Spinal Courier April 2006

Governor Mike Huckabee appointed John Wyrick to the Arkansas Spinal Cord Commission in January. He will serve until 2013. Mr. Wyrick replaces Dr. Doug Foster, who left the Commission when he moved out of state last year.

Born in Texas, John has lived most of his life in Arkansas. A farming accident in 1996 caused his spinal cord injury. He is the owner of Esquire Marble, a family owned company where he has worked for the past 35 years.

John and his wife, Donna, live in Mabelvale, AR. He has two sons, three stepdaughters and six grandchildren. When he isn’t working or spending time with his family, John is an avid trap shooter. He participates in trap shoot competitions around the state. He says that he seldom meets another person who uses a wheelchair in the competitions, though no real adaptations are needed to participate. In a recent competition in Ft. Smith he won his division. “I’d really like to see more people who use wheelchairs compete,” John said. “It is a great competitive hobby.”

Mr. Wyrick brings a strong new business perspective to the Commission, as well as interest in many issues, including community accessibility and accessible parking. One of his irritations is the misuse of accessible parking spaces, often by those who are using a vehicle with a placard or plate when the person with a disability is not present. He would like to see the Spinal Cord Commission become more involved in educating the public in the accessibility laws.

The Commission members and staff welcome John Wyrick to our Commission.

Gaylon Branch joined the Arkansas Spinal Cord Commission (ASCC) Little Rock Case Management staff in late January. He replaces Jamie Deere and is responsible for clients living in parts of Pulaski and Saline counties. After completing his orientation in February, Gaylon has begun meeting the individuals on his caseload.

He is a graduate of the University of Arkansas at Pine Bluff where he majored in Rehabilitation Science and completed his internship with Arkansas Rehabilitation Services. He has experience as a Waiver Supervisor, working with people with physical disabilities in Pulaski County, and has knowledge of many community service providers.

His most recent employment was with United Cerebral Palsy in Little Rock. ASCC Client Services Administrator Patti Rogers stated, “We are very pleased that Gaylon has joined our agency and feel fortunate that he brings a solid background in advocating for individuals with disabilities.”

When asked what he does while not at work, Gaylon said, “I love to play basketball, watch basketball and any other type of sports.” His wife would probably classify him as a “gym rat.” Gaylon said, “In addition to sports, I enjoy traveling, watching movies and eating. And I love spending time and playing with my son, Jaylon.”

Gaylon, his wife, Rashenda, and their one-year-old son live in Conway. Both Gaylon and his wife commute daily to Little Rock, as Rashenda is a counselor for pregnant teenagers at the Center for Youth and Families.

Please join the Commission members and ASCC staff in welcoming Gaylon to our agency!

New Resources Available

Dear Editor:

The McCluer Education and Resource Center on Spinal Cord Injury has recently acquired The Paralysis Resource Guide, written by Sam Maddox and produced by the Christopher Reeve Paralysis Foundation through a cooperative agreement with the Centers for Disease Control and Prevention. To check this excellent book out, please call me at 501-296-1792 or 800-459-1517.

Also, I would like to recommend mobilewomen.org which is an online magazine for women in wheelchairs. This web site includes articles, resources and an interactive forum specifically for disabled women that allows you to ask questions and share information with other disabled women, nurses and knowledgeable people.

Allison Martinez
Little Rock, AR

My own experience over the past several years has given me a new appreciation and admiration for family caregivers. The death of Dana Reeve this past month reminded me that family caregivers come in all different shapes, sizes, ages and walks of life.

Over 50 million Americans are family caregivers, with about 260 thousand living in Arkansas. Those Arkansans provide 280 million hours of care each year! Most of it is not reimbursed and the majority also have full-time jobs and other family responsibilities.

The old adage “he ain’t heavy, he’s my brother” (husband, son, mom, dad, sister) describes the role of family caregivers to me. Caregivers do it because they love their family member and want them to live as independently as they can. Does that make it easy? No, it doesn’t, not for the family caregiver or for the person receiving the care. It is a challenge every day to keep the care giving relationship a healthy one, allowing mutual support and respect. Certainly, life with spinal cord injury often includes family care giving.

I am constantly amazed and in awe of many of you and your families. You are my role models! Thanks for all you do.

With Thanks

Donations this quarter from:

Mary South
Marie South

In Memory of Larry Jackson, III
Larry Jackson, IV
Heather Clark
Melinda Murphy
Tommy & Becky Clark

In Honor of Donald Hughes
Ray & Jewell Hughes

In Memory of Harry Vines
Jim Miller
Robert & Peggy Griffin

In Memory of Maria Sullivan
Sherry Woolridge

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 Arkansas Spinal Cord Commission at 501-296-1788 / 1-800-459-1517 (voice) / 501-296-1794 (TDD), or send your donation to:

Since 1991, the Arkansas Spinal Cord Commission (ASCC) has offered educational conferences each year. This year we are making a change! ASCC is teaming with Arkansas Rehabilitation Services, ICAN, Arkansas Disability Coalition, the Disability Rights Center, DHHS Employability project and our independent living centers to offer a new conference.

Arkansas Disability Expo: Independence Days will be held at the Statehouse Convention Center July 5–7, 2006. The conference will have a huge Disability Expo with national and local assistive technology, durable medical equipment and service providers. In addition, there will be six tracks of sessions, including wellness, employment, advocacy, education and assistive technology.

It will be an opportunity to learn and share experiences with a wide variety of people. The conference will also include continuing education units, door prizes, and a social event at the Clinton Center. Some scholarships and travel stipends will be available.

Andy Imparato, President and CEO of the American Association of People with Physical Disabilities in Washington, DC, will kick off the opening session on Wednesday. Chad Colley, a paralympic athlete from Barling, AR and Vietnam veteran, will offer the keynote address to close the conference on Friday.

You will be receiving a brochure on the conference in May, but mark your calendar now and plan to attend Independence Days in July!

On Friday, May 5, 2006, the 7th Annual Therapeutic Arts Festival, Bringing Out The Best In Me! will take place at Clear Channel Metro Center in Little Rock. This festival benefits individuals with disabilities and features “hands on” make-it-and-take-it crafts, music, activities, a climbing wall, as well as free caricature drawing for over 500 participants.

The concept of this festival is to provide the opportunity for children and adults with disabilities to become exposed to new experiences in the arts. The Therapeutic Recreation Arts Festival is a celebration of imagination and innovative activities inspired through the community’s resourcefulness. Admission is free.

The City of Little Rock Therapeutic Recreation Program sponsors the Festival in conjunction with many other agencies serving people with disabilities, including ASCC.

If you have questions or need more information, contact Cindy Covey or Sherrie Shinn at 501-244-5489.

In 1976 Marilyn Cox was crowned the first Ms. Wheelchair Arkansas and traveled to Columbus, Ohio for the Ms. Wheelchair America pageant. Thirty years later, Ms. Wheelchair America is coming to Arkansas. The 2006 pageant will be held July 31st to August 5th, at the Peabody Hotel in Little Rock. Ms. Wheelchair America 2007 will be crowned at a gala event on August 5th.

Throughout the week, contestants representing at least 30 states will participate in activities and programs, including a Wild World of Sports Night at First Tee, a quilting program at the Historic Arkansas Museum, as well as classes in ADA, advocacy, self-promotion and sexuality. These are interspersed between interviews and talent competitions.

Angel Okafor of North Little Rock, Ms. Wheelchair Arkansas 2006, will represent our state in the pageant.

In its 25th year, the Ms. Wheelchair America program was established by rehabilitation physician Dr. Phillip Wood as a forum to promote the achievements and needs of people with mobility impairments. Unlike other pageants, Ms. Wheelchair America is not a beauty contest. It is instead a competition to select the most accomplished and articulate spokesperson for the millions of Americans with disabilities. The selected representative must be able to communicate both the needs and the accomplishments of her constituency to the general public, the business community and the legislature.

As Ms. Wheelchair America, her duties are numerous. Each year she has the opportunity to travel, visiting advocacy groups, making public appearances and conducting radio, print and TV interviews in the fulfillment of her responsibilities. These include promoting awareness of the need to eliminate architectural and attitudinal barriers, informing the able-bodied public of the achievements of people with disabilities across the nation and promoting Ms. Wheelchair America by assisting in the establishment of programs in all the states.

For additional information about the 2006 pageant, contact Ida Esh’t at 501-296-1600 or go to the Ms. Wheelchair America web site at www.mswheelchairamerica.org

Diagnosis and Treatment
Diagnosing OSA begins with recognition that there is a problem. Some people may recognize common symptoms of OSA while awake. However, most people are not aware of their breathing patterns while sleeping. Sleep partners or close family members may be able to provide feedback on nightly symptoms of OSA.

The second step is to consult a doctor. Patients who are suspected to have OSA are usually referred to a sleep clinic for evaluation. A sleep test (polysomnography) can then be used to record body activities such as electrical activity of the brain, eye and muscle movements, heart rate, respiratory effort, air flow and blood oxygen levels during sleep. OSA is diagnosed if the person has more than five apneic episodes per hour.

Treatment is aimed at restoring regular nighttime breathing and relieving symptoms. Some mild cases of OSA might be treated with behavioral changes such as weight loss, changes in sleep positions, or reduced use of alcohol, smoking, and sleep medications. Treatment of moderate or severe OSA usually includes a Continuous Positive Airway Pressure (CPAP) mask that fits over a person’s mouth and nose during sleep. The air pressure forces air through the mask to keep the airway open during sleep. Surgery is another possible treatment option that might include removing tonsils, adenoids, and excess tissue at the back of the throat. Reconstruction surgery of the nose and jaw may also improve air flow.

Sleep Apnea after SCI
Although research is limited, sleep apnea seems to be a significant respiratory complication for many individuals with spinal cord injury (SCI). Some estimates put the prevalence of sleep apnea in individuals with SCI at ten times higher than in the general population.

It seems that persons with SCI are also at greatest risk for OSA. A number of factors contribute to this belief. First, the majority of individuals with SCI are men, and many are obese with thick necks. These are known risk factors for OSA in the general population. Second, many individuals with SCI sleep primarily on their backs. This is another known risk factor for OSA in the general population. Third, it is common for individuals with SCI to take medications to manage secondary conditions. Some medications are used for calming muscle activity, which is also a known factor in slowing down respiratory function. Finally, most individuals with SCI now have a life expectancy near that of the general population, so they, too, will experience a natural decline in muscle strength and lung capacity as they age. This advancing weakness of respiratory muscles is yet another known risk factor for OSA.

Normal respiratory function is controlled by four muscle groups. The neck muscles normally work to expand your upper chest when inhaling. The intercostal muscles are located between the ribs and help to expand your ribs as you inhale. The abdominal muscles help people breath deeply and cough. The diaphragm is normally the main muscle that people use when they inhale.This is a strong, dome-shaped muscle that separates the abdominal and chest cavities.

Respiratory problems occur when signals sent from the brain can no longer flow through the spinal cord to control the four respiratory muscle groups to breath air into your body. Complete injuries in the thoracic or cervical regions usually result in the permanent loss of respiratory muscle function below the level of injury. The higher the level of injury, the greater the loss to the respiratory muscle control. Therefore, individuals with tetraplegia may be at a very high risk for OSA.

Although some individuals with tetraplegia rely on their neck muscles to help with breathing, they rely mostly on their diaphragm for breathing. However, the diaphragm is not at normal strength. This weakness is compounded by the fact that these muscles become inactive during deep sleep, which further hinders an individual’s ability to breathe.

Diagnosis and Treatment after SCI
Individuals with SCI who think they may have sleep apnea should ask their doctor for a referral to a sleep specialist. Breathing obstructions can result from other medical conditions or as a side-effect of medications, so a sleep test (polysomnography) is needed to diagnose sleep apnea. The main problem for individuals with SCI, especially those with tetraplegia, is that most sleep labs are not fully accessible. This fact is a major barrier to treatment because home-based diagnostic tests may not be covered by insurances. Individuals with SCI and their doctors need to work together to explore other options.

The goal of treatment for individuals with SCI is the same as with the general population, which is to restore regular nighttime breathing and relieve symptoms. OSA is often easily treated in the general population with a combination of methods, which might include weight loss, changes in sleeping positions, or the use of CPAP. However, treatment may not be as easy for individuals with SCI. Although weight loss is possible for most individuals with SCI, changes in sleep positions may not be possible. Although CPAP may be an effective treatment for individuals with SCI, they may have limited mobility and not be able to adjust the mask during sleep. Finally, it takes time to recovery from surgery, and it may or may not be an effective treatment for restoring breathing and relieving symptoms. Again, individuals with SCI need to work with their doctors to find the best treatment option.

Kim Brown joined the ASCC Case Management staff in February 2003, working in the Hot Springs office. In addition to providing services to clients in Garland, Montgomery and parts of Saline County, she is also responsible for ASCC clients who are at Hot Springs Rehabilitation Center (HSRC). Kim coordinates services with the HSRC staff and ASCC field case managers to ensure that clients’ needs are met while they are at HSRC and during the transition back home.

Kim holds two Master’s degrees including one in Social Work from the University of Texas. She is also a Licensed Certified Social Worker, Certified Case Manager and recently obtained her certification as a Rehabilitation Counselor. ASCC is fortunate to have Kim’s extensive experience in working with individuals with spinal cord disabilities and her familiarity with local resources. According to Client Services Administrator Patti Rogers, “Kim does an excellent job assessing clients’ needs and her problem solving skills are invaluable. She has been a tremendous asset.”

Kim and her husband, Gordon, live in Hot Springs Village. Both are avid golfers and spend as much time on the golf course as possible. At home Kim loves to cook, read and watch old movies.

PROFILE:

Date And Place Of Birth: October 29, 1954, in Ferriday, LA

Family Members: Husband, Gordon

I Absolutely Will Not Eat: Chitterlings

If I Did Not Live In Hot Springs, I Would Want To Be: Anywhere between Carmel, CA and Bellingham, WA on the West Coast

One Thing People Would Find Surprising About Me Is: I sing with the Hot Springs Village Chorale

My Favorite Movie Is: To Kill a Mockingbird

My Favorite Song Is: There really is too much fabulous music that has been written over the centuries to choose one, because there is no type of music I don’t like. But Pachelbel’s Canon in D is a favorite and anything by Glenn Miller. And nothing can beat the feeling of singing Handel’s Messiah or John Rutter’s Requiem.

I Am Most Comfortable With People Who: Have a good sense of humor

My Favorite Pastimes Are: Cooking, playing golf, singing, reading and watching movies

The Best Advice I Ever Received Was: “Just do your best.” My mother always told me that as long as I looked at myself in the mirror at the end of the day and could honestly say I had done my best, it was a good day.

My Favorite Saying Is: “I am dancing as fast as I can . . . .”

I Knew I Was Grown Up When: My mother let me decide if I wanted a curfew when I went to college

The One Thing I Always Wanted To Do But Have Never Had The Chance Was: Go scuba diving off the Great Barrier Reef

One Word To Sum Me Up: Dedicated

Don’t Wait — It’s Time
to Sign Up for Camp!

Camp activities include an adventure/challenge ropes course, swimming, fishing, arts and crafts, horseback riding, canoeing, archery, talent show, pool party, tribe games, “Sundaes on Monday” and the Thursday night dance. Campers also have the opportunity to join clubs, such as SCUBA, Boatin’ & Fishin’, AC Xtreme Sports Club, Art Club and Music Club.

All cabins, dining hall, health care center and activity buildings are air-conditioned and fully accessible. In addition, from the time camp starts on Sunday afternoon until camp ends on Friday morning, trained counselors, volunteers and Med Camps medical specialists supervise the campers.

This is a time of growth and learning for the campers while they spend a week full of fun activities. Applications and brochures were sent out in March.

We only have room for 45 campers, and acceptance is based on a first-come, first-served basis—so be sure to send your application in as soon as possible!

If you have questions regarding camp, or if you did not receive your application, you can contact Mary Jo Stanton at 501-296-1788 or 800-459-1517, or by email at mjstanton@arspinalcord.org

Please visit our website at www. spinalcord.ar.gov for more information.

See you at Camp!

News from SBAAR

The Corvette Club of Central Arkansas will hold their annual spring Corvette Car Show benefiting the Spina Bifida Association of Arkansas (SBAAR) on April 21-23, 2006. According to SBAAR spokesperson Vicki Rucker, “The Corvette Car Show is the primary source of support for the association’s yearly events, such as the Christmas party and Fall Festival.”

“The Corvette Car Show will once again be held at the Old Train Station in Hot Springs. Owners of Corvettes from all over the Midwest and South are expected to attend the show,” stated Vicki. Volunteers will be needed to make this event a success. Please call Vicki at 501-978-7222 for more information and to volunteer.

In addition, Vicki announced that the national spina bifida conference will be held in Atlanta, GA on June 25-28, 2006. You can register online at www.sbaa.org to attend this event.

Congratulations
Susie and Cindy!

For the past three years Little Rock ASCC Case Manager Susie Kirkwold and Administrative Assistant Cindy Krebs have been the agency’s campaign coordinators for the United Way. This was their final year and, boy, did they go out with a bang!

“We set a goal in 2003 of 100% employee participation and this was our year! Susie and I cannot say enough about the generosity of our coworkers. Since 2003, we have increased total pledges from $1300 to $2176 annually and participation has jumped from 47% to 100%,” announced Cindy. Way to go, Susie and Cindy!

We invite you to send in your helpful hint—your bit of “grease.” Contact your ASCC Case Manager, write us at Spinal Courier, Arkansas Spinal Cord Commission, 1501 N. University, Suite 400, Little Rock, AR 72207 or e-mail us at courier@arspinalcord.org

Commission Members: Joe McNiel, Chair, Jimmy Ashley, James Miller, Sandra Turner and John Wyrick

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.spinalcord.ar.gov or e-mail us at: courier@arspinalcord.org