Ventilator-Assisted Living©

Fall 1990, Vol. 4, No. 2

(continued)

SCI Quads May Need Night Ventilation

John Quigley, Jr., D. Min, Saint Louis, Missouri

I was paralyzed 26 years ago as the result of a diving accident, and now as a forty-something C5-6 quad have partial use of my arms and wrists (no hands), but drive a van and lead a very active lifestyle.

I noticed sleep problems in 1985. I first attributed the gradual loss of stamina and energy and a general slowness in thought processes during the working day to normal aging. When I reported these signs to my internist he ordered a sleep study, which showed 12 episodes of sleep apnea per hour lasting from 20-55 seconds each. He suggested a tracheostomy, but thought this treatment too severe for my condition, and I agreed.

I had heard about CPAP (continuous positive airway pressure) through the GINI conferences, but always had related it to polio. It suddenly dawned on me as I sat in on the 1989 GINI conference that CPAP might help me. Saint. Louis pulmonologist Dr. Oscar Schwartz agreed. An in-home trial of CPAP confirmed its value. I rented a Thermodyne CPAP 7000 with standard nose mask and head straps and have been using it during the night for the last eight months.

My sleep is markedly better with no apneic episodes. There was an immediate return of stamina and energy after a full night's use. I now dream at night, which I had not done for years, indicating a deeper sleep than I had been getting before.

It was, and is, somewhat difficult to adapt to nighttime ventilation. It took three weeks to sleep a full night with the mask on. The major problem for me was claustrophobia. Another problem was learning to sleep with my mouth closed. After I learned this, the sensation that my mouth and nose were a wind tunnel was eliminated. A third problem, which remains, is the cold temperature of room air at night being pumped into my head and chilling me. I feel older than my body actually is because I sense my head temperature acutely, but, of course, cannot sense the temperature of the rest of my body under the bedcovers. I placed a space heater in the vicinity to warm the ambient air, however, I understand that CPAP units with temperature and humidity regulators are being designed. The last problem is that the mask irritates one side of my nose which I am now treating with hydrocortisone cream. Interpersonally, a ventilator adversely affects one's sense of comfortable intimacy with one's mate in bed, but it is a manageable, yet frustrating, side effect.

I would strongly recommend that other SCI quads experiencing daytime drowsiness, energy loss, and/or morning "battle fatigue" have their sleep evaluated. Sleep apnea is a more common problem for those of us with limited or nonexistent respiratory musculature than we might expect. It is easy to overlook this problem when we do not seem to have any significant breathing problems during the day; we assume that we also do not have any problem breathing at night.

I would also advise a person to stick with CPAP during the initial adjustment period. Like everything else in life, we can and will adapt. It will be worth it in the long run. I now sleep soundly and without interruption throughout the night and awake refreshed.

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