Editors: Mike and Yvonne Isaacson| Vol 2 No 10 October 2008 |
Editors: Mike and Yvonne Isaacson |
Halloween 2008 Issue
It is ability that counts, not disability
From the Editor's Desk
This issue sees the conclusion of the History of Polio series, which I hope you have found interesting. Perhaps you have heard of Mary-Anne Leithof who wrote a
paper for the Winston Churchill Memorial Trust of Australia entitled "To Identify Techniques to Better Manage the Late Effects of Polio". She was elected a
Churchill Fellow in 2007 and embarked on a study tour to the USA and Canada and visited several well known PPS doctors and hospitals in a quest to better
understand the range of resources and equipment available to those of us who are battling with PPS. Mary-Anne has given IPPSO her permission to publish her paper,
which I believe you will find to be very interesting. What she has written is far too long for a single issue, so I shall serialise her paper over several issues,
in the same way as the History of Polio.
We celebrate Halloween on October 31st. Witches, ghosts, pumpkins, vampires, bats, owls, crows, black cats, spiders, skeletons, werewolves and demons will be
everywhere that night and I shall be very surprised if you don't hear a "trick or treat" knock on your door. For those of you who might remember him, I hope that
Charlie Brown (of "Peanuts" fame) will finally see the great pumpkin in the sky this year!
Hehehe Corner
Q. Do zombies eat popcorn with their fingers?
A. No, they eat their fingers separately.
The History of Polio (Continued)
Polio patients were most vulnerable in the acute stage, when the virus was actively destroying the motor neurons that controlled the muscles connected to swallowing, breathing, and limb movement. Although there was, and still is, no cure for polio, endangered lives could be saved. Doctors and nurses used technology, experience, and vigilance to keep patients alive until the infection ran its course, and recovery began.
Did you know that.......
The poliovirus can destroy up to 60 percent of the motor neurons (which control muscle movement) before any symptoms of weakness or paralysis appears.
Before Sister Kenny brought her controversial massage, exercise, and hot-pack treatment to the United States in 1940, the accepted treatment for polio was to immobilize patients with rigid splints and casts.
"I left Providence Hospital in the spring of 1953, fully a year after the onset of my illness. It had become my home.... The Sisters, the nurses, the doctors,
and the cleaning staff had become my friends, and I was loathe to let them go…. It was a closed safe little world."
—Hugh G. Gallagher, 1998
Breathing
As with other epidemic diseases, such as cholera and tuberculosis, polio brought fundamental changes to medical practice.
"Tracheotomy is a simple procedure; a cut is made through the trachea below the vocal cords and a silver breathing tube three inches long is inserted into the
trachea. It extends directly to the lungs. By attaching a line from an oxygen tank directly to the trachea tube, the lungs are supplied with fresh oxygen without
passing through the rather long passages of the nostrils and trachea clogged with fluids."
—Hugh G. Gallagher, 1998
"The chest respirator ... is a plastic affair that is strapped tightly over the chest and is operated by a motor; its action creates a vacuum which causes
the chest to expand so that more air is drawn into the lungs."
—Jim Marugg, 1954
Elizabeth Kenny
"[Sister Kenny] looked me right in the eye and said, 'I'm here to try to help you. But, before I can help you, I’ve got to hurt you.'"
—Edmund Sass, 1996
Elizabeth Kenny, or Sister Kenny, as nurses were called in Australia, came to the United States in 1940. Her methods of hot-pack applications, stretching, and muscle massage were unconventional and controversial, but eventually became part of standard care for polio.
"I had no idea how painful the treatment could be. I'd fight to control myself, but inevitably I'd end up screaming.... She would actually
pull up the pectoral muscles, getting her thumb underneath and tormenting and pulling, stretching them to their limit, and then beyond. I knew it was for my own
good, but I dreaded each visit.... And oddly enough, as much as it hurt during the treatment, afterward I seemed better."
—Larry Alexander, 1954
Rehabilitation
"When I first contracted polio, except for my arms, hands, and neck muscles, I seemed to have paralysis all over my body...... My taste buds were
affected; my eyes refused to focus correctly; my mind wandered, and my breathing muscles were also stricken. At the end of six weeks, I lifted my head off the pillow
and was able to sneeze slightly. Three weeks later I managed to turn myself onto my side. By this time I was able to carry on a conversation without running out of
breath. In December, my feet returned for the most part to a normal condition."
Mrs. V. A. Pahl in the 1940's
For the majority of patients, the paralysis, breathing difficulties, and other symptoms of the acute phase of polio were a temporary condition.
Birthday party for the girl on the left (in bed) at the Hope Haven Hospital, Florida
"I had longed to come home but now that I was there, it wasn't much fun. Home wasn't the same if I couldn't sleep in my own bedroom or use the bathroom by
myself.... I felt like a stranger in those familiar rooms."
—Peg Kehret, 1996
Rehabilitation!!
"Our common experiences of pain and paralysis, separation from our loved ones, and an unending struggle to regain the full use of our bodies made us members of an
elite sorority that outsiders could never join. The success of one member became the success of all."
—Peg Kehret, 1996
"Mr. Vice-President, Mr. Speaker, and members of Congress, I hope that you will pardon me for the unusual posture of sitting down during the
presentation of what I want to say, but I know that you will realize it makes it a lot easier for me in not having to carry about ten pounds of steel on the bottom
of my legs."
—President Franklin Roosevelt, March 2, 1945, the opening words of his last speech to Congress
"Some equipment is actually used for muscle substitution. The orthopedic corset is a back-and-stomach substitute. It keeps the huge and heavy upper torso and head
from grinding down with all that weight on the relatively frail backbone.
Long and short leg braces are metal bones strapped with leather to substitute for quadriceps, hamstrings, tibia, and gastrocnemius. Missing muscles are remade of
aluminum and leather."
—Lorenzo Wilson Milam, 1984
"My braces were built. Steel down both legs from hip to heel outside, from groin to heel inside, running down into the shoes, bound round the thigh and calf with
stiff leather cases. Locks at the knees but nothing resembling a joint. It was stand stiff-legged or don’t stand. They weighed, shoes and all, ten pounds.... Then
the crutches. If I were to move it would have to be by the power of my shoulders and my triceps ... and the hands grasping the holds of the crutches."
—Jim Marugg, 1954
Right. Steel braces with hinges. For a toddler..... or maybe an instrument of torture? But it did help one to walk.
Assistive Devices
Everyday life proved to be a mixture of frustration, creativity, anger, patience, and problem solving after polio. People still needed to change diapers, prepare and eat meals, drive cars, buy groceries, finish homework, and produce an income. Almost anything could be adapted to assist in a task.
"At some rehabilitation facilities they emphasize ridding you of the fear of falling by making you fall repeatedly. The therapists go around kicking crutches out
from under people unexpectedly, to see if they've learned well their falling lessons. You're supposed to fall forward, throwing your crutches clear so that you won't
land on them and break something."
—Edward LeComte, 1957
At Last!! A Vaccine to Prevent Polio
Scientists could make vaccines even before they completely understood how they functioned. Eventually researchers learned that vaccines work by fooling the body's
immune system into producing antibodies even though there is no disease. Jonas Salk and Albert Sabin used this knowledge to create two different kinds of polio
vaccines.
Salk and Sabin with Basil O'Connor (who ran Warm Springs for Roosevelt)
Polio Pioneers
Twenty Million Volunteers.
"I don't think that my disability really changed anything as far as my relationship with my wife and children.... When our daughter Louise was in school (she
must've been really little), the teacher said to her, 'Your dad is Bob Gurney. He's the one who is handicapped.' Well, Louise told her, "No he"s not. He’s my
daddy!'"
—Robert Gurney, 1996
And Many Years Later........
Post Polio Syndrome!!!
Polio's adverse influence continues to be felt by many of the people who contracted polio decades ago.
Editor's Note This concludes the series. In next month's magazine, I begin a study of the Late Effects of Polio, also known as PPS.
Hehehe Corner
Q. What do you give a mummy with a sore throat?
A. Coffin drops
Everything You Ever Wanted To Know About Pumpkins But Were Afraid To Ask...
Hehehe Corner
It's true!!!! Ghosts put a topping of whipped scream on their sundaes.
Cardiac Risk Factors in Polio Survivors
A study was made of eighty eight consecutive symptomatic post polio patients, fifty women between the ages of 36 yrs and 81 yrs and 38 men aged between 44 yrs and
83 yrs to assess the prevalence of dyslipidemia (Type 2 diabetic patients have a characteristic lipoprotein profile commonly known as diabetic dyslipidemia) and
other risk factors for coronary heart disease in a sample of polio survivors with and without PPS.
Of the total who participated, 61.3% had dyslipidemia. The average ;cholesterol ratio was 4.01 (Women 3.68 Men 4.55). Forty-four patients had elevated blood
pressure. Seven patients had a history of diabetes or had elevated fasting blood glucose. Eighteen patients were smokers or had a history of smoking. Nine continued
to smoke and nine had quit smoking. Twenty five were overweight and forty-one had more than one risk factor for coronary heart disease ranging from atrial
fibrillation to angina. Nineteen patients had a previous diagnosis of dyslipidemia and twelve were on a lipid lowering medication. Nine had a history of heart
disease.
The study concluded that polio patients have a high prevalence of dyslipidemia. The study sample supports the National Cholesterol Education Program's Adult
Treatment panel's statements that hypercholesterolemia is under-diagnosed and under-treated. The post polio population carries a high prevalence of two or more
coronary heart disease risk factors. Evaluation and rehabilitation of polio patients should include screening for dyslipidemia and education about elimination of
controllable risk factors.
Make a Pumpkin Pie From Scratch
Things You’ll Need:
Step1
Cut your pie pumpkin in half and remove the stem. Scoop out the seeds and extra string. Place both halves on a foil lined baking sheet and cover with foil. Bake your
pumpkin at 350° for about 1.5 hours or until tender. Scoop out the flesh, which should be quite soft and puree the pumpkin using a hand or regular
blender
Step2
After your pumpkin has been prepared, combine together the sugar, cinnamon, ground cloves, ginger and salt. In a separate bowl beat eggs and stir in your dry
ingredients as well as your pumpkin. Mix well and slowly add in the evaporated milk while you stir. Make sure the filling is blended and smooth. Preheat your oven to
375°
Step3
For your pie shell cut your butter into the flour mixture. Use an electric mixer to combine the ingredients. Pour in the ice water a little at a time (on low speed)
until your mixture begins to clump and hold together. Remove the formed dough from the mixer and sprinkle a bit of flour before wrapping in plastic wrap and
refrigerating for an hour. Remove the dough after it has set in the refrigerator and roll out the dough using a pie crust bag or placing it in between wax paper.
Place the dough in your pie pan and shape the edges however you like. You can also use scissors to cut off the top edge. Pour your pumpkin mixture into your pie
shell.
Step4
With your oven already pre-heated, bake pie in the middle of the oven for 50 to 65 minutes. Cool and serve with whipped cream with a dash of cinnamon on top. You
have just made pumpkin pie from scratch!
Step 5
Eat and enjoy!
Hehehe Corner
Q. What is the tallest building in Transylvania?
A. The Vampire State Building.
GOOD NEWS FOR PPS'ers
Permission has been granted by Johan Häggblad, Managing Director of Pharmalink Ab for IPPSO to publish the following article. Pharmalink AB is a privately held Swedish specialty pharma company that develops proprietary pharmaceutical products in fields of unmet medical need. Pharmalink has adopted a reformulation/repurposing strategy and has a vast international network of physicians, biotech companies, CMO:s,CRO:s and specialist consultants. Pharmalink has a track record of introducing more than 15 pharmaceutical products to market. Pharmalink currently carries three clinical phase development projects, Nefecon®, Xepol® and Busulipo_, mature for out-licensing to a commercial partner and also seeks to refill its development pipeline by inlicensing. Xepol® is registered trademark of Pharmalink in Europe, US and certain other countries........... Well done Shari!!!! .................. Ed
Pharmalink reports positive phase III results for Xepol®, a treatment for postpolio syndrome.
STOCKHOLM, SWEDEN, August 26, 2008 - Pharmalink AB today announces positive results from a follow-on Phase III study of Xepol®, its candidate for the treatment of post-polio syndrome (PPS). The data have shown the candidate to be effective and well tolerated with no serious adverse events attributed to the product being reported in the treated patients.
The Phase III study, involving 142 patients, is a placebo controlled, double blind trial designed to evaluate the efficacy and safety of Xepol® in PPS, a neurological pain and weakness syndrome in patients that have survived poliovirus infection. The original placebo controlled, double blind Phase III trial was six months (Gonzalez et al (2006) Lancet Neurology 5:493-500) and this follow-up period was another six months.
The follow-on results strengthen the position of this novel treatment modality for PPS by demonstrating a reduction of inflammatory cytokines in the cerebrospinal fluid and a significant reduction of symptoms of PPS while also showing that Xepol® is safe and well tolerated with few or no side-effects. Endpoints studied were pain, walking ability and SF-36 scores (a common self assessment scoring system that measures physical and psychological variables). All showed significant and clinically meaningful results. Full results are to be published in a peer review journal.
Xepol®, the first medical PPS treatment, is an injectable biologic product, administered once per 9-12 months, which down-regulates the inflammatory process in the nervous system of PPS patients. The concept and medical hypothesis was first developed by Dr Henrik Gonzalez and Professor Kristian Borg, scientists at the Karolinska Institute (Sweden). Pharmalink licensed the invention and is now working to bring the candidate towards registration.
"We are very encouraged by the outcome of the follow-up analysis as it is clear from the results that Xepol brings relief from pain and muscle weakness to PPS patients," said Johan Häggblad, Managing Director of Pharmalink. "We are very excited about this data as currently there is no medical treatment for PPS and patients in the treated group have experienced a reduction in disease symptoms after just 12 months."
"It is very rewarding to see that Xepol is demonstrating efficacy and the potential to help PPS patients," said inventor and principal investigator Professor Kristian Borg. "We are looking forward to expanding the Xepol treatment procedure following product registration."
Pharmalink is actively seeking a partner to bring Xepol® to the market. More than 1000 PPS patients have been treated with the drug and many return on an annual basis for new treatment courses. Xepol® has already achieved Orphan Drug Designation in the US and is patented in the major markets.
The following was written by one of our members. Thanks Donna for expressing what many of us feel.
From Donna Kidner
Dear "Pain".....
First off, this should be sent directly to your "complaint" department, because I have some major "bones to pick" with regard to the way I have been treated and despite numerous attempts to contact your customer service department, little has been resolved.
On the one hand, some would say you are to be commended because you have been quite consistent over the years we've done business together, but let me tell you, I would add that you've exceeded any previous notions I may have held about the "product" in queston.
Are you aware of the power you have to completely turn another's life around, inside and out, sideways, backwards? Do you meet with your collegues, depression, sadness, anxiety, and devise more ways to torment your "victims"? Oh, sorry you must think of us as "customers".
Did it ever occur to you that most folks, were it in their power would gladly in a heartbeat put you completely out of business for all eternity?
I would lead a national campaign to do so, if you would consider allowing me a break in the action long enough to pursue such an worthwhile endeavor.
But as it is now, most if not all my energy revolves around "survival" and that is a full time job thanks to the likes of 'you',
I do not expect any response as I realize you most likely gained as much pleasure from this litany as you do when you dispense your daily doses. Many others I know share my displeasure and disdain over your existence in our world.
May someone far stronger than I, find the way to destroy you one day so that we all can live, love, and again contribute and have renewed purpose and a greater quality of life.
signed,
unthankfully yours,
P.S. no need to sign my name, you are fully aware of who I am for we have "spoken" often, have we not?