CODI: Cornucopia of Disability Information T H E S P I N A L C O L U M N
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                     T H E   S P I N A L   C O L U M N
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SUMMER  1995                                                    Vol.5  No. 2
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JUST A THOUGHT
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We are bad news junkies.

The disabled population of this country has made great progress in obtaining
equal access.  Designated handicapped parking spaces, ramps, accessible
bathrooms, and adaptive requirements in the workplace.

Back in 1966 when I started college there were no ramps, no accessible
bathroom, and no designated parking spaces.  In fact, the university denied
that they had to make any accommodations for me at all.

Since then we have seen the passage of many state and federal laws empowering
us to move out into the world and become productive citizens.

The disabled individual is everywhere.  They hold positions as TV journalists,
teachers, office workers, doctors, lawyers, and thousands of other
occupations.

Awareness of such gains is not widespread, however.  This is partly because
the leadership of disability groups generally do not admit to significant
progress.

Never is heard an encouraging word.  No matter how much progress is being made
it is always brushed aside, and fresh evidence of discrimination is detected.

We pay a high price for this doom and gloom outlook. Progress is made to seem
hopeless.  The disabled come to think that the ablebodied population will
never let us in, even as the doors open wider.

We are rapidly running out of barriers.  We have made great strides and now we
must take advantage of the opportunities.

Within 150 miles of me there are three television journalists that are seen on
the major networks.  One of these individuals is a C4/5 quad with very limited
arm movement.

There is a serious discrepancy between the progress being made and the doom
and gloom rhetoric.  Look around and judge the progress and opportunities for
yourselves.

DISABLED IN CALIFORNIA
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A new law in California provides for a 30-day parking permit for any disabled
visitor to the state who already has either a permanent permit or special
license plates in his home state.  To obtain an application contact the
Department of Motor Vehicles, Office of Communications, 2415 First Avenue,
Sacramento, Calif. 95818  Tel. 916-657-6437

RESEARCH AT DUKE UNIVERSITY
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by Dr. Marcia J. Riggott

How do neurons processes that range in length from one hundredth of an inch to
several feet -- and then make synaptic contact with a precise synaptic
partner?  This question is vital to understanding the growth of the nervous
system whether during development, or during repair following traumatic injury
or neurodegeneration due to disease.

Somehow neurons must survive against competitive odds, find their target and
establish communication.  Major strides in developmental neurobiology have
shown us that cell surface receptors for growth factors and extracellular
matrix proteins play major roles in these activities.

It seems that the most important bioactive compounds are the proteins and
lipids that act as receptors and transducers of biological activity.  One
class of compounds to show great promise for their ability to enhance neurite
outgrowth are the gangliosides.

In my research, I am challenged to determine how gangliosides modulate the
activity of growth factor and extracellular matrix receptor activation.  I do
this by generating monoclonal antibodies that minic specific gangliosides.
With these antibodies, I can probe the function of growth factor and
extracellular matrix receptors in bioassays, and then identify the specific
proteins or lipids involved using biochemical procedures.

My current model for these studies is to understand the function of the
ganglioside GM-1, which modulates the activity of both growth factors and
extracellular matrix compounds by binding to their receptors to activate or
inactivate them.  In recent studies using a series of anti-idiotypic
antibodies that minic the structure and function of the ganglioside GM-1, I
have shown that gangliosides can modulate the activity of growth factors and
extracellular matrix factors by binding to cell surface proteins.

Current studies underway use "in vitro" bioassays to determine which growth
factors are modulated by gangliosides.  This finding is important for two
reasons.  It provides new evidence that gangliosides can act by binding to
membrane proteins directly in contrast to the controversial hypothesis that
gangliosides intercalate into the membrane to exert their effects.  The second
reason is that now we have a new tool to exploit the therapeutic properties of
GM-1, a strong treatment for the amelioration of nerve injury due to trauma or
disease.

The practical application of this work is demonstrated by the use of "in vivo"
models of peripheral nerve and spinal cord regeneration.  In my studies,
sciatic nerve injury repaired with a nerve graft carrying anti-idiotypic
ganglioside antibody.  In addition to the role of acting as a source of
nourishing antibody, the graft provides a basement membrane conduit to support
and guide the growth of the regenerating nerve.

These "in vivo" experiments naturally follow the "in vitro" bioassays as the
next step in designing paradigms that use growth factors and extracellular
matrix proteins to optimize functional nerve regeneration.  The "in vivo"
experiments will determine whether these antibodies enhance regrowth of the
peripheral nerve or spinal cord following traumatic injury or
neurodegeneration due to disease.  From these results, therapeutic agents can
be developed to maximize the functional regrowth of damaged nerves.

My work, therefore, is closely linked to the discovery of new therapeutic
agents.  In addition to the design of drugs based on the structure of the
anti-idiotypic ganglioside antibodies, the antibodies in themselves offer a
number of advantages over ganglioside treatment currently in use.

Antibody or antibody-based agents would avoid the complications of direct
administration of gangliosides.  In addition, their activity is long lived
(weeks to months) compared to gangliosides (hours to days).  High affinity
antibodies promise to be more effective that the original ganglioside in
activating growth factor and extracellular matrix receptors.

The idea that an immunoglobulin can function as a drug could lead to
therapeutics for trauma and neurodegenrative diseases including montoneuron
neuropathy, ALS, Multiple Sclerosis, Alzheimer's and Parkinson's diseases.
Therefore, these innovative probes for the biochemical study of ganglioside
action represent a new class of potential therapeutic agents for the
enhancement of nerve regeneration.

HONEY: NATURE'S HEALER
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The next time you get a slight scrape take a lesson from the ancient Egyptians
and dab honey on the sore area.  Research shows that honey can speed the
healing of wounds -- sometimes working better than antibiotics.

All sugars, including honey, have bacteria fighting properties. Sugar absorbs
the water that bacteria need to multiply and reduces swelling by drawing fluid
from the tissues.

For a mild scrape a thin coat of honey under a light bandage will speed
healing.

NOT A SUPERHERO, JUST A SPINAL-CORD INJURY SURVIVOR
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by John Tschida

When I heard Christopher Reeve, (Superman, of all people), had sustained a
cervical neck injury, a chill ran down my spine.  It ran about to the middle
of my back, which is where most of my sensation stops.

I, too, have a spinal cord injury.  On Sept. 9, 1993, I not so gracefully
leapt the handlebars of my mountain bike on my way to work at the State
Capitol and was rudely introduced to a lamp post in the shadow of St. Paul's
Cathedral.  I have no memory of the accident.  The ugly name for my condition
is quadriplegia.  No finger movement and limited arm function.  I type with
splints covering my wrists, using a two-finger hunt and peck equivalent.

Mr. Reeve, whose injury came just below the brain at the first and second
levels of the cervical spine, was not as lucky.  He breathes with the
assistance of a ventilator, and this may not change.  He is paralyzed from the
neck down.  The higher the injury in the neck, the more the body shuts down.
At such a high level, the diaphragm muscles don't work.  Nothing below the
neck "works" anymore.  I can't imagine a more profound change in lifestyle.

The print and broadcast journalists nationwide are fixated on full recovery:
they want to know when he is going to walk again.

While admitting the injury was serious, one national news organization
immediately sought the advice of the orthopedic surgeon who treated Dennis
Byrd, the former New York Jet football player who also injured his spine, but
now walks.

Although less the 1 percent of those with spinal injuries will regain complete
mobility, it is the Dennis Byrd story that most Americans now identify with a
broken neck.

(While hospitalized I received three copies of Byrd's book "Rise and Walk"
from well-intentioned family members.)

There is implicit in the book's title both a command and an underlying
implication: try hard enough and you'll get better.

Such misconceptions, reinforced by TV movies of the week, where at 9:55 p.m.
the wheelchair is discarded and viewers circulate a box of tissues as the
disability is conquered, are hard to combat.  Those of us still seated in
wheelchairs have a hard time flinging facts to refute such prime time tales
"based on a true story."

Reeve himself played a paraplegic police officer who was "cured" by show's
end.  It was broadcast May 27, the date of Reeve's injury.  To me that's a
degree of irony far greater than the fact Superman sustained such an injury.

Truth be told, there are about 10,000 new spinal cord injuries in the United
States each year, more than 80 percent of them males. The prime age for a
spinal cord injury is 19.  About half of those injuries happen in motor
vehicle accidents.

Contrary to myth, a "severing" of the spinal cord is quite rare, and isn't at
all necessary to result in permanent paralysis. Bruising, compressing, or
hyperextending, in Reeve's case, can accomplish the same tragic result.

You don't hear much about spinal cord injuries on the news, or read about them
in the paper.  But if you look for the code words, such as "serious injury" or
"critical condition" you can find them between the lines.

To date there is no cure.

The 5,000-year-old Edwin Smith papyrus is believed to be the oldest document
-detailing the efforts of ancient Egyptians - to fix the damaged spine.  "Thou
should bind it with meat the first day, thou shall loose the bandages and
apply grease to his head as far as the neck," it says.  Treatment in
subsequent days is to be with honey, until the patient recovers.

Ultimately, the Egyptians conceded defeat, admitting the treatment was
ineffective.  Determination and willpower are needed as survival skills to
forge a productive life following a spinal cord injury.  But in the face of
contrary medical evidence, it's curative powers equal the greased head and
repeated honey application in restoring neurological function.

Yes, Virginia, such an injury can happen to anyone.  No mathematical or
spiritual equation exists to factor wealth, fame, or even the moral bearing of
the person injured.  Those of us who survive, return to our jobs and families.
Our healing is in the form of acceptance and endurance as we redefine our
"normal" lives.  We are not heroes, and certainly are not super heroes. We're
survivors, plain and simple.

CARF ACCREDITATION
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Choosing a rehab facility that best meets your needs requires more than just
careful consideration and comparison.  It requires knowledge of what to look
for.

A facility with the stamp of approval from organizations such as the
Commission on Accreditation of Rehabilitation Facilities (CARF) and the Joint
Commission of Accreditation of Healthcare Organizations (JCAHO) have met
strict industry standards.

CARF is a national not-for-profit organization that has been accrediting
rehabilitation facilities for 27 years.

Currently, CARF has accredited more than 3,300 facilities across the country.
On average over the last four years, only 87 percent of programs that applied
for accreditation have been accepted.

Accreditation is extremely beneficial to consumers because the care being
provided at CARF accredited facilities has been found to meet industry
standards by an impartial, third party judge.  It ensures that a monitoring
system is in place and that requires that both the patients and families are
involved in the decision- making process.

According to CARF, "Accreditation provides organizations with a guide they can
use to evaluate and improve themselves. Externally, the organization has the
ability not only to say, but also to demonstrate, that it is efficient and
effective."

To obtain CARF accreditation, a facility voluntarily approaches CARF to begin
the accrediting process.  CARF provides a standards manual that outlines
outcome goals and industry standards.

Next, the facility must perform a self-study which can take from three months
to two years to complete.  When a facility feels it meets the standards
adequately, it will apply for accreditation.

Approximately three months later, CARF sends out a survey team to observe the
facility's practices and its compliance with industry standards.  Depending on
the level of compliance of the facility, accreditation will be granted for
either one year or three years. At the end of this period the entire process
begins again.

The repeated process ensures that the facility continues to meet CARF
standards.  The accreditation system addresses the performance of the facility
in meeting the needs of the patient. The ultimate focus is on the
rehabilitative outcomes.

CHOOSING THE RIGHT DOCTOR
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I have changed doctors several times over the past ten years because I was not
satisfied with their service.  But, many people remain trapped in an
unsatisfactory doctor-patient relationship because of habit or loyalty or a
feeling that the doctor must know best.

I just finished reading "Examining Your Doctor, A Patient's Guide to Avoiding
Harmful Medical Care" by Dr. Timothy B. McCall, M.D. His book is meant to
help patients expect the very best from their physicians, even in these days
of impersonal HMOs and shrinking medical choices.

"Most people passively follow the dictates of their doctors," writes McCall, a
practicing internist in the Boston area. "People who wouldn't buy a toaster
without consulting Consumer Reports become meek and deferential in the
presence of a stethoscope and a long white coat."

He offers suggestions on picking a doctor (friends and family don't always
know best); on evaluating whether your doctor is spending enough time with you
(a medical exam should include a lengthy and detailed interview); and
determining if the doctor is ordering the right tests (the best test may be no
test).

McCall sprinkles the book with case histories from his experience.  The
stories are not examples of gross medical negligence, but of more typical
cases in which a patient's best interests aren't served because the doctor is
rushed or practicing defensive medicine.  (Meet Martha, who spent $300 on
tests to be told she had a cold.)

The book also describes what constitutes good preventive medicine - -
something that everyone agrees is a fine thing, but too few doctors, and
patients, actually subscribe to.

McCall doesn't want patients to become suspicious of their doctors.  He does
want them to be well informed, questioning and demanding consumers.

He writes, be assertive and cultivate an attitude of healthy skepticism.

TALKING BOOKS
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The National Library Service for the Blind and Physically Handicapped (NLS),
Library of Congress, provides the free loan of recorded and braille books and
magazines.  They also provide specially designed playback equipment to
residents of the United States who are unable to read or use standard print
materials because of visual or physical impairment.

NLS administers the program nationally while direct service to eligible
individuals and institutions is the responsibility of cooperating libraries in
the various states.

Information about any aspect of the NLS/BPH free library service, including
application forms and addresses of cooperating libraries may be obtained by
contacting you local library.

You may also contact the National Library Service for Blind & Physically
Handicapped at Reference Section, Library of Congress, Washington, DC  20542.
Tel. (202) 707-9275 or (202) 707-5100 FAX:  (202) 707-0712  TDD:  (202)
707-0744.

MURDER ON WHEELS
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Three time mystery novelist Kevin Robinson has just found a 150 copies of his
second book, MALL RATS sitting in a bookstore warehouse.  I've written about
all three of his books, but MALL RATS is by far the most entertaining.  His
paraplegic reporter/sleuth Stick Foster comes rolling back into action looking
for clues which will reveal the identity of a murderer.

Using a one finger typing style, quadriplegic, Kevin Robinson has created
another thrilling mystery with a set of characters which will pull you into
their fast-paced world.  Robinson is definitely a raising new star in the
world of mystery writers.

Kevin grew up in Wallkill, NY where he attended the high school where his
father was principal.  He ran track, played softball, and did some diving.
His graduation was highlighted when his father, then superintendent of the
District, awarded his diploma personally.

He met his wife, Shelly, while attending Geneva College in western
Pennsylvania, where he earned a degree in education, and eventually settled in
central Florida.  His employment history includes such varied jobs as carpet
installer, truck driver, surveyor, construction worker, and commercial
crabber.

In 1975 while teaching at a ranch for troubled youth Robinson fell through a
dock railing into 12 feet of water and broke his neck.  He was hospitalize for
three months and then transferred to Craig to learn the facts of living life
as a quadriplegic.

Robinson is fortunate to have limited use of his arms and fingers.  He has
enough mobility to drive a specially equipped car and work five to six hours
each day.

His strong faith and the hard work ethic he learned as an athlete helped him
through his rehabilitation.  These, combined with the loving support and
encouragement from his wife, Shelly, has made all the difference in the world
for Robinson.

Kevin makes his home in Lawrence, Kansas.  He lives on his income an a
free-lance writer and Social Security disability payments.

In Robinson's book, MALL RATS, Stick Foster becomes deeply involved with
murder when a guest at his wedding suddenly dies from an overdose of street
drugs poured into her punch. Particularly painful is the fact that all the
evidence seems to point to a teenager Foster has befriended as the killer.

The far out characters in Kevin's books have an uncanny resemblance to his
friends and relatives.  For example, the chief of mall security, Lenny Gordon,
is known as "Pussyfoot," a nickname given to Robinson's father when he was a
high school principal.

Billy 'Bart' Simpson and the other Mall Rats are a composite of characters
which have inhabited Robinson's life.  The Robinson home has always had an
open door policy for young people and Robinson enjoys exploring their lives.

MALL RATS takes place at an Orlando area shopping mall and exposes the reader
to the Central Florida area beyond Mickey Mouse and Disney.

The mystery -- with gunplay, alligators, love scenes, and the Mall Rats
dressed in a kaleidoscope of colors -- races to a solution filled with
primitive violence and tenderness.

Not since Ironside, the television detective played by Raymond Burr in the
1960s,  have we experience a sleuth the stature of Stick Foster.

In Stick Foster, Robinson has created a character with whom the reader can
identify.  Stick Foster is a combination of Robinson himself, his late father,
and two Florida friends.  "Publisher's Weekly" described Stick Foster as "an
upbeat, confident and very likable amateur sleuth who becomes a hero while
realistically working around his disability."

Kevin has a fluid writing style and a strong plot which pulls the reader into
the action.  Robinson has a great approach, great attitude, terrific style,
excellent dialogue, sense of place, and sense of reality.  It's hard to think
of anyone better at what he does.

Robinson is a member of the Mystery Writers of America, the American Crime
Writers League, and The Authors Guild.  He is the recipient of several awards
and his work has appeared in over 40 regional and national periodicals.

You can read the other "Stick Foster" mysteries Split Seconds and A Matter of
Perspective at your local library.  You can also read Kevin weekly in the
"Detroit Free Press" where he writes about disability issues.

Robinson hopes to produce several more Stick Foster mysteries. He has at least
five more titled and outlined and is presently at work on Equal Access.

But for a real treat order an autographed first edition copy of MALL RATS
direct from the author.  Send a check for $12 to Kevin Robinson, P. O. Box
3685, Lawrence, KS 66046.

DEADLY SUMMER HEAT
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When the temperatures creep into the 90s and above, summer can turn deadly.

The handicapped, and especially quads, are very susceptible to the heat.  We
quads are often without the body's temperature- regulating system thereby
making us high risk candidates for sunstroke or heatstroke.  To make matters
worse we are often deprived of the cooling effects of sweating.

In the recent heat wave that hit the east coast my home and 35,000 of my
neighbors lost power in a severe thunderstorm.  Near the end of this 50 hour
ordeal I was getting desperate and found myself fighting frantically to avoid
heat exhaustion.

Heat exhaustion results from prolonged exposure to heat, often with high
humidity.  Symptoms often begin suddenly and often include low blood pressure,
headaches, and nausea.

One step above heat exhaustion is heatstroke.  Heatstroke is a medical
emergency which can lead rapidly to death!

In Heatstroke, the body's temperature regulating system totally fails and
internal body temperature often rise as high as 108 degrees.  The skin becomes
dry, hot and red; the urine is dark; pupils are small; and the pulse is rapid
and weak.

Air conditioning or, at the very least, electric fans may be life savers in
extreme heat conditions.  But without power these are unavailable.

The next best line of defense is liquids.

Drink plenty of non-alcoholic liquids and avoid caffeine.  I put away liters
of ice-cold lemonade and diet/caffeine free Pepsi during those two days.  A
friend likes to drink is iced Gatorade

During the power failure and heatwave I resorted to treating the outside of
the old body with liquids as well.  I removed most of my clothes, bathed in
cool water, and applied a cool wash cloth to my face, neck, and head.

I have a little ice chest, just big enough for a six-pack, which I filled with
ice and and a few wet wash clothes.  By slapping these rags to my face, neck,
head, belly, and back I cool off slightly and managed to survive.

This time my fight with heat exhaustion was because of a power failure.  In
the past it has been caused by my being too dumb to come in out of the sun
while at the pool or car race.

Protect yourself by learning the warning signs and taking action quickly.
Contact Ask-a-Nurse in your area or the local Red Cross for a pamphlet on the
danger.

GOOD DENTAL HEALTH
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The National Oral Health Information Clearinghouse (NOHIC) is a new central
resource for people with special oral health care needs.  NOHIC can assist
individuals with physical or mental disabilities who are having difficulty
practicing good oral hygiene or finding professionals who are trained to treat
them. Fact sheets, brochures, and related information are available upon
request.  Contact NOHIC at One NOHIC Way, Bethesda, MD 20892-3500.  Tel.
301-402-7364

NSCIA ANNUAL CONVENTION
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Look out Miami!

The National Spinal Cord Injury Association's 1995 annual convention will be
held at the Hyatt Regency in Miami, FL on September 29 to October 1, 1995.

The theme will be "Looking Toward the Year 2000."

Among several new programs are Future Search, a preconvention workshop for
NSCIA chapters; three day long educational symposiums; an evening film
festival; recreational outings to Miami's South Beach; and more.

People with spinal cord injury, nurse case managers, physical and occupational
therapists, catastrophic-injury professionals, and physicians are invited.

The convention will feature an exhibit hall with 35 booths displaying the
latest in adaptive devices, durable medical equipment and supplies.

The day-long symposium on research to be held on September 29th will feature
Dr. Paul Reier as the keynote speaker.

Dr. Marca Sipski will coordination Saturday's day-long symposium on sexuality
and fertility.

Sunday personnel from Craig Hospital will present a symposium on aging and Dr.
J. D. Shea will do a presentation on the treatment and prevention of decubiti.

For registration forms or more information contact the NSCIA at
1-800-962-9629.

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
    *|----
 *   |_____             Joe Chamberlain
*          \            P. O. Box 10966
 *       *  \__         Wilmington, DE 19850
    *  *                Ph.  302-323-1790
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