PPS in 2 Minutes or Less
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Here is a short explanation to share with family and friends, to help you begin opening the doors of communication with them. In most cases, your family members are just as frieghtened by what they are seeing happen to you as you are ging through it. The natural urge to flee from what is feared becomes all too tempting to them.
We suggest that you highlight the following article and print out several copies of it, Then write a personal note to anyone you are planning on sharing it with telling them that you are still the person you have always been and still love and care about them, but that they need to open their minds and hearts to educate themselves about what is happening to you, and that you have little to no control over what is happening. You may not be able to satisfy all their needs or wants instantaneously as you used to try to do but that your love is just as strong as ever and that you really need their love,. understanig and cooperation to help you maintain as much ability as possible for as long as possible. If you follow the links we provide you with, print out information and leave it where they can read it without feeling self-conscious about it, and will be open and honest if or when they want to ask questions, it will help minimize the damage to those relationships that will otherwise probably rear their ugly heads.
PPS in under two minutes
Original author Unknown
Have you tried to explain Post Polio Syndrome to a
friend or relative? Maybe half-way through you
notice them nodding off?
Try this two minute drill.
Our brain communicates with our muscles through the nerves.
Polio destroys those nerve cells causing our muscles to
die. The beautiful thing about nerves is that they help
each other When one goes down others help out, so a
person can lose many nerve cells and not experience much
dysfunction. Most Polio survivors have been living in
this state of fewer nerve cells for years. If they were
very young when they contracted Polio they may have grown
up thinking this was normal. All people's nerve cells die
off with age. For the normal person, having many nerve
cells, this is not a problem. For those of us that have
been living with a reduced number of nerve cells, this
can result in a variety of symptoms including weakness,
fatigue and pain, to name just a few.
++++++++++++++++++++++++++++++++
Some Examples:
Polio stuff or PPS stuff, or you know what I mean:
Polio folks get up in the morning, too tired, moving slow,
so have spaghetti for breakfast so they can take their
medicine.
Polio folks have a "piano player mind" -- doesn't shut off
when you need to rest the most -- sugar does shuts the body
down, and revs the mind up.
Polio folks are often misunderstood. What comes out of the mouth
is sometimes said faster (or slower) and does not keep up with the brain.
We know what we want to say but have one heck of a time getting it out.
Polio folks have eyes that focus sometimes, and sometimes
not. They can miss an entire chapter in the book they are reading,
and hope they signed a contract right, if they could read it in the first place.
Eyes twitching, usually indicates they are on circuit overload.
Polio folks, largely Type A's, are definitely driven beyond realization that
they hit the Polio wall sometime back but didn't even notice. They say
they will pace, will stop soon and lie down. Sometimes they do lie down,
and then all of a sudden are up and at it again, not even thinking that they
made a "deal" to go rest. The scrolling piano player mind again, wouldn't
shut off long enough to allow them to rest in the first place.
PPS folks are successful people who drove themselves hard
for those successes. Three times harder than the average
"normal" person.
Polio folks are afraid of imposing on others, would rather
do it themelves than dare to ask for any help. Tote that
barge, lift that bale, even in the laps in their wheelchairs.
"No, i'm fine, i can do it" -- more Type A.
Polio folks can be starving, and then after eating, feel
sick. Soft muscle, any soft muscle can be affected by PPS.
Eating too fast may be a key.
Polio folks have heartburn, lots of us have hiatal hernias,
Polio folks, or lots of them, have high blood pressure.
Polio folks often get the "oh, but you look like a
million" -- it is downright impossible to explain this.
Polio folks often have allergies, you can tell by the
kleenex-es in the car, in the kitchen, by the bed, by the
sofa, and the ones still sticking out of the nose.
Polio folks have itchy ears, hence the mad dash for a
bobbie pin to help alleviate the wild itch -- symptomatic
nerve system?? So some PPS doctors say.
PPS folks have a thermostat problem, body temperature low,
legs frozen to the ground, top half burning up and sweats
-- menopause may be excluded here.
PPS folks have a real thing with sensitivity - cold or hot,
or feelings hurt, emotions on high.
Polio folks sometimes have a startle reflex problem. You
can tell this easily the next time they are startled from a
piece of lint floating in the air, and they have landed in
the arms or lap of a stranger
A PPSer may never have originally known anyone else with Polio, but when PPS hits it is critical for them to find a true peer group for support and to gather the knowledge that the ones that started with PPS earlier have already gathered, sorted through and found to be accurate and helpful.
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