Wake-up Call from the American Sleep Apnea Association
Celebrating Our 22nd Year Fall 2012
ASAA A. W. A. K. E. NETWORK NEWS
Kristina St. Peter-Weaver, coordinator of the four-year-old Brevard A. W. A. K. E. Group in Cocoa, FL, made such an effective pitch for the A. W. A. K. E. system at the October meeting of the Florida Sleep Technologists Association in Jupiter, FL, that four new groups were formed in the following month: two in St. Petersburg, one in Jupiter, and one in Clearwater, FL.
St. Peter-Weaver has an overwhelming personal reason for wanting to see strong followup support like that provided in A. W. A. K. E. groups available for obstructive sleep apnea patients. Her father, then 53( and thin), was diagnosed with severe sleep apnea two years ago. Some heart arrhythmia was noted during his sleep study, she said.
Unfortunately he resisted PAP therapy. A year later he died in his sleep, felled by a major heart attack.
PAP therapy is difficult for some patients, but those who participate in A. W. A. K. E. groups report again and again that advice and support from others engaged in the same therapy strengthens them to persevere.
A. W. A. K. E.’ s educational character is the key, St. Peter-Weaver believes. One recent participant said to her,“ I’ ve been on PAP therapy for four years, and I learned more tonight that in that whole time,” she recalled.
Her group, which meets monthly, regularly draws 30 or more participants: a dozen or so regulars, another dozen or so who come occasionally, and almost always a few attending for the first time, she said
In her day job, St. Peter-Weaver, a registered polysomnographic technician, is neurodiagnostic supervisor at Parrish Health Care Sleep Disorders Center in Cocoa.
A. W. A. K. E.— Alert, Well, And Keeping Energetic
Letter from the Executive Director................ p. 2 Sleep Apnea may cause major depression... p. 3 Question Box................................................ p. 4
Sleep apnea begets its own inventors
Rutans and Rick Gordon ease life with PAP therapy
On their Washington visit, Bob and Debbie Rutan promote healthy sleep.
Most people who have a device they use frequently sooner or later come up with a gimmick that makes its use easier. Sometimes the gimmick is so useful it becomes marketable. Turns out that observation applies to PAP users also. Meet Debbie and Bob Rutan, inventors and marketers of RemZzzs mask liners, and Rick Gordon, the impresario of the eZe carry-on suitcase, which enables the user to roll a PAP machine, a laptop, and up to three days’ worth of clothes through the airport packed all in one bag.
The Rutans’ story begins with Debbie Rutan’ s struggle five years ago to find a PAP mask that was comfortable and didn’ t leave her facial skin inflamed and raw after a night of use. Her severe sleep apnea required a pressure setting sufficiently high that the only way she could avoid major air leaks was to tighten the mask to the point it was beginning cut into her skin. No model she could find provided a fit that solved the problem.
Sleeplessness for both Rutans followed, as they tell their story, to the point that one night in desperation Bob cut a circular ring of material out of one of his tee shirts. He hoped that a sort of liner might provide a better seal. Reluctantly Debbie gave it a try— and slept seven hours straight.
There have been subsequent refinements and improvements, but essentially that night RemZzzs CPAP mask liners were born. These days sleep apnea education and marketing the product that emerged from Bob’ s experiment have become a way of life for the Rutans. Their mask liners, disposable circlets of white cotton jersey, are a mass-produced product, available on line and from many durable medical equipment firms— and from the side of the Rutans’ bus.
They visited Washington recently, part of their year-long“ Dreams with Hope” tour of the United States in which they are traveling and living in a luxury bus converted into a rolling home and office. Bob drew their bus up outside the office building where the American Sleep Apnea Association has its
Inventors, continued on p. 2