******************************************
***********************************
NO
MEETINGS IN JULY AND AUGUST
**************************************
CONTENTS
My Adventures
Ask Dr. Perry – Revised
“Hello….”
Polio Survivors Pressured to Sign
Do-Not-Resuscitate Orders
Yes, I’m a Senior Citizen
Focus on Eyes
You Must Know *77
The Commonwealth Games
- A Follow-up Letter from Marcia
PPS and Numb Hands
Travel in
Book Release
************************************
MY ADVENTURES
No real adventures to report this time – I did travel to
HOWEVER, I am experiencing some new medical problems – carpal tunnel
syndrome – has been giving me pins and needles and numbness of the finger tips,
especially in the right hand. The left
hand just gets some pins and needles.
Tried getting an over-the-counter brace for the right hand and found
they were too big… you see, the right hand is a polio hand. Found out I needed a child’s brace which I
got from my
************************************
With Jacquelin Perry, M.D.
Reported by Mary Clarke
Atwood
Rancho Los Amigos Post-Polio Support Group Newsletter-May 2006
Editorial assistance by V.
Duboucheron, J. Perry, M.D.
Because of copyright restrictions, the
printed article "Ask Dr. Perry - Revised" cannot be posted on the
Internet. If you would like a copy, please send your request to:
RanchoPPSG
or
FECPPSG Editor’s Note:- This is an excellent article and I recommend
your following through and requesting it from Rancho Los Amigos PPSG.
************************************
Our thanks to
member Bob Barry for the following anecdote.
“Hello…..”
A woman called a local hospital.
"Hello. Could you connect me to the person who gives information about patients. I'd like to find out if a patient is getting
better, doing as expected, or getting worse."
The voice on the other end said,
"What is the patient's name and room number?"
"Sarah Johnson, room
302."
"I'll connect you with the
nursing station."
"3-A Nursing Station. How can I help You?"
"I'd like to know the condition of Sarah Johnson in room 302."
"Just a moment. Let me look at her records. Mrs.
Johnson is doing very well. In fact, she's had two full meals, her blood
pressure is fine, she is to be taken off the heart monitor in a couple of hours
and, if she continues this improvement, Dr. Cohen is going to send her home
Tuesday at noon."
The woman said, "What a relief!
Oh, that's fantastic.... that's wonderful news!"
The nurse said, "From your enthusiasm, I take it you are a close family
member or a very close friend!"
"Neither! I'm Sarah Johnson in 302. Nobody here tells me anything!"
FECPPSG Editor’s Note:- I’m sure that since most of us have been in the hospital at
least once, you’ll find that the above is soooooo
true.
************************************
The following article is thanks to Dr. Mary Westbrook in
Polio
survivors pressured to sign do-not-resuscitate orders
After recovering from pneumonia, 50 year old polio survivor Lilibeth Navarro, was urged by her
doctor to sign a do-not-resuscitate order so it would be on file when she was
next admitted to hospital. In an interview in the Sacramento Bee (
FECPPSG
Editor’s Note:-
Although this was in a newsletter from
************************************
The following was e-mailed to me by a dear friend,
Dr. Jerry Axelrod.
And as much as I hate to,
Sometimes I have to admit.....
YES, I'M A
SENIOR
CITIZEN!
I'm the life of the
party...... even if it lasts until
I'm very good at opening childproof
caps... with a hammer.
I'm usually interested in going home
before I get to where I am going.
I'm awake many hours before my body
allows me to get up.
I'm smiling all the time because I
can't hear a thing you're saying.
I'm very good at telling stories;
over and over and over and over...
I'm aware that other people's grand-children
are not nearly as cute as mine.
I'm so cared for --- long term care,
eye care, private care, dental care.
I'm not really grouchy,
I just don't like traffic, waiting,
crowds, lawyers, loud music, unruly kids, Jenny Craig and
I'm sure everything I can't find is
in a safe secure place, somewhere.
I'm wrinkled, saggy, lumpy, and
that's just my left leg.
I'm having trouble remembering
simple words like.......
I'm beginning to realize that aging
is not for wimps.
I'm sure they are making adults much
younger these days, and when did they let kids become policemen?
I'm wondering,
if you're only as old as you feel, how could I be alive at 150?
And, how can my kids be older than I
feel sometimes?
I'm a walking storeroom of
facts..... I've just lost the key to the storeroom door.
Yes, I'm a SENIOR CITIZEN and I
think I am having the time of my life!
Now if I could only remember who
sent this to me, I wouldn't send it back to them, but
I would send it to many more!
************************************
Reprinted
from
Focus on Eyes
By Dr.
Tedd Mitchell
Within the same week, my 15-year old daughter was fitted for glasses,
and my father underwent surgery for cataracts.
Although their specific problems are quite different, the interventions
both had will distinctly improve the quality of their lives. Those of us with normal eyesight may have a
hard time relating, but we all know the eyes are wonderful and complex
organs. In fact, a significant portion
of our brain function is required just to interpret the information our eyes
provide.
Even small changes in our eyes can
affect how we see. Although there are
many causes of vision problems, the most common one is change in refraction, or
the way light enters the eye.
************************************
The following was sent to us by
e-mail by several of our members. In
addition to e-mailing it to friends, thought it important enough to put into
our newsletter as so many of us do travel by ourselves.
Barbara
YOU MUST KNOW *77
I knew about the red light on cars, but not the *77. It was about
Lauren's parents have always told them never to pull over for
an unmarked car on the side of the road, but rather to wait until they get
to a gas station, etc.
Lauren had actually listened to her parents advice, and
promptly called *77 on her cell phone to tell the
police dispatcher that she would not pull over right away. She
proceeded to tell the dispatcher that there was an unmarked police
car with a flashing red light on his rooftop behind her. The dispatcher
checked to see if there were police cars where she and there weren't,
and he told her to keep driving, remain calm and that he had back up already on
the way.
Ten minutes later 4 police cars surrounded her and the unmarked car behind her.
One policeman went to her side and the others surrounded the
car behind. They pulled the guy from the car and tackled him to the
ground. The man was a convicted rapist and wanted for other
crimes.
I never knew about the *77 Cell
Phone Feature, but especially for a woman alone in a car, you should not
pull over for an unmarked car.
Apparently police have to respect your right to keep going to a safe place
– acknowledge them (i.e. put on your hazard lights) or call *77
like Lauren did.
Too bad the cell phone companies don't generally give you this little bit
of wonderful information.
Speaking to a service representative at **
************************************
The
following story was written by one of our members - Neena Bhandari.
I first met Neena, if I remember correctly, in June
2000 when I was asked to please meet a fellow polio
attending the International Post-Polio conference in
The
Commonwealth Games
The
Commonwealth Games is a multi-sport event held every four years involving the
elite athletes from countries, which were once part of the
While in the
Commonwealth Games about 4,500 athletes participate, in the Olympic Games
approximately 10,000 athletes take part. Like the
Olympic Torch Relay which symbolises Olympic ideal, noble competition,
friendship and peaceful coexistence; the Queen’s Baton Relay symbolises the
unity and shared ideals of the
The
Melbourne 2006 Queen’s Baton Relay was the world’s longest, most inclusive
relay – travelling 180,000kn across 71 nations in a year and a day.
Sydney-based foreign correspondent Neena Bhandari-Ghose, who has polio in her left leg, was chosen
to carry the Queen’s Baton into
When asked by the Lord Mayor how did it feel to be carrying the baton
into
Neena
received the baton from 20 kilometre walker Jane
Saville, who was
The
design and technological features of the baton that made this epic journey
reflect the relay’s efforts to showcase the diversity of the Commonwealth and
unite its communities in celebration of the event. The
elegant, curved form of the baton took its inspiration from the physical form
of athletes arching forward as they strive for success. The 71 larger
lights on the front of the baton indicated the 71 nations of the Commonwealth,
(home to almost one-third of the world’s population) that the Queen’s Baton
visited on its journey to the Games. These progressively lit up as the baton
arrived in each Commonwealth country, symbolising the gathering of the nations
at the four-yearly festival of sport and culture.
The gold and magnesium used in the baton hold special significance to the
people of the State of
Magnesium, often referred to as the ‘metal of the future’, is used in
the front panel of the baton.
The
high-tech baton-tracking technology housed in the baton enabled schoolchildren,
adults, families and friends to pinpoint the baton’s location via the internet,
supported by satellite coverage. The special interactive online baton tracking
features included: baton tracker – using the latest
global positioning system technology, the online tracking device could pinpoint
the exact location of the baton at anytime and indicated this on an online map
of the world which zoomed in to the actual location; baton cam – cameras
mounted in the baton transmitted video footage of key relay moments to this
website. It was 900mm high, 80mm wide and 1500g in weight.
Neena
was one of the journalists on The Ghan train, accompanying the baton from
************************************
In
our March/April 2006 newsletter, we had an article by Marcia Falconer, PhD
entitled Inflammation and PPS.
This article was presented at a PPASS Symposium in
-A follow-up letter from Marcia
Marcia presented new
information on the causes of PPS that piqued the interest of our
delegates. Her paper is our insert in
this newsletter (in FECPPSG’s
March/April 2006 newsletter). She is
a retired Virologist who worked in the field of microbiology in laboratories in
Hi
Again
Thank
you for inviting me to present a workshop at the PPASS Symposium. I enjoyed our phone chat but I left out
something important when we spoke last night.
You mentioned the article I wrote, along with Eddie Bollenbach,
about non-paralytic polio and PPS and we spoke a bit about this, but I left out
some very important information.
We
figure that 85 to 90% of people who had polio went undiagnosed. At least 10% of these had some neuronal
damage! These people are at risk for
developing PPS but will have no clue as to what it is! I was in this category but was lucky enough to
be diagnosed as previously having acute polio (strain 2) by a polio antibody
titer test some 15 years after the acute illness. However even I had no clue what was happening
when the symptoms of general fatigue out of proportion to effort expended and
new muscle weakness and pain started appearing in 1985.
Eventually,
because of internet searches, I found the Lincolnshire Post-Polio Network
(LPPN) website and discovered that my symptoms exactly matched those of
classical PPS! A light bulb went on over
my head – almost literally – as I remembered the long-ago polio diagnosis. It added up but I remained unconvinced that
my relatively mild case of polio was involved.
After all, I recovered completely (or shall we say 97%) within one year
after falling ill. There as one year of
‘odd walks’, many years of ugly, orthopedic shoes, a few incidents with gym
teachers telling me I had to accomplish things I couldn’t … and always
severe fatigue after doing anything physically stressful.
The
fatigue, identical to PPS fatigue, but lasting for less time – plagued me all
my life. My mother thought I was lazy –
even I never understood why I got so much more tired than my friends who had
done the same things – and more – than I had!
Now I realize it was because I was using polio-damaged neurons.
But
back to the onset of PPS and my realization that it could be connected to
previous polio Hillary Hallam (now Hillary Boone) was
a literal life-saver. Corresponding by
e-mail, she convinced me that I indeed had PPS but I still needed to understand
WHY a person, essentially fully recovered from polio, should come down with
post-polio syndrome 36 years after being ill!
This is why I began my research.
The
research led to understanding that neuronal damage, as severe as that found in
classical paralytic polio, was not uncommon in cases of undiagnosed
(non-paralytic) polio. At the same time,
I realized that I had a duty to make this knowledge known to people and wrote
the article about PPS and non-paralytic polio.
I knew it was important to educate doctors, because they are the first
line of information for people with PPS symptoms but no known history of
polio. It is STILL important to educate
doctors about this – alas the message has only reached a few.
It
was equally important to educate people who had known,
diagnosed, paralytic polio. When there
was one case of acute polio in a family, there were always more cases of
undiagnosed polio among family members, relatives and close friends! This meant that polio survivors should look
among their family and childhood friends and notice if anyone had symptoms of
PPS! If they find with severe fatigue or weakening muscles, they should tell
their relatives and/or friends to suspect a history of undiagnosed polio and
subsequent PPS.
And,
of course, it was important to educate physical therapists for the same
reason. People coming to doctors
complaining of muscle weakness and fatigue were – and still are – often
diagnosed with chronic fatigue syndrome (CFS).
The current treatment for this is increasing amounts of exercise. This works well for FS but can be disastrous
for PPS! So if physical therapists saw
somebody reacting very poorly to prescribed exercise, the physios
should also suspect PPS – and they would not do this without information about
the link between non-paralytic polio, or undiagnosed polio, and PPS!
All
this started my research into polio and PPS.
It also introduced me to a wonderful community of polio survivors. While the history of our acute illness is
often very dissimilar, the current state of our bodies is not! This fact led me to my next area of research
which is to understand exactly WHAT is causing PPS symptoms and that in turn
led me to discover current research in allied neurological fields about
inflammation and chronic disease.
Once
again I feel it is imperative to let polio survivors, their family and friends,
doctors, and physiotherapists know about this information. It is even more compelling to let people know
because inflammation is involved in all chronic disease, not just PPS. That means that the information impacts
people with heart disease, irritable bowel syndrome, diabetes, arthritis,
cancer and even simple aging!
After
returning from the PPASS Symposium 2006, I realized that I cannot go everywhere
and speak to everyone – I can’t even reach all the PPS groups in Canada, much
less those elsewhere (although I do often go to Australia and speak to PPS
groups there). Still, I am compelled to
reach out with this information. It is
SO important to let people know about these findings because there are things
we can do to minimize inflammation and thereby reduce symptoms of chronic
disease, be it PPS or aging. I have
decided to write a book – and my visit to
SO
… THANK YOU PPASS.
Love,
Marcia
FECPPSG Editor’s Note:- Remember
her original article is in our March/April 2006 newsletter so you can
refresh your “memory” as to what is in it.
Would like to wish Marcia GOOD LUCK in her writing a book and look
forward to reading it….
************************************
The following article is reprinted with the express permission of the
author, RE Van Der Llinden,
originally in the PPS Manager,
PPS and Numb Hands
By RE VanDerLinden 03/05
Numbness in the hands, a possible side effect of PPS,
can result from two common practices. In an attempt to reduce shoulder muscle
use, resting the elbows on armrests can exert damaging pressure on the ulnar nerve. And, a very common problem can result when the
use of assistive devices - canes, crutches, and even furniture - puts pressure
on the wrists, compressing the median nerve. The result is Carpal Tunnel
Syndrome.
Not-so-funny bone
Did you ever bump your elbow and suffer a burning,
tingling numbness in your little finger and part of your hand? The nerve we
call the funny bone is vulnerable to extended pressure as well as sudden bumps.
To avoid damaging this sensitive nerve, Dr. Lauro Halstead recommends using a forearm support device to
take on the weight of your arms instead of using the armrests built into your
chair.
Pain, tingling, or numbness in the little finger side
of the hand is not related to Carpal Tunnel Syndrome.
---
The following is an excerpt from: http://www.ninds.nih.gov/disorders/carpal_tunnel/detail_
carpal_tunnel.htm.
What is carpal tunnel syndrome?
Carpal tunnel syndrome occurs when the median nerve,
which runs from the forearm into the hand, becomes pressed or squeezed at the
wrist. The median nerve controls sensations to the palm side of the thumb and
fingers (although not the little finger), as well as impulses to some small
muscles in the hand that allow the fingers and thumb to move. The carpal tunnel
- a narrow, rigid passageway of ligament and bones at the base of the hand 3Æ4
houses the median nerve and tendons. Sometimes, thickening from irritated
tendons or other swelling narrows the tunnel and causes the median nerve to be
compressed. The result may be pain, weakness, or numbness in the hand and
wrist, radiating up the arm. Although painful sensations may indicate other
conditions, carpal tunnel syndrome is the most common and widely known of the
entrapment neuropathies in which the body's peripheral nerves are compressed or
traumatized.
What are the symptoms of carpal
tunnel syndrome?
Symptoms usually start gradually, with frequent
burning, tingling, or itching numbness in the palm of the hand and the fingers,
especially the thumb and the index and middle fingers. Some carpal tunnel
sufferers say their fingers feel useless and swollen, even though little or no
swelling is apparent. The symptoms often first appear in one or both hands
during the night, since many people sleep with flexed wrists. A person with
carpal tunnel syndrome may wake up feeling the need to "shake out"
the hand or wrist. As symptoms worsen, people might feel tingling during the
day. Decreased grip strength may make it difficult to form a fist, grasp small
objects, or perform other manual tasks. In chronic and/or untreated cases, the
muscles at the base of the thumb may waste away. Some people are unable to tell
between hot and cold by touch.
How is carpal tunnel syndrome
diagnosed?
Early diagnosis and treatment are important to avoid
permanent damage to the median nerve. A physical examination of the hands,
arms, shoulders, and neck can help determine if the patient's complaints are
related to daily activities or to an underlying disorder,
and can rule out other painful conditions that mimic carpal tunnel syndrome.
The wrist is examined for tenderness, swelling, warmth, and discoloration. Each
finger should be tested for sensation, and the muscles at the base of the hand
should be examined for strength and signs of atrophy. Routine laboratory tests
and X-rays can reveal diabetes, arthritis, and fractures.
Physicians can use specific tests to try to produce
the symptoms of carpal tunnel syndrome. In the Tinel
test, the doctor taps on or presses on the median nerve in the patient's wrist.
The test is positive when tingling in the fingers or a resultant shock-like
sensation occurs. The Phalen, or wrist-flexion, test
involves having the patient hold his or her forearms upright by pointing the
fingers down and pressing the backs of the hands together. The presence of
carpal tunnel syndrome is suggested if one or more symptoms, such as tingling
or increasing numbness, is felt in the fingers within
1 minute. Doctors may also ask patients to try to make a movement that brings
on symptoms.
Often it is necessary to confirm the diagnosis by use
of electrodiagnostic tests. In a nerve conduction
study, electrodes are placed on the hand and wrist. Small electric shocks are
applied and the speed with which nerves transmit impulses is measured. In electromyography,
a fine needle is inserted into a muscle; electrical activity viewed on a screen
can determine the severity of damage to the median nerve. Ultrasound imaging
can show impaired movement of the median nerve. Magnetic resonance imaging
(MRI) can show the anatomy of the wrist but to date has not been especially
useful in diagnosing carpal tunnel syndrome.
Thanks to the National Institute of Neurological
Disorders and Stroke and the National Institutes of Health for the above
information.
---
Carpal Tunnel Syndrome (CTS) is a
common complication to PPS.
I asked respected UCLA neurologist and PPS expert,
Dr. Susan Perlman:
Dear Dr. Perlman,
I occasionally get a question that requires a
professional answer. Maybe you can help me with this one:
More than one reader has told me about having had
surgery for Carpal Tunnel Syndrome but getting no relief from the symptoms. I'm
aware that once the nerve damage is done, symptoms can be expected to continue,
though should not worsen. However, some suggest that they may have been
misdiagnosed because of the PPS complication.
For me to fully respond, I need confirmation of the
following points:
Question 1: Use of manual assistive devices can
contribute to CTS. A power chair is
a better alternative.
Dr. Perlman: CORRECT, but maybe just