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trying to stay positive

Distinguished member
Sep 17, 2007
Chicago area
Hi all,

As many of you know, my husband was DX with limb onset ALS in 8/07, first symptoms appearing in spring of 05. For the last few days he has had some shortness of breath. I noticed it today when he walked upstairs, and my daughter says he had it yesterday just sitting at the computer. Could he be starting to have respiratory symptoms? Do the symptoms come and go? I'm concerned that it may be happening more often than he is letting on, so he won't worry me. His last FVC at clinic visit a month ago was 94% up from 89% since he got his cpap machine. Thanks for any input.
I, too, have wondered about breathing issues and when do they come on. Also leg onset late last year. Recently there are times when I'm just sitting or lying there and I have an unexpected gasp of breath. Nothing I can relate it to and it kind of startles me. Could this be the start of something? Any suggestions would be helpful.

Linda, I am wondering why your husband has a c-pap instead of a bi-pap machine, which is what is usually prescribed for ALS patients since the breathing issues are different than some other illnesses (for example sleep apnea, for which c-pap is commonly used). It was my experience with my dad that the symptoms could become more severe in a month's time and he needed fairly frequent doctor visits to keep up with his changing needs. Your husband's progression might not be that rapid, but if you have concerns, I think it is important that your husband discuss them with his doctor. Hopefully that can help you stay ahead of the curve.
Hi hboyajian,

My DH does have sleep apnea. When he told the Dr. this at one of his clinic visits, she sent him for a sleep study. The people at the sleep clinic knew of his DX, but said he only needed a cpap at the time & that ins. would fight paying for a bipap. He doesn't use it on a regular basis. :-? I did talk to the nurse at the ALS clinic the day after I posted. She did not seem too concerned & thought it had more to do with his anxiety and trying to adjust to not working anymore. His last day at work was 2/29. She told me to try to get him to talk the lorazepam they had prescribed. (he doesn't take that very often either) :-? He just seems so wiped out all the time. He's not having any headaches upon waking. Since he doesn't say much, it is sometimes difficult to tell how much is physical in origin & how much is from depression &/or boredom. He did mention to his sister yesterday that he can tell that he is getting worse. :(
I agree, it sounds like bi-pap might help. I do not understand that they did not think his diagnosed. was an issue with breathing thing, maybe you should call the docs.
My husband, Mike was diagnosed in December 2007. His onset was the respiratory and that is the only symptom he has as of this date. Yes, his breathing is worse some days and and although his oxygen level might be 96 he will have difficulty. He might go a week and sleep alot and then have a week that is good and then go a couple of days and have more difficulty breathing. I have noticed when he has company and talks more than usual he seems to have more problems breathing later in the day. I do know that the cooler the air is in the house the better he can breath. I will probably have to wear a coat this summer! Take care and God bless you and your family.

Zina Akin Perry
Rusk, Texas
Hey Zina, I gotta can move up here to Canada for the winter (cold is no problem here :-D ) and we could come down there and warm up! On a more serious note my husband has been experiencing some shortness of breath under exertion and climbing stairs yet his oxygen level is 96 as well. HE finds when he is out in the cold he coughs alot. Maybe we should split the difference and all move to Kansas. I hear Dorothy and Toto are doing fine!
I like the way you guys think. Oh I love your garden in your blog. That is so gorgeous. Thank you so much for sharing it was lovely. I love your blog.
Thank you for sharing these numbers. My levels are at 97 and I could not figure out why I get so short of breath when getting up from a seated position or carrying some light object. I was beginning to think this was all in my head!

What really drives me nuts, though, is the nausea that comes along with it. I go to the sleep lab for anohter study on Sunday and if they prescribe a pipap I hope it takes care of this.
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