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sounds terrifying. sending healing thoughts your way. *NM* temeraire Send a noteboard - 04/11/2013 01:22:13 AM

View original postFor those of you that attended the Michigan Gathering in 2004, I'm sure many if not all of you remember my husband Chuck. And that is who this post is about.

View original postTo catch you all up, I did in fact leave Chuck in 2006. We were separated for almost 5 years, and we got back together in 2011. We have been together since then.

View original postSo, now you know who we are talking about. Here is my story.

View original postIn August of 2012, my husband went out with his friend for drinks. The next day, the friend called me and this is how that conversation went:

View original postFriend: What's the matter with Chuck?

View original postMe: Nothing, why?

View original postFriend: Um. Dude can't talk.

View original postMe: No. That's just what he sounds like.

View original postFriend: Seriously - he needs to go to the doctor. That is NOT what he sounds like.

View original postWell, it turns out the friend wasn't wrong. After a stop at our family doctor, who ordered an MRI and sent us DIRECTLY to a neurologist, and that doctor after running several tests that took several months sent us to another group of doctors at a different hospital - and almost a year of tests and tests and tests after that they great minds of neurology have decided that my husband has either ALS or FTD/MND (which is basically ALS with dementia).

View original postBasically, he is losing the use of his muscles in his neck. That means, breathing is harder; eating is difficult and getting more so daily, and eating while breathing is a life or death experience almost weekly.

View original postThe reason I am sharing this with you all, is because I believe in the power of prayer, and in the power of sending good thoughts. If we've EVER needed these things, the time is now, so I am openly asking you for them.

View original postChuck is not doing well. He is down to eating soft foods only, and not much of that. He is still choking on his food, and coming close to aspirating even with this measure. His ability to speak is almost gone; in fact, I understand about 55% of what he says these days. Most of it is just a blur of sounds. And this morning he choked on "nothing". He just started to choke because his neck muscles just aren't working like they should.

View original postChuck can use your prayers/good thoughts. I could use them too. And my children - well, I think they need them most of all.

"it's like the real world, except there's dragons!"

cw, you are missed...
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Many of you know that my husband is ill - and if you didn't, now you do. - 01/11/2013 09:58:15 PM 1090 Views
I am so sorry to hear that - 02/11/2013 01:46:02 PM 534 Views
It means a whole lot. Thank you very much. - 04/11/2013 06:42:33 PM 583 Views
You have my thoughts and prayers. - 02/11/2013 07:10:12 PM 540 Views
I am doing my best - 04/11/2013 06:43:38 PM 667 Views
I'll pray for you and Chuck and your family x - 02/11/2013 09:54:13 PM 616 Views
Thank you <3 *NM* - 04/11/2013 06:41:59 PM 312 Views
Sending good thoughts your family's way. *NM* - 02/11/2013 09:56:19 PM 342 Views
Thank you Greg. <3 *NM* - 04/11/2013 06:43:55 PM 349 Views
Oh, how awful! - 03/11/2013 11:11:53 PM 601 Views
It is nothing short of horrifying. - 04/11/2013 06:45:29 PM 627 Views
sounds terrifying. sending healing thoughts your way. *NM* - 04/11/2013 01:22:13 AM 303 Views
Thank you so very much *NM* - 04/11/2013 06:45:46 PM 361 Views
That's horrible, very sorry to hear that. *NM* - 04/11/2013 11:11:55 AM 297 Views
Thank you. It is. *NM* - 04/11/2013 06:46:03 PM 357 Views
Thanks everyone. - 04/11/2013 01:49:45 PM 539 Views
- 04/11/2013 06:23:20 PM 603 Views
Thank you Sareitha - 04/11/2013 06:46:25 PM 757 Views
You have my prayers, and I'll add him to the church prayer list. - 05/11/2013 12:00:55 AM 521 Views
Thank you Danny! It means a lot to us . *NM* - 20/11/2013 02:17:34 PM 345 Views
I'm so sorry to hear that. Your entire family is in my thoughts. *NM* - 05/11/2013 01:29:49 AM 356 Views
Thank you <3 *NM* - 20/11/2013 02:17:58 PM 360 Views
That's awful, I'm so sorry - 05/11/2013 02:05:53 AM 558 Views
Thank you! Every prayer helps!! <3 *NM* - 20/11/2013 02:18:21 PM 350 Views
You know you have my support. I wish there was something more I could do for you. - 05/11/2013 04:46:37 PM 673 Views
We are all in counseling - 05/11/2013 08:08:16 PM 1038 Views
I'm so sorry to read that. - 08/11/2013 04:14:58 AM 648 Views
I'm sorry, my thoughts and prayers will be with you and your family - 20/11/2013 11:39:17 PM 1068 Views
Thank you so much. *NM* - 25/11/2013 02:19:46 PM 347 Views

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