Polioforever's Blog

Post-Polio

Post-Polio Syndrome (or sequelae, PPS) was recognized in the 1980s, diagnosable since 1983. Richard L. Bruno, author of The Polio Paradox [excerpts below] and founder of the Post-Polio Institute, has been a leader in recognizing the lack of understanding and treatment available to polio survivors. But many post-polio sufferers were, in fact, never diagnosed with an originating polio infection. Some of these well-known post-polio patients, such as Arthur C. Clarke, appear in the Adult Polio page.

 

Below is an endorsement of Dr. Bruno (PhD in physicopsychology) :

http://www.enotalone.com/article/5188.html   ” There are nearly two million North American survivors of the polio epidemics that terrorized the world during the middle of the twentieth century. More than half are now experiencing Post-Polio Sequelae—overwhelming fatigue, severe muscle weakness, and chronic pain. In this blueprint for well-being Dr. Richard Bruno describes the cause and treatment of PPS. Drawing on his two decades of research, he also explains the remarkable parallels between the polio epidemics, PPS, and today’s epidemics of fibromyalgia and chronic fatigue. His findings will astonish—and change the lives of many; for example, Baby Boomers diagnosed with CFS, who were born before the discovery of the polio vaccine, may have had a mild case of polio in childhood and may actually have PPS today.”    The Polio Paradox is a book about “… a medical mystery… an exposé about child abuse by the medical profession… the story of polio survivors, their trials and triumphs…a memoir of a scientist treating a “new disease”…Unbearable fatigue; leg and arm weakness; burning muscles and joints; head, back, and neck pain; trouble sleeping, breathing, and swallowing….Although polio epidemics are a nightmare from the past, millions of middle-aged polio survivors are today being disabled by these Post-Polio Sequelae (PPS), the sequel to having had polio.”

“Now PPS pioneer Dr. Richard L. Bruno, founder of The Post-Polio Institute and the world’s leading expert on PPS, reveals: How damage done by the polio virus decades ago set the stage for new symptoms today; The physical and emotional battles of polio survivors—including their Herculean struggles to become “normal” and the terror they feel as PPS threatens to strip them of their hard-won abilities; The Post-Polio Institute program that relieves symptoms, helps stop their progression, and helps increase the patient’s ability to function; How to treat cold intolerance, insomnia, sleep apnea, nighttime muscle twitching, and hypoglycemia; The greatest challenge in dealing with PPS—the psychological scars left by the polio experience.”

“Dr. Bruno then goes further. Outlining the remarkable similarities between PPS, chronic fatigue syndrome, myalgic encephalomyelitis, and fibromyalgia, as well as the nearly seventy-year history of chronic fatigue outbreaks that occurred at the same time as the polio epidemics, he shows how The Post-Polio Institute program is equally effective in managing PPS, chronic fatigue, and chronic pain.”

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Information

http://health.kosmix.com/topic/Post-polio_syndrome/Guides-and-Articles

Institutes

Sister Kenny Post-Polio Institute, established 1982 http://www.allina.com/ahs/ski.nsf/page/postpolio

From the Post-Polio Institute, Englewood, NJ  http://74.6.239.67/search/cache?ei=UTF-8&p=the+post+polio+institute&rd=r2&fr=yfp-t-701-s&u=www.state.nj.us/health/cd/documents/post-polio-consumers.pdf&w=post+polio+institute+institutes&d=TE7fkt29T7gj&icp=1&.intl=us&sig=4KktkvveqsoxuIZksbE4og

Organizations

http://www.postpolio.org/

http://www.cssa-inc.org/Articles/Childhood_Polio.htm

The Discussion

http://www.lcmedia.com/mind998.htm       ..” Although there has been no major epidemic for over forty years, there are more people in this country paralyzed by polio than multiple sclerosis or stroke, yet for 10 years Congress has refused to put money into polio research.”

You may e-mail Dr. Bruno at PPSENG@aol.com at the Post-Polio Institute at Englewood Hospital in New Jersey. The Institute has a special program to treat out-of-town patients involving follow-up care by phone, e-mail and/or fax. Call them toll-free at 877-767-8765. You can reach Dr. Lauro Halstead at the National Rehabilitation Hospital, (202) 877-1653, or send him e-mail at lsh@mhg.edu. You may also want to view more information about his new book, Managing Polio. You may also want to visit the Licolnshire Post-Polio Network Library online for a wealth of additional information, including a reprint of Dr. Halstead’s article in Scientific American.

More information about polio and post-polio syndrome is available from The International Polio Network (Gazette International Networking Institute) at 314-534-0475; from the Post-Polio Syndrome Central Web Directory; from The Polio Society, at 301-897-8180; and from Sparkie Lujan’s group, The P.R.Y.S. (Polio-Remember Your Strength) Foundation at 406-626-4600 or 1-888-PRYS-CAN.

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The Polio Paradox

Excerpts from The Polio Paradox, 2002, by Richard L. Bruno who estimated 1.63 million polio survivors in the US. [p6] “There were more polio survivors than those with Parkinson’s disease, multiple sclerosis and spinal cord injury combined”…”the cause and treatment of PPS involved both body and mind”, or Dr. Bruno’s specialty: physicopsychology, for which he holds a PhD.
[p12] “There are clear parallels dating from as far back as 1935 between polio and what in the 1980s came to be called Chronic Fatigue Syndrome”…”Twenty million more individuals with a variety of disabilities..are also experiencing fatigue, muscle weakness, and pain in mid-life, and seeing their abilities ebb away”
[p15] “In 1875 an unusual case was presented to the Society of Biology in Paris. A nineteen-year-old patient had had polio when he was six months old that paralyzed his left side…The young man had recovered partial use of his left arm and leg and became a tanner, which required him to use his arms to pull heavy, wet hides out of vats of acid. By the time he was seventeen, this French patient reported fatigue and a feeling of heaviness in his right arm, the arm that had apparently not been affected by the polio. His right arm and leg both became weaker and smaller”…
   On hearing this presentation, the renowned French neurologist Jean-Martin Charcot concluded that the young tanner’s new weakness was due to overusing his stronger right arm, damage done by the poliovirus somehow having ‘moved’ from the left side of his body to the right.
   That same year, three other French doctors described other polio survivors who had developed muscle weakness and atrophy, a shrinking of the muscles, fifteen to almost thirty years after they had polio. From 1875 to 1900, twenty-four articles appeared in European medical journals describing 30 additional polio survivors experiencing new weakness and sometimes atrophy..in limbs that obviously had been affected during the polio attack, but also in limbs that had..been unaffected. In 1899 British doctor William Hirsch reviewed all the cases reported during the nineteenth century. He concluded that there were three possible causes for late-onset weakness in polio survivors: (1) The poliovirus had damaged spinal cord motor neurons –the cells that make muscles contract– making them vulnerable to some other disease later in life; (2) Certain individuals were susceptible to developing motor neuron diseases..that allowed them to get polio as children and then develop another disease called ‘progressive muscular atrophy’ later in life; (3) Spinal cord motor neurons had been ‘scarred’ by the poliovirus, setting the stage for a ‘flare-up’ at a later date which caused new weakness.
[p16]  Hirsch was the first to suggest that the poliovirus could somehow damage neurons early in life, damage that..caused new muscle weakness many years later.
   In 1903 Charles Potts wrote the twentieth century’s first article on the late effects of polio –the first to appear in an American medical journal in which he too reviewed the nineteenth-century cases. Potts concluded that two of the polio survivors described had ALS –amyotrophic lateral sclerosis..(Lou Gehrig’s disease)– a fatal disease that causes progressive paralysis of muscles throughout the the body as a result of the death of the spinal cord motor neurons. However, Potts added that the overwhelming majority of the polio survivors described thus far..did not have ALS but instead had progressive muscular atrophy [as] Hirsch had mentioned, a disease of unknown origin…
In 1936, New York neurologists Salmon and Riley..supposed..the new and frightening notion that the poliovirus might lie dormant in the spinal cord and somehow cause muscle weakness decades later…
[p17] The dearth of articles between 1936 and 1960 about the late effects in polio survivors is undoubtedly due to polio’s incidence reaching epidemic proportions. All of medicine was focused on dealing with the acute problems being experienced by the hundreds of thousands of individuals infected with the poliovirus during those years, and on developing a polio vaccine. But articles about late-onset problems appeared again. A 1962 British paper by K.J. Zilkha was the first to follow the course of muscle weakness in polio survivors over many years…
In 1970, three British lung specialists reported…polio patients who were experiencing not only muscle weakness but also “excessive fatigue”, “breathlessness”, an inability to concentrate, drowsiness, and “severe attacks of sleepiness”. These patients also reported “abnormal sensitivity to cold, especially of the extremities”…
[p18] And in 1980 a group of Italian doctors…concluded that although only one hundred cases had been described in the preceeding 105 years, late-onset problems in polio survivors were “far from rare”. They agreed..that late-onset symptoms represented a “new process distinguishable from the old disease”.
Chapter Three “The Guided Missile”…
[p20].. quoting researcher David Bodian: “The average number of spinal cord motor neurons that are destroyed by the poliovirus is almost 50%. However, nonparalytic polio may be associated with severe neuron damage in the spinal cord. What is more, some with nonparalytic poliomyelitis do not have any damage in the spinal cord but have charateristic damage in the brain, which is more extensive than in some who did have paralysis. All available evidence shows conclusively that every case of polio exhibits damage in the brain. The poliovirus is capable of producing an encephalitis, with or without symptoms, in the absence of any damage to the spinal cord. As far as the pathologist is concerned all cases of polio are encephalitic”.
[p21] It’s amazing that something so small can do so much damage…But the poliovirus doesn’t attach to and damage just any cell. It is a ‘guided missile’ that does one thing: seek out, damage, and destroy the neurons that “activate” you –the ones that activate your brain and muscles. The poliovirus is the perfect human “Off switch”…
[p23]  The existence of dozens of poliovirus strains makes it clear that polioviruses mutate inside people and can change their virulence. In fact, experiments in animals show that the passage of poliovirus –infecting one animal with a poliovirus, having that animal infect another, and so on– can increase virulence. As polioviruses passed from person to person during the middle of the twentieth century, they apparently became more virulent, causing more paralysis and killing more people in 1950 than they did in 1920…
[p24]…Poliovirus released from both your tonsils and intestines also traveled to the large lymph nodes under your arms…finally, about ten days after you were infected..huge amounts of virus spilled into your bloodstream..[carrying] its deadly cargo toward its intended destination : the neurons in your brain and spinal cord.
[p25]  Virus-laden blood flowed up into your head and found “leaky” places in the brain’s blood vessels, where poliovirus flowed into the brain. At the same time, infected monocytes passed throught the walls of brain blood vessels acting like ‘poliovirus taxis’ that also allowed virus to enter the brain…
[p26] Once inside those neurons..[they] travelled inside neurons to penetrate more deeply…Then the poliovirus could head south, descending inside spinal cord neurons and ending up in the motor neurons…
   There’s yet a third way poliovirus could reach brain and spinal cord motor neurons…such as [flowing] out of the Peyer’s patches and enter the vagus nerve –the nerve that makes the intestines contract– inside which they can travel all the way up to the brain…What’s more, motor neurons are covered with poliovirus receptors where they make contact with your muscles. When your blood was full of virus, damaging a muscle and puncturing a blood vessel could bathe neurons with virus…children whose muscles had been slightly daamaged by an injection were up to ten times more likely to get paralytic polio –and were most often paralyzed in the limb where they received the injection.
   After a poliovirus latches on..to the surface of a neuron [it] causes it to ‘unzip’, releasing its contents inside the neuron. [These are] about a dozen individual proteins..that shut down and then literally break apart the ‘factories’ that manufacture [what] a neuron needs…
[p27]..the neuron can no longer make neurochemicals –the proteins that allow one neuron to talk to another and that allow motor neurons to make muscles contract. When neurochemicals stop being made, the neuron’s ‘OFF’ switch id thrown.
[p29] The poliovirus is remarkable in its ability to invade neurons. In the 1940s..Bodian found that 96% of motor neurons were infected by the poliovirus if you had any paralysis at all!
   But..on average, 50% of all motor neurons are destroyed…Bodian discovered that at least 60%..must be killed before [a] muscle shows any weakness at all.
[p30] Unfortunately, there’s even more to the aftermath of polio than losing about half of your motor neurons…those recovered neurons were never the same as they were before the poliovirus invaded. Damaged and rebuilt neurons are smaller and also have shrunken axons –the cable-like extensions that travel out..to connect with muscles.
[p31] What’s more, the microscopic tubules within the neurons were ‘plugged’ with debris that was probably created when the poliovirus broke apart the neuron…like clogged pipes, plugged tubules can’t carry all the proteins, nutrients, and neurochemicals where they need to go…
[p33] In Latin,[Greek actually] polio means ‘gray’…gray neurons are those not covered in myelin, the white fatty insulation that separates one neuron from another….
[p34]..In fact, the main event of the poliovirus attack was not in the spinal cord at all. [more excerpts on The Polio Paradox page]

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