 |
||
| Vol. 13, No. 4 |
July 2002 |
www.state.ar.us/ascc |
“Disability to Ability” Enjoyed by All!
Zanetter
White and son Randrell, of Warren, AR On May 31, 2002, the Arkansas Spinal Cord Commission (ASCC), with the Spina Bifida Association of Arkansas, held its tenth conference at the C. A. Vines 4-H Center in Ferndale. ASCC hosted over 230 clients, family members, professionals, speakers, staff and vendors in the largest attended one-day conference to date. Entitled Disability to Ability, the conference offered a variety of opportunities to learn about spinal cord disability related issues. Keynote speaker Randy Snow brought the packed auditorium to its feet during the opening session. His dynamic speaking ability and charisma definitely left the audience wanting more. Other highlights included Dr. Edgar Garcia-Rill presenting the latest strategies in spinal cord injury research, Dr. Tom Smith’s educating children under IDEA and 504 and Dr. Tom Kiser’s session on management of spasticity in spinal cord injury (SCI).
Young
Spencer Dudzik of Clinton, AR is caught Ample opportunities to meet with the exhibitors at the conference were available. Exhibitor booths provided information on services ranging from personal care products, medical technology, new wheelchairs and van modifications. A number of great door prizes were awarded this year. U.S. Med Mark of Little Rock donated two $50 bills and winners, Bettie Lou Grinning and Verla Claghorn, were practically jumping with joy as they received their prizes. Fred McLain won a tub transfer bench donated by National Seating and Mobility of Memphis and Erin O’Brien won a 40-piece tool set donated by WalMart of Jonesboro. The Commission expresses thanks to all of the businesses who made the drawings successful by donating door prizes. If you didn’t come to this year’s conference, make your plans now to attend one of the Commission’s miniconferences next year. Don’t miss the knowledge you’ll gain, as well as the fun you’ll have!
Margaret
Morris of Little Rock, AR is
Debbie
Cummings, CTRS at St. Vincent Rehabilitation
Bettie
Lou Grinning of Hot Springs, AR
Randy
Alexander with Project-AWIN of Pine Bluff, Benny Beals Retires
ASCC
Executive Director Cheryl Vines presents After 25 years with ASCC, Case Manager Benny Beals retired on June 28, 2002. Since 1977, Benny served as Case Manager in the Fayetteville office. His motto: “You must have convictions and standards by which you live your life,” was reflected in his 25 years with the Commission. As his coworkers and clients can testify, Benny is a “man of few words,” but within those words are much depth, humor and wisdom. Always a good listener, Benny used this attribute in skillfully assessing his clients’ needs. His best advice for his clients was, “Maximize what you have. Don’t concentrate on your limitations—everyone has limitations.” His fellow staff members and those individuals he served will miss Benny’s dedication and soft spoken manner, along with the ingenuity and resourcefulness he displayed in providing case management services. His ability to provide technical assistance to other agencies, families and community organizations in his role as ASCC Case Manager will unquestionably be missed in the northwestern area of Arkansas. ASCC Executive Director Cheryl Vines presented Benny with a plaque for his 25 years of dedicated service to the Commission at the statewide spinal cord disabilities conference on May 31, 2002. Plans are being made to have a retirement luncheon in his honor later this summer. Music has always been an important part of Benny’s life. As an accomplished guitarist, he has won many awards throughout the years. With his new found freedom of retirement, Benny plans to increase his guitar playing time. Who knows—we may see Benny’s name in lights at Branson in the future! Whatever his future endeavors we know Benny will be successful and we wish him the best.
Clothing Name LabelsDear Readers: I’ve found a good source for iron-on clothing name labels that may be of use to you. We recently had to move my mother-in-law into a nursing home and one of the requirements was that all her clothing had to have her name on it. We tried various marker pens but found them messy and hard to use on some items of clothing. A search of the Internet turned up ConnText Label Company that offers a wide variety of cotton iron-on name labels at reasonable prices. We purchased 50 labels for $7, including postage. They worked great. However, I would recommend ordering twice as many labels as you think you need; we quickly used them all. ConnText can be reached at www. conntext.com or at P.O. Box 1024, Great Barrington, MA 01230, or FAX them at 1-888-766-2985. Besides residents in nursing homes, these labels would be great for kids at camp or school and travel. Tom Farley, Editor From
the Director One of my favorite times at the Commission is when we have our conferences. Whether it’s a regional conference somewhere around the state or our statewide conference every other year in Little Rock, I always look forward to it! These are the times I learn the most about who it is that the Spinal Cord Commission serves and what those folks need and want. I get to hear first hand about people’s concerns as well as their accomplishments. Over the years I’ve watched a lot of folks grow up, some grow old and we’ve lost more than a few. But I also get to meet moms of new babies and folks who are “new injuries” and I know that we are indeed serving an important purpose. It’s also a great time to see colleagues and friends who are our partners in providing services and learn what’s new! Our conferences are a good place to learn about what’s new—that’s why most of you come! This year we heard about medical issues, dealing with systems and the latest in SCI repair and regeneration. We heard Randy Snow, a motivational speaker from Texas, who made us all laugh and challenged us each to push forward. If you missed his talk, his book, Pushing Forward, is in our Resource Library—it is worth the time to read. Thanks to all of you who attended Disability to Ability this year. Hope you got as much out of the day as I did! I have a challenge for you too! At our conference, I visited with Ms. Frances Burnett. She asked me a question I didn’t know the answer to, so I’m passing it on to all of you. Ms. Burnett isn’t telling her age but she has lived with her spinal cord injury since February, 1947—over 55 years! She asked me if she held the record for Arkansas. Is there anyone who lives in Arkansas and was injured before 1947? If so, please give me a call. Ms. Burnett and I want to know! Have a great summer; try to stay cool! With ThanksDonations received this quarter: In
honor of Steve Burris In
memory of Richard Land In
memory of Henry Smith In
memory of Nonie Stacy 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 Special Show 2002The Arkansas Department of Education, Special Education Unit is sponsoring Special Show 2002 — Linking for Success on August 6 and 7 at the Statehouse Convention Center in Little Rock. At the general session on Wednesday, August 7th, Tom Whittaker, the first person with significal physical disabilities to climb to the summit of Mount Everest, will speak on “Riding the Avalanche.” The conference will cover a wide range of topics of interest to parents, general classroom and special education teachers and supervisors, administrators, paraprofessionals and other professionals and support personnel that work with students with disabilities. Topics will include autism, behavior disorders, ADHD, inclusion modifications, ESL, assessment, transition, curriculum, co-teaching and much, much more. The cost of the conference is $65 for both days and includes lunch on the first day of the conference and a buffet breakfast on the second morning. For more information, visit the Special Show link on the ADE website at http://arkedu. k12.ar.us/pdf/special_show.pdf or contact the Arkansas Department of Education, Special Education at 501-682-4222. Managing Your Bowel Program, Part 2By Tom Kiser, M.D., ASCC Medical Director
In my last article I discussed the basics of a “good” bowel program. In this article I would like to address more aggressive options, and potential developments which may become available in the future. You may want to look into these options if you are having a lot of difficulty with your present bowel program, or if you need to do your bowel program another way simply to improve your quality of life. In general, try to avoid chronic use of rectal enemas, because this can result in over stretching of the lower bowel and chronic dependence on enemas. However, there is a system that may be lower risk, because it uses a low pressure, pulsed lavage system to evacuate the lower colon of stool. This system is called the Pulse Irrigated Evacuation (PIE) system and is commercially available. I do not have a patient on this system, so I have no practical knowledge of its use. The PIE system has not been rigorously researched, so it must be approached with these limitations in mind. Low-pressure antegrade enemas via a surgical opening to the right colon are another option to consider. A catheter is implanted into the right (ascending) colon through the skin with x-ray guidance of a CT scan. At the Arkansas Children’s Hospital it is being used successfully in individuals with Spina Bifida. Another method is a permanent opening, created surgically. This method does not require placement of a catheter. The principle is the same, however: using either the catheter or the permanent opening, a low-pressure enema kit gently flushes the entire colon of all stool. Sacral Root Nerve Stimulation with an implanted device was commercially available until last year, when the company stopped selling it because it was unprofitable. By stimulating the sacral nerves to the lower colon and rectum, the evacuation of the lower bowel was greatly enhanced. At some point in the future this device may return to the market. A magnetic stimulation system, which can stimulate the sacral nerves to empty the lower bowel without requiring surgery, is currently being researched in animals. The magnetic device is placed over the skin near the sacral nerves. Time will tell whether this method proves as effective as the implanted device, and whether it will be affordable. The final option I would like to discuss is a colostomy. The colon is surgically opened and sewn to the lower abdominal wall, and stool is collected in an external colostomy bag. If your bowel program is going well and you are not having problems, I do not recommend a colostomy. However, I have had several patients who have decided on a colostomy after we have discussed all the other options. One individual needed the help of a caretaker to perform his bowel program and had a job that required him to travel. This person elected to have a colostomy because he could manage it independently, and he has been happy with this choice. Another individual was unable to heal a pressure sore because he had to conduct his bowel program sitting on a bedside commode. After a surgical flap and a colostomy, the pressure sore is healed and he is quite satisfied with the outcome. The important thing is to discuss the options and your current bowel program with your rehabilitation team (doctor, therapist and nurse), and talk with people you know who use the option you are interested in learning more about. Your decision will be based on many factors and will ultimately be your choice. SAILS DeGray PlayDay X August 24th
Mark your calendar now for the SAILS (Spa Area Independent Living Services) tenth annual DeGray PlayDay, Saturday, August 24th at the Caddo Bend Swimming Area of DeGray Lake near Arkadelphia. Activities start at 10:00 a.m. and usually wind down about 4:00 - 5:00 p.m. As always, a picnic lunch is provided at noon. This is the tenth year for SAILS to host the one-day event providing people with disabilities from throughout the state the opportunity to come and try different types of recreational possibilities. Volunteers will be available to assist you in doing whatever you wish to try—scuba diving, party barge, boat and jet ski rides, swimming, bingo or beach vollyball. As always, the first registrants get an official DeGray PlayDay tee-shirt. This year’s color is tie-dyed, really appropriate for the tenth year . . . using all the previous colors for the last nine years! Make your plans now to join SAILS Saturday, August 24th, 10:00 a.m. at DeGray Lake. For further information, call 501-624-7710 or toll free at 800-255-7549. Arkansas Heat Can Be Deadly !It’s
July in Arkansas and things are heatin’ up! It’s also time to
remind those with tetraplegia and high paraplegia that h Symptoms of overheating for persons with SCI are vague but may include headache, rapid pulse, weakness and fatigue. Ifyour temperature is high and you don’t suspect a fever, then cool down immediately! Body
temperatures over 100 degrees should be treated as a medical emergency.
Remove the heat source (if possible) or move to a cooler environment.
Cool the body as quickly as possible by removing clothes and applying
wet towels or sheets. Seek emergency room (ER) care immediately and inform
the ER personnel that overheating is suspected.
Summer heat can be deadly but can be prevented. Take steps now to keep your cool! Disney World Accessible Home RentalsWill you be visiting Disney World this summer? If so, you may be interested in a new accessible vacation rental housing program located in Kissimmee, FL being offered by Medical Travel, Inc. They have villas with three bedrooms/two baths in the Somerset Resort Community that are only four miles away from Walt Disney World. The units will also offer heated pools, sauna, jacuzzi, game room, tennis, billiards and exercise room at no extra charge. For more information, visit their website at http://www.medicaltravel.org or call 800-778-7953. SCI Research – What’s New?
Not too many years ago, SCI researchers were hard to find. These days, however, a wide variety of researchers are making real gains into this complex problem. The following web addresses discuss the exciting research being conducted in the SCI field today. Also, most of the sites have other useful links about SCI research. www.apacure.com
www.spinalvictory.org
www.electriciti.com/~spinal
www.miamiproject.miami.edu
www.proneuron.com/MacrophageTherapy.html#
www.spinalcord.org/resource/Factsheets/factsheet6.html
www.cbsnews.com/stories/2001/06/14/48hours/main296526.shtml
http://depts.washington.edu/rehab/sci/forum-research0501.
shtml www.cnn.com/2000/health/12/11/spinal.cord.research.ap/index.html
www.miamiproject.miami.edu/miami-project/Library/nl9904/nl990467.htm
Accessible Art Web SiteAccess Art, a collaboration between the Dayton Art Institute and Wright State Univesity (WSU), makes art accessible to virtually everyone with a computer and an Internet connection—including people with visual, hearing and mobility impairments. Using the latest accessiblity standards and techniques, Access Art will provide alternative content in formats so people with adaptive equipment may easily navigate through the site. Since many people with mobility impairments do not use a mouse, the site’s image-enlargement system lets them zoom in on an image by using a keyboard or similar device. Access
Art will allow visitors to select several tour options to explore the
Art Institute’s collection. Guided tours organize artwork according
to selected themes, while custom tours are based on visitors’ own
personal interests or preferences. Check out the site at www.daytonartinstitute.org/accessart.
Copyright 2002, Paralyzed Veterans of America, by permission of PN/Paraplegia News. Philadephia
Arts Guide
|
||
eat
can be deadly. Persons with spinal cord injury (SCI) do not tolerate heat
well because of the body’s impaired ability to sweat.As a result,
the body does not cool normally and body temperature rises to dangerous
levels. 
The
Arkansas Rollin’ Razorbacks progressed to their 13th consecutive
National Wheelchair Basketball Tournament (NWBT) March 29 - 30 in Champaign,
IL. They won the East Regional and entered the NWBT as the #1 seed! Unfortunately,
another national championship was not to be, as the Razorbacks were upset
in the first round by the Phoenix Wheelchair Suns, 62 to 66. They ended
the season ranked third. 
