| Florida East Coast Post-Polio Support Group Vol. 13 #5 |
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| E-Mail: bgold@iag.net - Web Site: http://home.iag.net/~bgold |
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MEETING NOTICE
our members, a pharmacist with Walgreens
Drug Stores,
who will tell us all about Medicare Plan D and how
Walgreens helps you
decide which plan is best for you.
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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
Dues
Some Things that Finally Make Sense
Are You a Reason, a Season or a Lifetime
Doctor’s Advice
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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.
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Reprinted from PPRG of S.E.
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…..
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Reprinted from The
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
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.
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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!!!
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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
~*~*~*~*~*~
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
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
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
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
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
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
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
For a list of
all of the available plans in
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Reprinted from PPRG of S.E.
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
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
FECPPSG Editor’s
Note:- Will attempt to contact Ed Miller to
see what else he has with respect to stem cell research.
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The following was
e-mailed to me by one of our
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
© Marcia Falconer,
PhD Reprint requests should be
addressed to: falconer.pps@sympatico.ca
____________________________________________
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
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:
·
Post-doctoral
fellow in molecular biology at
·
Ph.D. in
neuronal cell biology from
·
M.Sc. in cell biology from
·
B.Sc.
biology,
Selected published articles:
·
Co-author
with Professor Edward Bollenbach, “Late Functional Deterioration in Non
Paralytic Polio”, Am J Phys Med & Rehab, Jan/Feb 2000.
·
“Non
Paralytic Polio and PPS”, A
·
Other
articles awaiting publication.
Polio
Background:
Marcia was
quarantined with polio at age 7 (1949). She had leg and arm weakness followed
by complete recovery. Led an active life: swimming, ice-skating and cross
country skiing. PPS symptoms first noticed in 1985, with fatigue and leg
weakness becoming severe by 1996. PPS diagnosed in 1998.
FECPPSG Editor’s Note:- This article is in
the newsletter exactly as sent to us by Dr. Falconer – the only change
being that we justified the margins.
Many thanks Dr. Falconer.
************************************
The
following poem was sent to us via e-mail from one of our members.
Believing In Yourself
Standing for what
you believe in,
Regardless of the odds against you,
and the pressure that tears at your resistance,
... means courage.
Keeping
a smile on your face,
When inside you feel like dying,
For the sake of supporting others,
... means strength.
Stopping
at nothing,
And doing what's in your heart,
You know is right,
... means determination.
Doing
more than is expected,
To make another's life a little more bearable,
Without uttering a single complaint,
... means compassion.
Helping
a friend in need,
No matter the time or effort,
To the best of your ability,
... means loyalty.
Giving
more than you have,
And expecting nothing,
But nothing in return,
... means selflessness.
Holding
your head high,
And being the best you know you can be
When life seems to fall apart at your feet,
Facing each difficulty with the confidence
That
time will bring you better tomorrows,
And never giving up,
... means confidence.
~ by
Mary Ellen Joseph ~
************************************
So many of you told us how you enjoyed reading about Deby’s travels to Turkey, that we thought you might enjoy
another “travelogue” – this one from one of our Australian members, Dee Clancey…
Enjoy!!!
~*~*~*~*~*~
VISIT TO
I have had polio
and I use a wheelchair usually when outdoors, a wheelie walker around the
house, and have an electric scooter for longer distances. I am very lucky to be
able to move around most of the time unaided. Recently, I was talking with my
family about travelling. I have friends who are Thai
and I said that I would love to visit them at their home in
Due to his health problems my husband no longer likes to travel and so my
beautiful daughter (who is married and has three children of her own) said that
she would love to go with me. Not really thinking the trip through--- we bought
our tickets ,obtained our passports, and had our vaccinations. My doctor (who
had been to
How wrong was I? At the airport in
to an airline wheelchair – no problems. The flight was great. However when we
arrived in
the Thai military). So, he took us to his city flat where his
wife would meet us. Vanida arrived and offered for us
to have a shower which was wonderful after the 9 hour flight and the oppressive
heat.
We travelled two hours up to the
The fun part was getting off the train, as there was no platform. I had to sit
on the floor of the train – bump down onto the step of the train – then slide
down the embankment where everyone grabbed out for me – walk across loose large
pebbles to get to the car. Of course I had a bruised bottom.
Sonthi’s friend picked us up from the end of the train
line and drove us up to Hell Fire Pass. This hate-full place is very beautiful
and very quiet. Although I had to laugh, the disabled toilet could not be
accessed as there was a donation box outside the door. (This really brought a
new meaning to the term ‘spending a penny’).
Travelling so far wasn’t too bad. Although a bit
uncomfortable. We travelled
back to our friend’s home which is in the suburbs and it was not unlike my
daughter’s home in
We travelled from one end of
There is no Social Security in
the old people do? The replied that the families look after them and the old
people look after the homes and children.
Now I can’t really explain just how cheap things are in
Australian dollar equates to around 75 cents US the Thai Baht works out at
around 3 cents per Australian Dollar. There were times we had to buy ½ dozen
items to be able to pay. Now if I say that we hired a taxi for the day and it
cost us 800 Baht which is about $26.66
Australian for the whole day and he was waiting at every stop to help us and to
put our belongings into his boot. The driver was polite, funny and wanted us to
help him with his English which we did providing he helped us speak Thai. He
thought that was really funny.
The Thai people in general are gentle, intelligent, cooperative, helpful and
very caring. There were many times that someone saw that I was having a problem
and without asking there came a gentle hand to help. We mixed with the very
wealthy and the very poor. I did not feel in danger at any time. While we were
at a temple one day, the heat made my feet swell. I sat on banana leaves on the
ground under a tree and waited for the others to finish what they were doing.
An old lady, very gently and with a smile on her face, came to me and started
to massage my feet. When my friends came back she asked what was wrong with my
feet and when she was told she just held my hand compassionately and nodded. On
another occasion when I was waiting for my daughter, one of the ladies who
guards that area in the supermarket thought I had a problem. We did not
understand each other and we laughed when all was explained as Vanida translated for us. The next day she saw us again but
didn’t feel she could approach us. But I went to her and she actually started
to cry because she felt that she had embarrassed us the day before. I gave her
a cuddle and we ended up laughing again. The generosity of spirit of the Thai
people really made me feel very humble.
Dee Clancey
FECPPSG Editor’s Note:- Our sincere thanks to Dee Clancey
for her “travelogue” – makes me want to make the trip myself. I have
able-bodied friends who also went to
about, we will be more than pleased to
make it a part of our newsletter.
************************************
DUES FOR 2006:- Please take a look
at your mailing label - on it you’ll see the month and year we
received your 2005 dues, i.e., 01/2005 means it was received in January 2005,
so your 2006 dues was due in January 2006. If your mailing label has the year
first and then the month, i.e., 2005/01 it means that you indicated to us in
January 2005 that you wanted to receive the newsletter but paid no dues. That’s OK as we still believe that anyone who
wants information should receive it – but we do need you to return the tear
sheet with either the “Dues” box checked or the “Keep me on the Mailing List”
box checked.
Your dues covers the supplies we need to send out the
information packets to all inquiring about Post-Polio Syndrome, any other
correspondence we do, and postage for publicity and for the out-of-country (25)
newsletters that we send out. We’re
fortunate in that the “Free Matter for the Blind and Physically Handicapped”
status takes care of the postage for the over 450 newsletters sent out within
the United States. We network with
approximately 60 other support groups throughout the
**********
WHEN YOU MOVE:- PLEASE be sure to send us
your new address. Sometimes the
post-office will return the newsletter to us with a “forwarding period expired”
notice on the front with your new address but most of the time they are just
returned to us with “address unknown” on it.
SO, if you want to continue receiving the newsletter it is UP TO YOU to
make sure we have your new address.
FECPPSG EDITOR’S NOTE:-
For
those of you just reading our newsletters on our website, if you would like to
send in dues (or make a donation) it would be appreciated. Barbara
************************************
The following was e-mailed to me by Mary Atwood and it does
make sense to me….
Some
things that finally make sense!
”We all get heavier as we get older because there's a
lot more information in our heads!
So I'm not fat, I'm just really
intelligent and my head couldn’t hold any more so it started filling up the
rest of me!”
That's my story and I'm stickin' to it!!
FECPPSG Editor’s
Note:- I couldn’t agree more!!!!
************************************
Here is
a beautiful e-mail item sent to me by many e-mail buddies over the past few
years. Thanks to all of you…..
ARE YOU A REASON,
A SEASON, OR A LIFETIME?
Pay attention to what you read. People come into your life for a reason, a season or a lifetime. When you figure out which one it is, you will know what to do for each person.
When someone is in your life for a REASON. . . It is usually to meet a need you have expressed. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally, or spiritually. They may seem like a godsend, and they are! They are there for the reason you need them to be. Then, without any wrongdoing on your part, or at an inconvenient time, this person will say or do something to bring the relationship to an end. Sometimes they die. Sometimes they walk away. Sometimes they act up and force you to take a stand. What we must realize is that our need has been met, our desire fulfilled, their work is done. The prayer you sent up has been answered. And now it is time to move on.
Then people come into your life for
a SEASON. Because your turn has come to share, grow, or learn. They bring
you an experience of peace, or make you laugh. They may teach you
something you have never done. They usually give you an unbelievable amount of
joy. Believe it! It is real! But, only for a season.
LIFETIME relationships teach you lifetime lessons: things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person, and put what you have learned to use in all other relationships and areas of your life. It is said that love is blind but friendship is clairvoyant.
Thank you for being a part of my
life.
************************************
FECPPSG Editor’s Note:- This was e-mailed to me some time ago and for whatever
reason, it never got into a newsletter.
However, I think the doctor’s advice is very sound…. Let me know what you think???
Doctor's Advise!
I DON'T KNOW WHAT DOCTOR WROTE THIS, BUT I LIKE HIM!
HEALTH QUESTION and
ANSWER SESSION
Q: I've heard that cardiovascular exercise can prolong life; is
this true?
A: Your heart is only good for so many beats, and that's it... Don't waste
them on exercise. Everything wears out eventually. Speeding up your heart
will not make you live longer; that's like saying you can extend the life
of your car by driving it faster. Want to live longer? Take
a nap.
Q: Should I cut down on meat and eat more fruits and vegetables?
A: You must grasp logistical efficiencies. What does a cow eat? Hay and
corn. And what are these? Vegetables. So a steak is nothing more than an
efficient mechanism of delivering vegetables to your system. Need grain?
Eat chicken. Beef is also a good source of field grass (green leafy
vegetable). And a pork chop can give you 100% of your recommended daily
allowance of vegetable products.
Q:
Should I reduce my alcohol intake?
A: No, not at all. Wine is made from fruit. Brandy is distilled wine, that
means they take the water out of the fruity bit so you get even more of
the goodness that way. Beer is also made out of grain. Bottoms up!
Q: How can I calculate my body/fat ratio?
A: Well, if you have a body and you have fat, your ratio is one to one. If you
have two bodies, your ratio is two to one, etc.
Q: What are some of the advantages of participating in a regular exercise
program?
A: Can't think of a single one, sorry. My philosophy is: No Pain... Good!
Q: Aren't fried foods bad for you?
A: YOU'RE NOT LISTENING!!! Foods are fried these days in vegetable oil.
In fact, they're permeated in it. How could getting more vegetables be
bad for you?
Q: Will sit-ups help prevent me from getting a little soft
around the middle?
A: Definitely not! When you exercise a muscle, it gets bigger. You should
only be doing sit-ups if you want a bigger stomach.
Q: Is chocolate bad for me?
A: Are you crazy? HELLO. Cocoa beans! Another vegetable!!! It's the best
feel-good food around!
Q: Is swimming good for your figure?
A: If swimming is good for your figure, explain whales to me.
Q: Is getting in-shape important for my lifestyle?
A: Hey! 'Round' is a shape!
Well, I hope this has cleared up any misconceptions you may have had about food
and diets.
And remember:
"Life should
NOT be a journey to the grave with the intention of arriving safely in an
attractive and well preserved body, but rather to skid in sideways
– Chardonnay in one hand – chocolate in the other – body thoroughly used up, totally worn
out and screaming “Whoa – what a
ride.”
************************************
One of our new members, Kathy Papson, living in
************************************
Reprinted from Polio Messenger, Polio Outreach of
Unveils Definitive
Stamps
Great News! Two polio related stamps are about to be
unveiled. One honors Dr. Albert Sabin and the other honors Dr. Jonas Salk. It is gratifying to know that polio and the
successful effort to develop a polio vaccine are being acknowledged.
These
doctors were incredibly dedicated to fighting polio and deserve this high form
of recognition. Artist Mark Summers
created the portrait on the stamp referencing a photograph of Dr. Sabin taken in 1982 at the Medical University of South
Carolina. The Distinguished Americans
series honors Dr. Jonas Salk (1914-1995), who was awarded the Presidential
Medal of Freedom in 1977 for developing the first safe and effective vaccine
against paralytic poliomyelitis.
Periodic outbreaks of this worldwide viral disease – also called
infantile paralysis or simply “polio” – paralyzed or killed thousands of people
annually in the
Be
sure to run or wheel out soon to get an ample supply of these postage stamps!!
************************************
Don’t forget the meeting this month
is the fourth Sunday – March 26th.
Looking forward to seeing many of you at the Red Lobster.
Barbara
************************************
FLORIDA EAST COAST POST-POLIO SUPPORT
GROUP
12 ECLIPSE TRAIL
386
676-2435 e-mail:-
bgold@iag.net
Note
Change of Meeting Week…..
DATE:
TIME:
PLACE: Red Lobster Restaurant
Right off I-95 – Exit 261–
(head EAST for about 1/4 mile)
PROGRAM:- -- Speaker:- Glen Morin, husband of one of our
members, a pharmacist with Walgreens
Drug Stores,
who will tell us all about Medicare
Plan D.
For further information call:- Barbara
386-676-2435
======================================================
2006 DUES/MAILING LIST
____ Dues Enclosed ____ Keep me on mailing list
If sending dues, please make Check
($5.00) Payable to and Mail to:-
FLORIDA EAST
COAST POST-POLIO SUPPORT
GROUP
12
Eclipse Trail,
NAME:-
__________________________________________________________
ADDRESS:-
_______________________________________________________
E-MAIL
ADDRESS:-__________________________ FAX #:- _______________
TELEPHONE NO:- Home
_______________________ Office ________________
Date of
Birth:-_________________ Wedding Anniversary:- ________________
Name and Date of Birth of
Spouse:-_____________________________________
03/2006
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
FLORIDA EAST COAST POST-POLIO
SUPPORT GROUP
12
Eclipse Trail /
386-676-2435 / e-mail
address: bgold@iag.net
Note
Change of Meeting Week…
DATE:
TIME:
PLACE: Red Lobster Restaurant
Right
off I-95 – Exit 261–
(head EAST for about 1/4 mile)
PROGRAM:- Guest Speaker:- --
Speaker:- Glen Morin, husband of one of
our members, a pharmacist with Walgreens
Drug Stores,
who will tell us all about Medicare
Plan D.
Cost of the Luncheon is
$10.00 all inclusive. As usual we will have a choice of several
different menu items.
Please send in your reservation tear sheet and check
no
later than
Any questions call Barbara at 386-676-2435.
==============================================================
R E S E R V A T I O N F O R M
Name:- _______________________________
Phone No.:- _________________
Number of People Coming:- _________ Number in Wheelchair(s):- ___________
Amount of Check Enclosed:- ________________ @ $10.00 per person
Make check payable to and mail same to:
FLORIDA EAST COAST POST-POLIO SUPPORT GROUP
12
Eclipse Trail --
03/2006