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And THE MERRIEST OF CHRISTMASES
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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 at Red Lobster Restaurant
JoAnne
King, LCSW, Hospice of Volusia/Flagler
***************************************
A brief explanation for the “puzzle” you found with the newsletter.
You may recall that our newsletters are run off courtesy of Central Florida Legal Services. Well, they got a new copy machine – one that would do our newsletter in magazine format. It would also be able to run it at night with no one having to spend hours at the machine while it runs off the 600 we send out each time. They ran one copy for me to check -- needless to say, it was perfect. It was decided that the rest would be run while I went north for my Annual Family Reunion and a week or so at my son’s. Upon my return, I picked up the newsletters, thanked them, and went home. Imagine my surprise, when we started labeling the newsletters to see what had happened.
Knowing
the cost of paper and toner, it was thought to be wiser to utilize these
newsletter puzzles, rather than throw them out and to “explain” what happened
in this issue.
Sooooooo –
my sincerest apologies for making everyone work hard to read this issue.
****************************************
If you were faced with a serious illness, does your family know what kind of care you want? If your elderly parents, or other members of your family, were to become seriously ill, do you know what they want?
According to a recent study by the
National Hospice and Palliative Care Organization, a majority of Baby Boomers
are more comfortable discussing sex and drugs with their teenage children than
they are discussing end of life issues with their elderly parents, even if one
of their parents had been diagnosed with a terminal illness.
This presentation is for adults of all
ages. It will be an interactive
discussion that will include:
·
The need to have conversations about our end of life wishes;
·
How to communicate with family and health care professionals
about our wishes.
·
Advances directives – what they are, how to complete them,
what to do with them once you have them.
This subject is an important one for all of us. Many of us cannot bring ourselves to discuss with issue with our children this may show us how to ease into the issue.
In Dec.
2000, my husband, John, and I went to Moss
Rehab to participate in the study on "Shoulder Dysfunction in
Post-Polio and Elderly Populations". As you know, people with weak
legs put excessive amounts of strain on their shoulders. They need polio
survivors and also people over the age of 60 who have not had polio as
subjects. Since John goes with me anyway, I convinced him to make himself
useful and be a subject.
We answered questions about our health and activity patterns, walked a short distance, climbed a flight of stairs with a monitor, and had our muscle strength and joint range of motion measured. (You DO NOT need to be able to do all the activities to participate.)
Because John has strong muscle strength, he failed "guinea pig" (his words), but I was eligible for a related treatment study that ran for 16 weeks. I had an evaluation by two physical therapists, who developed an individualized exercise program for my legs. Some people were given leg exercises and some were given shoulder exercises (it was a blind study). I did the exercises 3-4 times a week and kept a log measuring the difficulty on a scale. My "personal trainer" called every week to see how I was and if I was having any difficulty.
I returned to Moss once a month for additional strength and joint range of motion testing. Each time I went several new exercises were added. Each visit took about 2 hours (plus 150 miles round-trip traveling time for us).
I completed the study in May and testing showed there was improvement in several muscles. I must admit though, that I did not feel any difference in my walking or activities, but my shoulder pain HAS decreased. I was happy to participate and we miss our monthly "dates with the girls". The young ladies involved in this study are professional, knowledgable, caring and fun. And they were always ready to share some helpful hints to make life easier for me.
Editor’s Note:- Our thanks to Rita and John for sharing their experience with us.
****************************************
The following article was sent to us via the Internet.
Salk team's 'Mr. Inside' honored for work on polio vaccine
Thursday, August 09, 2001
By Anita Srikameswaran, Post-Gazette Staff Writer
The last living member of the
research team that created the Salk polio vaccine received an award yesterday
from Rotary International, the organization that has run vaccination campaigns
around the globe that have helped to nearly eliminate the disease.
Julius Youngner, distinguished
service professor at the University of Pittsburgh, was honored at a meeting of
the Rotary Club at the Omni William Penn with the PolioPlus Award. The plaque
features a drawing done by a 12-year-old polio victim from India.
"This is an organization that
has a long history with polio eradication and I think it's fitting that they
recognized somebody at the University of Pittsburgh, where the eradication
really started," Youngner said. "It's very nice that they asked me to
accept this award."
In 1949, Youngner, a virologist
with the U.S. Public Health Service, joined Dr. Jonas Salk in his Oakland lab.
Nationally, 20,000 cases of polio occurred annually. The disease paralyzed
some, confined others to iron lung chambers for breathing support, and killed
many.
In those days, Salk was "Mr.
Outside," as Youngner put it.
"He did all the fund raising
and the fighting with his scientific opponents and dealing with the public and
the press," said Youngner, adding that those were essential tasks.
"He went out and did the vaccinating, had his picture taken vaccinating
kids."
Behind the scenes at the lab
bench, Youngner -- "Mr. Inside" -- conducted the experiments.
Using then-new techniques of cell
and tissue culture, he and collaborators at other labs learned that the polio
virus had only three strains, or types.
"That was the first
indication that a vaccine was feasible," he said. By contrast, the common
cold can be caused by many different viruses and the virus that causes AIDS
changes rapidly.
The research team, which included
Byron Bennett and James Lewis, focused on developing a vaccine made from killed
virus, which many scientists believed to be impossible. Up to that time,
effective vaccines, such as those against yellow fever and small pox, were made
of live virus that had been modified, or attenuated, so that they did not cause
disease.
If the virus were dead, the
critics contended, it would not trigger the immune system to launch defensive
antibodies.
The Pitt team proved the naysayers
wrong.
The researchers conducted
experiments on monkeys and then on themselves, using a vaccine made of killed
polio virus. Salk injected the vaccine into 45 patients recovering from polio
and showed that it boosted their antibody response and caused them no harm.
"You had at your fingertips
the prevention of a terrible disease, an epidemic disease," Youngner
reflected. "I can't describe to you the kind of excitement this generated.
We knew what the outcome would be if we were successful. This was a pretty good
inducement to work hard."
National trials that began in 1954
paved the way for widespread polio vaccination campaigns using the Salk
vaccine. The U.S. Public Health Service estimated in 1958 that the vaccine had
saved more than 35,000 people from death or crippling.
In 1961, after the Salk vaccine
had been given to 91 million Americans, medical authorities recommended
switching to the oral Sabin vaccine, which is made from a live virus modified
so it doesn't cause disease.
Youngner said the Sabin vaccine,
usually given on a sugar cube, was a sound strategy, especially in developing
countries where the cost of needles and syringes to deliver Salk vaccine would
be prohibitive.
In 1991, the World Health
Organization declared the Western Hemisphere free of polio. The agency could
declare polio eradicated from the globe in a few years, Youngner said.
Health officials recommended in
1999 returning to the Salk vaccine, because the risk of getting polio from the
live Sabin vaccine had become higher than the chance of getting infected
naturally. About eight or nine American children were getting paralytic polio
from the Sabin vaccine annually.
Youngner, 80 years old and an active
researcher and teacher, added other scientific achievements to his resume,
including development of the first vaccine against equine influenza, a critical
advance in the veterinary world.
But he considers his role in
ending polio the highlight of his career: "This was like a rocket going
off, a space shot."
****************************************
This article was taken right off the internet – thank you Carl Cortez for posting it for us. From the Seattle Post-Intelligencer website.
Many polio survivors are facing
new danger
Syndrome marked by muscle weakness, pain and fatigue
Tuesday, June 5, 2001
By LEE BOWMAN
SCRIPPS HOWARD NEWS SERVICE
Decades after they largely
recovered from the deadly virus, about 20 million polio survivors worldwide are
facing a new assault on their muscles that could return them to wheelchairs and
ventilators for the rest of their lives, a new report says.
Called post-polio syndrome, the
secondary illness may affect up to 4 in 10 polio survivors, yet the phenomenon
has been poorly researched and is often not diagnosed by physicians who
consider polio part of medical history.
The report, released yesterday by
the March of Dimes, says as many as 250,000 Americans are at risk.
The syndrome's main symptoms are
new muscle weakness that gradually worsens and severe fatigue and pain in
muscles and joints. It is often accompanied by decreased muscle endurance
during physical activity. There is no known cure for the illness, but experts
stress that careful management can help victims battle the worst effects.
Polio was officially declared
eradicated in the United States in 1979, more than two decades after the first
successful vaccines for the virus were developed and widely administered to
children in a bid to ward off "infantile paralysis." The World Health
Organization has set a goal of eliminating polio globally by 2005, but the
virus remains a diminished threat in many less developed nations.
"After the vaccines came out,
the medical profession and the public in general all thought polio was over
with," said Dr. Lauro Halstead of the National Rehabilitation Hospital in
Washington, who was struck with polio as a college student in the 1950s. The
disease paralyzed his right arm and for a time put him in an iron lung and then
a wheelchair.
"I made a good recovery,
finished college and medical school," Halstead said. "But I began
experiencing new weakness in the early 1980s. I think a million dollars was
spent on tests, but doctors just couldn't figure it out. I had new weakness in my
legs and very intense muscle pain that was reminiscent of the pain I had with
polio. I began to wonder if it was connected."
Halstead finally linked up with
researchers studying polio's long-term effects.
During the 1980s and 1990s, more
and more polio survivors began having similar problems, and many of them
contacted the March of Dimes, the organization founded by President Franklin
Roosevelt in 1938 to lead the war on polio.
"We had the joy of seeing
polio conquered in the U.S. and had taken on a new mission of preventing birth
defects and infant mortality," said Christopher Howson, director of global
programs for the March of Dimes. "But this is still our legacy and there's
certainly a feeling of commitment to the people who endured the epidemics of the
past.
"Our goal is to get the word
out that this condition is severe, but it's treatable as long as it is
recognized," Howson said.
Doctors say people with the
syndrome can use many strategies, from lifestyle changes to reduce fatigue to
drug treatments to help manage symptoms.
The new report is the work of an
international committee organized by the March of Dimes two years ago to come
up with new guidelines for diagnosing and caring for post-polio syndrome.
There's much uncertainty about how
and why nerve cells that survived and recovered after polio start to fail
again. Researchers say the most likely scenario is that the surviving motor
nerves that allowed polio victims to recover wear out early from overuse.
The polio reports are available online at www.modimes.org/Programs2/International/Default.htm.
****************************************
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 was 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 paid no 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 (33) 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 450 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 Brazil, England, France, Germany, Israel, Panama, Portugal, Lebanon, 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.
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Reprinted from The
Lighthouse
“THE BUT FIRST SYNDROME”
I’m writing to let you know that I
have recently been diagnosed with a very serious condition and there’s no hope
I will ever recover. The scientific
world is frantically searching for a cure.
This is an ailment many of us suffer from and may not as yet have been
diagnosed. However, now you may be able
to discuss it with your loved ones and try to explain what really happened to
you all those times you tried so hard to accomplish something and didn’t. I call it the
“BUT FIRST
SYNDROME”.
You know, it’s when I decide to do the
laundry -- I start down the hall and notice the newspaper on the table. Okay, I’m going to do the laundry………. BUT FIRST I’m going to read the paper.
After that I notice the mail on the
table. Okay, I’ll just put the
newspaper in the recycle stack………………………. BUT FIRST I’ll look through that pile of mail and see if there are any bills to
be paid. Yes, now where’s the
checkbook? Oops…….there’s the empty
glass from yesterday on the coffee table.
I’m going to look for that checkbook……………….. BUT FIRST I need to put the glass in the sink.
I head for the kitchen, look out the
window, notice my poor flowers need a drink of water. I put the glass in the sink, and darn it, there’s the remote for
the TV on the kitchen counter. What’s
it doing here? I’ll just put it
away………….
BUT FIRST I need to water those plants.
Had for the door, and…………..
Aaaagh! Stepped on the cat. Cat needs to be fed. Okay, I’ll put that remote away and water the
plants……... BUT FIRST I need to feed the cat………
At the end of the day: Laundry is not done, newspapers are still on
the floor, glass is still in the sink, bills are unpaid, checkbook is still
missing, and the cat ate the remote control…………... AND, when I try to figure out how come nothing got done all day, I’m
baffled, because I KNOW I was BUSY ALL
DAY!!!!
I realize this condition is
serious….. and I should get help!!
BUT
FIRST
I think I’ll check my e-mail.
****************************************
Reprinted from Daytona
Beach News Journal, Wednesday, July 11, 2001, Science/Health Column
Study says
Herbal Drugs May Harm
Surgical Patients
By
APARNA SURENDRAN of the LA Times
Some popular herbal medicines can be
dangerous and even life-threatening for people undergoing surgery and should
not be taken before an operation, according to a review of research released
Tuesday.
Echinacea, ephedra, garlic, ginkgo,
ginseng, kava, St. John’s wort and valerian, which account for nearly 50
percent of all herbal medicines on the market, “potentially pose the greatest
impact to the care of patients undergoing surgery,” according to the
researchers from the University of Chicago who conducted the study.
The researchers analyzed a host of
existing studies, case reports and reviews about the safety of the eight common
herbal medicines and concluded the substances could directly affect the patient
or interfere with other drugs given during surgery. Their findings are published in the current issue of the Journal of the American Medical
Association.
Patients often do not tell their
doctors about their herbal usage because of fear that doctors will not approve
of self-medication or because they do not think of the herbal products they take
as being real medicines, said one of the study’s authors, Dr. Chun-Su Yuan,
assistant professor of anesthesia and associate director of the Tank Center for
Herbal Medicine Research at the University of Chicago. As a result, he said, if complications arise
during surgery, the doctor does not know how to react.
“There is no real recognition of
herbal medicines,” Yuan said. “The Food
and Drug Administration classifies these products as dietary supplements, so
patients think of them more as a food then as medicine.”
Under federal law, the FDA is only
responsible for ensuring that dietary supplements are safe and cannot order a
labeling change if a manufacturer wants to call its product a dietary
supplement as opposed to an herbal medicine, said Christine Lewis, director of
the FDA’s Office of Nutritional Products, Labeling and Dietary Supple-ments.
The length of time to avoid an herbal
medicine before surgery varies. Gingko,
for example, should be discontinued at lest 36 hours before surgery. It can interfere with the ability of blood
to clot meaning that surgical patients would be at greater risk for bleeding. Ginseng should be discontinued at least
seven days before surgery. It inhibits
warfarin, a blood-thinning drug that is used during surgery and the
interference can result in death, Yuan said.
The study cautions, however, that
discontinuing all herbal medicines before surgery can, at times, be
dangerous. In some cases, stopping an
herb suddenly can cause withdrawal symptoms, the researchers noted. For example, suddenly stopping valerian, an
herb often used as a sleeping aid, can cause acute withdrawal. To avoid those problems, the researchers
suggested that people taking valerian taper off their use of the drug over a
several-week period before surgery.
Currently, the American Society of
Anesthesiologists recommends that patients stop taking herbal medicines at lest
two weeks before surgery. That,
however, poses a problem for many patients requiring emergency surgery.
To come up with their shorter
recommendations, the researchers looked at studies of how long it takes to
excrete a specific herb --- a sign that it had been metabolized and
eliminated from the body.
Philip Weintraub, a spokesman for the anesthesiologists,
called the study “excellent” but said that more patient studies need to be done
before the organization could issue new guidelines for proper herbal usage.
Dr. James Adams, associate professor
of Molecular Pharmacology and Toxicology at the University of Southern
California said that the findings of the researchers are only a start. This study is very good,” Adams said, “but
there are hundreds of other herbal medicines out there that ought to be
tested.”
Yuan said the review article wasn’t
meant to scare patients.
“Herbal medicines do a lot of good,”
he said. “Ginseng is good for
protection of the central nervous system and also reduces blood glucose
level. But patients and physicians must
be aware of the risks as well.”
Editor’s Note:- As mentioned in the previous
article --- PLEASE check with your
doctor when taking any herbal medications.
****************************************
Reprinted
from Reader’s Digest, September, 2001
HEADS UP ABOUT PROSTRATE CANCER
A bald spot can be more than a blow to vanity -- it may be a red flag
for future health problems. Research
has identified hair loss at the crown of the head as a marker for elevated risk
of heart disease. But there’s
more: A Duke University study found
that this trait may also indicate a higher risk of prostrate cancer --
as much as two times higher if a man’s baldness was apparent by age 30. (Thinning at the temples doesn’t increase
risk.)
These findings are preliminary, says University
of Rochester dermatologist Mary Gail Mercurio, but they make sense. High levels of male hormones such as
testosterone, which can cause hair follicles to shrink, may raise cholesterol
counts and blood pressure -- both linked to heart disease. The hormones can also contribute to prostrate
cancer.
The upside to this obvious
indication? That bald spot is a
reminder to keep a close eye on your blood pressure and cholesterol, and to
discuss prostrate cancer risk with your doctor.
--Kathleen
McAuliffe in More
Editor’s Note:- Knowing the prevalence of
prostrate cancer among men, I thought this important enough to put into our
newsletter.
****************************************
Reprinted from Remedy,
Fall 2001
Don’t
Mix Grapefruit Juice And….
If you’re a GJ drinker taking any of these drugs, don’t abruptly stop
drinking the juice --- that could alter the dosage you’re
getting. Get your doctor’s advice.
►Certain calcium channel blockers. These include
felodipine (Lexxel, Plendil), nifedipine (Adalat, Procardia), amiodipine
(Norvasc) nimodipine (Nimotop), nisoldpine (Sular), and varapamil (Calan).
► Some immune-system suppress-ants. These include
cyclosporine (Sandimmune, Neoral) and tacrolimus (Prograf), often prescribed
for rheumatoid arthritis and lupus.
► Some cholesterol-lowering
drugs known as statins. These include atorvastatin (Lipitor), lovastatin (Mevacor), and
simvastatin (Zocor). Two not
affected: fluvastatin (Lescol) and
pravastatin (Pravachol).
► Certain sedatives and anti-anxiety drugs. These include buspirone (BuSpar) and some
benzodiazepines, such as diazepam (Valium), triazolam (Halcion), and midazolam
(Versed) syrup.
► Some psychiatric
medications. These include carbamazepine (Tegretol), clomipramine (Anafranil), and
sertraline (Zoloft).
► One antiarrhythmic heart drug. Amiodarone
(Cordarone or Pacerone).
►
Some hormones. These include ethinyl estradiol (a form of
estrogen) and natural progesterone.
Editor’s Note:- PLEASE check with your
doctor as to the possible interactions that may occur when you take these drugs
with grapefruit juice. Also, you should
ALWAYS ask your doctor if the drugs you are taking have interactions with each
other. Sometimes we go to one doctor
for one problem and another doctor for something else – both doctors prescribe
drugs but never ask if you are taking something else. THIS CAN BE VERY DANGEROUS!!!!
Make sure you
ask your doctor about interactions of your drugs. We will always try to alert you to any drugs that may give us
difficulties.
****************************************
The following article was e-mailed to me by Mary Clarke Atwood with her
permission to use in our November/December 2001 newsletter. Our thanks to R. Daggett and V. Duboucheron for
their hard work on this article, but most especially to Dr. Oppenheimer and
Mary.
Assistance for Breathing
Problems of Polio Survivors
With Edward A. Oppenheimer,
MD, FCCP, Pulmonary Medicine
Editorial assistance by R. Daggett,
V. Duboucheron, and E. A. Oppenheimer, MD
Dr. Edward A. Oppenheimer is
Associate Clinical Professor of Medicine, University of California, Los Angeles
(UCLA). He retired after 31 years with Kaiser Permanente Medical Group where he
organized and coordinated the Kaiser home ventilator program.
This report is based upon
Dr. Oppenheimer’s presentation to the Rancho Los Amigos Post-Polio Support
Group on March 24, 2001. He had just returned from the Eighth International
Conference on Home Mechanical Ventilation held in Lyon, France.
Although Dr. Oppenheimer is no longer seeing people
in office practice and does not have an office referral, he will try to respond
to comments and questions emailed to him at Eaopp@UCLA.edu.
Pulmonary
health is a significant issue. It is important for polio survivors to learn about mechanical ventilation by getting good
information and talking to peers. Then,
if the situation presents itself later, a person can make an informed decision.
This report presents the identifying signs of pulmonary insufficiency and a
variety of available options.
The
primary functions of the respiratory system are to bring oxygen into the lungs,
transfer the oxygen to the blood, to expel
the waste product called carbon dioxide, and to help regulate acid-base
balance. Oxygenated blood travels from the lungs through the pulmonary veins
and into the left side of the heart, which pumps the blood to the rest of the
body. Oxygen-depleted, carbon dioxide-rich blood returns to the right side of
the heart and is pumped through the pulmonary artery to the lungs, where it
picks up oxygen and releases carbon dioxide.
Because
the lungs have no muscles of their own, the work of breathing is done primarily
by the diaphragm and, to a lesser extent, by the intercostal muscles (between
the ribs). During forced or labored breathing, other muscles in the neck, chest
wall, and abdomen also participate.
As the
diaphragm contracts, it moves down, enlarging the chest cavity. This reduces
pressure in the chest and air rushes into the lungs to equalize the pressure.
The diaphragm then relaxes and moves up; the chest cavity contracts and raises
the air pressure. Air is pushed out of the lungs because of their elasticity.
The intercostal muscles participate in this process, especially if breathing is
deep or rapid. When everything is working well a person hardly notices that he
is breathing.
Breathing problems
can sneak up on polio survivors because they may not be easily identified. Is
your answer “Yes” to any of these questions?
·
Are you experiencing increased fatigue?
·
Do you frequently awaken with a headache?
·
Are you having problems sleeping?
·
Do you need to use additional pillows when sleeping?
·
Do you sleep better in a recliner or chair than in your bed?
·
Do you have a poor cough or difficulty clearing secretions?
·
Did you ever use assistive breathing devices (such as an
iron lung) during or following the acute stage of polio?
If your
answer was “Yes” to any of these questions, then it is probably time for a
breathing evaluation. If your answer to all of the questions was “No”, it is
still important to educate yourself about possible breathing difficulties in
Post-Polio Syndrome (PPS) so that you will be able to recognize a problem if it
does occur.
Rancho Los
Amigos Medical Center is where Home Mechanical Ventilation (HMV) began many
years ago. Pulmonologist D. Armin Fischer, MD and coordinator William S.
Prentice, RN, BSN developed the program.
Rancho Los Amigos soon became the center of expertise in this
field.
Fortunately
Dr. Fischer and William S. Prentice both shared their knowledge with Dr.
Oppenheimer when he began working with home ventilation in 1975. However, Dr.
Oppenheimer credits his patients for teaching him the most.
During the
1950s some polio patients needed mechanical ventilation to enable the movement
of air in and out of the lungs. Initially the iron lung was the primary
breathing equipment used. Early treatment of polio patients sometimes required
a tracheostomy (an incision into the trachea or windpipe) and the insertion of
a tube to facilitate breathing.
Survival rates were greatly increased by tracheostomy and positive
pressure mechanical ventilation.
When polio
survivors no longer needed to be in an iron lung full time, the following
equipment was sometimes used.
·
Rocking Bed - to help move the diaphragm up and down.
·
Cuirass (similar to a turtle shell) - a good substitute for
the iron lung because it is more portable and not as restrictive.
·
Pneumobelt - a corset-like device that pushes the diaphragm
up to assist breathing on exhalation; inhalation is not assisted. It is not
very powerful. People who can breathe
some on their own use it when sitting-up.
Many were
able to discontinue using these devices following recovery while others still
continued to need them. Now with new
breathing problems appearing, assistive breathing devices may once again become
necessary for some survivors.
It is
necessary to understand PPS breathing problems and react positively rather than
be slowed down by any barriers, especially social issues or economic ones. By
using ventilatory equipment when necessary, a person can focus on living, be
engaged in life, instead of hibernating. Survival depends upon the individual’s
resources and enthusiasm.
Polio
survivors such as the late Ed Roberts have demonstrated that even when a person
is severely disabled (in some people’s point of view), one can still lead a
very complete and active life. Although he was 24-hour dependent on
non-invasive ventilatory equipment, Ed had a tremendous joy of living and was
an inspiration to others. He was founder of the independent living movement,
Director of the California Department of Rehabilitation from 1975 to 1983, and
instrumental in helping severely disabled students be admitted to the
University of California, Berkeley.
1. It is
critical to have an effective cough. The strength of a person’s cough can be
assessed with a Peak Flow Meter (cost $15-$20). The individual takes a deep
breath and then coughs forcefully into the Peak Flow Meter. A “peak cough flow”
reading of less than 180 liters/min. indicates a weak cough, according to John
R. Bach, MD.
A cough
can be improved by:
·
Using huff
coughing (not the high force cough, but repeated gentler huffs to bring up
secretions)
·
Using the breath stacking technique (while using a
mechanical breathing aid, hold your breath after one or more inspiration cycles
and add the air from the next inspiration cycle), or with frog breathing (GPB).
Examples of mechanical devices used for this are an Ambutype resuscitator bag
and a volume ventilator.
·
Manual cough assistance methods (having someone push on your
upper abdomen as you cough)
·
Devices to improve cough and clearance of secretions, such
as Emerson’s CoughAssist device, formerly known as the In-Exsufflator [J.H.
Emerson Co., Cambridge, MA (800) 252-1414]
2. If
breathing muscles are weak because of PPS do not use up your energy on
exercising to improve their strength. It is unlikely to help. However, the
ability of the lungs to expand should be maintained. Using a chest inflation machine, learning how to take a deeper
breath, and glossopharyngeal breathing (GPB) – sometimes called “frog
breathing”, can help maintain the ability of the lungs to expand. GPB can
augment the volume of air you breathe in; it is an important survival skill to
learn if your respiratory muscles are weak.
3. Use of
a Continuous Positive Airway Pressure (CPAP) machine may also require increased
work for the expiratory breathing muscles. The CPAP was developed during the
1980s to keep airways open for people with sleep apnea. During the 1990s
cyclical inspiratory pressure was added to this equipment and the Bilevel
Positive Airway Pressure (BiPAP) came into use. The BiPAP assists inspiration.
Bilevel equipment is made by a number of manufacturers. When respiratory
muscles are weak due to PPS, a bilevel device would usually be better and safer
than CPAP even if a sleep study shows sleep apneas.
4. Avoid
poor nutrition. Unless your muscles get the required amount of nutrition as
well as oxygen, they will function less effectively and any weakness will
become increasingly noticeable. If a person has lost weight and become frail,
finding ways to build up his nutritional status will help, in terms of his
immune status and muscle function, as long as he doesn’t become overweight.
Sleep
aggravates weak breathing muscles and developing respiratory failure. Thus more breathing problems occur at
night. If daytime breathing tests are within normal range, a simple over-night
oximetry study can be done at home (this continuously records pulse and oxygen
saturation). Sometimes a more expensive
and elaborate over-night sleep study is needed. During this procedure a patient is connected to many measuring
devices and when indicated, assistive breathing equipment may also be used to
decide its effectiveness and to determine the proper settings.
During REM
sleep (deep “rapid eye movement” sleep)
accessory breathing muscles and
other voluntary muscles become so
relaxed they are sometimes referred to as paralyzed. That is why breathing
problems are first noticed during REM sleep because at that time breathing
becomes completely dependent upon
the patient’s diaphragm, which may be weak due to PPS.
When a
survivor has bulbar impairment there is a triple threat: weak respiratory
muscles, a poor cough (which can lead to development of infection and
pneumonia), and the risk of food aspiration.
Choosing
Home Mechanical Ventilation (HMV) is conditional upon:
·
Quality of life is worthwhile.
·
Physician presents the options.
·
Resources are available (particularly care giving).
·
Social support is available for HMV (hand in hand with
medical support).
·
Benefits outweigh the burdens.
Most
people in the United States think of a ventilator as evil equipment. So without any advance education most would
choose to withhold using a ventilator when deciding in advance. However, 95% of those who are already on HMV,
want to remain on it. So it is
important for everyone to learn about HMV by getting good information and
talking to peers. Then, if the
situation presents itself later, a person can make an informed decision.
A survivor
who is having breathing problems has four choices:
1. He can decline
assisted ventilation and use only palliative care.
2. He can use
only non-invasive Nasal Positive Pressure Ventilation (NPPV), such as BiPAP.
3. He can use
assisted ventilation only for acute episodes such as pneumonia.
4. He can use
whatever ventilation support is needed for long-term survival, including trach
positive pressure ventilation if needed.
By
providing experience with noninvasive ventilatory
equipment (such as BiPAP) before a crisis occurs, the patient will then have
the ability to survive an acute respiratory infection if it does develop. And,
this also provides a “hands on” trial of the equipment to help decision making
(like a “test drive”).