Ventilator-Assisted Living©

Fall 1992, Vol. 6, No. 2

ISSN 1066-534X

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Read selected articles from this issue ...

Rebel with a Cause
Randy Haims, LaMesa, California

Congenital Central Hypoventilation Syndrome: A Family Profile
Nancy Stone, Indianapolis, Indiana

Respirator Use in Denmark
Bente Madsen, Frederiksberg, Denmark

Ventilator Adaptations
Mary Miller, Collinsville, Oklahoma

Dental Visits
Jack Genskow, PhD, Illinois

From the Brink
Maggie Tyson

Travel & Ventilators: Florida or Bust!
Lewis Gumerman, MD, Pittsburgh, Pennsylvania

Ventilator User Settles Airline Suit

IVUN Bibliography

Letter to the Editor: MDA Telethon

Ventilators: Alternatives for Long-Term and Home Use

California Budget Hurts Ventilator Users

Rebel with a Cause

Randy Haims, LaMesa, California

I was born in Cleveland, Ohio, in the late '50s, the second boy of three children. My brother was only 13 months older, and when we were old enough to compete in sports, he was Joe Athlete and I wasn't, so I became a competitor. By the time I was 14 or so, I became the athlete, the teacher, and the big brother.

While in high school I received numerous awards, medals, and trophies for wrestling, and at the end of my senior year I received an athletic (wrestling) scholarship to attend California State University at Northridge, but two months into my first semester I quit because I was not academically prepared. About a year after I dropped out, I ran into my wrestling coach who helped reinstate my scholarship and get me back in school.

On a rainy night one October, on a long drive home from Disneyland with my brother and friends, the driver fell asleep at the wheel. We coasted into an intersection and were broadsided by a three-quarter ton truck. I was lucky that time; no CNS involvement but a ruptured liver and multiple head injuries. I recovered very quickly and was coaching gymnastics, wrestling, working in construction, and training for the upcoming wrestling season.

On April 29,1980, while coaching gymnastics, I crashed while performing a one and three-quarter front flip on a mini-trampoline. My head buried into the landing mat, my neck snapped and cracked in every conceivable way possible, and I knew I had broken my neck and was paralyzed. I was all too aware, extremely angry with myself, and more than a little scared of what had happened. I finally ended up at a trauma center, after about four hours of senseless detours, and told I had a severely subluxed C5 vertebra. I was put in Crutchfield tongs under observation, but after 36 hours, I was a code blue. I was in surgery for nine hours, and then my family was told I would probably be a vegetable for the rest of my life.

Imprisoned in the ICU for two months (I think the doctors were waiting for me to die), I lost 60 pounds, more than one-third of my body weight. I guess I harassed them enough and showed them that my instinct for survival was beyond them, because they finally released me to the rehab floor. I was in rehab for nine months and when my doctors would not give me a discharge date, I came home on a weekend pass and never went back.

Now I am paralyzed from the shoulders down and use a PLV-100 ventilator (one on my wheelchair and one at bedside). You might say I was lucky that my accident happened on the job, because workers' compensation has paid for the ventilators and 24-hour attendant care. I have about an hour's free breathing time without a ventilator, and I know how to frogbreathe.

Currently, I am coaching wrestling and gymnastics, counseling peer groups and families of people with SCI injuries, and designing recreational equipment for high quads. I have built two custom-designed homes. I have lectured on a multitude of topics to various groups from elementary school children to doctoral-level college students.

In the past 12 years, I have had many accomplishments, not without disappointments. I believe each individual must set goals and reach for them, one at a time -- surrender is not part of my vocabulary.

Dentist Visits

Jack Genskow, PhD, Springfield, Illinois

What do you do when you need to see a dentist and you rely on glossopharyngeal breathing (frogbreathing) as an aid to respiration? It is impossible to frogbreathe with your mouth wide open and full of dental instruments, cotton packs, and suction tubes. Beyond this, what if you use positive pressure ventilation with a mouthpiece as your respiratory aid? Your mouth must be closed to use the mouthpiece.

In the past, when I was confronted with a visit to the dentist, I needed to supplement my "regular" breathing after a few minutes with periodic frogbreathing. Thus I had to keep interrupting the dental process by looking down and briefly frogbreathing. But my "regular" breathing has diminished to some degree, and I was not sure how well my old method would work.

I tried another method that worked well for me and made the dental process much simpler. I replaced the mouthpiece on the ventilator hose with a pair of nasal pillows which fit into my nostrils and deliver positive pressure ventilation. This allows my mouth to stay open as long as necessary and it greatly speeds up the dental work. Both my dentist and I were pleased.

Nasal pillows can be obtained through respiratory therapists. The pillows must be held in place by a head harness with velcro straps. They may dry out the interior of the nose, but this is not a problem for short periods.

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