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scaredwifetx

Very helpful member
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Jul 25, 2015
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1,606
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CALS
Diagnosis
07/2015
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US
State
tx
City
Dallas
I have noticed a few changes with Steve regarding his sleep and his breathing. Today I had to insist that he actually sit down and talk to me. Apparently, the reason he is waking up so much at night is because he gets sinus congested and can't breath through his nose. He is on the Trilogy.

We have changed the hoses, masks, and are using distilled water. He does use the humidifier. I also asked him to try the Alka Seltzer plus night. It worked ok that night but next day he was congested so wouldn't take anymore.

He is also clearing his throat a lot during the day and has moments of panic about not breathing right and has times of feeling short of breathe. He does not use it all during the day and I suspect he should. I also suspect he should be using the cough assist because of my hearing him try to clear his throat.

It is obvious to me that he is having issues he will not tell me about as he is also having trouble swallowing, getting food stuck in his throat and is only eating very soft foods and shakes.

Lastly, it is very hard to stay on top of these things because he doesn't tell me. I have to guess than breakdown and guilt him into telling me. Also, if it concerns taking pills or a rigid schedule he will not do it. I Can say that he fears the breathing issues more than he fears the losses he is having with arms and legs.

Does anyone have any suggestions and if you have any questions that may help me to figure out how to help him? I can do my best to get answers from him.
 
Scared, I am so sorry you are having these issues. I do think breathing would be scarier than limb movement, but that's just me. I would try to encourage the bi-pap during the day. Also, maybe try some mucinex. It will thin the secretions. I found that you can get some in the infant section that are the little beads that disolve under the tongue. And it seems that the very small dose is just enough for DH when he needs it. Just some thoughts.

Hugs,

Sue
 
You should be using cough assist several times a day. It really helps, I was shocked about how much it did.

I also use Flonase at night and it really helps me with nighttime breathing.
 
Thanks azgirl and Sue. I just talked to Steve about both of your suggestions and got nowhere. He is adament that he will not take any drugs. He says there are side effects to all drugs and that only getting a few hours of sleep at night is no big deal. He is completely bullheaded and out of touch with his symptoms where it is causing him to have more problems than he needs.

I don't want to take time away from PALS or CALS who are busy trying to help those who want help. Seriously, this is so hard for me. In one breathe he tells me he wants to be around as long as he can so maybe there is a cure. In an another he doesn't listen to anything I say, his doctor says, or what I repeat from here. He sits on the couch and plays his stupid xbox all day. If I try to talk to him, try to give suggestions..than I am told that I am just making it worse by reminding him that he has ALS.

His brother is now house bound and taking anxiety medicine just to survive and is starting to worry me, I am working full time and trying to stay as busy as possible. I am home today and have been a total mess. Seriously, we are here to help him and nothing we say or do can help. Sorry this turned into a rant. I am done and I will not take up anymore precious time from PALS and CALS to figure out how to help him when he doesn't listen anyway.
 
Scared, I know they can be very bullheaded. Don't ever think you're just taking up time. Remeber these posts could also help others who might listen. Also remember he is still an adult, and unless dementia, totally has him confounded, able to make his own decisions. It's hard for us as CALS, to watch them do things we know could be helped, but it is their choice. All you can do is offer suggestions. Hugs my friend.

Sue
 
Thanks Sue. I just left the room with my computer, cried and decided to spend a few minutes here with friends. He is back to playing his xbox and I do hope the suggestions help someone so something comes from this thread.
 
I spend a lot of time clearing my nose both before and after I sleep (with the bipap). Almost an obsession.
My nose gets congested also.

Occasionally I use fluctionase but usually I just use a bunch of Kleenex.

Is he sleeping at a slight incline so secretions can drain easier?

Tillie has mentioned using saline and swabs. The saline may help you, and it's not a drug.

Finally, I have the full face mask on hand for when I am truly plugged.
 
Thanks Greg. He does use a full face mask as it is the only one he likes. He also goes through a lot of Kleenex. He wont incline the bed no matter how many times I bring it up. Maybe later today I will bring up the saline and swabs. He will not use the Trilogy during the day at all because he says its inconvenient for him to do so.
 
A nasal steroid (I prefer Nasacort) is helpful, as is saline, Nasalcrom, aspiration.

On the throat side, a cough drop w/ pectin (Luden) is not a drug...if he can use w/o choking. Or a cough syrup. Just getting enough liquid is important.

If he is using a full face mask and still waking up because his nose is plugged, likely the machine is not doing all it could -- let me know if you want help w/ settings.
 
Thanks Laurie. I will talk with him later and see if he will let us help. I already suspected his settings were off but he hasn't let me help. Is there something I can do to check the settings and work with you? There is a real big problem with denial here. Anytime anything has to be mentioned he closes off even if it's just to help. He did go into bed a few minutes ago and actually put it on so maybe he hears some off what is said. I cannot force anything on him so have to be careful
 
In one breathe he tells me he wants to be around as long as he can so maybe there is a cure. In an another he doesn't listen to anything I say, his doctor says, or what I repeat from here. He sits on the couch and plays his stupid xbox all day. If I try to talk to him, try to give suggestions..than I am told that I am just making it worse by reminding him that he has ALS.

Classic presentation to me of Bv FTD - I'm sure you can see similarities to what I described with Chris.

I don't have the answer but I know that in the first 6 months I so ran myself ragged looking for the best strategies and ways to present them. It was sapping my energy so badly. It was actually easier on me once I wasn't consumed with doing that.

I'm concerned however about his brother and what you mentioned about him being housebound and anxious. Is this another separate health issue or his response to what is happening to Steve?

Lastly please don't even feel you shouldn't state your issues/feelings/concerns here because others are busy. They won't get to read or respond to your thread, so that's easy. AND whatever you are going through and write here will always help someone else, so double value!
 
Thank you Tillie. You are always my rock when I am losing it. Mike was just stir crazy. I talked to him. I always try to get him out and have mentioned to the both of them several times to go on a trip or even just out for the day. Mike is from the Northwest and hates the heat so doesn't want to get out. They are also brothers and so much alike. Homebodies, both of them. Mike did get out today ...drove around for a while which helped him and now its me.

I feel like I am in a dark cave all by myself. I am going to get off the anger and pity train right now. I am going to make some soap, Lotion bars and scrub. They both hate when I do this but tough!

I love you all!

:Edited for all the grammar and spelling errors. I spell and type terrible when I am upset and sometimes even when I am not. What's really bad is I send emails all day long to customers in the Aerospace industry.
 
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Deb, you can send or post the settings, if you know how to see them. If not, how to do that is posted with my profile, along with questions to ask about how the machine is working with his breathing. Since he's not into talking about it, maybe you could squeeze in one at a time, or just ask if there is anything he wishes the machine could do better.
 
Thanks Laurie. I will check tomorrow after he wakes up and get back to you.
 
Scared, I had to increase steves volume and pressures a couple of times. I was able to communicate with steves pulmo who okayed it. Steve used a full face mask at night but nasal pillows during the day. We went thru enough Kleenex I should have bought stock in it. Steve i ntially, was able to use a nose spray but as he lost fine motor control he couldnt manipulate it. I had to help.

Please remember what you see now is not the man you married through no fault of his own. Spouses will always frustrate the crap out of each other at times. Als seems to make it more frequent.
 
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