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T H E S P I N A L C O L U M N
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FALL 1995 Vol.5 No. 3
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JUST A THOUGHT
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Tort reform is not a cooking term.
The tort laws of this country help compensate consumers for the
negligence of manufactures and service providers.
In the past three years a manufacturer has been successfully sued for
a cracked weld in the front fork of a mountain bike. The rider, now a
quadriplegic, was awarded enough to cover his living and medical expenses for
the rest of his life.
Not long ago another quad won a settlement against a hotel chain
because of a sloping bottom in the diving well of the hotel's swimming pool.
Without the tort laws, these quads would most likely have become
burdens upon the government for support and medical care. With the tort laws,
the manufacturers and service providers pay the cost.
Supporters of tort reform cite cases similar to the hot coffee spill
at a fast food restaurant and the $2 million award in the touch up paint job
on a new car.
Large punitive damages are actually the exception rather than the
rule.
The changes in the tort laws are designed to address less than 1
percent of all the civil cases that are files each year.
Congress has its finger in the pie and if you want to prevent them from
escaping with the filling, the time to act is now. Get informed! Call your
congresscritter!
KIDNEY STONES
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Almost all quads at sometime in their life will have to deal with the
unpleasant fact of having a kidney stone.
Stones form for many reasons. If you don't drink enough water, for
instance, you won't have enough urine to dilute chemicals. Then the chemicals
may form crystals, which can develop into stones.
A stone can be as small as a grain of sand or as large as a golf ball.
Many small stones pass naturally. Medium-sized stones are often crushed with
special "high-tech" equipment. Very large stones may require surgery.
The composition of the stone can help reveal its cause and often
suggest the form of treatment. There are basically three types of stones.
Most stones are calcium oxalate, then there are cystine stones and finally
infection stones.
Calcium oxalate stones are composed of a hard salt compound. These
are normally very small, smooth, round stones which often pass easily.
Calcium oxalate stones can often be controlled by watching your diet and
drinking lots of fluids.
The uncommon and inherited cystine stones are also dense and come from
too much amino acid in your urine. These stones normally require a lifetime
of medication, a high fluid intake, and an eye to avoiding certain foods.
The uric acid stone is cause by an over production of uric acid.
These stones can be prevented by drinking lots of fluids and avoiding a diet
with lots of meat. Like the cystine stone, the uric acid stone can be
dissolved with medication.
The stone most troublesome to the quad is the stone caused by repeated
bladder and kidney infections. The repeated infections change the chemical
balance of the urine. Treatment often requires antibiotics for several months
or years. Because of their jagged shape these stones are seldom passed easily
and often require removal.
Sometimes when the stone cannot be passed naturally or dissolved with
medication you may be a good candidate for ESWL. Better known as
Extracorporeal Shock Wave Lithotripsy, this technique safely and effectively
"shatters" without surgery.
There are several types of ESWL, but the principles are the same for
all. While you sit in a water bath or on a water cushion, a rapid series of
high-energy shock waves are fired through the water at your stone with
pinpoint accuracy. Without injury to your body, the stone then crumbles into
very fine sand particles, which then pass easily.
ESWL takes only about an hour and is often performed as an "in and
out" procedure. First, your doctor locates your stone with an x-ray or
ultrasound. You may or may not need general or local anesthesia, depending on
the type of ESWL machine used.
After several hours in recovery and a little blood in the urine most
people are free of stones in less than three months. Some individuals may need
additional ESWL treatments if their stones are extremely dense or large.
Kidney stones are now treated so successfully with drugs and
lithotripsy that there is seldom a requirement for surgical intervention.
But, being quads, many of us are often faced with the necessity of have
surgery before, after, or instead of the easy treatments.
If you have a stone in your ureter, it can usually be removed without
any cutting. The doc just slips a little tube into your ureter and "lassos"
the stone and removes it. This procedure can often be done on an outpatient
visit.
Stones larger than an inch in diameter require a procedure called
"percutaneous lithotripsy". This requires the doc to punch of few holes in
you and insert a couple of tubes. Through these tubes he sights your stone,
shatters it with the ultrasound shock waves, and removes the pieces. The
holes vary in diameter from the size of a small fountain pen to the size of a
garden hose.
The "percutaneous lithotripsy" procedure usually requires a short
hospital stay of 2- to 3-days and several follow-up visits.
The worst case scenario is a large staghorn stone in the kidney
pelvis. Individuals with these large or oddly located stones need open
surgery. This requires your doctor to make a 7- to 10-inch incision in your
side, open your kidney, and remove your stone.
This surgery often lasts for several hours, requires about 10 days in
the hospital, and a couple of months rest at home to recovery fully.
Getting rid of the stones is the first step in your treatment process.
You can reduce your risk of forming new stones by drinking lots of fluids,
taking any medications prescribed, and watching your diet.
FREEDOM WRITER
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Freedom Writer is a powerful, full-featured word processing program
for physically impaired persons who cannot use a standard computer keyboard.
The program features an "on screen" keyboard; characters or frequently used
words are selected directly with a mouse, joystick, or light pen. Selections
can also be made by scanning with a single switch or through voice input. The
program operates on IBM or IBM-compatible computers. For more info contact:
World Communications, 501 Glenmoor Circle, Milpitas, CA 95035; 408-262-2870.
A FISHY NOTE
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Researchers believe that salmon brains may help human spinal cord
injury research. The brain of the coho (silver) salmon undergoes a major
reorganization just before the salmon heads downstream on an odyssey that will
end 18 months later in the very stream in which it hatched. This fact could
unlock clues which could treat injuries to the brain or spinal cord in humans,
while at the same time unraveling the mysteries of how salmon find their way
home to spawn. For further info Call Dr. Sven O. E. Ebbesson, (907) 474-6197,
or Sea Grant Science Writer Doug Schneider, (907) 474-7449.
QUADRIPLEGIC SALESMAN
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If you saw him relaxing on the patio with his wife and two sons you
might not realize the Rocky Mount, N.C. native had sold $2.5 million worth of
homes during the past year or had received the Salesman of the Year award from
Ruby Braswell Realty.
Rather an impressive year for anyone to have achieved, yet it's even
more impressive when you consider 38-year-old Jack Langley accomplished all
that from the confines of a wheelchair and a hospital bed.
He was born on Easter Sunday 1948 -- an appropriate date for a man
whose life reflects hope, courage and the determination to start anew.
A car accident almost four years ago left Langley a quadriplegic.
"On July 8, 1982, we were returning from King's Dominion (amusement
park)," he said. "There was a tractor-trailer tire in the left lane. I lost
control. I was not wearing my seatbelt. I don't remember (after that). My
memory picks up at the hospital."
Langley spent 60 days in a hospital in Petersburg, Va., then 30 days
at Pitt Memorial in Greenville. He spent five months in the rehabilitation
center there.
But that was only the beginning.
"I don't have any sensation from my chest down," Langley said, then
went on to explain how a person generally shifts position when a lack of
circulation becomes noticeably uncomfortable -- when a leg seems to "fall
asleep."
But since Langley has no sensation, moving becomes a necessity rather
than a reflex. Without redistributing his weight, painful pressure sores can
develop.
To prevent this, he practices a system of "boosting," in which the
arms on his wheel chair are lowered, allowing him to move from side to side.
"I don't do that as frequently as I should," he said.
Langley was readmitted to the hospital last August for an operation on
a pressure sore.
"I was in the hospital from Aug. 28 to Dec. 24. I came home and was up
for a week when the incision line opened up," he said. Shortly after, another
pressure sore developed.
With the help of his insurance, Langley purchased a $23,000 air
floatation bed which, he hopes, will aid in the prevention and the healing of
these sores.
"I virtually have no use of my fingers," he said. "I can write with a
cuff. "It's great. It's a very versatile piece of equipment. I don't know what
we did before we had velcro," he said.
Although the accident left him physically weak, it didn't rob him of
his will to succeed.
A graduate of Methodist College in Fayetteville with a degree in
business administration and economics, Langley was licensed by the N.C. Real
Estate Licensing Board in 1977 and began selling a year later.
"Until I got into real estate I had not found a career I enjoyed a
great deal," he said. "It's so diverse. I'm always dealing with new people --
different financial backgrounds.
"An average work day can be quite varied. I go to the office, make my
calls, check on loans in progress, do detail work and then spend the majority
of my day on the telephone either talking with prospects or past clients
trying to find new prospects."
He joined Ruby Braswell Realty in November 1983.
"I was sales manager. Then in 1985, I decided to get out of management
and just sell," he said.
Langley's achievements last year actually took place in eight months
rather than 12. With the exception of one house, he completed his volume of
sales before he had to return to the hospital in August.
"I'm anxious to get back to work on a full-time basis," he said. "I
still work, but I'm not nearly as effective lying in a bed as I am when I'm
up.
"I am really more highly motivated to sell real estate because I have
fewer distractions. I can't play tennis or golf.
"There have been times when the struggle gets to seem insurmountable.
I had very intensive physical therapy. I had gotten so weak from lying flat.
But I've never had to look too far. I've tried to count my blessings rather
than my misfortunes."
DIAMOND STATE HEALTH PLAN (Medicaid Managed Care)
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Effective January 1, 1996 most Medicaid beneficiaries will be enrolled
in Managed Care Organizations (MCOs). If you are a person with a disability
and you are eligible for Medicaid and you do not have Medicare, then you will
be asked to select an MCO.
Other people who are not eligible for this program include those
people in the Long Term Care program and those people who are already in the
Home and Community waiver program.
Early in November you will receive a letter from the State's Health
Benefits Manager (HBM). You will be given a list of the Managed Care
Organizations available to you and you need to select one of these MCOs.
If you already have a doctor or provider with whom you have a good
relationship and they understand your specific challenge, then you should
select an MCO that contracts with your provider. The HBM can provide you with
that information.
You will continue to receive the same benefits that you receive now.
You will have the HBM to act as an advocate should you have a problem. You
may also call the Medicaid Advocate at your chosen MCO and you may always call
the State to discuss a problem.
This new program, Diamond State Health Plan, will give you the
advantage of a Primary Care Provider (PCP) to provide your primary and
preventive health care. This PCP will refer you to specialist and hospitals
should you need them. You should go to the emergency room only in a true
emergency situation and always keep your PCP informed.
Individuals with a spinal cord injury are considered to require
special treatment under the plan. They should contact the Health Benefits
Manager to arrange an MCO who covers all the physicians involved in providing
care.
If you have a challenge that you believe needs special treatment, the
State will review this on a case by case basis and may agree that the MCO you
have chosen will need to use a provider that does not contract with that MCO
to provide your care.
If you are eligible for the Diamond State Health Plan, you must select
an MCO and a Primary Care Provider. For more info call 1-302-577-4900.
EMPLOYEE OF THE YEAR
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James Fee Jr., a research engineer at the Alfred I. DuPont Institute,
was named Employee of the Year by the Governor's Committee on Employment of
People with Disabilities. Fee, whose work on assistive technology has improved
the quality of life of many Delawareans with disabilities, was honored at a
luncheon at the University of Delaware. He has a masters degree in mechanical
engineering and is engaged in research at the Applied Science and Engineering
Laboratories of the University of Delaware at the A. I. DuPont Institute. He
also has been involved in projects related to augmentative communications. Fee
can be reached via the Internet at fee@asel.udel.edu
THE AGING DRIVER
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A friend here in Delaware just discovered the freedom and thrill of
driving on his own. Another friend in Nebraska just decided that, at 51, he
was getting too old to be driving.
The aging process affects everyone's ability to drive. The disabled
driver, however, undergoes the aging process earlier due to stress on the body
caused by medications and surgeries or by pushing a wheelchair and other
activities the human body was not designed to do.
When cars and vans are first equipped for the disabled person it is
done based upon the driver's strength and range of motion at the time of
evaluation. For many disabled drivers, this can be close to 100% of their
ability. If drivers lose ability due to aging, it is important they realize
this and change the adaptive equipment to compensate. This is especially
important for drivers who are marginal in their ability to steer and brake
effectively.
There are several ways to prevent problems associated with the effects
of aging from interfering with your driving.
If you are taking medications, such as pain killers, antiarthritics,
and antispasticity medicine, use extreme caution and check with your doctor.
If you are over 55, have your eyes checked regularly.
Get a regular examination by an occupational therapist to detect any
problems that may be robbing you of strength and stamina. As part of this
examination have the flexibility of your shoulders and elbows checked.
Make sure you do regular range-of-motion exercises of your arms and
shoulders to retain your flexibility. This is important in order to retain
your full steering and braking ability.
Stop and think about the switching, steering, and braking functions of
the hand controls. If any of these feel uncomfortable or are difficult to
use, contact your equipment dealer or OT for help in making the controls
easier to use.
Check your wheelchair tiedowns. New tiedowns offer vastly improved
safety advantages over the ones available as recently as ten years ago.
When is the older driver unsafe? When is it time to stop driving?
Most experts agree that it is when the driver no longer feels safe and in
control of the vehicle. But, it is often difficult to make a determination.
The American Automobile Association (AAA) has a nice little booklet
which asks a series of questions related to driving performance. It then
explains the answers and tells why each question is important. Contact the
AAA near you and ask for "Drivers 55 Plus: Testing Your Own Performance."
If you feel you can still drive but might need some improvements in
your equipment, then contact your equipment dealer or OT for help.
ASK THE EXPERTS
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The one thing needed by many disabled individuals is answers to
questions about their disability. The information may not be medical in
nature, but could be a combination of questions concerning fears and the
future.
Many agencies that deal with the variety of disabilities that are now
identified can answer questions. However, callers may have to wait for a call
back while the question is researched by an employee or volunteer.
People who belong to a support group can call another member to ask
questions and quite likely get an immediate response.
But if you are newly injured, access to a support group and experts
who have lived with your problem may not be available.
Yet one resource remains. The National Spinal Cord Injury Hotline, a
toll-free information and referral service, is available to individuals who
have sustained a traumatic spinal cord injury.
The group was founded in 1984 by Karen Colvin, who had a spinal cord
injury in 1983. Colvin was a nurse for eight years. When she returned home
from rehabilitation, she found that she had a wealth of information gathered
from her husband, rehabilitation resources and elsewhere.
She didn't want to discard anything, so she began the hot line service
to share the information with other injured people.
The service was originally financed by the University of Maryland and
then by the American Paralysis Association. Since September 1994, it has been
fully financed by the Paralyzed Veterans of America.
The hotline fields questions covering all areas of injury, such as
immediate care, personal hygiene, pain, wheelchairs, recreation and fertility.
The hotline is staffed by 500 volunteer peer counselors. Counselors
who are not disabled may be a parent, spouse or sibling who has learned about
the needs of the disabled.
Referrals are also made to professionals with spinal cord injury
expertise, as well as to rehabilitation facilities. Literature is available,
as is information on organizations within the caller's area.
For further information contact the National Spinal Cord Injury
Hotline, 2201 Argonne Drive, Baltimore, MD 21218 or call 1-800-526-3456.
QUAD IS MS. WHEELCHAIR NEW JERSEY
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Quadriplegic Nancy Starnes of Sparta, N.J. has been named Ms.
Wheelchair New Jersey.
Unlike the Miss America contest, the Ms Wheelchair title is bestowed
upon a woman who can become a voice for people with disabilities. The
contestants are judged on personal achievements and accomplishments since the
onset of their disability. They are also judged on community relations and
personal presentations and demeanor.
Starnes sustained a spinal cord injury in the crash of a private plane
in 1973. Following rehab, she continued to meet the challenges of having a
family and pursuing a career.
She left her stock brokerage firm to enter the world of politics and
became the first woman to serve on Sparta's Town Council. In 1984, she was
elected Mayor. She established the Office for the Disabled as part of the
Sussex County government and currently serves as Director of the Morris County
Office for the Disabled. Starnes has extensive experience in television on a
local and nation level.
In addition to her title as Ms. Wheelchair New Jersey, Nancy Starnes
has been named Women of the Year by Soroptomist Internation and was awarded
the Women of Achievement by the N.J. Business & Professional Women. Nancy
will represent New Jersey in the National Ms. Wheelchair Contest in Anaheim,
CA.
GET YOUR FLU SHOT NOW!
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Two years ago I ended up in the hospital and on full oxygen because
the flu bug I got turned into pneumonia.
This is the time to get your flu shots. Flu shots will be available
throughout the country and many communities are making an all out effort to
reach everyone.
Many private doctors provide the annual immunization, but the shots
may be available at a lower cost at local clinics, drug stores, senior
centers, and public health outreach programs.
The American Lung Association and most public health agencies are
targeting high risk individuals and the shots may be free or less than $10.
The VNA is operating many outreach clinics and is not charging the
elderly or disabled who have Medicare Part B. The VNA Flu Prevention Campaign
is sponsored by nine corporations.
Although the word "flu" is used for stomach and intestinal bugs, mild
feverish illnesses and bad colds, and what doctors call "flu-like illness,"
true influenza is really an acute respiratory illness.
Influenza begins with a sudden onset of high fever and run-over
feeling. Muscle aches and headaches are common, and then bad cold symptoms:
runny nose, sore throat and dry cough. Symptoms last up to a week and may
leave feeling tired and weak for another week or two.
For the quadriplegic and the other disabled, flu can be fatal and lead
to pneumonia, which also can be fatal. During a flu-epidemic year influenza
can account for 20,000 deaths.
There are two types of flu. Both mutate into different strains, and
each year the flu viruses making the rounds are different from those of the
year before. This is why a new flu shot is needed each year.
A flu shot will not cause you to get the flu. Less than a third of
those receiving the flu shot will experience any ill effects. At the worse
the flu shot might cause some soreness around the injection site and maybe a
slight fever for a day or two. If you are allergic to eggs there is also a
slight chance that you may have an allergic reaction to the flu shot.
A flu shot does not guarantee that you will not get the flu, but it
does work for about 70 percent of the people, and reduces the effects in the
other 30 percent if they become infected.
Getting a flu shot be a yearly event that you schedule when the leaves
start to turn and the frost is one the pumpkin.
FREE OUR PEOPLE
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Speaker of the House of Representatives Newt Gingrich met with a
delegation of disability activists from ADAPT (American Disabled for Attendant
Programs) recently in the Capitol Rotunda to discuss redesigning Medicaid
funded long term care and support for a national attendant services bill.
Speaker Gingrich agreed to sponsor a national attendant services bill
called CASA, Community Attendant Services Act, and to include ADAPT in efforts
to redesign Medicaid and long term care.
In addition Speaker Gingrich reaffirmed his belief in community-based
services as the preferred means of providing long term care. He agreed that
institutionalization should be the last option and that people with
disabilities should have real choices in the community.
Speaker Gingrich's said his office would be releasing a press
statement announcing his endorsement of the Community First policy and the
principles included in CASA.
ADAPT's representatives traveled to the meeting from Georgia,
Colorado, Pennsylvania, Kansas, Kentucky, Illinois, Michigan, Massachusetts,
Utah, Tennessee, Texas, and Wisconsin.
ADAPT, a grassroots, disability rights organization, has waged a long
fight for a national attendant services program. When Speaker Gingrich refused
to meet with the group, and appeared to withdraw his previous support for
these reforms, ADAPT staged two days of protest at the Speaker's Capitol and
district offices, and at his Capitol hill home.
"This is a historic meeting. The disability community has worked long
and hard for attendant services. We are very excited the Speaker has agreed
to support us and work with us" said Mark Johnson, of Georgia ADAPT. "We will
be making dramatic changes for the better if the principles included in our
proposed legislation, CASA (the Community Attendant Services Act), become a
part of this year's legislative accomplishments. It's time to shift from talk
to action" Johnson added.
Attendant services are community-based support services for people
with disabilities, old and young, and include help with activities like:
dressing, bathing, eating, toileting and personal care. These community-based
attendant services allow people with disabilities to live at home instead of
being forced into nursing homes and other institutions.
ADAPT estimates that the cost of community-based services is about a
quarter of the cost of institutional services.
TELL YOUR FRIENDS
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Tell your friends about this newsletter. If they would like their name
added to the mailing list send me their address with the form below. THE
SPINAL COLUMN will appear four (4) times a year. A donation of $12 will
help to pay the expenses involved. Your suggestions and comments are
welcome. Send your inquires to: Joe Chamberlain, THE SPINAL COLUMN, P. O.
Box 10966, Wilmington, DE 19850. or CompuServe Joe Chamberlain 72123,1151
or spinal@omni.voicenet.com
Name ____________________________
Address _______________________
City ________________ State ___ Zip _________
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:-) Internet: spinal@omni.voicenet.com
| CompuServe 72123,1151
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* |_____ Joe Chamberlain
* \ P. O. Box 10966
* * \__ Wilmington, DE 19850
* * Ph. 302-323-1790
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