Trach issues

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lgelb

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Unfortunately, there are documented cases where communication fails, Jonico. In some cases, it is down to overall physical weakness, e.g. after pneumonia, and in others, eye control is lost at the muscle level. Sometimes the eyes cannot even close without tape. I am not trying to scare anyone; these are rarer cases, but everyone should have a contingency in place.
 
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Weltschmerz

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We have had frank conversations but in the midst of it being a real-life issue, it’s hard to consider with any sort of clarity.

Jonico, thanks for your reflections; you seem to have been in one of the most similar situations to ours, so it’s helpful. My wife is in her early 40s and I’m younger, so this has thrown us for a loop and hence the possible attraction of a trach. Unfortunately so many things have gone so quickly that I can well imagine the eyes following that pattern. For example, until Christmas (2019) there were few speaking and swallowing issues but within a week of issues arising, this hospitalisation was brought on. Eye movement issues and FTD have been identified as possible risks and they weigh heavily on me at the moment.

Lgelb thanks also for your very asute and helpful comments, which gave a difficult conversation some focus and parameters to work with.
 

jonico

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It's really hard to read your posts. I feel your pain too much. I always hesitate to post. Don't want to encourage. Don't want to discourage. Truth is, it's really a huge grind...but there has also been beauty in it. I've hit a wall and want it to be over now. She wants to live longer, which I admire greatly and understand. Sometimes I am jealous of others whose PALS passed earlier (with no trach my wife would have passed 3 years ago) but I press on, and am convinced that when all this is over I will look back very favorably on the extra time we shared together.

I'm out. I know you will and your wife will make the best decision for both of you. All the best...Jonico
 

jonico

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Hi Weltschmerz,

I hope I didn't discourage you from posting with my last post. This is just a quick note to let you know I have been thinking about you and your wife and I would love to hear how you are both doing. Hopefully well, all things considered! All the best...
 

Weltschmerz

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Hi, jonico and others who’ve helped. In the end my wife opted for the trach. So far, so good: she’s been in decent spirits helped in part by the pressure of the immediate decision having been lifted. Plenty of unknowns now and in future but for now, some calm.
 

Weltschmerz

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Just a quick update to say my PALS is still in hospital, several months later, though that is due to all sorts of factors (not all ALS-related). The trach itself seems fine. I can easily aspirate and otherwise it has all gone ok. This past week I noticed my PALS has had difficulty with her lips, so I asked and she cannot now open her mouth properly. I hadn’t thought of that as a possible deterioration. Many of the experienced nurses have gone to Covid-19 units so we are still training people on all manner of ALS issues!
 

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stay safe there in hospital, sorry it has taken so long
 
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