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.
For those of you who have a computer and access to the Internet, we now have the Ventilator Users' Homepage on the German computer, ViKaR, and Mud Space titled, "Ventilator Users' Interactive Support Network." Back issues of New Horizons are also posted on the Web. Address: Disability Network Site.
As ventilator 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 begun. Through education, communication, PCA programs and specialized housing, we can achieve our goal of living independently within the community as productive citizens.
To those of you who are new members, I welcome you! Remember, this is YOUR newsletter, please feel free to send your suggestions, comments, articles, ideas and poems.
Medicare, Medicaid Cut to the Bone
House and Senate Pass Punitive Budget Resolutions
Republican leaders are moving quickly to enact a federal budget that turns back the clock, reducing the government's responsibility for the health and welfare of the public. By the end of May, the House and Senate had passed Budget Resolutions making devastating cuts in Medicaid and Medicare and a wide range of other human services programs. Both resolutions also assume radical changes in the way Medicaid is run. The Senate's Budget Resolution cuts Medicaid by $175 billion over the next seven years; the House by $187 billion. Similarly, the Senate cuts Medicare by $256 billion; the House by $288 billion.
Medicaid: Block Grant?
One of the most important issues to be decided by the Senate Finance and House Commerce committees is whether or not Medicaid will be transformed into a block grant, losing its entitlement status. Block granting would radically change the nature of Medicaid in two major ways:
Paula M. Howaniec
TID BITS... In our Spring 1994 issue of New Horizons is was reported that Puritan Bennett was no longer manufacturing or repairing their respiratory humidifiers. At that time, Fisher Paykal was working with Baxter to develop a larger water reservoir that would not dry out between refills as previous FP units did. This year Fisher Paykal is now offering a humidifier that is not only compact, but puts out considerably more humidity than previous FP units. The new MR410 respiratory humidifier is an efficient unit with an off and on switch, power on indicator light, and heater indicator light that blinks intermittently while maintaining a constant temperature. The heater control knob can be set to regulate temperatures from one to nine. This hot plate like unit holds a water reservoir that slides on and off the unit with a spring loaded rim that locks it in place. The plastic water container holds 280ml of water and has a metal plate that fits on the bottom of the reservoir which is easily removed for cleaning. Disposable water chambers are also available for temporary use and can be cleaned in the same manner as permanent chambers. For more information, contact your respiratory supplier.
There is a new radio talk show available for people with disabilities. The show is called 'On a Roll' and is hosted by Todd Kimball. The program is heard on 720 AM in Las Vegas, Nevada,and also in California, and Ohio. This most informative program delves into a mired of disability issues and concerns. Tune in on Sunday nights at 9pm. The FSH Society publishes a newsletter for persons with Facioscapulohumeral Muscular Dystrophy. The FSH Watch is available by writing to: Daniel Perez, FSH Society, 3 Westwood Road, Lexington, Massachusetts 02178
"Your newsletter is very informative to read and refer to. I intend being a subscriber as long as you publish it." Leland H. Baum Wisconsin "I read your newsletters twice and I am very much impressed with them. Those newsletters are what make my day. Your doing a wonderful job, keep it up." J.G. Ravenelle Massachusetts "Love New Horizons." Cathie Hanley California "I enjoy each and every issue of New Horizons. Thanks so much." Jeanne Campbell Rhode Island "We enjoy each issue of New Horizons and find them informative and helpful with our homecare practices." David N. Hornick, M.D. and Roberta N. Miller, M.D. New York "The name New Horizons is perfect because it alone is so positive. So many people need to realize there is a great deal of life after going with a ventilator! I enjoy reading New Horizons very much." Lee Swenson Minnesota "A good source of information." Dale Dulaney Nevada
On a January 2 note there was mention of Elavil for relaxing sleep and stopping leg cramps. I was given that briefly about 4 years after diagnoses, while still barely walking at home. I understand it to be an antidepressant. I spoke like I was dead drunk and it relaxed the remaining muscles so bad that I needed definite help to walk. I stopped it and although I wasn't as nearly drunken feeling, it seemed to have wasted my walking ability to the point of no recovery from this seemingly Elavil related setback.
Living here in the nursing home for 8 years, I've seen so many seniors given Elavil to "calm" them. But the result was invariably a "snowed" (their term) person, into a zombie like state from which they never return. Valium was what I went back to, using 5 to 10Mg. at night both to sleep and stop me from stretching my legs which has caused the screaming Charlie horse type of cramps. Then an occasional 5 Mg in the daytime kept me relaxed but not stoned, nor in pain. I know I've become addicted to Valium over the years, but at the time of my heavy usage at home I saw no harm, as I was just waiting to die. Now my attitude has changed completely, to one of determination to accept my current condition as something that won't get better. But I will make the best of assistive technology to live a full and long life. Accordingly, I've cut back on my Valium to 2.5Mg. at night before sleep. I tried to drop completely but experienced withdrawals. With coronary artery disease also, my internal medicine Doc has no objection to this.
A friend, Billy Golfus, who happens to be both brain damaged and hemoplegic, was speaking at a prison a few months ago. One man there asked Billy when he was going to get better. Billy said, "I see you're black. When are you going to get better?" Question answered!
Over the years, I've taken no special vitamins or drugs to reverse or change the course of ALS. Only drugs to control the spasms, i.e. Valium or various drugs to control the saliva or phlegm. Neurotin is the first drug to try to change it's progress.
As noted above, I've been stuck in this nursing home for 8 years and have been using ventilators for over 4 though I've had a tracheostomy since shortly after I came here. I'm fully quadriplegic, eat only blended food but operate a power wheelchair with a sip and puff control. I'm very fortunate among those with ALS and ventilators, in that I can still speak. My speech quality is deteriorating but it's been doing so for over 2 years. I operate my computer with a lipswitch both in my chair and in bed, using Scanning WSKE II by Words+, Inc. I'm now 55 and my next goal is the turn of the century, which'll mean 4 times the average life expectancy of someone with ALS. From there on, I'll just keep up with scientist Stephen Hawking who has positively continued to live his life despite being diagnosed with ALS more then 30 years ago.
Is it a bird? Is it a plane? No, it's Superman. Familiar words to most of us who grew up watching our hero Superman on TV. The news earlier this year that Christopher Reeve (Superman himself) had fallen off his horse and suffered a cervical neck injury, stirred many old feelings for me concerning life and disability issues. Granted, Mr. Reeve's life has been dramatically changed. He now breathes with the aid of a ventilator and is paralyzed from the neck down. A recent story in a nationally known newspaper depicted Mr. Reeve's condition as being "delicate" and that a crash cart was being kept close at hand in case of heart failure. Such images of a newly disabled person being portrayed as a "helpless" individual by the media, greatly enhances the idea to the public that disabilities are something to be pitied. Nurses were reported as leaving Mr. Reeve's room and crying uncontrollably because of his lifeless body. Prayers were also being said to "fix" Mr. Reeve's broken body. The media in this country as well as the public, are fixated on full recovery. We all can't be like former football player Dennis Bryd, who also injured his spine, but has since healed and is now walking. Many of us who are severely disabled have diseases such as Muscular Dystrophy, Cerebral Palsy, Spina Bifida, Spinal Muscular Atrophy, ALS, and many other maladies that render us quadriplegic and vent dependent. We can't be "fixed" nor do we want to be prayed over and healed. I don't live my life in that manner and I don't believe the majority of the disabled population does either. We are much too busy living our lives positively despite our limitations.
I am reminded of a couple of incidences that happened to me in the past that reek of what I call the "pity party syndrome." I was leaving my van and was about to go across the street, when I was approached by a dirty looking elderly man on a bike. He touched my arm and said, "What's wrong with you?" I didn't answer him and continued on my way. The neighborhood was not a desirable area to be in and I was extremely wary of what this stranger might do. He continued to follow me and my friend across the street and then asked to borrow a pencil and paper. We told him we didn't have any and quickly hurried our pace. The old man lingered for awhile, and then shouted, "I will pray to the Lord and he will heal you of this awful condition." My friend and I looked at each other and were happy that we were now indoors.
On another occasion, I was going into an elevator at a local mall. A lady followed my friend and I into the elevator. After starring in disbelief at my wheelchair, my vent and my trache, this lady piped up and turned to my friend and said, "Why is she in that wheelchair? Can't she walk? I see she has one of them there breathing machines." "Yes", my friend replied, "she does, but she CAN talk for herself, why don't you ask her?" Silenced filled the elevator. "Sure". I said. "What else do you want to know?" The lady suddenly became dumfounded and wide eyed. The elevator door opened and she quickly scurried out.
A recent NBC news report profiled a man who tracks down terrorists on his computer. The report showed the man operating his electric wheelchair and rolling up to his computer to do his work. The reporter narrating the story expounded upon that fact that what made this man unique was the fact that he has continued to do the same type of work despite being diagnosed with ALS two years ago. "He is a man who is dying", said the reporter, "but has shown much courage in the face of adversity." It irks me to hear such mindless reporting. This man is not DYING, he is LIVING with ALS positively. Our biggest "handicap" in society is attitudinal barriers. No pity parties please, just equality and acceptance for everyone.
The stoma saver is one of these products. It is a small pillow that fits under the ventilator circuit to relieve vibrations around the circuit. The stoma saver reduces fluid in the lungs and decreases the chance for infections in or around the stoma or in the trachea. It also holds the circuit in a straight line and prevents jiggling and movement of the trache which can cause irritation.
For more information on the stoma saver, write to:
Look for our feature story about Elaine Abel in the winter 1996 issue of New Horizons.
In our Spring 1995 issue of New Horizons I included information on custom-built apartment complexes for vent users. One of the projects mentioned was the Creekview 202 apartments in Vancouver, Canada. I received many requests for more information on the Creekview complexes. For more information on the Creekview project, contact the Canadian Paraplegic Association, telephone-416-422-5644.
New Horizons Fall 1995