Our
January/February newsletter had an article Coping with the Late-Life
Complications of Polio, reprinted from the Johns Hopkins Medical Letter,
January 2001, Health After 50.
Richard Daggett, of Polio Survivors Assn, in Downey, CA raised some
issues with respect to the article – below is his letter to the Medical
Editor and its
attachment.
*******************************
December
20, 2000
Simeon
Margolis, M.D., Ph.D.
Medical
Editor: Health After 50
550
N. Broadway, #1100
Johns
Hopkins
Baltimore,
MD 21205
Dear
Dr. Margolis,
In
the January 2001 issue of Health After 50 is an article on coping with
the late effects of polio. We appreciate the public awareness that articles such
as this bring to this often devastating condition. I am, however, troubled by
several statements included in this otherwise excellent
article.
The
article mentions spinal fluid taps as a diagnostic tool. To my knowledge spinal
fluid taps are not used except as a research tool. The diagnosis of post-polio
syndrome is a diagnosis of exclusion. The physician should establish a history
of acute polio, and then evaluate the extent and severity of polio residuals. If
the causes the new symptoms do not appear obvious, the physician should conduct
diagnostic tests to exclude other conditions considered in the diagnosis. This
rarely involves spinal fluid analysis.
In
the segment about exercise the article states, “tiredness and pain persisting
beyond an hour indicate that muscles have been overused.” I believe this to be
overly generous. Pain should be avoided, period. Pain is a symptom of injury. If
it hurts you shouldn’t do it. As for “tiredness”, or more properly, fatigue,
there are many variables. Even with variables, however, exercise that causes
fatigue of over an hour is probably too much exercise.
I
find most troubling the statement that advocates “supplemental oxygen” for
“breathing problems”. This is contrary to good medical management of
neuromuscular induced pulmonary insufficiency, and it could result in severe
complications over time. I have attached a copy of an article by E. A.
Oppenheimer, M.D. that addresses my concerns.
Sincerely,
Richard
L. Daggett, President
Polio
Survivors Association
Member,
American Academy of Home Care Physicians
562
/ 862-4508
562
/ 862-5018 fax
richard@polio-association.org
Editor’s
Note:- Richard sent the above letter and below
article to me through e-mail. Our
thanks to Richard for allowing us to reprint both his letter and Dr.
Oppenheimer’s article.
Barbara
– Here is the attachment that accompanied my letter to Health After 50. This
article will appear in the January 2001 newsletter of the Rancho Post-Polio
Support Group.
A
Follow Up on the Dangers of Oxygen
By
E.A. Oppenheimer, MD
Physicians
usually see two types of pulmonary impairments. The most common is Chronic
Obstructive Pulmonary Disease (COPD), i.e. emphysema, asthma, chronic
bronchitis, etc. COPD is a condition where the lungs or airways are damaged but
the respiratory muscles function normally. The second is hypoventilation
(underventilation) due to neuromuscular disease, i.e. polio, Muscular Dystrophy,
ALS, etc. In neuromuscular hypoventilation the lungs are healthy, but weakened
respiratory muscles impair the movement of air in and out of the
lungs.
With
COPD the problem is with oxygen exchange. The damaged lung tissues interfere
with the transfer of inhaled oxygen into the bloodstream. The problem with
post-polio and other neuromuscular diseases is the inability to move air
(oxygen) effectively. Since COPD is so common, many physicians are used to
treating a low oxygen saturation (even when there is an elevated CO2) with
oxygen, not considering the possibility that the problem is truly
hypoventilation rather than COPD. Although modern blood gas equipment often
automatically calculates the alveolar gas equation, many MDs and RTs no longer
think in these terms and don’t remember when or how to use this
information.
Both
COPD and hypoventilation due to neuromuscular disease result in a decrease of
arterial oxygen levels as the problems get worse. If the doctor or respiratory
therapist uses the “alveolar gas equation” to check the arterial blood gas (ABG)
data in COPD patients it will show a wide alveolar to arterial oxygen difference
due to the lung damage (ventilation:perfusion mismatch). But in post-polio
hypoventilation the alveolar to arterial oxygen gradient is normal -- the
calculation using the alveolar gas equation shows that all of the drop in oxygen
is due to underventilation, due to the increased alveolar CO2. This is often
referred to as CO2 retention.
Most
physicians know that you need to be careful with oxygen administration in COPD.
Too much can turn off respiratory drive and result in death. The body recognizes
the higher oxygen level and tells the breathing muscles to slow down or breathe
shallower. It’s as if the nervous system is saying, “You’ve got plenty of
oxygen. Slow down. You don’t need that much.” But COPD patients need some oxygen
supplementation because of their problems with oxygen transfer.
Dr.
Peter Gay (Pulmonary physician at the Mayo Clinic) published a review of similar
problems when oxygen is given to people with neuromuscular disease. Already
weakened respiratory muscles will be getting the wrong signals. The respiratory
drive will turn off and death can result.
If
COPD patients are given assisted ventilation without oxygen, the low oxygen
problem persists. If a post-polio patient with low oxygen saturation is given
mechanical ventilation, the oxygen level returns to normal without adding
oxygen. This is because the post polio problem is underventilation. These
patients respond to assisted ventilation alone. So why give the wrong treatment
and risk a bad out come? The answer is: You shouldn't! You should use
mechanical ventilation to correct the underventilation, and avoid mixing up
treatment of post-polio and COPD!
****************************************
UPCOMING EVENTS
March 2
– 4: ABILITIES
EXPO at the Miami Beach Convention Center.
March
17: POPS (power
Over Polio Support) group,
The Villages… Luncheon Seminar at Hacienda Hills Country Club, $12.95. Speakers:- Lynda Knight, area representative for
March of Dimes and Dr. Gudni Thorsteinsson, Director of Post-Polio Clinic, Mayo
Clinic, Jacksonville, FL – Make $12.95 check payable to HACIENDA HILLS COUNTRY
CLUB and send same to: Don Suttle,
1738 Campos Dr., The Villages, FL
32159, 352-259-2051. Upon
receipt of your check they will send you directions.
March
24:
ATLANTA COUNTY POST POLIO SPT GRP hosting
its “Fifth Annual Polio Educational Symposium” in Egg Harbor Twp, NJ. For further information call Linda at
609-407-9180.
March
24:
CENTRAL VIRGINIA POST POLIO SUPPORT GROUP will
have Mary Ann Keenan, MD from Einstein Medical Center, Philadelphia, PA as their
speaker. Call Henry Holland at
804-288-8295 or e-mail him at Henry4FDR@aol.com.
April 11
– 14: ROOSEVELT WARM SPRINGS
INSTITUTE FOR REHAB-ILITATION is
having its first reunion for polio survivors who were treated at Warm Springs
and for therapists who worked there.
Call 706-655-5233 or e-mail
emmoreland@dhr.state.ga.us.
May 19:
TRIAD POST POLIO GROUP, INC., Greensboro, NC will be hosting a conference There
is No More Time to Waste with Richard L. Bruno, Ph.D. For further information call Jenny
Danielson at 336-373-1122 or e-mail her at:
azvwis@aol.com.
****************************************
The
following article on author Arthur C. Clarke was e-mailed to us by many of our
members. I dare say that the
majority of us have enjoyed his writings.
Also, it just points out, once more, that we polios come in all shapes,
sizes and professions…..
Post-polio syndrome affects
author
COLOMBO, Sri Lanka (AP) - The year 2001 got off to a
painful start for science fiction writer Arthur C. Clarke, who spent New Year's
Day resting. Clark, author of "2001: A Space Odyssey," suffers from post-polio
syndrome, a condition characterized by fatigue and muscle and joint pain. It can
strike polio survivors anywhere from 10 to 40 years after their recovery from
polio. Clarke had the disease in 1959. "It is really painful; I can't stand up,"
Sir Arthur said from his home Monday. "This is the first time that I have had
this severe
pain." Clarke, 83, predicted space travel before rockets were
tested and foretold computers wreaking havoc with modern life. His "2001: A
Space Odyssey" appeared as a novel and a movie in 1968. It is one of scores of
fiction and nonfiction works he has produced in a career that began in 1959.
Just
thought you would like to know that despite the PPS problems reported
above,
Clarke at 83 is still going strong. As reported in the AP article
below. He should be an
inspiration to all polio survivors. I will be happy to be doing as well
when I'm 83.
http://www.cnn.com/2001/books/news/01/02/clarkes.odyssey.ap/index.html#r
Arthur
C. Clarke looks back on '2001' -- and other visions of his time
January
2, 2001 Web posted at: 11:59 AM EST (1659 GMT)
COLOMBO,
Sri Lanka (AP) -- .......
Futuristic
fantasy and hard-nosed science .
Although
he uses a wheelchair due to complications from polio he contracted
in Sri
Lanka in the 1960s, the 83-year-old Clarke looks more regal than
feeble as
he receives a visitor at his home in Colombo a few days before 2001 dawns.
Barefoot in a blue Hawaiian shirt and coffee-colored
sarong.
****************************************
This
article was e-mailed to me by Marion Schoeller, in CA – Marion was originally part of the Orlando PPSG
but has given up FL for CA and a new life which she is enjoying
greatly.
RV
Touring Meets the Special Needs of Disabled Travelers
RVers
with special needs are finding that RV travel is perfectly suited to
giving
them the mobility and level of convenience they need. The Recreational Vehicle
Industry Associa-tion reports that some 15 RV manufacturers offer special needs
RVs and conversion vans, designed and built with features that make it possible
for those with mobility and
health problems to travel
comfortably. Modifications
can include wheelchair lifts or ramps,
widened entrances, conveniently located controls, roll-under sinks, lower
kitchen counters and cabinets, roll-in showers, longer faucet handles and brighter lighting.
Campgrounds
are also adapting for the needs of disabled travelers, with many
offering
wide, level, paved sites that are easily accessible by wheelchairs,
walkers
or electric scooters. Some campgrounds are offering recreational
opportunities and food services for special needs RVers, and some even
provide special classes on health and fitness for disabled travelers or have
medical support on the property.
RVIA
offers a directory with information on RV accessibility for the
disabled.
Get your copy by writing: RVIA, P. O. Box 2999, Dept. P, Reston, VA 20195 or
calling 703-620-6003. More information for disabled RV travelers is available by
writing the Handicapped Travel Club, 5929 Our Way, Citrus Heights, CA 95610 or calling 916-966-7090.
****************************************
The following article was
first sent to us by Larry Hanna, Holbrook, NY. Many others also e-mailed it to me.
QUESTIONS
IN THE HISPANIOLA POLIO OUTBREAK
The
Associated Press, CONSTANZA, Dominican Republic
SANDY
TORRES sits in a wheelchair in the front of his sixth- grade class
learning
anatomy, his body damaged forever by a disease that has scientists
scrambling
for answers.
Sandy,
13, came down with polio in September, nine years after scientists
believed
it had been eliminated from the Western Hemisphere. His mother said he was never
vaccinated, because she didn't know he needed to be.
"It's
not easy watching your child, who ran and played like all the other
children,
and now he can't walk," Sylvia Altagracia Nunez said.
Sandy is
one of six confirmed cases in the Dominican Republic.
There is
a seventh in Haiti, which shares the island of Hispaniola, and 15
suspected
cases are being investigated by local health workers, the U.S.
Centers for
Disease Control and Prevention and the Pan American Health Organization based in
Washington, D.C.
The
outbreak indicated that the health care systems failed to follow through
on a
basic vaccination program, and it also raised larger concerns about
the
worldwide effort to eradicate polio.
For the
victims, the questions are simpler-and harder to face. Will 3-year-old Erika Pimentel, who now
drags herself across the floor with her hands, ever be able to run around the
neighborhood, tiring her mother out like she used to? How will 6-year-old
Alejandrina Arismendy, now unable to stand on her own, make it down the steep
hill outside her home to school?
Polio is
a highly infectious disease that usually strikes children under 5.
It
damages the spinal cord and brain, causing paralysis and sometimes death. It is
transmitted by ingesting food or water contaminated by fecal matter of an
infected person.
So far,
investigators have determined that the outbreak occurred because
thousands of
children were not vaccinated, making both countries a prime breeding ground for
a vaccine-derived mutation.
In
Constanza, a remote town where the first cases appeared, officials
estimate
only 20 percent of children had received all three doses of the
vaccine, said
Socorro Gross, Pan American's representative here.
"All of
the people involved either weren't vaccinated, or were only vaccinated
once,"
Gross said. And the government wasn't pushing the vaccine or even
making it
available to all clinics.
"I had
the vaccine here in a refrigerator, but it was old. I couldn't use it,"
said
Dr. Antonio Santos,
director of Constanza's public hospital.
In an
immunization drive in recent weeks, about 25,000 children -
more than 95 percent -- in Constanza and the surrounding region
have been vaccinated, Gross said. A
nationwide vaccination campaign was scheduled earlier this month. Haiti plans a vaccination blitz
next month.
The
outbreak raises larger questions about the campaign to eliminate
polio:
whether vaccinations can ever be stopped, and about the type of
vaccine used in most countries. The World Health Organization hopes by 2002 to
eliminate wild polio from the few countries in Africa and Asia where it still
exists.
But
after that, polio would still exist in the children who received the oral
vaccine, a relatively safe version of the live virus. If the vaccinations
stopped, those children might pass the disease on to unvaccinated children. And if the vaccine version of the
disease circulated long enough in the population, it could mutate back into the
deadly version, as apparently happened here. The only other such case occurred
in Egypt in the 1980s, infecting more than 30 people.
"This is
a real problem, because it highlights the point that we cannot predict what
polio virus will do," said Dr. Vincent Racaniello, a professor of
microbiology at Columbia University.
Racaniello
long has argued that the effort to eradicate polio cannot end when the wild
virus has been eliminated. He
is among those who believe health workers will have to switch from the oral
vaccine, called Sabin, to the older, costlier Salk vaccine that has to be
injected but uses a killed strain of the virus that cannot mutate.
Pan
American officials are resistant to the idea, saying Salk is not only too costly
but too difficult for developing countries, because it has to be administered by
a professional.
In
addition, immunity from the oral Sabin vaccine is contagious, giving what
experts call "herd immunity." As long as a high enough percentage of children
are vaccinated directly, the few who are not can get the immunity from the rest.
But the
United States changed the protocol for polio vaccinations in 1997 to include the
Salk vaccine, to prevent mutations. The Hispaniola outbreak does not threaten
countries like the United States, where almost all children are vaccinated and
therefore immune to the wild disease and the mutation. For Sandy Torres the real question is
simple. "I ask God when I will be
able to walk again, and if I can continue playing
baseball."
****************************************
This,
too, was sent by one of our e-mail friends, Joan
Swain. We received several others
too.
NY
Times Website - Jan 10, 2001
Statue Depicts FDR in Wheelchair
BY THE ASSOCIATED PRESS
Filed at
12:36 p.m. ET
WASHINGTON
(AP) -- Franklin D. Roosevelt's efforts to conceal his affliction with polio
made some family members skeptical when people started planning a statue
depicting the former president in a wheelchair.
They
eventually agreed that if disabled people saw a monument to a president in a
wheelchair, they wouldn't be ashamed of their own
disabilities.
After
years of protests and complaints, a bronze statue depicting Roosevelt in his
self-designed wheelchair was unveiled Wednesday at a dedication ceremony
featuring President Clinton.
Clinton
said the memorial “exceeded my wildest dreams,” especially for the way it was
designed with the disabled in mind -- situated low enough for those in
wheelchairs to touch it.
“It is
grand and beautiful, all right, but it is so accessible in a way that, I think,
would have pleased President Roosevelt and Mrs. Roosevelt,” Clinton said. “The
power of the statue is in its immediacy, and its reminder for all who touch, who
see, who wheel and walk around, that they, too, are free.”
The
statue joins an existing 7.5-acre monument to the author of the New Deal
featuring shade trees, waterfalls and statues of Roosevelt and his wife,
Eleanor.
“When
you build a memorial, you build it not because the person wanted it, but for the
future -- for generations who didn't know the man and didn't know the era in
which he lived,” said grandchild Ann Eleanor Roosevelt.
Disability
groups raised $1.65 million for the structure, starting with $378.50 from a bake
sale in a New Jersey elementary school. The National Park Service agreed to add
it in July 1998 after numerous protests and complaints.
“It was
a shame, disgrace and embarrassment to have his wheelchair hidden in this
memorial when in fact he used it every day of his life,” said Alan Reich,
president of the National Organization on Disability, which spearheaded the
initiative.
While a
nearby sculpture shows him covered with a cape in a straight chair with two tiny
wheels behind, the new statue vividly illustrates Roosevelt's affliction, which
spanned his four-term presidency.
It
stands at the entrance of West Potomac Park, featuring four rooms where tourists
can explore in chronological order the events of the Roosevelt years, from the
Great Depression to the dawn of World War II.
Lawrence
Halprin, who designed the Roosevelt Memorial, has said the new sculpture will
nicely complement the display, spread between the Potomac River and the rim of
the Tidal Basin.
Few
photos show Roosevelt in a wheelchair, and the media largely granted his wish
not to mention his disability in stories. Some political cartoons even depicted
him as running or hopping over opponents.
“In the
time of FDR, he felt it would not have been politically expedient for him to be
seen often in his wheelchair,” Reich said. “He thought people would take that as
a sign of weakness.”
Sen. Max
Cleland, who also is in a wheelchair after losing both legs and an arm in the
Vietnam War, said even he is amazed at how his political hero
persevered.
“I get
beat up flying,” said Cleland, D-Ga. “One wonders how he did the traveling given
his infirmity. He just kept on going, right to the day of his death. It's just
unbelievable the strength, stamina and drive this guy
had.”
****************************************
This
article ALSO came from e-mail and then from an internet site – forgive me –
forgot who sent it to me.
|
Polio
mutation worries scientists |
|
By
TIM RADFORD, LONDON
Saturday
20 January 2001
A small
group of sick children in the Dominican Republic and Haiti could pose a threat
to one of the World Health Organisation's most cherished plans - the eradication
of the crippling and often lethal disease poliomyelitis, or
polio.
Since
October, there have been 45 cases of paralysis on the Caribbean island of
Hispaniola, six years after the Pan American Health Organisation declared that
polio had been eradicated in the Americas.
Laboratory
analysis of the infections, according to the latest issue of the British science
journal Nature, produced an alarming find: the polio cases may have developed
not from the virus that doctors tried to eradicate, but from a mutated form of
their vaccine.
In 1979,
WHO, charities, scientists and national health groups combined to wipe out one
of humanity's most terrifying scourges: smallpox. In 1988 WHO launched a similar
assault on another virus that replicates only in humans:
polio.
The aim
was to vaccinate every child on the planet by 2000 and declare the virus extinct
by about 2005, a few years after the last recorded case.
The
timetable, however, slipped - interrupted by civil and national wars, natural
disaster and political upheaval. But the cases of polio were reduced to around
2000 last year from 350,000 in 1988.
Teams of
experts and volunteers "swamped" whole regions of Asia, Africa, the Pacific and
South America in an effort to immunise all children on the same day with an oral
vaccine developed by Albert Sabin more than 40 years ago.
The
vaccine was a "weakened" form of the virus, which multiplies and triggers
resistance against itself, before spreading into the local water supply; polio
is a waterborne disease. The theory was, in places with poor hygiene, any
children who missed immunisation would "catch" the weakened virus rather than
the dangerous one, and be immunised as a result.
But,
according to Nature, seven new cases of polio have been confirmed on the island
of Hispaniola: six in the Dominican Republic, and one across the border in
Haiti.
Their
discovery led the US Centres for Disease Control in Atlanta, Georgia, to
conclude that they were caused by a mutation in the vaccine. That is, the
weakened version had not only regained its virulence, it had recovered the
ability to spread the infection from person to person.
The next
step for WHO scientists is to work out how it happened. There have been very few
such cases in four decades of oral vaccination.
Only one
child in five in the Constanza region of the Dominican Republic received any of
the three doses needed for immunization.
"My
assumption is that this is an unusual event," Donald Henderson of Johns Hopkins
University, the architect of the smallpox eradication program, told Nature.
But the
implication is that polio may be more difficult to eliminate than anyone had
thought.
"Clearly,"
Roland Sutter of the Centres for Disease Control said, "this is raising a red
flag."
--- GUARDIAN
****************************************
Again –
from my e-mail, this from my cousin Donna – THANKS, Cuz….
MY FORGETTER
My
forgetter's getting better
But my rememberer is broke.
To you that may
seem funny
But, to me, that is no joke.
For when I'm "here" I'm
wondering
If I really should be "there."
And, when I try to think it
through,
I haven't got a clue!
Oft times I walk into a room,
Say
"what am I here for?"
I wrack my brain, but all in vain.
A zero, is my
score.
At times I put something away
Where it is safe, but, Gee!
The
person it is safest from
Is, generally, me!
When shopping I may see
someone,
Say "Hi" and have a chat.
Then, when the person walks away
I ask myself, "Who's that?"
Yes, my forgetter's getting better
While
my rememberer is broke,
And it's driving me plumb crazy
And that isn't
any joke.
CAN YOU RELATE???
Editor’s
Note:- I know I can definitely
relate…..
****************************************
DUES
FOR 2001:- Please take a look at your mailing
label - on it you’ll see the month and year we
received your 2000 dues, i.e., 01/2000 means it was received in January 2000, so
your 2001 dues is due in January 2001. If your mailing label has the year first
and then the month, i.e., 2000/01 it means that you indicated to us in January
2000 that you wanted to receive the newsletter but was not sending dues. That’s OK as we still believe that
anyone who wants information should receive it – but we do need you to
return the tear sheet with either the “Dues” box checked or the “Keep me on the
Mailing List” box checked.
Your dues covers the supplies we need to send out the information packets to all inquiring about Post-Polio Syndrome, any other correspondence we do, and postage for publicity and for the out-of-country (35) newsletters that we send out. We’re fortunate in that the “Free Matter for the Blind and Physically Handicapped” status takes care of the postage for the over 500 newsletters sent out within the United States. We network with approximately 60 other support groups throughout the United States, Canada, Australia and New Zealand – some 40 of these reciprocate by sending us their newsletters. We receive as many dues checks from our out-of-state members as we do from our Florida members. So, please check your mailing label and return the tear sheet if your date is due. We really need your support now more than ever. Just to keep you advised, in addition to the previously mentioned countries, our newsletter goes to Austria, Brazil, England, France, Germany, Israel, Lebanon, Panama, Portugal, Sweden, Taiwan and Wales.
**********
WHEN YOU
MOVE PLEASE be sure to
send us your new address. Sometimes
the post-office will return the newsletter to us with a “forwarding period
expired” notice on the front with your new address but most of the time they are
just returned to us with “address unknown” on it. SO, if you want to continue
receiving the newsletter it is UP TO YOU to make sure we have your new
address.
****************************************
The
following piece was e-mailed to me by Tom Ringhofer, who is the leader of “Polio
Echo, Inc. of Arizona. I am pleased
to count Tom among my friends.
Thank you Tom for the following:-
THE $20.
BILL
A WELL
KNOWN SPEAKER STARTED OFF HIS SEMINAR BY HOLDING UP A $20 BILL.... IN THE ROOM
OF 200, HE ASKED, "WHO WOULD LIKE THIS $20 BILL?" HANDS STARTED GOING UP.
HE SAID,
"I AM GOING TO GIVE THIS TO ONE OF YOU, BUT FIRST, LET ME DO THIS."
HE PROCEEDED TO CRUMPLE THE BILL UP. HE THEN ASKED, "WHO STILL WANTS IT?" STILL
THE HANDS WERE UP IN THE AIR.
"WELL,"
HE REPLIED, "WHAT IF I DO THIS?" HE DROPPED IT ON THE GROUND, AND STARTED TO
GRIND IT INTO THE FLOOR WITH HIS SHOE. HE PICKED IT UP, NOW CRUMPLED AND DIRTY.
"NOW, WHO STILL WANTS IT"? STILL HANDS WENT INTO THE AIR.
"MY
FRIENDS, YOU ALL HAVE LEARNED A VERY VALUABLE LESSON. NO MATTER WHAT I DID
TO THE MONEY, YOU STILL WANTED IT, BECAUSE, IT DID NOT DECREASE IN VALUE.
IT WAS STILL WORTH 20 DOLLARS."
"MANY
TIMES IN OUR LIVES, WE ARE DROPPED, CRUMPLED AND GROUND INTO THE DIRT BY THE
DECISIONS WE MAKE AND THE CIRCUMSTANCES THAT COME OUR WAY. WE FEEL THAT WE
ARE WORTHLESS, BUT, NO MATTER WHAT HAS HAPPENED OR WHAT WILL HAPPEN, YOU
WILL NEVER LOSE YOUR VALUE, DIRTY OR CLEAN, CRUMPLED OR CREASED, YOU ARE STILL
PRICELESS TO THOSE WHO LOVE YOU. THE WORTH OF YOUR LIVES COME NOT IN WHAT WE DO,
OR WHO WE KNOW, BUT, BY WHO WE ARE. YOU ARE SPECIAL, DON'T EVER FORGET
IT!!"
PASS
THIS ON TO THOSE YOU CARE ABOUT, EVEN THE ONE WHO SENT IT TO YOU. YOU WILL NEVER
KNOW THE LIVES IT TOUCHES, THE HURTING HEARTS IT SPEAKS TO, OR THE HOPE THAT IT
CAN BRING. ALWAYS COUNT YOUR
BLESSINGS, NOT YOUR PROBLEMS.
****************************************
The following article was part of our Conference Packet at our December 2000 conference.
POLIO 2001 – AN
OVERVIEW
By Mary Ann Keenan, M.D. and
Alberto
Esquenazi, M.D.
Acute
Poliomyelitis
Because of effective immunization programs, acute poliomyelitis has become a rare occurrence in most of the world. The last major epidemics in the developed world occurred during the early 1950s.
Poliomyelitis is the result of a viral infection, which attacks the
anterior horn cells of the spinal cord.
The anterior horn cells control the skeletal muscle cells of the trunk
and limbs. All of the anterior horn
cells are affected with the acute infection. This accounts for the diffuse severe
paralysis seen with the initial infection.
A variable number of anterior horn cells survive the initial
infection.
Acute polio is characterized by the sudden onset of paralysis accompanied
by fever, acute muscle pain and often a stiff neck. Paralysis of the respiratory muscles is
life threatening in the acute stage.
When the shoulder muscles are involved, respiratory compromise should be
suspected because of the close proximity of the anterior horn cells controlling
each in the spinal cord. Mechanical
support of ventilation may be required.
The treatment in the acute stage of the disease consists of providing the
needed respiratory support, decreasing muscle pain, and performing regular range
of motion exercises to prevent the formation of joint
contractures.
Subacute
Poliomyelitis
The subacute stage of polio is characterized by the recovery of a
variable amount of muscle function.
Mechanisms of regaining strength include 1) anterior horn cell survival;
2) axon sprouting; and 3) muscle hypertrophy. Although all of the anterior horn cells
in the spinal cord were affected by the initial infection, some will
survive. The average number of
anterior horn cells to survive is 47 percent (Range 12 – 94 percent) as seen
from post-mortem studies. The
pattern of anterior horn cell survival in the spinal cord is random and does not
follow anatomically continuous areas.
The distribution of the paralysis is variable depending on which anterior
horn cells were destroyed.
Additional muscle function is gained during the recovery phase by axon
sprouting. One anterior horn cell
innervates a group of muscle cells.
When muscle cells are “orphaned” by the death of their anterior horn
cell, a nearby nerve cell can sprout additional connections (axons) and “adopt”
some of these muscle cells. A motor
unit is defined as a nerve cell and all of the muscle cells it controls. The axon sprouting which occurs after
polio can result in very large motor units.
The other mechanism by which peoples regain strength after polio is by
muscle hypertrophy. The surviving
muscle cells enlarge in an effort to provide additional needed power. During the subacute stage of the
disease, which may last from 16 to 24 months following onset, the emphasis is on
preventing deformities and preserving function. Splinting and braces are often helpful
to maintain joint position and supplement function.
Residual
Poliomyelitis
It was during the residual stage that the orthopaedic surgeon
traditionally became active utilizing surgical procedures to restore lost
function and provide structural stability.
If the person was still growing, it was important to prevent the
formation of skeletal deformities resulting from the muscle
imbalance.
The person with compromised function of the diaphragm was taught
glossopharyngeal breathing in which air is swallowed into the lungs. This provides sufficient air exchange
for light activities performed while sitting. The person often still required
mechanical support of ventilation while sleeping.
Post-Polio
Syndrome
With the last major polio epidemics in the United States occurring in the
early 1950s, it has become common to see individuals who had polio as a child
now returning complaining of increasing weakness. Many are concerned about loss of
function. Polio has always been
considered a static disease in that the paralysis is not progressive. The increasing weakness has been
attributed to the overuse of muscles already weakened by the polio. Often muscles, which were thought
unaffected, exhibit weakness at a later date. Studies have shown that a muscle must
lose 30 to 40 percent of its strength for weakness to be detected using manual
muscle testing. Gait laboratory
studies have also demonstrated that activities of daily living require more
muscle strength and stamina than were previously appreciated. Polio survivors have traditionally been
encouraged to work harder to regain strength. The concept of “no pain – no gain” has
proven detrimental to the polio survivor because it has encouraged chronic
overuse of their muscles and resulted in further deterioration of function.
Most polio survivors begin to notice the deterioration approximately 30
years after the onset of the disease.
The combination of symptoms varies slightly between people. The diagnosis of post-polio syndrome is
made on the following clinical criteria:
·
A
history of poliomyelitis.
·
A
pattern of muscle weakness which is random and does not flow any nerve root or
peripheral nerve distribution.
·
A
constellation of symptoms indicating decreasing strength and
function.
There are no
tests that are diagnostic for post-polio syndrome. Electromyography can demonstrate the
presence of large motor units resulting from the previous axon sprouting. These findings are supportive but not
diagnostic of polio.
· Increasing
Muscle Weakness
· Severe
Fatigue
· Muscle
Pain
· Muscle
Cramping
· Muscle
Fasiculations
· Joint
Pain or Instability
· Sleep
Apnea
· Intolerance
to Cold
· Depression
Treatment of Post-Polio
Syndrome
The treatment of post-polio syndrome is directed at preserving current muscle strength and preventing further weakness from occurring. Generally, it is not possible to strengthen a muscle that has been weakened by polio. Some gain strength can be seen when chronic overuse is corrected. The basic principles of treatment of post-polio syndrome are:
· Lifestyle
modification to prevent chronic overuse of weak muscles.
· A
limited exercise program incorporating frequent rest periods to prevent disuse
atrophy and weakness.
· Lightweight
orthotics support of limbs to protect joints and substitute for muscle
function.
· Orthopaedic
surgery to correct limb or trunk deformities.
Spine
A common complaint is back pain that usually results from postural
strain. Excessive lumbar (low back)
extension is used to substitute for weak or paralyzed hip extensors. Neck pain is frequently seen also. This, too, is from slowly increasing
weakness. At times the neck muscles
become tight from the strain and can actually press on the brachial plexus
nerves of the arms causing numbness.
This is called Thoracic Outlet Syndrome. It is treated with gentle stretching
exercises of the neck. Both
complaints can be treated by the use of external supports. It is important to relieve the excess
workload from the muscles to prevent further deterioration. For neck pain tilting the seat of a
chair backward 10 degrees is often sufficient to relieve the fatigue of the
posterior cervical muscles from supporting the head. Patient education is essential since
most individuals are reluctant to use braces that they long ago
discarded.
Paralysis of the cervical (neck) spine musculature can result in the
inability to maintain the head erect.
This interfere with performing all other functions including
walking. Fusion of the cervical
spine can correct the problem.
Scoliosis (spinal curvature) is common secondary to paralysis and the
resulting muscle imbalance. It can
be further enhanced if a leg length discrepancy exists. External supports can be used to support
the spine but these often interfere with breathing if the person is dependent on
the use of accessory muscles for breathing. Spinal fusion may be needed to control
the spine adequately. If fusion is
needed, prolonged immobilization post-operatively is to be avoided. Prior to any surgery requiring general
anesthesia or significant sedation, the vital capacity of the lungs should be
assessed to determine the individual’s needs for respiratory
support.
Upper
Extremity
Shoulder:
The shoulder is important for placing the hand in the desired position
for use. The shoulder is totally
dependent on muscle strength for active mobility. Weak muscles about the shoulder can be
made more functional with the use of mobile arm supports for the wheelchair
user. This allows a greater arc of
motion with less muscle strength.
In the ambulatory person who requires upper extremity aids, shoulder
stability is more important and a shoulder fusion may be helpful if there is
sufficient strength of the chest wall muscles. Motion between the shoulder blade and
the chest wall is maintained allowing use of the extremity for tabletop
activities. Shoulder fusion does
restrict the ability of the person to position the hand for bathroom hygiene so
it is undesirable to fuse both shoulders.
Preservation of shoulder strength should be a priority of treatment since
bracing and surgery of the paretic shoulder offer limited improvement. Shoulder weakness is found in 95 percent
of individuals with post-polio syndrome and correlates closely with the amount
of lower extremity weakness present.
Rotator cuff tears are also common.
Individuals with weak legs will use their arms to push up from a chair
and pull themselves up stairs. They
also lean heavily on upper extremity aids while walking. It is therefore important to remove as
many unnecessary strains from the shoulders as possible. This can be done using elevated seats,
motorized lift chairs, elevators or motorized stair chair glides, and optimal
lower extremity bracing. In
minimally or non-ambulatory individuals, an electric wheelchair or motorized
scooter should be prescribed to prevent excessive strain on the shoulder muscles
caused by propelling a manual wheelchair.
Elbow:
The elbow requires sufficient flexor strength to lift an object against
gravity for function. A mobile arm
support can maximize the effectiveness of the muscle strength for the
person. Tendon transfers, such as
the deltoid to the biceps, may also be useful in restoring active
flexion.
Hand:
Opponens paralysis is common in the hand and results in a 50 percent loss
of hand function. A splint used
during the acute and recovery phases is useful to prevent an adduction
contracture. Tendon transfer can
restore Opponens function. The most
muscle transferred is the superficial flexor of the ring
finger.
Paralysis of the small intrinsic muscles of the hand interferes with
function. A lumbrical bar orthosis
will prevent hyperextension of the metacarpophalangeal joints and allow the long
extensors to extend the fingers and open the hand. Surgical capsulodesis (tightening of the
joint capsule) to limit metacarpophalangeal joint extension will accomplish the
same result.
Paralysis of the finger flexors and extensors can be overcome with the
use of a flexor hinge brace if wrist extensor function is present. Tendon transfers can provide the same
result allowing the tenodesis effect to provide grasp and pinch
functions.
Lower
Extremities
Full range of motion of the hip and knee joints is needed for
function. Contractures should be
corrected when possible to permit more effective bracing. Iliotibial band contractures of the
outer thigh are common. This causes
the hip to assume a position of flexion, external rotation and abduction. The knee assumes a valgus (knock-knee)
alignment and the tibia is externally rotated on the femur. Release or lengthening of the iliotibial
band will correct the deformity.
An individual with flail lower extremities can stand using crutches and a
knee-ankle-foot orthosis (KAFO) with the knees locked in extension and the
ankles in slight dorsiflexion by hyper-extending the hips and utilizing the
strong anterior hip capsule for support.
Flexion contractures of the hips or knees prevents this alignment. If trunk support and upper extremity
strength is adequate, the person could ambulate with a swing-through gait for
short distances. This gait has high
energy demands. With time the
posterior knee joint capsule becomes stretched and the knee develops a
recurvatum (back knee) deformity which is painful and can lead to arthritic
degeneration of the knee. A
knee-ankle-foot orthosis (KAFO) will protect the knee and provide improved
stability for walking. If there is
Grade 3 (FAIR) strength in the hip flexor muscles and passive full knee
extension, then the knee joints can be left unlocked for walking. In this case a posteriorly offset knee
joint is used to stabilize the knee and ankle dorsiflexion is limited to minus 3
degrees of neutral dorsiflexion to provide a hyperextension moment to the knee
for stability.
Quadriceps (front thigh muscles) strength is not essential for
ambulation. A strong gluteus
maximus (buttocks) and good calf strength can substitute by keeping the knee
locked in extension. If the calf
strength is inadequate to control the forward motion of the tibia in mid to late
stance, an ankle-foot orthosis (brace) is needed. It is not necessary to fix the ankle in
mild plantarflexion to provide knee stability. This could result in a back knee
deformity from the hyperextension push on the knee joint. An equines (toe down) position of the
foot inhibits forward momentum and limits step length by preventing body weight
from rolling over the forefoot prior to contact of the opposite leg with the
ground. When good hamstring (back
of thigh muscles) function is present, two of these muscles can be transferred
forward to the quadriceps tendon to provide dynamic knee
stability.
Muscle imbalances in the foot can lead to deformity. When muscle imbalances exist, tendon
releases or transfers should be considered prior to the development of fixed
deformities. Equinus (toe down)
contracture of the ankle is very common.
This results in genu recurvatum (back knee). The equines should be corrected by
Achilles tendon (heel cord) lengthening.
Accommodating the toe down posture by using an elevated heel on the shoe
is not a good solution since this places excessive stress on the calf muscles to
control the leg.
An Achilles tendon lengthening is frequently needed to correct an equines (toe down) contracture of the ankle to permit adequate bracing. When a cavus foot (very high arch) deformity is present, this causes forefoot equinus, which also limits bracing. If no fi