Thursday, 4 December 2014

Choking And Coughing

These days I am pretty consistent around choking. At almost every meal there is a moment when I have to cough food back up, food that mistakes the turn in my throat and heads for my lungs instead of my stomach. These days it is very light weight things, sometimes a drop of water or a small bit of food. Eventually all swallowing will fail and I will be at the end of my "eating" road.

I've come to a bit of a decision around that; I've decided not to get a feeding tube. When I can't eat, I won't eat. That will be the end of that. My last day of dining will be the beginning of my end of days. For a while I will go on a liquid diet, but eventually even that will fail me. There will come a day when even my own saliva will cause me to choke.

Of course I say this now with some certainty. If I have learned anything from ALS, it is that this line in the sand I keep drawing is highly mobile. I am certain it will move, and move again, many times before I finally do hit the end of this illness. Nobody wants to die, not even me. Life is good, even when it is bad. Still, I know there will come a day when it will all be too much.

That's the other problem. I have a very high tolerance for "too much". I have spent my life finding solutions to the problems of daily existence. I've always been the one to figure stuff out, for myself, for my wife, for my children, for others. I am always looking for a way to solve a problem. Even yesterday I was asking the people who put the lift system in my truck about ways to change it so that it will be easier for me to get in and out. I said recently that when I could no longer get in the truck, I would quit driving. Yet here I am looking for ways to change the rules on "get in the truck".

It doesn't help my swallowing today that I have swollen glands in the top of my throat and roof of my mouth. I suspect I am fighting off some sort of virus, one of the millions that run rampant in enclosed spaces of winter life. I've had my flu shot so this is probably just the mild edge of something which will pass quickly. Nonetheless it adds another layer to the challenges of daily living.

I would like to say that "this too shall pass away". Alas, it will not. Certainly the swollen glands will un-swell. It is the problem with swallowing that will not pass; it will simply get worse. Oh well, it's not like I didn't know this would happen. But knowing doesn't make it any easier.


  1. Richard, I have a tracheostomy and a feeding tube and life is still good. Please read Diane Huberty's blog about them at and

  2. 18 months later, how do you feel about a feeding tube, Richard?

  3. I've changed the way I eat, and am doing better, although I still bite my lip and tongue on a consistent basis. No feeding tube yet, still don't want one.