I had heard rumors that a cough assist device may be difficult to get, but the battle lines were even farther back than I had anticipated: when I mentioned to the doctor in April 2014 that I am having difficulties getting my lungs cleared and that a cough assist device might be useful in preventing pneumonia, the name of the game became obvious when the doctor replied:
"There is no such device!"
It took another few months to get to the point "it only vibrates the lungs but doesn't get anything out" and finally, after a year, to "it may bring up such large chunks of phlegm that they may block your airways". After 18 months we were at "it is better that the patient dies of the disease than of the treatment", and (to my wife) "are you aware that by using the device, you may cause the death of your husband?"
We did score enough points in the cough machine jeopardy to qualify, and in October 2015, when I already was dependent on the BPAP for most of the time (I could still breathe to a degree but panicked after a few minutes), I was told that I have been prescribed a cough assist device. Me, my wife, and my personal assistant were invited to the hospital for the importer's demonstration. They still tried to press me about my bulbar symptoms (throat paralysis), which was according to them a preventive condition concerning the device. I had anticipated that and gave them a few articles I had printed from a medical journal obtained via a friend who works in a university. Always be prepared.
The drill was simple enough. Sit as upright as you can, remove the BPAP mask, press the handheld coughing mask against your face and inhale to start the insufflation-exsufflation cycle. Except that I had no hands. And could not inhale powerfully enough. So the machine had to be set to constant cycling mode, and my wife or assistant had to press the mask against my face at exactly the right time. And so that there are no air leaks.
"A bit lower... no, press more against the chin and less against the nose.. a bit more... too much."
"I will shave you."
Have I told you yet how fun it is to be shaved when you need the mask for breathing?
After two days' practicing with nurses who had experience with the cough assist device (the same device I was told doesn't exist), we were ready to go home and start practicing for real. Three sessions a day, each session consisting of four six-cycle series. It was difficult. We seldom managed to get the mask airtight. Each session took close to an hour and typically ended in an argument. With a three-year-old at home demanding attention, and me wanting a different kind of quality time when my wife could spare some, the device gradually went to disuse...
