Monday, 24 February 2014

Failure To Breathe

Another of the PALS in know online passed away yesterday. It was sudden, very sudden. The PALS was online in the morning, chatting and posting on Facebook, then, gone. The next day we got a post that death had come from a "breathing failure".

There are lots of breathing related issues for PALS; most of us ultimately die from breathing related issues. These issues include things like laryngospasm, an uncontrolled/involuntary muscular contraction (spasm) of the laryngeal cords; diaphragm spasm or failure, where your diaphragm and chest wall muscles simply no longer have the strength to expand your lungs; or, choking on phlegm or choking on food. Any one of these can bring a very sudden death, an unexpected death. All of them are ALS related.

I have had minor versions of all of these, and one incident which I would call significant. I've awoken in the middle of the night with throat spasms. Fortunately I was able to calm myself, and once calm the muscles in my throat once again began to function normally. Had I panicked the spasms would have likely gotten worse, impacting my breathing to the point where I would have passed out. Once out, my body would have relaxed and I would have begun breathing normally again. At least that's the theory; with ALS it doesn't always work that way.

The loss of diaphragm seems to be a ways off for me. Right now my breathing capacity seems to be holding fairly steady at around 85% of normal. It has been that way for several months, after an initial decline when all of this started. If I follow the "normal" pattern for people with my kind of ALS, my diaphragm will likely be the last thing to go, and loss of breathing ability is what will end my life. With any luck I will simply go to sleep one night and, while sleeping, stop breathing.

It's the choking thing that really scares me. This is the kind of things that can happen suddenly. It can happen and you can be completely aware of what is happening. I know; it happened to me the other day. I was on my way home from doing some errands and thought I would treat myself to an A&W Mozza Burger. I know they are bad for me, but at this point I don't think they will be the cause of my demise, or at least I didn't think so at that moment.

I bit into the burger and started to chew. Suddenly a piece went down the wrong way. This happens to me more and more as time goes by; I have to be careful when I eat these days. The piece that went down the wrong way lodged in my windpipe in just the right spot, and was just the right size so that I couldn't breath. I started coughing madly, as strongly as I could, but it just wouldn't budge. After a few moments, minutes that seemed eternal, minutes where I could feel myself getting light headed, where I could feel the panic setting in, that piece budged and moved its way up. More coughing, more movement, more air.

Panic subsided. I could breath and eat again. I took a few minutes to recover, then I finished my food. My throat was rough for about an hour and I was once again reminded of how quickly this disease could finish me if it wanted. If my diaphragm and lungs were not strong enough to push out that piece of burger, I would have been done right there, suddenly and without warning. That's how it happens.


  1. Oh dear thank God you were able to dislodge it. I fear the early demise. I want you around for some time to come. You are my dear son and good friend. love Mom

  2. Hi Richard,
    Are you aware of the diaphragmatic pacing system. It can really be helpful to keep the diaphram working

  3. I am aware of DPS. Not needed at present. When I do need it, there will be other considerations, such as Quality of Life and Prognosis.