Well, if you've tried to email me today and gotten a "failure notice", you're not alone. For some reason, Yahoo has deactivated my living_with_ALS@yahoo.com email account. Of course, there is no phone support for free Yahoo email accounts, so I'm left emailing tech support and waiting (and waiting and waiting). I have to say, it is probably more frustrating for me, since email is my sole source of communication!!! Hopefully I'll be back "online" with email SOON at living_with_ALS@yahoo.com!
My speech is still "viable" at times, and not so much at others. I am grateful anytime I speak and something intelligible comes out! It is hard to imagine that soon those times will be gone. Still, I'm grateful (sooooooo grateful) for my SLOW progression. I have muscle twitches in pretty much every part of my body now....from time to time anyway....not constantly. They don't hurt, so it is not a big deal, other than a reminder of the fact that my muscles are dying.
I'm still fighting with my BiPAP at night. The problem isn't the pressure of the air....that is fine. The problem is that I can't seem to find a mask set-up that works well for me. The "nasal pillows" set-up, which is the most comfortable everywhere else, rubs my nostrils raw in one night. The nasal mask is either too small (and pushes up against my nostrils causing me to awaken because I can't breathe at all....that's not fun!) or too big (either has an air leak or is so tight that it feels like it is going to pop my eyes out). And then there is "hose-head hair". Gotta love THAT! And to think we thought "helmet hair" was bad (Heather!)....well, with a couple of these mask-strap set-ups I have the helmet-hair beat on it's WORST DAY!
And just in case you don't have a visual yet, I just want you to know that the masks either make me look like some mutant space-alien from Star Trek, like someone who is snorkeling, or like I'm wearing a gas mask. Too SEXY! I guess this is where it is a blessing to be SINGLE! ;-)
I am totally enjoying being home with Christopher. He is such fun (most of the time, anyway)! He is doing great in his school work. He hates fine motor skills (writing, cutting, etc.) but does better when we combine the skill with his interests. Today we did dot-to-dot drawings of helicopters and his beloved imaginary friend (and "beautiful" flight nurse), Kathy.
Today we also worked on a few pages of a memory book of our Disney trip. He enjoyed that. We managed to get 4 pages done before he had had enough of that and was off on another tangent.
Phillip went with Dan (his father), Kimberly (his step-mother), Catherine (my oldest child), Monique (Phillip's step-sister) and Daniel (Phillip's step-brother) to Chicago this past weekend. By all accounts he had a BLAST. They went to the King Tut exhibit. Phillip has always had an interest in ancient history and this had to be a huge "spark" to further his interest.
Phillip is working in the Anderson Public Library as part of his job-training through the schools --- and LOVES it! He is getting great feedback on his work. One comment I found humorous was about how "fast" he is! Yep. That's Phillip. He has always been on the move! I miss him a lot, but I am so glad that he is happy and doing well with his Dad and step-family.
Catherine is going to graduate from COLLEGE in May! I AM old! She will graduate at 21 years old with a bachelors in English. She says she wants to go to grad school....and does NOT want to teach....(I keep hearing the song: "What Do You Do With a BA in English?")
Well, hopefully my email will be back up soon. Please don't give up on emailing. I need to hear from you!!!
Lots of love, Claudia
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