Loss of tongue control

Weltschmerz

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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.
 

KarenNWendyn

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The problem with the tongue is loss of range of motion. This makes it impossible to swallow normally. I have this problem. My tongue just lies nearly motionless. Choking (for me) occurs when I get a tickle in the back of my throat. Since i don’t take anything by mouth, I think the tickle results from secretions or occasional debris from my teeth that I am unable to swallow or cough up. It sometimes triggers laryngospasm which is very scary. Aspiration is another concern for anyone who can’t swallow or cough normally. I have never experienced the tongue flopping back into the airway.

Since your wife is trached, you don’t have to worry about the tongue obstructing the airway, Suctioning through the trache would deal with the secretions. So I don’t think the tongue will pose any additional danger for her. But everyone is different. I’m also curious to read what others say.
 

affected

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Yes sadly having a trach and ventilator does not at all change the progression of ALS throughout the body.

Karen is spot on - the trach will prevent aspiration.
However if she experiences laryngospasms they will feel like she is choking, but she won't actually choke.
May I ask if she says she feels like she is choking or this is what you are worried about?
 

Weltschmerz

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Thanks for this. Well, recently my wife sometimes complains of feeling like she’s choking. We have been doing the cough assist without much produced, and aspiration/suction also doesn‘t produce much at times, despite this feeling. So it’s actually really helpful to know the feeling could conceivably be from the position of her tongue (at least in theory). Gives us something else that could possibly be a cause. I will be able to be more reassuring about how choking isn’t actually possible despite the feeling. Anyway, I knew the trach didn’t stop progression but - as ever in the last 18 months - I have been surprised at the speed of the deterioration of other muscles. Thanks.
 

affected

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Thanks for clarifying - the thing that truly helps the most is to remain calm when that feeling of choking begins. I was amazed at how, even with FTD, my husband worked out that he had to remain calm, tuck his chin, try to breathe through his nose and slowly.
The first 'choking' episodes we had were really big laryngospasms, and he had been having tiny ones from really early. At first they were so tiny he hardly noticed them, but I noticed and he would shrug them off.

That is why I was asking if your wife actually feels it, or you were just concerned. I actually found these episodes even more distressing than my husband seemed to. I think it was because it's kind of harder to watch helplessly, I'm sure you know what I mean.

I would like to say that if a laryngospasm really persists and the person panics, they can actually pass out, and that will cause the larynx to stop spasming. This never happened to my husband, but the point I guess is that while it can feel scary, it isn't the same as choking on something obstructing the airway.

Another cause of that 'feeling of choking' can be food, fluids or saliva pooling in the throat in the pharyngeal pouch. This causes a feeling of choking, and with a weak cough ability really feels awful because you or I would give a good cough and clear it. Again, with the trach in place, it won't cause aspiration, but could be a little scary to feel.

I hope this all helps you work through these things. Sorry sometimes I have to ask for more detail to be sure I'm answering what is really being asked.
 

Weltschmerz

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No, no problem at all to clarify. We are in Belgium and medical staff speak English as a foreign language: they all say aspirate when they mean suction, so I’ve just figured that one out from the forum! Because my wife is having these choking feelings with absolutely no muscle movement left, it’s hard to be able to suggest any alterations or changes. One of her eyes is becoming a bit “lazier” than the other, but those are really the only things left that she can truly control. To my mind that would also be scary and exacerbate any feelings of choking. Anyway, thanks again.
 

Innovative

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I recently discovered that my considerable secretions (for 2 months) were caused by taking vitamin C. When I stopped taking vitamin C, the secretions stopped and have not reoccurred.
 
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