I am grateful for my ventilators because they let me be mobile and participate in life. Without a ventilator I would die. But it does come with complications which are the motivating factor for my invention of the conformal vest ventilator.
A common expression is that necessity is the mother of invention. It is also true that personal needs and vanity can be the mother of invention. I don’t like the way I look when I have to use the positive pressure ventilators I have now. There’s always something sticking in my face. It interferes with speech and eating, and it makes kissing completely impossible. As you can imagine, it interferes with the entire range of intimate activities.
I breathe with several different devices during the day, and I use a face mask that covers both my nose and my mouth at night.
Sometimes during the day I am on the nasal pillow, which I drive with a cough assist machine rather than my Phillips Respironics Trilogy 100 ventilator. I do that because I am able to program that machine so that I have a mild vacuum during the exhalation cycle and that makes the “n” as in Nancy sound more natural.
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Whenever I am on the nasal pillow whether it is driven by the Trilogy 100 or by the cough assist machine, I must breathe in when the cycle says I breathe in and I can only talk during the exhalation cycle; this interferes with the natural cadence of speech. For this reason I prefer the air sipper during the day when I’m trying to talk to people. The air sipper senses when I interfere with a slight flow of air out the end of the sipper tube, and gives me a controlled volume of air when I request a breath with my lips.
I am blessed among ALS patients because I am able to speak and also to trigger the air sipper with my lips.
Many ALS patients are so thoroughly paralyzed as to not be able to move their head and lips to initiate inhalation with the air sipper. I am very glad that I retained adequate muscle control to be able to do that.
I will be able to also discreetly trigger the inhalation cycle for my conformal vest ventilator so as to control my breathing cycle.
I will design the device to default back to automatic operation in case of not receiving input from me for some period of time. It’s actually quite similar to the way you breathe naturally while speaking. During a long pause you return to automatic control but while you are speaking you consciously decide when to end your sentence.