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Sareitha Sedai Send a noteboard - 04/11/2013 06:23:20 PM

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For 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.

To 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.

So, now you know who we are talking about. Here is my story.

In 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:

Friend: What's the matter with Chuck?
Me: Nothing, why?
Friend: Um. Dude can't talk.
Me: No. That's just what he sounds like.
Friend: Seriously - he needs to go to the doctor. That is NOT what he sounds like.

Well, 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).

Basically, 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.

The 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.

Chuck 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.

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

Thank you
Amy


That sounds awful. I'm so sorry.

If you are from Betelgeuse, please have one of your Earth friends read what I've written before you respond. Or try concentrating harder.

"The trophy problem has become extreme."
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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 1294 Views
I am so sorry to hear that - 02/11/2013 01:46:02 PM 721 Views
It means a whole lot. Thank you very much. - 04/11/2013 06:42:33 PM 776 Views
You have my thoughts and prayers. - 02/11/2013 07:10:12 PM 727 Views
I am doing my best - 04/11/2013 06:43:38 PM 881 Views
I'll pray for you and Chuck and your family x - 02/11/2013 09:54:13 PM 813 Views
Thank you <3 *NM* - 04/11/2013 06:41:59 PM 416 Views
Sending good thoughts your family's way. *NM* - 02/11/2013 09:56:19 PM 443 Views
Thank you Greg. <3 *NM* - 04/11/2013 06:43:55 PM 462 Views
Oh, how awful! - 03/11/2013 11:11:53 PM 847 Views
It is nothing short of horrifying. - 04/11/2013 06:45:29 PM 856 Views
sounds terrifying. sending healing thoughts your way. *NM* - 04/11/2013 01:22:13 AM 397 Views
Thank you so very much *NM* - 04/11/2013 06:45:46 PM 476 Views
That's horrible, very sorry to hear that. *NM* - 04/11/2013 11:11:55 AM 391 Views
Thank you. It is. *NM* - 04/11/2013 06:46:03 PM 480 Views
Thanks everyone. - 04/11/2013 01:49:45 PM 705 Views
- 04/11/2013 06:23:20 PM 785 Views
Thank you Sareitha - 04/11/2013 06:46:25 PM 973 Views
You have my prayers, and I'll add him to the church prayer list. - 05/11/2013 12:00:55 AM 712 Views
Thank you Danny! It means a lot to us . *NM* - 20/11/2013 02:17:34 PM 472 Views
I'm so sorry to hear that. Your entire family is in my thoughts. *NM* - 05/11/2013 01:29:49 AM 447 Views
Thank you <3 *NM* - 20/11/2013 02:17:58 PM 484 Views
That's awful, I'm so sorry - 05/11/2013 02:05:53 AM 765 Views
Thank you! Every prayer helps!! <3 *NM* - 20/11/2013 02:18:21 PM 471 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 872 Views
We are all in counseling - 05/11/2013 08:08:16 PM 1295 Views
I'm so sorry to read that. - 08/11/2013 04:14:58 AM 839 Views
I'm sorry, my thoughts and prayers will be with you and your family - 20/11/2013 11:39:17 PM 1327 Views
Thank you so much. *NM* - 25/11/2013 02:19:46 PM 471 Views

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