no Breathing Issues?

[Barbie]

Is there anyone out here that is not having breathing issues--or at least only minor ones? After 5 years of ALS, My husband does not use a bi-pap at all but I do not know his FVC (never had a successful test due to his inability to seal his lips on the test instrument). He says his breathing is fine. I know that his breathing is reduced but not a problem.

I just wonder if there is anyone else that has a similar situation...

 

[sadiemae]

My hubbys breathing has remained at 68% since his. D.x in 9-09. He had als for about 2 yrs before his d.x he still does not need to use his bipap. I wish he would though.
One doc said his als is umn dominant. Instead of the 2-5 yrs. He said 7-12 yrs.

 

[Ms. Pie]

So far I have no breathing problems. I did take a breathing test last year just to get a baseline and it was very good and over 100. I have a second breathing test scheduled for next month to see where I stand. I do notice that my core is weaker. I asked my Pulmo if he'd heard of anyone with ALS that didn't develop breathing problems and he said "not really" whatever that means. We shall see.

 

[Barbie]

Sadie,I think my husband is also UMN dominate. I am not sure, but I think breathing is LMN symptom? others here know more than I...
I swear, sometimes I like to fantasize that he doesn't really have ALS and that the diagnosis was wrong!

Marta--keep on breathing girl!

 

[Toto's Dorothy]

I can date my symptoms back to 2008. Other than the respiratory arrest back in november, my breathing has not been an issue. Now, I did fail the breathing test the 2 times I took it. But this was after the november episode. I believe the doctors mentioned about having the test done in a bigger hospital with a hyperbaric chamber. I figured I can wait a little. So far, I'm not complaining.

Hope you can find your answers,

Toto

 

[minnesota]

Hello,
My hubby's breathing is still over 120 for the last three years. His core is weaker and recently arms and fingers (started in R foot). No bi-pap at this point. Hope that helps ans. your question/

 

[Poet Chistopher Robin]

I had been diagnosed with COPD and extreme emphysema (basically meaning my lungs are gone) before I was diagnosed with MND and to find out that MND affects peoples breathing only added to the grief.

However I’ve only had the one really bad turn, luckily, and it felt much like I was drowning. Most people say I should have a fan on blow as it helps greatly

 

[rcharlton]

Barbie, how is your husband's sleeping?

I thought I had no breathing issues just before I went on the bipap. No shortness of breath and no CO2 headaches which are the usual hallmarks of breathing issues.

The one symptom which I initially did not connect with breathing issues was restless sleep. I was not getting any deep sleep and would wake constantly during the night. The bipap fixed this problem.

When it comes to bipap, it is better to err on the side of caution. Studies have shown that it will increase longevity in PALS.

 

[Magpuff]

At the risk of jinxing myself, I will say there are no breathing problems as yet.

Breathing tests have been in the high 60's. Sleep well at night up to 10 hours except for getting help turning over. Have had several coughing spells (not choking) that have been scary.

Arms and hands are gone and am in PWC most of the day. Is that considered UMN?

 

[jb63]

I believe my core is effected and my FVC is 77% (after a week of the flu) and my cough seem a bit weaker. The only time I feel short of breath is when I think about breathing. I get so anxious and fearful about the breathing aspect of MND. I take a xanax and improve. I am LMN only.

Is there any exercise to help increase lung and diaphragm capacity and function? Or is the pulmonary system like the rest of the muscles...not to be over worked? Is there a way to improve the cough reflex?

 

[Danijela]

Hi,

from what I know PLS and upper motor neuron dominant ALS patients are less likely to develop respiratory symptoms at the same pace as 'pure' ALS patients. Having said that, I know of one person with PLS who after 12 years developed respiratory issues, due to paralysis of diaphragm, but is is not significant and he is stable.

Dani

 

[ltbeauti]

i was diagnosed 2008 and have no breathing issues yet (fingers crossed as not to jinx)(and thank God) kinda contradictarory, just covering all the bases.

I have my FVC at 97% still, and I was a smoker. At clinic when they do the breathing test, they give me some crazy number and I get them to use a formula to convert it to a percentage so that I can keep record of it on another ALS site. I do find myself breathing harder when doing regular things, but I think that this is b/c of my muscles getting tired out just walking or doing daily activities. I am bulbar onset

 

[Ladyinn]

I am using my bi-pap for naps during the day and night. I am told that my lower diaphragm is frozen and no air gets into the two lower lobe of my lungs. I have been using it for over a year and feel more rested when I get up. My voice is softer it used to be and when talking I run out of breath in the middle of a sentence.

I was diagnosed in 2008 and had the bipap prescribed in 2010. My legs no longer hold me up my arm is useless, as is my right arm, but the fingers on both arms have the minimal strength. I use Dragon speak for e-mails, and I use a power chair to get around the house. We are in the process of shopping for a used van so that I can get out and about this summer.

It seems that we'll all progress differently but one thing for sure we all adapt and go on!

 

[Ms. Pie]

Amen Diane!

 

[cukita99]

i was diagnosed in 07 but symptoms started 03. no bi-pap no breathing problems finger cross