IPPSO NEWS MAGAZINE

It is ability that counts, not disability

From the Editors Desk

When I published the Mayo Clinic report that told us that PPS is all in the head, I did so tongue in cheek, fully expecting that it would provoke a heated response from readers - and it did exactly that! There has been a flood of letters from all of you, and I take pleasure in publishing many of them in this issue of the IPPSO News Magazine.
Why did I publish the Mayo Clinic report at all? Do I believe that their findings are correct? The answer is a resounding No!! Does IPPSO subscribe to the same views as those who compiled the Mayo report? The answer is once again, a resounding No! Do any of our members agree with the Mayo Clinic Report. Yet again, the answer is a definite No! PPS certainly does exist and it is a very real syndrome. Quite clearly, the findings of the Mayo Clinic are, in this instance at least, absolute rubbish. To tell us, of all people, that PPS is a figment of our imagination, is like telling us that the earth is flat, or that the moon really is made of green cheese. But in any good democracy, the right of free speech is paramount. Even at the Mayo Clinic, uninformed as they obviously are. Their report proves only that we shouldn't believe everything we read.

Letters to the Editor

This is a new section of our magazine in which you can have your say on anything that you wish to. I fervently hope that you will all take full advantage of this column. This is your magazine, and this is where you really can have your say and make any criticisms you wish, good or bad. I promise to publish whatever you write. Ed.

From Hazel (Scooter) Vest
It has been brought to my attention that the Mayo Clinic did a study and came to the conclusion that there is no Post Polio Syndrome. I beg to differ with them and if in fact this was a true conclusion they did not have the right candidates to do their study on.
I had Polio when I was 12 years old and was hospitalized in Ft Worth Texas for 3 months and spent many more months going to therapy in Ft Worth. I was fitted with a full leg brace, high topped shoes and all. I had a partially paralyzed right leg and weak back. I went on in life and was quite successful in the telecommunications industry for 20 years. In 1995 I fell at work and broke my left wrist. That fall was the start of what I now know as Post Polio Syndrome.
I couldn't even take a shower or bath without assistance. My whole body was sore. My joints so sore that I could hardly walk. I was basically unable to do anything around the house. My condition gets worse every day. My body cramps, I am unable to sleep and unable to walk without assistive devices. In 2003 my right knee, which was weak from Polio hyperextended completely and I was fitted with a make believe brace which does more harm than good. I cannot sit or stand for long periods of time and have graduated to doing my cooking and cleaning sitting on a stool.
This started when I was only 54 years old. I had noticed several other small things before this all happened. I would fall asleep at work for no reason. I could no longer walk as far as I was accustomed to, but I thought nothing of it until the fall and from that day until now have not been able to do any work at all. I find it hard to believe that it is old age setting in. I just wish that those Mayo Clinic people could walk in my shoes and be in constant pain every minute. They would very soon realize that Post Polio Syndrome does exist. Yes Mayo Clinic, there is indeed such a thing and let me tell you it is not a bowl of roses. I just trust in my Lord and take each day one at a time. There is absolutely no kind of pain pill that will relieve my pain, they only make me depressed. I find the only thing that helps me at all is Aleve and that really does very little.

From Joan Fitzgerald
Unless the people at the Mayo Clinic have had polio they won't understand what we go through. When I was 4 yrs. old I was playing in the backyard, had a little cold and according to my mother was doing ok. When she called me in for lunch she noticed that I was limping and my arm was not moving.
Over the course of several months she took me to many doctors, I think they call themselves specialists, they told her it was just a cold. The doctor in New York had no clue what it was. She eventually took me to the family doctor who told her it was polio. I went to the Curative Workshop in Wilmington, DE where we lived and can remember the physical therapy and using my left side to do everything.
As I got older I was sent to the General Hospital in Wilmington for more therapy. I did not wear a brace on my legs, even though I had to drag the left leg and if I wanted to use my left arm, I had to use the right arm to help it along. This went on for many years until I finally regained the use of both limbs. From the polio I blinked my eyes to the point of getting so tired I couldn't keep my eyes open and had a tic of my head. Every doctor I went to told me the same thing, it was all in my head and in school, kids can be cruel. I wore a brace on my back so that I would not be hunched over and I remember it hurting so bad that when I got to school I would take it off and then put it back on before I got home. Now I am noticing that I am hunched over just slightly.
I found a doctor, a Neurologist in Wilmington who swears that I didn't have polio, and the Clonopin that Doctor prescribed do work. The only thing I am noticing now as I get older is that I get very tired very quickly. My muscles ache constantly and sometimes it is an effort to hold my head up because the muscles in my neck ache so badly. I finally figured out that when I get tired I have to slow down or stop and rest, and it works.
When I was going to the Curative Workshop, I remember a nurse telling me never to use the word 'can't' because I can. Every time I think I can't do something I think of her, but of course as I am getting ready to turn 66, I know I can't sometimes. The post-polio site has been wonderful, I always thought it was me and maybe I was the one going crazy until I found this site and realized that so many people had the same problem. That's when I figured out it wasn't all in my head, and those black shoes I had to wear because one leg was shorter than the other did work. I remember them looking like men's work shoes, just plain ugly.
I wish there was a doctor in Wilmington, DE that understood polio and what we are going through now, I would seek him out in a hurry. I live in Maryland, right outside of Wilmington and I know there are doctors in Maryland, I just have no clue how to get to where I need to go. I still drive, but don't go too far since I don't know my way around.
Thank you for the Post-Polio site and for all the info I have gotten from it. I enjoy reading of other people with the same problem as me. At least I know that I'm not alone.

From Fred Batlle, Guatemala
I am 57 years of age, got polio at age 6 months. My life has been very meticulous - almost no alcohol, absolutely no smoking, taking drugs only on prescription, going to bed on time, working, studying and living a very normal life. I am very healthy except, of course, for Post Polio Sequelae.
Five years ago whilst working in the garden, I lost all strength in my less affected arm. Now, I often lose all my strength. It is like a complete 'shut down' of my body. I get very tired without any logical reason. If this is not PPS, then what is it??? It can't be old age because I am not that old at 57. My father died at age 89, his brothers are still alive at 92, 93 and 95 years of age, and my mother is 91 and still going strong.

From Jane Juday
The Mayo Clinic article upset me but I just considered it must have been a doctor who didn't have Polio. Here's my story:-
I was a college freshman Dec. 4, 1951, when I had a high fever. Going to the infirmary, they diagnosed me with flu. I was placed in a ward with 7 beds. I began throwing up often for 3 days. Then the head nurse came to me and said 'Stop that!' Then my mom called and picked me up and took me home. Our family doctor of great experience declared it was polio and sent me to isolation at Ball Mem. Hospital in Muncie, IN. I had problems swallowing and found the uvula in the back of my mouth had no feeling. Just recently I was told that there was iron lung in the hallway where I couldn't see it. A very long needle removed spinal fluid (a nurse fainted) and I was told I had polio.
I have not had the energy I had in High School and have tired quickly. I have 3 healthy sons and had problems keeping up with them. But I was able to teach school from 1967 to 1976 when I had to quit. I couldn't work 5 days in a row.
My husband & I went into a lumber business then. I worked there until May 1995 when my legs seemed to give up. We then retired. I was in a wheel chair for some years and still use a scooter when shopping or walking long distances, especially in the morning. I take sleeping meds every night to rest at least 8 hours. I take anti-depression drugs, wellbrutrin 150+75 mg. I have recently added two 100 mg Dilanton tabs a day for anxiety. I can now stay calm and I read a great deal.
I can still sing for 20 mins before I lose my voice. This has been a great hobby all my life and hope I don't have to give up singing completely. I am now 74 yrs old. I have slept on a magnetic mattress pad since 1996. I received a c-pap machine Sep. 2006 which has increased my energy and walking ability. I can't stand noisy restaurants etc. I don't cook or stand in the kitchen as I once did.
Tell me all this is in my head!!!

From Gladys Svensrud
I don't for one moment believe the Sorenson/Mayo report on PPS and aging. They make our motor neuron disease sound so benign and simple... it isn't in my case, and I doubt that it is simple for others either.
The negative results of sleeping one night without my bi-level would be enough to dispel the thinking that I am no different than my age-related non-polio peers. Not one of my non-polio friends needs a non-invasive ventilator with a back up rate to breathe when they sleep. Perhaps the involuntary action of breathing when I sleep is all in my head; oh that's right... it is probably mostly in my muscles (smile). A download of my VPAP III (S/T) tells me just how different I am. I dare say it would be impossible to convince me I am the same as my non-polio related brethren.

From Gary Lee
It is as though no one ever considers the serious respiratory problems many with old polio experience. Based on the Mayo Clinic report, it should come as no surprise it took me three years to convince my local HMO of the important relationship between neuromuscular problems and breathing. However, that being said, once I provided the proof that all patients with neuromuscular respiratory issues needed more assistance, my HMO (Kaiser/San Diego) stepped up to the plate and created a plan to care for us that far surpasses any program I have heard about to date. Kaiser/San Diego's Neuromuscular Respiratory Program is organized, comprehensive and thorough. It makes me proud to be a member of the healthcare system charged with my care.
My name is Gary Lee. I was with IPPSO for several years in the 90's and early 2000. I've been trying to get the dues for several years, but something always came up. I'm saving up so that I can send it by the beginning of summer. I've been keeping up with everything that has been going on with IPPSO.
I read the IPPSO Magazine that was e-mailed to me. It is excellent, but I really have to take exception to the results of the Mayo Clinic with Childhood Polio and Aging. I am 61 and all of the men I know around my age are able to walk, run, play various sports, etc., while I'm in a wheelchair and have to have medication just to make it through each day, plus having to give up all the sports I love. I had polio when I was 4 and the only visible effect is from my knee to my foot on my right leg. Am I alone in strongly disagreeing with this study? I know I was outraged. To me, it's that kind of work that sets back the help that those like myself so desperately need.

From Shari (Fulton) Fiksdal
The 'study' that they did at the Mayo clinic was discussed at our April Conference in Miami, and no one accepted it. We found out that the people they used were those they treated 'near them' that they could still locate. Thus probably leaving out many who were now sick, I don't think any one in the field of PPS really puts much stock in what they had to say on this even though we were all very disappointed since they are such a well known medical establishment.
I am not sure how many people wrote to them to complain but I would strongly suggest you might want to add your name to that list of people. Maybe if they hear from enough of us they will listen.

Canada's National Polio Survivors Network
Post-Polio Syndrome Just Aging? Think Again, Say Scientists and Advocates

A recent study of polio survivors by researchers at the Mayo Clinic has sparked a misinformation wave that has scientists and advocates shaking their heads in disbelief. The study, "Electrophysiological findings in a cohort of old polio survivors" by Sorenson, Daube and Windebank was recently published in the September issue of Journal of the Peripheral Nervous System. The study followed a small group of polio survivors for 15 years, measuring the thenar muscle at the base of the thumb and the digitorum brevis muscle on the sole of the foot. The study authors noted that the majority of polio survivors in the study did show a decrease in muscle strength over the 15-year period.
The researchers then compared the results of their study to another separate study of normally-aging individuals. The second study had different methodology and measurements for muscle strength testing but was used as a pseudo-control group to compare the results of the small polio survivor population in their own study. When comparing the two studies, the majority of polio survivors do not appear to have any difference in their decreasing muscle strength compared to their aging peers.
'Taken out of context, this can infer that post-polio syndrome (PPS) does not exist. It can be even interpreted, incorrectly, to mean that people with PPS are no worse off than their similarly aged peers,' says virologist and polio researcher Dr. Marcia Falconer. 'Taken within the context of the reported data, the statement does not mean any of this.'
Unfortunately, some media outlets took this interpretation of the results as an indication of confirmation that post-polio syndrome does not exist and is rather merely normal aging.
When contacted by Polio Canada for comment, researcher and author Dr. Eric Sorenson agreed that his study was "taken out of context."
This misinterpretation of the study does not reflect at all what the study and over 25 years of research into post-polio syndrome have shown. In fact, the data within the Sorenson study only helps to confirm what many previous epidemiological research studies have shown: that an approximate 25% of polio survivors will develop new muscle weakness, fatigue and pain a medical condition called post-polio syndrome.
"It is unfortunate that some media outlets chose to report on a study without fully understanding the study methods or results." says Kimberley Dowds, Associate Director, Polio Canada, a program of March of Dimes Canada. "Misinformation and misunderstanding of post-polio syndrome is our greatest enemy. The good news is that not all polio survivors will develop post-polio syndrome. For those that do, education, counseling and medical treatment are key to maintaining a good quality of life."
Proper diagnosis of post-polio syndrome is important, says Dowds. "Only a trained neurologist or physiatrist can accurately diagnose post-polio. All other possible causes for their new muscle weakness, fatigue and pain must first be ruled out before post-polio syndrome can be confirmed."

Hehehe Corner

When I was kidnapped, my parents snapped into action. They rented out my room. ......... Woody Allen

Periacetabular Osteotomy for Painful Non-Paralytic Dysplastic Hip Joints in Adults Affected by Poliomyelitis

Lin TP, Ko JY. Wu RW, Wong T, Chou WY
Department of Orthopedic Surgery, Chang Gung Memorial Hospital, Kaohsiung Medical Center, Chang Gung University College of Medicine. Kaohsiong, Taiwan
BACKGROUND: Few researchers have discussed hip joint dysplasia in adults affected by poliomyelitis. We retrospectively studied the outcomes of hip joint function in poliomyelitic adults who underwent periacetabular osteotomy for the contralateral painful non-paralytic dysplastic hip joints.
METHODS: Eight female patients with the mean age of 35.9 years underwent periacetabular osteotomy from January 1991 through July 2002. The procedure was performed on eight non-paralytic hip joints via a modified Ollier transtrochanteric approach. Harris hip joint scores and radiographs were used to evaluate the hip joint functions.
RESULTS: At a mean of 9.0 +/- 3.8 years postoperatively. the modified Harris hip joint had improved from 45.6 +/- 12.9 points preoperatively to 75.8 +/- 20.9 points. Radiographically, the degree of osteoarthrosis remained unchanged in seven hip joints and got worse in one. The anterior center-edge (CE) angle increased from 14.0 +/- 17.5 to 30.9 +/- 10.4 degrees. The lateral CE angle increased from 16.0 +/- 11.7 to 18.0 +/- to 18.0 +/- 23.3 degrees.
The acetabular index angle improved from 26.0 +/-6.9 to 11.3 +/- 4.4 degrees. The acetabular head index increased from 36.1 +/- 11.7 to 63.1 +/- 20.7%. With an outcome system combining modified Harris hip joint scores and radiographic severity of osteoarthrosis, six patients had satisfactory results.
Coxa valga usually occurred bilaterally with the neck-shaft angle of 159.0 +/-15.7 degrees for the operated non-paralytic hip joints versus 161.4 +/- 6.7 degrees for the non-operated paralytic hip joints.
Complications included osteonecrosis of the rotated acetabular fragment, acetabulofemoral impingement, a defect on the rotated ilium, and a non-union of the superior pubic ramus [one hip joint each].
CONCLUSIONS: Acetabular dysplasia can be severe in the non-paralytic leg because of coxa valga, leg length discrepancy, and pelvic tilt. Periacetabular osteotomy through a modified Ollier transtrochanteric approach provides extensive correction and relief of symptoms in most painful non-paralytic dysplastic hip joints in adults affected by poliomyelitis.

Harald Hasle

Meet Harald Hasle
Co Founder of IPPSO

Harald Hasle was born in 1942 in Oslo, Norway, and lived there for the first five years of his life. His family then moved to Vikersund where, together with his brother, he often visited the family's friends, Gudrun, Bjarne and their three daughters, two of whom were adults, the third being the same age as Harald.
It was a meeting place for children and there were often as many as ten or twelve there at any one time. Christmas was the highlight of the year for the children. They were picked up by Bjarne and driven in his one horse open sleigh, harness bells and all, and driven to the farm where at least 50 adults and children were gathered. They all danced around the Christmas tree and sang Christmas carols and were served with all the traditional Norwegian Christmas food you could think of, like cakes and cookies and so on. Santa Claus would pop in during the evening's festivities, with sacks filled with Christmas presents which he would hand out to everyone there. It was an idyllic time which Harald remembers very fondly.
Harald was eight years old when he was stricken by poliomyelitis, but there were no signs of paralysis. The only things that bothered him were a general weakness and frequent falls, or so they believed, but kypho-scoliosis developed much later. It is also called S-back because the spine forms a letter "S" when seen from behind and in profile. Harald's spinal curvature was at first diagnosed as Scheuermann's disease (a weakness of the muscles) because of his accelerated growth. His height had increased by ten and a half inches in three months (He is now 6ft 2in tall). None of the doctors he saw ever associated his scoliosis with polio until very much later.
Despite what he calls his "crooked" back, Harald lived a very normal life. He has two children, Helga and Oscar. He was able to work and earn a living in whatever field he chose and enjoyed all the fruits of life until one day, he developed a peculiar weakness. Suddenly, Harald found that he couldn't move around as he once used to. He was always utterly exhausted and it was more and more difficult to work at his job.
In 1985, Harald heard an interview on the radio with a neurologist who was talking about something which he called Post Polio Syndrome and Harald recognized that the symptoms that the neurologist was describing were the same symptoms that he, Harald, was experiencing and he soon realized that polio struck him yet again, this time as Post Polio Syndrome. (PPS). No longer could Harald move around as he once used to. He had no choice but to retire.
He now lives on a disability pension, and he does a little work from home, mainly designing web sites. (Harald has a degree in Computer Science). Understanding PPS and helping others who have the same problem as he does led Harald to the old P.R.Y.S. web site and when that organization came to an end, it was Harald who, together with Shari (Fulton) Fiksdal formed the IPPSO organization. Harald is a naturally shy and retiring person, but a very hard worker indeed. It is not surprising therefore, that Harald did all the work setting up the IPPSO web site, and that he is the sole reason for IPPSO having been formed. He is not a "people's" person and relied heavily on Shari, as co-founder, to attend to that side of IPPSO. Harald got our first non profit approval in Norway in 2001 we got it here in the U.S. in 2002.
Harald is not in the best of health today. He suffers from breathing problems and was in India when, two years ago, he suddenly stopped breathing for about five minutes. The doctors there managed to bring him back and he is currently in Norway, enjoying his two new grandchildren. We wish him everything of the best, particularly as far as his health is concerned. One thing is obvious to us all.......
We owe a great debt of gratitude to Harald. Without his effort and hard work, IPPSO would not exist today. Shari writes about Harald saying.....
...... "Harald was the reason IPPSO was founded. He asked me to be his co-founder as I was the people person and he did EVERYTHING on the website and got our first non profit approval in Norway in 2001 we got it here in the U.S. in 2002 ...... He has done much for so many. I know he was active in Norway in the battle against PPS too."

Thank you, Harald, from all of us!

Hehehe Corner

Accomplishing the impossible only means that the boss will add it to your regular duties

Hydrogen Beer

From our Special Correspondent
(Tokyo) The recent craze for hydrogen beer is at the heart of a three-way lawsuit between unemployed stockbroker Toshira Otoma, the Tike-Take karaoke bar, and the Asaka Beer Corporation. Mr. Otoma is suing the bar and the brewery for selling toxic substances, and is claiming damages for grievous bodily harm leading to the loss of his job. The bar is counter-suing for defamation and loss of customers.
The Asaka Beer corporation brews 'Suiso' brand beer, in which the carbon dioxide normally used to add fizz has been replaced by the more environmentally friendly hydrogen gas. Two side effects of the hydrogen gas have made the beer extremely popular at karaoke sing-along bars and discotheques.
First, because hydrogen molecules are lighter than air, sound waves are transmitted more rapidly, so individuals whose lungs are filled with the nontoxic gas can speak with an uncharacteristically high voice. Exploiting this quirk of physics, chic urbanites can now sing soprano parts on karaoke sing-along machines after consuming a big gulp of Suiso beer.
Second, the flammable nature of hydrogen has also become a selling point, though it should be noted that Asaka has not acknowledged that this was a deliberate marketing ploy.
The beer has inspired a new fashion of blowing flames from one's mouth using a cigarette as an ignition source. Many new karaoke videos feature singers shooting blue flames in slow motion, while flame contests take place in pubs everywhere. 'Mr. Otoma has no one to blame but himself. If he had not become drunk and disorderly, none of this would have happened. Our security guards undergo the most careful screening and training before they are allowed to deal with customers,' said Mr. Takashi Nomura, Manager of the Tike-Take bar.
'Mr. Otoma drank fifteen bottles of hydrogen beer in order to maximize the size of the flames he could belch during the contest. He catapulted balls of fire across the room that Godzilla would be proud of, but this was not enough to win him first prize since the judgment is made on the quality of the flames and the singing, and after fifteen bottles of lager he was badly out of tune.'
'He took exception to the result and hurled blue fireballs at the judge, singeing the front of a female judge's hair and entirely removing her eyebrows and lashes, and ruining the clothes of two nearby customers. None of these people have returned to my bar. When our security staff approached Mr. Otoma, he turned his attentions to them, making it almost impossible to approach him. Our head bouncer had no choice but to hurl himself at Mr. Otoma's knees, knocking his legs from under him.'
'The laws of physics are not to be disobeyed, and the force that propelled Mr. Otoma's legs backwards also pivoted around his center of gravity and moved his upper body forward with equal velocity. It was his own fault that he had his mouth open for the next belch, his own fault that he held a lighted cigarette in front of it, and his own fault that he swallowed that cigarette.'
'The Tike-Take bar takes no responsibility for the subsequent internal combustion, rupture of his stomach lining, nor the third degree burns to his oesophagus, larynx and sinuses as the exploding gases forced their way out of his body. Mr. Otoma's consequential muteness and loss of employment are his own fault.'
Mr. Otoma was unavailable for comment

Hehehe Corner

Is it correct to call a hippie's wife 'Mississippi'?

Fractures in an Aging Population of Poliomyelitis Survivors:

(A community Based Study in Olmstead County, Minnesota
Goerss JB, Atkinson EJ, Windebank AJ, O'Fallon WM, Melton LJ 3rd
Department of Medical Genetics, Mayo Clinic Rochester, Minnesota 55905
(Can we believe this one? It comes from the Mayo Clinic!!! Ed)
OBJECTIVE: To determine the incidence of fractures in a cohort of survivors of paralytic poliomyelitis ('polio').
DESIGN: We conducted a population-based retrospective cohort study of residents of Olmsted County, Minnesota, who had an initial diagnosis of polio between 1935 and 1959 and survived the acute illness.
MATERIALS AND METHODS: A comprehensive medical records-linkage system was used to retrieve all diagnoses of poliomyelitis in residents of the county for the specified 25-year period. For the 277 study subjects, the medical records were searched for the occurrence of fracture from the time of initial diagnosis of polio until death or the most recent clinical contact. All fractures were classified on the basis of type of associated injury and skeletal site of involvement. The influence of polio on the incidence of fractures was evaluated by estimating the cumulative incidence of new fractures after the diagnosis of polio and the standardized morbidity ratio. The relative influence of various factors on the risk of fracture was determined.
RESULTS: Of the 277 Olmsted County residents with polio, 87 experienced 161 fractures, and the estimated cumulative incidence of any fracture after 40 years was 48%. The cumulative incidence of any limb fracture was 41% and was less than the expected value of 44% (P = 0.001). Only the risk of distal femoral and proximal humeral fractures was significantly higher than that among Olmsted County residents in general. The increased risk seemed to be associated with weakness and disuse of the involved limbs rather than with generalized osteoporosis. Theoretically, a greater capacity for bone remodelling in response to changes in muscle use might have protected patients with polio in childhood, but such persons were as likely to sustain a fracture as those with adult-onset poliomyelitis.
CONCLUSION: These data indicate that survivors of paralytic poliomyelitis do not have an unusual risk of fracture except in affected limbs.

Current Vaccine Information

From Shari
The website below is full of current information on all types of vaccines. I thought you might find it interesting. (Plug in polio or post polio and notice what comes up.) Just click on the Link.

www.vaccineplace.com

Hehehe Corner

If you are an average American, in your whole life, you will spend an average of 6 months waiting at red lights.

Polio Survivors Start Local Support Group

More from Shari
By Ashley Gardner - Texarkana Gazette - Published 04/02/2008
Excerpt:
'Two local polio survivors are starting a support group for people experiencing post polio syndrome. The first meeting of the Texarkana Area Post Polio Survivors will be 2 p.m. Saturday [April 5th] in the Dogwood Room at CHRISTUS St. Michael Rehabilitation Hospital.'
http://tinyurl.com/2h2eq2

Milton H Erickson

With thanks to Lorraine Hartik, Ph.D
Milton H Erikson (1902-1980) is generally considered to be a most important hypnotherapist. He was a psychiatrist/hypnotherapist practising in Arizona, Phoenix, USA. He was born colour-blind and affected by polio at the age of 19 yrs., and in the process of curing his disabled body himself by modelling how the small babies in his family began to learn to move their hands and legs, his sensory perception on the level of non-verbal communication was made extremely acute, and helped him later in inventing non-conventional 'Erickson Hypnosis.'
His hypnotic techniques and life are well documented by a number of authors, among whom I. Haley of the Palo Alto Group was the first person who introduced the techniques of Erickson Hypnosis to the world.
Erickson grew up in Lowell, Wisconsin in a modest farming family, and intended to become a farmer like his father. He was a late developer, and was both dyslexic and colour blind. He overcame his dyslexia, and had many other inspirations via a series of spontaneous auto 'flashes of light' or 'creative moments'.
At age 17, he contracted polio, and was so severely paralyzed that the doctors believed he would die. On the critical night where he was at his worst, he had another formative 'auto experience'.
Erickson writes... As I lay in bed that night, I overheard the three doctors tell my parents in the other room that their boy would be dead in the morning. I felt intense anger that anyone should tell a mother her boy would be dead by morning. My mother then came in with as serene a face as can be. I asked her to arrange the dresser, push it up against the side of the bed at an angle. She did not understand why, she thought I was delirious. My speech was difficult. But at that angle by virtue of the mirror on the dresser I could see through the doorway, through the west window of the other room. I was damned if I would die without seeing one more sunset. If I had any skill in drawing, I could still sketch that sunset. I saw all the sunset, but I didn't see the fence and large boulder that were there. I blocked out everything except the sunset. After I saw the sunset, I lost consciousness for three days. When I finally awakened, I asked my father why they had taken out that fence, tree, and boulder. I did not realize I had blotted them out when I fixed my attention so intensely on the sunset. Then, as I recovered and became aware of my lack of abilities, I wondered how I was going to earn a living. I had already published a paper in a national agricultural journal. 'Why Young Folks Leave the Farm.' I no longer had the strength to be a farmer, but maybe I could make it as a doctor.
Recovering, still almost entirely lame in bed, and unable to speak, he became strongly aware of the significance of non-verbal communication - body language, tone of voice and the way that these non-verbal expressions often directly contradicted the verbal ones.
I had polio, and I was totally paralyzed, and the inflammation was so great that I had a sensory paralysis too. I could move my eyes and my hearing was undisturbed. I got very lonesome lying in bed, unable to move anything except my eyeballs. I was quarantined on the farm with seven sisters, one brother, two parents, and a practical nurse. And how could I entertain myself? I started watching people and my environment. I soon learned that my sisters could say 'no' when they meant 'yes.' And they could say 'yes' and mean 'no' at the same time. They could offer another sister an apple and hold it back. And I began studying nonverbal language and body language.
I had a baby sister who had begun to learn to creep. I would have to learn to stand up and walk. And you can imagine the intensity with which I watched as my baby sister grew from creeping to learning how to stand up.
He began to recall 'body memories' of the muscular activity of his own body. By concentrating on these memories, he slowly began to regain control of parts of his body to the point where he was eventually again able to talk and use his arms. Still unable to walk, he decided to train his body further, by embarking - alone - on a thousand mile canoe trip with only a few dollars. After this grueling trip, he was able to walk with a cane. This experience may have contributed to Erickson's technique of using 'ordeals' in a therapeutic context. Erickson was an avid medical student, and was so curious about and engaged with psychiatry that he got a psychology degree while he was still studying medicine.
Much later, in his fifties he developed post polio syndrome, characterized by pain and muscle weakness. The condition left him even more severely paralyzed, but having been through the experience once before, he now had a strategy for recovering some use of his muscles, which he employed again. After this second recovery, he was obliged to use a wheelchair, and suffered chronic pain, which he controlled with self-hypnosis. It usually takes me an hour after I awaken to get all the pain out. It used to be easier when I was younger. I have more muscle and joint difficulties now... Recently the only way I could get control over the pain was by sitting in bed, pulling a chair close, and pressing my larynx against the back of the chair. That was very uncomfortable: But it was discomfort I was deliberately creating.
In 1973, Jay Haley published Uncommon Therapy, which for the first time brought Erickson and his approaches to the attention of those outside the clinical hypnosis community. His fame and reputation spread rapidly, and so many people wished to meet him that he began holding teaching seminars, which continued until his death.
Milton HE. Erickson died in March 1980, aged 78, leaving four sons, four daughters, and a lasting legacy to the worlds of psychology, psychiatry, psychotherapy, pedagogic and communications.

Heehaw Corner

If the universe wanted us to be thin, food wouldn't taste so good.

Remember......

Once you choose hope, anything is possible. Christopher Reeve

Survivor of Von Trapp Family Talks

(from Shari)
By Barbara Morse-Silva. First Coast News, Jacksonville, FL. USA WAR/NABCO News Channel
Excerpt..... 'The 52nd Anniversary of the Polio Vaccine is just around the corner, and for many, that marks the elimination of a crippling disease. At 80, nearly 81, Henrietta Von Trapp has polio yet she still cherishes as much independence as her wheelchair will allow.'
Shari writes 'I guess most of you must have seen the movie 'The Sound of Music' and know the true story of the Von Trapp family.'

Effort to Defeat Polio Faces Unique Challenges

Unclear When Vaccination Can Be Halted By David Brown
Washington Post Staff Writer
Tuesday, December 25, 2007; A02
The troubled 19-year-old campaign to eradicate polio is celebrating recent progress and an unexpected infusion of cash, but experts are coming to realize that they will not be able to end the expensive and laborious efforts to control the virus anytime soon.
Ridding the world of polio will be a far messier business than the 1977 eradication of smallpox, which remains a unique achievement in medicine. That is because it is now clear that the virus that causes polio could re-emerge years, and possibly even decades, after the last case is found.
The reason involves peculiarities of poliovirus and the oral (Sabin) vaccine being used to eradicate the disease.
The vaccine contains a weakened poliovirus that stimulates immunity against the 'wild' virus, which can cause paralysis. On rare occasions, however, the vaccine virus can mutate to a more dangerous form, spread from person to person and cause a paralytic infection.
This phenomenon, only recognized in the past decade, has caused outbreaks in 10 countries since 2000. This year, 7 percent of all polio cases worldwide were caused by mutant, vaccine-derived virus.
The only way to prevent this from happening is to keep the world's infants and toddlers fully immunized -- in other words, to keep up the exhausting, expensive full-court press that has now gone on seven years longer than was anticipated.
To rid the planet of polio, people will eventually have to stop using the oral vaccine. Whether they should forgo immunization altogether or use the alternative vaccine -- the Salk 'polio shot' that does not contain live virus and cannot cause infection -- is now under debate.
Switching to the Salk vaccine, however, will be hard.
It's more expensive: roughly $2.70 per dose, compared with 15 cents for the oral vaccine. About 135 million infants are born each year, and each will need at least two shots. While the two companies that make most of the world's supply can ramp up production to that level, it will take them at least five years, and possibly a lot longer.
Consequently, even after eradication, many countries will have to continue using the oral vaccine -- and be prepared to play a global version of whack-a-mole, spotting and suppressing mini-epidemics caused by it.
This all adds up to an outcome nobody anticipated in 1988 when the World Health Organization, emboldened by the smallpox success, took on polio.
'My major concern has been that the eradication of wild virus may not be the whole problem in terms of eliminating the disease, or even protecting the world from it,' said Ellie Ehrenfeld, a virologist at the National Institutes of Health and an adviser to WHO.
Before the eradication campaign began, polio paralyzed more than 350,000 people a year in 125 countries. Stopping that suffering is the chief goal of eradication.
Health officials also hoped the end of polio would also mean the end of polio vaccination, with its trouble and expense. That was the case with smallpox. No country routinely vaccinates against that disease anymore, a move that has saved more than $17 billion in the United States alone.
But an unambiguous transition to a 'polio-free' world is unlikely. It will be hard to know when, if ever, it is safe to forgo vaccination.
Part of the reason is a fear that terrorists might intentionally reintroduce the virus -- a possibility countries did not worry about much when they decided to stop smallpox vaccination. But there is also the chance of accidental or unrecognized release.
Work is underway to identify laboratories holding poliovirus, reduce their number and increase their security. But unlike with smallpox, there may be places that have the pathogen and do not know it.
Poliovirus replicates in the intestine. Thousands of labs around the world have frozen samples of faeces that may contain the virus -- either the wild type or the vaccine virus -- that could theoretically escape.
Further complicating matters is the fact that most polio cases are 'silent.' In only 1 in 200 infections from the wild virus is there the characteristic muscle weakness that lets physicians make the diagnosis. Polio virus can travel far before anyone knows it.
'There is going to be a period -- and perhaps indefinitely -- where the world is going to want that umbrella of protection,' said Stephen I. Cochin, a physician at the UP.SO. Centres for Disease Control and Prevention who chairs a committee advising WHO on polio eradication.
'I don't think we will ever stop using inactivated polio vaccine' in the United States, said Walter Orenstein, associate director of the Emory Vaccine Centre in Atlanta and an adviser to WHO.
Polio caused by vaccine-derived virus is only one of the obstacles recently encountered by the Global Polio Eradication Initiative.
The campaign threatened to unravel in 2003 when several populous, largely Muslim states of northern Nigeria stopped immunizing because of rumors that the polio vaccine contained the AIDS virus or an ant drug. The disease roared back.
By the time vaccination resumed a year later, the virus was out of the barn.
Over the next three years, 20 countries were reinvested with virus traced via genetic fingerprinting to strains from northern Nigeria. (Seven other polio-free countries were reinvested at the same time after a resurgence of the disease in India.) These included not only many African countries but also such faraway places as Saudi Arabia and Indonesia. Worldwide, polio's annual toll, which had fallen to 784 in 2003, climbed to 2,000 last year.
Responding to the Nigerian outbreak took hundreds of millions of dollars and a huge amount of work.
The main tool in eradication is National Immunization Day, a coordinated effort in which workers go door to door over one or two days and put drops of vaccine in the mouths of every child under age 5. Some reinvested countries had to hold four or five of these days in a year, rather than just two, to become polio-free once more. (Outbreaks caused by vaccine-derived virus are handled the same way.)
The effort is paying off. The number of reinvested countries is down to seven, and the number of countries where the disease is still 'endemic,' meaning it has never been stopped, is now four, the lowest in history. (They are Nigeria, India, Afghanistan and Pakistan.) Through last Tuesday, only 857 cases of the disease had occurred this year.
But in the northern Indian states of Uttar Pradesh and Bihar, which have a combined population of 270 million, polio is holding on tenaciously.
Many people there live in crowded, unsanitary conditions ideal for transmitting the virus. In fact, there are so many intestinal viruses, and so much diarrhea, that the vaccine has a hard time elbowing its way in to get the attention of the immune system. Astonishingly, one-third of polio cases in northern India last year were in children who had gotten the vaccine at least 10 times and still had not developed immunity.
To address the problem, polio campaigners recently switched to a vaccine with only one type of polio virus in it. (Normally, there are three.) This cuts down on the competition and targets the specific type of wild virus in the area. The campaign is gaining traction.
'We are deep into the high season for transmission and the numbers are still dropping,' said R. Bruce Aylward, a Canadian physician who directs the eradication initiative at WHO. 'That is a mix you don't see very often, and you are seeing it this year.'
The initiative, supposed to be completed by 2000, has cost $5.3 billion so far. Rotary International, which has 32,000 civic clubs around the world, has contributed $675 million. Last month, the organization got a $100 million donation from the Bill and Melinda Gates Foundation, contingent on the clubs' matching that sum.
'I sense great enthusiasm' for a renewed push to eradicate polio, said Robert Scott, a physician who heads Rotary's effort to halt the disease.
At the annual meeting of the scientific advisory committee in late November at WHO headquarters in Geneva, Aylward also felt a renewed sense of optimism.
'I have been in this a long time, and this is the first time I have seen an oversight committee say, 'This is going to be finished,' ' he said. He started working on polio eradication in 1991.

Hehehe Corner

It's hard to make a comeback if you haven't been anywhere

Closing Doors Easily

If you spend a lot of time in a wheelchair you may have discovered that it is inconvenient to close a door that you have just gone through. You could install an automatic door closer which you can get at a hardware store or you can try the things I did.
After you have gone through a door while in a wheelchair you have to reach behind you to grab the doorknob to close the door. That's very inconvenient, especially if you are carrying something in your lap. (I usually drop whatever is in my lap onto the floor.) If I back up to where I can reach the door handle, my wheelchair is still in the doorway, so I can't close the door.
One of the things I tried was to tie a rope or cord onto the doorknob. The idea was that when I sped through the doorway, I would grab the rope and pull the door closed behind me. This works quite well, but it takes a bit of co-ordination because while I am holding the rope, I can't push and steer the wheelchair.
I tried tying a bungee cord to the door to see if that would work better than the rope. Not really. I think that a longer cord might have worked better, but both the rope and the bungee cord required a good bit of co-ordination. I had to move quickly through the door, grab the rope and hold on to it and hope that the wheelchair didn't run into anything because I couldn't steer it easily with one hand.
I eventually solved the problem by installing a handle on the wrong side of the door. That is, I put a handle on the side of the door that is closest to the door hinges. I installed the handle higher than the doorknob because when I reach back, my hand is higher than the doorknob. That way, I can go through the doorway completely and then reach behind me and pull the door shut behind me. It's a bit of an effort to pull the door closed, but it works, and it is better than anything else I have tried!!

Remember........

Kindness is a language that the deaf can hear and the blind can see.