Old 12-17-2018, 08:54 AM #16 (permalink)
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Default Re: Grief/ Crying/ Can't Breathe

Katalin - I’m so very sorry for the loss of your dear sister. I’m sure your Mom is devestated by the loss as well. No parent should have to lose a child. I can see my husband’s passing was harder on my MIL than her own husband 2 years ago.

As others have said, you will have peace is you follow your Mom’s wishes. It hard to watch in the end but you know you are showing them respect and granting them the dignity they so want and need at that time.

My thoughts and prayers are with you.
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Old 12-18-2018, 04:46 PM #17 (permalink)
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Default Re: Grief/ Crying/ Can't Breathe

I truly appreciate the kindness of all your comments and that you're willing to share your experiences with me. It's gold.

xoKathy
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Old 12-18-2018, 06:46 PM #18 (permalink)
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Default Re: Grief/ Crying/ Can't Breathe

Katalin, if she does agree to try a BiPAP but is reluctant because of the face mask...
hopefully they will also bring the nasal one for her to try too. It is just over the nose.
I switched over to the nasal... it's not so cumbersome (if that's the right word).

Hope she'll give in and give it a try.

PS. Hopefully one with the humidifier too. Really needed with the nasal piece.

Last edited by Clearwater AL : 12-18-2018 at 06:52 PM
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Old 12-18-2018, 07:17 PM #19 (permalink)
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Default Re: Grief/ Crying/ Can't Breathe

Thanks, Clearwater, those are great observations. I do think the mask would be the most off-putting part, that and the fact of what it would represent as a progression. And humidifier version. Check!

We see our dear ALS Society regional manager tomorrow. I know we'll have a good conversation about this then.
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Old 12-18-2018, 08:20 PM #20 (permalink)
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Default Re: Grief/ Crying/ Can't Breathe

Just to echo Al even more strongly, a humidifier is needed with ANY PAP, ANY MASK. You can leave it off when not needed, but at least part of the time, in any climate, you will.
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Old 12-20-2018, 09:33 AM #21 (permalink)
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Default Re: Grief/ Crying/ Can't Breathe

Loss of breath while crying might be related to ALS - I would ask your mother's doctor.

At the last support group meeting I attended one of the other PALS (bulbar onset) raised a question (via her iPad voice assistant) of whether others had experienced loss of breath while crying as she was noticed for herself, lately . None of the others at the meeting reported that they had noticed this but we did agree that it does makes sense that crying could interfere with normal breathing.

Is your mother being seen at an ALS clinic with a team? Do you have a language specialist on your - it might fall into their area of expertise.
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Old 12-20-2018, 09:47 AM #22 (permalink)
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Default Re: Grief/ Crying/ Can't Breathe

Thanks, Doglady, we do have a speech language pathologist on board at the ALS clinic. The spasm hasn't happened again since last week. We'll see how it will be at the visitation today. Will be the last chance she has to see her daughter. Sad times.
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Old 12-20-2018, 10:12 AM #23 (permalink)
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Default Re: Grief/ Crying/ Can't Breathe

Katalin-
So much to be sad about already and loss of a daughter must be over the top. I'm so sorry. Can I just add that if problems persist for your mother it might be good to let your doctor know what's going on and see if they think a visit earlier than February is needed.
Mary
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