally had to face what she had suspected all along: She had post-polio syndrome -- an after-effect of her childhood disease that strikes, like a time bomb, years later.
Post-polio syndrome (PPS) is a collection of symptoms -- such as fatigue, pain, and weakness -- affecting polio-damaged nerves worn by years of over-compensating for nerves that were killed by the disease. It is not a relapse, or a return of the viral infection.
By 1994, it was too much for Templeton. She filmed two TV movies-of-the-week -- a "Columbo" with Peter Falk and "Hostage for a Day," directed by John Candy -- then retired. Last winter, she had breast cancer surgery.
"All of a sudden my whole body was falling apart -- not just my legs and hips, but my arms, shoulders, and wrists," she said. "I blew out a whole bunch of things. I thought it was time to be human again."
PPS affects 1.63 million polio survivors in the United States -- including 50,000 in New Jersey -- and 20 million people worldwide, said Richard Bruno, director of the Post-Polio Institute at Englewood.
There are an additional 158,000 Americans who may have PPS resulting from a mild, non-paralytic form of polio, contracted before the Salk and Sabin vaccines were distributed beginning in the mid-1950s, Bruno said.
PPS is not curable, but it is "very treatable, if people take care of themselves," Bruno said. "The problem is that post-polio people don't want to slow down," he said.
Many polio survivors, Bruno said, are highly active and competitive "Type-A personalities," who became overachievers probably to compensate for their disability.
Templeton thinks her drive is also the result of growing up the oldest of four siblings. She was one of 13 kids in her suburban Chicago neighborhood who contracted polio in 1952.
"A lot of people were down one day and up the next. It was just a weird disease that affected the top half or bottom half of your body. There was no rhyme or reason to what it would do," she said.
Last fall, she put her things in storage, left Hollywood, and moved to Florida to care for her ailing stepfather. She found Bruno and the Post-Polio Institute on the Internet and arranged a visit.
This week, Templeton underwent a medical evaluation by Dr. Jerald Zimmerman, chief of rehabilitation and medical director of the institute. She also had a consultation with Bruno on behavior modification, exercise, and diet.
"Type-A personality people are very bright and focused on doing things for others. Polio patients often don't pay attention to themselves," said Bruno, a psychologist who specializes in neurology. "They get up too early, go to bed too late, do laundry, miss lunch, run to a meeting, do more laundry. It makes no sense what they're doing to their body."
For years, polio patients were told to try harder, to "use it or lose it," Bruno said. "They were told 'more is better.' The truth is the opposite," he said.
The old maxim "less is more" applies as much to post-polio therapy as it does to acting, Bruno said. Bruno has Templeton fill out a daily log of her activities so she can see where to cut back. He also suggests that she eat less fat and more protein.
"I just started to slow down and rest a bit," Templeton said. But, she said, "I need to exercise, because I'm basically a total slug."
So Templeton does a moderate upper-body workout three times a week, swims twice a week, and does some walking for lower-body strength.
PPS patients can lose up to 7 percent of their motor nerve function each year, "so they have to back off and listen to what their bodies are saying. That's hard for Type-A people," Bruno said.
Templeton, who is single, is taking up the slack with painting and reading. "I don't want to be a vegetable," she said.
She drives a car with a specially adapted gas pedal, walks with canes, and uses a lightweight wheelchair when necessary. For now, she has rejected Bruno's suggestion that she travel on a scooter or get a brace for her good leg, which has about 65 percent function, she said. At the mall, she parks close to the stores and stops shopping before getting exhausted.
Templeton has received numerous national awards for her work as a celebrity spokeswoman on behalf of PPS. She dislikes being called a "poster child" for the cause, because "the term has a stigma to it," she said.
PPS patients have to stop being in denial and overdoing it, she said.
"I say, stop kidding yourself and start dealing with it. It's not scary if you just do it," she said. "Fear is stupid. It's only going to make it worse. If you keep beating yourself up, and unless you start taking care of yourself, you won't having anything left."
She said she could probably return to Hollywood now that she has adapted and knows what to do.
"I found it so easy to adapt. It was a lot easier than I anticipated, just not vacuuming, not mopping," she said. "I believe in creative adapting. If you can't adapt the way you're told to, then find another way."
Copyright © 2001 North Jersey Media Group Inc.
PPS'rs and Breathing Problems
Do you often run out of breath when talking?
Do you sometimes start to pant when exerting yourself even slightly?
Do you feel breathless and get sweaty after a meal?
Do you wake up at night on an hourly basis and usually have to go to the bathroom?
This could indicate a condition called hypoventilation (under ventilation) due to neuromuscular disease, i.e. polio. The lungs are healthy but weakened respiratory muscles impair the movement of air in and out of the lungs. Mechanical ventilation such as a bipap could be indicated. Check with your pulmonologist, one who is familiar with PPS.
|