Recent content by Donnaelan18

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    Winding down

    So true. There’s no time for mindfulness or much rest. I’d be happy to get just 6-7 hours of uninterrupted sleep.
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    Winding down

    You hit the nail on the head. Prayers to everyone living with this.
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    Winding down

    You are amazing! Rant and rave all you want - this hard - the hardest illness I’ve ever been exposed to.
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    late stage alarm and sensor systems

    We are well into this stage with no movement other than eyes . I either speak out the alphabet and he looks away when I get the letters, read off pre written requests from note cards that he looks away when I get the right one or I have pre set screens phrases set on his dynavox for him to...
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    CALS Roll Call Continued

    First time posting. We’re almost 5 years in. Trach with trilogy And feeding tube. Sold my husbands “play truck” today. Very hard thing. But I’ve been in the same boat. Keep and buy things that makes him happy
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    Pals losing eye movement now

    I’m trying all of these. Thanks for the suggestions. Any other feedback would be appreciated as it’s still an issue
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    Pals losing eye movement now

    No - everything else is done. The eyes are it.
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    Pals losing eye movement now

    Thank you. We’re using refresh and it helps but doesn’t fix it completely. We have the same issue with the goop. Very frustrating.
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    Pals losing eye movement now

    Husband is now losing ability to move and close eyes. If he loses it completely, what do you do?
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    Note of passing

    God bless
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