FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

CONTENTS

From Barbara

Counting Spoons

PPS and Diabetes

The New Alphabet

Medicare Offers Plan D

SHINE Assistance Available on the Web

Ten Things to Know About Formularies

What to Consider When Selecting a Prescription Drug Plan

Stem Cells for Polio Survivors

Can You Read This

Inflammation and PPS

Believing in Yourself

Visit to Thailand

Dues

Some Things that Finally Make Sense

Are You a Reason, a Season or a Lifetime

Doctor’s Advice

************************************

FROM BARBARA

Our March meeting will be the fourth Sunday, the 26th, as our speaker was not available for the 19th – and I also have tickets to a show for the night of the 19th. Fortunately, I was told far enough in advance to enable me to change the meeting date.

As mentioned above, Glen will be telling us all about Medicare’s Plan D. Glen has been a pharmacist with Walgreens for a number of years. In discussing his talk with me, he told me that after you discuss your prescription problems with your local Walgreens’ pharmacist and they work out what plan would be best for you, they also give you $50 worth of coupons to use in Walgreens. Glen will be giving those attending this meeting $50 worth of coupons, too. So, it’s very important to make sure we have your reservation.

Our January meeting was very well attended. There were members there who had not attended a meeting in quite a while, as well as several new members. We also welcomed back our snowbirds. The September meeting this past year was very poorly attended – only 7 members (including yours truly). Our November meeting picked up with 21 attending and, in January we had 41 members. I must tell you that when I left the September meeting I was just about ready to have just two meeting a year – one in June and one in January. My feeling was that with so few attending why should I use up my “spoons” (see article in this newsletter), when I could be home reading a good book, watching a movie, or being with friends.

However, after the last two meeting, we will continue to meet five times a year as we have been doing (January, March, May, September and November). Please keep attending the meetings. It’s very embarrassing inviting a speaker and having only 7 in attendance.

************************************

Reprinted from PPRG of S.E. Wisconsin, December 2005

Counting SPOONS

A Method of Pacing to Conserve Energy

By Judith Pipher, PPRG Member

About six months ago someone on-line mentioned The Spoons Theory and referred me to a person who is dealing with the disease Lupus (see Christine’s link below.) On her website she had this wonderful explanation of how we need to look at our daily activities in order to conserve energy. Here is a brief idea of how it works. The way Christine explains it, she was trying to describe to a close friend why she sometimes seemed to have boundless energy but at other times couldn’t even get out of bed. She had the idea to explain it using spoons.

It works something like this: Let’s say I were to give you a dozen spoons. They represent all the energy you have at your disposal for that particular day. Each spoon represents a task that you can do. So let’s start the day. Most people will say that they start by going to work. Oops! I think we missed a few steps. Let’s begin by getting out of bed – that will cost you one spoon! Next we take a shower – one more spoon. Get dressed? You guessed it – another spoon. If you fix and eat breakfast – hand over another spoon. (It doesn’t cost a spoon to stop at a fast-food place and go through the drive thru to get some breakfast, but you’ll pay for it with all the fat in those fast foods!) Then you go to work, another spoon. Know what? You have already used FIVE of your spoons for the day. Let’s hope you don’t do much hard stuff at work. For a low stress desk job – even a fun one – take away two more spoons. You’re now down to FIVE. You’ll probably want to go somewhere for lunch. We’ll call that one spoon. If your job entails stuff like traveling or going to meetings or to other people’s offices, take away another spoon for each trip. Do you have any spoons left? Remember to save some spoons to get back home and fix and eat supper and get to bed. Thinking about going somewhere in the evening? Better check on your supply of spoons. You could borrow one or two from the next day, but then you will be short on spoons for the day and will have to do without some activities – like, maybe stay home from work.

This same theory applies to people who stay home. Remember that just because you do the work at home doesn’t mean that it doesn’t take energy. Want to wash up some dishes? One spoon. Do some laundry? One spoon per load. Vacuum? One spoon per room. Take the dog for a walk? One spoon per walk. It all takes our energy. We can make trade-offs, but we are still limited to the average number of activities per day. We have to remember to count ALL of our activities. Getting dressed is an activity. Taking a shower is an activity.

Learning to pace our activities can lead to more energy on the days we are active. It can also help us to accept and to validate the need to rest on other days.

So how many spoons have you used up today?

For more information go to: www. Butyoudon’tlooksick.com.

FECPPSG Editor’s Note:- In figuring up the number of spoons I used up today, it came to 11 – getting up, taking shower, getting dressed, straightening up bed, making breakfast, paying bills and sending out birthday cards, doing lunch, doing errands, making dinner, gathering articles and starting the typing for this newsletter, getting undressed for bed – boy, am I exhausted!!! Will end the typing now and start the undressing for bed…..

************************************

Reprinted from The Southern California PPS Manager, January 2006

PPS and DIABETES

By Rick Van Der Linden

What is Diabetes?

The pancreas produces the insulin our cells need to process glucose. If the pancreas fails to make enough at the right times or if for any reason the cells are unable to use the existing insulin, the blood sugar (glucose) level can rise dangerously high and we become very sick. The disease, if ignored, can kill quickly or it can slowly destroy the entire body.

There are two basic types of diabetes.

Type 1 diabetes used to be called juvenile diabetes because it usually strikes before 30 years old. Today it is called Insulin Dependant Diabetes Mellitus and, as it’s name suggests, insulin injections are necessary to manage blood sugar level. It can come on very quickly, often after an illness such as the flu. Symptoms include frequent urination, extreme thirst, increased hunger, and weight loss.

Type 2 diabetes is the one we are most familiar with because it comprises about nine out of ten cases of diabetes. It is sometimes called adult-onset or Non-Insulin-Dependant Diabetes Mellitus. As suggested by the names, it comes on later in life and insulin injections are not necessarily required.

This is a sneaky disease because it can come on slowly as blood sugar rises and remains high. Over time, blood vessels and nerves may be damaged, causing eye, heart, blood vessel, nerve, and kidney disease.

Type 2 diabetes is the one we’ll look into here.

A Lot of People Get Diabetes These Days.

Diabetes costs our health care system $130 billion a year. That’s because there are 18 million diabetics. And, not only do diabetics require frequent checking of blood sugar level, but many are on drug or insulin therapy as well. And, each year 40 thousand get kidney disease, 24 thousand go blind, and 82 thousand have amputations.

There are also 41 million people who are prediabetic. That may explain the prediction that in 25 years the number of diabetics is expected to double.

Why?

It’s partly genetic. Early people were hunter/gatherers. Because the available foods varied seasonally, it was feast or famine. The human body developed the ability to store food internally in times of feast so they could survive the times of famine. They did this by regulating insulin to facilitate storage and burning of fat deposits as needed. Throughout most of the world these days, with all kinds of food available all the time, it’s always feast season. If you are a recent descendant of hunter/gatherers (this includes Native Americans, Africans, Islanders, and South and East Asians) there is an increased risk of diabetes.

But, it’s mostly lifestyle. It’s too easy for us to grab a snack and sit down. Television, computers, even books (of course, this does not include the PPS Manager newsletter), when coupled with super-sized cokes and fries, potato chips, and double latte cappuccinos from the drive through can add up to disaster.

What are the signs?

Those of us with Post Polio Syndrome will recognize many of the signs of diabetes. They include: Excessive thirst, frequent urination, blurred vision, increased hunger, irritability, tingling or numbness (called neuropathy) in the hands or feet, and fatigue. These symptoms can come on slowly and may go unnoticed until after the damage is done.

Other factors that may be associated to the overall problem are high blood pressure and high cholesterol – both conditions commonly linked to excessive weight.

For us, there is the added danger of attributing these symptoms to PPS and doing nothing about it.

What can YOU do?

The main cause of diabetes is too much of the wrong kinds of food (mostly sugars) and not enough exercise. It’s true that there are thin diabetics, but sick people often lose weight as a result of being sick.

If you are overweight, can’t exercise, and have a few of the warning signs, see your doctor. As with any disorder, early detection and treatment will increase your chances of a long, healthy life. Simple blood tests can detect the problem, and early treatment is also simple and very effective, starting with diet and exercise.

If you can’t exercise, and diet alone doesn’t work, your doctor might prescribe pills or insulin injections. There are new things coming along all the time.

Whether you think you have diabetes or not, why not commit yourself to a better diet? Although it would be good to eliminate French fries, cokes, mashed potatoes and gravy, etc. you could actually eat the same foods as before, just eat less. Think about it. If you wanted to reduce fats and sugars by 50%, all you have to do is eat half as much.

Oh, and if you smoke, you’re asking for all kinds of trouble.

The good news according to WebMD:- “Modest weight loss of as little as 5% to 10% of your body weight can lower your body’s resistance to insulin and increase its ability to use insulin more effectively.”

For more information visit www. diabetes.org, www.idf.org – and ask your doctor.

************************************

The following Alphabet was sent to us by one of our members – Bob Barry. Thanks, Bob

THE NEW ALPHABET

A is for Apple, and

B is for Boat,

That used to be right,

But now it won't float!

Age before Beauty is what we once said,

But let's be a bit more realistic instead.

Now A's for arthritis;

B's the bad back,

C is the chest pains, perhaps car-d-iac?

D is for dental decay and decline,

E is for eyesight, can't read that top line!

F is for fissures and fluid retention,

G is for gas which I'd rather not mention.

H is high blood pressure -- I'd rather it low;

I for incisions with scars you can show.

J is for joints, out of socket, won't mend,

K is for knees that crack when they bend.

L for libido, what happened to sex?

M is for memory, I forget what comes next!

N is neuralgia, in nerves way down low;

O is for osteo, the bones that don't grow!

P for prescription's, I have quite a few,

just give me a pill and I'll be good as new!

Q is for queasy, is it fatal or flu?

R for reflux, one meal turns to two.

S for sleepless nights, counting my fears.

T for Tinnitus; there's bells in my ears!

U is for urinary; big troubles with flow;

V is for vertigo, that's "dizzy," you know.

W is for worry, NOW what's going 'round?

X is for X ray, and what might be found.

Y is another year I'm left here behind,

Z is for zest that I still have -- in my mind.

I've survived all the symptoms, my body's deployed,

And I am keeping twenty-six 'doctors' fully employed!!!

************************************
FECPPSG Editor’s Note:- The following articles about Medicare Part D are all reprinted from the Elder Update, January/February 2006 issue.

Even if you have already signed up for a Part D Prescription Plan, this may help you – remember, you do have until May 15th of this year to change plans if you find one that suits you better.

Although these are geared for Florida residents, I’m sure that most other states have a similar Department to Florida’s Department of Elder Affairs to aide their senior citizens.

~*~*~*~*~*~

Medicare Offers Part D

Protections for Beneficiaries

Submitted by Patty Shaffer

SHINE Information Specialist

As seniors begin comparing prescription drug plans and selecting the one that best fits them, some individuals may be concerned about what Medicare is doing to protect them. Questions arose, such as: “What if I have a complaint about the drug plan I choose?” or “What if one of my prescriptions is removed from my plan’s formulary?”

Below are the answers to some of the most frequently asked questions, but should you have a question that isn’t answered below, or if you would just like more information, please call 1-800-MEDICARE (1-800-633-4227) or speak to a SHINE (Serving Health Insurance Needs of Elders) counselor by calling the Elder Helpline at 1-800-96-ELDER (1-800-963-5337).

What if I have a complaint about my drug plan?

Each drug plan has a complaint and appeal process. You will receive specific information about the process from your plan once you join, but you can also call 1-800-MEDICARE (1-800-633-4227) to speak to a consumer assistance staff member. The Centers for Medicare & Medicaid Services will investigate and resolve complaints in a timely manner.

What if my prescription is removed from my plan’s formulary?

Each drug plan has a different formulary (list of drugs). When selecting a plan, research which plans offer the prescription drugs that you need. However, formularies may change as new prescription drugs are introduced, and while drug plans are required to notify you of any changes to their formulary in advance, you may find yourself unable to get the prescriptions that you need. If this is the case, or if your doctor prescribes a medication that is not covered by your drug plan, you have a means to challenge that decision.

A “coverage determination” can be used in these cases and may require a letter from you and your physician to show the need for a particular prescription drug. A standard decision will be processed in 72 hours, with severe cases – if, for instance, you have a serious health problem – an expedited decision can be made in 24 hours.

If your coverage determination is denied, the next step is to file an appeal.

What if I suspect someone is misusing my personal information?

If you feel someone is misusing your personal information, or that they are asking for information that you do not wish to reveal, please report it by calling any of the hotlines below:

Florida Attorney General Scam Hotline – 1-866-966-SCAM

(1-800-966-7226)

Medicare Hotline – 1-800-MEDICARE (1-800-633-4227)

Fraud Hotline of the U.S. Health and Human Services Office of the Inspector General – 1-800-447-8477

Federal Trade Commission’s ID Theft Hotline – 1-877-438-4388

If you have any questions about the information contained in this article, or if you would like assistance in reviewing your plan options, please call the Elder Helpline at 1-800-96-ELDER (1-800-963-5337) and ask for a SHINE counselor.

*~*~*~*~*~*~*

SHINE Assistance Available on the Web

Submitted by Eulinda Jackson

SHINE Outreach and Publicity Coordinator

The SHINE (Serving Health Insurance Needs of Elders) program has been assisting seniors with their questions about health insurance for several years now through face-to-face counseling sessions as well as over the phone. Now that quality assistance is also available on the Internet at www.floridashine.org.

The new Web site will provide an additional way for Florida’s seniors to receive information on Medicare and other health insurance-related issues. The recent implementation of the new Medicare prescription drug coverage – also known as Medicare Part D – sped up the activation of the site which will sesrve as a helpful tool for Medicare beneficiaries in making an informed decision about which drug plan is best for them.

When navigating through SHINE’s Web site, you may click on various fact sheets that provide in-depth information about Medicare, long-term care insurance, prescription drug assistance and Medicare fraud, in addition to other topics of interest. These fact sheets have been generated by the Centers for Medicare & Medicaid Services.

In addition to the information and resource links, visitors to the site may also view the community events page, which lists all of SHINE’s scheduled outreach events throughout the state. This information is updated on a weekly basis and viewers are given the option to select the county of their choice to see where and when an educational presentation is being conducted.

SHINE will continue to be accessible to seniors via the telephone by calling the Florida Elder Helpline at 1-800-96-ELDER (1-800-963-5337). The network of more than 450 volunteers will continue to provide free and unbiased counseling over the phone, as well as on-location at various counseling sites statewide. Additionally, seniors will be able to e-mail any questions or concerns through the Web site to information@ elderaffairs.org.

*~*~*~*~*~*~*

Ten Things to Know About Formularies

A formulary is a list of drugs that a plan covers. Each plan has its own formulary, but each of them is similar because they are based on federal guidelines. That is not to say that each plan will cover the same specific prescription drugs and the differences may be important to you. You should compare formularies to find which plan’s formulary best suits your needs.

1. Different drugs, different prices – Some plans may offer a broader formulary than other plans. Plans may also have different cost sharing for a particular drug.

2. Additional choices – Plan formularies will include both generic and brand name drugs. Generic drugs are lower-cost alternatives to brand name drugs.

3. Discounted prices – A plan will be able to negotiate special prices with drug companies and pass these savings along to you.

4. Drug advances – Formularies probably won’t change very often, but when research reveals new treatments, or new generic drugs are launched, that may trigger changes in the formulary. Your plan will tell you of any changes in advance so that you and your doctor may consider different options.

5. Match your drugs to the formulary – When choosing a plan, compare the drugs on the plan’s formulary with the drugs you currently take. Discuss the options with your doctor.

6. Exceptions – Formularies are designed to meet the needs of most people, however, no formulary can meet everyone’s needs. A formulary-exceptions process will be available if your doctor determines that no substitute drug works for you.

7. Outside the plan – Federal law has excluded some drugs from the list of available prescriptions.

8. Pharmacies – Plans will usually require participants to get their drugs from specific pharmacies within a network of pharmacies that have agreed to special low prices.

9. Drugs at lower cost – If needed, your doctor can help you switch your prescriptions to drugs that are covered by your plan’s formulary. Your doctor can also help you reduce costs by switching your prescriptions to drugs with lower co-payments or to lower-cost generic drugs.

10. Drug safety – A plan will have systems set up to alert your pharmacies of potential interactions between different prescription drugs you are taking. When you obtain your drugs through your plan, your pharmacist will get these messages while he or she is filling your prescription, even if you filled other prescriptions at another network pharmacy.

To obtain information about the different formularies available in each plan, you may contact the plan of your choice and request a formulary. In addition, you may contact 1-800-MEDICARE or visit their Web site at www.Medicare.gov and select the link “Formulary Finder” to get detailed information about the plans that offer your prescription drugs. You will be able to check whether your drugs are covered by a plan and what your costs would be. For further assistance contact the SHINE (Serving Health Insurance Needs of Elders) program by calling the Elder Helpline at 1-800-963-5337. SHINE counselors are working every day to educate Medicare beneficiaries about the new program and will be available to answer questions and concerns regarding the new Medicare Prescription Drug Benefit and how formularies work.

*~*~*~*~*~*~*

What to Consider When Selecting a Prescription Drug Plan

Submitted by Karol Alvarez,

SHINE Information Specialist

As Florida’s senior begin enrolling in Medicare prescription drug plans of their choosing, there are some important issues that should be considered.

Do I Need to Enroll Right Away?

No. You have time to carefully review all options before making a decision. The initial open enrollment window began on November 15, 2005, and will last until May 15, 2006. You have up until that date to select a plan without the possibility of having to face higher premiums. Your coverage will begin on the first day of the month following your enrollment.

In addition to the initial enrollment window, each year there will be an annual coordinated election period in which beneficiaries that have yet to enroll may do so, and those who have enrolled may switch plans. This window will last from November 15 to December 30 of each year.

What Types of Plans are Available in Florida?

In general there will be several plans available to Medicare beneficiaries who wish to join a plan. Individuals who have original Medicare (Parts A and B), but who do not have prescription drug coverage, will be able to add the coverage to their original Medicare through a stand-alone Medicare prescription drug plan or a Medicare Advantage plan.

The prescription drug plan is separate from your medical coverage and there are 18 plans to choose from in Florida, each offering a variety of coverage options. In addition, there are 10 national prescription drug plans available to beneficiaries.

Medicare consumers may also choose to receive their medical care and drug coverage through a Medicare Advantage plan or other health plan. These plans offer the opportunity to receive medical health coverage through a managed care organization and their network of service providers. If you are currently in a Medicare Advantage plan, check with your current plan provider to see what your options are for drug coverage.

Current Medigap policy holders with prescription drug benefits will receive information letting them know how their coverage compares to Part D coverage.

Where Can I Find a List of Plans in Florida and Who Can Help Me Under-stand My Options?

For a list of all of the available plans in Florida, contact the SHINE (Serving Health Insurance Needs of Elders) program by calling the Florida Elder Helpline at 1-800-96-ELDER (1-800-963-5337). SHINE counselors are working every day to educate Medicare beneficiaries about Part D and are available to answer questions and concerns.

************************************

Reprinted from PPRG of S.E. Wisconsin, December 2005

STEM CELLS FOR POLIO SURVIVORS

By Ed Miller, PPRG Member

To those of you that don’t know me. I am one of the original members of our Post-Polio Group. During the past 20 years I have come to understand polio like never before. I have participated in a 10 year polio research project, and I have observed with great interest various attempts to provide improved muscle strength to us polio survivors. Most of these attempts involved various types of drug therapies. To date, I know of no one drug therapy that can strengthen our weak muscles. So what, if anything, can help us? I don’t have the answer but I do believe there is hope in the future with some of the new medical technologies.

A few years ago, around 1998, when the media started to proclaim the wonders of stem cells, I took note and began to study on the subject. As it turned out a University of Wisconsin researcher, James Thomson, was at the forefront of stem cell research. The Thomson group was the first to have embryonic stem cells that proliferated, generation after generation. This development offers the potential of having tissue trans-plantation. Once I realized this potential, I began discussing these implications with the PPRG Executive Board members. As a result of my latest report to the Board, I was asked to prepare an article about stem cells.

Stem cells are called that because of the different cells that can stem from them. They are found throughout the body, but only to an estimated 1 in 15,000 cells. However in the early embryo and in cord blood, they are more concentrated. Stem cells are generally classified as five types: embryonic; fetal – from fetal tissue (such as cord blood); neural – from brain or spinal cord tissue; adult – from adult tissue (such as organ tissue); or bone marrow – from bone marrow tissue. A single stem cell can divide and generate more cells like itself or it can produce specialized cells (such as organs). Stem cells are important tissue regenerators. This tissue has the potential to be transplanted into humans to correct various types of medical problems.

Medical advances in stem cell therapy are occurring almost daily. Two clinical trials in the U.S., using embryonic stem cells, are scheduled for 2006. One will be for spinal cord injuries and one for ALS (amyotrophic lateral sclerosis). These trials will be the first ones approved by the FDA using embryonic stem cells. To the best of my knowledge, there is no stem cell research directed towards polio survivors, at this time. This is unfortunate because the science is there and polio survivors can be helped, but we do need specific directed research for our unique problems. The Post-Polio Health International Research Fund in St. Louis is taking a step in the right direction, as they provide funds for polio related research projects. I have additional information on stem cells, so if you are interested please contact me. In the future, I will continue to up-date you on what is happening in the area of stem cell research.

FECPPSG Editor’s Note:- Will attempt to contact Ed Miller to see what else he has with respect to stem cell research.

************************************

The following was e-mailed to me by one of our New York State members, Gary Fredericks – Thanks, Gary….

Can you read this?

I thought this was interesting.

Olny srmat poelpe can.

I cdnuolt blveiee taht I cluod aulaclty uesdnatnrd waht I was rdanieg. The phaonmneal pweor of the hmuan mnid, aoccdrnig to a rscheearch at Cmabrigde Uinervtisy, it deosn't mttaer in waht oredr the ltteers in a wrod are, the olny iprmoatnt tihng is taht the frist and lsat ltteer be in the rghit pclae. The rset can be a taotl mses and you can sitll raed it wouthit a porbelm. Tihs is bcuseae the huamn mnid deos not raed ervey lteter by istlef, but the wrod as a wlohe. Amzanig huh? yaeh and I awlyas tghuhot slpeling was ipmorantt!

If you can raed tihs psas it on !!

FECPPSG Editor’s Note:- Yes, every “misspelled” word was underlined in RED by the computer’s spell check system. But it’s very interesting that we can really understand exactly what the above paragraph says – isn’t it????

************************************

INFLAMMATION and PPS

By Marcia Falconer, PhD

____________________________________________

Post-Polio Syndrome (PPS) has been a recognized condition for more than 25 years, with reports of similar symptoms going back to the 1800's. However, we still do not have a grasp of the underlying cause, or causes, of PPS!

We do not know how many polio survivors will develop PPS; estimates range from 20% to over 80%. We do not know why some polio survivors develop PPS and others do not. There is no diagnostic test and PPS remains a diagnosis arrived at after exclusion of other somewhat similar conditions. We do not understand why there is a lag time between recovery from the acute illness and development of symptoms severe enough to compromise the quality of life.

It seems there is very little that we do understand about PPS. However, if we can discover the underlying cause(s) of PPS; if we can find out what is happening at the cellular and even sub-cellular level, there is promise of being able to answer all of these perplexing issues. There is also promise of being able to treat and possibly even prevent the onset of many perhaps most, PPS symptoms.

Little research has been done on PPS, probably because polio survivors are a dying breed. After world wide eradication of polio, the 'lifespan' of PPS will be equal to that of the youngest living polio survivor. Or will it? Poliomyelitis continues to cause paralysis although now the virus causing the illness is not the polio virus but the West Nile Virus, or enterovirus 71, or one of several Coxsackie viruses.

The nerve damage caused by these viruses is virtually identical to that caused by the polio virus and therefore it is likely that PPS, perhaps by then called Post-Viral Syndrome, will continue to bring new limitations to survivors many years after they thought they had recovered. So it remains important to examine the underlying cause of new muscle weakness, central fatigue, pain, memory and word finding problems and other symptoms that accompany PPS.

Fortunately, current research in other areas holds great promise for explaining what is happening to so many polio survivors. The cause of virtually all PPS symptoms can be explained by one word: inflammation! Front line research in the fields of neurology, immunology, physiology and virology is coming together and the many pieces of the puzzle are being laid upon the table.

A good analogy is to think about a jig-saw puzzle. When you dump a 1000 piece puzzle out of the box, some pieces land right side up, others upside down. There is little hope of assembling the puzzle until you turn all the pieces right side up. The next step is to put all the straight edged pieces in a pile and then assemble the outer edge of the puzzle to give you a general outline. After this it is helpful to group pieces with similar patterns or colours together.

This is approximately where we are today in our understanding of how inflammation is related to almost all chronic diseases; PPS, MS, ALS, CFS, Parkinson's, irritable bowel syndrome, arteriosclerosis and many, many others. This also gives you some idea of how far we have to go until we have a complete picture! Let's look at the puzzle pieces that seem to belong to PPS.

Inflammation has two major causes; injury (including viral and bacterial infection, cuts, strains, operations, etc.) and psychological stress (including major events such as death of a relative, divorce, and job loss, but also including milder, repetitive stress that is encountered every day).

In a person with PPS, when the body suffers an injury, such as physically overdoing by climbing too many stairs, walking on uneven ground, etc. the first reaction is for the cells in the affected area to release a chemical messenger. This messenger, called a proinflam-matory cytokine, tells specialized cells, whose job it is to protect you from invading organisms, to come to the site of the injury. At the same time the proinflammatory cytokines activate resident cells and cells that have migrated to the injury and all of them produce more proinflammatory cyto-kines setting up a cascade of events that will involve the entire body.

Two proinflammatory cytokines, interleu-kin-1 and Tumour Necrosis Factoralpha, are especially important in triggering an acute immune response, the body's first line of defense. The acute immune response involves developing a fever, fatigue, loss of appetite, sleepiness and other symptoms. It goes away within a few days. However, if the injury is repeated often – say if a person with PPS persists in exercising a stressed out muscle – then a chronic immune response will set in. The response to chronic stress involves the entire body including the brain and produces central fatigue, new muscle weakness, problems with short term memory and word finding, irritable bowel syndrome and other symptoms.

Recognize them? Indeed. These are the post-polio syndrome symptoms we are so familiar with. In an effort to keep this article shorter than a textbook on immunology, I have omitted the complex chain of events that takes place in the body between the original stress and the onset of PPS symptoms. There are many, many research papers that amply document what happens in the body after activation of the immune system by proinflammatory cytokines and that eventually results in symptoms identical to those of PPS.

Let's take a brief look at how proinflammatory cytokines may be the underlying cause of new muscle weakness. We begin with acute polio and the death of a large number of nerves whose job was to innervate muscles by telling the muscles to contract or relax and thereby allowing you to move a leg or an arm. If 60% of the nerves leading to a leg or arm died, the limb was paralyzed. When fewer nerves died the result was varying degrees of muscle weakness.

In many people, original paralysis or severe weakness eventually resolved; voluntary movement was restored and you could once again use your arm or leg. The body developed a neat trick to allow this to happen. The surviving nerves were able to send out 'neuronal sprouts' to attach to and innervate muscles that had been orphaned when the nerve originally attached to them died off. Thus the surviving nerves were able to activate not only the muscle that they always innervated, but also surrounding muscles creating something called a "motor unit".

This repair was essentially stable for many years. However 30 or more years after recovery from polio, many people begin experiencing new muscle weak-ness. Often the weakness is in the 'good' arm or leg. This may be due to the fact that the 'good' arm or leg was used more. Clearly something happened to the neuronal sprouts; either they no longer could maintain full time attachment to the motor unit or else they may have died off completely. This caused the appearance of new muscle weakness. Once again, I've simplified this a bit – although the general picture is correct. But this is a description of what is happening, not an explanation of why it is happening.

Enter proinflammatory cytokines. Remember them? Researchers have well established that proinflammatory cytokines cause cells to release neurotoxic proteins. These neurotoxic proteins can damage or even kill neurons by a number of mechanisms including changing the outer membrane of the nerve cell resulting in cell death or increasing reactive oxygen inside the nerve cell which also leads to cell death. It is probable that the neuronal sprouts, that have served so well for so long, are more fragile and may be the first target of proinflammatory cytokines in the central nervous system.

A very important fact is that nerve death only occurs in an activated immune system. The next question is "Do people with PPS have an activated immune system?" The answer is YES! There have been a number of research papers indicating that polio survivors with PPS symptoms have an activated immune system while polio survivors who do not report PPS symptoms do not have an activated immune system [1].

A very recent research paper [2] looked at cytokines in people with PPS, polio survivors without PPS, people with multiple sclerosis (MS), a well known inflammatory neurological disease, and people who had no neurological problems. They found that people with PPS and MS have proinflammatory cytokines in their central nervous system while polio survivors who do not have PPS and people without neurological problems do NOT have proinflammatory cytokines in their central nervous system.

What might cause the presence of these proinflammatory cytokines in people with PPS? One hypothesis is the presence of very low levels of polio virus RNA hiding in nerve cells. This polio virus RNA is not capable of infecting you or other people, but is capable of triggering the production of proinflammatory cytokines and with that, an underlying state of chronic immune system activation.

Other researchers have demonstrated a clear connection between the presence of proinflammatory cytokines and central fatigue [3]. Psychological stress – the kind that doesn't involve overdoing physically – is perceived in the brain and the brain produces proinflammatory cytokines. This can cause profound fatigue, inability to concentrate and other symptoms [4].

Remember that 1000 piece jigsaw puzzle we have spread out on the table? We are now able to put together some of the same coloured pieces to make small pictures that are part of the larger picture. In the same way, we are piecing together what happens when a person with PPS experiences physical or psychological stress. We start to see small pictures and we can just begin to discern the larger picture coming together.

We are coming to the place where it may be possible to treat PPS symptoms using anti-inflammatory medications. A very exciting trial, using intravenous immunoglobulin treatment, is currently underway in Sweden. Preliminary trials of this treatment in people with PPS have yielded dramatic improvements in fatigue and muscle strength! [5,6]

Other treatments to reduce PPS symptoms may be based upon traditional anti-inflammatory medicines such as aspirin, ibuprofen, indomethacin and others.

All treatments would have to be done under the supervision of your doctor, but in the meantime, there are some things you can do that are known to minimize inflammation in the body – and with that you might have a reduction of PPS symptoms.

· Meditation. You might try meditation. Yes it works...if you do it consistently.

· Exercise. Appropriate exercise, under the guidance of a knowledgeable physiotherapist, will definitely lower inflammatory cytokine levels.

· Pacing. Pace yourself and don't overdo. This is easier said than done but if you understand that seriously overusing muscles will start the proinflammatory cascade of events and with that bring on or intensify PPS symptoms, perhaps you will be able to justify resting before you go too far.

· Weight loss. Adipose tissue – commonly known as fat – is also a producer of inflammatory cytokines. If you needed a good reason to lose weight, here it is.

Finally there are a few things you can try. Drinking green tea encourages weight loss and it has neuroprotective qualities. There are also reports that undenatured whey protein may be beneficial. These things are probably not as effective as direct medication to lower proinflammatory cytokine levels, but as we incorporate them into everyday life, they will bring positive benefits.

And let's keep working on that jigsaw puzzle!

References:

1. Dalakas, Pro-inflammatory cytokines and motor neuron dysfunction: is there a connection in post-polio syndrome? J Neurolog Sci. 205:5-8, 2002

2. Gonzalez et al. Prior poliomyelitis-IvIg treatment reduces proinflammatory cytokine production. J Neuroimmunol. 150:139-144, 2004.

3. Patarca, R. Cytokines and chronic fatigue syndrome. Ann NY Acad Sci. 933:185-200, 2001.

4. Black, PH. Stress and the inflammatory response: a review of neurogenic inflammation. Brain, Behavior and Immunity 16:622-653, 2002.

5. Farbu et al. Intravenous immunoglobulin in postpolio syndrome. Tidsskr Nor Laegeforen.124:2357-2358, 2004.

6. Gonzalez et al. study in progress.

Information about Dr. Marcia Falconer:

Now retired, Dr. Falconer led a laboratory doing research in virology and molecular biology at The Centre for Food and Animal Research, Agriculture Canada Ottawa, Ontario, from 1993 to 2000.

Educational background:

12 Eclipse Trail / Ormond Beach, FL 32174 / 386 676-2435

MARCH / APRIL 2006

WE WISH ALL OUR FRIENDS

A FOUR-LEAF CLOVER ST. PATRICK’S DAY

A MOST JOYFUL EASTER

-and-

A SESSA (SWEET) PASSOVER