Bulbar onset diagnosis, August 2014

[Eileen2014]

My father in law was diagnosed with bulbar onset ALS in August of 2014. His first symptom was slurred speech, until the past 6 weeks he wasn't too bad. Now, absolutely to voice, completely limp left arm, chokes on anything and everything with a limited ability to cough, can't keep his mouth shut, limited movement with his right arm/hand, I'm sure there's a ton more stuff.

Will he eventually plateau or will he keep going downhill fast? He doesn't want to use the cough assist machine, he is a chain smoker with unfiltered cigarettes, as much as we want him to quit, we don't expect him to. It's one of the only things he can still control.

He told us he doesn't think he will make it to the summer. We think he will refuse a feeding tube. He won't move in with us (6 hours away) so we can help him. He's alone 85% of the time.

We are at a loss on what to do, but also don't want to be selfish and prolong suffering by talking him into using the cough assist, feeding tube, etc.

 

[KimT]

I'm so sorry you are involved in this and sorry your father is isolating himself. Perhaps he doesn't want to prolong his suffering. The only thing I can suggest is visiting him and opening a dialog that will reveal his wishes.

There is no way to predict how long he will live or if progression will accelerate or plateau. It does seem like smoking will only speed things up as it will affect his lungs aside from the ALS.

I'm really sorry. It must be hard.

 

[affected]

So sorry Eileen, it's as hard as it gets.

The smoking won't make that much difference - unless he has any lung disease on top. My Chris astounded the doctors with how clear his lungs sounded even though he was a smoker. It was the aspiration pneumonias, not the cigs that did him in.

Many PALS elect no supports like peg or bpap. I think they help make life more comfortable, even if you aren't trying to prolong. But it is his choice in the end.

I know the awful feeling of wishing they would make other choices, I always elected to allow Chris to make what I saw as poor choices because he had so little control. I know how much it wrung my heart around!