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canmark

Distinguished member
Joined
Jul 19, 2013
Messages
111
Reason
PALS
Diagnosis
07/2013
Country
CA
State
Ontario
City
Toronto
I’ve recently noticed some issues with my speech, and I’m wondering if anyone has experienced similar. My ALS progression has been pretty much exclusively LMN. That is, my body is weak and limp. I’m not able to walk, dress, bathe or feed myself. However, I am able to eat and speak normally. What I’ve noticed recently is that when I speak for long periods of time I will often have an (unintentional) pause at the end of a sentence or sometimes even in the middle of a sentence. There is no slurring (that I can detect) but it’s making my speech a bit choppy. I’m wondering if these pauses are because my breathing is weak and I’m stopping for breath. (Note: I am NOT on a BiPAP.)

I’ve had a nurse asked me if I’ve ever been out of breath and I’ve said no, because I interpreted out of breath to mean gasping for breath due to strenuous activity. But perhaps the choppy speech pattern could be a sign of being out of breath.

Has anyone experienced this? Does this sound more like a breath issue, or is it a possible bulbar issue?
 
I would ask to have breathing checked as a first step. It could be bulbar beginning I suppose but look at breathing first. BTW you can have some bulbar symptoms from LMN disease even if you have no UMN involvement at all
 
I find when they ask those questions to either get clarification or explain your symptoms because often they mean something different than what we as pals and cals may be thinking.
 
I have the same issue Canmark. My diction is perfect-people can understand me perfectly, but my voice will suddenly cut out. in my case I think its a lack of breath. If i speak fewer words on a breath it doesnt happen
 
Thanks for your feedback, everyone. I’m inclined to believe that it’s related to breathing. It seems to happen more when I’m speaking a lot or speaking under stress. (Recently I’ve had some stressful phone conversations with this agency that was supposed to be providing me with PSW service. I could sense that I was sort of gasping in trying to explain the situation.) I also find speaking more difficult while lying on my back, which again may point to breathing weakness. It’s frustrating, though, because I’m so physically weak that speaking is all that I have. And because my primary caregivers (my mother and, to a lesser extent, my father) are so forgetful (and unthinking), I’m always having to explain everything that they need to do to help me. It’s frustrating to have to say things again and again and again – and that frustration also makes my speech more choppy.

My next appointment at the ALS clinic is in mid-March, so I’ll get the breathing test done then.
 
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