First signs of breathing issues?

[grgizi121]

Hi,
My husband was diagnosed in May 13 and to date hasnt shown any signs of breathing problems, but his speech has deteriorated.
His last overnight assessment was in June and he had a letter to confirm it was 'normal'
I have noticed his breathing has been very noisy the last few weeks and his snoring is worse than ever. But the thing that concerns me most is this week he has been unusually tired and sleepy too. Barely able to get out of bed at all. His energy levels have remained quite good previously.
Could this be the start of breathing problems? Or am I am i just sounding paranoid?
Thanks for your help

 

[anderkling]

It's a bit unusual to have a sudden drop in energy levels, although ALS does impact energy levels for sure. Since I've been diagnosed, I've been low in energy. Naps during the day help. Headaches in the morning suggest difficulty exhaling at night (CO2 buildup). Is he depressed perhaps? Does he notice any changes in breathing? My breathing issues started when I felt short of breath, especially in bed at night. My decrease in breathing showed up on a breathing test. I now use a foam wedge for sleeping, so that I'm not lying down flat. This has definitely helped. I would suggest going back to your neurologist or pulmonologist for information and peace of mind.
- Charlene

 

[LeprechaunSean]

I had to do an Fvc for my upcoming Peg surgery, they are a quick easy test that can be done just about anywhere and will usually show any decrease in breathing function. It takes about 5 minutes. Called "spirometry" .

 

[lgelb]

Breathing can deteriorate quickly. The picture you paint says he would likely benefit from BiPAP. An overnight sleep study 3 months ago that's "normal," meaning his sats stayed high and he didn't have periods of diminished air flow, doesn't contradict this. I'd bring the doc a recording of your husband's breathing while awake/noisy and snoring while asleep and get new PFTs done.

 

[scaredwifetx]

I was just getting ready to try and find a post to ask about my husband when i came across this one so hopefully I can post here. Steve has also been breathing different the past few weeks. He is also snoring but what is concerning me the most is his voice. Last night i noticed his vocie sounded a little raspy. I just got off the phone with him today and he sounded hoarse and cleared his throat a couple of times while on the phone. He mentioned to me that he did not know what was up with his voice. He did not have a cough, sore throat and has not had any breathing issues. This same thing happened a couple of weeks ago. He is not bulbar onset and is still walking but now walks with a cane. Is this progression and should I get him to the doctor? Clinic is not until Nov and that is the next time he is suposed to see his doctor.

 

[lgelb]

The time to leapfrog the clinic schedule is when you need something that's going to make a difference, like BiPAP for difficult breathing. There's nothing to be done about voice, so I wouldn't rush in just for that, but I would start looking into technology options (hardware, software) to be prepared should things get worse. There are many good threads already about iOS and Android options, Windows and Mac.

Voice and breathing are to an extent different muscles, although breathing difficulties make speech problems worse. So a raspy voice does not mean that his breathing is worse, but it's always something to keep track of.

As you've probably learned by now, Deb, the pattern of what is lost when isn't dependent on onset site (like limbs vs. bulbar), nor does the same "order" continue down the line. Some people never lose their voice; many others have decent FVCs at death. It's not really about the numbers. We just need to follow the people.

Try Ludens sugarless cough drops...some people also find a throat spray helps. And staying hydrated is always important for many reasons. As the weather shifts, there are also allergies and dry air. You'll know more if/as things develop.

 

[scaredwifetx]

Thanks..that info helped a lot.