IPPSO NEWS MAGAZINE

It is ability that counts, not disability

From the Editor's Desk

Mike Isaacson
Ever since it was first mentioned, I have been fascinated by human stem cell research, specifically as to how that research might affect those of us with old Polio and PPS. I don't expect that it will offer a swift "cure" for PPS or for new Polio itself. Stem cell research is a relatively new area of medical research and there is still a lot of work to be done before we understand the possibilities and put them to use. In fact, it might be a long time before stem cells will eventually be of benefit to us PPS'ers, and the research might not be of any value to us in our own lifetimes; but polio has not yet been completely eradicated like smallpox has, and there will no doubt be future small polio epidemics; so if stem cell use in alleviating polio and/or PPS is eventually successful, it will probably be of benefit to someone other than ourselves. Be that as it may, you will find a fairly extensive report on stem cell types and stem cell therapy in this issue of the magazine, which tells us something about stem cells and what is happening in that particular sphere of medicine. The article begins with some details on how stem cells are formed and harvested and it discusses the ethics and law in harvesting stem cells before moving on to the hostilities of stem cell therapy for PPS. You don't need to be a medical researcher or a rocket scientist to understand it. It isn't easy reading, but it is absorbing and intriguing!
I have also decided to tell you a little about myself and where I live, which is far far away, on the opposite side of the world and in a different hemisphere than the U.S.A. You live in the Northern hemisphere and I live in the Southern. The only reason that I am telling my story in this issue is because I am still busy putting together the stories of much more important people in IPPSO than myself, whose stories will appear in future issues.

Letters to the Editor

There aren't any this month. Why not???
Don't forget that you are all welcome to moan and groan if you feel like it, also to tell us your own polio and PPS stories as well as any other subject that occurs to you, like when a heavy bag of oranges fell on your head whilst you were trying to reach a tin of something on the top shelf at the local Wal Mart. Anything!!! I promise that whatever you write will be published, so - go for it!! Be in time for the next issue. Email your letter to me at magazineeditor@ippso-world.org

Hehehe Corner

God, grant me the Senility to forget the people I never liked anyway, the good fortune to run into the ones that I do like, and the eyesight to tell the difference.

PPS - Is Any Research in Progress?

Scientists are working on a variety of investigations that may one day help those with PPS. Some researchers are studying the behaviour of motor neurons many years after an attack of Polio, others are looking into the mechanisms of fatigue and are attempting to discover what role, if any, is played by the brain, spinal cord, peripheral nerves, and the site where a nerve cell meets the muscle (the neuromuscular junction). Intense studies are taking place to establish whether or not there is an immunological link in PPS. Researchers are trying to find out if inflammation around motor neurons or muscles could be due to an immunological response.
Researchers have discovered that fragments of the polio virus (or mutated versions of it) are present in the spinal fluid of some polio survivors, but the significance of this is still to be established and more research is presently in progress. Whilst it is apparent that a lot of research is in progress, there are still far more questions than there are answers. We wait!

Meet the Editors

This photograph was taken a few months ago. Here I am, sitting in front of my beloved books. According to my mother's youngest sister (there is only 11 years between us) she thought it would be amusing to teach me how to read, so she did so when I was very young. She turned out to be a rather good teacher too! Apparently, at the age of 3 years I was reading the local newspaper. I wasn't understanding much of the meaning of the words that I could read, but I knew what the words were and how to pronounce them. This developed into a love of reading and I now spend many hours engrossed in a good book.
I was born in 1931 of Jewish parents in a town called Windhoek in what was then South West Africa, now known as Namibia. When I was three months old, we moved to Rhodesia, now known as Zimbabwe. If you want to know where these countries are, you will have to look them up in a map of the world! At the age of 9 yrs. I contracted polio. I lost the use of both legs and my tummy muscles are so weak that I look to be rather overweight. Actually, I am overweight, but I don't easily admit to it. I usually tell people that I am not fat.... I am pregnant! When they ask me when the baby is due I tell them that I don't know because I am only carrying it for a friend.

I have been married to Yvonne for almost 48 years. That's her on the left, in happy mood. Yvonne was 6 years old when she got polio in 1944 - both legs as well as her back were affected. She soon developed a bad scoliosis (72 degrees) for which she has had several major surgeries. Finally, Harrington rods were fitted and she had thirteen vertebrae fused as well. She developed PPS in about 1976 and of course, we didn't know what PPS was in those days and neither did any of the Doctors that we saw. It wasn't until about 1985 that we first heard about PPS and how to live with it.
We have two children and four grandchildren. I worked as an Accountant for many years and Yvonne was my Balance Sheet typist until we finally retired and settled in Cape Town, which is on a peninsula at the bottom of Africa, slightly to the West. (You'll have to get that map out again!) Cape Town really is a very beautiful part of the world. Sir Walter Raleigh once referred to it as "The most beautiful Cape in the whole circumference of the world." and it is too! For years it was known as "The Tavern of the Seas." A guy by the name of Jan van Riebeeck sailed in a small ship from Holland and landed here in 1452 to start a garden to grow produce for the fleet of the Dutch East India Company, sailing on their way to the Dutch East Indies. That garden still exists today!! It was van Riebeeck who introduced the grape vine to the "Cape of Good Hope" as it was then known, and today, we have a thriving wine making industry.

Cape Town (known as "The Mother City") lies in the shadow of Table Mountain which is only about half a mile from where the ships dock, so it really dominates the city. Table Mountain is a flat topped mountain about 3500 ft high, with the very modern city nestling at its foot. Sometimes a cloud settles over the top of the mountain, we call it the table cloth, and it adds to the beauty of an already beautiful sight. It is a popular holiday resort in season (December/January) when an influx of vacationers arrive from other parts of South Africa and from all over the world too. We have a population of about two and a half million people, some very interesting buildings, parks and botanical gardens. Nestled on the slopes of Table Mountain is the Cape Floral Kingdom which occurs only on this mountain and which boasts an abundance of flora not seen anywhere else in South Africa or in the world. Not very far away are the wild animals in their natural habitat, the "Big Five" (Lions, Elephant, Buffalo etc.) for which South Africa is famous. Don't worry though, they prefer the bush and never come into town!! They seem to do their shopping elsewhere! If ever you decide to visit us, just contact me and I'll meet you at the airport and have a hot cup of coffee and a donut waiting for you in my apartment. Do you take cream and sugar?

Hehehe Corner

If we aren't supposed to eat animals, why are they made of meat?

Polio Survivors Ask...

Nancy Baldwin Carter, Omaha, Nebraska, n.carter@cox.net

Q: Is our condition—post-polio syndrome—included in new medical texts or taught to medical students?
A: Apparently, the answer is "yes." PHI has been asked for photos of polio survivors with PPS for such reasons.

At first this idea sounded to me a bit like providing photos for a criminal justice class to show them what a criminal looks like. Just how does someone with PPS look, anyway?
An individual with PPS is not simply someone with recurvatum or an atrophied hand. It's a million other things, as well. What does underventilation look like? How do doctors view a likeness of someone with severely weakened throat muscles and understand that she cannot swallow solid food?
Furthermore, is there any way those same doctors could know that the deformities they see were caused by PPS and not by the original bout with polio?
Could our photos make a difference?
The task seemed impossible. We would have to develop our own huge "rogue's gallery" if we hoped to present an even halfway useful visual means of familiarizing doctors with the various "looks" of PPS.
And yet, what a contribution this could be! How about at conferences, where medical professionals could use our photos in teaching other medical professionals about PPS and a variety of devices that provide solutions for polio survivors?
Or perhaps use the PHI website to display a certain number of relevant "before and afters" so that medical professionals could view them easily in their own offices? Or to encourage polio survivors in other countries, for instance, who aren't familiar with what's available in the way of braces and various other assistive devices they have never seen?
I began to warm to the idea. I talked with Joan L. Headley, PHI's Executive Director, to discuss the issue. She loved it and suggested we devise a way to give it a try. This could be exciting!
So here's the deal: PHI asks those of you with PPS who wish to participate in this venture to provide us with pictures. Not just any photos, mind you, but specifically a series of Before and After shots that will make your case clear through photos. Something like this:

1. If polio left you with a drop foot, for example, see if you can find an old photo of how that foot looked before you had polio and how it looked after the disability became observable.
2. If your problem was alleviated with a brace, see if you have a photo that shows the brace and how that solved the problem.
3. If, then, you encountered more problems in that same area when PPS hit you, let photos show how PPS changed that leg and then how that was corrected.

You may be one who saw no noticeable difference to, say, your arms when you had polio, but PPS changed that — then we'd need pictures of how your arms looked before PPS and how they look now. If the condition has been corrected, then a photo of that would be needed, as well. Each photo submitted must be clearly identified so we know what it represents.
Please submit these photos (with a minimum resolution of 300 pixels per inch) to PHI's email address – info@post-polio.org – with "Before and After" in the memo line by August 1, 2008. You should know that photos cannot be returned to you, so it may be best to scan them. (Scan them at 600 dpi.) If you can't scan them and no longer want the photos, please mail them to PHI, 4207 Lindell Blvd, #110, St. Louis, MO 63108. Also, there is no guarantee anyone's photos will be used.
Want to pull out your old albums and new digitals and join in this exciting undertaking?
Let's go for it!
Nancy Baldwin Carter, B. A, M. Ed. Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.

Pain and Post Polio Syndrome

Important Note Whatever pain medications are mentioned in this article that you think might help you - it is imperative that you discuss them with your doctor before you try any of them.
Ed.
Assuming the you have been thoroughly checked for any other conditions that could imitate PPS symptoms and been treated, and that any other conditions that could be causing pain have been treated, here's a short list of some tips that seem to work for some PPSers - either alone or in combination:

• Moist heat applied to the painful area.
• Light massage to the painful area.
• Ice packs applied to the painful area.
• Chiropractic or osteopathic "adjustment" of neck / back / joints - but not for scoliotics.
• Acupuncture; and electro-acupuncture to the ear lobe.
• Herbal dietary supplements such as ginger, pycnogenol, cayenne pepper.
• Treatment of sleeping difficulties, i.e., insufficient amount of Stage IV (delta wave) sleep.
• Treatment of breathing difficulties, i.e., insufficient amount of oxygen and or too much carbon dioxide, especially during sleep.
• Use of assistive and adaptive aids, as necessary, to reduce stress and strain to muscles and joints; assuring that all body parts that require it, e.g., neck, head, back, shoulders, are properly supported at all times.
• For inflammation of muscles / joints -- use of arthritis-type drugs: NSAIDs (Non-Steroidal Anti-Inflammatory Drugs). Over-the-counter types like Aspirin, Ketoprofen or prescription types like Relafen, Voltaren, Naprosyn.
• For "nerve" pain -- use of anti-depressant prescription drugs --
• Ellavil (amitriptyline) -- an anti-depressant of the tricyclic type -- is the first choice in drug therapy by some PPS specialist docs for those with PPS pain AND trouble sleeping, at dosages less than would be used for clinical depression. But a lot of us don't tolerate it well.
• And for those (and also those who DON'T have sleeping problems), one of the STUB class of anti-depressants (Serotonin ReUptake Blockers) such as Zoloft or Paxil - also in smaller doses than would be used for clinical depression - may be of help.
• Occasional and/or careful use of muscle relaxants such as Quinine or Methocarbamol.
• Hormone Replacement Therapy, especially for post-menopausal, post-hysterectomy women and others with lower than normal levels of estrogen, testosterone, thyroid. DHEA, Melatonin.

Hehehe Corner

There are three kinds of people. Those who can count, those who can't...............

Puppies for Sale

A little boy was walking through a shopping mall one day and he saw a sign on a retail store (not a pet store) that read "Puppies for Sale". Now it seems that the store hadn't been doing very well at all and faced with a complete lack of customers and huge debts, the store owner had decided that there was nothing worth-while left in her life and had been standing at the back of the store, ready to slash her wrists and commit suicide right there and then. When the little boy came inside and asked if he could see the puppies, the owner was so startled that she dropped the razor blade before she had made the first cut and stared at the little boy in surprise. After a moment, she recovered herself and when the little boy asked how many puppies there were and how much the price was, she told him that there were six puppies and the price was between $25 and $50 depending on the dog, and the little boy said "Oh good! Can I see them please?"
Well, the store owner whistled and called "Lady!!" and out came this dog with five little balls of fur following behind her and one lagging far behind the others. The little boy noticed that this puppy was limping badly and he asked "What's wrong with that puppy?" and the owner said, "Well, that little puppy was born with a deformed hip socket and he's never going to be able to walk properly." and the little boy said, "Well that's the one I want. How much is he?"
The owner said "Oh, you don't really want that dog!"
"Oh yes I do!!" said the little boy. "How much?"
The owner looked at the little boy and said to him, "Well, if you really do want him, I'll give him to you free."
"Oh no," said the little boy "that dog is worth every bit as much as the others, and I will pay full price!". and he reached into his pocket and pulled out a Dollar and eighty two cents and he said "I'll give you $1.82 down and I'll bring you 50c a week until he's paid for."
The owner said to him, "Son, you're not listening! That puppy will never be able to run and jump with you like the other puppies."
The little boy reached down and pulled up his left pant leg all the way up to his knee to reveal a very badly twisted leg with a metal brace on it, and he looked the owner in the eye and said to her, "Well you see Ma'am, I don't run so well myself, and that little puppy is going to need someone who understands."
Her eyes brimming with tears, the owner took the $1.82 from the little boy and gently put the puppy into his arms. Never had she seen anyone look happier than that little boy at that moment.
Later, when the little boy had left, the owner was lost in thought. Now she realised that just because that puppy was disabled, it didn't mean that he wasn't valuable. "I am like that puppy," she thought to herself "just because I am broken, it doesn't mean that I am not a valuable person."
And from that day forward, she decided not to kill herself, but to go to someone and get help.
I am very pleased to be able to tell you that she got the help that she so badly needed, and she is still alive today, and, she is a very happy person.
And the little boy returned to the shop every week without fail, and paid the 50c instalment for his puppy.

Stem Cell Therapy for Post Polio Syndrome?

If you lose blood new blood cells of all types are formed from stem cells in the bone marrow, and after a time the composition of blood cells in the body will be entirely normal. This regeneration of adult cell types from simpler adult stem cells in bone marrow happens with blood and with other cells types too, but can it be for all cells?
If you break a bone and the bone is set and immobilized, after a month there will be new bone cells which bridge the gap. Where did these new specialized cells come from? The repair is expected, and even taken for granted, but exactly how does this happen?
There are cells in many areas of the body, which are primitive because they have not developed into specialized cells like neurons or muscle fibres, but they can, under special circumstances, differentiate and repair damaged tissue. Is it possible that we can collect and manipulate these cells in the laboratory, and grow these undifferentiated stem cells to make other specialized (differentiated) cell types? Cell biologists have been doing this for a while. Figure 1 gives a broad outline of the process.
Figure 1

Stem Cells are cells that can change (differentiate) into several different cell types.

The five-day blastocyst, (which later becomes the embryo) used to harvest embryonic stem cells, abundant inside it's ball of cells, is equivalent in size to a fraction of the size of the period at the end of this sentence. There are no specialized tissues, organs, nor self-awareness. However, the use of embryonic stem cells presents ethical concerns to many because of beliefs that this structure is a human individual and has potential to develop into a human being. The centre of the ball contains about 30 stem cells.

Adult Stem Cells only recently were discovered to be suitable for use in therapy. Two recent discoveries buttressed this: The cells were found and cultured in brain and other organs and can be grown and maintained in the laboratory. Differentiation of these cells has been demonstrated in the lab (in vitro). So the adult stem cell is more plastic* than previously realized. In addition to adult stem cells, stem cells derived from the Wharton's Jelly of the umbilical cord of humans shows great promise in cultivability and plasticity. * Plasticity is the ability of an adult stem cell of one tissue to generate a specialized cell type of another tissue.

Weakness of the hip is more disabling, generally, than weakness lower in the leg. Muscles are also closer to the cord where new anterior horn cells could be coaxed, theoretically, to new striated muscle fibres.

Deep muscles of the torso support the spine and are in close proximity to the cord. These would be easiest to strengthen and may provide significant improvement.

Many Polio survivors have weak paraspinal and deep muscles that support the spine. This can be very disabling and destabilize the spine, resulting in impingement on adjacent nerves which compromise function. These muscles are very close to the cord and may be enervated by newly grafted motor neurons, which, because of the close proximity, would be more easily connected to these critical muscles. These new ideas in remediation of Post-Polio Syndrome should be considered in the context of stem cell therapy.

Motor Neurons produced in the lab from embryonic stem cells. Note the stringy axons and small bushy end fibres.

A Final Note on Stem Cell Therapy

At our Conference in Miami April 2007 research was one of the topics presented. It is exciting to us as we have a whole group of doctors who have become medical experts on PPS at the University of Miami, Miller School of Medicine Neurology Department: Post Polio Treatment, Education & Research Center headed by Dr. Khema Sharma, Professor & Medical Director, who are ready and willing to devote their time and energy to research if we can only raise the funds (without pay to them) to do research! They just need the funds raised, can we help do this? Editor's note......... Can we afford not to help?
The University of Miami is currently opening a neurological research center with the latest technology that they hope will draw top scientists from all over the world. There is now funding for neuron-research that has been solicited through the University's Kessinich ALS Foundation, Parkinson's' National Foundation the Bonacotti Cure for Paralysis Foundation and many other sources. There are hopes that funds can be located to implement a Post Polio Foundation modeled after the current successful Kessinich ALS Foundation that was created within the Neurology Department about eight years ago. ALS patients come from all over the world for treatment and supportive services at this number one rated ALS program.
Here are some links for you to first understand the concept on adult stem cell research.
http://www.bonemarrowstemcelltherapy.com/healing-bone-joints-stem-cells.html Theory
http://www.foxnews.com/story/0,2933,230921,00.html From Fox News
http://www.multiplemyeloma.org/treatments/3.03.02.php autologous stem cells.
http://clinicaltrials.gov/ct/show/NCT00203203 Clinic trials using you own cells.

Hehehe Corner

Two cannibals are talking. One says "I don't like my mother-in-law."
The other cannibal says "So just eat the noodles."

African-American Pioneer: Charles H. Bynam

A Fighter against Both Polio and Segregation is recognised by the March of Dimes

White Plains, NO.I., February 1, 2007 – As Americans prepare to commemorate Black History Month, the March of Dimes pays tribute to one man who fought both the dreaded epidemic disease polio and the evils of segregation, and whose legacy has not received the recognition it deserves.
Charles HE. Bynum, an African-American educator and civil rights campaigner, served as Director of Interracial Activities for the National Foundation for Infantile Paralysis (now the March of Dimes) from 1944 to 1971. In the course of his work for the March of Dimes – most of which took place in a segregated United States – Mr. Bynum travelled widely and tirelessly throughout the country to ensure that African-American children and adults received proper medical care and rehabilitation during the polio epidemics. He also was responsible for March of Dimes publicity and fundraising efforts that featured African-American "poster children" each year from 1947 to 1960.
"Many of Mr. Bynum's accomplishments are just now coming to light," said Dr. Jennifer L. Howse, president of the March of Dimes. "Scholars and historians who are continuing to evaluate African-American history have looked recently at the work that Charles Bynum did, and we hope that his contributions will become better known and appreciated. He's a quiet hero who fought both society's ills and the scourge of polio at a time when it was very difficult to do even one of those things."
Mr. Bynum, a North Carolina native, received a bachelor's degree from Lincoln University in Pennsylvania and a master's degree from the University of Pennsylvania. Prior to joining the March of Dimes, Mr. Bynum was a high school biology teacher and then dean of Texas College in Tyler, Texas. He was also assistant to the president of the Tuskegee Institute in Tuskegee, Alabama. Mr. Bynum died in 1996.

Control Your Destiny

With Dr. Jacquelin Perry
What Dr. Perry said in December 1997 when she spoke at the Rancho Los Amigos Post Polio Support Group in still applies just as much today as it did then. Dr. Perry is now in her 90's, suffers from Parkinson's, but still consults and advises patients with PPS.......... Ed.
Since retiring after a lifetime of dedicated, full time county service, Dr. Perry continues her work in a new capacity - as a volunteer. Because she continues to believe that post-polio syndrome is under-treated by the general medical community, the Rancho Post-Polio Clinic remains open and she continues as chief of Post-Polio Services. Dr. Perry also volunteers as medical consultant for the Rancho Pathokinesiology Lab. When the opportunity arises for her to speak at worldwide conferences or lectures, Dr. Perry uses the occasion to educate other medical professionals about PPS. As time passes it is becoming more and more clear to Dr. Perry that we as polio survivors have more control over our future than anyone else.
Dr. Perry advises.... Don't Push the System
At least half of the 1.5 million people who had polio have post-polio syndrome. Nothing has been added, PPS is a loss of function. The problem is that a survivor's lifestyle now exceeds his physical ability.
Dr Perry advises, "Don't push the system". She believes a polio survivor can control loss of function by controlling overuse of muscles. The way to do this is by making lifestyle changes, modifying activities, and pacing.
Polio survivors should know their own muscle strengths and plan accordingly. A study by Agre related to exhaustive fatigue confirms that
A. A person with normal muscles will recover fully from muscle fatigue in five minutes.
B. An asymptomatic polio survivor will recover in ten minutes.
C. A symptomatic polio survivor will have partial recovery in five minutes but then have further loss.
So it becomes necessary to make lifestyle modifications. Dr. Perry advises patients to:
1. Figure out what you don't have to do.
2. Get others to do the heavy work.
3. Break up work periods with rest periods.
4. Don't pride yourself on working harder.
5. Pain is a sign of injury and overuse so just don't let it happen. Figure out what causes your pain and don't do it again.
How you can Help Yourself
Dr. Perry's general activity guideline is that a polio survivor can do anything as long as it causes
NO PAIN and
NO FATIGUE that lasts longer than 10 minutes
If you are experiencing new weakness, fatigue, or pain you can help yourself now by changing your lifestyle and pacing yourself.
Survivors can control their destiny by avoiding muscle overuse strain. But Dr. Perry cautions: "Polio survivors who overuse muscles will lose strength."

Hehehe Corner

Change is inevitable except from a vending machine.

Scoliosis and Spinal instrumentation

Definition
Spinal instrumentation is a method of straightening and stabilizing the spine after spinal fusion, by surgically attaching hooks, rods, and wire to the spine in a way that redistributes the stresses on the bones and keeps them in proper alignment.
Purpose
Spinal instrumentation is used to treat instability and deformity of the spine. Instability occurs when the spine no longer maintains its normal shape during movement. Such instability results in nerve damage, spinal deformities, and disabling pain. Apart from muscular weakness caused by poliomyelitis, Spinal deformities may be caused by:
(a) birth defects
(b) fractures
(c) marfan syndrome (A rare hereditary defect that affects the connective tissue.)
(d) neurofibromatosis (A rare hereditary disease that involves the growth of lesions that may affect the spinal cord.)
(e) neuromuscular diseases
(f) severe injuries
(g) tumours
Curvature of the spine (scoliosis) is usually treated with spinal fusion and spinal instrumentation. Scoliosis is a disorder of unknown origin. It causes bending and twisting of the spine that eventually results in distortion of the chest and back. About 85% of cases occur in girls between the ages of 12 and 15, who are experiencing adolescent growth spurt. Spinal instrumentation serves three purposes. It provides a stable, rigid column that encourages bones to fuse after spinal-fusion surgery. Second, it redirects the stresses over a wider area. Third, it restores the spine to its proper alignment.
Different types of spinal instrumentation are used to treat different spinal problems. Several common types of spinal instrumentation are explained below. Although the details of the insertion of rods, wires, and hooks varies, the purpose of all spinal instrumentation is the same - to correct and stabilize the backbone.
Harrington rod
The Harrington Rod is one of the oldest and most proven forms of spinal instrumentation. It is used to straighten and stabilize the spine when curvature is greater than 60 degrees. It is an appropriate treatment for scoliosis.
Advantages of the Harrington rod are its relative simplicity of installation, the low rate of complications, and a proven record of reducing curvature of the spine. The main disadvantage is that the patient must remain in a body cast for about six months, then wear a brace for another three to six months while the bone fusion solidifies.
Luque rod
Luque rods are custom contoured metal rods that are fixed to each segment (vertebra) in the affected part of the spine. The main advantage is that the patient may not need to wear a cast or brace after the procedure. The main disadvantage is that the risk of injury to the nerves and spinal cord is higher than with a some other forms of instrumentation. This is because wires must be threaded through each vertebra near the spinal column, increasing the risk of such damage. Luque rods are sometimes used to treat scoliosis.
Drummond instrumentation
Drummond instrumentation, also called Harri-Drummond instrumentation, uses a Harrington rod on the concave side of the spine and a Luque rod on the convex side. The advantage is that each vertebra segment is fixed, with the risk of nerve injury decreased over Luque rod instrumentation. The disadvantage is that, like Harrington rod instrumentation, the patient must wear a cast and a brace after surgery.
Cotrel-Dubousset instrumentation
Cotrel-Dubousset instrumentation uses hooks and rods in a cross-linked pattern to realign the spine and redistribute the biomechanical stress. The main advantage of Cotrel-Dubousset instrumentation is that, because of the extensive cross-linking, the patient may have to wear a cast or brace after surgery. The disadvantage is the complexity of the operation and the number of hooks and cross-links that may fail.
Zeilke instrumentation
Zeilke instrumentation is similar to Cotrel-Dubousset instrumentation, but is used to treat double curvature of the spine. It requires wearing a brace for many months after surgery.
Other forms of instrumentation
The Kaneda device is used to treat fractured thoracic or lumbar vertebrae when it is suspected that bone fragments are present in the spinal canal. Variations on the basic forms of spinal instrumentation, such as Wisconsin instrumentation, are being refined as technology improves. A physician chooses the proper type of instrumentation based on the type of disorder, the age and health of the patient, and on the physician's experience.
Precautions
Since the hooks and rods of spinal instrumentation are anchored in the bones of the back, spinal instrumentation should not be performed on people with serious osteoporosis. To overcome this limitation, techniques are being explored that help anchor instrumentation in fragile bones.
Description
Spinal instrumentation is performed by a neuro and/or orthopaedic surgical team with special experience in spinal operations. The surgery is done in a hospital under general anaesthesia. It is done at the same time as spinal fusion.
The surgeon strips the muscles away from the area to be fused. The surface of the bone is peeled away. A piece of bone is removed from the hip and placed along side the area to be fused. The stripping of the bone helps the bone graft to fuse.
After the fusion site is prepared, the rods, hooks, and wires are inserted. There is some variation in how this is done based on the spinal instrumentation chosen. In general, Harrington rods are the simplest instrumentation to install, and Cotrel-Dubousset instrumentation is the most complex and risky. Once the rods are in place, the incision is closed.
Preparation
Spinal fusion with spinal instrumentation is major surgery. The patient will undergo many tests to determine the nature and exact location of the back problem. These tests are likely to include x rays, magnetic resonance imaging (MRI), computed tomography scans (CT scans), and myleograms. In addition, the patient will undergo a battery of blood and urine tests, and possibly an electrocardiogram to provide the surgeon and anaesthesiologist with information that will allow the operation to be performed safely. In Harrington rod instrumentation, the patient may be placed in traction or an upper body cast to stretch contracted muscles before surgery.
Aftercare
After surgery, the patient will be confined to bed. A catheter is inserted so that the patient can urinate without getting up. Vital signs are monitored, and the patient's position is changed frequently so that bedsores do not develop.
Recovery from spinal instrumentation can be a long, arduous process. Movement is severely limited for a period of time. In certain types of instrumentation, the patient is put in a cast or thick plastic brace (removable at night) to allow the realigned bones to stay in position until healing takes place. This can be as long as six to eight months. Some patients will need to wear a brace after the cast is removed.
During the recovery period, the patient is taught respiratory exercises to help maintain respiratory function during the time of limited mobility. Physical therapists assist the patient in learning self-care and in performing strengthening and range of motion exercises. Length of hospital stay depends on the age and health of the patient, as well as the specific problem that was corrected. The patient can expect to remain under a physician's care for many months.
Risks
Spinal instrumentation carries a significant risk of nerve damage and paralysis. The skill of the surgeon can affect the outcome of the operation, so patients should look for a hospital and surgical team that has a lot of experience doing spinal procedures.
After surgery there is a risk of infection or an inflammatory reaction due to the presence of the foreign material in the body. Serious infection of the membranes covering the spinal cord and brain can occur. In the long-term, the instrumentation may move or break, causing nerve damage and requiring a second surgery. Some bone grafts do not heal well, lengthening the time the patient must spend in a cast or brace, or necessitating additional surgery. Casting and wearing a brace may take an emotional toll, especially on young people. Patients who have had spinal instrumentation must avoid contact sports, and, for the rest of their lives, eliminate situations that will abnormally put stress on their spines.
Normal results
Many young people with scoliosis heal with significantly improved alignment of the spine. Results of spinal instrumentation done for other conditions vary widely.
Editor's Note...........
Between 1954 and 1970, 351 patients with severe paralytic scoliosis were treated at Rancho Los Amigos Hospital. During this time the treatment evolved through five stages: body cast alone, halo cast, halo cast with buttons and traction wires, Harrington instrumentation, and finally preoperative halo-femoral traction and Harrington instrumentation. Coincident with this evolution, correction improved from 20 to 57 per cent, the incidence of curve progression dropped from 38 to 0 per cent, and curve extension decreased from 25 to 0 per cent, while postoperative recumbency was reduced from one year to about three weeks. In addition, complications changed, in general decreasing except for the rate of pseudarthrosis, which remained essentially the same. Clinically significant hyperlordosis involving the thoracic and lumbar spine was seen in sixteen patients who had long fusions from the fourth cervical vertebra and above to the fourth lumbar vertebra or the sacrum.

Hehehe Corner

Nobody listens to you until you make a mistake

Living with Post Polio Syndrome

Decades after surviving polio, many individuals are faced with the pain, fatigue and muscle weakness of post-polio syndrome (PPS). PPS is believed to affect between 20% and 40% of polio survivors in the United States. Those who had more severe cases of polio generally have more severe cases of PPS as well. There is no cure for PPS but generally speaking, it is not a life threatening condition. However, it does sometimes affect the respiratory muscles, and that can be dangerous.
In the course of recovery from polio, the body compensates for the loss of nerve cells by sprouting extra nerve endings to restore function to muscles. It is believed that these "axonal sprouts" eventually fail after years of use, resulting in loss of muscle strength, pain and fatigue. In essence, the muscle fibre loses its ability to contract in an efficient manner. This may eventually lead to joint pain and skeletal deformities. But PPS is a "very slowly progressing condition marked by long periods of stability," according to the National Institute of Neurological Disorders and Stroke. For example, patients may realize that in years past they could walk long distances, but are now fatigued by walking in the grocery store. Or they have pain or weakness in an area of the body they thought was unaffected by polio. However, not every polio survivor who has aches and pains or experiences fatigue has post-polio syndrome. Diagnosis of post-polio syndrome is difficult because there is no test for PPS, and symptoms may be similar to other neuromuscular conditions such as fibromyalgia, or even depression. Laboratory tests, magnetic resonance imaging (MRI) or other studies may be performed at some point to exclude other causes of PPS-like symptoms. But a thorough medical history, physical and routine blood work may be the first steps in diagnosis.
Electromyography (EMG) is often performed to assess the status of nerve functioning; active nerve irritation, for example, may be a symptom of a more serious form of PPS. In addition, muscle strength may be measured over a period of time to demonstrate muscle atrophy. Another sign of PPS is that the individual has experienced at least 10 years of proper muscle functioning. There is no known way to prevent post-polio syndrome.
Treatment
Lifestyle changes are the mainstay of treating PPS. Patients should pace activities; don't clean the entire house in one day, for example. They should use energy-conservation principles; simplify tasks as much as possible, focusing only on critical daily activities; and slow down.
Occupational and physical therapy may help with lifestyle changes. Patients should avoid overexertion of muscles. They may need to use braces, crutches or wheelchairs. Patients who used equipment to help them breathe (such as an iron lung) during their initial polio infection may be at greater risk of having sleep and breathing disorders that require nighttime respiratory support.
PPS may affect a person's mobility and ability to perform daily activities. A general, flu-like fatigue is probably the most common symptom responsible for disability from PPS. Managing fatigue may involve relocating household supplies for easier access, taking regular breaks and rest periods throughout the day, and getting a good night's rest. (Sleep apnoea, a serious condition in which breathing temporarily stops hundreds of times a night, is common among polio survivors.)
The right kind of exercise, if carefully supervised by a physician or physical therapist, may help treat PPS. Exercising in water, for example, reduces strain on weak joints and is easier on the body than exercise done on land.
PPS patients should also consider networking with other patients, such as through a support group. They may pick up ideas from their peers to make living with PPS easier. Patients in contact with their peers tend to do better from an emotional standpoint, as well.
Mestinon, a medication also used to treat myasthenia gravis, may be prescribed, particularly for patients with more serious post-polio syndrome. The drug works to improve the connections between nerves and muscles. However, it is difficult to predict how much relief Mestinon will provide in a patient or how low long the relief will last. Remember to talk to your Doctor before trying any new medication!!
Strengthening exercises, physical therapy and over-the-counter or prescription medication may help ease pain. Applying ice or heat or using ultrasound or transcutaneous electrical nerve stimulation (TENS) may also relieve pain. Rest may also help with pain. Remember that pain may be caused by other co-existing conditions, such as arthritis, that may have to be treated separately.

Hehehe Corner

I'm tired. For a couple years I've been blaming it on iron-poor blood, lack of vitamins, dieting, PPS and a dozen other maladies that make you wonder if life is really worth living. But now I found out, it ain't that.

I'm tired because I'm overworked.

The population of this country is 237 million.
104 million are retired. That leaves 133 million to do the work.

There are 85 million in school, which leave 48 million to do the work
Of this there are 29 million employed by the federal government.
This leaves 19 million to do the work.
Four million are in the Armed Forces, which leaves 15 million to do the work.
Deduct the 14,800,000 people who are in the State and City Government Offices and that leaves 200,000 to do the work.
There are 188,000 in hospitals, so that leaves 12,000 to do the work.
Now, there are 11,998 people in prisons.
That leaves just two people to do the work.

You and me.

And you're sitting there reading this.

No wonder I'm tired.

Did You Eat Breakfast Today?

"Breakfast? Sorry, don't have the time. There's too much to do in the morning, like showering and dressing and getting to work. I grab a cup of coffee (or two or three) and maybe a donut at work..."
"Lunch? Don't think so. I'm still catching up from my late start in the morning. I grab a cup of coffee (or two or three) and maybe wolf down half a Big Mac..."
"Dinner? I'm either too tired or I could eat a horse. I either defrost a piece of pizza and drag myself into bed or I eat everything that isn't nailed down!
"So why am I totally exhausted and why can't I stop gaining weight?"
Americans are not very good at taking good care of themselves and Americans with disabilities are just as bad. It takes so much time to do things that able bodied people do in a flash, like showering and dressing, so there's hardly any time or energy left for planning meals, shopping, cooking... and, of course, eating.
Most polio survivors experience Post-Polio Sequelae (PPS) and need to use new assistive devices or aids that they discarded years ago, like braces, canes, crutches, wheelchairs and scooters, and to slow down and to rest during the day. The problem is, most polio survivors are Type A, hard working, pressured, perfectionistic super-achievers, who have pushed themselves beyond their physical limits and haven't any time for good food. Polio survivors don't want to slow down or rest, they're afraid that if they are less Type A, people won't like them, also because they are afraid of gaining weight if they become more sedentary. But they shouldn't be afraid. Food is good! Eating properly doesn't lead to getting fat, and it actually reduces PPS symptoms. The less protein polio survivors ate at breakfast the more severe are their daily weakness and fatigue.
That means that polio survivors are running their nervous systems on "half a tank of gas." Some of the brain stem and motor neurons were killed by the poliovirus. Now, their internal power plant (the neurons that survived the original polio infection) are severely damaged. So polio survivors have been running their lives on half the normal number of neurons, which are less able to use their only source of fuel, blood sugar.
Protein
Protein provides a long lasting slow release supply of blood sugar throughout the day. Those PPS'ers who had protein for breakfast experience fewer PPS symptoms because their fuel tank is filled with a better quality fuel. They didn't need to "fill up" during the day with sugar "fixes" like sodas and candy bars, which are very short lasting fixes anyway.
Mom was right about one thing: Breakfast really is the most important meal of the day.
Since a polio survivor can use more energy just getting showered and dressed than an able bodied person does when running a marathon, you need protein early and often. Eat breakfast before showering. That will fill your tank before your neurons need the fuel. When we ask our post-polio patients to eat protein every day at breakfast, and have small, non-carbohydrate snacks throughout the day, they report an almost immediate reduction in nearly all the symptoms of PPS, especially fatigue.
The "protein power" diet is neither a fad nor a miracle; it's just common sense. No engine can be expected to run without fuel!
Don't think that using a wheelchair, resting more and having breakfast will cause you to get fat and have more PPS symptoms. A four-year follow-up study found that U.S. and Swedish polio survivors, living their typical Type A "use it or lose it" lifestyles without using new assistive devices or resting, lost equal amounts of leg muscle strength, about 2 percent per year. However, when subjects from the two countries were looked at separately, the Swedes gained only 6 ounces per year, while the Americans gained over 2 pounds; that's 220 percent more weight! Although weight gain alone is not responsible for the progression of muscle weakness in polio survivors, it is Americans' high fat, Big Mac diet that causes them to get fat. You can fuel your neurons, feel stronger and less fatigued without gaining weight, if you choose low fat, low cholesterol sources of protein. In fact many PPS'ers, even as they slow down, sit down more, and use a scooter, lose weight (about a pound per week) if they eat more protein, reduce portion size and limit carbohydrates.
For heaven's sake, don't go on one of those "All protein and no carbohydrate" diets. They are not good for you. Eat 16 grams of protein at breakfast; that's about a quarter of the daily protein requirement (70 grams) for a 150 pound person. (Always check with your doctor, especially if you have kidney problems, before changing your diet and ask to have your cholesterol measured at your yearly check up.)