Spinal Courier October 2004

Torin Lewis (center), surrounded by four of her friends, is ready to enjoy
a memorable adventure floating down the Buffalo River!

There is nothing like floating down an Ozark river in a canoe or inflatable raft in the summertime—drifting with the current and paddling just enough to avoid the occasional sandbar. Thousands of Arkansans make the trip each year to rediscover this unique form of transportation and recreation.
This year Torin Lewis made the trip on the Buffalo River, and from all reports it won’t be her last!

Perhaps the last place you would expect to find a person who uses a wheelchair is on a raft in the middle of the Buffalo River. And maybe Torin was a little surprised herself and thinking, “How did I wind up here?”

It started in June 2003 when Torin attended an ASCC Disability and Wellness Training program designed to motivate and instruct people to increase their physical activities and to eat better. At the end of the program she was asked to set three goals she would strive to achieve over the next year. One of the goals she chose was, “Be more active and involved; take more time for myself.”

That is just what Torin started to do—in small ways at first, but later expanding to a regular exercise routine with friends and doing more things that interested her. So when she was asked to be the maid of honor at a coworker’s wedding, she was delighted and jumped at the opportunity. As maid of honor, Torin hosted a weekend “bachelorette” camping party for the bride and several friends.

She arranged to float the Buffalo River from Bend Ford to the Hwy. 65 bridge on a Saturday in June. Overnight accommodations were at St. Joe, AR in an accessible cabin. Torin offered to drive her van, thus ensuring accessible transportation.

Torin also borrowed a Jay cushion and knobby tires for her manual chair from the ASCC Loan Closet. The tires helped her roll over the gravel bars and traverse the bank of the river. The cushion provided extra protection from the inflatable raft seat for the six-hour trip.

Their float trip was great and overall the camping party was very successful, although there were a few problems along the way. The biggest was that the cabin was not totally accessible. There was a ramp leading to the front door but the bathroom and kitchen were not accessible. Torin, however, “made-do” for the night. The next day she complained to the management and made them promise to widen the bathroom door and install handrails around the commode and tub. The cabin not withstanding, the trip was a great success and enjoyed by everyone!

For Torin, the trip held special significance. It was the culmination of a yearlong goal of being more active physically and taking more time for herself. She passed with flying colors!

Sure, it took motivation to get started and courage to face new situations, but the end result was very satisfying and very much worth the effort. Years from now her photos will bring back memories of a glorious day in June when she and her friends floated the Buffalo River and had the time of their lives!

Thanks to the Help America Vote Act of 2002, polling places are becoming accessible. If you are a U.S. citizen and at least 18 years old, you can vote—but you must register! Under federal law, you can do this by mail. Contact your local election office to learn more about registering by mail, or visit www.eac.gov for a national mail-in form and a list of state deadlines.

Wonder what the candidates have to say about disability issues? Check out www.nod.org, the National Organization on Disability web site.

And, remember, you don’t have to physically go to a polling place to cast your ballot. You can vote in advance by mail, too.

The disability vote will be a force in the 2004 elections. Don’t be left out!

© August 2004, Paralyzed Veterans of America, by permission of PN/Paraplegia News.

Free Piano Lessons for Children with Disabilities

Dear Editor:

Recently one of my clients, Ruth Herndon, contacted me and indicated she would like to provide free piano lessons to children with disabilities. Ms. Herndon lives here in Hot Springs and her home is accessible. If you would like additional information, please contact her at 501-609-9011.

Kim Brown
ASCC Case Manager
Hot Springs, AR

There are few rights I hold as dear as the opportunity to vote. I can still remember casting my first vote at 18—it was the first year that 18-year-olds got to vote and most of us took the responsibility very seriously. I even remember who I voted for that day in 1972. I don’t remember all the votes I’ve made since, but every time I have the opportunity, I take it.

As much as a right, I feel it is a responsibility. I want to support those people who I think will listen to me and represent my thoughts and opinions. Just when some of us had become jaded and decided that our single vote didn’t mean that much came the 2002 elections, when a presidential election was swayed by literally a handful of votes. Your vote does count!

In 2002, I decided to vote early and went to a designated site on a Saturday, instead of to my regular polling place on Election Day. I thought it would be easy and fast, but they couldn’t find my name or my street on the map and I was frustrated. A neighbor and I waited it out and eventually got the right ballot. I thought then even with my trouble, my problems were minor compared to folks who face inaccessible polling places! To be denied an opportunity to cast a vote is a terrible injustice.

If you are registered to vote and wonder about the accessibility of your polling place, call your local County Clerk to find out where it is. If it isn’t accessible, you can work with the County Election Commission to get it changed or you can request an absentee ballot. You must request your application for an absentee ballot for the November 2nd election from your local County Clerk and submit it by mail or fax no later than seven days before the election (i.e., by October 26, 2004) or in person the day before the election. If you have a problem, call the Secretary of State Election Division at 1-800-482-1127.

Voting is our right and our responsibility but no one said it was easy! This is an important election. Make the effort and show your support for the candidates you think will represent your needs and opinions. Your life might depend upon it!

With Thanks

Donations this quarter from:

Julie Allison
Stephanie Bledsoe

In memory of Verlon McKay
T. Van Spence

In memory of Richard Warnock
Reba Warnock

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 / 1-800-459-1517 (voice) / 501-296-1794 (TDD), or send your donation to:

Arkansas State Parks is dedicated to serving park visitors with disabilities and to continuing its statewide efforts to expand accessibility in Arkansas’ 51 state parks and museums, according to State Parks Director Greg Butts. He noted that, as part of the parks system’s commitment to broadening of accessibility, a new fully accessible cabin with its own private, barrier-free fishing pier has been constructed at Lake Catherine State Park.

The cabin’s private, barrier-free fishing pier allows
guests with disabilities access to Lake Catherine.

“This is a first for Arkansas State Parks. Although the parks system’s 113 cabins currently include accessible units for guests with disabilities, this is the first Arkansas state park cabin to offer its own barrier-free fishing pier allowing disabled guests lake access,” stated Butts. He also noted that this is the only cabin with a hydraulic lift to help those with disabilities get in and out of bed.

The new accessible cabin at Lake Catherine State Park offers
a fully equipped kitchen with hardwood floors.

The 1,160-square-foot cabin includes a bathroom with both a whirlpool tub and a roll-in shower. The kitchen is fully equipped with dishes, linens, kitchenware and utensils. The cabin features central heat and air, hardwood floors, ceiling fans and a native stone wood-burning fireplace. Just outside the cabin’s screened porch, overlooking the lake, is a large flagstone patio with picnic table and pedestal grill. Barrier-free paths from the accessible parking space to the cabin and from the cabin’s patio down to the fishing pier are provided.

For more information about the park, contact:

For details, including full color photographs of the park, visit the Arkansas State Parks web site at: www.arkansasstateparks.com/lakecatherine.

This past spring Arkansas Rehabilitation Services (ARS) named Edgardo Pineda “Rehabilitant of the Year.” His ARS counselor, Freddie Smith, attributes it all to attitude, saying, “This guy always has a smile and a kind word for everyone. He could have been bitter about the hand that life had dealt him, but Edgardo wouldn’t allow that.”

Smith arranged for Edgardo to work for Wal-Mart in Hope as a greeter. Edgardo developed his own method of pushing buggies and checking customer packages from his wheelchair. Others noted his good attitude at work and, in a letter, a coworker described Edgardo’s reliability, compassion, friendly spirit and his “always having a pleasant smile.”

According to Smith, “It was his willingness to learn and his ability to adapt to his environment that helped him succeed, and will make a success in anything he tries to do.” Those who know Edgardo feel certain he can achieve anything he sets his mind to.

Congratulations, Edgardo!

The United Spinal Association, a national veteran service and disability rights group, has published a new pamphlet titled Taking Action, a step-by-step guide to becoming a self-advocate to encourage change for individuals with disabilities in a community.

The process of self-advocacy involves research, outreach, follow up, and most importantly, dedication. Taking Action is focused on helping its user solve instances of discrimination under the Americans with Disabilities Act (ADA) and the Fair Housing Amendment Act. Everyone has the ability to be an effective advocate, and using one’s voice to relay personal experiences is the most effective advocacy tool.

Included in Taking Action are five suggested steps of self-advocacy, do’s and don’ts, a listing of helpful web sites and much more. The pamphlet points out that to become involved in issues of importance, the first step is to become informed on the subject matter.

Single free copies of Taking Action can be ordered or downloaded at www.unitedspinal.org, or obtained by calling the United Spinal Association’s publication request line at 1-800-444-0120. A Spanish language version of this pamphlet, Tomar Acción, is also available.

Common Medications Used in SCI Medicine
Part Four - Bowel

By Tom Kiser, M.D., ASCC Medical Director

In this fourth and last article on medication, I want to discuss medications that can be used to improve bowel function in spinal cord injury (SCI). After SCI the function of the gut to absorb nutrition remains unchanged, and the gut’s nervous system is functionally intact. However, the movement of food byproducts and the resulting fecal matter along the gut is slowed down, and voluntary control of the anal sphincter is lost or impaired. The maintenance of a controlled bowel movement under socially acceptable conditions becomes a challenge.

The goal of taking medication for your bowels is to maintain a healthy gut, and empty the bowels in a routine, controlled and continent manner. Through proper diet and fluid management, it is possible to maintain good stool movement and adequate stool bulk to achieve these goals, but one or more of the following medications may be needed if problems develop.

Stool Softeners
To keep the stool soft and to prevent impaction, docusate (Colace, Surfak), at a dosage of 100-500 mg. daily, can help keep fat in the stool and decrease the absorption of water in the colon.

Bulk-forming Agents
Bulk-forming agents such as Metamucil, Citrucel or FiberCon can be used to maintain a stable fiber bulk in the stool and to maintain a generally well-formed stool by increasing the absorption of water and volume of stool. The increased volume in the stool can distend the lumen of the gut and increase the peristalsis, or gut contraction, to move the stool along in the gut. However, any increase or decrease in fiber intake can cause a change in your bowels and may actually slow the colonic transit time in SCI.

Cathartics
Cathartics, which are medications that cause the bowels to move, can be divided into two separate classes: osmotic or stimulant. Osmotic medications include saline laxatives and hyperosmolar laxatives and cause water to be drawn into or kept in the gut, preventing the stools from becoming hard. They also cause mild stimulation of the gut to empty the bowels.

Saline laxatives, such as milk of magnesia, magnesium citrate, and Fleets phosphosoda, act by drawing fluid into the gut and stimulating colonic activity. Hyperosmolar laxatives, which include sorbitol, polyethylene glycol (Miralax, Colyte), and lactulose, are metabolized in the colon into short-chain amino acids and act to draw fluid into the colonic lumen. These medications are much preferable to the stimulant laxatives since they are milder and are less likely to cause a bowel accident. They also are less likely to cause a condition of gut dependency on them.

A stimulant medication that is used frequently is bisacodyl (Dulcolax). It is a contact irritant that increases peristalsis of the gut by direct irritation or stimulation of the colon’s lining. Bisacodyl is available as an oral tablet, suppository or enema.

Senna (Senokot) is another stimulant medication believed to work through the stimulation of the nerves in the gut wall of the colon and tends to stimulate a bowel movement 6 to 12 hours after ingestion. However, long-term complications can include staining of the gut lining and chronic dilatation of the colon which, over the long-term, can lead to a dilated and floppy gut wall. This can result in a chronic ileus (unmoving) and dilated gut.

Suppositories and Enemas
Suppositories such as Dulcolax in suppository form (hydrogenated vegetable oil with bisacodyl), the Magic Bullet (polyethylene glycol with bisacodyl), or Enemeez (previously called Therevac which has 4 cc. of liquid phosphates) can be used as contact irritants to the rectal gut lining to stimulate a bowel movement. The liquid enema and the polyethylene glycol formulation both act more quickly than the Dulcolax suppository due to the slow melting of the hydrogenated vegetable oil.

To save money, some of my patients have used liquid soap in a 3-6 cc. syringe to stimulate the lower bowel to empty. The soap acts as a local irritant and appears to work well for some of my patients. All of the suppositories work by stimulating or irritating the rectal gut lining, causing a spasmodic reaction of the lower gut to push the stool out of the descending colon.

In conclusion, the above medications can be used to maintain a healthy gut and enable a good, controlled bowel program. By knowing how they work and the risks and the benefits, you can use them wisely.

This summer, Camp Aldersgate was the place to be. This year, we had thirty-one campers with spinal cord disabilities attend the Spina Bifida Camp June 27 to July 2.

A mounting ramp was used to assist campers
from their wheelchairs onto horseback.

Each year the campers are divided into two teams or tribes—the Caddo and Quapaw. As always, there was fierce competition between the two tribes. All weeklong the two teams competed in various activities to earn points. These activities included nature hikes, outdoor cooking, arts and crafts, swimming, fishing, drama and music, accessible adventure/challenge ropes course, hand and/or foot driven catamarans, adapted archery, horseback riding and, for older campers, scuba diving.

Friday morning family members and staff filled the new all-purpose building for the awards ceremony. Excitement grew as the campers piled into the auditorium. Each camper received an award. Ariel Dooley of Rector was awarded the “Joe Morgan Super Camper” award. At last the final tally was done, and the winning tribe was announced—this year’s winner was the Quapaw tribe!

Spina Bifida Camp is a collaborative program supported by the Arkansas Spinal Cord Commission, Camp Aldersgate and MedCamps of Arkansas.

If you missed Camp this summer, and want to participate next year, be sure to look for details in the January 2005 Spinal Courier or talk with your ASCC Case Manager.

Fall Activities of Spina Bifida Association of AR

Mark your calendars—the Spina Bifida Association of Arkansas is planning two fun events for children with spina bifida and their families this fall!

The first is Family Fest, a day of learning and fun scheduled for October 30, 2004, at Camp Aldersgate. The day will begin with educational sessions for parents and other individuals, and recreational programs for the kids.

The afternoon will be filled with fun: sports, music and other fun activities, as well as a tour of Camp Aldersgate for prospective campers and their families. Lots of good food and fellowship will be added in, so that everyone has a “ghost of a good time” on the day before Halloween! For more information, contact Vicki Rucker at 501-978-7222.

On Sunday, December 5, 2004, the Spina Bifida Association of Arkansas, in cooperation with the Corvette Club of Arkansas, will host their annual Christmas Party for children with spina bifida and their families from 2:00 to 4:00 p.m. Food, games, music, gifts and a visit from Santa will fill the day. Flyers for the party will go out in early November—make plans to be part of the festivities!

PAC Reps Needed

The Parent Advisory Council, Inc. (PAC) is looking for parents of children 0-18 years of age who have spina bifida or a spinal cord injury to serve on their advisory council to Children’s Services (formerly known as Children’s Medical Services).

Representatives will be expected to serve as liaisons between the families of children with special health care needs and Children’s Services (CS). As a liaison, the PAC representative will bring to CS the issues that affect the lives of these families and make appropriate recommendations.

Representatives attend Council meetings held quarterly Friday nights and Saturday mornings usually in the Little Rock area. Children’s Services is responsible for the Friday night buffets, Saturday morning breakfasts and Friday night lodging and mileage to the PAC meeting.

If you are interested in serving on PAC, or if you have any questions, call Rodney Farley at 1-800-482-5850, ext. 22277, or 682-1461.

Fifteen years ago Bobby Johnson joined the Commission as Case Manager in the Pine Bluff office. Over the years Bobby has developed an excellent rapport with his clients and has made a point of establishing positive working relationships with other health care professionals. Bobby provides case management services to 184 individuals with spinal cord disabilities in Southeast Arkansas.

According to ASCC Client Services Administrator Patti Rogers, “There isn’t a task that Bobby will not undertake. His willingness to do whatever it takes to locate needed resources for his clients has been the key to his success as an ASCC Case Manager. He is an easygoing individual who never fails to welcome you with a smile.”

Bobby obtained his degree in Sociology/Gerontology from the University of Arkansas at Pine Bluff. Before his employment with ASCC, Bobby’s experience included being a policeman, probation officer and youth counselor. Having such a diverse background has served him well in his position as ASCC Case Manager.

Now that Bobby has become one of the “experienced” Case Managers, his advice to new Case Managers is, “Don’t get overwhelmed—just take one day at a time. Develop your own way of organizing your caseload and know the resources in your area.”

PROFILE:

Date And Place Of Birth: March 20, 1962, in Dermott, AR

The Animal I Most Identify With Is: Lion

I Absolutely Will Not Eat: Chitterlings

If I Did Not Live In Van Buren, I Would Want To Be: On the West Coast

My Favorite Movie Is: Mel Gibson’s Passion of the Christ

My Favorite Song Is: Wind Beneath My Wings

The Guests At My Fantasy Dinner Party Would Be: Halley Berry, Alisha Keys, Vanessa Williams, Oprah Winfrey, Sharon Stone, Tyra Banks and Madonna

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

My Favorite Pastime Is: Reading and watching football games

My Pet Peeve Is: People who “Know Everything” and have “Done Everything”

The Best Advice I Ever Received Was: Never put off for tomorrow what you can do today

My Favorite Saying Is: “You must not measure a man by the heights he has reached, but by the depths from which he has come.” - Frederick Douglass

I Knew I Was Grown Up When: My key would no longer work at my mother’s house

The Latest Book I’ve Read Is: Building Wealth written by Russ Whitney

The One Thing I Always Wanted To Do But Have Never Had The Chance Was: Drive a real race car on a race track

My New Hobby Is: Fixing up old houses

One Word To Sum Me Up: Passionate

The Arkansas Rollin’ Razorbacks and Junior Rollin’ Razorbacks have announced their schedules for the coming season.

The Rollin’ Razorbacks will be playing at the Arkansas Invitational Tournament on November 6th and 7th in Little Rock and the Arkansas Valley Conference Tournaments in Fort Smith on December 18, 2004, and in Little Rock on February
12, 2005.

The Junior Rollin’ Razorbacks will be playing in Hot Springs November 19-21, 2004.

The full schedules for both teams are posted on ASCC’s web site www.spinalcord. ar.gov in the “Upcoming Events” section. For additional information you can contact Rollin’ Razorbacks Coach Jared Johnson at 501-240 1529 or Junior Rollin’ Razorbacks Coach Doug Garner at 501-525-4503. Please contact Doug Moore at 479-474-0825 for information about the Fort Smith Shooting Stars.

ADSA 2004-05 Hunting Schedule

Here is good news for hunters and outdoor enthusiasts! The Arkansas Disabled Sportsman Association (ADSA) has scheduled numerous hunts for fall and winter:

HOST	DATE	TYPE
Dream Catcher	Sept. 4-5	Dove
Greeson	Oct. 11-13	Deer
Nimrod	Oct. 18-19	Deer
Mountain Home	Oct. 19-21	Deer
DeQueen	Oct. 20-22	Deer
International Paper	Oct. 22-24	Deer
Dream Catcher	Oct. 23-24	Deer
Greeson	Oct. 25-27	Turkey
Heber Springs	Oct. 26-27	Deer
Clarksville	Oct. 30-31	Deer
Clearwater, MO	Oct. 30-31	Deer
Millwood	Nov. 16-18	Deer
Dream Catcher	Nov. 21-22	Deer
Columbia, LA	Dec. 3-5	Deer
Arkansas Post	Dec. 3-5	Deer
DeGray	Dec. 4-5	Duck
Dream Catcher	Dec. 4-5	Deer
Arkabutla, MS	Dec. 6-11	Deer
Cooks Lake	Dec. 10-12	Deer
Dream Catcher	Dec. 20	Deer
DeGray	Jan. 8-9	Duck

For more information about these hunts, contact Toney LeQuieu at 870-932-0440 or 870-933-5254 or Jimmy Ashley at 870-935-6875 (home) or 870-919-5590 (cell). Happy hunting!

McCluer Education & Resource Center News

Fall is here and it’s time to enjoy the outdoors before winter sets in. To help you best use your time and energy, the Resource Center has videos that promote recreation, sports and exercise.

Two such videos in the resource library that may inspire you to get out and enjoy the outdoors are No Barriers and Beyond the Barriers. Both films follow Mark Wellman as he surfs, sails, climbs, flies and dives around the country. Watch these great adventures!

A new video, Kiss My Wheels, follows the journey of the Zia Hot Shots, a nationally ranked junior wheelchair basketball team as they compete with others around the country. The video shows this coed group of young athletes as they go through many ups and downs. See this inspirational video today!

Don’t forget we still have complimentary copies of Accessible Living, a video that tours the homes of four Arkansas Spinal Cord Commission clients and features home modifications, overhead tracks, elevators and universal design. To request a free copy while supplies last, call Judith at 501-296-1792.

Interested in a Hot Springs
SCD Support Group?

Several persons have called Kim Brown, ASCC Case Manager in Hot Springs, about a spinal cord disability (SCD) support group in Hot Springs. At the present time there is no such support group. Kim wants to know how many persons would be interested in participating in a SCD support group, on either a monthly or quarterly basis.

If you would like to be part of a spinal cord disability support group in Hot Springs, please contact Kim Brown in the Hot Springs ASCC office at 501-623-4479 or e-mail her at kbrown@arspinal cord.org. You can also fax her at 501-623-1217.

SPINAL COURIER

Commission Members: Jimmy Ashley, Chair, R. Doug Foster, M.D., James Miller, 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.spinalcord.ar.gov or e-mail us at: courier@arspinalcord.org