I haven't updated my disease progression for sometime since it's rather boring and not exactly uplifting. However it's my style to be open so here is my report.My voice continues to weaken but still not bad on good days. My breathing is holding at 41% and I've been given a BiPap and a new mask. The resp. doctor wants me to use the BiPap machine during the night, but so far I only use it 2 hrs. per day. I may regret my stupidity.
I have my carers feed me as I can't lift my arms high enough to manage a fork or spoon.This also prevents me from finding a comfortable position to type. My reach distance is about 10 inches.
My neck muscles have weakened and my head falls to the right. I have a strap that can be cushioned on one side but it doesn't work well and I find it hot. Next week I'll get a neck collar and try that.
This sounds like a Waaa Waaa column but trust me it's not. I do get in a bit of a slump some days but I always bounce back with the help of self-talk and my friends. All in all, I'm doing well and eager to go on adventures in the sun. I'm hoping to go on a sail with the handicap program at Jericho this summer. I still have goals--I haven't given in to ALS. I never will.
1 comment:
you sound in good spirits to me:). don't give in. i can't imagine what you are having to deal with on a daily basis, but i thank God that i found you here on the internet because you have made my life richer. bless you dear lady! have a great day today, know that you are being prayed for every single day!
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