IPPSO NEWS MAGAZINE

 Vol 2 No. 22 October 2009                               Editors: Mike and Yvonne Isaacson

                It is ability that counts - not disability                                  

                                                                     

Halloween issue 2009

 

 

 

Disclaimer

The views of those who contribute to this publication are not necessarily in agreement with those held either by IPPSO or by the editors of this publication.

 

An Animated Film for you....

If you look on the "Attach" line on this email (just below the "Subject" line) you will see an icon called "Halloween2.exe". Turn on your speakers, adjust the sound, double-click that icon and watch a short Halloween animated movie. Where did I get it from? Oh, that's what my wife Yvonne does as a hobby. She is the Producer, Director, Animator and Chief Everything of "Granny Yvonne Films". She makes them for our grandkids but as a special favor.... here is one for you. Let me know if you enjoyed it. Send me an email to myisaacson@Plugg.co.za

 

From the Editor's Desk

This issue celebrates Halloween - a holiday celebrating witches, pumpkins, tricks, treats and ghosts (by the way - did you know that Casper the Friendly Ghost has polio? He does too!) spiders, skeletons and creepy crawlies, so if any of those things scare you, now is the time to dive underneath the bedclothes and shut your eyes tightly.

Also, although "Hand Washing Day" is long past (It was on October 15th) it is always worth calling it to mind because of the importance of washing one's hands to keep the germs away. If you go back to around 1847 you will come across the name of Dr. Ignaz Semmelweiss, who worked in the maternity wards at the Vienna Clinic in Austria. It was the practice at that time to go from patient to patient and examine them, handling their genitalia without washing one's hands at all. Puerperal fever reigned supreme and the mortality rate was extremely high until Semmelweiss finally realised that it was the Doctors themselves who were spreading the disease by not washing their hands between visits to expectant mothers. He proposed and insisted upon a radical hand washing theory using chlorinated lime, now a known disinfectant, and the mortalility rate amongst birthing women dropped to almost zero.                                                                                         Mike Isaacson

 

Hehehe Corner

We are told by a normally reliable source that being kissed by a vampire is a pain in the neck. 

                                                                                                                                                            

Pain

That's something that every  one of us experiences on a daily basis. What exactly is it? Why does it happen? Is it helpful? Is it bad? Can anything be done to ease it? Well..... let's look into it in more detail:-

What Pain Is Pain is a feeling triggered in the nervous system. Pain may be sharp or dull. It may come and go, or it may be constant. You may feel pain in one area of your body, such as your back, abdomen or chest or you may feel pain all over, such as when your muscles ache from the flu.

Is Pain Helpful? Pain can be helpful. Without pain, you might seriously hurt yourself without knowing it, or you might not realize you have a medical problem that needs treatment. Once you take care of the problem, pain usually goes away. However, sometimes pain goes on for weeks, months or even years. This is called chronic pain. Sometimes chronic pain is due to an ongoing cause, such as cancer or arthritis or, of course PPS. Sometimes the cause is unknown.

How is pain diagnosed? There is no way to tell how much pain a person has. No test can measure the intensity of pain, no imaging device can show pain, and no instrument can locate pain precisely. Sometimes, as in the case of headaches, physicians find that the best aid to diagnosis is the patient's own description of the type, duration, and location of pain. Defining pain as sharp or dull, constant or intermittent, burning or aching may give the best clues to the cause of pain. These descriptions are part of what is called the pain history, taken by the physician during the preliminary examination of a patient with pain.

Can the cause of pain be discovered? Physicians do have a number of technologies they can use to find the cause of pain. Primarily these include:

How is pain treated? The goal of pain management is to improve function, enabling individuals to work, attend school, or participate in other day-to-day activities. Patients and their physicians have a number of options for the treatment of pain; some are more effective than others. Sometimes, relaxation and the use of imagery as a distraction provide relief. These methods can be powerful and effective, according to those who advocate their use. Whatever the treatment regime, it is important to remember that pain is treatable. The following treatments are among the most common. But, talk to your Doctor before trying any of the following:- 

Acetaminophen is the basic ingredient found in Tylenol® and its many generic equivalents. It is sold over the counter, in a prescription-strength preparation, and in combination with codeine (also by prescription).

Acupuncture dates back 2,500 years and involves the application of needles to precise points on the body. It is part of a general category of healing called traditional Chinese or Oriental medicine. Acupuncture remains controversial but is quite popular and may one day prove to be useful for a variety of conditions as it continues to be explored by practitioners, patients, and investigators.

Analgesic refers to the class of drugs that includes most painkillers, such as aspirin, acetaminophen, and ibuprofen. The word analgesic is derived from ancient Greek and means to reduce or stop pain. Nonprescription or over-the-counter pain relievers are generally used for mild to moderate pain. Prescription pain relievers, sold through a pharmacy under the direction of a physician, are used for more moderate to severe pain.

Anticonvulsants are used for the treatment of seizure disorders but are also sometimes prescribed for the treatment of pain. Carbamazepine in particular is used to treat a number of painful conditions, including trigeminal neuralgia. Another antiepileptic drug, gabapentin, is being studied for its pain-relieving properties, especially as a treatment for neuropathic pain.

Antidepressants are sometimes used for the treatment of pain and, along with neuroleptics and lithium, belong to a category of drugs called psychotropic drugs. In addition, anti-anxiety drugs called benzodiazepines also act as muscle relaxants and are sometimes used as pain relievers. Physicians usually try to treat the condition with analgesics before prescribing these drugs.

Antimigraine drugs include the triptans- sumatriptan (Imitrex®), naratriptan (Amerge®), and zolmitriptan (Zomig®)-and are used specifically for migraine headaches. They can have serious side effects in some people and therefore, as with all prescription medicines, should be used only under a doctor's care.

Aspirin may be the most widely used pain-relief agent and has been sold over the counter since 1905 as a treatment for fever, headache, and muscle soreness.

Biofeedback is used for the treatment of many common pain problems, most notably headache and back pain. Using a special electronic machine, the patient is trained to become aware of, to follow, and to gain control over certain bodily functions, including muscle tension, heart rate, and skin temperature. The individual can then learn to effect a change in his or her responses to pain, for example, by using relaxation techniques. Biofeedback is often used in combination with other treatment methods, generally without side effects. Similarly, the use of relaxation techniques in the treatment of pain can increase the patient's feeling of well-being.

Capsaicin is a chemical found in chili peppers that is also a primary ingredient in pain-relieving creams 

Chemonucleolysis is a treatment in which an enzyme, chymopapain, is injected directly into a herniated lumbar disc in an effort to dissolve material around the disc, thus reducing pressure and pain. The procedure's use is extremely limited, in part because some patients may have a life-threatening allergic reaction to chymopapain.

Chiropractic care may ease back pain, neck pain, headaches, and musculoskeletal conditions.  It involves "hands-on" therapy designed to adjust the relationship between the body's structure (mainly the spine) and its functioning.  Chiropractic spinal manipulation includes the adjustment and manipulation of the joints and adjacent tissues.  Such care may also involve therapeutic and rehabilitative exercises.

Cognitive-behavioral therapy involves a wide variety of coping skills and relaxation methods to help prepare for and cope with pain. It is used for postoperative pain, cancer pain, and the pain of childbirth.

Counseling can give a patient suffering from pain much needed support, whether it is derived from family, group, or individual counseling. Support groups can provide an important adjunct to drug or surgical treatment. Psychological treatment can also help patients learn about the physiological changes produced by pain.

COX-2 inhibitors may be effective for individuals with arthritis. For many years scientists have wanted to develop a drug that works as well as morphine but without its negative side effects. Nonsteroidal anti-inflammatory drugs (NSAIDs) work by blocking two enzymes, cyclooxygenase-1 and cyclooxygenase-2, both of which promote production of hormones called prostaglandins, which in turn cause inflammation, fever, and pain. The newer COX-2 inhibitors primarily block cyclooxygenase-2 and are less likely to have the gastrointestinal side effects sometimes produced by NSAIDs.

In 1999, the Food and Drug Administration approved a COX-2 inhibitor-celecoxib-for use in cases of chronic pain. The long-term effects of all COX-2 inhibitors are still being evaluated, especially in light of new information suggesting that these drugs may increase the risk of heart attack and stroke. Patients taking any of the COX-2 inhibitors should review their drug treatment with their doctors.

Electrical stimulation, including transcutaneous electrical stimulation (TENS), implanted electric nerve stimulation, and deep brain or spinal cord stimulation, is the modern-day extension of age-old practices in which the nerves of muscles are subjected to a variety of stimuli, including heat or massage. Electrical stimulation, no matter what form, involves a major surgical procedure and is not for everyone, nor is it 100 percent effective. The following techniques each require specialized equipment and personnel trained in the specific procedure being used:

Once again, talk to your Doctor before taking any of these medications. They can help, but they can harm too. What this shows though, is that there is a lot that can be done to treat and relieve pain.

 

Hehehe Corner

The "Witches Daily Newspaper" reports that a ghost in a dead-end street was knocked over by a skeleton crossing the road to get to the Body Shop.

 

An Index to Articles in the IPPSO Magazines

Many of you will know that copies of previous issues of the IPPSO magazines are available on our website at http://international-post-polio-support.org  There is nothing more annoying than remembering that there was an article in one of the magazines about something that you desperately need to know about but you just cannot remember which issue it appeared in. Well, our President, Barbara Gratzke, is compiling that much needed index which should soon be available to you! Now is that good news, or is that good news? Our grateful thanks are due to Barbara for undertaking this work.

What follows is not a complete index - yet. Barbara is still compiling it, but here's a taste of things to come.....

IPPSO Online Magazine - Vol 2 No 21 - September 2009

1.      From the Editors Desk: Alternative Medicine - Good or Bad?

2.       Arlene Zlotnick - Polio Survivor, Wins Her Final Battle – Posthumously - From Micki Minner

3.       Try these remedies and see for yourself –

4.       Braniac? Polio Brain?

a.         Physical Attributes

b.       The Developing Brain

c.       Moments in History

5.      Barbara Gratzke Reports on International PPS conference , Warm Springs, April 2009

6.      Gladys Swensrud and the Salk Institute

7.      Social Security Disability Insurance Secrets – web site

8.      Health Benefits of Omega 3 Fatty Acids

9.      The E Z Pull – device to pull door shut from wheelchair

IPPSO Online Magazine - Vol 2 No 19 - August 2009

1.      From the Editors Desk  - about muscles

2.      Poem (written by Susan Kerr)    

3.      Muscles

a.      PHYSIOLOGY

b.      MOVEMENT

c.      Neuromuscular Disease

d.      Physical inactivity and atrophy

4.      More on Sleep Apnea

5.      Meet Cilla Webster

6.      Fatigue in Post-poliomyelitis Syndrome  (study byTrojan DA, Arnold DL, Shapiro S, Bar-Or A, Robinson A, Le Cruguel JP, Narayanan S, Tartaglia MC, Caramanos Z, Da Costa D. )

7.      Clinical Depression 

IPPSO Online Magazine - Vol 2 No 19 - July 2009

1.      From the Editors Desk – about sleep

2.      How Sleep Works - a Rough Guide

3.      How Sleep Patterns Change Over Lifetime

4.      Taking a Sleep Study

5.      Abnormal Movements in Sleep as a PPS'er

6.      Sleep Disorders

a.      Obstructive Sleep Apnea (OSA)

b.      Central Sleep Apnea (CSA)

c.      Hypoventilation

d.      Muscle Twitching

e.      Sleep Paralysis

f.        Insomnia

g.      Narcolepsy

7.      BiPAP and CPAP Machines

a.      Other Devices to Improve Airway Pressure.

8.      Polio Survivor Registry (From Gladys Swensrud)

9.      Salk Institute Reaches Out to the PPS Community (by Gladys Swensrud)

10.  Police recommend Wasp Spray (from Shari Fiksdal)

IPPSO Online Magazine - Vol 2 No 18 - June 2009

1.      From the Editors Desk – disappointed have not received more polio stories – please send yours

2.      Women With PPS Experience Menopause Differently Than the Non-disabled  (nationwide study  by a team of researchers from the University of Michigan Health System )

3.      Wnt7a Activates the Planar Cell Polarity Pathway to Drive the Symmetric Expansion of Satellite Stem Cells. - (Le Grand F, Jones AE, Seale V, Scimè A, Rudnicki MA. - Sprott Center for Stem Cell Research, Ottawa Hospital Research Institute, Regenerative Medicine Program, 501 Smyth Road, Ottawa, ON K1H 8L6, Canada; Department of Medicine, University of Ottawa, 451 Smyth Road, Ottawa, ON K1H 8M5, Canada.)

4.      Itzhak Perlman - Violinist Extraordinaire

5.      About the Handicapped Travel Club, Inc

6.      Normal Sized People Get No Respect

7.      2009 Euro Health Consumer Index

8.      Eradication of Polio

a.      Risk for U.S. importation

b.      Easing vaccine anxiety

c.      What’s next in endemic countries?

d.      Postpolio paradigm shift

e.      The global economy

9.      Changes in ability, perceived difficulty and use of assistive devices in everyday life: a 4-year follow-up study in people with late effects of polio. (Thorén-Jönsson AL , Willén C, Sunnerhagen KS .
The Institute of Neuroscience and Physiology - Section for Clinical Neuroscience and Rehabilitation Gothenburg University , Göteborg , Sweden .)

10.  Useful items to make life easier

a.      Handi-Robe™ -can  put on without standing up

b.      ADULT BLANKET SLEEPER - zips down the front or the back

c.      ONE PIECE PAJAMAS -  The garment has a back zipper and an elastic waist

 

Mouse Model Developed for Post Polio Research

In the winter of 2001, Burk Jubelt, MD, and Jeremy Shefner, MD, of Upstate Medical University, Syracuse, New York, and Rob Morris, who had polio as an infant, sat down to discuss the existing therapeutic alternatives for the array of symptoms seen in post-polio syndrome.

The criteria for the diagnosis of post-polio syndrome (PPS) include:

A prior episode of poliomyelitis with residual motor neuron loss (can be confirmed by typical history, neurological examination, or electromyography);

A period (usually >15 years) of neurologic and functional stability after recovery from the acute illness;

The gradual or rarely abrupt onset of new weakness or abnormal muscle fatigue, muscle atrophy, or generalized fatigue; and

Exclusion of other conditions that could cause similar manifestations.1

It was clear that the current therapies are supportive and decrease weakness, pain and fatigue, etc., rather than halt or reverse the underlying pathology, or the cause.

Eventually, the conversation turned to the relatively recent developments in regenerative and neuro-protectant medical research. The obvious question was whether or not some of that work might be applicable to post-polio syndrome. The conclusion was that, in theory, certain combinations of pharmaceuticals, nerve growth factors and cellular therapies might result in useful therapies. However, in order to test any of the new therapies a reliable animal model of post-polio syndrome would have to be created, as trying such therapies first on human subjects would be unethical.

Morris agreed to provide funding for a research proposal crafted by Jubelt, Rapka and Shefner to develop a post-polio mouse model. A group of mice were infected with the poliovirus and then the researchers compared their neurological development with that of a group of mice that were not similarly infected with the poliovirus (a control).

The plan was to follow the mice for over a year and measure both their level of nerve damage and muscle function. Then, other studies would be performed on the mice to examine the three principal theories of the pathology of post-polio syndrome.

Degenerative theory, the most widely held theory, postulates that the new sprouts which grew to substitute for the sprouts killed by the original infection are dying back due to exhaustion from increased metabolic demand over years of use.

Viral theory hypothesizes that the old poliovirus has either lain dormant in the central nervous system or mutated into a form that is slowly destroying nerve tissue. No conclusive evidence for this theory has ever been established.

Immune mediated theory implies that inflammation or an auto-immune mechanism has led to the symptoms. Empirical evidence for this theory has been contradictory.2

An abstract published by Drs. Jubelt, Rapka, and Shefner in Neurology (Apr. 1, 2002, Suppl. 3) indicates that the mice exhibited electromyographic patterns similar to that seen in individuals with post-polio syndrome. (See figure 1, below) The mice had a decreased number of motor units (MUNE in Figure 1), and the remaining units were enlarged (SMUP Amplitude in Figure 1). Additionally, degenerative neurologic changes were seen in both symptomatic and asymptomatic mice.

During the summer of 2002, the mice were sacrificed and analyzed for inflammatory and viral evidence. The results of this work and the final EMG studies are expected to be completed and submitted for publication this fall.

Additional funding allowed the researchers to inoculate more mice to create a population of mature mice, analogous to a 40-year or older human experiencing post-polio syndrome. These mice will ready for further testing after additional funding for test materials is raised.

Dr. Jubelt commented, "We are very excited about the potential for the mouse model. We should be able to sort out the cause of the late weakness seen in post-polio syndrome. Once the cause is sorted out, many options are available for possible therapeutic benefit.

The model will allow us to test these different therapies."

Burk Jubelt, MD, Professor and Chairman of the Department of Neurology of SUNY Upstate Medical Center, Syracuse, New York, is also Director of the Post-Polio Clinic and the Post-Polio Research Program. Dr. Jubelt has researched post-polio syndrome for 18 years.

 

Which Scooter Shall I Buy?

Submitted by Barb Oniszczak, IPPSO Recording Secretary

 

Here are questions to keep in mind when shopping for a Power Operated Vehicle (POV)/Scooter:

Hehehe Corner

A goblin scored the winning points in a football match when he ran 60 yards to cross the ghoul line.

 

Clean Hands Saves Lives

Thursday October 15, 2009 was Global Handwashing day. October 15 will be long gone by the time that you read this, but the inportance of washing your hands will remain with us, whatever day it is. That's why this article forms part of this issue of the IPPSO Magazine.        Ed.

The practice of handwashing with soap tops the international hygiene agenda. Since its inception in 2008, which was designated as the International Year of Sanitation by the U.N. General Assembly, Global Handwashing Day has been echoing and re-inforcing the call for inproved hygiene practices worldwide. The guiding vision of Handwashing Day is a local and global culture of handwashing. Although people around the world wash their habds with water, very few wash their hands  with soap at critical moments (for example, after using the toilet, while cleaning a child and before handling food). Handwashing with soap is amongst the most effective and inexpensive ways to prevent diarrheal diseases and pneumonia, which together are responsible for the majority of child deaths. Every year more than 3.5 million children do not live to celebrate their fifth birthday because of diarrhea and pneumonia. Yet, despite its life saving potential, handwashing with soap is seldom practiced and not always easy to promote. Handwashing with soap works by interrupting the transmission of disease. Hands often act as vectors that carry disease-causing pathogens from person to person, either through direct contact or indirectly via surfaces. When not washed with soap, hands that have been in contact with human or animal faeces, bodily fluids like nasal excretions, and contaminated foods or water can transport bacteria, viruses and parasites to unwitting hosts. So, wash your hands right now - with soap - even if you don't think that you need to. It cannot possibly do you any harm, and in any case, who was using you computer keyboard just before you?

 

Hehehe Corner

All Doctors have dirty hands. That's why they are always washing them! 

 

Halloween

Halloween is an annual celebration, but just what is it actually a celebration of? And how did this peculiar custom originate? Is it, as some claim, a kind of demon worship? Or is it just a harmless vestige of some ancient pagan ritual?

The word itself, "Halloween," actually has its origins in the Catholic Church. It comes from a contracted corruption of All Hallows Eve. November 1, "All Hollows Day" (or "All Saints Day"), is a Catholic day of observance in honor of saints. But, in the 5th century BC, in Celtic Ireland, summer officially ended on October 31. The holiday was called Samhain (sow-en), the Celtic New year. 

One story says that, on that day, the disembodied spirits of all those who had died throughout the preceding year would come back in search of living bodies to possess for the next year. It was believed to be their only hope for the afterlife. The Celts believed all laws of space and time were suspended during this time, allowing the spirit world to intermingle with the living.                                                                                                                      

Naturally, the still-living did not want to be possessed. So on the night of October 31, villagers would extinguish the fires in their homes, to make them cold and undesirable. They would then dress up in all manner of ghoulish costumes and noisily parade around the neighborhood, being as destructive as possible in order to frighten away spirits looking for bodies to possess.

Probably a better explanation of why the Celts extinguished their fires was not to discourage spirit possession, but so that all the Celtic tribes could relight their fires from a common source, the Druidic fire that was kept burning in the Middle of Ireland, at Usinach.

Some accounts tell of how the Celts would burn someone at the stake who was thought to have already been possessed, as sort of a lesson to the spirits. Other accounts of Celtic history debunk these stories as myth. 

The Romans adopted the Celtic practices as their own. But in the first century AD, Samhain was assimilated into celebrations of some of the other Roman traditions that took place in October, such as their day to honor Pomona, the Roman goddess of fruit and trees. The symbol of Pomona is the apple, which might explain the origin of our modern tradition of bobbing for apples on Halloween.

The thrust of the practices also changed over time to become more ritualized. As belief in spirit possession waned, the practice of dressing up like hobgoblins, ghosts, and witches took on a more ceremonial role.

The custom of Halloween was brought to America in the 1840's by Irish immigrants fleeing their country's potato famine. At that time, the favorite pranks in New England included tipping over outhouses and unhinging fence gates. The custom of trick-or-treating is thought to have originated not with the Irish Celts, but with a ninth-century European custom called souling. On November 2, All Souls Day, early Christians would walk from village to village begging for "soul cakes," made out of square pieces of bread with currants. The more soul cakes the beggars would receive, the more prayers they would promise to say on behalf of the dead relatives of the donors. At the time, it was believed that the dead remained in limbo for a time after death, and that prayer, even by strangers, could expedite a soul's passage to heaven.

The Jack-o-lantern custom probably comes from Irish folklore. As the tale is told, a man named Jack, who was notorious as a drunkard and trickster, tricked Satan into climbing a tree. Jack then carved an image of a cross in the tree's trunk, trapping the devil up the tree. Jack made a deal with the devil that, if he would never tempt him again, he would promise to let him down the tree.

According to the folk tale, after Jack died, he was denied entrance to Heaven because of his evil ways, but he was also denied access to Hell because he had tricked the devil. Instead, the devil gave him a single ember to light his way through the frigid darkness. The ember was placed inside a hollowed-out turnip to keep it glowing longer.

The Irish used turnips as their "Jack's lanterns" originally. But when the immigrants came to America, they found that pumpkins were far more plentiful than turnips. So the Jack-O-Lantern in America was a hollowed-out pumpkin, lit with an ember.

So, although some cults may have adopted Halloween as their favorite "holiday," the day itself did not grow out of evil practices. It grew out of the rituals of Celts celebrating a new year, and out of Medieval prayer rituals of Europeans. And today, even many churches have Halloween parties or pumpkin carving events for the kids. After all, the day itself is only as evil as one cares to make it.

Hehehe Corner

Two spiders recently got married. The newlywebbed couple are presently on Honeymoon in Maliboo.

Mary Ann Liethof

Many of you will remember the series we published that was researched and written by Mary Ann Liethof, but are you aware that a lot of her interviews with several well-known PPS Doctors,and Physiotherapists etc. are available on You Tube? There are twenty-four interviews that were filmed. To begin with, start at.....

http://www.youtube.com/watch?v=J1j4Nps3saY&feature=related

And a Final Hehehe

A Game Warden at the Okefenokee Swamp is said to have arrested a ghost becaise it didn't have a haunting licence. The same warden was unsuccessful in attempting to arrest a vampire on the loose because he was all bite and no bark.