CONTENTS
From
Barbara
The Meaning of
Disease in the Course of Life
Physical
Therapy
Growing
Old
Health Smart –
Caffeine Culture
Align Your
Mind
Slow Down, Read
This,
Multi-Tasker
Polio
Particles
Medicaid
Assistance with Nursing Home Expenses
PPS
Questionnaire Answers
Wartime
President – Franklin D. Roosevelt
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FROM
BARBARA
Nothing really to report
– did nothing interesting the past two months. Flew to
***************************************************
Reprinted from Polio
From Henry’s
Desk:
The Meaning of Disease in the Course of
Life
Have you ever wondered who was the
greatest or most admired person that you have heard speak in your lifetime; a
person that you were a living witness of their presence and their words? In answering this question I feel some
comfort in having had the opportunity and experience of hearing two great
physicians during my life. Of course persons that may seem “great” to me may not
be an opinion shared by others.
A little over two decades ago I had
the privilege of hearing an address by Dr. Albert Sabin at the Saint Mary’s Hospital in
In the spring of 1965 while I was a
third year medical student at the Medical College of Virginia I had the
opportunity to listen to an address by Dr. Paul Tournier in the George Ben Johnston auditorium. This
auditorium was more like a surgical amphitheater, but could seat several hundred
people. The room was crowded that day.
Tournier was born
On that day this writer was
twenty-five years old and eager to learn. I remember more about his delivery
than his actual words. He talked mostly about his book, The Meaning of Persons. Dr. Tournier
presented his remarks in French and an older distinguished looking lady
translated his comments into English. Their alternating back and forth delivery
was both spontaneous and poetic. I left that day feeling greatly uplifted and
inspired.
Dr. Tournier wrote many books on the human condition and
especially the human condition in relationship to disease, with each other and
to God. One of his books that I
treasure is entitled A Doctor’s
Casebook. As survivors of polio
and Post-Polio Syndrome we know and have experienced a lot about living with a
disease that started at some specific point in our lives and has not finished
with us yet. I will end this missive with a quotation from Dr. Tournier’s casebook.
“The insecurity of a man’s life will
be underlined especially by disease. “Disease is a sign of the death which is to
come,” writes Professor Courvoisier. “Every disease has in it the germ of
death.” Doctors at any rate will
not contradict him! Although in
health men repress as far as they can the terror of death, it reappears with the
slightest disease. When, in our
consulting rooms, they ask us in as detached a tone of voice as they can manage:
“Well, Doctor, is it serious?” We
know well enough what they mean. They mean: “Is there any risk of my dying from
it?”
Mlle. S. Fouche of
The prolongation
of life and re-establishment of health, for which medicine labors with all its
strength, are seen to be a blessing from the merciful God, a respite, a stay of
execution. We may ask why God grants us this
respite. It can only be that He
wants us to use it to come nearer to Him, laying hold through faith on His
promises of eternal life.
True courage – the courage which has
its roots in faith – is that which listens to what God is saying to us through
disease and the threat of death. If this is our attitude sickness and death will
take on meaning for us, they will have something to teach us, something to bring
to us and they will help to make us revive our scale of
values.
Every sickness is a crisis of life.
Every sick person who calls for our help is one who has suddenly become aware of
his fragility. He is at the same
time discovering the fragility of everything that once filled his life: work, money, affections, instincts and
pleasures. If he has regarded them
as duties and blessings sent by God, the sudden stoppage caused by the sickness
will be easier to bear: he still has God and will wait upon new blessings from
Him in the spiritual retreat that sickness can become. But if, on the other
hand, he has made them his Gods, if he has thrown himself frantically into them
in order to distract and dupe himself, then suddenly and tragically he is faced
with the true problems of life and of his own life. Sickness sets him face to face with
God.”
Reference:
Tournier, Paul; A Doctor’s Casebook, Good News
Publishers,
***************************************************
Reprinted from Triad Post Polio
Spt Grp, The Seagull, February 2007.
Our thanks to Sharon Bowden for e-mailing article to me
– again saving typing energy.
PHYSICAL THERAPY
By Susan I. Fish, MAPT
During recent years, I have had the opportunity to meet and work with
patients experiencing the late effects of polio. Many times I have detected some
frustration and anger regarding my professional’s lack of experience in treating
Post-Polio patients. I write this
brief article now for two reasons:
◄ To explain and help you understand
this lack of knowledge on the part of many of my
colleagues.
◄ To provide some guidelines regarding
Do’s and Don’ts when seeking physical therapy.
Most Physical Therapists (PT’s)
(Physiotherapists in
Although, there may be reasons for a
lack of knowledge, a responsible professional should NOT treat any condition
that he or she is not confident and knowledgeable in treating. You may be able to direct a PT to
appropriate resources. Please see
the resources at the end of this article and I would be happy to help
also.
Reasons for seeking physical therapy
will vary. You may be referred to a PT to help you with your Post-Polio
Syndrome. You may be referred for rehabilitation following corrective surgery
for a polio related condition. You may also be referred for a condition not
necessarily related to polio at all such as arthritis, bursitis, tendonitis,
fractures, osteo-porosis, low back pain, stiff neck,
etc, etc. Your physical therapist is well trained to treat these other
conditions. However, your post polio status should be
taken into consideration when designing a program. Here is some
advice.
◄ Do's and Don'ts to keep in mind when
going for physical therapy:
◄ Do trust
yourself and the knowledge you have gained over the years
about your body.
◄ Do be
willing to alter your lifestyle.
◄ Do avoid
fatigue.
◄ Do get
enough rest.
◄ Do pace
your activities rather than discontinuing them.
◄ Do
conserve energy. It may make more sense to spread your activities out, allowing
for rest periods, rather than eliminating interests and
activities.
◄ Do recognize that your body is
aging and some physical changes will occur which are not related to post-polio.
There IS a normal aging process even though post-polio may be a part of
it.
◄ Do
respect your feelings. This may be a difficult adjustment time for you; seeking
emotional as well as physical guidance may be a wise thing to
consider.
◄ Don't
follow advice regarding physical exercise if you become fatigued while doing
it.
◄ Don't
become short of breath with exercise.
◄ Don't do
more than your body feels comfortable doing.
◄ Don't
cause pain with activity or exercise.
◄ Don't
gain weight.
◄ Don't
reject using aids and assisting devices without giving them serious thought.
(They are meant to conserve energy and preserve anatomical structures, i.e.
joints, muscles, tendons, cartilage and ligaments.) Most are delighted and
surprised by the increased endurance and energy they have with the use of canes,
wheelchairs, motorized scooters or the many other easily found assisting
devices.
***************************************************
This has been e-mailed
to me so many times over the last few years that I felt it was time it went into
the newsletter. A
quick “Thank you” to Elizabeth Frascella for sending
it this time.
GROWING
OLD
The
other day a young person asked me how I felt about being old. I was taken aback,
for I do not think of myself as old. Upon seeing my reaction, she was
immediately embarrassed, but I explained that it was an interesting question,
and I would ponder it, and let her know.
Old Age, I decided, is a gift.
I
am now, probably for the first time in my life, the person I have always wanted
to be. Oh, not my body! I sometime despair over my body,
the wrinkles, the baggy eyes, and the sagging butt. And often I am
taken aback by that old person that lives in my mirror (who looks like my
mother!), but I don't agonize over those things for long.
I
would never trade my amazing friends, my wonderful life, my loving family for less gray hair or a flatter belly.
As I've aged, I've become more kind to myself,
and less critical of myself. I've become my own
friend.
I
don't chide myself for eating that extra cookie, or for not making my bed, or
for buying that silly cement gecko that I didn't need, but looks so avante garde on my patio. I
am entitled to a treat, to be messy, to be
extravagant.
I
have seen too many dear friends leave this world too soon; before they under-stood the great freedom that comes with aging.
Whose
business is it if I choose to read or play on the computer until
I
will dance with myself to those wonderful tunes of the 40 &50's, and if I,
at the same time, wish to weep over a lost love ... I will.
I
will walk the beach in a swim suit that is stretched over a bulging body, and
will dive into the waves with abandon if I choose to, despite the pitying
glances from the jet set.
They,
too, will get old. I know I am sometimes forgetful. But there again, some
of life is just as well forgotten. And I eventually remember the important
things.
Sure,
over the years my heart has been broken. How can your heart not
break when you lose a loved one, or when a child suffers, or even when
somebody's beloved pet gets hit by a car? But broken hearts are what give
us strength and understanding and compassion. A heart never broken is pristine
and sterile and will never know the joy of being
imperfect.
I
am so blessed to have lived long enough to have my hair turning gray, and to
have my youthful laughs be forever etched into deep grooves on my face. So
many have never laughed, and so many have died before their hair could turn
silver.
As
you get older, it is easier to be positive. You care less about what other
people think. I don't question myself
anymore. I've even earned the right to be wrong.
So,
to answer your question, I like being old. It has set me free. I like the
person I have become. I am not going to live forever, but while I am still
here, I will not waste time lamenting what could have been, or worrying about
what will be. And I shall eat dessert every single day. (If I feel like
it!!)
***************************************************
Reprinted from
HealthSmart
Caffeine Culture
By Dr. Tedd Mitchell
Not long ago I called my brother, and his wife said he was down at “that
crack house” (her name for the local coffee establishment he frequents). She was speaking in jest, but it’s worth
examining: Can we actually become
addicted to caffeine like we can to other drugs?
According to research from
But first, what do we know about caffeine? Medical literature is filled with
contradictory information regarding its effect on health. Some studies suggest that large amounts
of coffee may reduce the risk of conditions such as gall bladder disease. Others show it to have a detrimental
effect on things like sleep, blood pressure and bone
density.
Suffice it to say, there is no clear-cut answer on what effects caffeine
may have on the body’s health. For
now, let’s look at some of the evidence on caffeine’s addictive
potential.
We know that caffeine is a stimulant. Stimulants elevate heart rate and blood
pressure, can make us more alert and may even improve performance in certain
sports. In fact,
the International Olympic Committee, in its doping regulations, in the past
included caffeine on its list of restricted agents. What’s more, like other stimulants,
caffeine ma cause a physiological
dependency.
That’s what the Johns Hopkins researchers suggested with their
study.
In their report, the researchers found five main withdrawal
symptoms: headaches (the most
common), fatigue, changes in mood (including depression), inability to concentrate and even flu-like symptoms. Many people had withdrawal symptoms (50%
had headaches), but for most, the symptoms weren’t overwhelming. However, one in eight (13%) were
substantially impaired, experiencing headaches and/or other withdrawal symptoms
severe enough to keep them from their normal routines.
Most withdrawal symptoms started within 24 hours of the last serving of
caffeine. The symptoms peaked
within the first two days and then trailed off, sometimes lingering for more
than a week. A daily dose of
caffeine did matter (i.e., more caffeine, more withdrawal), but some folks had
symptoms when with-drawing from even small amounts.
Withdrawal headaches from caffeine make it difficult for people to
quit. It’s not fun to suffer when
you know that a jolt of caffeine will fix the problem. Nonetheless, studies like this one
reinforce the age-old adage that moderation is key.
Aim to find that happy medium when consuming any product containing
caffeine. A general rule of thumb
is to limit caffeinated beverages to no more than two servings daily. Still, an 8-ounce cup of coffee may
contain twice as much caffeine as a 12-ounce cola, so
two cups of coffee would have much more caffeine than two sodas. In spite of this discrepancy, I think
it’s a worthwhile rule to follow.
For most folks, applying this limit to their routines will keep them from
the headaches and hung-over feeling that can come with caffeinated
drinks.
5 Caffeine Withdrawal
Symptoms
·
Headaches
·
Fatigue
·
Mood changes
·
Inability to
concentrate
·
Flu-like
symptoms
Tedd Mitchell, M.D., president and medical director of
FECPPSG Editor’s Note:-
I, myself,
am not a coffee or soda drinker, but know many (including my family members) who
drink more than the recommended two sodas a day – so, please, just be careful
and watch your intake. Our health,
just by having PPS, is getting many of us with symptoms like fatigue – we don’t
need any more problems.
***************************************************
This came to me through
ALIGN YOUR MIND....
THE KEYS TO SUCCESS ARE IN YOUR
HANDS.
Your life will always be what you
make of it.
Your thoughts and actions will lead
you to success or failure.
Always accept responsibility for
your actions.
Always set a higher standard for
yourself. No one is going to do it for you.
Only you can make it happen.
***************************************************
Reprinted from
SLOW DOWN, READ
THIS, MULTI-TASKERS
Think you can juggle calls, e-mail,
instant messages and computer work to get more done in a time-starved
world?
LIMIT IT: Several research reports, both recently
published and not yet published, provide evidence of the limits of
multi-tasking. The findings suggest
that many people would be wise to curb their multi-tasking
behavior.
BASIC ADVICE: Check e-mail messages once an hour. Listen to soothing background music
while studying. Don’t drive and
talk on a cell phone. In short,
manage the technology.
WHY THE CONCERN: The human brain is a cognitive
powerhouse in many ways. “But a
core limitation is an inability to concentrate on two things at once,” said Rene
Marois, a neuroscientist at Vanderbilt University,
Marois and other researchers found that responses in a
study were delayed by up to a second when the participants were given two tasks
at the same time. In many daily
tasks, a lost second is unimportant.
But one implication of the research is that talking on a cell phone while
driving a car is dangerous. A
one-second delay in response time at 60 miles an hour could be fatal, Marois noted.
-
New York Times
-
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The following short articles were
sent to us by Dr. Mary Westbrook of
POLIO
PARTICLES
Immunoglobulin used to treat
PPS.
As Dr. Marcia Falconer has explained
in her recent seminar presentations to the Network, there is evidence that an
inflammatory process may be the major cause of PPS. Thus anti-inflammatory medications
should help relieve PPS symptoms and several recent research studies have shown
this to be so. Dr. H. Gonzalez and
others reported the results of a randomized controlled trial in the journal, Lancet Neurology, June 2006. In this research patients in four
clinics were randomly assigned infusion
of either 90g in total of intravenous immunoglobulin or placebo during 3
consecutive days, repeated after 3 months. There was some improvement in muscle
strength in the treatment group as well as in activity levels and vitality. There was no significant change in pain
experienced. The Summer 2006 issue
of the Post-Polio Health International
Newsletter (
Enticing nerve cells to paralysed muscles
The Salk Institute for Biological
Studies in California has issued a press news (15/6/06) in which Dr. Samuel
Pfaff, a leading researcher there, describes how his team has ‘identified a molecule that guides a
specific subgroup of neurons to connect to the muscles that line our spine and
neck …piece by piece, we are uncovering general principals that ensure that the
developing nerve system establishes proper neuronal connections.’ Understanding how axons find their
destinations may help restore movement in people following spinal cord injury,
or those with motor neuron diseases such as Lou Gehrig’s disease [ALS or motor neurone disease],
spinal muscle atrophy and post-polio syndrome. There is a lot more research to be done
before this research is applied to people but they are starting to treat
mice.
No polio vaccination, no
travel
As a result of the alarming rise in
polio cases in India WHO is considering
asking the Indian government to issue an order whereby Indians traveling abroad
will have to ensure that their children traveling with them are vaccinated
against polio. The order, if
implemented, would mean that children below five years of age will have to get
certificates from a doctor (Indian news website rediff.com,
Call for development of drugs to
treat polio
When we contracted polio there were
no drugs with which to treat it.
With the development of the Salk and Sabin
vaccines, research into possible treatments for the polio infection virtually
ceased. As discussed in previous Particles the fear remains that there
may be future outbreaks of polio despite the eradication campaign. Now a committee of the US National
Research Council has recommended that antiviral medications to treat people with
polio be developed (Associated Press
Goat with
polio
Our neighbour’s goat was just diagnosed with polio. We thought this disease had been
eradicated. Is polio in goats
contagious to humans? How dangerous
is this? This query was sent to Pete Keesling, a Californian veterinarian, who writes a bi-weekly
advice column in the Gilroy Dispatch
(
Feelings of déjà
vu
The talking point at the wedding was
not about the bride’s beauty. And
she was impossibly or extremely beautiful.
The dominate comment was about the bridegroom’s ‘stupidity’. He was tall and had an athlete’s
stature, not the one enhanced by steroids.
But not even steroids could do anything for the bride’s left leg. It was thin and shorter than the right
one. Polio had made her almost a
cripple. Many people commented that
the man was foolish to have chosen such an obviously deformed woman as his
bride. Someone claimed it was not
love but a love potion that led the man to propose to the lady. And there was a time during the ceremony
when the bride had almost fallen on her face… dancing was apparently new to
her. She may not have had many
dates before her wedding. Not many
young men care to take a polio victim dancing. This was the beginning of the
editorial in the Nigerian Tribune
(
FECPPSG Editor’s Note:-
Unfortunately, it’s not only
Australian parents but many parents throughout the world, including some within
the
***************************************************
Reprinted from The Council On Aging of Volusia County, Inc., The Counsel, First Quarter
2007
MEDICAID ASSISTANCE
WITH NURSING
HOME EXPENSES
Randal L. Schecter, Elder Law Attorney
When the Deficit Reduction Act (DRA) was signed into law on
The DRA extended the “look back” period from three years to five
years. This means that an
applicant’s financial records can be reviewed for the five year period
immediately prior to the application date.
This is to find any improper transfers of assets by the applicant or the
spouse. An improper transfer is any
transfer, gift, or other giving away of assets for which the “giver” does not
receive fair compensation in return.
For example, the applicant buying a $500 television for him is not an
improper transfer but buying it for his daughter is an improper
transfer.
Improper transfers may be more than just personal property of
course. An improper transfer of any
type of asset can trigger a penalty.
This applies to cash, CD’s, stocks, bonds, investment accounts, life
insurance policies, annuities, real estate, and more. The reason for the transfer doesn’t
really matter – just the fact a transfer was made is enough to cause a
penalty. There are no exceptions
for helping a family member who needs medical care, college tuition, a down
payment for a home, or for donating to a charity, church or
temple.
Let’s say Mr. Smith helped out his granddaughter with college tuition two
years ago by paying $5,000 to the university. At the time Mr. Smith did this good deed
he was healthy and applying for nursing home Medicaid was the furthest thing
from his mind. Now two years later
Mr. Smith has had a stroke and will need a nursing home for the rest of his
life. Even if he otherwise meets
all the eligibility requirements for Medicaid he will not be eligible
immediately because of the gift of tuition two years earlier. Mr. Smith is penalized for something he
did two years ago when Medicaid was not even a
consideration!
The penalty is a time penalty that punishes the giver of the asset by not
allowing that person to qualify for Medicaid for a certain number of
months. Under the old law the
penalty period ran from the date of the improper transfer. Under the new law, the penalty periods
runs when the application is filed.
So now that Mr. Smith is in the nursing home and needs help paying the
bill, he will have to wait for the penalty period to expire and in the meantime
figure out a way to pay for his care.
Keep in mind that the greater the value of the improperly transferred
asset, the longer the penalty period.
The new law penalizes people who made innocent transfers or gifts in the
past, not knowing they would need a nursing home later. In other cases people “panic” and make
improper transfers or gifts when suddenly faced with the expense of nursing home
care. However, it is possible under
the Medicaid rules to correct improper transfers and avoid a penalty period so
don’t feel like it’s hopeless if this has happened to you or a family
member.
The DRA made significant changes to the Medicaid “look back” period and
to the way penalty periods are calculated.
These changes have made it more difficult to qualify for nursing home
financial assistance. Medicaid
planning is complex and the look back period and transfer penalties are just
part of the eligibility process.
Because of these changes it is more important than ever to seek the
advice of a qualified, experienced Elder Law attorney to help deal with these
important issues.
FECPPSG Editor’s Note:- Many of us don’t even want to think
about possibly needing Medicaid, BUT – it is important that we look into it as,
you never know, you may very well need to apply at some time in the future,
especially those of us, like me, who were not able to get Long Term Care
insurance because we had a pre-existing condition (polio). I know that I will be calling an Elder
Law attorney at some point in the near (not distant) future.
***************************************************
We were given permission to reprint
the below “article” by the
PPS QUESTIONNAIRE
ANSWERS
The following survey was taken by
the
How old are
you?
▪ The nine respondents were between 54
and 77 with an average age of 64.4 years.
I am 72 years
young.
What was your previous occupation?
▪ Nurse practitioner
§
Postal Service
▪ Physical Education
Teacher/Coach. For 31
years.
§
RN Physician
Extender
▪ Typist, helping at St. Raphael’s
(former)
▪ I worked for 17 years at the Cold
Spring Granite Co. in the monumental dept. and then became a stay-at-home
mother. From home I did some lettering and design work for granite companies for
many years.
▪ Secretary/Paraprofessional in
science Dept at Apollo HS
§
Kindergarten
teacher
▪ My previous occupation was a
machinist. I stood on concrete for 42 years.
I was a paralegal for 50
years.
How long have you known that you
have post polio syndrome?
▪ 13
▪ 9 years or
more.
▪ Since 1998. Eight
years.
▪ 18 years
▪ Maybe 32 years---didn’t know it to
begin with, only later realizing what the “syndrome”
meant
▪ Post-polio or old age---I do not know,
nor do I worry about finding out. I wouldn’t do anything different so do not
care to spend the time and money pursuing it. By coming to these meetings I’ve
learned about taking care of myself and it works for me.
▪ About 12 years
▪ 18 years
▪ My condition started to become evident
in Nov. of 2005. I was hospitalized for arterial fibrillation at the
time.
I started having problems in the
early 1980’s.
What would you like the public to
know about post polio?
▪ That others usually can’t see the
fatigue, muscle weakness, pain or cold intolerance, but that often the symptoms
are there and can disable us enough to not be able to work.
▪ It's real.
▪ I would like the public
to understand that Post Polio is real. That, no matter what our physical
appearance is like. We all have very real symptoms that alter our lifestyle
significantly. That our disability is not phony. None
of us are faking this disease.
▪ I would like the public and medical
communities to be more aware of what post polio is about. How it impacts our
lives and what we have to do and not do to improve the quality of our
lives.
▪Tire easily.
▪ It is very real and devastating to
those who experience post polio.
▪ For the public to understand more about
post polio syndrome, even if we look OK. More articles in papers and magazines
about it.
▪ That others can’t see our fatigue,
weakness, or pain and that that is why we can’t work.
▪ I would like them to understand more
about it.
That the professional community
should take us seriously and not tell us “you’re getting older – what do you
expect”.
What hurts the most psychologically
or emotionally about having post polio?
▪ Watching my husband, children and
grandchildren from afar (or not be with them at all) as they share doing the
things I love to do: hiking, biking, skiing, etc.
▪ Not being able to do what I use to be
able to do.
▪ I enjoy hunting. I'm
very limited as to what I can do in the woods.
▪ Being able to share quality
time with my grandsons is important.
▪ Since I don’t have major changes, it
doesn’t affect me very much.
▪ Both
▪ Not being able to do what I use to
do.
▪ I am most frustrated not being able
to do some things that I used to do.
▪ I am unable to climb a lot of stairs,
or walk more that ½ block, without resting.
Basically almost what all of the
above have stated. As a teenager
and young mother, living at the beach in
What frustrates you the most about
your post polio?
▪ Having to miss out on a lot of fun with
other people because it is just too exhausting to be or talk with people.
▪ Fighting fatigue and what is easy
for normal people to do, is work for me.
▪ I enjoy hunting. I'm
very limited as to what I can do in the woods. Being able to share quality time
with my grandsons is important.
▪ Having to always set priorities. Not being
able to go out for walks and engage in many other activities. Not being able to
work.
▪ Fatigue and pain
▪ Not able to do all that I would like to
do.
▪ Since I don’t have major changes, it
doesn’t affect me very much.
▪ That my Family and Friends think I can
keep on going, whether it is work or play. Getting tired and fatigued too easily
and also get stressed out very easy and I get a lot of
headaches.
▪ What’s easy for most people is hard for
me. I tire so easily. Not being able to do anything about
it.
This would be the same as my
response to the last question.
What special or adaptive equipment
do you use to participate in normal living?
▪ Electric WC, stroller, 2 ankle/foot
orthotics, a reacher device,
back rest, orthotic shoes, night splints, electric toothbrush, electric can
opener, cuisinart.
▪ As of today, I am using
nothing.
▪ I will be using a cane
within a year. Since, I live out of town a 4 wheeler is my main way of
getting around.
▪ I use bilateral braces and forearm
crutches. Also find the need to use a power chair and or rolling walker when
necessary. Special pillows and wrist supports.
§
None
▪ I’ve had to go to a larger brace and
use a cane most of the time. That brace is what threw me the most since it
really made me realize that this problem was only going to get worse, not ever
better. Ugly shoes are now a permanent fact of lie.
§
Sometimes brace for my
back.
▪ Occasionally use a cane if more than 5-6 blocks,
foot orthotics, orthotic
shoes.
▪I walk with a cane and sit whenever
I can.
I use a full leg brace, a cane, and
a scooter. Using the scooter more
and more – especially in the house which is something I had hoped I would never
have to do. I also use dinette
chair with wheels to “shuffle” around when I don’t want to bring the scooter
in.
To better explain our differences,
complete the statement below for up to 5 problems or difficulties you experience
due to your post polio
▪ During the winter months, I wear
long wool underwear, wool knee high socks, second pair of wool socks, thinsolite boots, wool sweater, wool scarf, hat, and long
down coat, and sometimes a heated lap blanket, to keep warm IN THE HOUSE (This
is with the room temperature of 70 degrees.)
▪ I nap for 20 minutes to 60 minutes
once or twice a day in order to be rested enough to do daily tasks. (That’s in addition to 9 hours of sleep
at night.)
▪ I practice sitting, lying down and
get-ting up, and standing daily in order that I don’t pull a muscle doing those
activities.
▪ I do stretch exercises at least once
a day to fight my tight muscles for “ownership” of a straight spine and full
range of motion (as much as possible) of my upper and lower
limbs.
▪ Grab bars. Not working past
▪ I'm not going to list the
5 problems. I will explain that the extreme fatigue I experience from very
little effort will explain a lot. Also, very severe cramping
in my legs. Multiple cramps all at the same
time. Will pass out from the pain.
I have altered my lifestyle. No stress and 8,000 I.U's of vit. E along with other
anti cramping meds allows me to be comfortable with limited activity. Most
any activity beyond walking is overdoing.
▪ I use pain medications, a nerve
stimulator, mouth splint at night, have ongoing physical therapy and pool
therapy. These are all used to help improve the quality of my life. Reducing
nerve and muscle pain as well as headaches are temporarily relieved as well as
helping to maintain strength in muscles and bones.
▪ I don’t know how to answer this
question. I don’t walk as much as I used to. Is it because of post polio, old
age, arthritis, or maybe even because my brace is heavier that I get tired
faster? I still keep busy and do get a lot done but in a more leisurely way. My
life changed when I had polio and from that time on, I’ve managed to have a good
life and that has not changed as I’ve gotten older. Other medical problems
curtailed some of my plans nearly as much as polio did.
▪ Try to take a couple of naps during the
day, to exercise what I can, eat right, and keep my weight down by walking what
I can do.
▪ I wear long polyester underwear, wool
sweater, wool scarf to keep warm in the house. I nap once or twice a day for
20-60 minutes. I do stretch exercises daily to keep my muscles from getting too
tight. I use pool therapy.
▪ A cane in order that I may putt
around better.
I guess I’m a little luckier than
others – I have virtually no pain from my post-polio difficulties (not to say I
don’t have an ache now and then) and I take absolutely no medications. My fatigue level is not what I would
like and I do lay down and take naps when
needed.
FECPPSG Editor’s Note:-
That’s it
for me.
***************************************************
Our thanks to
Larry Kohout, Newsletter Editor, of the The Post Polio Awareness & Support Society of MN, who
went above and beyond when we were unable to connect with Mr.
Grant. Larry called him directly and received
permission for us to reprint the following article.
Wartime President Franklin D.
Roosevelt
Made 'Tacit Agreement' With
Public About Disability
by R.Murry
Grant
Few pictures are known to exist of
Franklin D. Roosevelt in his wheelchair, and a small number of others show his
leg braces, or assistance of any kind.
Richard Harris was a director of
disabled student development at
“FDR: elected in spite of -- or
because of his disability?”
Stacy
Anderson, a University Record intern at the
“Harris’s presentation tackled the
issue using family stories from Nina Roosevelt Gibson,
“Roosevelt ‘is consistently ranked
as the 3rd or 4th best president we ever had in terms of leadership and within
this power position he couldn't stand on his own and he couldn't walk,’ Harris
said.”
He discussed the various ways
“There was self-discipline on the
part of the press and the photographers,” Harris said. “I believe that Franklin
Roosevelt made a tacit agreement with the American
public.”
Harris described the leadership role
Eleanor Roosevelt took after her husband’s paralysis in 1921, a rare move for a
first lady at that time. She became his “eyes and ears,” attending speeches and
conferences in place of
Pictures of
“Harris asked the audience whether
it would be possible for
The event was sponsored by the
Office of Services for Students with Disabilities and University
Housing.
President Roosevelt and Prime
Minister Winston Churchill met in person 9 times. The first took place in August
1941 off the coast of
Editor’s Note: I read this article
in Polio Postbox,the
newsletter of Polio Regina Incorporated. It is reprinted here by permission of
Murray Grant.
FECPPSG Editor’s Note:-
Although I never met FDR, he was my
childhood hero. I felt that if he
could have polio and still be elected President there was nothing that could
stand in my way.
***************************************************
After 14 years of
doing the newsletter without any photos or graphics, trying to see if we can
“upgrade” Barbara’s ability to do this. Will see what happens next issue.
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
FLORIDA EAST COAST POST-POLIO SUPPORT
GROUP
12 ECLIPSE TRAIL
386 676-2435
e-mail:- bgold@iag.net
RESERVATION
FORM
DATE:
TIME:
PLACE: Red Lobster Restaurant
Right off I-95 – Exit 261 –
(head EAST for about 1/4 mile)
TOPIC:
Where do
we go from here????
Please send in
your reservation tear sheet and check
no later than
Any questions call Barbara at 386-676-2435.
================================================================================================
RESERVATION
TEAR
SHEET
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 -
05/2007
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
DUES FOR 2007- Please take a look at your mailing
label - on it you’ll see the month and year we
received your 2006 dues, i.e., 01/2006 means it was received in January 2006, so
your 2007 dues was due in January 2007. If your mailing label has the year first
and then the month, i.e., 2006/01 it means that you indicated to us in January
2006 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.
=========================================================
2007
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:-_____________________________________
Support Group I belong to:-
____________________________________________
05/2007