Reading this thread just brought tears to my eyes. Thank you for caring and reaching out.
Things are changing and I've been trying to pretend that they aren't. Matt's right hand is so weak that we've had his chair controls switched to the left side. He has an awesome arm assist for the right that allows him to feed himself, but that wears him out pretty quickly. His voice has changed to the point that we are now asked how long, rather than if there have been changes, and he admits to choking on drinks and dry foods. The worst thing about all of this is how fast he is progressing....faster than ever before. As you all know, the effort required to care for our PALS increases dramatically as they progress.
It seems like I've been running at full speed since returned from the May trip in order to get ready to leave Sunday for Colorado. This will be ALS hunting trip #3 and, sadly, the final one. He said something in clinic about going again, now that he has a full quad shooting setup, but I don't see that happening.
We've had the feeding tube placed and have looked at speech generating equipment. The problem is access. He has an issue in one eye that makes the eye gaze not work, and the head mouse seems to be a bust because he neck cramps when he tries to bounce it. Yes, his neck is starting to cramp.
If his hands go and he can't use eye gaze or a head mouse, what then? I try not to wonder...
Oxygen was delivered today to bleed into his Trilogy. This will be especially important at the elevations we will encounter on this trip. O lucky me.
My brother in law and his wife were to go with us, but her back is a mess and the doc says she needs to see a surgeon. Our aid is now trying to arrange someone else to take her husband to appointments so she can come with us. I cannot do this alone.
The lift in the van is inop--I take it in Friday morning and pray that it's something simple. I can work it manually, but YUCK.
I just want things to slow down. I know I will hate life when they do, but I'm tired of always being in a rush.
I love you all. I hope to be over this period of denial soon so that I can reengage.
Becky