New Horizons is a nonprofit newsletter published three times a year by and for ventilator users, their families and those that care for them. Articles and comments are welcome. New Horizons is not and has never been associated with any other newsletter, product, or company.
Growth, challenges and changes. As new Horizons celebrates our anniversary our membership has grown rapidly incorporating people from accross the country. Vent users as well as caregivers, their families and others have continued to give New Horizons their continued support. It is from this support that New Horizons can remain a viable newsletter and keep up with the increasing demands of a growing membership.
As vent users, we continue to be a growing segment of the disabled population. The focus of New Horizons will continue to be issues of quality of life, new technologies, independent living, right to live with dignity, self-employment , PCA programs and advocacy. Our fight to gain our rightful place in society has just began. We continue to press the states and push for home and commuinty based programs that will allow us to live independently in our own homes with 24 hour care. Many states still do not recognize the need for such care. Through education, commmunication, PCA programs and specialized housing, we can achieve our goal of living independently within the community as productive citizens.
Specially designed apartment complexes staffed with a combination of skilled nurses and medically trained aides are imperative to achieving complete independence. As vent users we must have all the freedoms, dignity, and rights other individuals experience in their daily lives. Choose and chart the course of your own lives, don't have it chosen for you!
As you can see, New Horizons has a brand new look. We hope you enjoy the easier to read format and the new design layout. With the formulation of NAVDA (Nevada Association of Ventilator Dependent Adults, in 1993 and the subsequent birth of New Horizons which followed, our organization will now be known as N.A.V.U.A. (National Association of Vent Users for Advocacy). Our new name reflects our growing membership as a national organization and fosters our efforts towards advocacy rights for vent users.
To those of you who are new members, I welcome you! As always we invite you to send in your articles , comments, questions and ideas.
Paula M. Howaniec
The positioning of the patient in a bed can't be emphasized enough as being extremely important, particularly when the patient is unable to move and reposition themselves. If the caregiver can't realize this, then they should imagine themselves being tied into a position that is not their normal position of preference. Then they should imagine a wrinkled sheet folded under them with no possible way they could move, wriggle, or reach to change it. Imagining oneself being in that condition, and being, there are two entirely different situations. Trying to be intuitively observant is difficult for caregivers new to the occupation. Often supposedly "experienced" people miss elements of postitioning that are vital to a person who cannot reposition themselves in bed.
To make certain the person is aligned in bed, it's merely a matter of standing at the foot of the bed and looking. A person's body should be near enough to the top so that when the upper portion of the bed is raised, the bed bends where the person does. Otherwise, the person's back can be strained when they sit up. For me, as with many others, it's even more important when eating to avoid a slouched position.
Many People have preference as to whether their legs are together, spread, or crossed. Some who spend a great deal of time in bed will need heel, elbow, or other protection to prevent discomfort and skin breakdown. Those that cannot reposition themselves may need to be turned frequently. I need to be turned about every two hours when sleeping, not only to prevent skin problems, but also to prevent fluids from pooling in my lungs. Also for me, this can play a minor role in aiding digestion.
The sheets, blankets, and other coverings in bed can be vitally important to people in various ways. For example, some find it very uncomfortable to have pressure from the covers on their toes. Or, don't assume that because you are very warm from working hard that your sedentary patient feels the same. Without muscles to move my extremeties, I'm often colder than anyone else in the same room.
When washing or performing othertasks for someone in bed, don't pull all covers off immediately, especially when starting to wash near their head. Personally I'm infuriated when caregivers whip all my covers off in the middle of the night, to reposition me.
Conversely, when covering a person for warmth, don't whip the covers over them, creating a chill breeze. This, I think is taught in many classes to prevent spreading germs, but is frequently quickly forgotten. I believe it's called "floating" the bed linen.
....And That's a View From my Chair!
Access is coming to a theater near you. United Artists Theater Circuit, Inc., one of the nation's largest theater chains, will make its more than 400 theaters nationwide that were built before January 1993 more accessible under an agreement reached with Justice Department and a group of disability rights advocates. Under the agreement, UA will modify these theaters by 2001. For information, call DOJ, (202) 616-2765.
The history of the Paralympics is available on CD ROM. The disk includes stats, bios, video clips, and live interviews. To order, call the New Mobility Bookstore at 800-543-4161.
Evan Kemp Associates has published a Guide to Catalogues and a Guide to Consumer Protection for people with disabilities. For ordering information call 800-386-5387.
The Mental and Physical Disability Law Reporter is being made available to people with disabilities at a substantial discount. The American Bar Association is offering the reporter for $120 per year. The ABA also has a Disability Law Support Center. Call them at 202-662-1570.
The National RehabilitationCenter has released their latest edition of the "Directory of National Information Sources on Disability." The guide includes information on over 700 organizations as well as 100 other resource directories and 42 databases. To order, call 800-346-2742.
New book on adapted technologies: Noted author, Joseph Lazzaro has written "Adapted Technologies for Learning and Work Environments" which describes selecting and installing adaptive hardware and software for personal computer access. To order, call 800-545-2433.
WEB SITES OF INTEREST
The breathing muscles are supplied by nerves that emerge from the spinal cord in various locations, from the cervical through the lumbar levels. "Even the abdominal muscles are involved in breathing," said Joshua O. Benditt, MD, Assistant Professor of Medicine, Pulmonary Division. Injury to the spinal cord at or above these levels therefore affects the ability to breathe. "The higher up the lesion is, the more serious the effect on the breathing system. In fact, you can almost predict from the injury level the degree of breathing function a patient will have," Benditt said. " What that means is that if you have a (complete) high-level cord lesion, C3 or above, you will be on a ventilator." A ventilator is a pumping device that takes over the role of the breathing muscles, delivering air to the lungs. "If your lesion is between C3 and C5, you may be on a ventilator, and if it is below C5, there's a good chance that you may get off a mechanical ventilator," Benditt said. In patients with incomplete injuries, predicting the eventual level of function is very difficult.
Types of Ventilators
There are two basic types of mechanical ventilators. Negative pressure ventilators, such as the well-known "iron lung", create a vacuum around the outside of the chest , causing the chest to expand and suck air into the lungs. Positive pressure ventilators, which have been available since the 1940's, work on the opposite principle , pushing air into the lungs. "Until maybe the last five to ten years, if you had a positive pressure ventilator, that meant you had a tracheostomy-a hole in the throat with a small plastic tube to which a ventilator can be attached," Benditt said. Now a small face mask can be used over the nose and/or mouth for positive pressure ventilation. Some ventilators use a cone-shaped device that is held over the nose with straps; others use a small mask that covers the lower part of the face. For patients who need breathing assistance only part of the time, such as non-invasive means offer a way to avoid the complications associated with tracheostomies. Another technique for overcoming paralysis of the breathing muscles involves the implantation of an electronic device in the chest to stimulate the phrenic nerve and send a regular signal to the diaphragm, causing it to contract and fill the lungs with air. Such devices are very expensive and therefore rarely used.
Any mechanical device can fail, but power outages and malfunction do not necessarily spell doom for full -time vent users. There is a backup breathing technique called glossopharyngeal breathing or "frog breathing", which involves forcing air into the lungs. "If they're off the ventilator, they can keep themselves breathing for many hours like that." said Benditt.
For more information a ventilatory support for SCI, contact Dr. Benditt by phone via MEDCON (543-5300 in Seattle, or 1-800-326-5300.
NEW HORIZONS STAFF
Copyright 1996 Paula M. Howaniec