NOTE FROM BARBARA
Well, looks like my Post-Polio problems are
finally putting a damper on my long-distance driving – that is driving from Ormond
Beach, FL
to Huntington, LI, NY.
I finally succumbed to the fact that reaching up to close the tailgate
of the minivan after taking my scooter in and out was getting too
difficult.
I purchased a Chrysler Town & Country
(2001) with complete remote access to side doors AND back tailgate. Funny thing is that there are various buttons
in the car which enables you to push the button to open the side doors and tail
gate, and also open your garage door.
The salesman thought he was impressing me with
these various handy items until I told him that with my dexterity and raising
the right arm difficulties, these “extras” were of little or no value to
me. Naturally, as my right leg has no
power, I needed to have a left-sided gas pedal installed. I also had to call
Electric Mobility in New Jersey,
for them to send me another trunk lift so that I could put their “Rascal” in
and out.
It’s truly a shame that the automobile
companies only reimburse you
for adaptive equipment when you purchase a new car NOT a second-hand one…… Oh, well –
The new minivan is great – not having to worry about whether my arm will
reach up to pull down the tailgate or if I’ll have to wait for someone to
assist me, is such a relief.
I’ve already driven my old minivan to my son’s
place in Huntington,
Long Island. I will now be able to fly up with the scooter
and have a vehicle there that can handle it.
Well, would you believe that on the flight home with Delta Airlines they
managed to damage the scooter – somehow they knocked off the little black dial
that allows you to go from 1 to 10 speed, then breaking the metal stem the
black dial sits on ¾’s of the way down. They also did something to the steering
column and the seat. I went to Customer
Service and they took a report of everything, told me what company they deal
with and I went home. The mobility
company sent a driver over the following day and he said he would order the
parts but would need to take the scooter with him and I would probably not get
it back for a week or two. Told him
“forget that – let me know when you have the part(s) and then come pick up the
scooter”, he agreed to that.
This does give me pause though as to – is this
going to happen every time I fly – maybe I’m better off purchasing another scooter
and just leaving it up on Long Island and using airport wheelchair service
whenever I fly. Will be looking into
this in the next couple of weeks and will let you know what happens.
It’s funny, my children were worried about my
doing the long-distance driving which, doesn’t bother me at all – what was (is)
giving me a problem is the getting in and out of the car to do the pit-stops
(gas, restrooms and food). When I tell people that I very
often drive straight through (from Ormond Beach to Huntington and the reverse),
they look at me like I’m nuts until I
tell them that getting out of the car to register at a motel, then getting back
into the car, going to the room, getting out again with my overnight bag (and
sometimes having to take the scooter out), and then reversing everything in the
morning is just using up too much energy.
I’d rather stop at a rest area when I start to feel a little tired, park
near the security car, make sure I’m locked in, close my eyes and rest for a
half-hour or so, and then I’m ready to go again. - I also enjoy driving by
myself as I can listen to whatever music or audio books I want to, and don’t
have to worry about pleasing anyone but myself.
(Aug 21, 2003)
****************************************
OUR SYMPATHIES
It is with great
sadness that we offer our sincerest condolences to the family and many,
many friends of Jenny
Danielson – President of the Triad Post-Polio Support Group in Greensboro, NC.
To all of us who knew Jenny, it is a huge loss.
We were blessed to be friends with her. During her
illness, she filled us with such thoughts of courage that we were all
certain G-d would grant her many more years to be with us. I guess
HE needed her more than we did.
We also offer our
sincerest condolences to the family and friends of Dr. Norman Minard. Norman was a member of
the Long Island PPSG I was involved in before moving to Florida. He remained a member of that group and
ours. He and his wife, Murielle, became
snowbirds and spent the winters in West Palm Beach joining the PPSG
down there. He will be sorely missed by
all.
****************************************
The following is taken from an e-mail by our
November speaker - Thomas Orthopedic
and Sports Physical Therapy.
~*~*~*~*~*~*~*~
By correcting your posture, you can:
1) Slim your waist by an inch or more, so you look up to 10 pounds
lighter.
2) Regain up to 2 inches of height.
3) Appear younger and more confident.
4) Increase grace and flexibility.
5) Minimize pain in the back, neck, and joints.
6) Reduce tension headaches.
7) Prevent numbness or tingling in the arms and hands.
8) Relieve digestive disorders and heart- burn.
9) Improve breathing by giving the lungs more room.
10) Promote better organ function by improving circulation.
****************************************
Reprinted from Colorado
Post-Polio Connections, Summer, 2003,
Make a Place for Your Illness
and Put It in Its Place
by Pauline Salvucci
Reprinted with permission. ©
2001 by Pauline Salvucci
Pauline Salvucci is a Professional Life
Coach. She is the author of numerous
articles on self-care and personal development, including the popular
“Self-Care Now!” booklets. Her web site
is http://www.
selfcareconnection.com.
”A place for everything,
and everything in its place.” That may be a fine idea if you’re eyeing the
clutter on the living room floor, or a pile or two of old magazines and
catalogues collecting dust in a corner.
But what has it got to do with coping with illness? Plenty.
Illness is never a welcomed guest in anyone’s
life. However, when it becomes a visitor
in yours, in many cases, it’s there to stay.
How you cope with it will determine, in great part, how well you love
your life. Of the three primary factors
which measure your ability to cope: your
attitude, the social context of your life, and the
quality of the resources available to you, your attitude becomes the foundation
upon which the others build.
Making a place in your life for illness may
sound like a strange thing to do, but it’s a crucial step in learning how to
cope with your disease and putting it in its place. Here are some suggestions and tips to help
you do this:
Acceptance
and Denial are Normal Responses
When you begin to accept
having an illness, you open yourself up to interacting with it. This will help you to make a place for it in
your life. Feeling both acceptance and
denial are normal responses to any major change, let alone a chronic
illness. Some forms of illness can
certainly limit you and contribute to your feeling different from other
people. The thing that makes you
different from others is what disease does to your body and how it can affect
your emotions. Adjusting to this can be
tough enough, don’t make it tougher by loosing you’re sense of self, your
integrity, and, most of all, your sense of humor. Accepting yourself as a person living with an
illness is a process. It doesn’t happen
all at once. Don’t be harsh on yourself
when you fluctuate between accepting your disease and denying it. Acceptance isn’t something you do once and
for all. It’s a process. Little by little as you accept your illness,
you will make room for it in your life.
Adapting
Takes Time and Patience
Like an onion, you peel
off one layer of change at a time. The
changes you are faced with challenge your ability to adapt. You may have to let go of, or even say
goodbye to some activities in your life, either for a time, or perhaps
permanently. Grieve this loss. Create a ritual to say goodbye to what is no
longer possible for you to do, but don’t deny those parts of your life which
you enjoyed and which were important to you.
They are a real part of your history and deserve your respect. Some of your life may be different than it
was before, but don’t treat your past and the things you enjoyed as if they
never existed. As you make the changes
that your illness requires, you can become more flexible and creative in
adapting to change. Keep a journal of
the changes you’ve already made and how you made them. This can serve as a reminder and as a guide
for making others as well. As you
develop a greater degree of flexibility in adapting to change, the easier
change becomes. Above all, don’t lose
heart!
Befriend
Illness as Part of Your Life
You already know how
illness affects your body. Now get to
know your relationship with it. If you
consider your disease an enemy to be crushed, or an unwelcome guest which you refuse to tolerate, how will you allow your illness
to be what it is, a part of your life which you can learn to befriend? Do you remember what Lincoln
said about a house divided against itself unable to stand? If you’re divided against yourself by
refusing to get to know this illness, or by waging war against it, how will you
come to befriend it? Consider giving
your illness a name and talk with it, or write it a letter. Speak from your heart and your passion. Include in your letter everything you think
and feel about your uninvited guest.
Don’t keep your thoughts running around in your mind creating
havoc. Then, listen to what your illness
says to you in return. If you find this
difficult to do, don’t be discouraged.
It is difficult, but there are rewards.
An uneasy alliance is better than none at all.
Feel
Like You’re Losing Yourself?
Do you feel as if your
blue moods are turning into dark depression?
Is inertia increasingly becoming more a part of your life? Do you do less for yourself on the days when
you could be doing more? Do you isolate
yourself from your loved ones and friends?
If over a period of time, you are regularly experiencing these feelings
and can’t shake them, don’t hesitate to find professional help. Ask your doctor to refer you to a therapist
whose specialty is working with people with chronic illness. These therapists can help you to make your
way through difficult times. Yes, it’s
important to talk with your friends and family, but talking with a professional
can be very freeing. They are available
to help you sort out your experiences and the many feelings and thoughts you
have about yourself and your illness.
This isn’t the time to “tough it out”, or attempt to dismiss your
feelings with a mind over matter mentality.
Allow yourself to get whatever help you need. It can make a real difference in your life.
Too
Much Illness Talk?
Do you feel that talking
about illness is taking more of your time and energy than you would like it
to? Is it wearing on your family and
friends? That can happen, especially
when you’re first learning about your illness.
If it becomes a habit and you feel as if you’re losing perspective,
here’s a way to regain your balance.
Create “talk space”. Choose a
comfortable place in a room in your home and make time to talk about your
disease with your partner and family.
Let them know what you’re experiencing and thinking. This is a time for honest sharing, for you
and for your loved ones. Allow this
“talk space” to be the place and time where you discuss your illness. Keep the rest of your home an “illness free
talk zone”. This will allow you and your
family to enjoy one another’s company and conversation without reverting to the
topic of illness.
Seeing
With New Eyes Doesn’t Mean Looking Through Rose Colored Glasses
When
it comes to putting illness in its place, you might try seeing with new
eyes. When it takes you more time to do
just about everything, when simple tasks frustrate you because they’re not so
simple to do anymore, when the familiar becomes foreign, when you can not do
the many things you once loved doing, maybe seeing with new eyes can help. If you were an artist and can no longer
paint, you can still go to museums or art galleries. If you can’t do that, you can enjoy art on
the Internet and in books. If you worked with your hands and can no longer use tools to do a
job or hobby, teach someone else to do what you know how to do so well. Share your knowledge and lend your
expertise. If you loved nature and the
outdoors, but can no longer hike, drive along some of the scenic roadways and
enjoy the beauty and majesty of nature.
Find a way to keep what you have been passionate about in your
life. It takes time, work, patience, spirit
and heart to make a place for illness in your life. Seeing with new eyes is a tribute to courage
and the ability to put this illness in its place.
****************************************
Reprinted from Daytona Beach News Journal, August
14, 2003
FDA
OKs wheelchair that
climbs stairs
WASHINGTON – Stairs are about to become less of an obstacle for
some of the nation’s 2 million wheelchair users.
The
Food and Drug Administration on Wednesday approved a wheelchair that literally
can go up and down steps – as well as shift into four-wheel drive for grassy
hills and elevate its occupant to standing height.
Called
the IBOT Mobility System, the $29,000 wheelchair uses sensors and gyroscopes to
navigate stairs while balancing on two wheels.
It is so complex the FDA decided the wheelchair will require a doctor’s
prescription and special training.
-
Associated Press
FECPPSG Editor’s Note:- Wouldn’t it be nice if one day this was affordable and we no
longer had to worry if something was accessible with ramps or curb cuts….. oh, well, who knows
what the future will bring.
****************************************
The following article is reprinted
with the permission of its author, Dr. Henry Holland, a member of the Central
Virginia PPSG. This article is in their
current newsletter (August – September 2003)
The
Great Crippler,
Then
and Now
By Dr. Henry Holland
The poliovirus is a unique
virus. This virus only thrives in
humans. It can enter your body by an
oral pathway, cause a gastrointestinal illness and leave your body with no apparent
residual damage. More people had polio this way and probably never knew
it. The other extreme of this virus was
its success as the great crippler of children. It was also a killer of
children. This virus could invade a human body and kill in a few days. Death
resulted from respiratory failure or from the overwhelming viral invasion of
the entire central nervous system leading to coma and death. The observed and
later written observations and descriptions of children dying from acute polio
are emotionally draining to read. Most
of us who experienced polio did so in childhood and many were left with
residual damage that set us apart from our peers. The most commonly used word
to describe this damage was “crippled.”
Many larger cities had hospitals for crippled children “Crippled” is a painfully accurate
word. The Merriam Webster Dictionary
traces “cripple or crippled” to the fourteenth century. It means:
1 : to be deprived of the use of a limb
and especially a leg
2 : to be deprived of capability for
service or of strength, efficiency, or wholeness
The crippled state of polio
survivors could cover a vast range of limitations. It could be something as minor as a visually
undetectable weakness in one ankle to a near quadriplegia state requiring the
use of a wheelchair or leg braces and crutches. Definition number one above is
fairly easy to understand and comprehend.
Treating the crippled state of an extremity was often easier to
accomplish. Many were fortunate to be able to regain all or almost all of the
use of a weakened extremity because of physical therapy and exercise. Of course
now we know that undamaged motor neurons were capable of sprouting additional
dendrites to innervate more damaged muscle groups and result in increased
function of these previously damaged muscle groups. Even when the damage was
extensive a well fitted brace would make it possible for a crippled leg to
support weight and make it possible for a crippled polio child to get back on
his/her feet and return to the world beyond the security of home. Returning to
school, socializing with able-bodied friends, going to church, movies, soda
fountains, toy stores, and playgrounds were again possible. Many of us are familiar with this pilgrimage.
I am more intrigued by the second
part of the definition above. The concept of “wholeness” or a sense of
“wholeness” is an important aspect of anyone’s development. If that feeling of
wholeness is altered by the reality of being crippled, then the developing
child and adolescent has to either withdraw from the risks of socialization or
find ways to cope and defend himself/herself out in the world. I am convinced that almost all of us chose
the second route; that is we engaged the world around us despite the
interpersonal risks. The fruits of taking this risk surround us as we read
about the accomplishments of polio survivors, know first hand about the courage
and perseverance of polio survivors from our own interaction with them in support
groups, and from what the able bodied have said about us.
Almost by necessity, most of us
compensated for our crippled state, denied the reality of our crippled
appearance, and made every effort to be normal in the normal world around us.
If crippled in reality and feeling a lack of wholeness, as adolescents how did
we cope with the challenges of relating to the opposite sex? Did we feel inadequate or simply
uncomfortable in the social undertaking of dating? By excelling in other areas,
many of us compensated and sublimated successfully in an attempt to level the
social playing field. Since the vast
majority of us married and worked productively, we apparently did succeed in
our social and employment strivings.
Now as older adults we have had once
again to face the second part of the definition above. Many of us are
physically weaker, less efficient and less capable of providing service. Some probably feel less whole, and thus we
are “crippled” again by Post-Polio Syndrome, the second Great Crippler. Most of us had never even imagined such an
intensified decline in our overall functional state, as PPS has forced so many
of us to accept. Most of us knew that we
would get older, but thought that we would age more like our older family
members or people we knew in the senior generation. For so many PPS has aged us
prematurely. Those of us who may live
alone now realize our vulnerability to losing our independence and having to
find assistance in areas that most of our able bodied peers are not yet forced
to face. Those of us who have
able-bodied spouses are discovering that we depend on that spouse for some of
the simple tasks of daily living. Our
spouses are no longer young and do not always have the energy to carry the
extra burden. In simple terms, all of this PPS stuff seems so unfair.
In our initial struggle with the
Great Crippler, we were determined, generally optimistic, youthful in spirit,
and found our way in the race of life. With this second round with the Great
Crippler we are tired, not as optimistic, have to lower our expectations
despite our determination, and still find our way at a slower pace in the race
of life. We have all read the articles and listened to the lectures by the
growing number of PPS experts, most of whom are younger than we are. We are
reading more and more about the deaths of old polio survivors in our
newsletters. Our numbers will continue
to shrink just as the veterans of World War II; the survivors of the Holocaust
and members of Tom Brokaw’s Greatest Generation will diminish. Hopefully there will be a day in this century
when polio and photos of its crippled children will only be recorded in history
books and historical medical texts.
We have not finished the race of
life. But what is left for us to do? I
think we should tell our stories and share our pilgrimage as a result of this
disease. If you cannot tell your story, write about it or if artistically
inclined, illustrate it. If we do not, future generations will never know. We
probably would do well to establish more oral history collections within our
respective support groups. I have often
thought that we would do well to have a national or even an international
magazine or journal that was personal and historical and not just medical and
scientific. The Multiple Sclerosis Society has an excellent periodical. For so many people with the same disability,
we are relatively fragmented. There are
countless PPS newsletters and websites that often publish some of the same
articles. To my knowledge the only
national publication that serves us is Post-Polio Health (formerly Polio
Network News or Gazette International Networking Institute or GINI). This publication is excellent, but is only
published quarterly and is limited in size. I believe that there are many
untouched and undiscovered sources of polio witnesses in written form, personal
memories, and even in old newspapers.
This October I am scheduled to make a Grand Rounds presentation at the
Medical College of Virginia (now Virginia Commonwealth University Medical School), the medical school from which I
graduated thirty-seven years ago. My
topic will be “Polio, MCV, and Me.” I will attempt to describe my early
experience with polio, the importance of MCV in my life, and a biopsychosocial overview of the disease of polio from my
own analysis and the witness of others who will help me with this presentation.
The race is not over. Slow down and
share your story. If necessary, get
someone else to help you share your story. People will listen or will read. Stories from polio survivors are not
fiction. They are real. The Diary of Anne Frank has done more
to preserve the memory of the Holocaust than perhaps any other single
publication. This was a simple but brilliant diary by a teenage girl who told her
story as it happened. Time is growing
short. Tell your story of human suffering, of your splendor in the grass, and
your faith that looked past death.
William Wordsworth wrote it much better than me.
INTIMATIONS OF IMMORTALITY FROM
RECOLLECTIONS OF EARLY CHILDHOOD
X
Then sing, ye Birds, sing, sing a joyous song!
And let the young Lambs bound
As to the tabor's sound!
We in thought will join your throng,
Ye that pipe and ye that play,
Ye that through your hearts to-day
Feel the gladness of the May!
What though the radiance which was once so bright
Be now for ever taken from my sight,
Though nothing can bring back the hour
Of splendour in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind;
In the primal sympathy
Which having been must ever be;
In the soothing thoughts that spring
Out of human suffering;
In the faith that looks through death,
In years that bring the philosophic mind.
****************************************
UPCOMING
CONFERENCE
Are you a vent user? Do you
know a vent user? Enter the drawing to receive
funds to attend the Ninth International Conference on noninvasive Ventilation, October
23-25, 2003
in Orlando, Florida.
For details: http://www.post-polio.org/ivun/
Post-Polio Health International
including
International Ventilator Users
Network
4207 Lindell
Blvd #110
Saint Louis, MO 63108
info@post-polio.org www.post-olio.org
314-534-0475 314-534-5070 fax
****************************************
Reprinted from Daytona Beach News Journal, July 26, 2003 – Images
TESTING
one two
three…forty, fifty, sixty
By Susan Wright
As
some wag remarked, “Thirty-five is when you start getting your head together
and your body starts falling apart.”
And
Bette Davis is credited with saying that “old age ain’t
for sissies.”
Sometime
after 35 and before actual old age (however you define that),
it’s time to stop taking your body for granted.
Recent
advances in medicine, nutrition and life style have changed our expectations of
our “golden years.” We’re not about to
go gracefully into a life spent rocking on the porch waiting. A lot has changed in how we age and we expect
to be much more active and involved as we enter our 50s, 60s and 70s – but
scientists can’t yet change the basic fact that we are gradually wearing down
and out over the years and some things can’t be changed. Our genes will determine many aspects of how
we age and how long we live (Bob Hope just celebrated his hundredth birthday –
and he may have his ancestors to thank rather than his success or healthy life
style. His father also reached one
hundred.)
But,
we can do much to maximize the genetic make-up we’ve been dealt.
Eating
well, exercise, fresh air and a positive attitude can make the most of the time
we have. And medical science can help –
if we cooperate by making sure we get the tests and check ups needed to treat
all the conditions and diseases that may threaten our health and life spans.
So,
here’s a decade by decade guide to what changes to expect, what measures you
need to take to stave off whatever deterioration is inevitable or tests you
need to take to detect real dangers before it’s too late.
40s None of us, even star athletes in constant training, can entirely elude the
aging process – when muscle mass and strength decline, bones start to thin and
lung capacity just isn’t the same. The percentage of body fat decreases – and moves. Skin starts to thin.
Sometimes
between 40 and 50, bifocals become unavoidable for almost everyone.
Joints
can already start to become painful and stiff due to loss of cartilage, and
common forms of arthritis can set in as early as the 30s and continue to
progress for the rest of the sufferers life.
TESTING:
Starting at about age 45, everyone needs to get into a routine
including: tetanus shots (every 10
years); chickenpox vaccine (those who didn’t already have the disease); annual
Pap test and mammogram (for women); digital rectal exam for colon cancer;
glucose (blood sugar), cholesterol and blood pressure checks. Men will need to get an EKG every three years
to check their hearts.
50s Women who haven’t already entered the drastic change known as menopause –
and 4,000 women do every year – can count on dealing with such symptoms as
night sweats and mood swings. Those are
temporary and each woman will have to decide for herself how to deal with
them. Weight gain and increased risk of
osteoporosis are more permanent repercussions, along with increased risk for
heart disease. Menopause is when women’s
risk for heart disease catches up with men’s and- both will continue to need regular
screening.
Everyone’s metabolism changes so that they
need to eat less to keep the same weight.
Eyes are more susceptible to glare and night vision declines. Kidneys shrink and the bladder can’t hold as
much. Men discover the perils of an
assortment of prostrate problems and cancer looms as a real danger for both
sexes – with 80 per cent of all cancers occurring after the fiftieth
birthday. Diabetes is another real
concern.
TESTING: Ah – until now, the tests needed seemed to be
all about putting up with a needle to draw blood. Now, things get a little more invasive. As in tubes up places you don’t want to think
about. Starting at 50, you’ll need a
flexible sigmoidoscopy with barium enema to screen
for colon cancer every five years, and every five to 10 years, there’s the more
extensive version, a colonoscopy. Men
need to go for annual PSA blood tests to check for prostate cancer. Women should start having a bone density
screening test (no tubes involved) every three years while men go for annual
PSA blood tests to check for prostate cancer.
Women join the men now in needing that annual EKG for heart health
screening.
60s So now what? Blood vessels
naturally start thickening – and if you’ve overdone it with a high cholesterol
diet in the past the combination can add up to trouble. Men, too, need to start worrying about
osteoporosis and women can face serious debilitation.
Vision
problems can now escalate from merely having trouble reading to real risk of
blindness from macular degeneration, the most common form, and hearing problems
start to surface, with sensitivity to high and low-pitched sounds accelerating.
Glucose
metabolism starts to decline, leading to degeneration of vital organs.
TESTING: The whole gamut of health tests and screenings
begun over the past two decades is even more essential at this point. And, it’s time to start getting regular flu
and pneumonia vaccinations, as those illnesses are more dangerous as the body
ages.
70s If you thought you were having trouble with your memory or reaction time
before, you’ll really notice it now as the brain cells that started gradually
disappearing in your 20s really start to go now. Blood circulation will get sluggish, making
you more vulnerable to cold. Men lose
their hearing twice as fast as women, while women are more frail. Both sexes will have more trouble just
breathing as maximum breathing capacity will decline by 40 percent by the time
they enter their 80s. It’s more
important than ever to keep up with the daily walk or swim as the effort gets
harder. Heart rate during exercise is
down by about 25 percent.
And
your appetite decreases – possibly leading to nutritional deficiencies, leading
to further decline and illness. Not to
mention the fact the infection-fighting cells have decreased, making those flu
and pneumonia vaccinations even more important.
80s However, don’t despair. Those who manage to make it to 85 without
major health problems, can still have years of life
left in them.
~*~*~*~*~*~*~*~
Problem
Areas:-
EYES:- Keep an eye on prospective vision problems
starting at age 45. Potential problems
to look out for: glaucoma, cataracts and
macular degeneration.
All
are serious problems requiring early detection to treat. By 65, start scheduling an annual visit with
the eye doctor to prevent blindness.
Glaucoma is caused by pressure in the eye. Risk factors include: diabetes, family history, or African-American
racial background.
Cataracts are clouding of the eye lens. They may be treated surgically.
Macular degeneration is caused by deterioration of the retina and
leads to blindness. The problem can be
slowed byt not cured.
EARS:- A common health problem anyone in their later
years, especially after 50. Anyone who
has had to strain to hear normal conversation, radio or television, should
request a hearing test from their doctor.
MUSCLE,
JOINTS, BONES AND TEETH:-
Calcium or bone mineral starts to decline as early as 35 and accelerates
after menopause in women and after about 60 in men. The condition of
osteoporosis is dangerous because it can lead to serious bone fractures that
are debilitating, particularly to the elderly.
More common in women than men, it’s still a concern to both. There is no cure, so prevention is the
key. That means getting weight-bearing
exercise and eating calcium-rich foods such as dairy products and dark green
leafy vegetables and, for many, taking calcium supplements.
Women
will need a regular bone density test starting after menopause and men in their
60s.
Joints
also start to go – meaning the cartilage that makes all that bending and stress
possible is wearing out, resulting in stiffness and pain. Some forms start in the 30s, and the
condition affects people of all ages, but is especially prevalent in older
Americans. The Center for Disease
Control reports that 21 million people 65 and older are affected and the number
is rising.
Exercise,
diet, medication and in some cases surgery may be required.
Muscle mass also decreases – again, exercise
staves off disability.
(FECPPSG
Editor’s Note:- Those of us who have Post-Polio
should be very careful about doing exercises.
Remember, our muscles, joints, and bones were weakened many years ago. Many of our able-bodied friends are now
beginning to experience some of the difficulties we have been facing for
years.)
CHRONIC CONDITIONS:-
Heart Disease is the No. 1 killer, but
the other two; stroke, kidney disease, aren’t far behind. High blood pressure and cholesterol are major
causes of all three potentially fatal conditions. A balanced diet of healthy foods, adequate
exercise and maintaining a healthy weight are important preventatives.
Screen for blood pressure and cholesterol (a
simple blood test) annually, more often if they’ve been high in the past. Get an EKG treadmill stress test to check
your heart health every three years.
(FECPPST
Editor’s Note:-
Many of us can’t do
the treadmill stress test, so ask the doctor for some other form – such as the
arm/bicycle stress test.)
Diabetes, type 2: After 45, the chances
of developing this chronic condition which can result in serious complications
including kidney failure, poor circulation, vision loss, increase
significantly. Risk factors
include: overweight, diabetes during
pregnancy, family history.
Need:- annual glucose screenings.
CANCER:- While
cancer can occur at any age, the vast majority develop in people over 40 – in
fact, about 80 percent of all cancers occur after 50.
While lung cancer is the type smokers and
those who live with them tend to worry about most, (and they know they need to
stop smoking) some of the others are just as deadly, some are concerns for
everyone and others are specific to one gender.
Colon
cancer: Starting at 50, everyone needs to be screened
for this potentially deadly disease. A
variety of tests are available:
w fecal occult blood test, should be done annually.
w sigmoidoscopy
with barium enema (the doctor looks inside the rectum and colon using small,
lighted tube), every five years.
w colonoscopy – an outpatient procedure requiring sedation for
the actual procedure and preparation, including laxatives, the day before. A more extensive version of
the sigmoidoscopy, to be done every five to 10 years.
Skin cancer: A particular concern for Florida residents, especially those who grew up in
the state, and the most common type of cancer in the country. Requires an office visit so
your family doctor or a dermatologist can examine the skin for any unusual
pigment or moles.
Oral cancer: Cancers of the lip, tongue, pharynx, or
mouth that usually occur in people over 40 who use tobacco or alcohol. Ask your dentist to check for signs of these
cancers during regular checkups.
Men’s
Only Cancer(s)
Prostate: Annual tests recommended to
screen for this very common cancer in men starting at age 50, earlier
for African-Americans (who have a higher risk) and those with family
history. Screening includes both a blood
test to check for a prostate-specific antigen (PSA) and a rectal exam by a
doctor.
Women’s
Only Cancer(s)
Breast
cancer: Annual mammo-grams
recommended starting at 40, an office visit for a clinical exam by a doctor,
also starting at 40, and self breast exams should be done by every woman
starting before 30.
Cervical cancer: Annual pap tests and pelvic exams should
start as soon as a woman becomes sexually active. Older women need to continue even after
menopause.
Ovarian cancer: Annual pelvic exam will also check for cancer
of the ovaries, in which the doctor checks the ovaries for cysts or fibroid
tumors that could turn cancerous. Newer
screener methods also include a blood test and an ultrasound but they are still
being reviewed for effectiveness.
Women
with a family history of these cancers and those who were never pregnant are at
higher risk for ovarian cancer.
****************************************
The following article is reprinted from the Central Virginia PPSG, Polio Deja View, August-September 2003.
Impact of PPS
on a Polio Partner
By
Dave Van Aken
I am not an expert. I am a husband
and spouse. I am a Polio Partner, not a caregiver. There is a difference. A
Partner is anyone who works to better someone’s PPS situation. They can be a
spouse, a brother/sister, a child or a friend…and I am a survivor. If
necessary, I will adapt every day to our changing situation. When PPS came into
our lives, we Partners faced a choice – fight or flight. We chose to stay and fight. But what are we
fighting for? I am fighting to maintain my wife’s quality of life, as well as
our collective quality of life. My guess is we are each trying to accomplish
the same thing.
The one thing I have found that is
true about PPS is each survivor is different. As each survivor is different,
then each of our situations is different. We do, however, face one common theme
– coping with PPS involves a series of compromises. We must remain flexible and
tolerant, as we must adjust to our Partner’s ever-changing condition.
So, how are the Polio Partners
impacted by PPS? I believe there are three main impacts on the Polio family –
Financial, Physical, and Emotional.
Financial Impact
It simply costs more to be disabled.
Your family may have a loss in income. You may become the primary income
producer for the family. Adaptive devices become necessary or required: braces,
scooters, or power chairs. Modifications
to your home could include ramps, grab bars, higher
toilets, or even a new home. All create extra expense.
Traveling requires more forethought
and planning. Depending on your situation, the impromptu “escape” trips may be
a thing of the past. We trade in our sports cars for minivans to accommodate
scooters or electric chairs. Public transportation offers even more challenges.
Trains and plane service have advanced in dealing with the handicapped, but
often have a way to go to become trouble-free.
Physical Impact
We have all heard “Conserve to Preserve“ Most Polio Survivors have had this preached to them
repeatedly. We need to pay attention to this as well. We try to have our
Partners conserve their muscles and adapt to new methods and devices. We should
listen to our own advice and use technology, children, or friends to help share
our increased load. We are aging as well and our own aches and pains will
affect our ability to provide care for our Partners.
Emotional Impact
Early on, when we are naïve or
unknowledgeable, our expectations can be unrealistic. “If you do all of this, then you’ll get
better.” “When you get better, we’ll do this and that.” We (some older Partners
in one of our discussions) scared the “hell” out of a new Partner. As she
admitted later, she expected her husband to beat this and they would carry on
with the plans they had envisioned for themselves.
Anger, depression, anxiety. Our
Partners thought they beat polio over 30 years ago, and now it has come back to
haunt them. Their bodies are giving out, betraying them, and loosing
functionality. They loose “face” as they succumb to the adaptive devices in an
effort to save what is left. Is it any wonder, they get angry at the world, and
we, sometimes, bear the brunt of it?
We hurt as we watch our Spouse’s suffer both
emotionally and physically. At times, they loose their sense of self. As a culture, what we do for a living or
where we volunteer often defines us. As our Spouses curtail this type activity,
there is a sense of loss. This can trigger a sense of depression, which we, as
Partners, try to cope with and ease our Partner out of it.
There is the physical side, or pain we watch
our loved ones endure. We ache to be able to ease some of the pain they suffer.
In most cases, we pick up extra chores so they don’t have to do it.
We grieve over our futures. We – as couples
or as individuals – had dreams and desires. While they do not have to be
abandoned, they must be reevaluated.
Mid to Late Stages - As we grow older and more experienced with PPS,
continual adjustments have become the norm. We must accept each situational
change and move forward.
Fatigue periods can become common. These can
add more anxiety, anger or depression for our “Type A” spouses. Polio fatigue
crashes are real. Linda “crashed” in October of last year. For seven weeks, she
was flat on her back. I adjusted. I did the housework, the laundry, and the
cooking. Before October, my repartee in the kitchen was scrambled eggs or
waffles. But, I provided Linda with hours of entertainment as she directed my
efforts in the kitchen. We didn’t starve and weren’t poisoned, so I guess we
did ok. [Guys – spend some time in the kitchen before you have to. It’s a
survival skill!]
The hardest part I find in being a Partner is
watching the sometimes rapid decline of one of our Polio friends. We all know
it may come. We hope and pray it won’t. So, we nag and cajole our Partners and
friends into behaving and conserving their abilities. A Partner friend confided
that their biggest fear was not being physically able to care for their spouse.
On the other side, their Survivor’s biggest fear was becoming a burden on the
Partner. Our fears are so much the same.
Friends and Family
Unfortunately,
family and friends often judge our Partners by their appearance. What does
fatigue and muscle weakness look like? Part, if not most, of the problem is
that they look so normal. There is no disfigurement. They may have a slight
limp, which has become more pronounced now, and they should always use their
canes or crutches. Friends can’t understand why they can’t do this activity or
that. They see them in their scooters, or using their canes doing the
activities they choose. Why can’t they do it all just like they used to?
Friends and family do not understand the
Survivor must make choices each and every day about the most mundane things. My
wife has a system she calls “energy presents.” Every activity uses some energy
presents. She has about 10 presents each day. So she monitors what she does,
and tries not to exceed her 10 presents per day. But, sometimes she does, and
she must take extra rest. And if she really blows it out, we both may enjoy the
short term, but both of us will suffer the consequences.
What Can We, as Partners, Do?
Communicate, communicate, and communicate! You and your Partner must communicate
on your fears, your concerns, and your plans on how to move forward. Sometimes
these discussions can become heated – I prefer to think of them as passionate
discussions (I think every relationship needs passion). The
more emotional and honest, the better the understanding between both of you.
Educate yourself – Knowledge is Power. Find out as much as
you can about Polio and PPS. Apply what you learn to your situation.
Educate your family and friends. You need the
help, and your Partner needs the support. If your family and friends don’t get
it, you have a choice – either continue to educate or drop off (another loss).
It’s your energy you are using, thus your choice.
Take Care of Yourself. Take charge of your life; do not let your
Partner’s disability or illness always take center stage. Be good to yourself,
you deserve it. You are doing a very hard job. When people offer to help, let
them. The task may not be done “the way you would,” but it will be done. Grieve
for your losses, and then begin dreaming new dreams. Trust your instincts. They
will be right most of the time.
Seek support from other Partners. There is strength in knowing you are not
alone. Many of the Survivors belong to a PPS support group. Do you, as a
Partner, attend these meetings? Do other Partners attend? Grab some of the
other Partners and go get some coffee while the PPSers
meet. Encourage your support group to give you an opportunity to meet separately.
Often a general discussion is all the agenda needed.
Central VA PPS group discovered this at our
annual retreat about 4 years ago. We had a Partners forum where we openly
discussed our concerns, fear, and things that worked. We invited a minister to
come and facilitate our first meeting. Since that meeting, I have been
facilitating meetings for Partners about 2 times each year. Our discussions are
usually about what is going on in our lives at that moment, and we share what
works for us and what doesn’t.
There are some online support groups, but
mostly they deal with PPS. There are some Caregiving
web pages, which provide some good information, but not strictly on PPS. I
don’t have a lot of experience with these, because like most of us, we Partners
don’t have a lot of free time anyway.
As I said in the beginning, I am not an
expert. If you have questions about a Partner’s session, I would be happy to
help. If you have specific questions about Partnering, I would be glad to help.
I have some special Partner friends who have more experience than I do, so
maybe we can provide an answer. I can be reached at DvanAken@aol.com
but be certain to mention PPS in the subject title or I might not open your
message.
****************************************
Note from Barbara:-
I was looking for a birthday card to send to a very dear, loving friend,
who is like a mother to me, and who was turning 93. I found the following on a Hallmark card,
which I would like to share with everyone as it is truly beautiful.
~*~*~*~*~*~*~*~
Life can’t be counted in candles
or measured in number of
years,
it’s counted in small joys
and good times and laugh
lines,
as well as in heartaches and
tears.
Life can’t be counted in candles
but in things done with effort
and pride –
with dreams followed boldly
and hopes kept alive –
in times when we’ve failed –
but tried.
Life can’t be counted in candles
or measured in years that
have flown –
it’s counted in kindnesses,
close friends, and loved ones,
and in all the sweet blessings
we’ve known.
Wishing you always –
love to surround you,
warm memories to cheer you,
and happiness to fill your
heart.
~*~*~*~*~*~*~*~
I hope you thought it as beautiful
as I did.
Barbara
****************************************
Reprinted from
The Post Polio Support Group of Orange County, Fountain Valley, CA, August 2003,
Vol. 15, No. 7 – Originally published in Ottawa & District Post-Polio Assoc
bulletin, Vol 19, No. 1, Spring
2003 and updated by the author on April
25, 2003.
How Surgical Relaxation of my
Upper Esophageal Spincter
Benefited Me
By Peter C. Ellis, bulbar Polio
Survivor,
Nepean Ontario
Determined
by a post-operative videofluoroscopy of a modified barium
swallow study assessed by a radiologist and speech language pathologist.
Problems Since 1997
Moderate to severe
swallowing difficulty in the throat, a constricted upper esophageal sphincter
(UES) and a small diverticulum (pouch) in the front
just above the UES.
Recommendations made in December
2001
After having a second modified
barium swallow video x-ray study in 2001, I was asked to explore the
possibilities of having my UES surgical relaxed by an Ear Nose Throat (ENT)
specialist in the short term, and also to explore the possibility of having a
feeding tube installed in my stomach by a gastroenterologist in the long
run. A feeding tube did not appear a
very attractive solution, so I decided to go for the UES relaxation surgery.
Complaints and Symptoms Before the Operation
1. Food and secretions pooled in my throat at
the entrance to the UES. Food also
collected in my pouch.
2. Had great difficulty in passing food from my
throat into my esophagus.
3. Had to use up to ten
multiple swallows to get food down with sips of water.
4. Sometimes food that entered the upper
sphincter came back up into my throat.
5. Had great difficulty in speaking with a clear
voice through my secretions.
6. Was always coughing up mucus and secretions.
7. Had walking
pneumonia in 2001.
Surgery January
28, 2003
My ENT doctor surgically cut my UES
muscle to relax it but used caution so as not to relax the muscle completely
for fear of giving me reflux problems.
My pouch was not repaired because it was too small
Post-Surgical Benefits
The post-operative modified barium
swallow video x-ray study revealed the following:
1. Pooling of food and
secretions has now disappeared.
2. My swallowing is less effortful and takes
less time.
3. There is no evidence of aspiration.
4. I use up to five multiple swallows as
compared to ten with sips of water.
5. Food still collects in my pouch. MY ENT doctor says that, in time, my pouch
will gradually disappear, this eliminating this problem.
6. My speech is
much clearer.
7. I still cough up lots of mucus during the
day. Will be referred
to a respirologist again.
Summary
After six weeks, I can say that I am
very happy and satisfied with the results.
It took me some time to find a willing and experienced doctor to do the
operation as I could not find an ENT specialist who had carried out this
procedure on a bulbar polio survivor. My
ENT doctor was young, full of confidence, and had lots of experience in
carrying out this operation on cancer patients.
I was the first bulbar polio patient that he had ever operated on. I would recommend this procedure to any one
who has a constricted upper esophageal sphincter and who has a very weak
throat.
****************************************
The following
article is reprinted with the permission of Mary Clarke Atwood of the Rancho
Los Amigos PPSG.
You and Your Medications
With Judy Shigemitsu, Pharm.D.
Reported by Mary Clarke Atwood
Editorial assistance by J. Shigemitsu
The Rancho Los Amigos Post-Polio
Support Group was privileged again to welcome drug expert Judy Shigemitsu, Pharm. D. on February
22, 2003.
For the past 21 years she has been a staff pharmacist at Torrance Memorial Medical Center in California. She is a very enthusiastic and
knowledgeable profes-sional.
This report provides a basic
understanding of medications, helpful tips, hints for compliance, and
medication cautions for people with PPS, plus detailed information on common
calcium supplements.
What is a Medication?
Medications include over-the-counter
drugs (OTCs), herbals, dietary supple-ments, as well
as prescription drugs. They are taken to help or correct a disease state or to
help a person feel better. They all are chemicals and work in your body that
way.
Side effects are very
individualized. They can be predicted according to where the drug action
occurs. If the drug action occurs in the brain or in the central nervous
system, possible side effects could be dizziness or drowsiness.
Because of the chemical nature, some
medications are very irritating to the stomach and can actually cause nausea or
vomiting or even ulcers. Some
respiratory medications can heart cause palpitations. When side effects do
occur initially, they usually taper off after two weeks. Side effects can
reappear whenever the dose of a medication is changed. If the side effects
cannot be tolerated, adjustments can be made by possibly changing the dosage,
changing the time the drug is taken, or changing the drug.
Adverse drug reactions are not
predictable. While a drug is being studied and developed, it is under ideal
conditions. After it is released to the public, adverse reactions can appear
that were previously not known.
There can also be interactions among
the other medications a person takes - between a drug and food, between a drug
and an herbal, and between a drug and dietary supplements.
The Basics
In order to understand medications
and their effects, keep in mind some basics:
·
All
medications, including prescriptions, OTCs, and herbals, contain a chemical
that can be potentially dangerous. The
active chemical in the product is the important factor, whether it is a root,
leaf, stalk, etc. Natural does not mean safe or interaction free.
·
The
body absorbs these chemicals in the lower stomach and upper intestine.
·
Most
drugs are then metabolized through the liver.
Auxiliary labels warn of any
restrictions for taking a medication. Some examples are:
·
With
or without meals; take with food; take on an empty stomach.
·
Take
with lots of water.
·
No
dairy products, antacids, vitamin supplements (iron, magnesium, calcium, zinc).
·
Swallow
whole - do not crush; dissolve in water.
As people age they become more
sensitive to medications for two reasons:
1)
Some
muscle mass changes to fat.
2)
Kidney
function slows down.
Trade Name
versus Generic
A drug patent lasts for 17 years, so
only older drugs are available in generic versions. The bioavailability of
compounds in a generic drug and the trade name drug must be equal. Currently
there are many large pharmaceutical companies that also have their own separate
generic manufacturing plants. In some
cases they market the same product but under a different label. By and large,
generic drugs from reputable manufacturers are accept-able. (Some HMOs require therapeutic substitution
of drugs.)
Compliance
It is important to take your
medications as prescribed. Drug regimens are “scheduled” or “prn” – as needed. Find a good method for remembering to
take your medications. If you have difficulty remembering, or swallowing, or
opening vials, etc. the medication may be available in a different form
(tablets, capsules, liquids, topicals, inhalers, injectables).
Ask your pharmacist or physician
what to do if a dose is missed, or before stopping any medication. Stopping a
medication abruptly may be harmful.
Cautions for
people with PPS
People who have PPS must be very
careful when taking drugs that work in the central nervous system. The statins (Zocor, Lipitor, etc.) and nonsteroidal
anti-inflammatory drugs (NSAIDs) — such as aspirin,
ibuprofen (Advil, Motrin, others) may cause muscle weakness as a side effect.
People need to be aware that side effects are possible.
If a blood count reveals that a
person has low potassium or low calcium, muscle cramps can occur. Natural
sources such as fresh fruit and vegetables are recommended to help return those
low levels to a more normal range.
Helpful Tips
·
Learn
which medications may worsen your condition.
·
Learn
what “Urgent” medications to use in an emergency.
·
Keep
an accurate, updated record of your allergies (and type of reaction) and of all
your medications (Rx, OTC, supplements, and herbals).
·
Periodically
review your medications with the doctor, especially when a new medication is
prescribed.
·
Find
one pharmacy to fill all prescriptions.
·
Avoid
self-medicating by adjusting doses, borrowing, or using old prescriptions.
·
Don’t
be afraid to ask questions.
All about
Calcium
Calcium is poorly absorbed into the
body and is also affected by food and gastric pH. Calcium supplements are
available in different forms: chewable tablets, coated tablets, and liquids.
The OTC forms are considered a food supplement so there could be issues with
the quality of a product. Good manufacturing practice standards are not
required in dietary supplements.
Contamination and amount of drug in these supplements are not FDA
regulated. Too much calcium can lead to a medical emergency (confusion, delirium,
stupor, and coma) or kidney stones.
Never take more than 600 mg. of
calcium at one time and take it with at least 8 ounces of water. If higher
doses of calcium like 1200mg or 1500mg are recommended by the physician, take
only 500mg or 600mg two or three times a day. Eating a balanced diet and
periodic exposure to sunlight usually satisfies normal vitamin D requirements
so supplements are not often needed.
The most common side effects of
calcium supplements are constipation, intestinal gas, and kidney stones. Notify
the physician if any of the following occur:
Anorexia;
continual nausea, vomiting, constipation, abdominal pain; dry mouth, thirst or polyuria (early signs of hypercalcemia).
Dr. Shigemitsu
provided us with the following common calcium supplements chart. She reminded
us that elderly males need calcium too.
