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An update about my husband Amy Send a noteboard - 04/09/2014 06:37:55 PM

Many of you got to meet Chuck when we Gathered in 2004. And as I stated in my last update, he was diagnosed in October 2013 with ALS, or Lou Gehrig's disease. You know, that thing everyone was pouring water over their heads for.

Anyway, just as an update, he can no longer speak at all, or even make noises that sound like any kind of speech. He uses text to speech applications (on both computer and his phone) to communicate (when he doesn't just opt for Charades), and even with that, I am grateful that he can do that still. He cannot eat or drink (since Januaryish). He can "sip" water from time to time, but if he does, it takes him over a minute from sip to swallow - it is that difficult for him. He can walk, but he has slowed down tremendously even in the last few weeks, and is starting to get wobbly. He weighs about 135 lbs - and has stayed at that weight for about 3 weeks.

About 3 weeks ago, the doctors ordered Hospice care for him because he needs the extra care, attention and medication that comes with Hospice. The event that triggered this change in care is because he is having trouble breathing - and all of the things they ordered to help it didn't help it. There is nothing they can do now, medically, other than "make him more comfortable".

The good news is, he IS more comfortable. The nurse has gotten him the meds he needs, tweaked them, replaced them, and then replaced THOSE. He is now taking morphine several times a day, as well as Valium several times a day. And even with these intense meds that would make most of us feel "great" - he still feels "so so", or so he says when asked.

The doctors, the nurses.. no one has said "he has X much time left". Only that he is in fact continuing to decline at somewhat of an alarming rate. However, because ALS is such a horrific illness, he can remain in Hospice care as long as he is still declining. Which means now we hope, and we pray and we fight to hang on as long as possible, and he will have the care he needs for as long as he needs it.

If you have a moment, please say a small prayer for Chuck, or send a good thought. We would really appreciate it. I'm not asking you to post or whatever, and I know a few of you REALLY don't like me - but even if you don't, the same lot of you I'm sure have nothing against Chuck - so I'm asking even you for a kind thought or prayer in his direction. I truly and honestly believe every good thought, and every prayer helps, even if only a little.

Thank you!

Amy

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An update about my husband - 04/09/2014 06:37:55 PM 966 Views
He, and your whole family, will be in my thoughts. - 04/09/2014 07:31:48 PM 682 Views
Thank you Joe. *NM* - 04/09/2014 08:35:34 PM 350 Views
You're all in my prayers, Amy. xx *NM* - 04/09/2014 07:56:35 PM 415 Views
Thanks Rebekah. <3 *NM* - 04/09/2014 08:35:48 PM 333 Views
good thoughts coming at you - 05/09/2014 04:32:55 AM 688 Views
*hugs* back <3 *NM* - 08/09/2014 06:27:10 PM 336 Views
I'm so sorry you're all going through this. - 05/09/2014 03:27:20 PM 826 Views
Thank you so much *NM* - 08/09/2014 06:27:29 PM 362 Views
I read your previous post about Chuck again yesterday. - 06/09/2014 04:13:20 PM 751 Views
Thanks Ave! - 08/09/2014 06:27:49 PM 655 Views
More comfortable is good - 07/09/2014 04:30:00 AM 654 Views
Thanks John - 08/09/2014 06:28:16 PM 677 Views
Thank you for the update Amy. - 07/09/2014 02:49:47 PM 646 Views
Re: Thank you for the update Amy. - 08/09/2014 04:45:26 PM 743 Views
Much thought and many prayers headed your way. <3 *NM* - 08/09/2014 06:44:25 AM 365 Views
Thank you so much. It really means a lot! *NM* - 08/09/2014 06:37:49 PM 321 Views
sorry to hear this - 08/09/2014 09:48:37 PM 624 Views
Thank you Notes *NM* - 19/09/2014 03:04:32 AM 426 Views
thank you for the update... - 09/09/2014 05:28:40 PM 1335 Views
Thank you so much. *NM* - 19/09/2014 03:04:52 AM 337 Views
I've always liked you - 11/09/2014 04:34:40 AM 639 Views
Than you, I appreciate it. *NM* - 19/09/2014 03:05:12 AM 342 Views
My Nan had ALS - 19/09/2014 01:25:50 PM 748 Views
Praying... - 22/09/2014 03:59:19 PM 889 Views

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