- Apr 14, 2019
Hello all, my wife had a trach in February and is still in hospital while we try to come up with a solution for discharge. Unfortunately despite the resolution of breathing issues with the trach, ALS has continued to progress rapidly. The physio pointed out to me the loss of muscle control in the forehead and lips. Now I am beginning to see a change in the tongue, which my wife herself can feel. A search on this site showed a lot of people thinking they have ALS because of tongue twitches. In our case my PALS has made it as far as complete loss of autonomy and several months of a trach before the tongue seems to be affected. But my concern is whether this might feel like choking or whether it could actually be dangerous somehow? Does anyone have any experience of this aspect of this horrible disease? Thanks.