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
And said a little prayer for y'all. Will do it again. I am very glad to hear he is mo re comfortable. Sending love your way :-)
*NM*