Bulbar?

[Bestfriends14]

I feel like this is a bit of a CIHALS question so I apologise in advance. We went to the clinic on the 22nd and, to our surprise, we learned that Wayne's SVC had not changed in a year. However, because this disease is cruel and wants those living with it to be sapped of all joy, the pulmonologist said Wayne sounded like he had "one drink too many". Now, I have noticed Wayne slightly slurs his words when he is not fully supported by his trilogy and when he is, his slurring stops. He has also said that at night in the past 6 months, he has awoken about 4 times from biting his cheek. So, at the clinic when he was seen by the SLP and she did a manual manipulation with his throat, cheeks, tongue and got him to swallow water and an arrowroot cookie, she saw nothing amiss. Wayne is now set to have a barium swallow test on the 7th to ascertain if anything is truly going on.

So, my questions are: Are bariums like EMGs in which they can spot muscular issues that cannot be detected upon clinical examination? Also, has any CALS noticed their PALS slur when not fully supported by their trilogy machine. I ask CALS because my husband cannot hear himself slurring.

Thanks in advance everyone

 

[Nikki J]

Well you can have speech affected before swallow. I met a woman who was completely unable to speak but able to eat and drink fine. I also know people with severe speech impairment who are still eating and drinking fine

not what you were asking about trilogy but my sister‘s speech was noticeably worse when tired at all stages

I am sorry.

 

[lisa g]

I just had a barium swallow test to make sure that I wasn't aspirating into my lungs. It definitely saw that the muscles in my throat were alittle weak. My speech is affected but I can still converse. As far as the trilogy I only use it at night but find when I'm tired my speech is always alittle worse.

 

[Bestfriends14]

Thank you to Nikki and Lisa. My husband has aspirated on water 3 times in the last several months. The solution he used to clear the water out was to recruit through his sip and puff. It helped him get enough strength to cough it up. Doing that, however, does make me nervous as this could push any blockage further into his lungs, I think. At the clinic, though, they encouraged recruitment for this type of chocking. Not sure if others have done the same in these situations.

 

[rmt]

My husband's speech and swallowing were always worse when he was tired. At the beginning, he sounded normal in the morning and slurry by the end of the day. He isn't on bipap, so I don't know how that would have affected things but I assume it would be like being tired.

He could still swallow for a year after his speech was totally gone. I don't think his barium swallow tests showed anything we didn't already know was weak. They were more of a confirmation of what we already knew weren't working right.