Husband's refusal to use NIV - ideas?

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Sophia51

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Jun 15, 2019
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Loved one DX
Diagnosis
05/2019
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UK
State
NY
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London
My husband has rapidly progressing bulbar onset ALS. He should really be using his NIV now as he has trouble breathing at rest. His current ALS FRS R score is 7. He gets panic attacks when he uses it ,despite lorazepam.The max he can stand to do is an hour a day. What can we expect in the next few weeks, if he continues to refuse? Many thanks, S
 
Is he refusing out of principle because he wants to bring his ALS adventure to a more rapid close? Or is the usage of BiPAP physically uncomfortable for him?

If it’s the former, then that may be his choice philosophically. However, I suspect the latter is more likely, and if the setup can be made more comfortable for him, he will see the benefits and be more willing to use it.

It may be an issue of mask fit, mask style, or just getting used to the mask. Starting out one hour a day while watching tv is good, and increasing from there. He may need to to try different masks or have the straps readjusted.
Or the machine settings may need adjusting. If the pressures and backup rate are set too high, for example, it can be very uncomfortable.
 
Sophia, my PALS had a difficult time for the first couple of weeks with the bipap. He felt panicked and uneasy in general. Actually, I think part of his mental state was attributable to CO2 buildup, which made him frankly incoherent and somewhat paranoid. Once he started using the bipap all night, he calmed down a lot and was back to his "normal" self.

We got him nasal pillows for daytime use. It might help your PALS feel less panicky because it frees up his face quite a bit. The whole apparatus took some time to get used to and we did a lot of adjustments in the first couple of weeks. Now he can't be without it for any length of time and is using it 24/7. It has made a huge difference for us but our situation is different from yours, he is a slow progressor. He has been using bipap for a year now.

Hopefully your PALS will see some benefit and can adjust to it.

V
 
Thank you both very much.
I don't think he's refusing in order to bring this experience to an end - he just doesn't like the mask and the sensation of pushing in and out. We have tried a couple of other masks - but I think the bulbar involvement doesn't help much. I think we will just have to try to expand a little from an hour a day and hope that he gets used to it. I'm aware that time is against us though - if his rate of progression keeps up, he's likely only a couple of months left - and I'm not keen to spend precious time fighting over the NIV.
I'm very anxious about what his QOL will be like in a few weeks if he still refuses. Palliative cafe team are super helpful, and seems to have a whole range of mediations to help him - it just feels like giving in a bit early.
 
I tried the machine out myself and was able to find the rhythm after a while. My partner watched. Then I told him what I did and how that felt to me. Then he tried it again and it worked much better - after a few tries. However, if the settings are not right for the pALS not much will work. We had to get help with the settings first. Laurie here in the forum helped us with the settings.
 
I would firstly get his settings checked to be sure they are correct - remember if he is progressing rapidly, the settings may need adjusting quite often to match the changes in his muscles.
Try giving him the meds and having him sit in a place he is most comfortable and watching tv or listening to some music or a book he likes a lot. This will help him to be more relaxed.

When you say the bulbar involvement doesn't help much, would you be able to say what you mean by that? Is he having a lot of trouble with saliva pooling and the mask increases this, or you can't get a good mask seal because of facial atrophy or something else?

It's hard when you feel the pressure of racing against time. My husband was also bulbar onset and rapid progression. He refused to look at NIV until he suddenly wanted it in his last weeks but we had no chance of getting that up and running in that time frame.
 
All of the above advice is great. The important thing is not to focus on the mask, but on something else that's happening.

Happy to help with mask ideas -- also cloth liners such as you can buy or cut out from a handkerchief or T shirt, and nose bridge tape like Nexcare may help with seal -- and help you tweak settings if needed once he has enough experience to see if they are workable. What masks has he tried?

Best,
Laurie
 
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