The
November Newsletter will be at the following web address.
http://home.iag.net/~bgold/polio.htm
*******************************************
A SHANA
TOVAH (HAPPY NEW
YEAR),
and A
CANDY FILLED HOLLOWEEN
****************************************
September 16th
-- Georgia Morgan of SuperMed – Topic “Will They Pay”
November 18th -- Joan
Bova of Central Fl Legal Services will do a presentation on
Fair
Housing and How it Applies to the Disabled Community.
January
20th, 2002 -- NEW YEAR’S
LUNCHEON
*************************************
The speaker for our
September meeting is Ms. Georgia Morgan of SuperMed, Ormond Beach. Her topic “Will They Pay” will tell us
exactly what Medicare and Medicaid will and will not pay for with respect to
manual wheelchairs, electric wheelchairs, and scooters. Any questions you have regarding these most
important assistive aides will, hopefully, be answered.
****************************************
Reprinted from Polio Heroes of Tennessee, February 2001
ORTHOPEDIC
INJURY
It pays to be the expert in your disease. To know what to do, and more importantly, what not to do, in the vent of an accident or injury can save you and your doctor anxiety, frustration and pain… Knowing how to direct your first aiders or rescuers is also of upmost importance.
THE FIRST RULE OF FIRST AID IS: DON’T PANIC!!!
Remaining calm prevents the wrong thing being done in a panic. Accidents are never planned. One moment you are saying, “What a beautiful day!” The next second… SPLAT!!! The pain from everywhere hits! Like a tuning fork, radiating pain to all parts of your body, so that it sometimes takes minutes to determine where the injury actually is.
DON’T TOUCH
ME!!
Well meaning bystanders will immediately try to pull
you up. Firmly, but calmly, instruct
them to let you alone for a minute so that you can determine how you can move
or if you should be moved at all. If
someone is present that knows your reaction to injuries, instruct them to
reassure the bystanders.
ASSESS YOUR INJURIES.
Determine if you can safely move yourself, or if you can instruct bystanders on how to move you.
Example
#1: Your head is cut,
but no other signs of injury, you may be able to get up – slowly.
Example
#2: You think your arm
is broken. Splint before moving. This will prevent the tearing of tissue,
such as tendons and ligaments.
(Fractures ARE breaks in the bone.)
Sometimes it takes longer for tissue to heal after an orthopedic injury
than it does for the break to heal.
Example
#3: Your knee may be
broken or badly injured. DON’T TRY
TO STAND ON IT.
Example
#4: You’ve turned your
ankle, possible sprain or break. DON’T
TRY TO STAND ON IT.
In
Examples 3 and 4, splint, if possible and apply cold pack to the area to
minimize swelling. One of the worse
mistakes people make is to try to stand on a lower extremity that may be
broken.
In the case of a hip, neck
or back injury -- DO NOT
MOVE OR LET ANYONE MOVE YOU. An ambulance is needed with skilled
personnel and equipment.
WHERE TO GO?
The emergency room is not always
the best place, except in the case of multiple injuries, hip, neck or back
injuries. If possible, call your own
doctor before heading anywhere, so that he may direct your care from the
get-go. If you have an orthopedic
doctor, sometimes it is faster, more effective and less expensive to go
directly to his office. CALL AHEAD FIRST FOR INSTRUCTIONS AS TO WHAT TO DO. If the injury shows bone
sticking out of skin, do not try to push the bone back in. You could cut nerves or blood vessels by
pushing a bone back in. Gently cover
the area with a clean dry cloth and splint in place.
SURGERY OR NO
SURGERY.
Make sure your doctor
understands your polio and your limitations before any decisions are made about
surgery. In the case of broken arms or
knees, other options may be better if muscle function would be further
impaired. At least, they may be worth
the try before surgery.
POST INJURY -- REHABILITATION.
Don’t become impatient. “Lord,
grant me patience, but hurry up!” is
not the correct attitude. It takes a
polio survivor 4-5 times longer to recover from any accident, illness, or
injury than someone who, did not have polio.
Pain medications can also be hazardous.
Many pain medications dull the senses and can cause one to overdo. Non-asteroidal anti-inflammatory medications
are best, if possible. As soon as it is
possible, warm water pool therapy will improve function better than any other
type of physical therapy when guided by a knowledgeable therapist.
SUMMARY.
It pays to take the time
to assess your injuries, to call your own doctor, orthopedic, or physiatrist
before proceeding to a hospital, or clinic.
Discuss with your doctor treatment possibilities and possible results BEFORE any
treatment is done. If you are unable to
communicate yourself, talk to your family about what to do in case you have an
accident before it happens.
Editor’s Note:- It might not be a bad idea to keep a list of
what medications you take, what allergies you might have, what surgeries you
have had, who to call in case of an emergency, and any other pertinent
information you feel is needed. It’s
also a good idea to have the article on anesthesia for polios with that list. I’ve gotten into the habit of keeping it in
the car with me as I do so much driving back and forth to my family. If you need a form for your “medical
history” or the anesthesia article, don’t hesitate to give us a call or e-mail
us your snail mail address.
****************************************
My seven year old grandson, Joseph, is the 2001 State of Georgia, Tae Kwon Doe Champion in his age and weight soooooo, that earned him a trip to the 2001 Jr. Olympics that took place in Tampa, FL July 5 – 8. Naturally, since Tampa is less than 3 hrs from home, and being the good grandmother that I am, I had to go.
Well, I left my home on July 4th to
meet my son-in-law, grandson and granddaughter at Busch Gardens in Tampa. My drive was uneventful except that when I
pulled into a rest area on I-4, I realized that I would be unable to just use
my cane and walk into the restroom – I would have to pull out my scooter ---
the distance was a ridiculously long one.
I truly wish that the people that design these areas would ask the
disabled community for some input. Now,
I’m not saying it was not accessible – in fact, they had a beautiful ramp
leading from the parking area up to the rest rooms (in addition to the usual
flight of steps). Needless to say, I
left that rest area and pulled off the road to go into a McDonald’s. I have found, in my travels, that their rest
rooms are not only accessible, but usually require the least amount of walking
from the handicapped parking area to the restroom itself. Yes, I know this has nothing to do with the
Jr. Olympics, but it is part of my story.
I reached Busch Gardens at 9:30 AM and
found the Handicapped Parking area very easily. They have an abundance of spaces and I was amazed to find that
even at that “early” hour I wound up having to park in the middle of the tenth
row. While taking my scooter out of the
back of my minivan I couldn’t help but notice others that were parking in the
“Handicapped” area – I realize that not all handicaps are obvious to spot, but
it’s really hard to imagine that so many able-bodied looking individuals have
hidden handicaps.
Busch Gardens does have scooters for
rent ($30./day). It’s funny how in one
section of the park the wife is in the scooter and in another section the
husband is utilizing the scooter. Do these
people REALLY want to be handicapped or have they realized the “convenience” of
being able to “ride” around.
Yes, they do have manual wheelchairs
there but so many of us need someone to push the wheelchair around as we don’t
have the upper arm strength.
Now, to get back to Busch Gardens
itself. I found it most
accessible. Our day was cut short due
to the skies opening up on us, but what we did see and do was most accessible. We took the train that goes around the park
– it has a lift in the back that accommodates at least 4 or 5 wheel-chairs and
(probably) 1 or 2 scooters. There is
room for at least one companion per chair or scooter to ride in the back car
with you. The workers are most attentive and helpful.
Joseph and Ashley had a great time on
the children’s rides (carousel, boat ride, motorcycle ride, etc.). After that my son-in-law and Joseph and Ashley
went on the white water raft ride which had a “Handicap Accessible” sign, but
which I chickened out of attempting.
One of the restaurants, the Festhouse,
is cafeteria style so my son-in-law took care of getting me my lunch.
We stayed at the Hyatt Regency, which
turned out to be quite lovely. They had
valet parking so, there was no problem with where to park. I had requested an accessible room and when
I went to register the clerk told me that the room had a “roll-in” shower and
asked it that was OK. I said it was not
as I used a scooter and couldn’t “roll-in”.
She said that was no problem as they also had accessible rooms with
bathtubs. She very nicely escorted me
up to the room to make sure that everything met with my approval. The room was fine – in fact, believe it or
not, it had two double beds!!! The only
comment I made to her was that the closet had only a high bar to hang clothes
on and that it really should have a lower bar also.
The next day I went to the pool area
with Joseph and Ashley. The pool has
steps going into it with a railing all the way down.
Now we come, finally, to the Jr.
Olympics. It was held at the Convention
Center which is approximately 5 blocks from the Hyatt. The opening ceremonies were Thursday evening
so, after having an early room service dinner, we walked – that is they walked
and I scooted – to the Convention Center.
Let me tell you – the curb cuts were impossible. No two were the same. A couple of them were so steep I was afraid
of first going down and on the way back of going up. The Convention Center itself was GREAT. It was very handicap accessible.
The elevator, though in the back of the Center, was spacious enough for
three chairs/ scooters and companions.
The restroom(s) were most accessible.
They even had three handicap stalls in each restroom area. The parade of states with all the children
was great – all the children seemed to be having the time of their lives. After the ceremony we walked back to the
hotel.
As far as the actual Olympics the following day – my grandson, unfortunately, did not become a Jr. Olympian (in fact, he lost in the opening round), but I truly believe the experience is one he will not forget.
****************************************
Reprinted from Wichita Post-Polio
Support Group, Kansas Section, February 2001
By John W.
McBurney, M.D.
Asst.
Prof. Of Neurology University of Alabama
At
Birmingham Sleep-Wake Disorders Center
Sleep accounts for approximately one-third of our lives, but the impact that sleep and sleep disorders have on our health is often under appreciated. In addition, many, if not most, chronic medical conditions have demonstrable effects on sleep, and may predispose to sleep disorders. The purpose of this discussion is to examine the ways in which post-polio syndrome may affect sleep, and important sleep disorders that are common in post-polio syndrome.
NORMAL SLEEP
Sleep is a reflection on active brain processes. It is divided into rapid eye movement (REM – when most dreaming occurs) and non-rapid eye movement (NREM) portions. NREM is further subdivided into four stages (I-IV). Stages III and IV are collectively referred to as slow wave sleep. NREM sleep is felt to result in rest and recuperation. REM sleep is thought to be involved in the restitution of brain functions active in wakefulness -- sort of like defragmenting the hard drive on a computer. Across the night sleep normally evolves in a predictable sequence. This is referred to as sleep architecture. A key feature of sleep architecture is that REM is normally entered only after 90-120 minutes of NREM. NREM slow wave sleep is seen mainly during the first half of the night and REM increases in the second half. Sleep architecture changes as we age. Newborn babies spend 2/3 of each 24-hour period asleep and half of the time is spent in REM. The 24-hour sleep-wake cycle is established by age six. Adolescents have increased sleep needs and have large amounts of slow wave sleep. By retirement age, the amount of slow wave sleep is decreased to nearly none, although REM continues to occupy 20% of sleep time. Increasing sleep fragmentation and increased awake time is noted with advancing age. Sleep onset often occurs at an earlier time in the evening with corresponding earlier awakening. Daytime napping becomes more common in advanced age.
SLEEP and
MEDICAL CONDITIONS
Since sleep is a reflection of active processes within the central nervous system it is not surprising that it is affected by conditions that affect the nervous system or other organ systems monitored by the nervous system. Sleep disorders typically cause either insomnia, in which sleep amount is not adequate to meet needs, or hypersomnia, in which daytime function is compromised by unwelcome sleepiness. Insomnia is the most common medical complaint. Insomnia can result from emotional or behavioral problems, effects of substances such as caffeine or alcohol, side-effects of prescription drugs, effects of physical illnesses, or primary sleep disorders. Post-polio syndrome may predispose individuals to insomnia or hypersomnia in any of these ways.
PRIMARY SLEEP DISORDERS IN POST-POLIO SYNDROME
Sleep Disordered Breathing:
Obstructive Sleep Apnea (OSA), Central Sleep Apnea (CSA) and
Hypoventilation. Post-polio may cause
breathing problems during sleep including OSA, CSA and Hypoventilation. During sleep important changes occur in the
physiology of breathing. These include
an increase in the resistance to airflow in the upper airway, reduced
responsiveness to blood carbon dioxide level, and during REM sleep, reduced
ventilatory effort. Because post-polio
syndrome may affect control of the muscles of the upper airway, reflex
responses to the level of oxygen and carbon dioxide in the blood, and weakness
of muscles of respiration, these normal phenomena may be exaggerated. OSA results when the upper airway collapses
and causes repeated interruptions in airflow (apneas). Apneas are terminated by arousal from sleep,
which may occur scores, even hundreds of times per night resulting in sleep
disruption. This may result in either
hypersomnia or insomnia. OSA is a risk
factor for hypertension (high blood pressure), myocardial infarction (heart
attack), congestive heart failure (CHF) and stroke. Individuals with OSA are also at a seven times increased risk of
motor vehicle accidents. OSA is
suggested by a history of loud snoring, observed interruptions in breathing and
daytime sleepiness.
OSA is very common, affecting 9% of
women and 24% of men, and most cases remain undiagnosed. CSA occurs when the brain reflexes for
triggering breathing during sleep are defective. This can occur due to brain diseases (such as some examples of
post-polio syndrome) or cardiovascular diseases, and may co-exist with other
breathing problems during sleep, such as OSA or hyperventilation. Many individuals with CSA have difficulty
initially falling asleep because of frequent central apneas with arousal at the
transition from wakefulness to sleep (transitional central apneas).
****************************************
Reprinted from Wichita Post-Polio
Support Group, Kansas Section, April 2001
By Harriet
McBryde Johnson
It’s a frequent irritation in my
life. I’m out on the street, in a shop,
or in line for a movie. Someone comes up
to me and says, “I really admire your courage.”
It’s awkward, to say the least. Usually I look for a quick getaway. But sometimes I am moved to question, “Just
what do you know about me that makes you think I have courage?”
The answer is usually vague. You’re a fighter. You have a positive outlook.
You haven’t given up. When I
press for specifics, things often get strange.
Like when this woman called me a “fighter,” and then offered as specific
proof, “Well -- you know, I’ve seen you at concerts for
years.”
In fact, I think I know what’s going
on. These people have to be reacting to
my appearance. How do I look? This is radio so I’ll tell you. Petite, white, female, rolling in a power
wheelchair. I have one of those
neuromuscular diseases that are paraded around every Labor Day on the Jerry
Lewis Telethon. I’ve had it since
birth. At age 43, my spine is
spectacularly twisted. After so many
years of muscle wasting, I’m thinner than a supermodel.
For some people, I represent scary
things. Disability, deformity,
difference, death. Not knowing anything
about my life, they expect people like me to be afraid to show ourselves in
public; they expect us to languish in despair or retreat into impossible dreams
of a cure. Maybe they expect us to just
curl up and die.
If we don’t do what’s expected, they
figure, we must have lots of courage.
Courage to carry on about.
My experience is far from unique. From the wheelchair athlete to the person in
the iron lung, people with conspicuous disabilities are subject to intrusion
from courage-mongers. The mere fact
that we have a disease or survived an accident is enough to provoke this kind
of attention. The phenomenon is
regularly analyzed in the disability press.
In the disability rights movement, the very word “courage” provokes
moans, groans, and out-and-out fury.
Yes, we’ve tried to set the public
straight. We make it clear that we
enjoy life. I did tell that woman that
it doesn’t take courage to go to a concert
-- at least, not if you like
music. When people marvel, as they
often do, that it takes courage for me to practice law and do local politics, I
explain that some things -- listening, talking, reading, writing --
come easy to me, and it’s natural for me to do what I do. I say I’m entirely comfortable in my body,
the only body I’ve ever lived in.
But, more often than not, all this is
taken for bravado, further proof of amazing courage. Some people don’t believe the plain truth when we run over their
feet with it.
Sometimes I’m told, “If I were like
you, I couldn’t handle it” I respond,
sometimes nicely, sometimes not, “You’d handle it. People do. It’s only
sensible.”
But they can’t accept our truth. They’ve been brainwashed by the cure industry
and by the stereotypes of millennia.
They’re programmed to see extraordinary courage in our most ordinary
doings. It’s all about their fears and
low expectations, not our realities.
Perhaps what’s most irksome about this
projected, false courage is that it makes the real thing invisible. Through disability rights work, I’ve come to
know people with real courage people who accept challenges I can only
imagine. People who put their bodies on
the line and do civil disobedience, looking to jailers for the help they need
to get washed, to use the toilet, and to turn over at night. People who demand freedom when teams of
professionals and their own families insist that they’re better off in
institutions. And people who embrace
labels like “cripple” and “mad” and the parts of themselves that are most
scorned by the larger world.
To use another word that causes groans
among disability rights people, the real courage these people show is, truly,
inspirational. It has inspired me.
Now, I’ve never been arrested, and
have certainly never stared down the barrel of a gun or dashed into a burning
building. I have no desire for
life-and-death heroism. But from time
to time I do need inspiration -- to go out on a limb, to try something new,
to accept a task someone else has reasonably declined, to risk looking foolish
for a higher purpose. Witnessing real
courage has given me that inspiration.
The false idea of courage harbored by
those well-meaning people on the street separates people with disabilities from
the larger society. It declares our
very presence astonishing, our everyday lives frightening. In contrast, we all --
disabled or not -- share a capacity for real courage --
seeing beyond self-interest, and risking things we value for a greater
good.
Reprinted
from the national, weekly public radio series, The Infinite Mind, hosted
by Dr. Fred Goodwin @ Lichtenstein Creative Media, Inc.
www.theinfinitemind.com. Permission requested.
Editor’s Note:- I think we have all had family, friends and
strangers come up to us at one time or another and tell us how much the “admire
us.” One of my very dear friends tells
me that whenever she feels down all she does is think of everything I’ve been
through and how I handle life and she feels better. I try telling her that all I do is live life the only way I
can. I take each day as it comes and do
whatever I have to keep myself independent.
What’s funny is that I never thought of myself as been disabled or
handicapped, or whatever the “politically correct” term is now, until I became
involved with Post-Polio Syndrome and all its manifestations. Growing up my parents treated me just like
my cousins parents treated them. I was
mainstreamed into the regular elementary school (after an argument with the
principal) – of course, it was decided that during a fire drill I was to stay
in the building. When I think of that
now and wonder “what if there really was a fire?”, what would they have done
with me…..
Nowadays people tell me how much they
admire me that I drive back and forth to Long Island and that they couldn’t do
it without staying over at least one night in a motel – what they don’t
understand is that it isn’t “courage” that makes me keep going but the fact
that it just takes too much energy to get out of the car to register – back
into the car to go to the room – or to take down the scooter and suitcase to go
back into the motel and take the elevator up – to get in and out of the car to
go into a restaurant for dinner.. It’s
much easier to go through a drive-thru and grab a “fast food” meal, park and
eat it in the car. I combine my gas
stops with pit stops and food stops. I
also find it much easier to utilize a McDonald’s restroom (or Wendy’s or Burger
King) then one of the rest stops on the highway --- there’s less walking
involved as I can still do some and don’t want to have to pull out the scooter
constantly.
So, you see, we really aren’t all that
courageous -- all we are is sensible about how we use what we have left since
we really want to keep going as long as we can.
****************************************
The next article is from the
June 2001 Reader’s Digest - They titled it “TAXI TALES”…. I have a different title
As a cabdriver, I was dispatched one night along with another taxi to pick up a group of hearing-impaired passengers. After they got in, I noticed that the interior light went on in the other cab and stayed on throughout the trip. Then, when the passengers got out, they waved and blew kisses at the driver.
Curious, I got out to ask her what had
happened. She showed me a note she had
given her passengers. On it she had
written, “Do you want me to leave the light on so you can see to talk?”
Contributed
by SHARON P. LANTZ
Editor’s
Note:- It just
goes to show how far a little bit of sensitivity goes….
****************************************
PAIN and POST-POLIO SYNDROME
PAUL
E. PEACH, M.D.
Medical
Director
Palmyra
Post-Polio Clinic
Polio survivors, not unlike the general population, will likely experience pain at some points in their lives due to a myriad of reasons. Unlike the general population, however, polio survivors are somewhat more likely to experience pain as a consequence of the residual paralysis or paresis of chronic polio. If a polio survivor is experiencing pain, this does not necessarily mean that the pain is a symptom of post-polio syndrome. Taking this yet one step further, even if a polio survivor has been appropriately diagnosed with post-polio syndrome and is experiencing pain, this does not necessarily mean that the pain is due to the symptoms of post-polio syndrome. If pain is being experienced, it is essential that an appropriate medical evaluation be made because the pain could be due to any number of factors ranging from very benign to quite serious.
The first step in assessing pain in a
polio survivor is determining if a diagnosis of post-polio syndrome is
appropriate and secondly if the pain symptoms are a part of the post-polio
syndrome being experienced. Post-polio
syndrome is diagnosed clinically and, unfortunately, no clinic test is specific
to detect this syndrome. Therefore, a
physician who has experience in managing and diagnosing post-polio syndrome should
evaluate the person experiencing the pain.
If the pain symptoms are due to the effects of post-polio syndrome, pain
is most likely due to overuse of muscles, tendons, ligaments and/or joints. Other problems that can occur with
post-polio syndrome are secondary nerve compression syndromes, commonly at the
wrist and occasionally at the elbows.
Typical pain syndromes associated with
post-polio late effects include muscle pain and cramping. The patients may describe fasciculation (a
crawling sensation) which is exacerbated by pain, physical activities, stress
and occasionally cold weather. Overuse
of muscles and direct myogenic pain may be occurring and, again this is
secondary to physical overuse.
Typically, the myogenic pain and fasciculation will decrease or
disappear entirely with rest.
Occasionally heat, gentle stretching and light massage are useful
adjunctive treatments as well. Strain
injuries also are not uncommon. Areas
affected include muscles, tendons, bursa and ligaments. These strain injuries may occur chronically
or acutely. They may be posturally
related or occurring as a result of overuse of arms, shoulders and lower
extremities. Pain from the shoulders
resulting from supraspinatus or occasional biceps tendonitis are not uncommon. Elbow pain and knee pain from progressive
genu recurvatum is not uncommon. Genu
recurvatum is a condition in which, because of weakness of the ligaments and
muscles around the knee, there is progressive backward deformity of the knee,
resulting in progressive pain, usually the back of the joint. Eliminating chronic stressors, which may, in
addition to symptomatic treatment, consist of protecting the joints through
bracing, or decrease in crutch walking, can control these injuries and
symptoms.
Another problem frequently see is
degenerative joint disease.
Degenerative changes are potentiated if the patient has been walking on
unprotected joints with chronic abnormal stresses. Typically, symptoms are improved by improving support with
appropriate bracing, postural modification and improved seating support.
Nerve compression syndromes are much
more prevalent in the polio population in those who are crutch or wheelchair
ambulators. Carpal tunnel and ulnar
nerve compression at the wrist is four times more prevalent in this group of
polio survivors than in the general population. Chronic stressors, crutch walking and manual wheelchair
propulsion are the primary aggravating factors. These are alleviated by reducing the stress on affected areas by
use of power carts, thereby reducing crutch walking, and by the use of resting
hand splints to provide better protection and positioning of the wrist. Radiculopathy may be a factor in some polio
survivors, particularly those who have severe scoliosis or neck or low back
hyperextension through weakness and chronically abnormal posture. If degenerative changes are present in the
spine, this also is a factor.
Decreasing abnormal postures may relieve this. If a body corset or body brace is not being worn, this may be an
option in some cases. Improved seating
positioning will also decrease symptoms sometimes in these cases. In other cases, traction may be indicated. Symptomatic treatment with medications and
therapeutic modalities is also a benefit in many cases.
As can be surmised, polio survivors
can experience pain as a result of a large number of factors. The first step in the treatment of pain
should be in accurately diagnosing the cause of the pain. It is only at this point that an effective
strategy for managing the pain can be developed.
Editor’s
Note:- This was
to have been a hand-out at our December 2000 Conference but got misplaced. In going through a box in which conference
items had been placed, I found it.
****************************************
The following two articles also deal with pain. This one is being answered by Dr. Jacqueline Perry, a pioneer researcher in Post-Polio Syndrome…
QUESTION:- WHAT TREATMENT DO YOU RECOMMEND FOR MUSCLE
PAIN?
ANSWER:- Every time a muscle contracts it must then repair itself and refuel. When people with PPS are tired but continue to push themselves, the muscles fatigue more quickly so the system gets overused. Following fatigue is pain, which is also a sign of overuse. I recommend cutting back on activities to a low enough level so there is no pain. If needed, PPS people may have to rest for ten minutes every hour.
Pain is a sign of injury. The first reaction to injury is
inflammation, so I suggest the use of anti-inflammatory drugs (NSAIDs) to
reduce the inflammation. I do not order
other pain medications because they mask the pain. Patients are also warned to avoid using muscle relaxants. (NSAID:
non-steroid anti-inflammatory drugs.)
Heat is good for muscle pain because
it increases circulation. However, I
prefer a two minute ice massage because it not only increases circulation but
it also relaxes the tissues. The
immediate reaction to ice is blood vessel constriction. There is a second reaction of small vessel
dilation, which increases the local circulation.
Since pain is a sign of injury, I tell
patients to adjust their lifestyle until there is no pain. I follow the same rules myself. I am no longer at Rancho Los Amigos Med Center
48 hours per week. When I get tired I
go home and rest. Then I may return
later in the day.
In order to keep on doing things,
polio survivors must not do so much.
They need to reduce strain on their muscles by modifying their lifestyle
and use mechanical assistance when appropriate.
Reprinted
from Rancho Los Amigos Post-Polio Support Group, May 2000; reprinted from Polio
Heroes of TN, June 2001
****************************************
The following is also reprinted from Polio Heroes of TN, June 2001; reprinted from Echo News, May/June 2001
An Editorial
By Charles N. Beaton
My daughter works for a major trauma center here in the valley. She tells me they have done some surgery on four polio survivors within the last month or so.
These people had developed problems in
their necks, osterphytes, etc.
When they had an MRI, they were found
to have developed a syrinx (pronounced seer inx), which is a false Ventricle or
pocket of Cerebral Spinal Fluid (CSF) within the spinal column.
The question was if the syrinx had led
to many of the problems of weakness or sensory changes in the upper
extremities.
The four patients on which they did
the shunting procedure have all had improvements in their upper body strength.
One of my daughter’s neuro-surgeons
asked her if I had had an MRI, because it had been found that many polio
survivors had developed a syrinx. This
neurosurgeon recommended that polio survivors consult with their primary care
physicians to see if an MRI would be advisable.
My daughter cautioned me about
unwanted surgery, but thought our membership would be interested in knowing
about the possibility of polio patients developing a syrinx and the possibility
of alleviating the upper torso weakness with a shunt surgical procedure.
If any of you have found evidence of a
syrinx, we would appreciate hearing from you and having the opportunity to
share information with you.
I can be reached at Polio Echo, or
directly at my home address:- Charles
Beaton, 3208 West Cactus Road, Phoenix, AZ
85029-2327. My electronic mail
address is:- cnbeaton@juno.com.
****************************************
Reprinted
from the April 2001 AARP Bulletin
national service
The nonprofit MedicAlert Foundation now operates a national program to store advance directives for medical care. It will transmit instructions regarding care and treatment to doctors and other health personnel for enrolled individuals who become too disabled to express their preference.
Advance directives usually include a
living will that details a person’s choice for end-of-life treatment and a
durable power of attorney for health care that names a “proxy,” or agent, to
make medical decisions if the individual is unable to do so.
Other documents to be stored might
express one’s wishes concerning resuscitation, organ and tissue donations and
autopsies.
A person’s proxy and doctors are
notified when the directives are filed with MedicAlert. The enrolled individual also receives a
MedicAlert card (or, for an additional cost, special bracelets or neck
pendants) with instructions to contact the foundation should he or she have
incapacitating medical problems.
MedicAlert charges $20 annually to store
advance directives securely and will transmit needed information 24 hours every
day.
To learn more or to get an
application, call toll free (888) 755-1448.
Or write the MedicAlert Foundation, 2323 Colorado Ave., Turlock, CA 95382
****************************************
Reprinted
from the June 2001 AARP Bulletin
‘A LIFELINE
TO HELP’
Free cell
phones
By William Barnhill
When Edith Bonney, 80, fell in the bathroom of her Carrollton, VA, home last summer she had to drag herself across the floors of three rooms to reach the nearest phone and call for help. “It was,” she told the AARP Bulletin, “very frightening.”
Today, Bonney is one of thousands of older Americans equipped with free cell phones, most preprogrammed to dial 911 with the touch of a single button. Her phone was provided by a local TRIAD program run by the Isle of Wight County Sheriff’s office.
“A cell phone is a lifeline to help – and in a crisis it can make the difference between life or death,” says James Wright, national executive director for TRIAD. The group was established 13 years ago by the National Sheriff’s Association, the International Association of Chiefs of Police and AARP, and has dozens of cell-phone projects nationwide, with new ones starting each day.
“A fall, a sudden medical emergency, a crime about to happen – all can pose grave threats to seniors who cannot reach their wired telephones. Even lesser emergencies – a car out of gas on a dark, isolated highway, for instance – can be disastrous,” Wright notes.
TRIAD-sponsored and similar programs are made possible by a little-known U.S. Federal Communications Commission (FCC) regulation requiring that 911 calls be connected at no charge from all wireless phones whether they have been activated for paid service or not.
At the corporate level, U.S. Cellular Corp. has distributed thousands of cell phones to older people through more than 60 agencies in 16 states. And, says Michele Merrell, with U.S. Cellular, the company hopes to expand the program this year to at least nine other states.
On the community level, retired banker Jim Malone, 81, of Campbell, CA, has almost single-handedly collected more than 700 cell phones and given them to older persons in the past nine months.
“If we save only one person from harm, all the work will be worthwhile,” he says.
For Michael Eck, 44, of Baltimore, a cell phone may have saved his life when last August he was on the receiving end of a truck driver’s road rage. A 40-ton truck rammed Eck’s car several times during a 12 mile chase in Pennsylvania before state police caught up to them after Eck called for help from his cell phone.
“Emergencies” aren’t always life-threatening. When Dawn Moser, 61, and her husband, Joe, 62, of Thurmont, MD, ran out of gas in Ohio last winter, they used the cell phone they got from the Department of Aging in Frederick, MD, to call for help.
A 911 operator sent a tow truck with gas to get the Mosers back on the road again.
“Without the cell phone, we would have had to walk miles in freezing weather,” Dawn told the Bulletin.
Dottie Burkett, who runs a phone give-away program for TRIAD in Seminole County, FL, points out, “It’s good to tell senior, ‘Lift your hood and sit there until someone comes’, but… many crimes occur on the roadside where [people] are sitting ducks for predators.”
In fact, a survey done for AARP reveals 51 percent of people over 50 have cellular service, and 54 percent of people over 65 subscribe to a wireless service plan for safety, not for chat, says Christopher Baker of AARP’s Public Policy Institute.
But, cautions William Hinkle, with a consolidated 911 service in the Cincinnati area, even a cell phone can’t save you if you can’t tell the 911 operator where you are.
Why? Because although the FCC regulation requires the technology allowing emergency operators to pinpoint the location of cellular callers, that system is not yet in place.
Be alert, Hinkle advises; if you can give 911 the nearest intersection, mile-post, highway exit or a landmark, it will bring help faster.
Dee L’Archeveque, M.D., chair of emergency medicine at St. John’s Hospital in Far Rockaway, N.Y., founded “Phones for Life” for older persons. So far, she’s distributed more than 1,000 phones and has 500 more locally ready to hand out [call (718) 869-7224].
Mildred Wardlaw, in her 60s, of Bayside, N.Y., feels great relief since her husband, Earl, 73, who has emphysema, got his phone.
“I used to worry when I had to leave him alone in the house or when he went for a walk alone,” she says. “Now I know he can get help wherever he is and whenever he needs it.”
However, cautions L’Archeveque, you must charge your phone once every week and test it at least once a month.
“And always keep it with you. If you fall and injure yourself and the phone is on the other side of the room, or the batteries are dead, it may as well be miles away,” she says.
Where to obtain a 911
cell phone:-
TO LEARN IF THERE is a 911 cell phone program in your area:
· Call your local sheriff’s office or police department;
· Contact your local Area Agency on Aging;
· Call your local U.S. Cellular retail store (listed under Cellular Services in the Yellow Pages); or
· E-mail TRIAD’s national office, terrih@sheriffs.org, or call (800) 424-7827, ext. 305.
·
Editor’s Note:- My cell phone has come in handy on several occasions when I was driving – once my electrical system went on me, and another time when I had not one but two tires blow on me at the same time.
Besides calling either 911 or AAA or whatever automobile service you are connected with, you’re able to reach family and/or friends that may be waiting for you.
****************************************
Reprinted
from Daytona Beach News Journal, July 18, 2001
Department
Stores to offer more access for disabled
MIAMI – The May Department Store Co.’s 430 stores will be renovated to make their aisles, fitting rooms, bathrooms and telephones more accessible to disabled shoppers under a class-action settlement. The agreement, announced Tuesday, is the first by a national department store chain on merchandise access under the Americans With Disabilities Act, said Matthew Dietz, a lawyer who sued May. The company is the parent of Lord & Taylor, Hecht’s, Robinsons-May, Filene’s and other chains.
Wide aisles will surround clusters of
six to 12 movable merchandise racks to allow shoppers to at least see items if
they can’t physically reach them. May
already has a policy of offering staff members to retrieve hard-to-reach
products. The company agreed to a
timetable to get rid of long tablecloths that can tangle wheelchair wheels
within a year, lower the height of showcase tables to 3 feet within 18 months
and widen aisles to fitting rooms and restrooms within three years.
Similar lawsuits are pending against
the Macy’s and Burdines chains. Dietz
said he is in settlement talks with the Claire’s accessories company, which
operates about 2,500 stores nationally.
Editor’s
Note:- I was in Burdines
shortly after reading this article and noticed that they were widening aisles
and I complimented them on it. Let’s
see how long they remain nice and wide.
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
FLORIDA EAST COAST
POST-POLIO SUPPORT GROUP
12 ECLIPSE TRAIL
386 676-2435 e-mail:- bgold@iag.net
DATE:- SUNDAY, SEPTEMBER 16, 2001
TIME:- 2:00
– 4:00 P.M.
PLACE:- ATLANTIC MEDICAL CENTER
400 CLYDE MORRIS BLVD
DAYTONA BEACH, FL
(modular building on SOUTH side of Medical
Center)
PROGRAM:- Georgia Morgan of SuperMed – Topic “Will
They Pay”
What exactly will
Medicare pay for with respect to scooters,