New Horizons is a nonprofit newsletter published twice 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.
Celebrate! As we enter into our fourth year of publishing New Horizons, let us reflect back and recall the progress we have made. Originally intended as a local newsletter, New Horizons has grown rapidly in popularity and now encompasses members from across the United States. Disabled adults are coming together in the community and speaking out loud and clear for more available home and community based programs. Organizations like ADAPT (Americans for Attendant Programs Today) have made a forceful impact on the states to provide us with home care services of previously used monies for institutional care. As vent dependent individuals we are all vunerable pawns to accept "placement" in a nursing home vs. home services because we are not "cost effective." In truth, the states could save monies through providing nation wide attendant care services. It has been estimated that the cost to keep one vent dependent user in a nursing home can be used to keep three vent users at home with attendants. Assisted living facilities have grown in popularity in recent years and will accept seniors and disabled adults as residents. I urge every disabled individual to write their congessman in support bill HR 2020 Mi Casa, Community Attendant Services Act. This bill is vital so that ALL disabled persons can live freely in their own homes. Life.. Not existance.
There will be changes made next year for New Horizons. Due to increasing demands on my health and schedule, New Horizons will be published in the Spring and Fall only. As always the purpose of New Horizons is not only to educate and inform, but to share ideas, foster communications and push for advocacy rights. Those of you who have subscription payments due will find a red mark on the front of this issue. Dues are $5.00 per year for vent users and $15.00 per year for others for a printed copy.
You can also view issues on the internet by going to the following site: http://www.eskimo.com/~jlubin. Click on the vent users support page. Lots of good and helpful information.
Mark O'Brien is 47 years old. He is a quadriplegic due to polio that attacked his nervous system 41 years ago. 23 hours a day O'Brien is in his 640-pound iron lung that forces air into his lungs. O'Brien types his work on a laptop computer with a foot-long stick held between his teeth. "Being disabled is horrible,"he says. "Monstrous. But it is still being alive, and there are possibilities."
In April O'Brien won an Academy Award for Best Documentary Short Subject for a film about his triumphs and struggles. A feature film based on his life is in deveolpment at Oliver Stones's Illision Entertainment.
Mark uses his tongue to answer a specially rigged telephone, five attendants, who come in shifts to his one-bedroom apartment in Berkeley, Calif., help Mark with cleaning, feeding and other daily tasks. Occasionally Mark is able to leave his apartment and go to a ball game or poetry reading-he can spend up to three hours a month outside his iron lung, one of only 150 still in use. Mark uses a ventilator for his outings with a mouthpiece to take in air. He also uses a specially designed gurney.
Mark was one of four children. His parents provided him with 24 hour care determined not to put him in a nursing home. "He would have never lived this long," says Walter O'Brien Mark's father. After the family moved to California, Mark was enrolled at the University of California at Berkeley in a special disabled students program. There he earned his degree in English in 1982. Says Mark, "We can make our dreams come true."
Way to go Mirage!
Valley Van Works in Las Vegas, Nevada has wheelchair accessible van rentals. Call 1-800-ASK-VANS.
ORGANIZATIONS Empower! The managed Care Patient Advocate. www.comed.com/empower. Not geared to chronic disorders, but a helpful Web site for people insured by managed care. Consortium for Citizens With Disabilities Health Task Force, (202) 898-0414; www.aamr.org. Publishes "Principles for Managed Care for People with Disabilities."
PUBLCATIONS "A Guide to Managed Care for People with Spinal Cord Injury or Disease," a pamphlet with much information applicable to neuromuscular disease. Available free from Paralyzed Veterans of America, (888) 860-7244; www.pva.org
ASSISTED LIVING Teton House, Rexburg, Idaho. For seniors and disabled adults. 24 trained nursing staff, housekeeping, private apartments. Pets okay.
Wheelchair positioning, including simple comfort, in my observational experience, has been neglected far too long, and only now is starting to be recognized. Of course, the positioning must begin with proper fit of the chair from the very start. Just any wheelchair is not satisfactory. Since it is a replacement for feet, it should fit as well as a pair of shoes.
Oddly enough, not much attention was paid to physical attractiveness of a wheelchair either, until a few years ago. Wheelchair manufactures, therapists, and physicians tended to look at wheelchairs as medical devices that had to be functional, but not necessarily attractive. Then, active wheelchair users got into the act. Today, wheelchairs come in a variety of styles and colors, and there is no reason to settle for something that the user doesn't find attractive.
For many users the positioning device in which they are seated creates their primary enviorment. This enviorment contributes to the person's self-concept. It needs to represent an image of wellness and independence while supporting weakened mususculature. Proper positioning can provide uniform pressure distribution, with a potential decrese in the incidence of pressure sores. The really interesting phenomenon is that as manufactures create a wider range of size, fit, position support options, and even shock absorbing devices for the entire chair, the health care financing programs, such as Medicare and Medicaid, are creating more hoops that interfere with providing the options. Even insurance plans aren't willing to provide all the necessary pre-planning options necessary for some progressive disabling conditions. It remains a "you bet your life" proposition, where their actuality tables tell them to bet that the user won't last long enough to need the additional options. I think the major reasons for these growing funding restrictions, come from first and formost , a whole history of completency about the real needs for adequate fit by nursing homes and local suppliers of equipment. The second major cause, is the price gouging and downright cheating on charges for service never performed. Then these practices were accepted by all out of fear of reprisal. With this history, the prices and profit expectations are driven high, to match the rest of the economy which is out of control.
Back on the prime topic again, there are some simple points about wheelchair positioning, most relating back to the design of the product itself. Most general purchase wheelchairs come with a sling seat and back of some type of fabric. Tight when new, all these back and seats eventually stretch out due to wear. It's important that the height of the seat be right for the user's lower legs. The lenght from seat to foot bottom can make a difference in sitting comfort. If one's knees are up to high , pressure is on the tailbone area. If the knees have pressure under them from the feet being too low, the result is pressure under the lower thighs and possible cut off of circulation to the feet.
I so often see people in their chairs where their head isn't well supported, with their head and body askew in the chair. Granted, my full head control is restrictive, as are my side (lateral supports) supports, but they are necessary to keep me in position to operate the controls. For others, it's a matter of being accustomed to both their condition and the positioning necessary to live as they wish.
....And That's a View From My Chair!
New research is demonstrating just how critical it really is. Inadequate humidification has been shown to cause thickened secretions, small airway occlusion, atelectasis, and impaired gas exchange. These problems can lead to additional complications, like pneumonia, down the road.
You can avoid complications in the first place by understanding precisely how humidity affects the respiratory system and knowing which type of humidification system you need.
Normally, room air is approximately 71.6 degrees F (22 degrees C), with a relative humidity of 50%-equivalent to a water content of 10mg H2O/L. For optimal gas exchange to occur in the lungs, the air must be 98.6 degress F (37 degrees C) with 100% humidity 44 mg H2O/L) by the time it reaches the bifurication of the trachea at the carina. This location is referred to as the isothermic saturation boundary.
When heat and humidity drop below 98.6 degrees F and 100%-otherwise known as core temperature and saturated-a series of changes take place in the airways and lungs.
First, mucus- normally 95% water-thickens as its water content evaporates in an attempt to counter the humidity deficit.
Next, the dense mucus makes it more difficult for the slow, wavelike motion of the cilia to move the mucus. That hinders the process of mucociliary clearance-the movement of mucus contaminants up and out of the lungs. As the mucus moves more slowly, the pulmonary system becomes less able to fend off infections.
Eventually the mucus becomes thick and inelastic, the cilia are immobilized , and mucociliary clearance stops altogether. This further reduces pulmonary defenses, and puts the vent users at even higher risk for infection.
A continuing humidity deficit leads to cell damage. The lack of moisture causes the cilia to break off from the cells in the airway, causing damage to the mucosal lining. The isothermic saturation boundary moves from its normal place near the bifurcation of the trachea further down into the lungs, resulting in more stress to the mucosal lining.
Finally, atelectasis occurs. Under normal conditions, the smaller airways continually secrete fluid, which is moved up and out by the cilia. But when the mucus in the more proximal airways gets "stuck" this fluid can't get out.
Continued in next issue
Taken from RN Magazine
NEW HORIZONS STAFF
Copyright 1997 Paula M. Howaniec