Hi Jack, Thanks for the information in your message to Patty.

I am also a "49er" now living in California. I thought many of my
problems were due to all the doctors I met making the brilliant diagnosis
that "It is just your old polio acting up." This is usually delivered
with a smirk regardless of the changing causes. I now know this means
I've just met another average lazy doctor who takes the first excuse to
justify doing nothing to help a patient with no status worthy of his
interest.

In 1974, I was hit by a drunk driver who totalled my car (although I was
recognized by the Highway Patrolman who came to the scene as having done
exceptionally well avoiding the certain death that should have resulted
from his negligence). The windows all shattered, and with no seat belts,
I had bruises all over, and glass in my head and arm. The ambulance
driver took me to the hospital with my passenger only because he didn't
want to leave me alone on the road.

I took the glass out of my arm in the bathroom of the emergency room, but
I got scared and asked for help with the glass in my head. Turns out
there is some kind of behavioral guideline used to evaluate injuries more
easily than listening to the patient, checking for injuries consistent
with the situation, or even examining the patient. Because I was a young
woman who was calm, they thought I had no problems they should worry
about. A head wound wasn't worth checking out. Basically I didn't have
typical easily recognized reactions they expected, so I wasn't hurt. No
one seems to recognize the 'ultracalm' state I use to defend myself from
hysteria. I have a lot of practice at calmly dealing with trauma and
disabilities. This is not the first time I've ever sprained an eyelash.

At my first outpatient exam in 1949, I was told, "You life will be very
difficult. You are a very weak person if you ever let anyone know how
hard it is or how much you are suffering. And don't bother to ask
doctors for help because we don't know what to do. You just be patient
and wait 10 or 15 years and we will figure this out." Of course, since
we were all patient and long suffering, we were easy to ignore and no one
bothered to figure anything out. We were ignorable and 'in valid.'

Seems like many of us got a similar version of this message and proceeded
with great courage to handle our own problems quietly, down play any
disabilities, cover up our problems, and ask very shyly for a little help
when we couldn't bear things any more. It doesn't occur to the medical
professionals that anyone could be as brave and courageous as we are. No
one guesses how hard we work or how little we complain. No one looks
beneath the surface.

There also seems to be a lot of misinformation like, "Those polios
complain about every little thing!" I even heard one doctor, who was
supposed to be the best hope we (post polios) had, tell his intern right
in front of me; "Make sure you set aside only one day a month for those
polios, or they will take up all your time!" To me this sounded like the
need was very great and someone could have devoted a whole practice to
helping us... Of course, this doctor was little help to me and made
excuses for why I might be having terrible the back spasms and agony
caused by a '83 fall which evidently reinjured the same untreated
ligament tear from the '74 accident.

With no help again from the medical profession, I began to seek out
alternatives. I got support from chiropractors and acupuncturists. I
finally came across Homeopathic remedies in a health food store, and went
to the Hahneman Clinic in Berkeley, CA. According to Homeopathy, post
polio symptoms are slow poisoning. This seems to be caused by toxins in
the environment that polios don't eliminate from their bodies as
effectively or efficiently as 'normal' people. All the things which are
called SAFE because they don't obviously impair a very healthy 30 year
old man, are not so safe for women, children, older people, etc.

They gave me a heavy dose of Carbo-veg (charcoal) which clean out my
system and made me feel better than I had in years! (Certainly better
than I had since they began 'safe' Malathyan (sic?) spraying against the
medfly infestation threatening or agricultural industry. Strange that
this safe spray took the paint off cars it landed on. Health care
professionals and schools were instructed not to accept any reports of
ill effects, like the constant elevated temperatures, or fevers that
children got after the spraying...)

That helped me for years until the fatigue caught up with me again.
Fortunately, a student in my classroom gave me Strep Throat 4 times in 2
months. In desperation, a doctor gave me SUPRAX, saying "This will kill
anything." By this time the acupuncturists had figured out that I was
very sensitive to medication. They taught me to use 1/4 of the normal
dose, since my body didn't seem to eliminate the excess like most people
would. I just needed a little help! I used this knowledge to protect
myself, and the lower dose removed the strep and the fatigue!

I happily reported this to 3 doctors who were furious that I would think
it would help polios! Suprax did cause manageable morning diarrhea for
several years, but it was preferrable to the fatigue! Turns out some
doctor gave a strong dose of Suprax to an otherwise healthy man and it
caused almost terminal diarhea, so it was not used much again. Never
occurred to anyone to use a lower dose or apply it to a problem the drug
company didn't recommend it for.

I suspect the new weaknesses we are attributing to post polio are
actually toxic reactions to substances regarded as safe. Many of the
drugs we are given also cause problems because we don't clear out our
systems effectively.

I have also witnessed a lot of normal doses being given to people who
might benefit from lower doses. An Anesthesiologist verbally attacked me
for being sensitive to medication. He just wanted to give everyone the
same dose. I thought, "Wait a minute. Isn't he supposed to have studied
dosage? Why should everyone take daily medicine to become average so he
won't have to think or calculate individual dosages? Why is it my
responsibility to be normal so he can be lazy?" No wonder so many older
people have trouble following operations! They are given the standard
dosages with out recognizing that metabolism slows with age and too much
medication can be fatal!

I suspect our nerves seem to die out because we are poisoned. There are
so many manufactured items in common use that are not as safe as they
seem. There a gases being given off by plastics, foams, and MDF that
shut down fragile lungs. Tiny particles also enter our bodies and
irritate sensitive systems.

I retired after 36 years of teaching thinking I was aging. Turned out
the new materials used in renovating our classrooms were giving off gases
that made me tired. No wonder so many children are sick so often!

I was so exhausted that 17 days after I retired I fell in my yard and
knocked the lens and Iris out of my eye. I barely survived the poisoning
by heavy doses of medication given to me to slow the healing of my Iris
so it wouldn't heal rigid, but I had no Iris left to heal. That's
another hairy story.

I agree that we should conserve to preserve, use equipment to extend or
energy, and get more rest, but we also need to lower dosages and
encourage our bodies to clean themselves better. I am getting very fond
of vegetables and fruits I ignored before. I'm trying to use organic or
natural foods, and natural materials when I have a choice. Even avoiding
Teflon coatings and aluminum pans have helped. There are so many things
on the market that have not been adequately tested. They look good, but
there may be bad effects we will pay for later. Polios seem to be the
'canaries in the mine' of the medical profession, but they don't want to
recognize us or see the value we provide.

An amazingly aware and compassionate brace maker once told me that the
doctors hated polio patients because the effects are so individual. They
had to strain their brains to find treatment when most other illnesses
can be easily generalized. Most doctors want a pill they can throw at
many people with out thinking.

As a former teacher I tend to think that no knowledge gained is ever
wasted. If the true needs of polio survivors had been recognized and
addressed, it could have helped with many other disabilities. What is
now done for accident victims and veterans could have helped us lead much
easier lives. What could have been done for us could have helped more of
them too. Recognizing metabolic changes can save many lives. Realizing
that overmedicating, while enriching doctors and drug companies, does not
serve us well, could save many lives and reduce disabilities.

I am shocked at how willing doctors seem to be to let lower status
patients struggle with problems that can be relieved for more important
people. They seem to want us homebound where no one will see their
failures. Sorry, I'm so bitter. It seems to help to get this out. I
just hope that other people will be better able to protect themselves and
maybe get more effective help. Blessings, Sharis

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