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Old 03-30-2016, 01:09 AM #11 (permalink)
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Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
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affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,969
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Default Re: CALS Roll call

Auto it sounds to me like your hospice are really helping you keep him comfortable and that is the main thing right now.

If you want to adjust the bipap yourself, Laurie is the person to work with you on it that's for sure.

The main thing is to recognise that he may be starting to shut down, but maybe he will level out a bit again and continue on for a while. So hard to tell sometimes with this disease. It is good though that they have forewarned you that he may just not wake up anytime. Sometimes this happens even with PALS who don't seem to be declining much, so it's really worth CALS understanding that this can happen. Personally I would prefer that for myself, just go quietly in my sleep.

I'm glad they are bringing the kit, even if it turns out you don't need it yet, you will have it on hand and even that can be a kind of comfort for you.

Do feel free to start a thread of your own if you want to contain a conversation around this and get lots of support xxx
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