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Jackfishem

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Dec 29, 2015
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22
Reason
Lost a loved one
Diagnosis
12/2014
Country
US
State
LA
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Lake Charles
Mom dx with FTD-PPA in 2014, restrictive lung disease and ALS in 2015, and COPD in 2016. We switched out her cpap for a bipap in January. Mom only uses the bipap to sleep. It's normal for her to get out of breath with the slightest bit of activity, but today I noticed something concerning. When she inhaled, she had the indentation above her collar bone that is seen in asthmatics and is a sign of respiratory distress.

I have a few questions for y'all with experience. Is this just normal disease progression? Is this something I need to report to her caregivers? Is this a sign that mom might need her bipap during the day? If so, does she just use it for a few minutes, like a breathing treatment?

It's really hard to google answers with all the complicated words to be searched. Any guidance y'all could provide would be appreciated!
 
Yes you can call the doctor but first I would try getting her to use the bipap during the day. It makes it less stressful on the body to breathe.
 
I'm not sure exactly what indentation you're referring to, but if you see fluttering, certainly she could be breathing using accessory muscles as her chest wall weakens. More important IMHO is that she is getting out of breath "with the slightest activity." That signals that BiPAP during such activity might be a good idea, i.e. using it during the day.

And no, BiPAP is not a breathing treatment but a way for the muscles that do the work of breathing to rest, and for the body to get the oxygen it needs and expel the CO2 that it doesn't need, in amounts closer to people who don't have lung disease/ALS.
 
If she uses the bipap during the day, does she just use it until the shortness of breath passes? I'm not sure of the best way to use the machine to help her.
 
If she is at a point that she needs it and it is properly adjusted, she should be comfortable with using it (via nasal mask) pretty much all the time. Not sure how her FTD stands but generally she could guide you as to her comfort.
 
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