Breathing?

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Phil M

Senior member
Joined
Dec 28, 2008
Messages
599
Reason
PALS
Diagnosis
5/2008
Country
US
State
Ga
City
Snellville
For those with weak breathing, could you easily notice when your breathing started to become effected? I haven't been to the neuro in a while, and don't go back until Aug.
 
When your breathing is affected you will definitely be aware of that fact. You will not need a neuro to tell you. It is unmistakable.
 
Phil, for me it was, like everything else with this f-ing disease, a creeping thing. I just noticed that I was panting all the time and my FVC is still fairly good at 65-70%. Now that I am on bipap at night it is not so bad but between my weakening arms and legs making it a real chore to do anything and weakening breathing muscles I am still short of breath often.
 
Thanks Joel! you are very helpful as usual! Cheers
 
Breathing? Yes, you go along and realize that you are panting just walking up the stairs...really didn't think too much of it fora while..thought I have just done a little to much that day.ummmmmm then go in to clinic ..breathing test done...oh my goshits in the 40s. Appointment made for pulmonary specialist...another test done in a month.. Oh great. This time it is in the high 30s. So Nero says time for feeding tube..asap.. Ok, had that done.. Oh well it only dropped to the 20sthis time... Released from hospital with two oxygen tanks in hand.it is the new companion to the bipap... Going again to Nero in July...praying and hoping it has come up some......that's my breathing story...hugs Linda
 
Laying down flat, especially back, but sides too... getting out of breath walking and talking at the same time. Those were the first & still primary culprits.

I also had horrible headaches which would wake me in the night, and just getting up and breathing deeply in and out for a bit would make them go away. I did not and do not snore (or so I'm told) so, sleep apnea can happen without snoring or a feeling of obstruction.

With me its my MIP and MEP that is particularly low, MEP at about 20% and MIP at 40%. FVC fluctuates quite a bit, it was at 80% last week for clinic.
 
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What are MEP and MIP? I haven't heard these terms before.
 
MEP - Maximum Expiration Pressure
MIP - Maximum Inspiration Pressure
 
What are "good" numbers vs "bad" numbers? I'm going to call the pulmonologist's office tomorrow and get those numbers. I checked my notes, and they're are not listed. However, they did so many different breathing tests, I feel certain they did these. Since no one ever mentioned them, I'm guessing the numbers are good.
 
My mum was diagnosed with bulbar onset als in Aug 2009. She is now starting to feel she cant sleep at night, not getting enough air, she is alsl getting headaches. We have an appointment with neuro team next thurs but I am worried there wont be enough time to talk about everything as we need to talk about peg feeding as she has lost aprox 40lbs or more. I am so worried about her and I feel I am failing her and not getting her all the help she needs.
 
Hi
I was about to do a thread on breathing when i logged on today so I will jump in on this one if that is okay. I have not been able to walk and talk for about 8 months (not much anyway) my breathing while walking, sleeping ,etc is fine but I run out of breath when talking dont have any headaches although I do get very tired which makes my speech worse ,I had neuro appointment
2 weeks ago and my breathing was 71 the nurse said that was as good as someone 20 years younger I dont know what it was befor but I asked this time I am in my late 60s and am only small which apparentley is part of the equasion ? I am presuming that this is the start of lung problems although the neuro didnt seem concerned and said I was doing well I would appreciate
some of your experiences as I do value them (you are living with this horrible monster ):!:
take care all of you
Scouse
 
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