Breathing

[Bkay]

I have a question concerning breathing...when you decide not to vent what happens next. What do they do to keep you from grasping for breath. How long can you go just using the bipap.

 

[GregK]

You can go a fair while on BiPAP.

Once you've hit that limit, morphine can be used to address air hunger. This is the final phase...

 

[wishmobbing]

Hi, welcome to the forum! If you want you can tell us a little bit more about yourself and the person you care for.

I have not yet experience with this but I'm sucking in information about this, as my boyfriend had his first mild air hunger episodes last week. My PALS decided against venting (and he might to my surprise change his mind) fully aware that this might shorten his possible lifespan immensely. So for us anything from here on out (well actually from diagnosis onwards) is considered palliative.

The mask can be worn longer and longer, up until 24 h. Paying attention to not getting pressure sores is important, so changing between different masks may help. The settings on the bipap are likely to need adjustment over time. Our member Laurie/igelb here is a savant with this and often offers to help if need be.
If air hunger sets in there's meds that will keep the panic in check and make breathing easier.

I talked to a hospice nurse today and she said that Tavor alone can quickly help against little attacks of air hunger, tablets that are put under the tongue and absorbed. And morphine of course which will also deal with pain.

I'm sure others will chip in with experience and expertise. It's a good bunch.

 

[azgirl]

like everything else the time on bipap varies with each pals.
I've been using bipap for around three years, started nights and now use all but one hour a day.

no bad air hunger yet but lots of drugs to handle that.

 

[lgelb]

Welcome, B. Feel free to introduce yourself in this or another thread.

As others have said, many go years on BiPAP. The answer will track a little with whether the ALS started in the limbs or head, how well/often the BiPAP is adjusted, how much it's used, and the PALS' status in other ways, like nutrition and having reasons to go on.

There is no reason for anyone to go out gasping for breath.

Best,
Laurie

 

[Bkay]

Thank you all for you responses.
My husband started with arm weakness about 18 months ago. His right arm first and now his left. He can't feed himself, shower or wipe himself. His legs are starting to get weaker now. He uses the bipap at night and is starting to use it more during the day. He gets out of breath when walking short distances or after using the bathroom.
Again thank you all for responding
I get lots of great information on here

 

[Jlynn]

bkay, my PALS, my brother opted for no vent, no bi-pap...nothing. When he suffered air hunger he had morphine under the tongue and lorazepam for the anxiety it would cause. The best I could do for him through an air hunger episode was to administer his meds as quickly as I could get them in and speak calmly to him until relief came. I found in humid weather keeping a fan going to circulate the air helped. He also started symptoms in his hands and arms and then the legs. Hope this helps a bit.

 

[KimT]

I just want to reiterate what Laurie said that there is no reason for a PALS to gasp for breath.

When air hunger begins, treat it proactively. Don't wait until the PALS is in distress.

 

[Nuts]

Welcome, Bkay. Your question has been answered, so I just wanted to say hi and that I'm glad you've spoken up. Reading current and old posts is very informative, but someone is always here to answer question.
Becky

 

[blufftongal]

Thank you all for you responses.
My husband started with arm weakness about 18 months ago. His right arm first and now his left. He can't feed himself, shower or wipe himself. His legs are starting to get weaker now. He uses the bipap at night and is starting to use it more during the day. He gets out of breath when walking short distances or after using the bathroom.
Again thank you all for responding
I get lots of great information on here

My husband was also diagnosed in Oct. 2016. He has the Trilogy which is a NIV every night. He could not breath lying done without it. His legs are still able to hold him up. But the breathing prevents him from walking any long distances. He also has dementia early stages. Maybe this is a good thing. He really has no idea he has ALS. He never questions me about anything. He is content sitting ans watching TV all day. I do try to get him out as much as I can. But the slightest walking gets him out of breath.

 

[lgelb]

Bluffton, are you working on a power wheelchair for him? It isn't just to go out, but to be safe and comfortable at home. It does take a while, so you might want to think about getting started.

Best,
Laurie

 

[blufftongal]

I just got him a cane. But i dont think it helps much. I cant even get him to sit in the scooter at walmart. A wheelchair would be even harder. We go to the clinic next week. I will see what they say. They may take his measurements for a chair.

 

[MarieLaure]

Thank you all for sharing. My dad can still walk but it is getting harder and harder because his back muscles are not working anymore so his head drops and he tends to lack balance and he can’t walk more than a few hundred meters. Recently he was prescribed a necklace and a wheelchair. He has accepted the necklace but is very relunctant about the chair. I try to convince him that he will gain autonomy because he will be able to go longer distances. We sway between not being over worried and pushy and reducing the risk of a fall. I understand his reluctance. Basically he is the one who makes the decisions, that’s the freedom he must keep. ( but I’ scared)

 

[lgelb]

Bluffton & Marie, you might emphasize that there are months between measurement and receiving the chair, and it can sit in a corner until it's needed. So it's like insurance, not his commitment to use it.. And you guys can learn more about its benefits and capabilities while deciding on features/colors/etc., a process that may be easier before he needs it.