CODI: Cornucopia of Disability Information

PUSHIN' ON

PUSHIN' ON           Summer, 1995            Volumn 13, Number 2

This newsletter, Pushin' On, is a publication of the Medical
Rehabilitation Research and Training Center and is published twice
a year for consumers with SCI, their families and rehabilitation
service providers.  The RRTC at the University of Alabama at
Birmingham is housed at UAB-Spain Rehabilitation Center, Department
of Rehabilitation Medicine.   Phone: 205-934-3283 (voice), 
205-934-4642 (TDD)  Internet: Lindsey@sun.rehabm.uab.edu

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Staying Active:  New Adventures or Old Hobbies

Sheila Sherer discovered something about herself after a fall that
left her with a spinal cord injury 3 years ago.  She realized that
she was boring!  "I had spent my whole life working.  After I got
home from rehab and was still in my body jacket, I decided that I
had a boring life.  I decided that when I was able, I was going to
try some activities that I had always wanted to do.  There were two
things I had always wanted to try - learn to swim so I could scuba
dive, and learn to horseback ride."

"The first year after my injury I was busy just building myself up
physically.  After I finished my out-patient therapy, I contacted
the recreational therapist and learned about "Special Equestrians". 
The director of the program in Birmingham, Kathleen Claybrook,
reassured me that though I had never been on a horse before, I
would not fall off!"

"Actually there is always a danger of falling off a horse,
especially as you gain more independence.  However the instructors
only give your the amount of independence you ask for, when they
feel you are ready."

"A difficulty for many individuals after their spinal cord injury
is balance," says Sheila.  "The horse-back riding has helped so
much with my balance.  It has also help strengthen my inner leg
muscles, what little I have left."

Sheila takes one lesson a week for an hour.  There are 30 minutes
of instruction and then 30 minutes of trail riding.  "When I began,
a person led the horse and one walked on either side of the horse
to make sure I did not fall off.  The instructor covers all the
basics of riding, such as how to sit, how to adjust yourself, how
to balance, how to walk, trot and even how to canter and jump. 
They primarily teach the English style of riding, but are willing
to adapt to the rider's needs."

The "Special Equestrians" program in Birmingham is five years old. 
Since this program began, it has grown from 6 students to 80
students.  "Most of the students are children. I think that is
mainly because many adults do not know about the program or never
thought about the benefits of horseback riding," Sheila explains.

"This is a way to build your confidence.  When I am on the horse,
I am like everybody else.. in fact, I am better than everyone else! 
It gives me a freedom that I do not have when I am in the chair. 
As I progressed the leader and the side walkers were no longer
needed.  An instructor does remain in the ring during the lesson to
give me instructions on riding technique and style."

"I am now self-sufficient.  I no longer have any fear. I can get on
and off the horse from the ramp by myself.  This activity is for
all ages.  I am not 24 - I am not 35 - I am 40 something!"

At present there are few individuals with SCI in the program. 
Special Equestrians is open to people with different disabilities,
including individuals who have had a stroke and amputees.  A
session that includes ten hours of lessons and riding costs $50. 
Scholarships are available.

For information on horseback riding programs contact:
Special Equestrians, Inc., 900 Woodward Dr, Indian Springs, AL 
(205) 987-9462 or
North American Riding for Handicapped Assoc. PO Box 33150, 
Denver, CO  80233  (800) 369-7433.
                        * * * * *
John Ramsey continues to hunt, even after an accident that left him
paralyzed at the T5 level.  This may surprise some people when they
learn that John received his injury when he fell from his tree
stand while deer hunting.  Usually one to wear his safety line, he
had forgotten it on that day. Yet nine months later, he was back in
the woods hunting.

Why?  "For the love of the sport and the determination that it (the
injury) wasn't going to beat me," says John.  "Getting into the
woods, where the deer are, can be a challenge.  I flipped my chair
over more than a few times, doing what I call my "wheelchair
aerobics". So I started the never ending process of making
adaptions to my Quickie GPV chair.  Widening the tires, changing to
mountain bike treads and lengthening the wheelbase have helped."

John recently purchased a used golf cart and is making some
adaptions.  The cart will allow him access to the woods without
taking an assistant.  "Hand controls, a winch to get out of sticky
situations, a lift to retrieve the game, and a coat of camouflage
paint will make it worthy to hunt in.", he says.

The state of Alabama allows people with physical disabilities to
hunt with crossbows.  John finds this is a noisier and not as
accurate way to hunt.  "I'm having my old compound bow worked on to
reduce the poundage so it won"t pull me our of my chair."

For a person with a disability such as quadriplegia, crossbows are
out of the question because of the power needed to pull the
trigger.  A choice for a hunter with limited arm and hand use is a
rifle with adaptive equipment.  The SR-77 rifle shooting rest, can
be used.  A mouthpiece, as well as a sip and puff mechanism, allows
the individual with limited arm use to aim and fire the rifle.   

John enjoys hunting on two pieces of public land in Alabama that
are set aside for people with disabilities.  The Army Corps of
Engineers in Green County sponsors one area and the second is in 
Chickasaw State Park.  Both have handicapped accessible shooting
houses.

Several hunting resources and organizations provide information and
sponsor hunts and fishing tournaments for individuals with
disabilities.  For more information contact-

Alabama Handicapped Sportsmen, 44 Huntington Place,
Northport, Al  35476     (205)-339-2800

Disabled Outdoors Magazine, 2052 W 23rd St,  Chicago, IL  60608
708-358-4160  or  312-927-6834
Subscription:  $10/yr

Georgia Handicapped Sportsmen, Inc
5865-C Oakbrook Pkwy,  Norcross, GA  30093
404-246-9810

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New Technology to Increase Your Productivity and Independence

     It is not easy for an individual with spinal cord injury, who
has limited use of an arm or hand, to operate a computer using a
keyboard or mouse.  This limits their use of many computer software
programs that run word processing, spreadsheet, and database
programs.
        A new technology, called Voice-Recognition Systems, has
changed that.  Now by speaking into a microphone on a headset, the
computer works as if someone entered the information using a
keyboard or a mouse button.
     Voice recognition systems have been available for sometime but
were expensive and not very accurate.  Now they are affordable and
accurate.  With proper training, voice recognition software can run
any windows based application.  The voice command also operates all
of the functions in the window button menu, such as FILE, PRINT. 
The voice command runs anything that can be done with the mouse.  
      Voice recognition software comes with its own pre-installed
vocabulary list (20,000-60,000 words).  You can then enter your own
personal vocabulary list (10,000-20,000 words) of words you use
regularly in your work.
     The first step is to train the computer to recognize the
operator s (your) voice.  You read a pre-set list of 400 words. 
The computer makes a print of your voice for each word.  This
allows it to understand your voice and accent.  Everyday it re-
saves your voice profile with any changes you made, using
"artificial-intelligence".
     A feature on most Voice Recognition systems is a "TAKE
WINDOW".  For each word you say, a small  take window  shows 4-10
other words that are a close match to the word the computer thinks
you said.  If the computer uses the wrong word, you look at the
"TAKE WINDOW" on the screen.  If the word is there, you simply say
"Take 3" (if it is the 3rd word listed).  If your word is not in
the list of choices in the "take window", you give a command, like
"CORRECT THAT" or "OOPS", and then spell the word you want entered. 
The computer "teaches itself" and adds the correct word to its
memory for your voice match.
     You must  pause slightly between each word as you talk.  The
computer needs to know when one word stops and the next word
begins.  You.....need .....to.....talk.....at .....a ....slower
.... pace.  Each system becomes more efficient and accurate with
training.  Kirk Tcherneshoff says that after a couple months using
the Kerzweil Voice for Windows system, he can now speak at about 45
words per minute.  "It does take some time to learn the commands,
but you make the system work for you."
     "It can be mentally challenging!  It takes time to get used to
keeping creative thoughts going and add  a pause between words.  I
find it is easier when I do business writing," says Kirk.
     Another useful feature Kirk enjoys is being able to build
macros in the system.  An example would be a name and address
frequently used in writing letters.  You would speak the entire
name and address and save it as a macro file named "Sam's Address". 
In the future when you say "Sam's Address" it types the entire name
and address.
     "The best part is with a voice recognition system I can write
all day and not get tired. Because I have limited strength and use
of one arm and hand, I can type about 15-20 wpm.  But after an hour
I need to rest.  I don't get tired of talking.  I can now work more
efficiently and faster than before."  Kirk sees this as a
reasonable accommodation that employers can make.  It allows
someone to do their job and increase their productivity. 
     Pat O'Brien, Assistive Technology Specialist with the Alabama
Vocational Rehabilitation Service, emphasized the need for
assessment and training.  "The first step is for the person to be
evaluated to see if a voice recognition system is the right tool
for them.  To be successful with this technology a individual needs
the following:  an ability to understand how the computer and
software work, good spelling skills, strong cognitive abilities,
and the ability to handle several tasks at one time."
     Pat explained, "The individual must be willing to spend time
to train on the system to learn all the commands." Pat encourages
rehabilitation counselors and employers to first rate the person s
abilities.  He advises potential users to first try the system
before they buy.  See how it works and what they will need to learn
to make it work for them.
     For further information on two voice recognition programs you
can contact:
Kerzweil Voice for Windows-----------------------------------
Kerzweil Applied Intelligence, Inc.
411 Waverley Oaks Road,  Waltham  MA  02134
(800) 580-1254

Adaptive Solutions, Inc
PO Box 19108,  Mobile AL  36619-1087
(334) 666-3045

Dragon Dictate----------------------------------------------------
Dragan Dictate
(800) 825-5897

Access Technology
PO Box 2102,  Decatur  AL 35601
(800) 842-1308

For more information on assistive technology contact your state
TechAct Project. In Alabama contact: STAR - Statewide Technology
Access and Response PO Box 20752, Montgomery,  AL  36120-0725
1-800-STAR656

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Questions from the Clinic:  "Caution!  Allergic to Latex?"
          by Mike Lambert, RN

     There have been cases recently where individuals with SCI have
had severe allergic reactions to items made of latex.  Most have
occurred during surgery.  This is because more internal tissue is
directly in contact with the latex.  None had previous allergic
reactions. 1
     Individuals with SCI need to be aware of the possibility of
having an allergic reaction to latex. The greater exposure one has
to latex, the greater the risk for developing a latex allergy. 
Latex is used in making many medical products.  This places people
with SCI at greater risk.  Many of the supplies they use every day
are made of latex. One example is the products used in daily bowel
and bladder programs.  After constant exposure to rubber (latex)
products, people often develop a sensitivity to it

Q.  How do I know if I might be allergic to latex?

A.  Signs that may indicate an allergic reaction can range from
mild to severe.  Common symptoms are watery, itchy eyes; coughing
and sneezing; an itchy, red, raised rash; swelling of the windpipe;
or occasionally life-threatening changes in blood pressure and
circulation (anaphylactic shock).  
     Watch for any of the signs mentioned above.  If you have any
of these signs and are unsure of their cause, check with your
doctor. 
     People who have certain food allergies are more likely to
react to latex.  This is called cross-reactivity.  The foods
reported to cross-react to latex are bananas, water chestnuts,
kiwis, raw potatoes, tomatoes, celery, carrots, hazelnuts, figs and
avocados.  Having a known allergy to any of these foods may
indicate a possible allergy to latex.
     Some people may be symptom free.  Before having any surgery,
ask your doctor to complete a careful allergy history.  The doctor
may recommend allergy testing, give you antihistamines before
surgery, or not use latex products during surgery. 

Q.  What should I do if I am allergic to latex?

A.  First, stop using products made from latex.  Check the list for
other brands that do not contain latex.
     Wear a medic-alert bracelet or necklace.  Carry an auto-
injectable epinephrine and sterile non-latex gloves for emergency
use.
     Alert all of your health care providers to the danger of
latex.  Tell them which latex-free products that you use.  Remember
that dentist also use latex products.
     Ask that your medical and dental records be clearly and boldly
marked LATEX ALLERGY.
     Consult with your physician or an allergist who is familiar
with this problem.  If you should need surgery in the future,
special steps would need to be taken by the hospital and surgery
staff.  (Childrens' hospitals often have latex free surgery units
because of the high risk that children with spina bifida have to
latex).
     Latex sensitivity can be a serious problem.  If you have any
concerns, discuss them with your doctor.

1  Shenot P, Rivas D, Kalman ., Staas W, & Chancellor  M. Latex
allergy manifested in urological surgery and care of adult spinal
cord injured patients. Arch Physical Med Rehabil 1995; 75:1263-65.


          Substitute Products for Latex

If You Use. . . .                  Instead Use. . . 
Condom Catheters                   Silicone (Mentor, Coloplast)
Indwelling Catheters               Silicone (Kendall, Argyle, Bard)
Leg Bag Straps                     Velcro, Nylon (Mentor, Dale)
Gloves, sterile                    Vinyl, neoprene, polymer gloves
Rubber bed pads (washable)         Disposable underpads
Diapers, incontinence products     Tranquility, First Quality,    
                               Huggies Gold Seal
Tapes:adhesive, porous, elastic    Plastic, silk tape
Elastic on clothing at legs/waist  Cover elastic with cloth
Wheelchair cushions, tires         Jay, ROHO cushions, Cover seat 
                                  with fabric use leather gloves
Zippered plastic storage bags      Waxed paper, plain plastic bags


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Research Update:  "Outcomes of Post-Spinal Cord Injury Marriages" 
              by Michael DeVivo, DrPH

This column provides readers with an update on current research
that is being conducted at UAB-Spain Rehabilitation Center, UAB-
Dept of Rehab Medicine, Birmingham  AL  35233-7330.  
(205) 934-5359.

This study compares the divorce rate among persons who get married
after spinal cord injury with persons of comparable age and gender
from the general population.  Results also identify those factors
associated with the increased likelihood of divorce.

Previous studies on SCI and its short-term impact on  marital 
status showed the following results:
The number of single (never married) and divorced persons with SCI,
several years after their injury, is higher than individuals of
comparable age and gender in the general population.

The divorce rate is a higher than normal during the first several
years after SCI among individuals who are married at the time of
their injury.1  Fewer single individuals marry after their injury.2

Research had not yet looked at the divorce rate among individuals
who marry after their injury.  Many individuals who receive a
spinal cord injury are single at the time of their discharge from
rehabilitation (54.2%).  It was assumed the divorce rate would be
lower in marriages that occur after an individual is injured than
in marriages that already existed at the time of injury.  To test
this assumption, this study on the outcomes of post-SCI marriages
was conducted.

Method 
622 individuals who married after their injury were identified
using information collected by the National Spinal Cord Injury
Statistical Center (NSCISC) since 1973. These individuals were
followed for 1 to 15 years after their marriage.  The status of
each marriage was determined during their most recent follow-up
annual visit.

Other variables from the data set used to help predict the outcome
of the marriages were: age at the time of marriage, gender, race,
neurological level of injury, Frankel grade, educational level at
the time of injury, marriage order (first or remarriage), and
length of time from injury to marriage.

Findings
During the follow-up period, 126 persons (20.3%) got divorced, 36
(5.8%) were legally separated, and 12 (1.9%) were widowed.  Based
on the U.S. population s divorce rate for persons of the same age
and gender, only 74 divorces were predicted.  Nonetheless, despite
the increased divorce rate, most postinjury marriages remained
intact (74.3% after 5 years and 58.6% after 10 years) Other
significant findings of this study are
*  Men had divorce rates 2.07 times higher than women.
*  Remarried persons had divorce rates 1.8 times higher than
persons married for the first time.
*  Divorce rates were higher among persons without a college
education.
*  Divorce rates were lower for persons with lumbosacral (L or S
level) injuries than for persons with higher levels of injury (T or
C level).

Surprisingly, it appears that the impact of SCI on postinjury
marriages is only slightly less than it is on preexisting
marriages.  This study does provide descriptive rather than causal
information.  Further research needs to identify additional
predictors of divorce and reasons for the high divorce rates after
SCI.  A model could be developed to predict persons at high risk
for divorce.  Steps could be taken to reduce the divorce rate among
individuals with SCI.

The complete review of the study is found in:DeVivo MJ, Hawkins LN,
Richards JS, Go BK. Outcomes of post-spinal cord injury Marriages,
Arch Phys Med Rehabil 1995;76:130-8.
[published erratum appears in Arch Phys Med Rehabil 1995;76:397]

1. DeVivo MJ, Richards JS, Stover SL, Go BK. Spinal cord injury:
rehabilitation adds life to years. West J Med 1991;154:602-6. 2.
Brown JS, Giesy B. Marital status of persons with spinal cord
injury.  Soc Sci Med 1986;23:313-22.

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News & Notes:  Upcoming events, items of interest, and new
materials available.

New Book on SCI Available:
     The new book, Spinal Cord Injury:  Clinical Outcomes from the
Model Systems, edited by Samuel L Stover, MD; Joel A DeLisa, MD;
and Gale Whiteneck, PhD is now available.  This is an update to the
Spinal Cord Injury Facts and Figure book c1986.  The book reviews
two decades of research and data collection on service delivery and
outcomes for persons with SCI within the Model SCI Systems Program. 
Chapter topics include:  National SCI Database; Epidemiology of
SCI; Pulmonary, Cardiovascular & Metabolic Conditions; Pressure
Ulcers; Gastrointestinal, Genitourinary & Sexual Function;
Functional Outcomes of SCI; Long-term Survival &  Causes of Death;
and Implications for the Future.  To order contact Aspen
Publishers, PO Box 990, Frederick, MD 21701-8356, (800) 638-8437,
Cost $70.

1996 Technology Conference in Birmingham
     The Statewide Technology Access and Response (STAR) program in
Alabama is busy making plans for its 2nd Annual Technology
Conference at the Sheraton Civic Center in Birmingham, AL, on Feb
7-9, 1996.  The conference will include training conferences and
exhibits.  For information contact the STAR office, (800) 782-7656.

New SCI Support Group Forms
     The Rocket Wheelers, a new spinal cord injury support group,
has formed in Huntsville, AL and hopes to draw members from the
North Alabama area.  The group is just organizing and plans to hold
monthly meetings where issues of interest can be shared and
discussed.  Speakers and activities are planned.  The group meets
on the last Thursday of each month.  If you are interested in
joining or learning more about the group contact Steve Trent, 15446
Shelby St, Harvest, AL  35749 (205) 232-8876.

Community Support Network serves Individuals with SCI in Alabama  
   A network of Community Coordinators and Family Service Centers
have been set up in Alabama to provide services to individuals with
SCI.  Services include case management, financial assistance,
family education, and providing information on SCI.  This community
support network is funded through the Impaired Drivers Trust Fund. 
The state legislature designated $100 from each DUI fine go to this
fund. For further information, consumers may call (800) 433-8002.


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Federal and State Programs - How Can They Help?

Do you have a question or a problem about a need you have as a
result of your spinal cord injury?

Do you know where to go for help?  There are various agencies in
your community and state that are there to assist you with your
needs.   

     Protection and Advocacy Systems

The federal government supports Protection and Advocacy (P&A)
Systems in each state and territory.  The P & A systems work to
protect the rights of individuals with disabilities by acting as
legal advocates.  They can help with discrimination problems
related to one s disability in areas of housing, employment, higher
education, transportation, and public services.

Several programs sponsored by the P & A system are:

CAP - Client Assistance Program
     Individuals eligible for CAP are those seeking or receiving
services from a Rehab Act program, project, or community program.
CAP can help by: determining if you are eligible for services,
explaining the services, explaining why services are denied.

In most states CAP is managed by the Department of Rehabilitation
Services or Vocational Rehabilitation.

PAIR - Protection and Advocacy for Individual Rights
     PAIR was established by Congress in 1993 to protect and
advocate for the legal and human rights of any adult with a severe
disability.  Some information and referral services provided by 
different P & A programs include: information on your rights to be
free from discrimination, advocacy to help you protect your rights,
mediation to help your resolve conflicts, training and workshops on
disability rights, referrals to legal services.

PAAT - Protection  & Advocacy for Assistive Technology
     PAAT was established by Congress in 1994 with the Technology-
Related Assistance for Individuals with Disabilities Act (TechAct). 
PAAT acts as an advocate by serving as an advocate for the right to
assistive technology in the workplace.
advising clients of their rights to assistive technology.

To locate a P & A program in your state, contact:
Advocacy Training and Technical Assistance Center
c/o National Assoc of Protection and Advocacy System
900 Second St, NE  Suite 211, Washington, DC  20002
(202) 408-9514

In Alabama contact:
ADAP - Alabama Disabilities Advocacy Program
Box 870395,  Tuscaloosa,AL  35487
(800) 826-1675

CAP-Client Assistance Program
2129 E South Boulevard,  Montgomery, AL  36111-0586
(800) 228-3231            

     Independent Living Centers

Independent Living Centers (ILCs) serve individuals with
disabilities and work with them to achieve independence and become
active in their community.  There are over 400 ILCs in the U.S.,
located in most major cities. To locate an ILC near you contact:
NARIC (National Rehabilitation Information Center)  (800) 346-2742

ILRU (Independent Living Research Unit) Houston, TX  (713) 520-0232
In Alabama contact:
Birmingham Independent Living Center  (205) 251-2223

Mobile Independent Living Center
(334) 460-0301

     State Vocational Rehabilitation Services

The number one priority of state vocational rehabilitation (VR)
services is to help individuals with a disability find gainful
employment.  The goal is to ensure that the individual is prepared
and trained to work in the best job for his skills and abilities. 
Services provided vary but may include:  evaluation and assessment,
counseling, skills or job training, purchase of assistive devices,
job placement, and follow-up.

All states offer VR services for individuals who qualify.  The name
of the agency varies in each state, such as the Dept. or Division
of VR or Health Rehabilitation Services, or Vocational
Rehabilitation.    

To locate an office in your area, look in the Blue Pages of your
phone book under State Government or in the White Pages under
Government Agencies.

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This publication is supported in part by a grant  (#H133B30025)
from the National Institute on Disability and Rehabilitation
Research, Department of Education, Washington D.C.  20202. 
Opinions expressed in this document are not necessarily those of
the granting agency.

The University of Alabama at Birmingham provides equal opportunity
in education and employment.  c 1995 Board of Trustees, University
of Alabama
  
Samuel L. Stover, MD, Project Director, SRC
Linda Lindsey, MEd, Editor

RRTC Training Office
Spain Rehabilitation Center
1717 Sixth Ave. South,  Birmingham,  AL  35226            
(205) 934-3283(voice)  (205) 934-4642(TDD) 
Lindsey@sun.rehabm.uab.edu