Hi Patty
I am not to be seen as a Medical Expert on PPS in
anyway, and any information I pass along is from my
experience only as a polio survivor, information
supplied by Dr. Richard Bruno, who is world famous for
his studies into PPS, and from my information I have
gathered as Chair,and Board Member for the
International Post Polio Syndrome Support
Organisation.
From what I read of your e-mail, you are seeing the
effects of Post Polio Syndrome which is very common
for polio survivors 20-30 years after the initial
attack of Polio.
What happens when you are first struck with the polio
virus, is an attack on the Motor Nuerons in your spine
that control literally every muscle, nerve, and basic
functions of your body.
Usually about 90% of these motor nuerons are affected,
and of these, usually about 50% are either killed off
or damaged.
The human body being the wonderful adapter that it is,
will repair this damage by growing small nerve ends (
think of them as little telephone wires ) from the
nerve ends that were not damaged to the muscles that
were affected by the Polio Virus.
With therapy, and a lot of exercise and determination,
you learn to return to a quasi-normal physical state,
and can function sometimes very well on half the Motor
Nuerons a person would normally have. In other words,
the Nuerons that were not damaged, take up the work of
the Nuerons that were damaged or killed off. This is
sometimes reffered to as having them do double duty.
As we age, we go through various stages of recovery,
and some of us even manage to become Passers. That is
someone who can appear as if they are not handicapped
at all. We also become what is known as a type A
personality, which means we strive to do everything
perfect so we will not be seen as having any handicap
at all.
Many people who were struck with the Polio Virus lived
extremely productive lives because we put so much
effort into everything that we did.
Howvever, after years of exertion, and straining the
motor nuerons we had remaining in our bodies, they
slowly begin to die off, or just plain wear out.
As a result, we suffer from muscle weakness, chronic
pain, and even lose our abilities to do some of the
most mundane things we took for normal in our lives.
As these motor nuerons weaken or die off, it puts even
more strain on the motor nuerons we use, and it
becomes harder and harder for us to just move, or even
get out of bed in the morning.
The old adage of "use it or lose it" is probably one
of the most damaging things that we can do to our
bodies. Instead we need to develop a "conserve to
preserve" attitude, putting as little strain on our
bodies, and muscles as possible.
If you are doing something that causes you pain, it is
a sign that you are putting excess strain on the
remaining muscles in your body, and are doing damage
to them.
After resting or sitting quiet for awhile, you may see
the pain subside, and think that you can return to
doing physical activities again that again put more
stress on your bodies muscles and motor neurons. Again
, you start to feel pain, and sit or lie down until
the pain subsides.
However, I would like you to think of the battery in
your car for just a moment here.
If you leave the lights on in your car all night, when
you come out in the morning, your battery is dead. No
problem.... A simple boost and your battery slowly
recharges again.
The next night you do the same thing, and require a
boost to get your vehicle running again.
As you repeat this cycle, soon your battery will not
take a boost,is ruined,and needs to be replaced.
This is the same cycle that you are putting your body
through every time you exert yourself and do things
that make you have pain.
However, unlike a car battery, there is NO WAY that
the ruined,or dead motor nuerons can be replaced,or
repaired. So basically, you are slowly killing off
your ability to function as a person.
Granted, you do need some exercise,or stretching, to
keep your muscles from going into atrophy.
But it needs to be the least harmful exercise that you
are capable of doing, and swimming is an excellent way
of keeping this movement in your muscles. Doing
stretches is also a very good excrecise, but should be
done under the care of a physio therapist at first to
insure you are not overdoing something that may cause
damage to your body.
Unfortunately, Patty the only thing that is effective
for pain control is through the use of pain
medications.
I was really very concerned when I was first put on
pain meds, as the only thing that can be taken over an
extended period of time, is some type of Narcotic.
I asked several of my Drs. about the addiction factor
of taking Narcotics, and each and everyone of them
said this should not be a concern, as I will probably
be on these meds for the rest of my life, BECAUSE I
NEED THEM. It is not a case of taking Narcotics for
recreational use, and there is no shame on an
addiction to a Medicine that you require.
I am taking 160 MG. of Oxycontin twice a day to
control my pain, and find it to be a tremendous help.
There are many pain meds available, and as time goes
by you may need to take stronger and stronger doses as
your body develops an immunity towards them.
You may need to try several different types of pain
pills before you find one that works for you, but
there is help available to combat your pain.
So, being the long winded old f#rt that I am, I
suggest you talk to your Dr about starting a program
to find out what you need to help you with your pain,
and by all means avoid straining yourself in ANY way
at all. Even lifting a full pitcher of water can put
strain on your muscles, and should be avoided at all
times.
Please Patty, take all of this information to heart,
and do what is best for you. Do not go into a denial
stage, as that is the worst thing we can do to
ourselves.
Rest, and let someone else do that the things that
cause you pain, and you will be able to function, on a
somewhat limited basis, for many years to come.
Please let me know if you have any questions, and I
will get back to you asap.
From A fellow Suvivor, Class of 49
Jack Babcock

--- BILL AND PATTY WHITTAKER <STUB@...>
wrote:

> HI JACK, PATTY W HERE, I WAS A POLIO VICTIM , WAS ON
> CELEBRIX (MISPELLED)
> LONG TIME, WENT HOME TO MICHIGAN ON VACATION, ABOUT
> HEMORAGED TO DEATH FROM
> IT.NOW I TAKE MORE JUNK, TRY NOT TO ANY MORE THAN
> HAVE TO.. I SWIM THREE
> TIMES A WEEK, I NEED SOMEONE TO TELL ME WHAT THE
> GOOD EXERCISE TO DO. I
> WORKED AS A BARTENDAR UP NORTH AND SALES IN THE
> SOUTH, ON MY FEET ALWAYS,
> NOW I CAN HARDLY WALK.. LOST AN OLDER SISTER TO
> POLIO COMPICATIONS, YES,
> THERE ARE ALOT OF US WHOM NEED HELP.. WISH THERE
> WAS SOMETHING I COULD DO
> TO HELP..MYSELF AND OTHERS.. LATER PATTY W
>
> -------Original Message-------
>
> From: jack wesley
> Date: 03/23/06 00:22:06
> To: bluerollersppssupport@yahoogroups.com
> Subject: Re: [BlueRoller's PPS Support] (no subject)
>
> Try talking to the people at IPPSO chat. They have a
> lot of people who have been on pain meds for a long
> time.
>
>
> --- michael brandon <msbpacific@...> wrote:
>
> > Hello,
> >
> > Does anyone have any info on pain management meds?
> > My
> > DR. has me on a pain med but is not really
> informed
> > about the chronic pain associated with PPS. Any
> > advice
> > would be appreciated
> >
> > --- Ekenney1@... wrote:
> >
> > > bluerollersppssupport@yahoogroups.com
> > >
> > >
> > > [Non-text portions of this message have been
> > > removed]
> > >
> > >
> >
> >
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