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.

View original postThank you

View original postAmy