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New
Commission Member
Jimmy
Ashley has been appointed to the
Commission by Governor Huckebee.
Governor
Mike Huckabee appointed Jimmy Ashley to serve as a member of the Arkansas
Spinal Cord Commission on December 4, 2001. There are five Commission
Members, each serving a ten-year term, who oversee the agency’s goals,
policies and services.
Jimmy,
a native Arkansan, sustained his spinal cord injury from a gunshot wound
while he was on duty as a Mississippi County Deputy Sheriff 21 years ago.
He and his wife Chris, a Physical Therapist, live in Jonesboro where Jimmy
is very active in his community, serving on the HealthSouth Rehabilitation
Hospital Advisory Board, a VIP volunteer with the local police department
and a member of the Fraternal Order of the Eagle.
He is
an active outdoorsman and has acted as a guiding force in the Arkansas
Disabled Sportsman Association, organizing over a dozen disabled hunts
this season in the state and presently serving as Secretary-Treasurer
of the association. A longtime bowler, Jimmy also serves as Vice Chair
of the American Wheelchair Bowling Association.
We hope
he will find time to share his experience and expertise as a member of
the Commission. Jimmy replaces Russell Patton, III of Jonesboro, the longest
serving member of the Commission, whose tenure stretched from 1985 to
2001.
Please
join the ASCC Members and staff in welcoming Jimmy to the Commission.
Top
10 New Year Resolutions
for Individuals with SCD
The
year 2002 is here—a new beginning! This is the time so many of us make
our list of resolutions to become better persons. The infamous list of
things we know we could do, should do—and from this day forward, are gonna
do. Here is a list of resolutions suggested for persons with spinal cord
disabilities (SCD).
To Be
Done Daily
1.
I will smile hard at least three times a day.
2. I will maintain my body’s scheduled need for range of motion and
pressure relief.
3. I will eat at least one meal that is nutritious and good for me.
To Be
Done Weekly
4. I will
call and check on a friend or family member I haven’t heard from in
a while.
5. I will
take at least one hour of quiet time to pause and reflect.
6. I will do one thing that I usually keep putting off, but should be
doing.
To Be
Done Monthly
7. I will get out of my home to go and do something new.
8. I will treat myself to something new that is affordable just because
I’m worth it.
To Be
Done Quarterly
9. I will call my Case Manager at ASCC and let him/her know how things
are going for me.
To Be Done
Annually
10. I will make and keep an appointment to see my SCD doctor for an annual
checkup.
Good
luck and best wishes for a Happy and Healthy New Year!
Newport,
AR Support Group
Dear
Editor:
I am
a VISTA Volunteer with the Arkansas Disability Coalition and have formed
a new support group in Newport, AR for persons with central nervous system
disorders (spinal cord injury, spina bifida, traumatic brain injury, MS,
CP, etc.). Meetings are held at 7:00 p.m. on
the first Thursday of each month at Village Creek Apartments
Community Room, 1707 McLarty, Newport, AR.
A support
group is a great place to share information, ideas and experiences. The
meetings are open to individuals with CNS disorders, their family and
caregivers. Please join us!
For
more information, contact me care of AR Disability Coalition at 1-800-223-1330
(voice/TDD), e-mail: rpridmor@ipa.net
Richard
Pridmore
VISTA Volunteer
Arkansas Disability Coalition
From
the Director
By
Cheryl L. Vines, ASCC Executive Director
Good...Fast...Cheap...Pick
2! I was listening to Dr. John Banja, a Medical Ethicist at Emory University,
speak at a conference I attended. He was talking about ethics and the
provision of health care in America. What he said was, it all comes down
to those three, and you only get two! At best!
It took
a while for the concept to sink in. After all, we live in the most prosperous
country in the world—shouldn’t we expect good, fast and cheap health care?
But, as I thought of it in my own experience, it was true! If I use my
HMO it is cheap and usually good, but seldom fast. When I need something
fast (and of course, I always want good), it isn’t cheap. The same thing
likely applies with the services the Commission purchases and provides.
We try to get good quality equipment and the best price—and it never seems
fast! If it’s fast—well, you see what I mean.
So,
what was Dr. Banja’s message? I kept waiting for him to say “pick two”
wasn’t ethical—that we are entitled to all three—he didn’t! Basically,
what he said was that if you have to pick two, make sure you make a good,
informed choice! What does that mean? If you want good and cheap, plan
ahead; it won’t be fast. If you want fast and cheap, be prepared to fight
it out to get quality. If you want good and fast, expect to pay more!
Simple as that? Sad story to start off the new year? No, just a reality
check! Something to think about!
Now,
if you want good, fast AND cheap, mark your calendar for May
31, 2002, the ASCC Conference at the C.A.Vines 4-H Center.
It is shaping up to be our best one yet! Hope to see you there!
With
Thanks
Donations
this quarter from:
Conway
Physical Therapy Clinic
Dana Farrar
Don Koen
Rick & Judi Layton
Mary Rodenbaugh
In Memory of L.J. Prestridge, Jr.
Melba Gates
John & Margie Fraser & family
In Memory of Marie Sullivan
Mr.
& Mrs. Herbert H. McAdams II
ASCC
accepts tax deductible donations. The generosity of the many individuals
and families, who over the years have made memorial donations, is greatly
appreciated. Contributions are used to assist our clients through purchases
of equipment and educational resources.
If you
would like to make a contribution, please contact the Commission at 501-296-1788
/ 800-459-1517 (voice) / 501-296-1794
(TDD), or send your donation to:
AR
Spinal Cord Commission
1501 N. University, Suite 470
Little Rock, AR 72207
Staff Changes in the ASCC
Magnolia Office
Welcome
Felicia Rufus (left) and congratulations
to Janet White (right) in Magnolia!
Janet
White has assumed the duties of Case Manager since the retirement of Annie
McKnight. Janet has been employed with the Commission since 1987, so her
familiarity with the Southwest Arkansas caseload is a definite asset.
For many years clients have been talking with Janet when they call the
Magnolia office, and now they will have the opportunity to meet her in
person as she begins providing Case Management services.
While
working full-time Janet obtained her degree in 1997 from Southern Arkansas
University. Her determination and years of persistence can now be channeled
into the role of Case Manager. Janet has already begun her quest to meet
the individuals in the ten counties she serves.
Felicia
Rufus has joined the Magnolia office and will be providing secretarial
support to both Janet and Evelyn Wainwright. Her specialized training
in Office Systems Technology from the University of Arkansas Community
College at Hope is a welcome asset to the agency. Felicia’s enthusiasm
and positive attitude are qualities soon to be shared with anyone calling
the Magnolia office.
The
ASCC staff extends congratulations to Janet on her promotion and a hearty
welcome to Felicia!
Harrison
Miniconference
Edgardo
Pineda (center) is very happy
to have won the Quickie wheelchair!
Living
With Spinal Cord Injury: An Update,
our second miniconference of the year, was held at the J. P. Hammerschmidt
Conference Center of North Arkansas Community College in Harrison on October
12, 2001. Over 65 people attended the daylong workshop to hear speakers
discuss topics including aging with a spinal cord injury, wheelchair selection,
personal training and fitness and new options in bowel and bladder functions.
In addition, participants were able to watch mouthstick painters Dale
Tabor and Dana Wolf demonstrate their skills. Edgardo Pineda (pictured
above) of DeQueen was the winner of the drawing for a new Quickie
wheelchair donated by Sunrise Medical, Inc.
Telecommunications
Access Program
Expands Services
The
Telecommunications Access Program (TAP) is a public service telecommunications
equipment distribution program established by the Telecommunications Act
of 1995 through Arkansas Rehabilitation Services (ARS). “The purpose of
the program is to provide adaptive equipment to assist Arkansans with
disabilities in accessing basic telecommunication services,” said ARS
Commissioner John Wyvill. “The program has primarliy served persons who
are hearing impaired, but the program was expanded in the 2001 legislative
session to include other Arkansans whose disabilities limit their operation
of standard telephone equipment.”
This
means persons with spinal cord disabilites who have limited hand or arm
function that would prevent them from independently using a telephone
may be able to obtain adaptions (such as a speaker phone). In order to
be eligible for the program, the person must be a resident of the state
of Arkansas, meet program financial eligibility (household income under
$50,000 per year), have present phone service in the home and be certified
as having an eligible disability.
Once
an individual is determined eligible, the TAP staff will assist the individual
in determining what equipment is needed and will provide it free of charge.
There are TAP demonstration units in ARS offices across the state to assist
in selecting equipment.
If you
think you may be eligible for this service and are interested in obtaining
adaptive telecommunications equipment, contact the TAP staff at 1-800-981-4463
V/TTD or 501-686-9693.
Heterotopic
Ossification
By
Tom Kiser, M.D., ASCC Medical Director
Hetero....What???
I get that response from a lot of my patients and other doctors. Heterotopic
Ossification (HO) is a long medical term that describes bone forming in
places in the body where it should not be. It is a rare medical condition
except when you have a major neurological injury (such as a spinal cord
injury or head injury), elective total hip replacement or multiple bone
fractures. The reported frequency of occurrence in spinal cord injury
is anywhere from 10% to 52%. Fortunately, it causes a problem only about
10% of the time and progresses to fusion of the joint only in 3-5% of
individuals.
The
exact cause of HO is not known, so I will not bore you with the theory.
What we see clinically, however, is important to you because you need
to recognize the symptoms so you can seek appropriate medical care. HO
usually starts with warmth and swelling around a joint, although I have
seen a lot of cases where the first sign is loss of range of motion at
the affected joint. Hips and shoulders are the most common locations,
but it can be seen around the elbows and knees. It starts with inflammation
and then bone starts forming around the inflammation and slowly progresses
toward the joint. If no action is taken, the joint can become fused. If
the HO involves the hip, that means the person may no longer be able to
sit in a wheelchair, because the hip will be fused (or locked) in a bad
position.
HO usually
develops in the first four to six months after a spinal cord injury, but
has been reported to occur as early as 19 days and as late as several
years after a spinal cord injury. Often the individual has left the rehabilitation
hospital when it first occurs so it is important to recognize what is
going on so you can get the appropriate treatment.
Diagnosis
of HO is difficult. The bone forms very slowly, so an x-ray will not show
the problem in its early stages. A CAT scan or MRI will show the inflammation
and the radiologist often thinks it is an infection or an area of bleeding.
The best way to diagnose the problem is with a triple-phased bone scan.
This is a nuclear medicine study that tells you where new bone is forming.
Treatment
focuses on decreasing the inflammation, maintaining range of motion of
the joint and decreasing the amount of bone formation. Nonsteroidal anti-inflammatory
drugs such as Ibuprofen, Indomethacin or Naproxen are used to decrease
inflammation. Physical therapy is conducted to maintain range of motion,
and a medication called Etidronate helps prevent calcification of the
inflammatory mass. These measures need to be started quickly to prevent
the one thing we do not want—bone fusion and loss of joint range of motion.
The
important thing from your standpoint is to recognize what is happening
and to seek medical care for an appropriate work-up. If we can start treatment
early, we can usually slow down the progression of the HO and decrease
the risk of future problems.
CAPPS
Project Now Available on CD-ROM
Consumer
Action to Prevent Pressure Sores (CAPPS) was a three-year research project
funded by the Centers for Disease Control and Prevention and carried out
by the Arkansas Spinal Cord Commission (ASCC). The project successfully
demonstrated that a group of persons with spinal cord injury who received
an in-home prevention education program had fewer and less severe sores
than a control group who received no in-home visits. Home health nurses
conducted the in-home education program.
The
CAPPS Project CD-ROM contains: the Final Report, the Prevention Educator
Manual and the Participant Manual. Also included is an independent evaluation
of the CAPPS theoretical model used in the project, plus the ASCC Year
2000 Annual Report. The CD also contains a preview of the Take Control
skin module—an interactive educational tool for the prevention of pressure
sores. The CD is compatible with both Windows and Macintosh computers
and is available at no charge to persons with spinal cord injury and health
care professionals working in the field of spinal cord injury treatment
or pressure sore prevention.
Call
Judith Akridge, ASCC Librarian, at 1-501-296-1792
to request a copy free of charge.
Lifeline
Discount Telephone Service
 Do
you need help getting phone service? Southwestern Bell offers discounts
to people who qualify for help with an old unpaid bill, in controlling
monthly charges and with phone hook-up charges. Here’s how:
You can qualify for special help if:
- your household
earns less than $15,150 a year, or
- you receive federal
benefits through Food Stamps, Medicaid (including Supplemental
Security Income) or Aid to Families with Dependent Children.
Help
with an old unpaid bill.
If your phone was disconnected because of an unpaid bill, you can take
12 months to pay what you owe, and get phone service re-installed after
the first payment.
Help
in controlling monthly charges.
You have two choices. If you want to make a limited number of calls, choose
Lifeline Measured service. For about $6 a month, you can make 40 free
local calls. Additional calls are priced by time of day, distance called
and length of call. If you want unlimited local calling and a way to control
long distance charges, choose Lifeline Basic service for as little as
$10 a month. This service includes free blocking of long distance and
collect calls. Long distance calls can still be made using prepaid calling
cards; this gives you built-in control.
Help
with phone hook-up charges.
You pay only $20 for hook-up—half the regular price.
Call
Southwestern Bell Telephone at 1-800-464-7928
to apply for Lifeline Discount Telephone Service.
The
telephone number printed in the physical newsletter for this service has
changed. The correct telephone number appears above. Sorry for any inconvenience.
The editors.
Spina
Bifida Camp 2002
Mark
Your Calendar! Spina Bifida Camp is scheduled for June
23 - 28, 2002! The Arkansas Spinal Cord Commission, MedCamps
of Arkansas, Inc. and Camp Aldersgate, Inc. sponsor the week long camp
for ASCC clients ages 6 to 16 at Camp Aldersgate in West Little Rock.
All Campers benefit from this FREE,
week long experience! The Camp is air-conditioned and fully wheelchair
accessible. Campers are supervised by trained counselors, volunteers and
MedCamps medical specialists. Activities such as hiking, swimming, fishing,
boating, music and crafts are adapted so that each camper can participate
to his or her fullest ability.
Applications go out in March, and acceptance will be first-come, first-served,
so get your application in early to
assure your spot at Camp this summer!
Annie
McKnight Retires!
Annie
McKnight was tickled with her cake at the retirement party given at the
ASCC office in Magnolia on September 28, 2001, her last day as ASCC Case
Manager. We wish Annie well in her “life of leisure.” Janet White has
assumed Annie’s former caseload.
Cabin
Fever: 105°
By John E. Brasch, M.F.T.
What
is the weather like where you are? Is it cold? Snowing? Raining? Sunny?
Do you feel trapped inside and just want to break out? Do you feel like
screaming out loud because you’re going stir-crazy?
When
I say the words “cabin fever,” what images come to mind? Perhaps you see
a woman with screaming kids clinging to her as she looks out the torn
screen door of her Texas farmhouse, her dreams as faded as the paint.
Or maybe a trapper in Alaska sits confined to the decrepit one-room cabin
where he shivers next to a potbelly stove and watches the snow blow in
from the cracks in the wall. Perhaps a calendar hangs on his wall as he
marks off the long days and prays for an early spring.
So,
what is cabin fever? The best answer I could find is that it’s associated
with being confined in a manner from which you feel there
is no escape. (Okay, so that sounds like my entire life!) Do you feel
trapped and unable to get out? Do you sense there are no escape routes
from your situation? Well, my friend, you may be suffering from cabin
fever.
The
most common element here is that cabin fever is associated with being
trapped indoors,
for whatever reason—be it too hot, too cold, too wet, too this or too
that.As a wheelchair
user, I understand what it’s like. I have cabin fever as I write this.
It’s cold here in Oregon, about 30°, and fog is forecast for the day.
Not very hospitable. It will be another day spent mostly inside trying
to keep busy, trying not to think that winter hasn’t even started yet!
Signs
I
know when my cabin fever is beginning. I find myself rolling aimlessly
throughout my home. I open the refrigerator door just to look inside.
Perhaps I’ll find something that wasn’t in there two minutes before.
I also
start feeling apprehensive and jittery. I want to go for a roll down by
the river, but Ican’t. It’s too wet outside. My chair will get stuck in
the mud again. Looks like I’m stuck at home again today.
For
many years, “cabin fever” has described the frustrations of feeling trapped
inside when you can’t get out. As in the example above, it was first applied
in the far north where the nights seem to never end while the cold wind
blows the silent snow at hurricane force. The wind is so bitter it freezes
any exposed skin in a matter of seconds and makes toes and fingers tingle
with freezing flesh.
You’re
trapped inside. You rub the frozen condensation from the inside of the
window but see nothing but the blinding darkness of the empty wasteland
outside. It has been weeks since you were able to go anywhere. The howling
wind relentlessly pounds on the shutters, and all you do is pace the worn-out
path on the floor in front of you.
What
are some of the symptoms of cabin fever? Some people (including me) report
wanting to sleep more that normal, while others say they can’t sleep.
Many (including me) want to eat more; others don’t have the energy to
eat.
Cabin
fever can create hallucinations and deliria much like a high fever does.
It’s a real situation and affects millions of people from all walks of
life. Many individuals have no idea what it’s like to be in a wheelchair,
let alone having to consider the weather elements outdoors. I, for one,
am no fan of encountering ice while using my chair. (Does anyone make
tire chains for wheelchairs?)
Solutions
So, what do you do when you feel “trapped?” How can you ease the sensations
of being “confined?”
You
need to seek what helps you. Below are some ideas with which you can start.
But it will be up to you to decide what works best.
Don’t
become discouraged if something doesn’t work. You may need to try several
things. You may find you like more than you realize. It might take a while
and many tries to decide what you like best. Keep trying.
I am
a para, and my friend is a quad. We talked about what helps us when we
can’t get out. We have many differences as to what gets us through the
days and nights during the long winter months. Talking helps him a lot
more than it does me. Doing things helps me more than him. That’s okay.
There isn’t any right or wrong with what helps you, with a few exceptions
like drinking too much, smoking,
drugs . . .
Well, you get where I’m going with this.
The
most important aspect of dealing with cabin fever is that you
are in control of what goes on in your life. You are doing
this for you as much as I am doing this for me. Such and such activity
helps me. What helps you?
Perhaps
you like to knit or do needlepoint. I tried this once (only once), but
I am too fumble-fingered. Knit one, pearl two looked more like Godzilla
tromped through it. But that’s okay. It isn’t my thing, either. I have
the wounds to prove it!
Do you
like to play card games? Enjoy music or perhaps just like to sing? Do
you write?
My friend
likes to read and paint. He is talented, using his mouth to control the
brush. He is resourceful, and this, I feel, is the key.
I want
to talk about you for a moment.
I don’t know you, but perhaps you have this pressure of feeling homebound,
caught up in the sense you might never get out again.
What
can you do right now to stop
this feeling? Can you talk to someone? How about talking to yourself out
loud? I do it! (Too much, some say; but hey, it works.) Can you call someone?
Or pick up a piece of paper and just draw a few images that describe what
you feel?
Put
down this magazine for a moment, close your eyes, and take a deep cleansing
breath. What will make you feel better and take your mind off the situation?
Look around you. What do you see? Does your environment make you feel
comfortable and cozy? If not, why?
I know
when I start feeling the effects of cabin fever. I don’t really want to
do anything. I usually have
to nudge myself to get started. Otherwise I find myself opening up the
refrigerator again every few minutes to see if something new is in there.
A picture
titled “Dolphin Journey” hangs above my computer. It helps me take a quick
escape from my cabin fever. Just looking at it gives me a sense of peace
inside. When I add up all the times I do this escape, I start to realize
just how much my minivacations mean to me. When my mind starts to pull
me into cabin fever, I break the thought with a minivacation.What will
you do when you need a quick
escape or a minivacation? Perhaps you’ll relive a wonderful experience
or picture an exotic paradise.
Remaining
active helps me. I listen to music and wave my arms around like a raving
lunatic, but this makes me feel good. Isn’t that what it’s all about—feeling
good about ourselves? Not just making it through the day or the next few
hours, but about what we do for us.
I give
you this moment to feel free. It’s up to you to make it work for a lifetime.
Copyright
2001, Paralyzed Veterans of America, by permission of PN/Paraplegia
News.
Time
to Apply for
Education Scholarships!
It’s
that time of year again—time to start applying for scholarships to fund
your higher education.
Each
year the Spina Bifida Association of Arkansas and the Spina Bifida Association
of America offer scholarships for the next school term. Funds are limited
and not everyone that applies will receive a scholarship. Applicants may
apply for both the national scholarship and the local scholarship. Requirements
and applications differ for each scholarship.
Scholarship
applications must be received by the SBA/AR no
later than August 15, 2002. All local scholarship applicants
will be notified by September 1, 2002, if they have been awarded a scholarship
or not. If you have received a scholarship in the past you may still apply
but priority will be given to those who have not previously been awarded
a scholarship.
Applications
for the national scholarship must be postmarked
by April 3, 2002, and submitted to the address on the application.
Winners of the national scholarship will be notified by June 1, 2002.
Both
applications require different documents to accompany the applications,
so start early to ensure you
have all documents turned in on time. For more details and to receive
an application for both scholarships please call the Spina Bifida Association
of Arkansas at 501-978-7222 or the
National Spina Bifida Association at 202-944-3285.
The
Arkansas Governor’s Commission on People with Disabilities scholarships
are being offered again this year. The deadline for applications is March
15, 2002. For applications and questions you may contact Barry
Vuletich at 501-296-1626.
New
Books in the Resource Center
The
McCluer Education and Resource Center on Spinal Cord Injury has added
a number of new items to its collection. If you are interested in checking
out any of the resources please call the Resource Center at 501-296-1792
or 1-800-459-1517.
The
Resourceful Caregiver
(book) was created by family caregivers for family caregivers. It contains
over 500 different resources to help caregivers help themselves and their
loved ones. Caregiver support organizations, national respite organizations,
toll-free numbers for medical transport and many other useful services
are detailed in order to help make your life easier.
Handicapped
in Walt Disney World: A Guide for Everyone
(book) is a guide for handicapped travelers to Walt Disney World. Find
accessible and affordable lodging and restaurants, evaluate the accessibility,
tips on how to plan your trip and how to get the most out of your vacations
are just some of the topics covered in this resource. Experience one of
the most famous resorts in the world with the peace of mind that comes
with knowledge and planning.
Taking
Charge: Teenagers Talk about Life and Physical Disability
(book) is based on information gathered during in-depth interviews with
teenagers. Taking Charge covers three major areas of concern. Part
One focuses on self-esteem. Part Two explores relationships with family,
friends, and the community. Part Three looks toward the future with a
discussion of short and long term goals.
Great
American Vacations for Travelers with Disabilities
(book) is a complete trip planner. It includes essential planning information
including local access organizations, wheelchair repair shops, what to
pack and tips on getting there. Touring is made easy with information
on vehicle lifts.
SPINAL
COURIER
Published
quarterly by Arkansas Spinal Cord Commission
Cheryl
L. Vines, Executive Director
Thomas
L. Farley and Dee Ledbetter, Coeditors
Commission
Members: James Miller, Chair, Jimmy Ashley, Sheila Galbraith Bronfman,
Joe McNiel and Sandra Turner
The
Arkansas Spinal Cord Commission does not discriminate on the basis of
race, color, national origin, sex, religion, age or disability in employment
or the provision of services.
Visit
our website at: www.state.ar.us/ascc
or e-mail us at: courier@arspinalcord.org
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