CODI: Cornucopia of Disability Information
T H E S P I N A L C O L U M N
THE SPINAL COLUMN
JUST A THOUGHT
Tort reform is not a cooking term. The tort laws of this country help compensate consumers for the negligence of manufactures and service providers. In the past three years a manufacturer has been successfully sued for a cracked weld in the front fork of a mountain bike. The rider, now a quadriplegic, was awarded enough to cover his living and medical expenses for the rest of his life.
Not long ago another quad won a settlement against a hotel chain because of a sloping bottom in the diving well of the hotel's swimming pool.
Without the tort laws, these quads would most likely have become burdens upon the government for support and medical care. With the tort laws, the manufacturers and service providers pay the cost.
Supporters of tort reform cite cases similar to the hot coffee spill at a fast food restaurant and the $2 million award in the touch up paint job on a new car.
Large punitive damages are actually the exception rather than the rule.
The changes in the tort laws are designed to address less than 1 percent of all the civil cases that are files each year. Congress has its finger in the pie and if you want to prevent them from escaping with the filling, the time to act is now. Get informed! Call your congresscritter!
Almost all quads at sometime in their life will have to deal with the unpleasant fact of having a kidney stone.
Stones form for many reasons. If you don't drink enough water, for instance, you won't have enough urine to dilute chemicals. Then the chemicals may form crystals, which can develop into stones.
A stone can be as small as a grain of sand or as large as a golf ball. Many small stones pass naturally. Medium-sized stones are often crushed with special "high-tech" equipment. Very large stones may require surgery.
The composition of the stone can help reveal its cause and often suggest the form of treatment. There are basically three types of stones. Most stones are calcium oxalate, then there are cystine stones and finally infection stones.
Calcium oxalate stones are composed of a hard salt compound. These are normally very small, smooth, round stones which often pass easily. Calcium oxalate stones can often be controlled by watching your diet and drinking lots of fluids.
The uncommon and inherited cystine stones are also dense and come from too much amino acid in your urine. These stones normally require a lifetime of medication, a high fluid intake, and an eye to avoiding certain foods.
The uric acid stone is cause by an over production of uric acid. These stones can be prevented by drinking lots of fluids and avoiding a diet with lots of meat. Like the cystine stone, the uric acid stone can be dissolved with medication.
The stone most troublesome to the quad is the stone caused by repeated bladder and kidney infections. The repeated infections change the chemical balance of the urine. Treatment often requires antibiotics for several months or years. Because of their jagged shape these stones are seldom passed easily and often require removal.
Sometimes when the stone cannot be passed naturally or dissolved with medication you may be a good candidate for ESWL. Better known as Extracorporeal Shock Wave Lithotripsy, this technique safely and effectively "shatters" without surgery. There are several types of ESWL, but the principles are the same for all. While you sit in a water bath or on a water cushion, a rapid series of high-energy shock waves are fired through the water at your stone with pinpoint accuracy. Without injury to your body, the stone then crumbles into very fine sand particles, which then pass easily.
ESWL takes only about an hour and is often performed as an "in and out" procedure. First, your doctor locates your stone with an x-ray or ultrasound. You may or may not need general or local anesthesia, depending on the type of ESWL machine used.
After several hours in recovery and a little blood in the urine most people are free of stones in less than three months. Some individuals may need additional ESWL treatments if their stones are extremely dense or large.
Kidney stones are now treated so successfully with drugs and lithotripsy that there is seldom a requirement for surgical intervention. But, being quads, many of us are often faced with the necessity of have surgery before, after, or instead of the easy treatments.
If you have a stone in your ureter, it can usually be removed without any cutting. The doc just slips a little tube into your ureter and "lassos" the stone and removes it. This procedure can often be done on an outpatient visit.
Stones larger than an inch in diameter require a procedure called "percutaneous lithotripsy". This requires the doc to punch of few holes in you and insert a couple of tubes. Through these tubes he sights your stone, shatters it with the ultrasound shock waves, and removes the pieces. The holes vary in diameter from the size of a small fountain pen to the size of a garden hose.
The "percutaneous lithotripsy" procedure usually requires a short hospital stay of 2- to 3-days and several follow-up visits.
The worst case scenario is a large staghorn stone in the kidney pelvis. Individuals with these large or oddly located stones need open surgery. This requires your doctor to make a 7- to 10-inch incision in your side, open your kidney, and remove your stone.
This surgery often lasts for several hours, requires about 10 days in the hospital, and a couple of months rest at home to recovery fully.
Getting rid of the stones is the first step in your treatment process. You can reduce your risk of forming new stones by drinking lots of fluids, taking any medications prescribed, and watching your diet.
Freedom Writer is a powerful, full-featured word processing program for physically impaired persons who cannot use a standard computer keyboard. The program features an "on screen" keyboard; characters or frequently used words are selected directly with a mouse, joystick, or light pen. Selections can also be made by scanning with a single switch or through voice input. The program operates on IBM or IBM-compatible computers. For more info contact: World Communications, 501 Glenmoor Circle, Milpitas, CA 95035; 408-262-2870.
A FISHY NOTE
Researchers believe that salmon brains may help human spinal cord injury research. The brain of the coho (silver) salmon undergoes a major reorganization just before the salmon heads downstream on an odyssey that will end 18 months later in the very stream in which it hatched. This fact could unlock clues which could treat injuries to the brain or spinal cord in humans, while at the same time unraveling the mysteries of how salmon find their way home to spawn. For further info Call Dr. Sven O. E. Ebbesson, (907) 474-6197, or Sea Grant Science Writer Doug Schneider, (907) 474-7449.
If you saw him relaxing on the patio with his wife and two sons you might not realize the Rocky Mount, N.C. native had sold $2.5 million worth of homes during the past year or had received the Salesman of the Year award from Ruby Braswell Realty.
Rather an impressive year for anyone to have achieved, yet it's even more impressive when you consider 38-year-old Jack Langley accomplished all that from the confines of a wheelchair and a hospital bed. He was born on Easter Sunday 1948 -- an appropriate date for a man whose life reflects hope, courage and the determination to start anew. A car accident almost four years ago left Langley a quadriplegic. "On July 8, 1982, we were returning from King's Dominion (amusement park)," he said. "There was a tractor-trailer tire in the left lane. I lost control. I was not wearing my seatbelt. I don't remember (after that). My memory picks up at the hospital."
Langley spent 60 days in a hospital in Petersburg, Va., then 30 days at Pitt Memorial in Greenville. He spent five months in the rehabilitation center there.
But that was only the beginning. "I don't have any sensation from my chest down," Langley said, then went on to explain how a person generally shifts position when a lack of circulation becomes noticeably uncomfortable -- when a leg seems to "fall asleep."
But since Langley has no sensation, moving becomes a necessity rather than a reflex. Without redistributing his weight, painful pressure sores can develop.
To prevent this, he practices a system of "boosting," in which the arms on his wheel chair are lowered, allowing him to move from side to side. "I don't do that as frequently as I should," he said. Langley was readmitted to the hospital last August for an operation on a pressure sore.
"I was in the hospital from Aug. 28 to Dec. 24. I came home and was up for a week when the incision line opened up," he said. Shortly after, another pressure sore developed. With the help of his insurance, Langley purchased a $23,000 air floatation bed which, he hopes, will aid in the prevention and the healing of these sores.
"I virtually have no use of my fingers," he said. "I can write with a cuff. "It's great. It's a very versatile piece of equipment. I don't know what we did before we had velcro," he said.
Although the accident left him physically weak, it didn't rob him of his will to succeed.
A graduate of Methodist College in Fayetteville with a degree in business administration and economics, Langley was licensed by the N.C. Real Estate Licensing Board in 1977 and began selling a year later.
"Until I got into real estate I had not found a career I enjoyed a great deal," he said. "It's so diverse. I'm always dealing with new people -- different financial backgrounds.
"An average work day can be quite varied. I go to the office, make my calls, check on loans in progress, do detail work and then spend the majority of my day on the telephone either talking with prospects or past clients trying to find new prospects."
He joined Ruby Braswell Realty in November 1983. "I was sales manager. Then in 1985, I decided to get out of management and just sell," he said. Langley's achievements last year actually took place in eight months rather than 12. With the exception of one house, he completed his volume of sales before he had to return to the hospital in August.
"I'm anxious to get back to work on a full-time basis," he said. "I still work, but I'm not nearly as effective lying in a bed as I am when I'm up. "I am really more highly motivated to sell real estate because I have fewer distractions. I can't play tennis or golf.
"There have been times when the struggle gets to seem insurmountable. I had very intensive physical therapy. I had gotten so weak from lying flat. But I've never had to look too far. I've tried to count my blessings rather than my misfortunes."
DIAMOND STATE HEALTH PLAN (Medicaid Managed Care)
Effective January 1, 1996 most Medicaid beneficiaries will be enrolled in Managed Care Organizations (MCOs). If you are a person with a disability and you are eligible for Medicaid and you do not have Medicare, then you will be asked to select an MCO. Other people who are not eligible for this program include those people in the Long Term Care program and those people who are already in the Home and Community waiver program. Early in November you will receive a letter from the State's Health Benefits Manager (HBM). You will be given a list of the Managed Care Organizations available to you and you need to select one of these MCOs.
If you already have a doctor or provider with whom you have a good relationship and they understand your specific challenge, then you should select an MCO that contracts with your provider. The HBM can provide you with that information. You will continue to receive the same benefits that you receive now. You will have the HBM to act as an advocate should you have a problem. You may also call the Medicaid Advocate at your chosen MCO and you may always call the State to discuss a problem.
This new program, Diamond State Health Plan, will give you the advantage of a Primary Care Provider (PCP) to provide your primary and preventive health care. This PCP will refer you to specialist and hospitals should you need them. You should go to the emergency room only in a true emergency situation and always keep your PCP informed. Individuals with a spinal cord injury are considered to require special treatment under the plan. They should contact the Health Benefits Manager to arrange an MCO who covers all the physicians involved in providing care.
If you have a challenge that you believe needs special treatment, the State will review this on a case by case basis and may agree that the MCO you have chosen will need to use a provider that does not contract with that MCO to provide your care. If you are eligible for the Diamond State Health Plan, you must select an MCO and a Primary Care Provider. For more info call 1-302-577-4900.
EMPLOYEE OF THE YEAR
James Fee Jr., a research engineer at the Alfred I. DuPont Institute, was named Employee of the Year by the Governor's Committee on Employment of People with Disabilities. Fee, whose work on assistive technology has improved the quality of life of many Delawareans with disabilities, was honored at a luncheon at the University of Delaware. He has a masters degree in mechanical engineering and is engaged in research at the Applied Science and Engineering Laboratories of the University of Delaware at the A. I. DuPont Institute. He also has been involved in projects related to augmentative communications. Fee can be reached via the Internet at firstname.lastname@example.org
THE AGING DRIVER
A friend here in Delaware just discovered the freedom and thrill of driving on his own. Another friend in Nebraska just decided that, at 51, he was getting too old to be driving.
The aging process affects everyone's ability to drive. The disabled driver, however, undergoes the aging process earlier due to stress on the body caused by medications and surgeries or by pushing a wheelchair and other activities the human body was not designed to do. When cars and vans are first equipped for the disabled person it is done based upon the driver's strength and range of motion at the time of evaluation. For many disabled drivers, this can be close to 100% of their ability. If drivers lose ability due to aging, it is important they realize this and change the adaptive equipment to compensate. This is especially important for drivers who are marginal in their ability to steer and brake effectively.
There are several ways to prevent problems associated with the effects of aging from interfering with your driving. If you are taking medications, such as pain killers, antiarthritics, and antispasticity medicine, use extreme caution and check with your doctor. If you are over 55, have your eyes checked regularly.
Get a regular examination by an occupational therapist to detect any problems that may be robbing you of strength and stamina. As part of this examination have the flexibility of your shoulders and elbows checked. Make sure you do regular range-of-motion exercises of your arms and shoulders to retain your flexibility. This is important in order to retain your full steering and braking ability.
Stop and think about the switching, steering, and braking functions of the hand controls. If any of these feel uncomfortable or are difficult to use, contact your equipment dealer or OT for help in making the controls easier to use. Check your wheelchair tiedowns. New tiedowns offer vastly improved safety advantages over the ones available as recently as ten years ago.
When is the older driver unsafe? When is it time to stop driving? Most experts agree that it is when the driver no longer feels safe and in control of the vehicle. But, it is often difficult to make a determination. The American Automobile Association (AAA) has a nice little booklet which asks a series of questions related to driving performance. It then explains the answers and tells why each question is important. Contact the AAA near you and ask for "Drivers 55 Plus: Testing Your Own Performance." If you feel you can still drive but might need some improvements in your equipment, then contact your equipment dealer or OT for help.
ASK THE EXPERTS
The one thing needed by many disabled individuals is answers to questions about their disability. The information may not be medical in nature, but could be a combination of questions concerning fears and the future. Many agencies that deal with the variety of disabilities that are now identified can answer questions. However, callers may have to wait for a call back while the question is researched by an employee or volunteer. People who belong to a support group can call another member to ask questions and quite likely get an immediate response. But if you are newly injured, access to a support group and experts who have lived with your problem may not be available. Yet one resource remains. The National Spinal Cord Injury Hotline, a toll-free information and referral service, is available to individuals who have sustained a traumatic spinal cord injury.
The group was founded in 1984 by Karen Colvin, who had a spinal cord injury in 1983. Colvin was a nurse for eight years. When she returned home from rehabilitation, she found that she had a wealth of information gathered from her husband, rehabilitation resources and elsewhere. She didn't want to discard anything, so she began the hot line service to share the information with other injured people.
The service was originally financed by the University of Maryland and then by the American Paralysis Association. Since September 1994, it has been fully financed by the Paralyzed Veterans of America. The hotline fields questions covering all areas of injury, such as immediate care, personal hygiene, pain, wheelchairs, recreation and fertility.
The hotline is staffed by 500 volunteer peer counselors. Counselors who are not disabled may be a parent, spouse or sibling who has learned about the needs of the disabled. Referrals are also made to professionals with spinal cord injury expertise, as well as to rehabilitation facilities. Literature is available, as is information on organizations within the caller's area.
For further information contact the National Spinal Cord Injury Hotline, 2201 Argonne Drive, Baltimore, MD 21218 or call 1-800-526-3456.
QUAD IS MS. WHEELCHAIR NEW JERSEY
Quadriplegic Nancy Starnes of Sparta, N.J. has been named Ms. Wheelchair New Jersey. Unlike the Miss America contest, the Ms Wheelchair title is bestowed upon a woman who can become a voice for people with disabilities. The contestants are judged on personal achievements and accomplishments since the onset of their disability. They are also judged on community relations and personal presentations and demeanor. Starnes sustained a spinal cord injury in the crash of a private plane in 1973. Following rehab, she continued to meet the challenges of having a family and pursuing a career. She left her stock brokerage firm to enter the world of politics and became the first woman to serve on Sparta's Town Council. In 1984, she was elected Mayor. She established the Office for the Disabled as part of the Sussex County government and currently serves as Director of the Morris County Office for the Disabled. Starnes has extensive experience in television on a local and nation level. In addition to her title as Ms. Wheelchair New Jersey, Nancy Starnes has been named Women of the Year by Soroptomist Internation and was awarded the Women of Achievement by the N.J. Business & Professional Women. Nancy will represent New Jersey in the National Ms. Wheelchair Contest in Anaheim, CA.
GET YOUR FLU SHOT NOW!
Two years ago I ended up in the hospital and on full oxygen because the flu bug I got turned into pneumonia. This is the time to get your flu shots. Flu shots will be available throughout the country and many communities are making an all out effort to reach everyone. Many private doctors provide the annual immunization, but the shots may be available at a lower cost at local clinics, drug stores, senior centers, and public health outreach programs.
The American Lung Association and most public health agencies are targeting high risk individuals and the shots may be free or less than $10. The VNA is operating many outreach clinics and is not charging the elderly or disabled who have Medicare Part B. The VNA Flu Prevention Campaign is sponsored by nine corporations. Although the word "flu" is used for stomach and intestinal bugs, mild feverish illnesses and bad colds, and what doctors call "flu-like illness," true influenza is really an acute respiratory illness.
Influenza begins with a sudden onset of high fever and run-over feeling. Muscle aches and headaches are common, and then bad cold symptoms: runny nose, sore throat and dry cough. Symptoms last up to a week and may leave feeling tired and weak for another week or two. For the quadriplegic and the other disabled, flu can be fatal and lead to pneumonia, which also can be fatal. During a flu-epidemic year influenza can account for 20,000 deaths. There are two types of flu. Both mutate into different strains, and each year the flu viruses making the rounds are different from those of the year before. This is why a new flu shot is needed each year. A flu shot will not cause you to get the flu. Less than a third of those receiving the flu shot will experience any ill effects. At the worse the flu shot might cause some soreness around the injection site and maybe a slight fever for a day or two. If you are allergic to eggs there is also a slight chance that you may have an allergic reaction to the flu shot.
A flu shot does not guarantee that you will not get the flu, but it does work for about 70 percent of the people, and reduces the effects in the other 30 percent if they become infected. Getting a flu shot be a yearly event that you schedule when the leaves start to turn and the frost is one the pumpkin.
FREE OUR PEOPLE
Speaker of the House of Representatives Newt Gingrich met with a delegation of disability activists from ADAPT (American Disabled for Attendant Programs) recently in the Capitol Rotunda to discuss redesigning Medicaid funded long term care and support for a national attendant services bill. Speaker Gingrich agreed to sponsor a national attendant services bill called CASA, Community Attendant Services Act, and to include ADAPT in efforts to redesign Medicaid and long term care.
In addition Speaker Gingrich reaffirmed his belief in community-based services as the preferred means of providing long term care. He agreed that institutionalization should be the last option and that people with disabilities should have real choices in the community. Speaker Gingrich's said his office would be releasing a press statement announcing his endorsement of the Community First policy and the principles included in CASA.
ADAPT's representatives traveled to the meeting from Georgia, Colorado, Pennsylvania, Kansas, Kentucky, Illinois, Michigan, Massachusetts, Utah, Tennessee, Texas, and Wisconsin. ADAPT, a grassroots, disability rights organization, has waged a long fight for a national attendant services program. When Speaker Gingrich refused to meet with the group, and appeared to withdraw his previous support for these reforms, ADAPT staged two days of protest at the Speaker's Capitol and district offices, and at his Capitol hill home.
"This is a historic meeting. The disability community has worked long and hard for attendant services. We are very excited the Speaker has agreed to support us and work with us" said Mark Johnson, of Georgia ADAPT. "We will be making dramatic changes for the better if the principles included in our proposed legislation, CASA (the Community Attendant Services Act), become a part of this year's legislative accomplishments. It's time to shift from talk to action" Johnson added. Attendant services are community-based support services for people with disabilities, old and young, and include help with activities like: dressing, bathing, eating, toileting and personal care. These community-based attendant services allow people with disabilities to live at home instead of being forced into nursing homes and other institutions.
ADAPT estimates that the cost of community-based services is about a quarter of the cost of institutional services.
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